Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the category “Your Hyponatremia/CPM story:”

Michael’s story (symptoms):

I am happy to say that Michael has answered some or all of the same questions that Todd has. I think this will give you a good idea as to how each case of CPM/EPM is unique, but also has similarities, especially with movement, speech, cognitive issues, etc. There is a lot more research that needs to be done, and this is by no means a detailed explanation of everything that they experience, but it gives a general idea of what a person lives with.

I hope you’re ready for a great Christmas break. I hope you have a safe trip to Canada.

I’m hoping you can help me by answering the following questions. I’m trying to organize a list of symptoms that people have with this or how their injury has progressed over time. Feel free to add comments and additional comments about how the injury has impacted you. Take your time. I feel this is going to be one of the only ways to get doctors to understand how it impacts us long term.

Do you have issues with understanding with verbal directions or written directions compared to what might have happened prior to the injury?

Do you forget stories or movies or articles or recognize faces but forget the plot? – Yes all the time  

Do you have jerks and twitches? – Yes in my hands, feet, head, and legs…

Do you have issues sleeping? – No I am so tired by the time I get there I pass out.

Do you find yourself easily distracted?- I use to pride my self on how focused I was on being able to complete the task at hand, now if I can sit for ten minutes and stay on one topic I am doing good.

Have you had issues with managing your finances, forgetting to pay bills or paying them more than once? – I only have four bills to pay and my wife has had to take over that because I would always forget to mail them and would wonder why why they would call the house.

Do you need help doing any daily activities, like grocery shopping?- No but I should, I can be in the store for an hour if I go by myself and only need 3 things. I will constantly forget what I am there for.  

Have you had irregular heart rates?- 
No

Have you had hallucinations?- Yes, in the beginning i had a lot of them and it scared the crap out of me. I would be driving on the Highway and I would see people standing in the middle of the road. But now it has calmed down. Only once or twice a week i will see different thing.

Have you had any blackout periods? No

Have you had any weight gain?- No

Have you had any issues with visual problems with blurriness?- Yes, some days are better then others, but my vision is getting really bad. I don’t drive often at night unless I really have to.

(Ringing of the ears does happen with CPM/EPM. It’s a form of tinnitus. I have it in my left ear. It’s not daily. It comes and goes, but it can be rather painful when it does happen).- No

Have you had issues with smelling?- No 

Fatigue? – Yes, 

Any hormonal changes, like low thyroid? No

Issues with making impulsive decisions?– No

Issues with writing (typing or handwritten) such as cramping in hands, tremors, etc?- Yes can’t write anymore, my fine motor skills are shot. When typing I have to type slow because my hand twitch and jump all over the place so that can be an adventure. This is not 7 days a week, usually about 5 days.

Any issues with swallowing?-No

Any issues with understanding what someone is saying to you? – Yes, sometimes I have no idea what someone is saying and I just say ok or give them the answer I think that they are looking for.

Paranoia?- No

Depression?- Yes, some days I say why me, 

Sleep disturbances?- No

Sleep Apnea?- No

Numbness and tingling? – Yes, in my hands, back of my head and feet.

Balance or coordination issues?- Yes, some days / most days I walk like I am drunk. 

Do you have any ongoing issues with movements? like cramping, spasms, jerks, etc. Do you have any ongoing issues with memory, concentration or learning? Do your symptoms remain constant or do they come and go?– Yes, Cramps, spasms,jerks, stuttering and drooling come and go on a daily basis. Memory, concentration, learning, numbness of the back of the head, eye sight issues, hand tremors, feet tremors are 24/7  

Do you do any therapy or did you do so after being released from the hospital? – No

Have you met any doctors that have helped with your condition, neurologists/ GP? Yes, finally after going to 7 different neurologist I found one that took the time to listen and figure out how to help with my issue.

Have  you experienced new symptoms or have you had continuous improvements? – Yes new symptoms sense it first started. But the doctors say it is not progressive. 

Have you met any new people with CPM/EPM? – Yes on Inspire a web based forum for people to talk about their medical issues and concerns. Meet a new one this week. 

Did you have any treatments immediately following the injury? Like, hyperbariatric treatments, plasmaphoresis, anti inflammatory meds? – No

What are your current medications that are helping? – Carbidopa-levodopa, Baclofen, Ropinirole, Topiramate, and Tramadol. I take these three times a day. Many many pills………….      

Please feel free to leave questions or comments for me or Michael, and we can try to elaborate on anything listed. 

 

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Todd’s story (symptoms):

I am really impressed with how well Todd is doing. He really has made  such a dramatic recovery. It really gives us hope that if you have CPM, you can make great strides. So, Todd developed CPM in December of 2007/Jan of 2008.

Please see his story regarding the progression of his injury.

The following is a series of questions and answer regarding his symptoms:

I think your “addiction” to cycling is fantastic.

I am trying to do everything in moderation.

I hope you are doing well. If you can, if you can give a detailed account of your experiences to date. It seems like you’ve made a great recovery. Do you attribute that to anything? Any certain treatment? Any medications?

Deep down inside of me, I really believe it was God’s way of telling me “You have had enough scotch and Copenhagen”, although I have relapsed once one scotch and twice on beer, never on Copenhagen.  I once asked a X-Camel Straight smoker (may he RIP) after 17 years nicotine free if he ever missed it?  His verbal response was kind but his nonverbal wanted to rip my head off for asking such a stupid question.

The only medication that may have made a difference was the Carb-levadopa.  I was on that until I saw Dr. Bajwa, the local Parkinson’s expert, we weaned me off. (Jan 2008-Sept 2008).  He also diagnosed me with the Parkinsonism.  I have a functional left hand that has issues with a now overextended thumb.  I do not know if it was because of the CPM or the nasty restraints that I had to wear in the hospital.  At the time, I could not communicate, but I was extremely worried I was going to lose function in my hands because of the restraints.

Do you have any ongoing issues with movements? like cramping, spasms, jerks, etc. Do you have any ongoing issues with memory, concentration or learning? How about issues with vision, heart rate, hearing? Do your symptoms remain constant or do they come and go?

Cramping from my spinning.  Early on I had slight issues with memory.  While in the hospital, I always saw a yellow hew.  I have a constant ringing in my ears, which I do not think is CPM related.  I do experience thoratic pain some nights.  My bum left hand also experiences a dull pain and stiffness.  My facial expression is always straining and I have a constant primitive noise that I make and I stutter when excited.

Do you do any therapy or did you do so after being released from the hospital?

I did Occupational, Physical, speech and recreational while at Bethesda.  I continued with speech for an additional 3-6 months going through 3 therapists.  Last summer I spent $ to get a 4 year/40,000 mile tune up with the last and best of the 3 speech therapists.  Everyone tells me my speech is fine, but that is B as in B, S as in S.

Have you met any doctors that have helped with your condition, neurologists/ GP?

I haven’t seen a neurologist since Bajwa, to get off the Carb-Levadopa.  I take the mini aspirin, B-complex, Multi-Vitamin, chondroitin and glucosamine.

Have  you experienced new symptoms or have you had continuous improvements?

I only thing that may be new is the pain in my left hand.  I started doing what I call “old folkies” yoga in 2008.

“Old Folkies” because at 52, I am the youngest there.  Recently I am trying to do “Real” yoga, “real” because I am the oldest there.  Also am trying to do core and muscle classes at last 2 times a week striving to reach 3-4X a week.  I DEFINITELY do feel better exercising (just do not tell my Life Partner).

Have you met any new people with CPM/EPM?

I have personally met M, which was fabulous.  It was like a first date:  seemed like less than a minute in over 2 hours.  I have wanted to go and meet D (about 20 minutes from my Mom) but didn’t pursue that.

Did you have any treatments immediately following the injury? Like, hyperbariatric treatments, plasmaphoresis, anti inflammatory meds?

The only thing I can remember is the Carb-levadopa and Multivitamins.

Conversation continued (Sorry about some repeats, I didn’t remember asking the questions before):

Do you have issues with understanding with verbal directions or written directions compared to what might have happened prior to the injury?

No, I always had and still do have a great sense of direction.

Do you forget stories or movies or articles or recognize faces but forget the plot?

No, if I did, it would be more age related.

Do you have jerks and twitches?

No.

Do you have issues sleeping?

I do have sleeping issues that I am trying to figure out without seeing a Doctor. In a perfect world, I need 6-7 hours of sleep. I use to wake up to my life partner coming to bed—I sleep through that now. I have been going to bed at 10:30 and waking at 4:00. I have finally decided I am going to get up at 4:00 and try not to nap. I have a clean conscious—If tired, I can fall asleep anytime anywhere in an instant.

Do you find yourself easily distracted?

No.

Have you had issues with managing your finances, forgetting to pay bills or paying them more than once?

The only issue that I have had: We took some money out of an IRA to pay for college tuition. Forgot to tell my accountant.

Do you need help doing any daily activities, like grocery shopping?

No. Although everything is more difficult to do: Dressing, tying shoes, cooking.

Have you had irregular heart rates?

No.

Have you had hallucinations?

No.

Have you had any blackout periods?

No.

Have you had any weight gain?

No.

Have you had any issues with visual problems with blurriness?

No.

(Ringing of the ears does happen with CPM/EPM. It’s a form of tinnuitis. I have it in my left ear. It’s not daily. It comes and goes, but it can be rather painful when it does happen).

Mine is not painful.

Have you had issues with smelling?

No.

Fatigue?

No.

Any hormonal changes, like low thyroid?

No.

Issues with making impulsive decisions?

No.

Issues with writing (typing or handwritten) such as cramping in hands, tremors, etc?

I cannot write legibly anymore although only one check has been returned. A bill comes; I immediately make out a check—old school.

Any issues with swallowing?

No. more so with chewing.

Any issues with understanding what someone is saying to you?

No.

Paranoia?

No.

Depression?

I am a recovering alhocolic.

Sleep Apnea?

No.

Numbness and tingling?

In my left hand—I swear it is because of the hospital restraints.

Balance or coordination issues?

No.

Have you noticed any new symptoms developing or anything that got better but is now getting worse?

No.

It sounds like overall, except for a few minor speech issues and movement issues, you have completely recovered. Do you feel that is a correct summary? Oh, and in regards to directions, I wanted to clarify the question….do you have issues if someone tells you something verbally, like a new procedure at work, would you have difficulty remembering the task or understanding the directions? Oh, and how long overall do you feel it took for you to make the recovery to this point? Was it a matter of weeks, months? Oh, and what area of the brain was impacted? Was it the pontine area or the basal ganglia area? And how long has it been since the injury again?
I have the drooling and grunting issues along with my bum left thumb, also.  I am graciously, graciously, graciously……..thankful for my recovery, but I would not use the term “completely”.  I have no issues following directions.  I think it was the pontine, honey, is that right?  My life partner has to do the timeline?  I have no clue–we did 2 days of Tour de Kota on 2010 and in 2012 we did all six.  I was diagnosed with CPM in December 2007/January 2008?

Thank you, Todd!!! I hope that I can get more information regarding real life experiences with CPM/EPM. I think it might be an important reference for doctors who want to know what a person lives with after they leave the hospital. With Todd’s help, I’ll keep you posted of any changes and improvements that he experiences, but regarding this injury, he has had the best recovery, and he didn’t have any treatments except cognitive and speech therapy.

Please feel free to contact me with any questions or comments, and I will get them to Todd or try to find an answer for you.

