Hyponatremia, Central Pontine Myelinolysis and Extrapontine Myelinolysis
Hi, I hope you are doing well. I am new to blogging. I’ve never had the time nor did I feel what I might have to say of particular interest.
Please bare with me as I try to learn how to do this. It might be rough sailing for the first few months.
I’m writing this blog because in 2011, I developed hyponatremia. If you are like me, I had no real idea what it is.
I have some medical experience (before my injury, I was preparing for medical school), so I had heard about hyponatremia, but I really didn’t know what having it meant.
My life changed dramatically, not directly from having it, but from not having it treated correctly.
My sodium levels were raised too quickly and this led to the development of Extrapontine myelinolysis (EPM).
I had no idea what EPM or Central Pontine Myelinolysis (CPM) was. I had no idea what it meant to have it.
This blog is dedicated to educating and spreading the word regarding hyponatremia, CPM ,and EPM. If we can prevent it from happening, we can save lives and stop the devastating consequences of mistreatment.
Please, help me spread the word by clicking the “like” buttons on my posts, by sharing my blog link with your friends and family via email and on Facebook, or by clicking the follow button at the bottom of my posts. By doing this, you help my blog become recognized by Google and other search engines so that people will finally be able to find the answers to their questions and support of those who share their injury.
Thank you,
SLM
Hyponatremia and Central Pontine Myelinolysis 
Hi everyone, it’s my first pay a visit at this site, and article is actually fruitful for me, keep up posting such articles or reviews.
Thank You. Were you looking for specific information regarding CPM/EPM or hyponatremia? Or have you been personally impacted by it? I’m trying to keep the content both medically relevant but also understandable to the general public. So your input would be GREATLY appreciated. I’m also happy to do research for you to help get answers you might not find here. Have a great night!
Hi, my name is David Austreng. In 1994 I had a surgery that compromised my pons – the top of the spinal cord. CPM is really a spinal cord issue. It effects everything as you move. I’m unsure why it’s not described as a spinal cord injury, because that is what it is. I’ve learned to manage my energy levels and get off ALL the medications. This has helped me greatly. It’s still a challenge when you want a day at the beach or some other ‘big day’ event. However, the spinal cord is amazing and research is finding that our myelin and nervous system has and does repair itself. We need more research on the MS features that it brings. Thank G-d for these amazing, self-healing bodies. Time does wonders….
Hi, David. I have to disagree with you. Your pontine is your brain stem. It is a central processing center for your entire body. It’s a very massive bundle, different channels, of white matter–nerve cell encased in myelin.
The spinal chord does branch down from the brain stem. It starts at approximately the C-1 vertebrae. Most of the time, damage to these areas tend to be life ending, but it really depends on the injury. To be more exact, the spinal chord also contains tracts of white matter, but it contains neuronal messages that travel from the brain to different parts of the body. The spinal chord doesn’t create the messages, it relays them.
I think this link might give a very good visual description as well as functional description of the pons. http://www.healthline.com/human-body-maps/pons
I think the following link gives a great description of the spinal chord, https://www.princeton.edu/~achaney/tmve/wiki100k/docs/Spinal_cord.html
In regards to repairing itself, I don’t know. There are people who regain function after spinal chord injuries. However, it seems that the “healing’ that occurs isn’t from myelin sheath repair but that the body is able to create new pathways. Our current imaging (MRI/CT’s/PET/fMRI’s) are certainly advanced compared to where we began (X-rays), but there is still so much that remains unseen by current imaging. It has been shown that people who have white matter injury still have white matter injury when autopsied. However, if you perform a MRI on the same person before their death, the imaging can/will show that the injury has resolved.
A few examples: With NFL players that have suffered from multiple concussions, there has not been an imaging that proves their injuries exist. After years of dealing with undiagnosed brain injuries, several football players have taken their lives while preserving their brains so that they can be studied. It isn’t until autopsy that the extent of the damage is detected.
Another example of how our neurological system adapts by creating new pathways: It wasn’t long ago that the treatment for people who were mentally unstable or who suffered from Epilepsy was partial or full lobotomy. At first, patients would lose most function on the opposite side of their bodies, but as time went on, they were able to regain function of that part of their body. It wasn’t that the brain “healed” that tissue or those connections, but the healthy portion of the brain began to create new pathways.
In that way, I do agree. Our bodies are absolutely amazing! I always remain hopeful that I will have a full recovery. No matter what, you can’t give up and have to keep pushing forward! Thank you for your input, and please keep us posted on how you are doing!
My father was hyponatremic for over a year. He got sepsis. I informed EMTs and gave them a note to give to ER stating such and that he should have gradual bolus not rapid or ODS may result. At ER RN assured no chance for ODS, that his sodium was normal, 135. All of a sudden. Weeks before it was 129. The hyponatremia had not normalized nor fluctuated before. 3/4ths into bolus, BP elevated (an hour later it was normal). As it turns out the EMTs had given him a bolus en route, that’s why ER draw was 135. Throughout the stay it was 134-5. After discharge he had abx for 6 wks with PICC IV that had sodium. Still, 134-135, and this even with salt diet. So now he’s still weak, sleeps a lot, has all over aches, is confused, difficulty swallowing which had before as strept throat was part of sepsis – all this stuff that could be related to sepsis and post-sepsis. AT follow up ID MD said that even the abx could cause those symptoms. There was a CT mid-hospitalization as he had a reaction one night they thought was stroke. In the past, a neuro said that he had brainstem ischemia. This CT, they said that there was no stroke, nothing new in there. He is a few points away from adrenal insufficiency (it’s familial) and loses salt and fluid so I’m hoping that it all has balanced out. That hospital’s endo refused to attribute the hyponatremia to his adrenals and refused to help plan for crisis. Your thoughts will be appreciated.
