CPM/EPM: Count your blessings:
I realize that if you are reading this, then you have most likely been impacted by hyponatremia and/or CPM/EPM. For that, I am sorry. With the information I have found in the months since I was injured from it, I am absolutely certain that this can be avoided!
If you haven’t been impacted by it yet, thank you for being proactive in learning about it. As you age, you are more at risk for it, and it becomes more likely that you will have a more difficult time recovering from it. To put it bluntly, you are at an extremely high risk of perishing from it, the older you are.
I guess that’s true of everything, but if you have knowledge of what this is and how it should be prevented you have a better chance of surviving.
One day, I hope that awareness will become so universal that hyponatremia and CPM/EPM will be prevented from ever happening. Please make this one of your missions too. It takes just a few seconds to hit the “like” button or to send this link to your friends or family members. Getting the word out is what will save lives!
So, if you have been impacted by hyponatremia, I hope you aren’t facing CPM/EPM. In my previous posts, I listed the symptoms that impact most people who are injured.
I also touched briefly on the widely unknown measures that can be used to reverse the consequences of having your sodium levels raised too quickly and the widely unknown treatment options.
If you are not one of the ones fortunate to escape the devastating harm of the brain injury, I want to stress to you; you are not alone! As long as I’m able, I will try to help you.
I find one of the hardest things to do when you’ve been inflicted with CPM/EPM is to count your blessings. When I was diagnosed with it, I felt vindicated. I had returned to the hospital that had treated me 3 times to try to get help. I won’t go into great detail here regarding my story, but I was basically looked at as if I was on fire. I was turned away from the ER twice with the diagnosis of a migraine, and the third time I went back to the same hospital (with significant impairment), they wouldn’t do the MRI that I needed and requested. Instead, they wanted to admit me to the hospital for further observation.
As I mentioned previously, CPM/EPM can be life threatening. I was demonstrating obvious problems, something akin to having a stroke, and they weren’t taking immediate action. I decided to go to a different hospital at that point. I hoped the bigger more prestigious hospital would be more equipped to handling the situation, as well since they didn’t cause the problem, so they would be more likely to diagnosis a problem they didn’t create. I was right.
When I found that I had CPM/EPM, I was terrified. When I had started to develop my first symptoms, swallowing issues and speech problems, I knew what was wrong, but I didn’t know very much about it at all.
I had just read the generic stuff online, and it was pretty scary. It said that I could go into a coma, die, or develop locked in syndrome. Once I knew I had EPM, each day that I woke up, I felt more and more grateful.
I’m alive and I’m not a vegetable. At the same time, I was absolutely terrified because these new changes were significant.
How would I be able to survive as this new me?
My doctors and my friends and family were incredibly optimistic, but as they saw improvements, I saw the differences, the changes, the difficulties.
I have to say with 110% conviction, IT IS EASIER FOR THEM TO SAY IT!
You are LIVING it. That said, I AM living with it too, and I can tell you with absolute certainty, unless you die, you will see improvements. It’s a matter of degree.
I can not guarantee that if you were in a coma for 3 weeks or suffered from locked in syndrome for 6 weeks, that you will ever be running marathons or even doing basic math in your head, but you are here and you are important and you can expect improvements.
Give yourself time, and continue to do what you’re doing, making an effort to get yourself help and to find support. Contact me if you need me.
There are online support groups that can help you. You can find people, normal people, struggling every day with the same problems you are, and there is nothing better than to know you are not alone.
Your friends and family probably don’t get it, and frankly, most of them don’t want to hear about it. Don’t judge them for that. In most cases, they just don’t know what to do or say. Seriously, before you became ill, would you act any differently?
That said, I know a few people who have it. I consider you part of my family if you have it. You have a private pass to my club. 🙂 And I will do anything I can to help you.
So, now you have one more blessing to add to your list.
Here’s the thing, if you do have this, and you are like me. You’ll feel better knowing that there is at least one more person out there who has it. You aren’t completely alone, but that only goes so far. It doesn’t take the sting out of not knowing how YOU will be impacted by CPM/EPM.
Frankly, it’s depressing. It’s scary. It’s hard. I was diagnosed six months ago, and I’m still having issues. TRUST ME, my symptoms have improved greatly from where I was, but not being 100% back to my former self is difficult.
Trust me, there are days when I do cry. There are days when I want to go back to the hospital that treated me, and I want to SCREAM at the doctors.
I’m giving you permission to be angry, upset, cry, yell. It’s a benefit of being a member of my club, BUT what I refuse to let you do, is give up. You are not allowed to give up or give in, NO MATTER, how desperately you want to.
Further more, if you ever feel the urge that you just can’t handle it another day. You’ve had all the twitches and stutters you can take, I want you to promise me that you will get help!
You have to promise me that if one day becomes just too difficult to take that you will go to an ER, call a friend, and/or click on the link below:
http://www.ulifeline.org/main/page/53/SuicidePrevention?gclid=CI6dzPXYya0CFcvCKgod-F6sIg
You can actually seek help via online chat:
http://www.preventsuicide.us/hopeline-new/aliveim/index.html
You can always reach out to me as well. I’m here for you, and I KNOW how it feels.
With my next post, I promise to bring more information regarding CPM/EPM…like maybe how the symptoms can impact you or the doctors that you can reach for more help, experts if you can consider them that (they have at least heard of it).
Many blessings!
Hyponatremia and Central Pontine Myelinolysis 