 

Update:  Some information provided about how life has changed for Todd since his injury according to his significant other:

Well, to elaborate just a little more, the event happened right  before Christmas of 2007 and the way it was explained to me was that the demyelination of the myelin sheath doesn’t allow the nerve signals to properly transmit, therefore causing the symptoms of speech he has described.  Believe that would be the basal ganglia.   I would say those issues are considerably more difficult to deal with than “minor”.  Sometimes speaking is quite labored and will often cause him to speak very little because of the strain.  You can visually see the strain on his neck muscles when speaking.  The grunting is mostly in the am upon waking before his body becomes accustomed to regular movement.  That is why vigorous exercise demonstrably improves the situation and remains a vital component to his continued recovery and/or keeping him where he is at in the recovery process.
 
I believe that the recovery has been slow and steady ever since the event occurred. 
Thank You for input, Linda. I think that is really good to know. I think an outside, yet personal, description of the experience is very helpful.

Todd’s Ride:

Hi, folks.

This is going to be an ultra brief post. Todd’s story is posted on my blog, and he has made remarkable strides!

He is raising funds for CPM/EPM. I do not have all of the details, but please be feel free to check out his donations page.

 

 

My prayers and good wishes are with him and his wife as they go the distance for CPM and EPM.
Good Luck, Todd!

Michael’s Story:

I am happy to include Michael’s story. He has been suffering from CPM since 2008. He like others saw initial improvements, but has now experienced a decline.

If you’re reading this, here’s the thing…there is not enough information available about what’s going to happen. It’s not known. The doctors will tell you: you may get worse; you may get better; you may stay the same. Isn’t that true for EVERYTHING? That’s why I feel it important to get stories from people that HAVE it, and are living with it every day out to you. BUT, I want to stress to you that it doesn’t mean that YOU are going to experience those same issues.

I would compare this blog to making a path in a forest. What they know and understand about CPM/EPM is virgin territory. Most research articles just repeat what other research articles tell them, and it always end with basically, we don’t know. I figure the best way to make a path is by asking the natives. It doesn’t mean it’s the only way, but I figure it’s a good start.

So, here we go, another account from a native:

First thing I need to say is that I am an alcoholic, I was not drinking from 2001 to 2007 then I went back out. From, the first week of 2007 to the first week of 2009, I was drinking. I have not had a drink in over three and a half year and I hope I never have another. With that said, here is my recollection of what happen to me and how I got CPM

The last ten days of 2008 I had been throwing up between 4 and 6 times a day. I didn’t feel bad, I didn’t have the flu or anything like that I just could not keep anything down. For those ten days I didn’t drink alcohol, just small sips of water and orange juice. Well on the second day of January I went to visit my mother and she took one look at me and said get in my car I am taking you to the hospital, I think you have had a “stroke” when I got to the hospital they took one look at me and thought the same thing, “stroke” so they put me in a room in the emergency room and started doing the tests. That’s when they found out my sodium level was 106. So they admitted me and started me on two IV’s to replace the lost sodium. Well looking at my medical records, (which all of this information is coming from) my sodium level went from 106 to 124 in 24 hours. So boys and girl, what happens when one of the very best hospitals in the whole world gives you almost double the amount of sodium that they should in a 24-hour time frame, you get… CPM!!! (Non- diagnosed)

So, I want to point out in Michael’s case, it is difficult to say what caused Michael’s hyponatremia. The most probable cause of the hyponatremia was alcohol. I am guessing that he started to develop hyponatremia after drinking and that caused him to get sick for those ten days where he couldn’t hold anything down. Now, it’s also very possible that he just had a stomach flu and after getting sick for so long, not being able to eat and only drinking water and OJ, caused him to develop hyponatremia, but the important thing here is that he had the chronic form. Because he didn’t develop seizures or go into a coma from the hyponatremia, his brain and brain stem had enough time to adjust to the swelling. That said, when you have chronic hyponatremia, it puts you at higher risk for CPM. Back to his story:

  With that said about 8 days after I was given CPM by the hospital the first signs started to show up. I ended up at a local hospital in basically a coma for six and a half days. They thought it was alcohol induced because there was quite a bit in my system. When I got out of this local hospital for the next 120 days were complete hell. I walked like a 90 year old man; it would take me two hours to walk half a mile. One day I fell in a snow bank and could not get up for over 45 minutes. I needed help to get in and out of chairs. In and out of cars, ect. My speech was awful; it was like English was my second language. Had to wear non-tie shoes in the winter because I could not tie them. I had little control over my bladder, and my hands shook so bad, drinking anything hot was out of the question.

Then after about 120 to 130 days had past I started to get better and things started to clear up. I could walk better and talk and things went back to normal. The company I was working for went out of business and I went and painted houses with a buddy of mine. Then after about 6-8 month I started to notice numbness and a small shake in my left hand and left leg. Not all the time, just now and then. Then I started dropping the paintbrush, which I never did. So I went to see my PCP. He ignored it few times and then finally said ok lets take a look. So on February 25 2011 I was finally diagnosed withCPM.

Sense I started dropping the paintbrush; I am back with the company that I have work for, for 32 years. I am a salesmen, have been for all of the 32 years, but I stutter, shake, have spasms, I am down to calling on one account, can only work till noon, some days English is my second language, have no memory what so ever, and my fine motor skills are gone. With out my wife I would be back to wearing non-tie shoes, tea shirts and sweat pants. So basically I am back to were I was the first 120 days of hell with this disease.

Thank you Michael!!

 

Todd’s Story: CPM

Todd and I have corresponded for the past year, and I find his story also very motivational, so I’m happy to start sharing it here. Todd’s story shows how alcohol can lead to hyponatremia, and being an alcoholic can further increase your chances of developing CPM. It’s a dangerous combination, alcoholism and hyponatremia.

Now, I want to spend time explaining some of the things I’ve hit upon before regarding alcohol.

You are at risk for developing hyponatremia if you have even one drink….however, it is very unlikely for you to develop it after drinking just one drink.

The more you drink, the more likely you are to develop hyponatremia. If you are an alcoholic, you are at great risk for developing it. You can also develop CPM/EPM if you are an alcoholic without developing hyponatremia. In other words, drinking chronically can lead to demyelination of your pontine area, basal ganglia, or other areas of your brain.

I hope Todd’s story will motivate those who are drinkers to think twice about picking up their next drink.

……Unfortunately, I don’t know how to blog, but anything I share with you is free game, my life is an open book now, I don’t hold any secrets about myself anymore. You description of the causes of CPM was explained to me as the perfect storm:

1. I am an alcoholic
2. I pounded scotch and water.
3. I was taking htc for HBP.
4. I got sick on both ends

I am starting to work on my testimony for my recovery group and will share if when I am done.

I try to wake up everyday trying to figure out why God spared my life? Everyday is a great day is I choose to make it one which I suppose about 50/50…..

Hey,
I finished ready your blog today. I know exactly what you mean because sometimes it takes me an hour to write these short little notes because I do not want to offend anyone. I’m in a quandary, I what to forward the blog address to my health care providers but can’t find the right words. There is a long story behind it: They were my clients and they fired me! My work with them was in the med-mal arena.

Hey,
Housekeeping: I was diagnosed with CPM Late December 2007. I am an alcoholic. I haven’t seen a neurologist in 2+ years, they really never wanted o bother with me. My primary care Doc’s are great. I use to go once a week but now it is once a year. The remnants of the CPM are my involuntary grunting, drooling and uncontrolled belching. I also 90% of the time have a “deer” in the headlights expression. Physically, I’m proud to tell you I am in the best condition of my adult life. Over 4 years of sobriety with 3*** and Copenhagen FREE. I’m into biking and spinning. You have to brag when you can: I burned 818 calories in today’s spinning class, a personal best.

My life partner read your Blog and is super impressed with your research. She will be way more useful than me, because she lived the CPM, I only remember certain aspects of my time in prison.

She obviously has permission to correspond with you but is still getting computer literate (I finally bought her and everyone I love a MAC) and is also busy.
We have 5 children, 2 still at home………

Hey,

I forgot to mention that my speech is not perfect. I do stutter when I get excited and my volume increases and I don’t realize it. I also cannot write that well anymore not that I could in the first place. My mother, an RN, who in retirement took me to her continuing education seminars on brain injuries, when I would look down always reminded me, with brain injuries, always give it at least 4 years for recovery.

p.s. Spinning is the best Cardio ever and it is easy on the knees.

My life partner swears that my better days are the ones when I’m active in exercise. I can remember the first time to the gym: 1/11 of a mile was a victory….then a mile…..then two and now 100 mile bike rides.

Keep up the great work.
I’m still encouraging Linda my life partner to write you, I overheard her discussing the Blog with my oldest daughter about their experience with my CPM and the surrounding events. The only things I remember are the peace of the ICU, before being admitted telling my boy to take me out if they cath me, being able to memorize the 8 questions of “Are you an Alcoholic“. Being on the general floor on the Hospital, constantly asking to be walked, because I new something was wrong. I do not remember having headaches. I’ll keep encouraging her because your story sounds familiar to what happened to me except alcoholism was the proximate cause of my low blood sodium.

Hey,
I just got back from a session of speech therapy. I went for a 4 year/50,000 mile tune up. The good news is in their humble opinion and expertise my speech is great. I would admit that normally I feel 95-98% but somethings dip below 90%, I admit the speech problem is all in my head.
One issue that they identified is my facial expressions.
“deer in the headlights” eyebrows always up and my mouth is constantly open. Two things I was not aware of.
So much for my Neurologist’s suggestion for becoming a professional poker player! At the end of the day I can feel some self confidence with my speech.

Hey,
The “deer in the headlights” look is definitely a CPM issue along with my mouth being unconsciously open 24/7 unless I’m thinking about correcting it. The toughest setback of CPM is the mental aspect: Remembering how things were before CPM, then now. Trying your hardest for minuscule gains is a bitch. Don’t be worried about the muscle issue yet. I cannot specifically say that happened to me but I definitely lost strength. Three hunting seasons ago, I could barely carry a 20 gauge and was so pissed off after the season I went directly to the gym. Three years later, I carry what affectionately call “the cannon”–Weatherby O/U 30inch 12 gauge. After this year a buddy told me to “knock off that disabled shit because you can’t fool me, I saw you dropping everything you shot.” He was right. Bottom line–we know when someone is BSing with us or is sincere. Personally I like the BS too because I like to give it out.

SO, as you can see from Todd’s story. There is hope for living with CPM/EPM. He isn’t the same person he was before the injury, but he’s making strides to make the best of his life now. I still have a lot of questions for Todd, so please don’t consider his story complete at this point, but I wanted to get his story out there.

Have a great night.

Deb’s Story:

 

Deb has helped provide insights into symptoms that are related to CPM/EPM. She’s suffered from the condition for four years, and I am including excerpts from comments that she’s left me in my comments section to help journal some of the symptoms that aren’t recorded in the medical literature.

In the beginning:

I had the headache for about a month before my collapse into a coma. I kept going to the Chiropractor thinking there was something wrong with my neck, but as it turned out it was my sodium.