Hi there- I’m not sure why this didn’t post.
Ok- that said, I’m not a doctor, so anything I tell you is an opinion with experience. Though, there is a lot of research on my blog with research articles posted for reference.
Long standing hyponatremia does not require a rapid response. It does need to be raised slowly, but your father’s increase of 129 to 134/135 isn’t rapid. Rapid, in general, is considered 8+ points in less than 24 hours.
Now, that said, without knowing how low his sodium was upon arrival or before the start of an infusion, it would be difficult to know what the degree of change was.
In general, if he isn’t symptomatic of hyponatremia (muscle cramping, severe headache, stomach cramping, nausea, vomiting, diarrhea, confusion and/or seizures), I wouldn’t treat his hyponatremia. Considering he has a medical condition that leaves him with a lower level of sodium to start, his body should he accustomed to it.
If he actually did have central pontine myelinolysis, a CT scan would not detect it. In most cases, it can only be detected by MRI.
Due to your father’s previous health condition, it is possible that if his normal levels hover at 129, they might have raised his sodium levels too high for his system, which is just a dangerous as hyponatremia. In other words by raising it to 134/135, he might have become hypernatremic for his system.
A lot of physicians believe that every person should fit into their boxes of “normal”… and they don’t know how to treat a person appropriately when they aren’t in that normal range. In other words, they ignore the symptoms and focus only on numbers.
Considering your family history of hormone issues, if your father’s levels hover at 129, normal is 135 to 145. If he is asymptomatic at 129, then he doesn’t need to have his levels raised. If he is experiencing symptoms of hyponatremia, then he needs to be treated for it.
In regards to past strokes, obviously, I can’t determine that. I will say that with age, if he had a brainstem stroke, it is possible for it to get worse, especially with additional aggravation of changing sodium levels. Age makes any injury worse. Brain injuries are notorious for showing increased symptoms with age—consider retired NFL players.
Finally, if you feel believe that his doctors aren’t responding appropriately or thoroughly, you have every right to seek alternative care- in hospital or out- you can request different specialists and get other opinions.
I hope that helps.
Hi. I have CPM. It’s 2020 I hope you are still writing this blog. Please message me you have more information than anything I have found on the internet to help
Hi there Michaela, I’m sorry to hear of your misfortune. I haven’t posted in a considerable time because my ex gets a draft of my posts and I don’t have an option of unsubscribing him. I think I have figured a way around it though. I’m just going to make a second coordinating blog 😉
So stay tuned……. feel free to send comments here, and I will try to respond as quickly as possible
Hello,
I am working as a MD researcher in a hospital. Currently I am working on writing a case report about application of DBS in CPM alone (without EPM). Also I gathered some information about CPM alone cases and the treatment they have received. I would like to discuss it more with you (the blogger). Please feel free to contact me.
Tremor and it’s outcome in this CPM patient was the the topic.
Hi, there. Absolutely, I would be happy to discuss any information that I have, and I know many people with CPM, some of whom have shared their stories on my blog. I will try to reach you soon.
I am so pissed right now I could just vomit! My cousin hasn’t been feeling well for about a week, she kept going to doc’s and they kept telling her she had the flu! So, today she text me and was going in again because her blood work from tthe other day was “iffy”. So, she text me and her sodium was 130 and potasium was 3.2. But the doc didn’t seem worried. He told her to drink half gatorade and half water for the rest of the day and see how she feels! She is on blood pressure meds, and her blood pressure was very elevated. So, they upped her meds, and sent her home! What the hell is wrong with doc’s! Why do they blow off low sodium, knock, knock puddin heads! When I was visiting her in Feb, she was also not feeling well, so I had her take my sodium pills for a few days and drink Gatorade. Guess what, she felt better! Now I have her pulling all her labs from the last year so we ccan go over them on the phone! I’m thinking she has Chronic Hyponatremia, what a bunch of F*ckers!!!! Sorry for my harsh language, but this kind of thing gets my blood boiling! Deb
I am so sorry to hear that Deb. I know it’s unbelievably frustrating watching your friends or family go through something like this.
Here’s the thing to remember, there might be something else going on as well. If her blood pressure is going up and she has low sodium, she might have an issue with something like her kidneys. I would recommend that she see another doctor, but have her get copies of her blood work first, and of course, the doctor should be monitoring her sodium levels every few days to see where her sodium level is.
It is extremely surprising that she isn’t in the hospital right now, but maybe the doctors believe that her sodium levels can be corrected outside of the hospital.
I would be more concerned with why. Why is she developing hypertension and low sodium? Is it because of the blood pressure medication, which is very possible especially if they have her on diuretics.
I’m glad you are there for her, and I would direct her to a.) find a new doctor and b.) look up the medication that she’s taking online to see if hyponatremia is a side effect, and c.) if her symptoms persist or get worse, she obviously needs to go to an ER.
Please keep me informed, and I am so glad that she has you in her life to help keep her safe!!!
