Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

What was I thinking:

Ok, I hope you can relate to what I’m going to post tonight, but maybe you won’t. Here’s the thing, I really don’t know what’s “normal” or what’s not normal in regards to my experiences after brain injury.

I had another appointment with my cognitive therapist this week, and God bless her (Angela C.) I’m not sure how she does what she does because if her patients are anything like me, then there’s a whole lot of craziness that comes through her door each day 🙂

I really have to give her kudos because I don’t know what her “role” is in my actual therapy. She’s obviously there to help me rebuild or learn to navigate through the changes that have happened after my injury, but I swear I threw a curve ball by asking her about the emotional craziness I’ve been dealing with over the past 10 months. I have to say she not only handled my emotional unraveling with professional grace, but she provided me with excellent advice.

As I mentioned before, she is above and beyond what I could ever ask for, so much so that I both forward and slightly dread meeting with her.

Now, doesn’t that seem a bit contradictory? Nope not really..let me explain.

I love going to my sessions because I know I’m going to get somewhere, make a step forward that I need, but I also end up tearing up about 5 times during our 45 minute to hour long session, and if there’s anything I hate to do, it’s to lose control of my emotions in front of other people.

My last session with Angela was no different, and to make matters slightly worse, I confided in her regarding my somewhat lack of ability to control my impulses.

I developed the brain injury in June, and one of the first issues I experienced with impulse control was in September.

I very suddenly decided to go to Jeffrey’s funeral. (Jeffrey had CPM, and was a very big source of support for those of us who have CPM/EPM.) He died very unexpectedly from an issue related to CPM.

I wanted to go to his funeral, but it was a very long drive and I was not supposed to drive alone because of the neurological issues that I had. It was extremely dangerous, and I was going to be alone. It was overall not a great idea!

But, I decided to go and I went. Well, about an hour into my drive, I thought, it was going very well, and wouldn’t it be great to travel across the country.

So, I called Tom, and told him I wasn’t going to go just to the funeral, and that I didn’t know when I was going to be home. I wanted to visit family and friends and see things that I’ve always wanted to see, like the Grand Canyon.

I didn’t even have more than 2 days worth of clothes with me. I was only going to the funeral and then straight back home the next day.

There are so many absolutely crazy things with that decision, but to name a few; lack of money, traveling alone, not having clothes or toiletries, not knowing where I was going or where I was going to stay….really folks the list quite extensive on why this was an absolutely crazy thing to do. But at the time, it didn’t seem crazy at all.

Fast forward several months, and I was on the way to return something to a store with my son. There was a pet store that was on the way. We stopped inside. I had NO intention of buying a pet, but after an hour, we were walking out with a puppy and about $200 in puppy supplies.

Now, anyone in my family could tell you, this was nuts. I would never spend money like that on a pure breed dog, let alone GET a dog.

The list really does go on and on with decisions that I am constantly making every day that is beyond my old scope of reason, as well as my ongoing dwelling on decisions. It takes me at least 3 times as long to try to make a simple decision.

SO, I was sitting in front of Angela explaining all of my crazy impulse issues, along with my recent sudden decision to end my relationship with Tom, and wanting to know if I was losing it…was this normal? Were these issues being caused by the brain injury or am I losing my mind in other ways?

Now that has to be a hard question to answer.

Of course, I’m distraught. Over the past 10 months, I’ve felt like I don’t know who I am any more. I’m not sure what’s wrong with me. I don’t know if what I’m experiencing is “normal”, or if I’m losing my mind.

Has the brain injury changed me? Or am I changed because of the brain injury?

To me, it’s hard to distinguish between the two, so let me try to explain a little bit more about what exactly what I mean by that.

Having the brain injury change me, who I am and what I think, is something I can’t control. It’s something that I have to learn to manage and live with.

If I have changed because of the brain injury, then I am now making alternate, conscious decisions to do things differently because of some realization that my life is finite or live every day to the fullest type of mentality. I am in control. I am just choosing to do things differently because of the experience that I lived through.

I have always been a  very responsible person. I’ve always made decisions that are in the best of interest in my family or myself, but I am not doing that now. I’m struggling to control my actions or failing completely at controlling them, and this is all extremely stressful to me.