She further describes her experience:

My initial symptoms were severe. I was in a coma for 4 weeks. Went into cardiac arrest twice. When I woke I was paralized from the neck down, unable to speak or swallow. I had a feeding tube thru my nose while in my coma, but when I woke and they realized I wasnt able to swallow they put one in my stomache. I was then sent to a nursing home where I did 5 hours of phsyical, occupational, and speach therapy daily. I was in a wheel chair for quite a while. I had horrible pain, sharp shooting pains, and alot of cramping. When I woke from my coma my left foot and leg were cramped up, my foot was up to my knee. My hands, were curled up in balls. To make you understand my mind set, when I saw my neurologist for the first time after I left the hospital, he told me I may be in a wheelchair for the rest of my life. My very first words were “F*** you”. They were faint, and hard to get out, but he had to know what I was thinking. Over the next few months I continued my therapy daily. Eventually I was walking with a wlaker. Then my therapy was cut from 5 days a week to 3. And again over many, many months I began to walk with a cane. My tremers are bad in the AM before my meds, my muscles feels like they are constantly being torn. But now I am duing therapy on my own, I can still only lift 2lbs, I have lost over half of my muscle tissue. They say I may never get that back, also eventually I WILL be back in a wheelchair. I can type with 2 fingers, I used to type 80wpm. I have trouble with my vision, My left eye is now considered a “lazy eye”. When I am tired, or look at the computor for too long it gets a mind of its own. My ligaments in every joint are kinda like broken rubber bands, my joints are what they call “free floating”. So, beginning in Sept I am going to start a series of surgeries on them to tighten the ligaments. I have constant pain, never letting up. Not even for a minute. I go once a week to a Chiropractor because my muscles pull my bones out of place. I also have a massage once a week to help keep me limber. Mind you, I am a former swimmer, loved to run, play volleyball, softball, or pretty much any outdoor sport. Now I have the body of a 80 year old (according to all my docs) and the life of one too. CPM/EPM has stolen everything from me. The only thing I enjoy now is watching my kids screw around in the yard and watching birds. My hands are so weak I can’t even enjoy baking or cooking. Hope this helps, I appreciate your site because I don’t have to say all this stuff on facebook, or even inspire. Sick, just sick to death of this disease. Deb

The following describes her experiences with tremors, a problem that I’ve described in previous posts:

The tremors, Mine are really bad in the AM before my meds. After my meds, they get better. If I am doing anything with my hands for too long they will get bad. I have to have an easy hairstyle because I don’t have the control to “do” my hair. If I hold the hairdryer for too long They will start to shake and cramp. I have an experiment for you; Take your thumb and 1st finger and make a “o” with them. Your thumb should point out at the joint closest to your hand. If it doesn’t you have significant muscle loss. Mine is completely flat, my “o” is more the shape of an egg. Give it a whirl. let me know what you find.

In regards to her experience with how she experienced improvements, but over time, she experienced a decline in her health:

Yes, I have had a decline in my health where things initially improved. I have the same issue with recall, I get so pissed at myself! I can remember things that make me angry or upset just fine, but any happy memories just fade away…… My thumbs face a weird way too when I try to make my “o”. My occupational therapist was the first to notcie it. Also, every morning I cry when getting up, all my joints and muscle are so tight it is rediculous! That’s why I do yoga, it help stretch things back out. What is happening is when you sleep your spasticty is causing your joints and muscles to tighten. So, when you wake in the AM, your body needs to move, if you didn’t move would become “stuck” . I have the reading issues as well, haven’t read a book in almost 4 years. All for now. Deb

………I have been pretty lucky as far as docs go. Since they don’t know much about my disease they take my word for pretty much most of the time. My new issues are my thyroid. I now have hypothryoidism. Never had any issues ever before in my life. My memory sucks as well. I have issues with concentration and my spelling. I could spell anything before, now I have to think thru a word, and sometimes I still get it wrong. I am very spastic, my movements are almost robot like. They have gotten better in some ways, and worse in some ways………

You can read more about spasticity through the blog post I made that included the information that Deb provided.

In regards to the emotional issues related to CPM/EPM, which I touched upon in my previous posts:

….. I know exactly what you are talking about. I still struggle with these things and my cpm/epm happened 3 1/2 years ago. And your right, I never feel truly happy. I can feel good about things that happen to other people. I have lost all of my family (mom, dad, brother, sister) because I just tell it like it is. Things I kept bottled up for 30 years just came flying out of my mouth, I had no control. It was like I was another person. Most of my husbands family has walked away too. They just can’t handle my brutile honesty. Things just blurt right out. I have no control. Before I know what I am saying people are standing there with their mouthes hanging open, just stairing at me. Whatever I am thinking just fly’s out of my mouth! I am almost always so close to tears all it takes is one weird look from someone, anyone and I am crying. In fact yesterday, I told my husband I think I need to find someone to talk to. Someone who justs listens and has no judgement. Since this happened I have felt useless. I have tried every kind of “hobby” you can imagine. Most I can’t do because of my hands, and the rest I just don’t have the patience for. I have been reading your blog on a regular basis, and I think it;s great!……..

Deb has also left several comments on the importance of using sea salt. There is a growing recognition on how sea salt is the better type of salt to use, but I haven’t researched it myself, so I don’t know where the difference is.

…….Also, I have seizures when my sodium gets down to 128. That is the “magic number”. Since my incident, my sodium has been pretty well controlled. I read an article that if you eat sea salt on everything it won’t raise your blood pressure, but also give you what you need. I eat it on everything!!! ……

…….I have been writing to Dr. OZ for 3 years. Also Dr nancy from the Today show. But they don’t want this info out. It would ruin their “salt is bad” campain. They are right, table salt is bad, but sea salt couldn’t be any better for you………..

I hope to post more regarding how CPM/EPM has impacted others, so please feel free to leave me comments, etc if you would like to participate. I really believe this is the only way we”ll ever be able to express our stories in their fullest. Medical journals do not research symptoms or experiences that we suffer from long term. There’s just not enough information regarding our experiences, so we will have to document them ourselves.

THANKS, DEB!!! Hopefully, you will be the first of many 😉

My story: Living with EPM

When I sit down to write my post, I never have a true idea as to what is going to be written. There are several things that float through my head each day that I believe would make an excellent topic to discuss. At some points, I even will start to write ideas down on pieces of paper or this small notebook that I’ve been carrying around, but eventually through out the course of a day or several days those things become “misplaced” and my ideas become scattered.

I’m still looking for the notebook that I lost a week or more ago.

Anyway, I’m sure you’re dying to know what happened once the diagnosis of EPM was made. Did they start rounds of drugs, tons of tests, hooking me up to machines and monitors?

I had another IV started when I was first admitted to the neurology department.

Tom left early in the afternoon because Izabel was tired, and he needed to get settled into the hotel.

The doctor, who was the resident who first told me that I was right, told me that they would give me anything I needed. He told me that the main doctor that was going to see me would get me everything I needed.

The other doctor that was supposed to come from home to check on me got there around midnight or a bit after.

I was exhausted but I couldn’t sleep. No, it wasn’t the kind of you can’t sleep because you’re waiting for Santa kind of sleep, but the I really want to sleep but can’t sleep. I had only had three hours or sleep in the past 48 hours, and every time I closed my eyes, I would see blackness and my mind would melt away but I wouldn’t sleep.

It was exhausting and frustrating.

So the “head” doctor (seriously can’t recall the name for them right now..not resident..ugh, anyway, the doctor who is supposed to be in charge of the other doctors, but isn’t the chief) was there. She told me there’s nothing they can do. There’s not any treatment, but because I had EPM, she felt I was going to make a complete recovery.

The doctor told me that I would receive my glucose treatment, ambien for sleep and pain medications for the ongoing splitting headache. However, a hour and a half later, none of that had been provided. I paged again at 3 am and by 6 am I started to scream and cry.

I was literally screaming and crying at the nurse. I knew it wasn’t her fault, but WHY WAS I IN THE HOSPITAL??!! I had a HUGE bottle of percoset that I could take if I was home to help temper the nausea inducing headache. It was a headache that I had for OVER THREE DAYS. It was the kind of head that made blinking painful. My stomach felt like someone was hollowing it out with a spoon. I COULD NOT sleep. I was at the point of utter exhaustion.

I could have had treatment if I had stayed home. I would have been able to call my hematologist, continue to take my percoset which at least helped dwindle the mind numbing pain.

WHY was I in the hospital if they were going to give me LESS treatment when they knew that I had a life threatening injury?!!

I was ready to leave! I called Tom to pick me up. I was at the point of becoming hysterical.

Around 7 am, the very disgruntled resident came in. What do you want!?

Pain medications, IV glucose, and ambien.

Anything else?!

No.

Fine.

He left and about an hour later they gave me something for the headache. Literally, before they wouldn’t even give me a TYLENOL.

None of the nurses or doctors would tell me why.

(It turns out that they didn’t want anything to impact me physically. They didn’t want the pain meds to cause any complications neurologically. They didn’t want the glucose to destabilize my sodium levels, and they wouldn’t be able to give me Ambien because it was now early morning. It would have been nice to find that out earlier.)

I was not going to be able to sleep for another 14 hours.

Around 8 am another neurologist came in. He had about 6 to 10 medical students with him. I didn’t mind that. After all, I want to be a doctor. I understand how it works.

What I did not understand and still do not understand is how this doctor acted. I thought this was a doctor who was going to be able to explain things to me. He would be able to answer my questions. He would be able to tell me what was going to happen to me.

Instead he started to examine me. He had me do several tests. He was testing my reflexes and balance. He did not use my name. He would say things like: notice how the patient’s xyz reflex is abnormal. This is a sign of xyz abnormality. The patient’s  xyz reflex may or may not be indicative of xyz. It might be that the patient is just hypersensitive to the motion. Could you please stand up and try to walk over here?

I really thought that at the end of these tests he would then explain what they meant to me. I thought, at some point he’s going to send the students out of the room and then address me personally. He would let me know what was going on.

I didn’t stop to ask him questions because I didn’t think he would leave and not come back.

After I tried walking across the room, tilting to one side, almost falling over, he and the students left. I kept waiting for him to come back. I could hear him discussing my case further in the hallway, but I couldn’t understand what he was saying.

This was one of the worst feelings I have ever had. I felt that this guy had the answers. He knew what was happening to me. He saw abnormalities in my movements and he would be able to describe to me what was going to happen.

Instead, I was a specimen. I was not a person, but something to be studied. I was an “it”.

I was at a loss. When I stayed at this same hospital about two weeks earlier for my pituitary surgery, NONE of this happened. I didn’t have ANY complaints regarding my stay. The nurses were amazing. My doctors were fantastic and caring. I had NO idea that things would be different when I came back for the EPM.

This type of “non” treatment continued the entire time I was there.

I was not allowed to go to the bathroom without an escort due to my balance issues. I was EXTREMELY happy that I didn’t have to be catheterized, use a side bed potty or a bedpan.

I demanded to just use the regular bathroom, but there was the stipulation that I had to have a nurse walk me there. I would call for the nurse and she would not come. I would page and 15 minutes would go by, so I would page again and another 15 minutes would go by. At this point, despite the pain medications and the mind numbing headache and fatigue, I was able to unplug my leads on my own, and roll my iv bag around to get to the bathroom.

You can only hold off using the bathroom for so long. I made the mistake of waiting to call the nurses until the point of when I had to go to the bathroom.

I was having issues with walking, but I made it fine to the bathroom and back.

Of course, once I got back into bed and all of the machines plugged back in, the nurse came in.

I have to stress that with my first stay at this hospital (it was a different ward), the nurses were extremely attentive.

A little while later, my neurosurgeon that handled my pituitary surgery came into my room.

God Bless this man! He was awesome. He told me that there was no way to tell how this thing was going to workout. He told me that a 1/3 of the patients made a complete recovery, 1/3 had continuing health issues, and 1/3 got worse.

He explained to me that there were no guarantees, but it was important for me to stay  optimistic. He explained that the areas that were effected were the “best” areas in the brain to be effected. The pontine area is the control center in the brain. It is an area that directs signals that the rest of your body produces to the outer regions of the brain for processing.

If you’re injury is here, then you have a greater risk for going into a coma, or developing  locked in syndrome or having a much higher risk for dying.

I really trust my neurosurgeon and even though all of the doctors at that point told me honestly that no one there had ever seen a case of CPM/EPM, I felt confident that my neurosurgeon had the most current and correct information. He told me that there was nothing that could be done. He told me that there were no treatments that could be used. I would just have to wait and see.