A sodium of one 130 is not critically low. 135-145 is normal range. If Doctors kept everyone who had a sodium of 130 all hospitals would be full 24/7; and critically ill patients would die waiting to get a bed. The problem is raising the sodium to fast with sodium pills, this is what can cause CPM. So the doc was being smart when he said half Gatorade with water…raises slower than with sodium pills. Also the sodium pills would raise her blood pressure higher. I agree she should be followed closely…but not be treated with sodium pills until you know what is causing the problem. I’m sure you did no harm, but if her sodium dropped into the 110-120s and you blindly gave her your sodium pills…CPM. Thanks for giving me brain damage!
Hi, Ryan. I didn’t realize that I hadn’t approved your comment. The sodium level of 130 is not “critically” low. If I stated it was, I apologize. However, a sodium level of 130 can cause dementia and illness. It really depends if it is a chronic (occurs over the course of 2-3 days) or an acute, (occurs in less than 24 hours) episode that tends to make the difference in whether the person should be hospitalized. For instance, a lot of older people do have sodium levels below 135 with no neurological or health impact. It is benign and asymptomatic.
The concern I had with Deb’s friend/relative is that they did not understand the cause of her hyponatremia, and Deb mentioned that her relative/friend had symptoms. BP medications can cause hyponatremia and for them to raise her BP meds before they determined what was causing her low sodium, could have caused her levels to drop further.
Also, the sodium pills that I was referring to were OTC sodium pills. Now, I wouldn’t recommend taking a whole bottle, but these sodium pills are OTC because they are relatively benign because they have to go through the GI system. Prescription sodium pills, like Samsca, on the other hand are known to raise sodium levels extremely rapidly and can lead to CPM/EPM.
In the end, I stand by my advice. Because her friend/relative had symptoms that are associated with hyponatremia, her sodium levels were below normal, she was on medications that can cause hyponatremia to develop rapidly, they didn’t know the cause of her low sodium levels, etc., I believe that she should have been hospitalized or to have had her levels monitored closely until they could determine what was causing them. I would have recommended Gatorade or drinks that contain sodium, but not water as that can also lower the sodium levels further.
But as you mentioned, if you do not treat hyponatremia correctly, sodium levels can drop further or increase too rapidly, and that’s why I believe symptomatic patients should be hospitalized until their levels return to normal.
As I recently reviewed the stats for hyponatremia, there were 2 million people hospitalized with hyponatremia as a secondary condition in 2012. There were about 100,000 to 110,000 people that were hospitalized for hyponatremia alone. I doubt all of those patients had a critically low sodium level of 110 to 120.
I do appreciate your feedback, and if you have a medical background as well, I would love to include any information you have on the topic on my site.
Thank you for your input.
She has had Hypertension for a few years now. She was just recently placed on this med because her other med wasn’t doing it’s job. This med does have a diuretic in it. When my sodium was on it’s plummit, my blood pressure also went up. Something to do with the increased strain on my heart due to my sodium going down rapidly. I have told her to go to another doc, she was going to go to the ER tonite and hopefully get some help. Unfortunately I can’t be there in person because she’s in Alabama and I’m in Minnesota. However, if she doesn’t get help by tomorrow I will be in my car on the way down. I will NOT let someone else get this terrible disease! Especially when it can so easily be prevented. I will keep you up to date as I hear anything.
I’m praying for her and you. Please keep me posted! Have a safe trip.
thank you so much for introducing yourself. I am so happy to meet you
Inflammation is perhaps the major medical issue of our time and the ability to diminish its risk will change the way we manage health in America / the World.”
“Of the ten leading causes of mortality in the United States, chronic, low-level inflammation contributes to the pathogenesis of at least seven. These include heart disease, cancer, chronic lower respiratory disease, stroke, Alzheimer’s disease, diabetes, and nephritis. ( http://www.lef.org/protocols/health_concerns/chronic_inflammation_01.htm) The danger of chronic, low-level inflammation is that its silent nature belies its destructive power.”
“A growing body of evidence suggests that inflammation may be linked to a host of other diseases, from heart attacks to Alzheimer’s to diabetes”
TIME Magazine, in a February, 2004 cover story entitled “ The Secret Killer: The Surprising Link between Inflammation and Heart Attacks, Cancer, Alzheimer’s and Other Diseases”, described chronic inflammation as the “engine that drives many of the most feared illnesses of middle and old age.” http://www.time.com/time/covers/0,16641,20040223,00.html
If you google hyponatremia inflammation you get a host of references.
Numerous human ailments are caused by chronic low grade inflammation associated with elevated NF-kB levels in the body.
The key is how to control this. There is a lot work that has been done and is being done right now.
Watch this:
Hi, Adam.
Thank you for the information. I have a cousin who owns a health food store. Her mom owned it before that. They have over 40 years of experience in the industry.
She has recommended a product for this it starts with an “n”, but I can’t recall the name of it. It’s produced by a company that I also can’t remember the name for sure- Andrew pharmaceuticals- maybe Arthur Andrew. Anyway, it eats away at the inflammation in the body, destroying scar tissue.
I only have used it limited lay because after awhile I get stomach pain, but then again I get stomach pain anyway, so not sure if it’s from the product or just me.
Once I get the name, I will pass it on to you. You might be interested in trying it.
Thanks for the information 🙂
More brain related studies out today related to MS Anatabine might mitigate active disease states in MS”
Meanwhile, given that bioequivalent plasma levels of anatabine can be reached with oral doses in humans, the present data suggest that anatabine might mitigate active disease states in MS and should be piloted in clinical studies.