What’s happening?!

This is what I was asking Angela, and it’s a difficult for any person to answer let alone a person who has only seen you 4 times, but she handled the question with great tact, and she gave solid advice…which is why I give her major kudos. If someone approached me with a similar question, I don’t know if I would have been able to give them a great answer.

She does think there is a physical response to the brain injury and issues with dopamine receptors in the brain…and this makes sense because I have other issues with tremors, shakes, jerks, spasms that are also from the brain injury that are also linked to dopamine receptors in the brain.

However, she also said that there is probably a psychological “root” to my current impulse issue which she explained with such extreme accuracy that it makes me think she is psychic. Either she has access to a medical history that I didn’t think was available to anyone, or she is totally psychic because she so accurately described my history that I wondered if she was related to me in some secret way.

I really don’t know how she did it.

That said, she advised me to not make any impulsive decisions for awhile. She told me that I was going to have to tell my inner child, “NO”.

I really think that’s going to be easier said than done.

Now, I’m going to go a little bit more in depth to why I’m feeling especially crazy since the brain injury, and this is something that I didn’t discuss with Angela, but I really think it’s important to bring up before I forget it again.

In the past few months, I’ve had this emotional disconnect from things, and it’s something that I really can’t explain.

It’s this growing ability to get angry quickly as well as feel completely void of feeling at times when I should feel something.

When I was being treated for EPM in the hospital, I felt his overwhelming sense of compassion, understanding and love for everyone, but now, I feel this lack of feeling for things, but I also tend to experience periods of inappropriate tearing.

I don’t really “cry” a lot, but my eyes will well with “tears”. This happens a lot when I discuss personal issues with my boss, which is a time that I really don’t want to be on verge of crying.

Seriously, I have such a lack of control of this at this point. It seems I have no middle ground. Either, I feel nothing, feel completely angry or am on the verge of crying.

It’s such an extreme range of emotions, but the one emotion that I haven’t really felt since having this injury (outside of the hospital) is a sense of love or happiness.

Now, right now, I’m blaming this issue on Tom. I’ve convinced myself that I’m not happy because of the stress in my relationship with him, but I have to pause to wonder if what I’ve always said is true: the only person who can make you happy is you.

If that’s the truth, then why I am not I happy? Why are the only major emotions I feel right now anger or frustration? Why am I so irritable over every little thing? Why am I going pretty much from one extreme to the other? Is this being caused by the brain injury? And if so, how will I get past it?

I do believe the brain injury has something to do with it. I’ve read a lot about how people with EPM/CPM tend to experience a shift in their personalities, but I really don’t remember everything I’ve read about it, and I am finding less and less time to research 😦

That said, I am hoping to look into this further, but I also HATE to make excuses for my behavior. I really believe ultimately that people have control of their decisions, etc and how the act.

I would LOVE your feedback regarding this post because truly this is one of the things that really eats at me. Are you experiencing anything that is similar? Have you noticed changes in yourself or your loved one with CPM/EPM? Are all of the things I discussed tonight just happening to me?

Let me know!

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5 thoughts on “What was I thinking:

  1. Sarah, This is djmtard from Inspire. 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! Keep up the great work.

    • Doesn’t it feel good to know that you aren’t alone in this?! You’ve made me feel better about what I’m experiencing.

      Having CPM/EPM is a new experience for us, and we don’t have the ability to re-do this experience. At the same time, having CPM/EPM is really rare, so there’s not a lot of information regarding what happens to “us”. I think it’s important to tell our story so that others who develop it know what to expect. Plus, I really think it can be a support to us who have it now.

      Deb, I am very sorry that you’ve had to live through this, and I’m sorry that it’s impacting your family in such a devastating way.

      I think the best advice that my cognitive therapist gave is, get a psychologist on board to help you navigate what you’re experiencing and circumvent future disasters, and this is what I’m going to do. I also would recommend, even though you’re three years into your recovery, find a good cognitive therapist. They can’t help you figure out the psychological aspect of this symptom, but they can help you learn new ways of working with it, regarding impulse issues.

      I really have no idea why we are experiencing the emotional disconnect. (That’s what I’m going to call it for lack of better words). I wish I had more information to give that might help us get past it.