I was worried. I was scared, and I was alone. I started calling my friends and family. I wanted to reach out to them because I had NO real idea what was going to happen. I could become paralyzed at any moment. I could lose my ability to speak.

I wanted to be able to tell my family that I love them encase I wouldn’t have that chance later.

It was hard. My heart was breaking.

If I knew what I know now, I wouldn’t have been in this situation. I could have stopped it from happening at all. I could have reversed the EPM damage by having hyponatremia induced again.

No one should EVER be in this situation. There is no reason why someone should live through this.

I hope you will help prevent this from happening to someone else by spreading the word regarding it. You can make a difference in someone’s life.

More to come later.

 

My EPM story: the diagnosis:

Up to this point, I have talked about how I developed hyponatremia, how it was treated incorrectly, and how I tried return to the local hospital (the place that treated my hyponatremia) THREE times to get treatment for my developing issues with EPM.

The last trip to my local ER, I asked  for a MRI because I was almost positive that I had developed EPM. Instead, they attempted to admit me for observation because of the reaction I had from their doctors, I decided it would be better for me to travel to meet with my ENT and endocrinologist.

After hearing about my issues, they were also determined to get me into to see a neurologist, despite it was the Thursday before the Fourth of July. Trust me, despite going to a HUGE hospital with hundreds of doctors, trying to get an appointment with one of their 50 or more neurologists was a big deal.

Tom and I had no idea what was going to happen next.

I left my local ER around 7pm. I was pumped full of narcotics and was almost dead to the world. I mean, I really did not know what was going on.

I got home, and I think it was at some point around 3 or 4 am, we started our oddessy. We had our three year old with us, and this trip was unexpected. We had no idea how long we would be gone, or what we would need.

I guess we planned for the worse because we didn’t run out of clothing, etc. Granted, I spent my time in a hospital gown.

So, our trip up to the hospital was awful. I had a splitting headache. I didn’t feel well. My daughter was acting like all three year olds. At first, she slept but around 9am, we stopped to get breakfast.

It became absolutely clear there was a problem when I tried to order breakfast for us. Tom had gone to do something, find a table, I don’t know what, so I was left at the counter alone to order.

I knew what we needed, but I was having trouble understanding what the girl was saying. I was extremely frustrated. All I had to do was give the girl the numbers and tell her what drink we needed with each. Tom’s order was easy. Izabel is a picky eater, so I had to make adjustments with her order, and I had a hard time asking if they had pancakes or cereal. I had a hard time explaining that I needed milk with her meal not coffee. The most frustrating thing was when I wanted to change the kind of cheese on my order. I didn’t want Swiss cheese that normally came on the sandwich, I wanted American cheese.

I kept telling the cashier: I don’t want cheese. I want cheese.

Of course, she looked at me like I was retarded because I was.

I tried to explain further: Not cheese. Yellow cheese.

My entire order was like that; I couldn’t express the changes I wanted to make. I had a hard time asking for coffee with Tom’s meal. I had a hard time finding out if they had cereal, and by the time it came to my order, I was left to pointing irrationally at the pictures on the wall. Number 6, no cheese, cheese. I don’t want cheese. I want cheese.

Yeah.

I KNEW what I wanted. I couldn’t say it. AND, these episodes kept skipping. It wasn’t continuous issues with communicating. Talk about feeling like you’re going completely nuts.

Shortly after we left Arby’s, I started experiencing the crippling stomach pains which I no longer was considering as an issue for porphyria but for my adrenal glands.

With all the physical and mental stress I was having, it isn’t difficult to believe that my adrenal glands were becoming stressed. Maybe it’s not my adrenals, maybe it is AIP, maybe it’s both…I really think only God truly knows, but all I did know is that sugar/glucose would stop the pains.

So, Tom and I went off track to find a CVS or other drug store to pick up a bottle of glucose tabs. This delayed our getting to the hospital, but trust me I don’t think I could survive an attack of crippling abdominal pain.

After a shot of liquid glucose and about 1000mg of glucose via tabs, the pain subsided a bit. I was feeling more nausea, but the painful cramps weren’t as bad.

I swear this trip was CRAZY. I think it took four hours longer than it normally does, and I can not explain WHY it took so long. I mean, there was the stop for breakfast. There was the stop for glucose. We did hit road construction at some point, and then there were at least three potty breaks for Izabel.

During the drive, we were also working with an awesome receptionist for the neurology department to try to get an appointment with a neurologist. All of the neurologists were booked or gone already for the 4th of July weekend.

They could only make the appointment for about a WEEK from that date.

At this point, I still had no true clue as to what having EPM or CPM meant. I really didn’t understand that I was in a life threatening situation.

I believe I had read about it, but it didn’t sink in that this was really what was going on with me.

I was relieved when I got to my first appointment with my ENT. I really thought that he must have left packing in my sinuses and that this was going to be the reason I was having such a horrible headache.

I remember sitting in the waiting room, extremely calm. My little girl was striking up a conversation with another little girl. Tom was looking up the newspaper on his laptop, and I was just waiting.

I tell you. I was still experiencing difficulties speaking. Then they did the torturous search of my nasal cavity and sinuses. They spray your throat and nose with a numbing spray, and I was getting extremely ill from the spray. It’s supposed to taste like bananas. It doesn’t. Some people don’t have any issues with it, but other people, like me, the numbness triggers your gag reflex and you because extremely ill.

Then they slowly insert this 1/4 inch diameter, flexible, rubber hose with a scope on the end up your nose.

It doesn’t seem like they should be able to get that much of the hose up your nose (ha, that rhymes), but they did, and I can’t imagine having an alien abduction be more painful or uncomfortable. Just saying.

The ENT reassured me that things looked good. He assured me that there was no packing in my sinuses. He assured me that the surgical site was looking great. However, he was concerned with my neurological issues. He was glad that I was going to see my endocrinologist. He thought I should be hospitalized, but he wanted me to see the endocrinologist first.

So, by this point, I needed a wheelchair to get around. I was truly nauseous, dizzy. I was having issues with my balance. I had the horrible headache.

My endocrinologist is the most awesome doctor in the world, with a close second for my neurosurgeon and an even closer third with my ENT. Truly, I’ve been to hundreds of doctors, or at least a hundred. I’m not sure if that’s an exaggeration. I’ve seen a lot of doctors, so please believe me when I say, these doctors are amazing.

My endocrinologist was disturbed at my neurological issues. She was concerned at how long they had been going on. I told her that I thought I had CPM. I explained why I thought I had CPM. She didn’t arch her eyebrows. She didn’t give me a smirk or a shrug.

She told me that it would be unlikely for me to have CPM because I was 34. She believed that only babies and old people developed CPM. I became concerned that she wasn’t going to do anything.

She left the room to try to get an emergency consult with a neurologist. She checked back with us in about 10 minutes to let us know that the neurology department had not gotten back with her at that point.

She came back five minutes later to tell me that there weren’t any neurology appointments available, and so she was going to admit me. She felt I needed to have a MRI, NOW, not a day from now, not a week from now, NOW.

I was checked into the hospital and in my room in about an hour.

I was seeing the neurology residents in about 15 minutes after that. I was seeing another neurologist about an hour after that.

I was given another IV, pain medications, and because my endocrinologist totally believes me, she also requested the IV glucose to help with whatever it was, adrenal crisis or porphyria. (Even though my endocrinologist ordered it, the neurology department-unbeknownst to me- did not want me to have the glucose treatment, so that wasn’t started. This caused my abdominal pains to become unrelenting.

By 11pm that night, I was being wheeled down for the MRI. Trust me, even though my endocrinologist and ENT believed that I was experiencing a major problem, this belief was not as well received by the neurology department. I got arched eyebrows. I got the smirks.

I was desperate that they find something on the MRI. I KNOW that sounds funny. I KNOW that sounds crazy, but when you’re in that much pain, when you have that significant of a problem, the last thing you want is for them NOT to find anything. Trust me, when you have that many arched eyebrows and funny looks, if they came back with there’s NOTHING on your MRI, the next place you’ll be heading to is the psych ward.

My relief became absolute. My confidence in myself became iron clad, when the neurology resident came rushing into my room.

Resident: You were right. You were right. You have myelinolysis. THEY DID THIS TO YOU. THEY ARE 100% responsible.

I think I was on the verge of tears. I can’t remember exactly what he said after that. This injury was out of his league, and he assured me that the fellow in neurology would be in to see me in a very short while. He stressed that this was a serious issue and that the fellow was actually coming in from home to see me.

I had my answer. I had my reason. I wasn’t crazy. I didn’t have a stroke. I was right. I WAS RIGHT.

I wish that I could say, that’s it. That’s all that happened, but it’s not. The story does continue. Maybe, now, you’ll see why I’ve chosen to write about this later. It’s easy to become distracted and angry about what happened.

It can consume you.

Plus, it’s a hell of a long story. I mean, these are by far the longest posts that I’ve made, and they take the longest to write. It’s really exhausting, but I really feel, you need to know. You deserve to know. You need to learn to trust what you feel and to fight for what you’re going through. You need to understand that even the most prestigious hospitals in the country are fallible. You need to ask questions and push for answers, even when you meet resistance.

I hope this helps you with your struggles or helps to push you forward when you feel like giving up. You aren’t alone.

My EPM story: the middle (part 3):

Today, I am tired. Yes, extremely. I am debating as I write: stop and take a nap or write this post. I might have to start and then finish at a later point, so please bare with me.

I believe I left my previous post at the part where I was extremely relieved that I was alive. The doctors and nurses had told me that if they raised my sodium levels too quickly (which they did) that I could go into a coma or die. I believed because I was being released to the general floor of the hospital and I wasn’t in a coma that by the grace of God, I had survived without any harm.

They never mentioned, ever, that I was going to be at risk for CPM/EPM for weeks, actually months. I thought I was safe.

A few days after leaving the ICU, I was released from the hospital completely.

My biggest concern was developing hyponatremia again. The ICU doctor who was following my treatment requested that I continue to have my sodium levels evaluated over the weekend. He was going to personally call me with the results.

I really believed that this was unbelievable care, and it gave me relief knowing that I was in capable hands.

I had my levels checked. They were normal, and I felt fine. My headache had been gone for several days. I felt tired, but who wouldn’t?  In a two period, I had pituitary surgery AND developed a life threatening case of hyponatremia. I didn’t attribute fatigue to anything but my recent experiences.

That weekend, Tom pushed for us to go to an outdoor festival as a family. I was tired but remarkably better, and I really appreciated doing something with the family on a beautiful June weekend, so we went.

We didn’t stay long because it was really taxing. In less than an hour, we left.

Looking back on it, I think this is when I first started to experience an issue related to EPM.

We were driving home, and I wanted to rent a movie from a Redbox or Family Video. We were just down the street from a Family Video, and I forgot that I wanted to rent one until we were a few blocks from home.

And this is some what how the conversation went:

Me: Oh, I wanted a movie from the movie thing

Tom: Huh, what are you talking about?

Me: I wanted to get a movie from the thing.

Tom: What thing? What are you talking about?

Me: I want a movie.

Zack: Mom, what are you on? You aren’t making any sense.

Me: A MOVIE! From the thing!

(Both Tom and Zack were snickering at me by this point, and I was getting more and more upset).

Me: From KROGER or the VIDEO PLACE.

(At this point, I think they knew what I was talking about, but continued to mess around with me.)

Me: NEVER MIND! YOU GUYS ARE STUPID. WHERE DO YOU GET MOVIES FROM?

Zack: You mean, the RedBox?

Me: YES!

Zack: You weren’t making any sense.

Me: Where else would you get a movie?

Tom: The movie theater.

Me: NO, You can’t GET a movie from the theater. You watch movies there.