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0055392
Jan. article on Anatabine. Link: https://www.dana.org/news/features/detail.aspx?id=40318
This is all about Anatabine which is main component in Anatabloc at 4,000 GNC stores
Some Clues to the Prevention and Treatment of TBI
By Kayt Sukel
January 22, 2013
On April 13, 2011, Oliver Hughes was on a mounted patrol in Afghanistan when his vehicle hit an improvised explosive device (IED). The major impact of the blast occurred right under his seat, crumpling the floor plates beneath the dashboard, pinning his legs below the knees. The force of the blast also slammed his head forward, shattering the tracker screens in front of him. Hughes’ physical injuries were severe—his right leg was crushed and the left leg was torn off below the knee. But he also suffered more invisible wounds. More than a year after his injury, Hughes’ wife, Megan, reports that he shows classic symptoms of a traumatic brain injury (TBI), with difficulties focusing on tasks and remembering appointments.
Stories like Hughes’ are not that uncommon. And with the Department of Defense (DoD) reporting that tens of thousands of U.S. military personnel will be diagnosed with TBI each year, neuroscientists are trying to identify new compounds that could prevent the chronic cognitive and behavioral problems that often follow head injury.
Treatment at the Point of Injury
Since the start of the wars in Iraq and Afghanistan, the number of reported TBI cases in the U.S. military has jumped nearly five-fold.
“Currently, we’re seeing about 30,000 service members each year who have sustained a concussion or traumatic brain injury,” says Donald Marion, a neurosurgeon and clinical consultant at the Defense and Veterans Brain Injury Center. “Fortunately, the majority of those individuals end up doing fairly well. But many will suffer long-term consequences of their injury.”
Those consequences may include cognitive problems with memory and attention, personality changes, anxiety and depressive disorders, and even thoughts of suicide. While it remains unclear what types of head injuries will result in what types of problems, research does suggest that the earlier a potential injury is diagnosed and treated, the better the outcome will be. This is why, Marion says, the DoD is using a new decision-tree method, called the Military Acute Concussion Evaluation (MACE), to evaluate service members suspected of having any type of head injury.
“Groups of service members out in the field will not have a medical doctor with them. They’ll have a Corpsman or a Combat Medic serving with them. While these medics receive intensive training, they can’t be expected to know all the same things that a neurologist might know,” says Marion. “The MACE tool lets them just go through the decision-tree and evaluate any service member who has been around an IED or blast and determine whether or not they’ve had a concussion and how severe that concussion might be.”
Still, Marion concedes, there are many cases where service members sustain multiple serious injuries—and the medic’s job is to stabilize the patient for transfer, not assess their cognitive skills. In Hughes’ case, his TBI evaluation did not occur until about two weeks after his initial injury—after he was already transferred out of Afghanistan and on heavy pain medication for his injuries. That’s a missed opportunity: If researchers could identify novel drugs or compounds that could be given within four to six hours after injury, it’s possible that the long-term consequences of head injury might be avoided altogether.
The Promise of Anatabine
David Loane, a scientist at the Center for Shock, Trauma, and Anesthesiology Research (STAR) at the University of Maryland, says new research suggests that TBI results in chronic microglia activation, which changes the brain’s white matter. “We’re beginning to see that microglia activation and neuroinflammation is a chronic pathology that’s associated with TBI,” he says. “It’s a progressive and chronic disorder that continues indefinitely after the initial traumatic insult.”
Given that inflammatory pathways are so significantly affected, Fiona Crawford, a researcher at the Roskamp Institute, wondered if some of the long-term damage, particularly memory problems, could be avoided by using a compound that dampens the brain’s natural inflammatory response. She and her colleagues had already found evidence that anatabine, a dietary supplement found in tobacco leaves, tomatoes, and eggplant, was a powerful anti-inflammatory agent.
The group compared mice with brain injuries after being given anatabine versus a placebo. When they were put into the Barnes Maze task, a tool to measure spatial learning and memory, the mice who had received the anatabine after TBI performed as well as uninjured mice. Crawford presented the research at the Society for Neuroscience’s annual meeting in 2012.
“The anatabine appears to mitigate the neurobehavioral deficits that were the consequence of the head injury,” says Crawford. “It makes sense, in terms of the fact that we know that inflammation is a big part of the response to head injury and that, by mitigating some of the detrimental effects of neuroinflammation, we might be able to improve the behavioral outcomes.”
Moving Forward
Crawford cautions that her data is very preliminary, but she believes it holds great promise. She plans to continue testing anatabine, hoping it will eventually make it to human clinical trials. Still, while the data are interesting, Loane says, it pays to be cautious about what such supplements can actually do.
“There’s never going to be a magic bullet kind of approach for therapy when it comes to head injuries because there are so many different second injury mechanisms that occur after the initial impact,” says Loane. “The biggest challenge in treating TBI is the heterogeneity of those secondary injuries. There are multiple pathways that are affected.”
Still, Megan Hughes, wife of Oliver Hughes, is hopeful that researchers will find something that can ease, if not prevent, the long-term effects of traumatic brain injury—especially for people like her husband.
“I think it’s important for them to be treated in theater, not to wait. [Oliver’s] definitely lost something,” she says. “And the loss of brain function is scarier to him than the loss of his limb. I see so many soldiers come back different people. They come back so different and their families fall apart. If supplements and immediate treatment could help, we need to know that. We need that research.”
my sodium went down to 117 last July 2012. Have not been feeling well since. Current in July 2013 was in hospital again with low sodium of 122. The doctors keep telling me I do not have CPM. But I have weird symptons in my head . I get pressure in my head and then it will go away. then I have awful pain. It feels like something is sticking and burning inside my head and when I move it up and down the pain just radiates. Is this symptoms of CPM or EPM??