      It’s so frustrating to me, and I’m going to compare it to something like autism.

      I was with my family at the zoo several weeks back, and we were having a “good” time. Everything was perfect, beautiful weather..it wasn’t crowded, and we witnessed an experience that most people don’t get to see at the zoo…a leopard stalking a rabbit. At the time, I felt the excitement of the crowd, and I felt the anticipation of what’s going to happen next. Now, it’s as if it didn’t happen.

      I wouldn’t call it depression. It’s that I think more about an experience than I feel something about an experience. And it’s towards everything, my new puppy, my kids, Tom, my friends, my family…every experience I have. I actually find myself “acting” appropriately in my experiences, but it is just that “acting”. I know I should be feeling happiness, joy, contentment…but I find the only true emotions I feel is anger, frustration, and sadness.

      The last time I truly felt “love” and “happiness” was while I was in the hospital being treated for EPM/CPM, and at the time it was so poignant and overwhelming that I stopped to question my sanity. I thought at that time, boy I hope this lasts, but it hasn’t.

      I wish I had more answers than examples, Deb. But I really appreciate your sharing your experiences. I know it’s hard, and I promise to look more into this development and share as I learn.

      I hope this long rambling response gives you some sense of relief.

  2. Thanks Sara, I agree it is alot like autism. I used to work with adults with disabilites. Both DD and MI. I know in my head, how to react. But I try to get my mouth to stay shut and it won’t. I did do Cognetive therapy for as long as my insurance would pay for it. I have thought really long and hard about a psycologist. But, it’s one of those things I procrasdinate on. Sorry, for my typo’s, I know I am spelling the words wrong, but for the life of me can’t remember how to spell certain words. And, your right, the info on what your life is going to be like, just isn’t out there. The worst of it is, I don’t think this disease is as “rare” as we are led to believe. I think there are thousands more of us, but they don’t have the resources or the ability to reach out. I was lucky, you were lucky. If you can call this miserable existance “lucky” But, atleast we are able to function, even if it is “disfunctional”. All for now. Having a mental block again, have to put my happy face on, kids will be home soon. Deb

    • Hi, Deb.

      I think you are right. I think there are a lot more people out there who have CPM/EPM who don’t get diagnosed. I discussed that with my endocrinologist just a few days ago.

      The issue becomes that people might realize something is wrong, but if their hospital or doctor doesn’t do an MRI within a few weeks or a month, all the physical proof of the injury goes away.

      I really believe that there are more people out there with the injury that go undiagnosed.

      One thing you might want to check: you might have used all of your cognitive therapy sessions for a certain time period, but they tend to renew after a period of time. So, I used all of my therapy sessions last year, but at the start of the new year, my sessions renewed. Anyway, it’s just a thought.

      I know having this injury doesn’t give us a lot of answers, but I really think we can provide support to each other, and hopefully to people who develop it in the future.

      I know what it’s like, and I know it’s not easy. I haven’t faced the challenges for as long as you have Deb, and it’s a bit daunting when I think that this might be as good as it gets. I hope I have the fortitude and drive that you do after 3 years.

      Thank you for posting your comments, and please continue to give me your feedback and provide your experience.

      Have a great night!

      • Hi, Deb.

        I hope you have a chance to read this. It’s probably something you already know, but I wanted to get it listed before I forget.

        I have found several medical references for people who have CPM/EPM and brain injuries in general to have “disinhibition’. I didn’t know exactly what that meant, but thankfully-Wiki does:

        Disinhibition is a term in psychology used to describe a lack of restraint manifested in several ways, including disregard for social conventions, impulsivity, and poor risk assessment. Disinhibition affects motor, instinctual, emotional, cognitive and perceptual aspects with signs and symptoms similar to the diagnostic criteria for mania.

        An individual experiencing disinhibition may not be able to disguise some of their emotional responses, sometimes at the expense of politeness, sensitivity, or social appropriateness.[citation needed] Individuals under the influence of alcohol, for example, exhibit disinhibition in view of the depressant effect of alcohol on the brain’s higher functioning.

        If that isn’t us, I don’t know what is….

        Hope that helps!

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