That afternoon, I was watching a movie from the “movie thing”, ie RedBox. It was in the early evening, and I sneezed. It was a horrible, hard sneeze. Now, just in case you don’t know, after you have a pituitary or other brain surgery, you aren’t supposed to sneeze for 12 weeks!

Anyone who is currently living in Ohio will understand that is impossible, especially in June. The neurosurgeon told me that if I did sneeze to create less pressure, be sure to sneeze with your mouth CLOSED.

The sneeze I had was extremely sudden onset, and I did not have the option of sneezing with my mouth closed. It FREAKING HURT!!

It took about five minutes for the initial pain to wear off. About 30 minutes to an hour later, a headache came back. I thought, geez, I rattled something. And, I was also concerned because if you do have a hard sneeze after having a pituitary surgery, you can displace the fat patch that they use to make a barrier between your brain and nose.

It’s a pretty serious complication if you sneeze that patch out, and the stuff that came out of my nose was pretty gross.

I didn’t really think it was a serious issue until a few hours later when the headache didn’t stop. I took some prescription pain meds to stop the headache, and they didn’t work.

My next fear was that I was developing hyponatremia again. Remember, one of my first symptoms of hyponatremia was a severe headache.

I decided to wait till Monday, and if the headache didn’t stop, then I would go to the ER.

The next day, I still had a headache, and it wouldn’t go away, so I made the trip the ER.

They did a CT scan. My fat patch was in place. I was told that my sodium levels were normal, and that I must have a migraine.

I think they gave me an injection of medication for migraines and sent me home.

The next day, I had an early morning appointment in Cincinnati, about 45 minutes away. It had nothing to do with my pituitary surgery. It had nothing to do with my hyponatremia. In 1999, I had broken my ankle, and in April and May had started to give me problems. I had to go meet with my orthopedist to determine if a future surgery would be needed.

Tom had to drive me to the appointment. I was not allowed to drive due to my health. It was on the way from that appointment that I really became aware of a problem.

My headache was not going away, and I was taking the pain meds every four hours to try to “kill” it.

On the way home from the appointment, I got a phone call from my insurance adjuster, and I was having a hard speaking.

I was trying to say the word, “estimate”, and I couldn’t. I just kept saying..eh, eh, eh, eh.

Then I tried explain to Tom what was going on, and I was having issues speaking to him. I was really tired. My head was splitting. I knew something was wrong.

I began to realize how bad things were when I tried to swallow.

Now let me explain the difference between having issues with swallowing vs choking. I will address these differences in a future post. As for now, I will try to describe what was happening to me.

I wasn’t eating or drinking anything at the time. I was just doing one of those normal swallows that you do through out the day. It might have been to clear my throat or another type of natural reflex.

I was struggling to do it. The muscles in my throat were not working. I kept trying to do it. It was extremely uncomfortable.

It seems so simple and natural, but after several minutes of struggling, I knew that I needed to go back to the ER.

We went home, and I discussed it with Tom. I thought this all might be related to hyponatremia still, but then I began to research hyponatremia to see if I could determine if I could get it a second time, or if it was common to have it happen a second time.

It was at that point that I realized my symptoms were matching up exactly to CPM/EPM.  I also discovered how quickly was too quickly on raising sodium levels.

We decided I would return to the same ER. I have never went to an ER twice in a row before, and I thought this would trigger the doctors to do something, anything.

The checked my sodium levels and did another CT scan. Everything on the CT scan looked good.

The radiology tech who saw me the night before, was treating me again, and she realized the difference. I explained that I thought I was developing CPM/EPM from having my sodium levels too quickly. I told her the only way to know for certain is to do a MRI. She told me that they wouldn’t do a MRI at that ER after hours, but I would need to go to the main ER to have the test done.

The doctor thought that I had a large amount of sinus packing in my sinus cavities. He told me that this was what was causing the headaches.

I was also experiencing stomach pains, so I thought maybe it wasn’t CPM, maybe it was an adrenal attack. After all, I had just had pituitary surgery, and I had been concerned that the stress on my pituitary would cause an issue with my adrenals.

I know, adrenal issues. For years, I had been told that I probably had acute intermittent porphyria. I wasn’t entirely convinced but a ton of the symptoms for AIP fit with what I had experienced, and most importantly, glucose therapy FIXED it.

I asked doctors several years, what would cause an elevation in uroporphyrins AND could be successfully treated with glucose therapy. The only thing they knew of was AIP.

It wasn’t until I met with my magnificent endocrinologist, that I had an answer: Cushing’s disease would cause elevated uroporphyrins

I also found that the crippling abdominal attacks that I’ve suffered from years (usually they happened during extreme stress or while trying new prescription drugs) could be caused by adrenal attacks. The adrenal attacks are treated with high glucose therapy.

The adrenal-pituitary connection made sense where AIP didn’t. The symptoms mirrored each other. I had found my answers.

So when I had my pituitary removed, I became concerned that I would have issues with my adrenal gland. Since the treatment for AIP and adrenal crisis is the same, I told the ER doctor that I was having an AIP attack.

He was extremely willing to give me the treatment for the abdominal pain, but he disagreed about the appropriate treatment. He told me that glucose was not the treatment for AIP, but glucocorticoids. I know he was incorrect, but at that time, I was so incapacitated from the pain medications that they gave me and due to the developing injury caused by EPM, I was in no position to argue or prove him wrong.

I immediately got sick from the medication he gave me ( I believe glucocorticoids). It caused me to have extreme pain everywhere. I felt like my body was on fire. I immediately thought that I was having an allergic reaction to the medications. The nurse told me that the reaction was normal.

I know what they have me was not what I normally received for AIP attacks.

Anyway, I was released from the ER with a diagnosis of a sinusitis. I was given a prescription medication of glucocorticoids for the crippling abdominal pains.

I did not realize how serious my condition was, but I knew that I needed to have a MRI to rule out or confirm CPM, so I decided to call my GP in the morning because I felt that there was no way that he would let me down.

I got an early morning appointment with a nurse practitioner. I explained the situation to the receptionist over the phone, but my GP was booked. I thought, well even if I see the nurse, then I will have access to my GP. I will make sure she asks him about CPM and the MRI.

When I met the nurse practitioner, my speech was even worse! I was barely able to make sense. I was beginning to have trouble understanding what other people were saying.

I explained that I thought I was developing CPM because my sodium levels were raised too quickly.

I got the arched eyebrow and the smirk. I knew she thought I was nuts or making this up.

She told me that they wouldn’t be able to request a MRI because we were approaching the fourth of July weekend. She told me that if I was really concerned about it that I should go back to the ER.

I explained that I had already gone there twice and that I would like to have it discussed with my GP.

She told me that he and her had already discussed my situation and had made the decision that they wouldn’t be able to do anything.

I wasn’t speaking properly and having issues swallowing, and my GP wasn’t going to do anything.

I was extremely disappointed, but had no other options.

When I developed hyponatremia, I had reached out to the endocrinologist who had been treating me, and I had been in continued contact with the nurse who worked with my neurosurgeon. After I had been told by the ER the night before that they thought my extreme headache was being caused from packing left in from the pituitary surgery, I contacted the ENT who was responsible for opening and closing my sinus for the neurosurgeon.

The ENT was the first doctor who directly responded to my concerns. As I was on my way home from my GP’s office, the ENT told me that he wanted to see me. He told me (as he had told me before) that they didn’t use packing in the surgery. He was concerned that my pain, etc was being caused by an infection or a breach of the fat patch.

He wanted to see me as soon as possible the next day. At the same time, my endocrinologist reached out to me because she wanted me to see a neurologist over my speech issues.

At this point, I’m beginning to confuse myself. I don’t think I had my appointments for my doctors until after I had gone back to the ER for the third time, after I had seen my GP.

I believe while I was at the ER for the third time, I got a call from my doctors regarding my appointments, or maybe it was a voice mail. I will have to update this information after I review notes that I have.

I had gone to the ER with the intention that I was going to get the MRI that I needed in order to determine if I had CPM. At this point, I was beginning to walk into walls. I was losing my balance. I was having extreme issues in speaking.

It was like I was having a stroke.

When I went to the ER, I told them flat out what the doctors and nurses from ICU had told me; they thought they had raised my sodium levels too quickly. I told them, I think  I’m having issues related to CPM/EPM, and I needed to have a MRI to determine if that was the problem. I explained my headache was unrelenting and that the previous CT scans only showed “possible sinus packing”  or sinusitis.

They made me almost incoherent from pain medications. At this point, I had not been able to sleep. I COULD NOT sleep. It’s not a typical case of insomnia. I was exhausted. I wanted to sleep, but I wasn’t sleeping. This was something new.

After awhile of laying there, trying to watch TV but not being able to actually understand what I was watching (I thought it was because of the medications they had given me), a different doctor came in. He was foreign. I could not understand anything he was saying. It’s not because he wasn’t speaking English. It wasn’t because of an accent. I could hear him speaking. I could see him moving his lips, but I had no idea what he was saying. I knew he was asking questions, so I kept trying to give him answers, but I had no idea what he was asking, NO CLUE!

This is when I became really scared.

He told me that he wanted to admit me for observation.  In that moment, I knew these guys, this hospital, weren’t going to do anything.

All they had to do was a MRI, and they were going to admit me.

I decided I was going to have better chances of getting answers at a different hospital, and the one in this larger hospital had prestige, and it had doctors that I really trusted.

Don’t ask me why I could understand some things and not others. It made me feel like I was nuts. It was like having a loose connection somewhere. I was struggling to understand or to hear or to speak, but there were moments of clarity.

It really made me feel nuts and frustrated.

This is all part of having CPM/EPM.

It’s sad to say that this was just the beginning of the middle of my story.

I know. Isn’t it crazy? At this point in my story, I have tried and tried to get answers, but I was met with ignorance, obstinance and frustration.

I hope this part of my story motivates you not to give up on yourself. Trust me, it would have been easy for me to go home the first day from the ER and just pretend that it was a migraine. It would have been easier to just try to pump myself full of more and more pain medications, but when you know there’s something wrong, you may be the only one who will fight for you.

You can’t give up on yourself. You can’t believe the doctors over what your body is telling you. Don’t ignore the symptoms when the answers don’t just fall into your lap. You are the only voice that matters when it concerns your life and your health.

My EPM Story: the middle (part 2):

Thank You for your patience. It took me a few days to locate my notes regarding my hyponatremia stay, and even after locating them, I’m still fuzzy regarding the details.

To be honest, it is hard for me to remember if I remembered correctly. For instance, I wrote in my notes that they gave me potassium via IV, but I really thought I had to take potassium tablets. I know I had potassium tablets when I was at the hospital that treated me for EPM, but I can’t remember how I was treated for low potassium while being hospitalized for hyponatremia.

You might be wondering; really, what does it matter? Well, it raises doubts as to what I wrote back then. Was I remembering things correctly even a few weeks after it happened? Can I accurately tell you what happened to me?

I know there might be some information in my posts that contradicts something I might have posted for certain (I hope not), but that’s usually because I find a new study or new information that contradicts what I have found in research previously.

I am trying desperately to keep everything I write accurate and informative, and I want that to be extended to how I was treated and how my story took place.

That said, I remember waking up in the ICU. At the hospital I went to, the ICU rooms were vast and private.

I thought it was a Sunday morning. It felt like I had been unconscious for awhile, but it turned out to be a Saturday.

The nurse questioned me regarding, the day, the year, the current President, where I was.

I answered everything correctly, except the day, but she told confirmed my mistake that it was Sunday, when in fact it was still Saturday.

I realized this when the next nurse or doctor came in to speak with me, which was pretty quickly. (I believe there were two doctors. One I know was a nephrologist. The second, I believe, was an endocrinologist.)

They explained the seriousness of the situation. They explained that I could develop seizures, delirium, go into a coma, or die.