Hi, Marilyn.
Thank you for contacting me. It is very difficult to determine, but I would say it sounds like a neurological structural problem or autoimmune issue. It sounds like something along the lines of migraines, chiari malformation, etc.
Generally, the first symptoms of CPM are inability to swallow, problems speaking, motion problems, paralysis, etc.
That said, when you have low sodium, you will have severe headaches, HORRIBLE headaches. It is because your brain stem is swelling. This would not be detected in a MRI but would be found in a CT scan.
I would not hesitate in going to a neurologist at a different hospital, and definitely keep looking for answers. There is definitely something going on, especially since you have developed hyponatremia more than once. Please feel free to ask me more questions. I will be happy to help as much as I can.
Have a great night!
Dear bloggers,
I am a young and relatively healthy lad, struggling though with some weight problems.
In order to shed some pounds, I decided to go on a strict protein diet, no carbs and no fats.
I have experience with these diets, though this year I’ve started without any proper sodium supplementation, for three days by now..
On top of that, I’ve drunk 20 liters of water during those first 3 days. (Bare in mind that I can drink up to 4-5 liters a day though because of my heavy weight.)
Then I remembered the dangers of water intoxication from in high school biology. (I’m a law student, not a med student :p). I wanted to make up for the lost sodium and ate some plain salt and quite a lot of cheese.
When I studied this matter a little further I realised what type of risk I took. I was quite amazed that something like CPM could be a consequence of some sodium decreases and increases.
Should I be concerned? Does it take long for chronic hyponatremia to establish itself in the first place? I certainly don’t have any symptoms of acute hyponatremia. (Before my diet I did consume a sodium-rich diet, lots of Frenh cheeses and chips, etc. .. if you know what I mean.)
To avoid any CPM is it advised to avoid any salt for a day or two? What should I do next?
Thank you and the best of luck, conquering and avoiding this terrible and unfortunately unknown disease.
Kind regards,
Adrian
My father had hypernatremia started 2 weeks ago. It was 104 when he was admitted to neuro hospital and it fluctuated for a week. They gave NS and saline and Tolsmas for helping increase Na and K levels. All was infused using IV. Now he has developed EPM as per doctor and he can’t swallow and talk and move. Doctor says as per MRI done, he has inflammation in his brain. Doctor says it will be few months for recovery. I see that you recovered from CPM/EPM. Can u advise what medications helped you recover quick and full? Any alternative medication??? Please advise
I’d love to hear some updates on your condition. I was diagnosed with CPM two months ago.
I was diagnosed with CPM about three years ago. I had started to feel numbness in my feet and legs. Finally, I laid down and never got back up. I was drinking quite a bit and dieting at the same time not realizing what a devastating effect I was causing my body. Eventually I would drink to kill the pain of burning and stinging in my legs like knives piercing my feet and legs. I quit drinking and starting taking pain killers. Believe it or not, it helped me tremendously. I was able to manage the pain and even though doctors said that no real opiate type pain killer would help… it did. I was able to get up after being bed ridden for a year and walk albeit slowly. Once I started moving I didn’t stop and grew stronger. I’m back at work again, remarried and living, although the pain is still tremendous some times. If not for my father I wouldn’t be here. He took care of me for over a year dong things no father should have to do for their 30 year old child… man… now child again. I lost him the next year but he saw me live again and I promised myself I’d never ever let him down.
Don’t let anyone tell you what works and does not work. Even after being diagnosed, laying on my back for a year and a half almost and bouncing back I’m still finding new ways to cope. My feet are still mostly numb, hurt from being on them much and neropothy will likely never go away… neither will I… easily at least. Nothing easy is ever worth having and while the pain and loss of quality of life – impacting, the lack of most to understand is even worse. I hope some day there is a solution for those in my situation. Staying proactively healthy is always the answer to most every health problem. Either way. If anyone ever reads this… stay strong. Don’t give up. Because there IS someone else out there just like you. You CAN do it.
Thank you Cory! I tell you, your story is an inspiration! I agree with you entirely. I think if you don’t use something, you lose it, and even minimal to moderate exercise whenever possible is one of the best ways to recover.
I hope you have great insurance. If you do, you might look into physical therapy and occupational therapy. I’ve also been told that hydrotherapy is another great way to recover motor function.
I suffer from small cell neuropathy as well, so I get the tingling and numbness too. I don’t have a great answer for it, but movement and heat sometimes helps to make it more bearable.
I also get cramping too in my hands, feet, well everywhere actually. This gets worse with repetitive movements. I’ve tried gabapentin and baclofen to help with it, and it does help along with carbidopa/levodopa. I have recently made a lot of changes to my diet to try to make my health is optimal as possible. I can’t say with certainty that there has been an impact, but I remain hopeful and optimistic.
Please feel free to leave additional feedback when you are able. Your story is inspiring.
Hello, this is very useful site.
My doctors could not figure out I had hypoatremia. I tried to check my symtoms online and thought low sodium may be cause. After that, I put 1 tsp of salt in water and drank it. I felt much better. This was 6 months. Few days after fixing problem and making sure to get sodium in diet and after work outs, I realized I have some sort of weakness/fatigue in body. I feel fatigued all day and sleep a lot. I don’t want to get up to go to gym.