The nurse had explained the same situation to me before the doctors, but the gravity of it really wasn’t sinking in.

Don’t get me wrong, I felt like I was dying. I had a hard time staying awake, but I was fighting to stay alert and aware. I will stress, I was fighting. My head was splitting. It wasn’t a classic throbbing pain, but an intolerable pain from the base of my neck that radiated through my head. I would have to explain it in what I would think it felt like, and that is as if someone had pierced the base of my skull with an ice pick.

I felt as if I fell asleep that I wouldn’t wake up, but I couldn’t stay awake.

When the doctors (I believe there was more than one that saw me initially in the ICU) and nurse left, I really had to use the bathroom.

I’m incredibly stubborn, and the doctor had told me that I was going to have to stay in bed, complete bed rest, but I didn’t want to use a bedpan, so a few minutes after they left the room, I stood up out of bed. I felt weak. I felt nauseous and light headed. I knew I had to act quickly, so I started unplugging things.

I got the pulseoxomiter unhooked. I couldn’t figure out to how to unhook the leads to my EKG monitor. I felt so bad, and I knew I was losing time. The nurse was going to be back any time.

When you’re that sick, you just don’t think clearly. I had unhooked these monitors dozens of times before when I was in the hospital, but I couldn’t figure it out this time, and if I pulled all of the leads from my chest, then they would know I had been out of bed.

My efforts were in vain. I stood there in my hospital gown as guilty as a kid stealing a cookie before dinner, the nurse walked in.

Chastised and defeated, I climbed back into bed, as she put on the pulseoxomiter. She reinforced that if I had to use the bathroom, it would have to be on a bedpan.

This was an atrocity that I had avoided for 32 years. (I’m accounting that I had been potty trained before the age of two).

If you have not had the embarrassment of using a bedpan, if you have to use one, you are usually in a position where you don’t care if you use one or not. However, this is not always the case, and it wasn’t in mine.

I contemplated holding it until I could attempt another break for it, but I couldn’t and using a bedpan was a lesser evil than defecating in my hospital bed.

So, in came the nurse, bedpan in hand,  she instructed me to roll to my left side.

Now, I know you weren’t anticipating this little bit of knowledge, but I figure it’s better if I tell you then you’re surprised by it in the end.

If you’ve ever used a bedpan, they’re one size fits all. There aren’t any xs or xl bedpans. I would totally need the xl. My a$$ is plentiful, so as I was positioned on it, I felt for certain, I was going to need clean sheets despite having a pan underneath me.

I’m sure if you’re an xs, it probably feels as if you’re sinking down into it. I don’t know which feeling would be worse.

Here’s the other thing you should know: it is unbelievably difficult to use the bathroom flat on your back. It gives me a whole new appreciation for babies.

I guess, once you figure out how to stop from using the bathroom while lying on your back, there becomes a conscious muscle control that prevents you from doing it.

As I was trying to overcome my conscious muscle control, I was totally regretting eating over a quarter of a watermelon the previous day. Yes, drinking caffeine (iced tea) and eating watermelon, along with having low sodium levels, leaves you fully loaded in the intestine department.

I apologetically informed the nurse as to what was in store, and I suddenly had a whole new appreciation for their job. If I was her, I would have tossed my cookies.

I guess, they become accustomed to the gruesome because she didn’t hurl.

That said, when the first major incident was 20 minutes in the past, I had another date with the bedpan.

Relieved, when all the urges had passed, I was informed of the next plight. I was going to be on an all liquid, high sodium diet. What does this mean? Soda and broth..oh and jello.

I haven’t mentioned this previously, but my culinary tastes don’t routinely include broth and jello. I do drink a Pepsi a day usually, but I don’t usually drink more than that, so I wasn’t a happy camper. I really didn’t feel very well, and I didn’t think that chicken broth and Pepsi was going to make me feel better.

Truly, I was concerned with what I was eating.

Yes, even being near to the  closer end to death, I was concerned with my dietary options.

(Woohoo, I just want to break to say, I’m extremely pleased with my ability in writing today’s post. After struggling for months to complete my thoughts, today is going pretty smoothly 🙂 )

I remember meeting with the doctors, I believe there were two of them that met me both at once, but it might have been one just after the other.  Both of them expressed the seriousness of the condition.

Tom was unaware of my situation. He was still at home by early afternoon. I really didn’t care at the time if he was there.

At this point in time, most of the day, Saturday, I felt like a human pin cushion.

I believe I was having a new lab drawn every 3 or 4 hours. (It might have been every 8 to 12. I know at one point, they became less frequent.)

I had already been in the hospital from June 10 to June 16th for my pituitary surgery. They had also been very generous in poking me full of holes, so I’m afraid my continuous disappointment in having lab work done was evident.

When I was admitted to the ER, my sodium levels were 118, by the next afternoon, my levels had dropped to 110.

At this point in time, I was awake and aware of what was happening despite the drop in sodium.

(This is why I believe, I had the chronic form of hyponatremia. I believe my levels were probably dropping while I was in the hospital for pituitary surgery, but were still in the normal range at the time I was discharged. I think that over the course of Wednesday evening, Thursday and Friday they continued to drop. This would explain why my brain stem didn’t rupture or why my CT scan didn’t show any evidence of cerebrum swelling.)

I was sending out texts and making calls to my family and friends requesting prayers as soon as I could Saturday.

I remember watching a ton of TV. I remember spending a lot of time going in and out of consciousness. I also remember having an UNRELENTING headache.

By Saturday night, my potassium was also too low, and I believe I received IV potassium.

They did place a PICC line. I think that was when I first arrived; however, they didn’t use it except to administer medications.

They were concerned that since they flushed the PICC line with saline solution that the labs would be invalid, so every time I had my blood drawn, I had to have a puncture. That led to a LOT of punctures.

Sunday, I was still experiencing the extreme headache. I was still experiencing the nausea, and I still felt like I was dying.

I had talked with my Aunt, who is an opthamologist. She stressed the importance that they raise my sodium levels very slowly.

Every doctor and nurse that I spoke with said the same thing, so I really thought they knew what they were doing. Since they told me that it had to be raised slowly, I thought they knew how to raise it slowly.

What I wasn’t told: what exactly slowly meant. The doctors told me that it would probably take 5 days or more to get my levels back to normal.

I was already on IV saline, and I was receiving liquids only on Saturday. On Sunday, they continued the 3% saline IV, but they allowed me to start eating a “normal”, non liquid, diet. Yay!

Sunday afternoon, they started to enforce a fluid restriction.

I was not exactly happy about this. I was really thirsty. It wasn’t just dry mouth.

My neurosurgeon who performed my pituitary surgery was cautious to inform me that I would need to be careful about distinguishing between thirst and dry mouth, so while I was hospitalized for the hyponatremia, I brought hard candy  and chewing gum to keep my mouth from drying out.

By Sunday night, I was begging for water from the nurses. They told me that I could only have 4 oz in an 8 hour period.

I remember after Tom left Sunday night, the nurse brought me what she called the “magic” pill. She told me that this is what they used when someone’s sodium level wasn’t rising fast enough with IV saline. She called said when sodium levels were being “stubborn”.

I thought, this will make me feel better.

I turned the TV off and went to sleep.

I remember at some point after that, I requested to use the bed pan. I was still on strict bed rest, and I really had to use that bathroom.

I think I had tried to use the bed pan, but couldn’t, so the nurse told me that she would come back later.

Apparently, shortly after this,  I became delusional.

The next thing I remember, there were trying to insert a catheter. The first nurse made several attempts. Then another nurse tried to make several attempts. It didn’t work.

Trust me. I was sick, but I could still feel pain.

At this point, I said, I’m going home. I’m not doing this. I had gone from being completely out of it, to completely aware of what was going, to I don’t care what’s going on because I feel like I’m dying, in a span of 5 minutes.

They called another nurse from the OB/GYN ward to insert the catheter. He said something I’ve heard before; you’re anatomically abnormal. Then he followed with, you’re ureter curves at a weird angle. I had never heard that before, but I’ll trust him on it.

He was able to get the catheter in it’s proper place, and I apparently wasn’t lying when I said I had to go. If I’m correct, the nurse told me that I had emptied two turns, which if I’m correct, corresponds to two liters.

Apparently, I had also soaked my bed because she spent the next 15 minutes changing the sheets and my gown, and cleaning up.

In other words, I wasn’t kidding when I said, I really need to use the bathroom!

The next morning, I was SO thirsty. I remember they gave me my 4oz, and I couldn’t help but guzzle it. They gave me fluids with my breakfast too, and I guzzled that. I really couldn’t help it.

As I was “enjoying” my breakfast, the nurse was discussing why I was restrained. Yes, I had the belt around my stomach.

Now, I really don’t remember doing this, but she told me that when I became delusional, I apparently got out of bed, pulled out all of my leads and strolled down the ICU hallway naked looking for a bathroom.

Given my previous dissatisfaction with using a bed pan, I can’t say that I absolutely did not do this. However, I had a PICC line, and as out of it as I was, I could not imagine pulling out all of my leads, but not pulling out the PICC line.

Maybe, I had the foresight to grab my IV bag from the stand and stroll down the hallway naked, but considering how much of everything else that I remember, I believe this was lore for the sake of inserting a catheter so she wouldn’t have to clean a bedpan.

I don’t know. Really. Maybe, I’m way more skilled in delirium than I am fairly conscious. Guess, we’ll never know for sure.

Anyway, when the nurse told me that I drank through my ration of liquids in about 10 minutes, I sent an emergency message to Tom: you need to sneak in some water and Pepsi. Please, I’m dying of thirst.

I swear, I had just finished sending that text, when the nurse came hurrying in. She stated: they think your sodium went up too quickly. We’re stopping the saline. You need to drink as much as you can. What can I get you?

She was changing my IV fluids at that point in time.

I thought: Thank God! I requested water, and then sent the text to Tom, saying what they had just told me. My sodium levels went up too quickly. They’re worried that it’s going to go up too high. You don’t have to bring any water. I still want the Pepsi.

I knew what they said, but I didn’t know what it meant.

At this point, my sodium levels were 137. By Monday afternoon, they were 145. The range for normal is 135 to 145.

So to recap, I was admitted with a sodium of 118 on Saturday morning at 1am. By Saturday afternoon, it had continued to drop to 110. By Sunday morning, it was 118. That was 8mmol in about 30 hours. If you compare it from Saturday evening to Sunday evening, it raised by 9 mmol.  From Sunday morning to Monday morning, it went from 119 to 142. It was more than 23 mmol in 24 hours.

From everything I posted in my blog to date, it shows that this was too quickly.

I thought that I was going to be fine because I was doing fine.

I didn’t realize that it could take up to a week or longer for CPM or EPM to develop.

On Tuesday afternoon, my sodium levels had stabilized, and I was released from the ICU.

This further escalated my belief that I was extremely lucky and that I was going to be completely fine.

I spent the next few days in the hospital without incident.

By Thursday afternoon, I was ready and willing to leave. I was looking forward to getting back home to my kids, to sleeping in my bed, to eating what I wanted to eat, to not being awoken every 3 or 4 hours to have my vitals checked or to take medications.

The doctors who worked with me, NEVER gave me a hint that something else could happen after the hyponatremia. They NEVER told me that it could take a week or longer for this new injury to develop. I had NO clue what was going to happen next.

Because of that, I am writing this blog. Because of that, I am injured, possibly for the rest of my life.

I really hope that you will read my story and realize that this could happen to you. This could happen to someone you love, but if you forward this information, you might be able to stop it.

This is by far my longest post to date. There might be a few errors, so please bare with me as I work on editing it in the next few days.

If you have questions or find something lacking, please let me know.

My story: The middle….

So, if you’re the random physician, you might have read my beginning story and thought, “hypochondriac”. You might think that if you aren’t a physician. Trust me that crossed my mind over and over again in the past 8 years.

Really…are you really feeling what you’re feeling? Try just sucking it up for a few weeks. Try concentrating on other things. Try the 20th antidepressant because your doctor believes it’s all in your head.

I even went to a psychologist not just once, but for dozens of appointments. I didn’t want to be sick any more than I wanted to have a broken bone.

Being sick robs you of life! You want to take your 6 year old son to the zoo, but every bone,muscle, joint in your body hurts. You want to go on vacation, but you’ve spent every day of your sick and vacation time at home or recovering from surgery. You’ve spent THOUSANDS of dollars on medical treatment, so you can’t afford to send your kid to camp or get a newer car.

To all of those people who believe that I was making it up, that it was all in my head or that I wanted to be sick, this is all I have to say to you: F*** You! Walk a day in my shoes and you would fall to the ground and would never get up.

(I would have totally left the proper cuss word in, however, I was told by Tom it might be a touch dramatic. I guess he didn’t read the rest of my post ;0)

I GET UP! Every time. It’s not easy, and I do struggle with it. I am extremely lucky to have great friends and family in my life that help carry me when everything becomes way too much for me to handle.

I have not given up, not yet. There are days when I want to. Yes, living a life with illness has caused me to make sacrifices. I’ve had to work on days that I could barely move. I’ve missed my son’s football games. I have scrimped to get by and have had to max out credit cards to make sure that I had food and clothes for my kids and me.

Being ill for this many years has PUSHED me to be a better person.

I started back to school while working full time, so that I could become a doctor because I had NO DOUBT that I can make a difference in the lives of other people. Money wasn’t a motivator. Trust me. It would be easier for me to work for less and not go to school than get up each day go to school, then go to work, and then come home and do laundry or homework.

I PUSHED myself to work 40 hours or more a week, while going to school full time, while taking care of my family, while being PREGNANT, while being SICK because of my absolution to help people, because I have been there. I have faced the struggle that 99.9% of the doctors have never faced.

It’s not enough to have an arrogant ass in a white coat tell you they are sorry or they don’t know. You need to have someone who has drunk the foul tasting barium, who has had a half dozen colonoscopies, who has gone years being ill with no answers; that is a person who you want to hold your hand or tell you they don’t know.

I am that person, and that’s why I have pushed myself to do what I have done.

YES, I AM EVERY WOMAN. I AM STRONG. I AM INDEPENDENT, but that doesn’t mean that I’m invincible.

Being told that I had a pituitary tumor gave me an answer, and it gave me a solution. No, I wouldn’t be able to put the toothpaste back in the tube. There were certain things that are irreversible, the auto immune issues, but I knew I could handle those things. I wasn’t going to continue to get worse, at least not from the pituitary tumor. IT was fixable, stoppable, and most importantly I had my answer.

My pituitary surgery happened June 10th. Everything went well with the surgery. There was an issue after the surgery where they thought I might have developed diabetes insipidus (see my earlier posts in hyponatremia for an explanation of what the difference between diabetes mellitus and insipidus are). It was pretty inconclusive. They thought I might have been just drinking too much water. I don’t think this was the case, but I honestly don’t know.

I know I was peeing a lot. I didn’t think there was much of an issue. Diabetes insipidus is when you pee more than you drink. So if you drink 8oz of water but excrete 16oz, then you probably have diabetes insipidus. They continuously measured my input and output, and this is what they felt was my issue.

I was kept in the hospital for 6 days after the pituitary surgery with all normal labs and normal vitals. That was a Wednesday.

Finally, I felt my exodus was over. There was a light at the end of the tunnel.

Friday morning, I woke up. I had a headache, but I really felt it was from the pituitary surgery. Then, I noticed my feet were cramping.

I’ve had muscle spasms in my feet since I was a kid, so I really didn’t believe this was anything new.

I had to go to the grocery store, so Tom and I went. It was there that my feet started cramping again. Now, this was unusual. The cramping felt different from when I get the spasms in my feet, but I didn’t think too much about it.

When I got home, I just felt-blah. I felt weak and tired. I ate some watermelon, drank some tea, and went to bed.

I woke up, went to the bathroom, ate some watermelon, drank some tea, and went back to bed.

I really felt off.

The next time I woke up, I felt really bad. I knew there was something radically wrong. The headache was just not going away. It was starting at the base of my neck and radiated through my brain. I felt sick to my stomach. My feet cramped when I stood up. I couldn’t tell if I was going to pass out or vomit.

I told Tom, he had to take me to the ER. I didn’t think I was going to live. (Yeah, I know, but there was this strange feeling, different from times in the past when I felt really sick. Can’t truly explain it, but you’ll know it if you’ve gone through it.)  I thought I was going to have to call an ambulance. (Tom was picking up our son, Zack, from a friend’s house, so he wasn’t home when I made the decision that this was really bad.

It seemed like an eternity for him to make it home and for me to get to the ER. I don’t remember much when I got there. This was around 11pm to midnight Friday night.

I remember going in and out of consciousness. I remember asking for pain medications. I remember at one point they did a CT scan, but I don’t remember getting back and forth from the room or having it done.

I remember a doctor coming in and telling me that my CT was normal. I thought, oh my God, they are going to send me home, but part of me didn’t care. The other part of me wanted to fight.

I was really lucky that they didn’t.

I think he came back later and he told me that my sodium levels were too low and that I would need to be transferred to the main hospital. I had a sodium level of 118.

They actually repeated the test to make sure it wasn’t a lab error. It came back 117.

I felt horrible.

I asked for pain and nausea medications over and over again because I couldn’t remember them giving me any. I just kept going in and out of consciousness. I want to stress this is not like falling asleep. Falling asleep you can generally fight. This I had NO control over.

I remember at one point I got up to go to the bathroom. The nurse asked me if he needed to assist me. My stubbornness and humility was still prevailing at this time, and I refused his help. I was really, really, lucky I didn’t pass out on the way to the bathroom.

Around 5 or 6 am I got transferred. I felt a huge moment of relief because I really thought this meant that I would get relief. I felt once I got there I was going to be better.

I remember being loaded onto an ambulance. I don’t remember the ride there. I remember staring at lights as they wheeled me down the hallway.

I remember being pushed through the doors of the ICU room where I was going to stay.

The next thing, I remember was waking up and it was morning, but I had NO idea what day it was. I didn’t know if I was out for a few hours or if days had passed. I knew where I was. I knew I had to go to the bathroom.

I know the nurse asked me questions. I thought it was Sunday. However, I don’t think it really was now. I think the nurse misinformed me.

I never went into an actual coma. I was in and out of consciousness the first day.

I believe I was still able to text my friends and family that morning to let them know what was happening.

Tom had left me the night before at the ER. He didn’t realize what serious condition I was in, and he went home to be with the kids.

I’m going to leave it here at this point because I wrote notes to myself about what I experienced a long time ago. My memory fails me now. I have to go back through my notes to know for certain what actually happened next.

I hope you find strength in this so far. I hope you understand that just because you have been sick or have faced issues, doesn’t mean that this is the end of the story. It’s just the middle. You’ve got a lot more ahead of you both good and bad, but it’s definitely not over.

Have faith.

My Story: The beginning….

Today has been a rough day for me. I’m physically and mentally exhausted, and I really feel like giving up. Yes, partly because of the CPM/EPM, but mostly because all of the other health issues I’ve faced in the past 8, going on 9, years.

In the beginning, I thought I had the flu. I had low grade fever, aches and pains, nausea, vomiting, and abdominal pain. It was the first time I actually had to call off work for illness. I had NO idea that it was the beginning of an incredibly long and pain filled journey.

I really thought that in a few days, I would be back to 100%. I had a friend recommend seeing their family doctor when I complained that I was fatigued and gaining weight for no reason. She felt that it was a thyroid issue because she had a similar problem. A few weeks later, I got the “flu”.

I went through a long process of testing and blood work. The tests kept coming back normal. My thyroid was in the lower limits of normal, but still normal. My CBC was normal, and as more blood tests came back normal I felt more and more nervous. What was the issue?

I had ultrasounds and a CT scan. That was normal.

I saw my ob/gyn, my gp, and a GI specialist. The GI doctor told me that there was nothing physically wrong with me and that it was probably psychological issue.

I went to a new GP. I felt that since the GI doctor sent that report to my original GP, and all of my other tests were normal that the GP would probably agree with the GI doctor. I shouldn’t have done that. My original GP was a good doctor. She had not thrown in the towel on my care, but I believed others view point would impact her decisions.

I went to a new GP, and he began to run the same tests again. He believed that despite normal CT scan and blood work that I could have an issue with my appendicitis. There’s something called an acute appendicitis and chronic appendicitis. The acute version can be the life threatening kind that develops suddenly and lead to rupture. The chronic causes chronic abdominal pain, low grade fevers, nausea and vomiting.

This GP contacted a surgeon who was his friend and requested an exploratory surgery. (My previous GI doctor told me that no one does exploratory surgery. He said, it was outdated medicine.)

The exploratory surgery revealed endometriosis. I had never heard of it previously, but it causes abdominal pain, nausea, vomiting, extreme menses. It can cause intestinal bleeding. It can evade the lungs and cause bleeding in the lungs. It can actually be found in the brain as well.

My endometriosis was not severe, but the surgeon felt that this explained my symptoms 100% percent, and I was relieved, but I also felt a nagging uncertainty. It did not explain the fatigue or weight gain or hair loss, but my abdominal pain was gone.

But my relief only lasted 3 weeks! It was about the time that I stopped taking pain medications that my pain came back. Along with the pain, the nausea returned.

It took me about another 12 months of constant illness to have a repeat hida scan. This is a scan that tests the function of the gallbladder. I was told by my original GI doctor (the one that told me that a psychologist would be more benefit than an MD), that my first hida scan was normal.

The second hida scan was severely abnormal. It showed that my gallbladder function was less than 13%. This made my new GI doctor and GP think that my pain, nausea, etc was being caused by my gallbladder. So, I went through gallbladder surgery.

Again, I experienced temporary relief, approximately three weeks.

I continued to experience intestinal bleeding and anemia. These issues centered around my menses. It was thought that this was being caused by endometriosis of the intestine or colon.

Trying to catch the lesions of endometriosis in the intestine and colon is like trying to staple jello to a tree. It’s next to impossible.

Endometriosis is a disorder where uterine cells are found outside of the uterus. These cells are impacted by the same hormones as your menses. SO, every month these cells respond to estrogen and progesterone and swell, fill with blood and causes inflammation. Over time it leads to scar tissue. It also causes heavy menses, severe bleeding, abdominal pain, painful sex, etc. One of the biggest problems associated with endometriosis is infertility.  The scar tissue that is caused by endometriosis can act as a super glue in your abdominal cavity. It can cause your intestines to bind together. It can implant in the kidneys, ureter. It can infiltrate  the intestinal wall and cause intestinal bleeding. It can actually travel to your lungs and cause you to cough up blood, and further it can travel to the brain via the circulatory system and cause bleeding in the brain. However, it is most commonly found surround the uterus and the abdominal wall surrounding the uterus.

There is no cure for endometriosis, but the most common treatments are pregnancy, birth control, lupron, and hysterectomy. None of these treatments are 100% guaranteed, not even hysterectomy.

After my issues with endometriosis and my gallbladder were treated, I developed yet more symptoms. I still had issues with fatigue and abdominal pain, intestinal bleeding, hair loss, weight gain (or at least I couldn’t lose weight), muscle and joint pains, intestinal issues. Plus, I started developing tachycardia and shortness of breath.