Sometime I feel I’ll fall.
Could this be symptom of cpm or epm?
My blood sodium is normal now.
Hi!
I want to emphasize that I’m not a doctor, but this doesn’t sound like CPM or EPM. I would recommend having your thyroid hormones checked. Even if your thyroid hormones fall in a normal range, you can have sub clinical hypothyroidism.
It could also be host of other things…. Epstein Barr Virus (or other viral infection), chronic fatigue syndrome, mononucleosis. It could be anemia.
I would highly recommend following up with your doctor as soon as possible to narrow down the possibilities.
In the mean time, try taking a multi-vitamin and multi mineral supplement along with a probiotic and extra vitamin C.
I hope that helps!
good to know it’s not epm/cpm. now i am very careful of my diet. I read online that everybody talks about “choosing low sodium” but nobody talks about how much low and what is minimum. My symptoms improve when I take 75 mg of iron supplement in night. Next morning i don’t feel that much weakness. but my doctor says having slightly low iron numbers should not cause so much weakness. I had few points lower than minimum. I wish best for everybody. My personal experience says 1 gram of niacin, 15g of fish oil daily is good for brain. Not sure if this will help in cpm/epm case.
Hi!
Low iron can cause anemia which can make you feel fatigued and weak, but I would still recommend having your thyroid hormones checked and have them check for infection, especially viral infections.
Trust in you. If you don’t feel well, go to the doctor to get checked out. Little things can turn into larger health problems down the road.
Best of luck! 🙂
Hi,
I’m posting here because I came across your blog after doing a Google search for “Neprinol” and “Brain Injury”. Look, I’m someone who has suffered sharp head pain along with strong feelings of inflammation and congestion in their head for the past 18 years. It started one night in 1997 after a bad family argument, and I felt like something ruptured in my head, creating a “sore spot” which has persisted ever since then. Of course I went to the doctor right away, and was sent for CAT scan and later MRI – both of which apparently found nothing. In the absence of a conclusive diagnosis, I’ve been stuck fighting this problem on my own. Recently, I heard about Neprinol and tried it — let me tell you that the effects on me were very dramatic. After taking my first capsule of Neprinol in July of this year, my “sore spot” in my head began throbbing and tingling very strongly. The next day, my “sore spot” felt like it had healed slightly. I have continued taking the Neprinol every day, and have continued seeing incremental benefits every day. Without a medical diagnosis as a basis for conventional pharmacological prescription treatments, all I can do is rely on this Neprinol as an Over-the-Counter solution (ie. “self-help”).
I need to know more about this Neprinol stuff, but don’t know where to go. I am looking for others who have tried Neprinol, particularly in connection with brain injuries, to learn what else they’ve tried that’s worked for them. Thanks for reading this, and I’m grateful for an email reply back.
Hi,
I’m posting here because I came across your blog after doing a Google search for “Neprinol” and “Brain Injury”. Look, I’m someone who has suffered sharp head pain along with strong feelings of inflammation and congestion in their head for the past 18 years. It started one night in 1997 after a bad family argument, and I felt like something ruptured in my head, creating a “sore spot” which has persisted ever since then. Of course I went to the doctor right away, and was sent for CAT scan and later MRI – both of which apparently found nothing. In the absence of a conclusive diagnosis, I’ve been stuck fighting this problem on my own. Recently, I heard about Neprinol and tried it — let me tell you that the effects on me were very dramatic. After taking my first capsule of Neprinol in July of this year, my “sore spot” in my head began throbbing and tingling very strongly. The next day, my “sore spot” felt like it had healed slightly. I have continued taking the Neprinol every day, and have continued seeing incremental benefits every day. Without a medical diagnosis as a basis for conventional pharmacological prescription treatments, all I can do is rely on this Neprinol as an Over-the-Counter solution (ie. “self-help”).
I need to know more about this Neprinol stuff, but don’t know where to go. I am looking for others who have tried Neprinol, particularly in connection with brain injuries, to learn what else they’ve tried that’s worked for them. Thanks for reading this, and I’m grateful for an email reply back.
Hi!
I want to start out by saying that I’m not a doctor.
I would recommend taking your MRI films to another doctor, preferably one who deals with something called Chiari malformation.
If you have never gotten a copy of your report, then I recommend getting one and reading over it.
There are a lot of doctors who don’t tell you the real findings because they don’t think that the findings are responsible.
For instance, I had a lot of issues with shortness of breath, chest pain, palpitations, etc. A CT scan showed that there was a pericardial cyst resting on my heart. According to my doctor, the scan was normal. After getting the report, I realized that there was something there. After researching it, I found that it could be the problem for everything. The doctors told me that I was born with it, but recently I found that the cyst wasn’t present of previous scans. In other words, I wasn’t born with it.
Chiari malformations can be genetic or aquired. They can be just barely present with less than 5mm depth. Some radiologists won’t even report them when they are that small. This is why I would get a copy of your actual film and take it to a qualified chiari specialist.
It might not have anything to do with a chiari malformation, but getting a second opinion never hurts.
On to Neprinol:
Neprinol dissolves scar tissue. I believe it actually breaks down microscopic scar tissue. It would lead me to believe, that if you’ve had an approvement in symptoms, that there was an injury to your head/neck at some point.
I hope that helps.
Please feel free to contact me with any questions, and I will try to assist further.
Hi,
My father has recently been diagnosed with EPM after his Sodium levels were raised rapidly.
Can you please advise, what kind of care & medicines should I look for and how long was it until you recovered? What were the symptoms?
I am really feeling frustrated and if I could get your email to talk to you in detail about this, I would really appreciate it.
Thanks
Guru
Hi!
There are treatments listed on this blog. Just go to the search box and enter treatments. Here are a few: plasmapheresis, TRH treatment, immunoglobulin therapy, hyperbaric oxygen treatment, etc.
I have had a lot of symptoms….balance issues, swallowing problems, short term memory issues, cramping, tremors, twitches, insomnia, attention issues, tinnitus, blurry vision, speech issues. It’s harder to complete sentences or thoughts, muscle weakness, numbness and tingling, etc.
It’s extremely frustrating, but with physical, occupational, and other therapy, you can get through this.
Sadly, he will never be the same, but you can learn to live with the new version.
Please feel free to contact me with any questions!
Hi there,
I was finally diagnosed with CPM in September of 2015. This came after numbness and gait issues which first presented in early 2012. After extensive blood work, I was told I had a severely low B12, and needed daily injections, and was given 2 blood transfusions. My Dr. believes this all stems back to gastric bypass surgery I had in 2005 in which I weighed 340 lbs, but in April 2012 I weighed 150lbs. After the transfusions and b12 injections, my energy level seemed better but my gait did not improve, and continued to get worse. By July 2012, I became incontinent, and on July 11, 2012, I fell and was unable to get up again. I was taken by ambulance to the hospital where I spent 3 weeks with all kinds of Drs. trying to diagnose me, including the head of neurology who followed my case from the emergency room and for the next 2 years. While in the hospital, I had hallucinations, and contracted sepsis, was in ICU for days, and was subjected to a port being implanted to my heart to give me high dosage vitamin and mineral infusions for 6 weeks after discharge. I was discharged in to an inpatient rehab to teach me to drag myself around on a walker and use a wheelchair. My neurologist put me on pain killers and 2700mg Neurontin a day claiming that I had damaged the myelin sheath in the nerves from the waist down and that they would eventually heal and would walk again. After 2 years of enduring this and not getting any better, she discharged me from her care and I was sent to the chief of Neurophysiology. He did a full MRI of my spine to find out I had severe disc herniations. I was immediately scheduled for surgery January 2015 to correct damage between C6-7, and spent 2 more weeks in the hospital rehab to recover. After that surgery, the neurosurgeon scheduled me for thoracic fusions from T8-12, removing the discs impinging my spinal cord and inserting 8 more pins and 2 rods in to my back. Once again, I spent to more weeks in the hospital rehab getting me up and “walking” again. After a few months, when I still hadn’t revived any feeling in my legs except for excruciating pain, numbness, tingling, burning, etc., as usual, my neurophysiologist wanted to do a brain MRI. To check for lesions thinking I might have MS. What he found was one lesion in my pins, and diagnosed me with CPM. He said I should have had an MRI when I was first admitted into the hospital in 2012, which I didn’t. He told me that CPM is caused by sodium treatment after hyponatremia, and told me it would never get better and I would just have to treat the chronic symptoms with pain killers, gabapentin, and Baclofen for the rest of my life including ongoing physical therapy, possibly Botox to relieve muscle tension, etc. After researching CPM, I now know this is not a natural disease and that it’s caused by a medical mistake of giving me sodium too quickly. My best friend’s husband is an attorney and I gave him authorization to look at my medical records from my initial intake in to the emergency room and care in the hospital for 3 weeks. It’s been 3 months and the hospital cannot locate my records. I also called my insurance company, and they can’t find a bill from them either for my care. Does this seem strange to anyone? I must also add, I was treated by an Ivy League hospital which employs some of the best Drs. in the US. , and I am still in the care of them. So, am I being given the appropriate medicines and care for CPM, and is there any hope for me in the future? I am female, 38 years old, and through my husband, have wonderful health insurance. Is there anything I can suggest to my neurophysiologist for possible treatment? Any advice given would be helpful. Thank you all for reading my story.
-lost in medical la la land
Hi, Amanda!
First, I am so sorry you are going through this!
I would have to guess that you actually developed hyponatremia after gastric bypass, but it’s absolutely impossible to know for sure without going through your medical records. Hopefully, they didn’t destroy records of your bypass. I would start there if I were you.
The reason I say that is because you’re usually given iv fluids etc during that time, and because of the rapid fluctuation in weight, push of liquids, etc. I would expect you had a shift in electrolytes.
That is what you should search–you need to look at low sodium and potassium levels.
Now, usually, CPM/EPM occurs with specific and severe symptoms, and if you have excellent doctors, they know what that condition looks like.
The type of myelin damage that occurs in CPM also occurs identically in carbon monoxide poisoning.
So, I would check your home for carbon monoxide–or if you visited any place during the time frame your symptoms became apparent.
If it is CPM/EPM, the first issues a person usually experiences is with swallowing and speech–not being able to use words correctly, followed by gait issues, balance issues, then paralysis.
Long term, people experience numbness and tingling, cramping of all muscles randomly, twitches, jerks, tremors, shakes, and other movements similar to Parkinson’s. There also tends to be insomnia, chewing and swallowing issues, and short term memory loss.
Did you experience any of these issues at any time since your gastric bypass?