I went through an ERCP and that specialist (an excellent doctor) determined my biliary duct was almost completely blocked. It was extremely swollen. I was also having issues with gastroparesis, gastritis, and slowing of my intestines.

After the ERCP, I felt better, but not perfect. My thyroid was still coming back low, but in the normal range.

In 2007, Tom and I decided to try to have a baby. We thought this would be a great way to manage the endometriosis without my having a hysterectomy. (I don’t do well with hormones and because I previously had superficial blood clots, I didn’t want to take a chance with birth control).

We actually got pregnant immediately, but at the 12 week mark, I had a miscarriage. I had never had a miscarriage before, and because my cousin had issues with Antiphospholipd syndrome. My cousin and I had very similar medical history’s. She had significantly more miscarriages than I, and over her trials and tribulations it was discovered that she had antiphopholipid syndrome.

Because we were practically twins (she’s a year older), but we grew up in the same area. We grew up together, played together. We were very close and had similar chemical exposures, so I asked my ob/gyn to run the testing for antiphospholipid panel.

It came back minimally positive.

I was sent to a hematologist who believed that my symptoms were being caused by acute intermittent porphyria. My 24 hour urine analysis showed a fairly significant elevation in uroporphyrins, but other tests like porphobilinogens came back normal. We tried for months to get a conclusive diagnosis for AIP, but my future tests came back normal.

Talk about frustrating.

I was still experiencing intestinal bleeding (intermittently). I was still having the fatigue and muscle aches, and all the other crazy symptoms.

SO, I decided it was time to see a rheumatologist. She found the elevations yet again in my APS antibodies. She ran several other autoimmune panels. Everything was normal except for APS.

At this time, I began to wonder how unlucky was I? Did I really have endometriosis, IBS, chronic fatigue (I had positive Epstein Bar antibodies), APS, and AIP? I also had developed tachycardia, palpitations, and hypertension.

I took the advice of my original GI and began to consult a psychologist. I think she believed that my issues were psychological at first, but after 12 months or so, I think she became convinced that even though being ill did stress me out, my health issues were real. She helped me to find ways to deal with the anxiety related to the issues.

After I became pregnant in 2007, I tried for 6 months to become pregnant again. It didn’t happen. It was at that time that I discovered I had hormone issues with FSH/LH. I wasn’t having an LH surge.

Luckily, it took one series of fertility treatments to become pregnant. My body just needed a nudge to get me pregnant.

I took Lovenox through out my pregnancy to treat the APS. Despite treatments, I did experience issues with the pregnancy. My little girl was growth restricted. I also had issues with amniotic fluid levels, and because of the growth restriction, Izabel was born at 36 1/2 weeks. She only weighed 4 lbs 12 oz. She was pretty small considering she was almost term. (There were no doubts about the dates I became pregnant because of the fertility treatments.)

I was not expecting it, but I became pregnant again 9 months later. I was shocked, but excited. We lost that baby at 10 weeks despite Lovenox treatments.

Miscarriage is hard, but we got through it.

The really surprising thing for me was that while I was pregnant I LOST weight. It was the first time in 6 years of trying to lose weight that I was successful. The truly unbelievable part of it was that I was NOT dieting. I was eating a TON of food each day. It was not uncommon for me to eat a huge steak dinner or an 8 oz hamburger, and I LOST weight.

It was at this time that I really began to realize that I had an issue with hormones.

After being sent to doctor after doctor at a major hospital for different issues like hypertension, the risk of blood clots, the fatigue, dizziness with standing and sitting. I was sent to one of the BEST doctors in the world Dr. Hatipoglu. She believed that my issues were probably hormone related. She felt even more so that my problems were due to high cortisol.

In the in between time, I had an abnormal scleroderma antibody test. Now, if you don’t know much about scleroderma, it’s pretty scary. I haven’t been conclusively diagnosed with scleroderma, but it has been suspected.

So, this made me wonder, WTF! Really, more disorders? Well, Dr. Hatipoglu explained it to me. We researched the uroporphyrins…guess what? Cushing’s can cause elevated uroporphyrins! Guess what else?! It can cause APS. When you have one autoimmune disease, it is not uncommon to have more than one. Guess what…It is normal to have both scleroderma and APS. Those who have scleroderma also generally have endometriosis.

Yes, so, it seems that Cushing’s Disease was the primary disease which is what caused the initial weight gain and other issues. Either, I had endometriosis to begin with (which is what I expect), and the Cushing’s and endometriosis together caused the autoimmune issues (APS for sure and possible scleroderma). I was also eventually diagnosed with hypothyroidism.

Some of my cortisol levels came back abnormally high, others came back normal. This is known as cyclic Cushings. After several months of cortisol testing, I went through a more accurate specific test to determine if my Cushing’s was being caused by a pituitary tumor. It’s called petrosal sinus sampling.

After having that procedure done, there was NO question that I had a pituitary tumor. My levels were significantly abnormal. There was no doubt that I Cushing’s Disease.

Finally everything was starting to make sense. I probably don’t have AIP, but I definitely have APS, Cushing’s Disease, and endometriosis.

(Not related to the pituitary/ Cushing’s issue–but they also found ulcerations in my small intestine and abnormal microvilli. I believe without question that these abnormalities are what has caused the intestinal bleeding. I also believe that it’s related to endometriosis. After years of trying to explain the intermittent intestinal bleeding, I had proof that I not only had it, but what it probably was.)

Eight years of illness was finally answered. I knew what the problems were. I knew what the solutions were, and I could at least fix the source of these medical issues. I could remove the pituitary tumor.

Despite being sick for years, I have never given up. Of course, I’ve felt overwhelmed. I’ve felt depressed at times, but I knew there were answers somewhere.

After finally having an answer, Cushing’s Disease, I believed that my life would finally change for the better. I felt that I would definitely be able to get into medical school. My future was beginning to look a bit brighter.

What happened next was completely unanticipated, hyponatremia. Now, I face one of the greatest challenges, one of the biggest hurdles. I wonder if the 8 years of ongoing illness was the warm up to this. Maybe, I had to go through all of this to be strong enough to get through the brain damage.

I don’t know, but that’s the beginning. That’s how I got to this point in my life.

Now that I’m on this mysterious leg of my journey, I wonder if I have the strength that I need to do what I need to do. I wonder if I have the ability to get back to where I need to be.

I feel my will power weakening. I feel doubt surfacing. I’m at a precipice in my life, and I wonder if I get away from it.

I will continue my posts on my CPM/EPM story by discussing how I got hyponatremia and how the inappropriate treatment has brought me to this point in my life.

Thank you for “listening” and thank you for your ongoing support. Please feel free to share your story. It’s important to healing.

To summarize:

Ok, I know I’ve covered a LOT of information over the past few weeks regarding hyponatremia.

There is so much information and it is very complex that it’s hard to not get confused and lost in reading it, so I’m going to try to summarize what I’ve discussed so far.

There at least five categories of hyponatremia: Hypovalemic, Euvolemic, Hypervolemic, Redistributive, and Pseudohyponatrmia.

The most commonly impacted people:

Infants due to diluted formula

Alcoholics

athletes (especially marathon runners)

Those who have liver cancer, liver damage, chirossis of the liver.

The elderly (usually due to malnutrition and dehydration)

Brain injuries, brain tumors

Transplant patients

Burn patients

Person’s who are receiving chemotherapy

Person’s with kidney disease and those who receive dialysis

Person’s who take certain medications like diuretics and anti depressants.

AID’s patients

Person’s who have pneumonia or flu

Anorexics and bulemics.

I’m sure I’m leaving about a dozen other groups affected, but you get the picture. It’s pretty common. Approximately, 1.5 million people are treated for it each year, and that’s probably a low number because I do not believe it includes persons who develop it while being treated for other conditions and develop hyponatremia as a secondary illness. I’ll try to find more information on that in the future.

Hyponatremia is extremely dangerous.  If your blood sodium levels drop very quickly in a 24 to 48 hour period (acute hyponatremia), your brainstem can herniate and/or your brain swells. This can lead to seizures, comas, and of course death.

If you develop chronic hyponatremia, (when your sodium levels drop over a period of 2 days to several weeks) you are less likely to have brain swelling or brainstem herniation, but you become at extremely great risk for developing Central Pontine Myelinolysis or Extrapontine myelinolysis.

The proper treatment is an absolute must. General IV fluids should be avoided if hyponatremia is suspected. Instead, an IV of saline solution ranging from .9% to 3% saline should be used. In some cases, fluid restriction will correct hyponatremia.

A person should have their sodium levels checked a minimum of every 2 to 4 hours.

If they are uncertain of the type of hyponatremia you have, then an MRI should be used to determine if there is cerebral swelling (swelling of the brain) or brainstem swelling. If there’s swelling present on the MRI, then you most likely have an acute form of hyponatremia.

If you have an acute form of hyponatremia, you are at a high risk of dying from immediate brain injury. Because of the risk, it is necessary to raise your blood sodium levels quickly to a safe level. It should be raised 2 to 4 mmol/L in 1 to 2 hours. However, once symptoms improve, the treatment should be halted for at least 24 to 48 hours. No matter what, levels should not be raised more than 15 mmol in 24 hours, in regards to acute hyponatremia.

If a person has chronic hyponatremia, they do not usually display the same severe symptoms. They usually feel sick. They might experience fatigue, nausea, have a severe headache, dizziness, loss of consciousness, delirium, etc. They do not usually have seizures, coma, or death. They are usually more alert compared to a person with acute hyponatremia.

The treatment for someone with chronic hyponatremia is signficantly different from acute hyponatremia because their sodium level MUST be raised slowly. It should be raised no more than .5 to 1 mmol/ L per hour. It should not be raised more than 8 to 10 mmol in a 24 hour period. Some even caution that it should be raised no more than 6 to 8 mmol per 24 hours. If it is raised faster than this, a person can develop Central Pontine Myelinolysis or Extrapontine Myelinolysis.

Expect to be in the ICU for 4 to 5 days at the very least if the treatment is being done correctly.

A person should NOT be given oral prescription medications along with IV saline solutions. The treatment should be fluid restriction if the hyponatremia is not severe or if it is a chronic form. If the fluid restriction does not work (with the chronic form), than a .9% solution should be started. If they have the acute form, then the 3% solution should be used first. Again, if the sodium levels begin to rise to a point where the symptoms begin to subside, then the treatments should be discontinued to see how the body responds.

If a person’s body is not responding to fluid restriction or IV saline solutions, then a person should be given the oral prescription medications. THEY SHOULD NOT BE GIVEN AT THE SAME TIME AS IV SALINE SOLUTIONS. IT SHOULD BE ONE OR THE OTHER–NOT BOTH.

I really think these are the most important aspects to hyponatremia. Please feel free to contact me if you have any questions or want more information over any of the topics I’ve posted so far. If you find out any relevant information regarding hyponatremia that you think I should include, PLEASE contact me or leave a message here. I REALLY appreciate your help.

Thank you for your support!

Hyponatremia: Other’s personal accounts and blogs

I want to encourage you to post your experience or notify me of blogs that you might find in regards to hyponatremia.

There is not much research regarding hyponatremia, especially when you compare it to other diseases and disorders. There is far fewer studies in regards to CPM/EPM. In order to get a better idea how CPM/EPM impacts people, both short term and long term. Your personal testimony is essential in getting awarness for this cause.

Ironically, I am including the link of a research scientist who was afflicted with CPM after a bought of hyponatremia. She developed hyponatremia after running the Vermont 100.

http://www.wvmtr.org/hyponatremia.htm

Please post them or email them to me, or if you have a problem getting them to post here, let me know. I am truly a blogging novice, so I am learning as I go. If you want to share your story here, I will do everything I can to make that happen.

 

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