If so, that’s where I would start looking–about 1 week before those symptoms presented, and you would search for potassium and sodium.
People can and do get worse over time. Usually, you have the event. Then there is an initial period of improvement. Then after about 18 months to 2 years, you can see a degression.
I would work hard at physical therapy, aquatic therapy, boxing, etc. even though you have some to full paralysis, you need to have movements, and continue them everyday.
It’s said that things like bicycling, boxing, aquatic therapy can retrain your brain….it rewires your pathways.
Baclofen and gabapentin are good drugs for CPM/EPM, and if you have uncontrolled movements, I would also recommend carbidopa/levodopa.
You could also try to do the other therapies–immunoglobulin treatments, plasmapheresis, and hyperbaric oxygen treatment. The problem is given the length of time that has passed, you probably won’t get insurance to pay for it. And it would be most likely be considered experimental.
I would also focus on brain building supplements–fish oils, omega 3 fatty acids, vitamin B’s, there are also enzymes.
My suspicion is that you’re in the phase of decline. This happens because your autoimmune system is in a constant state to try to repair the damage that occurred. However, in doing repair, it creates scar tissue formation. Your immune system sees this as injury, and then tries to repair that–it’s a cascade effect–repair-scar tissue formation that causes more damage- and repair.
It is suspicious and unusual for hospital records to go missing, but it is far from surprising–sadly. A lot of hospitals went from paper records to digital, I would contact the records department for the hospital, don’t tell them anything about your story and ask when they went from paper records to digital.
They were supposed to keep the hard copy of records when they transitioned. These records are usually stored in a basement, and then after so many years, they can get rid of them. They might still exist depending on when this transition took place. Most records departments HATE searching through the archived paper files because it is far more tedious.
Ask them this without giving information about yourself….if you had a lawyer attempt to get records, your chart has been flagged. This makes getting any information way more difficult.
I hope that helps. Please feel free to contact me at any time, and I will try to help more.
Have a blessed day!
Hello, Can you please email me? I desperately need your help. Thanks!
My mother has been diagnosed with CPM. She has had a lifelong issue with alcohol.she hasn’t had any rehydration issues or Iv fluids. 12 weeks ago she had an episode of severe confusion and was taken to hospital. They did an MRI They diagnosed a small stroke and sent her home. 3 days later she had severe confusion , mania,disinhibition etc . Her symptoms were very dementia like.
She was readmitted to hospital (psychiatric ward).initially she was treated for bi polar . However her symptoms , confusion, incontinence,memory loss etc continued getting continually worse. She is apathetic, her cognitive ability is severely reduced, doubly incontinent and cannot engage in conversation . She has periods of extreme irritation . Currently she hasn’t been too physically affected and is still mobile and able to walk,talk etc but the hospital have told me she will severely decline physically and the prognosis is extremely poor .
I cannot find anything online that will give me an idea of what the likely progress/timeline is likely to be . Any information or advice would be greatly appreciated .
Sam
Hi- I’m sorry to hear about your mom.
When was she diagnosed?
If it’s recently, there are treatments for CPM/ EPM that can reverse it completely.
Most doctors do not know this!
Thyrotropin Releasing Hormone (TRH)
Immunoglobulins
Plasmapharesis
Hyperbaric oxygen treatment
There are a few others–search treatments on my blog to find more.
The prognosis is variable. There are so many factors that can contribute to recovery, like secondary conditions.
Please feel free to reach out to me with further questions.
She was diagnosed in the last week. She has no physical difficulties so far , although the doctors have warned us this will happen . She hasn’t presented in the typical way -and currently only has the mental symptoms. My question is how quickly will the physical symptoms occur ? Will she definitely have a physical decline as well ? There is nothing available on google that fits her presentation of the issue.
I keep hoping the doctors are wrong , but everything I read about cpm makes for very poor prognosis. The doctors have been giving her thiamine supplements , but otherwise I don’t think they are doing any other treatment .apparently her MRI scan shows a totally typical image of cpm . Any information you can give me about cpm that presents this way would be greatly appreciated . I just want to prepare myself for the road ahead.
Ok- so her symptoms will and condition will be impacted by where the demyelination occurred.
No, she might not become fully paralyzed. Her condition may or may not deteriorate from this point.
It sounds like her injury took place in the putamen or basal ganglia….or she can have damage in both the pons and outside of it.
Injuries to the putamen or basal ganglia generally have more psychiatric changes–mood changes, sleep disturbances, giddiness, biting people, etc- speech and movement issues. Locked in syndrome is more common if the demyelination occurs in the pons.
However, no matter where the injury has occurred- it can be FIXED- REVERSED.
You HAVE to demand Thyrotropin Releasing Hormone therapy- I believe that is one of the more cost effective treatments that insurances will cover.
Demand it.
If you don’t do one of the treatment options, I have mentioned, she could get worse, but there is no way to know if she will–and her condition can worsen at any point over a considerable period.
You also have significant limitations on recovery.
Do the treatments I have listed—she can make a complete recovery.
Don’t do anything- and you are playing Russian roulette.
There are plenty of medical research articles written about complete recovery using the treatment options I have previously mentioned.
If the doctors say there aren’t any treatments, tell them to check: TRH treatment for CPM.
And they can do that for any of the treatments I’ve written about.
Hm. I left post regarding my Dad having chronic hyonatremia, then sepsis,…When I came back to check, my post remained with the awaiting moderation response. Now, moderation note and post are gone. Does anyone know a helpful link or reference?