I hope you are doing well. It has been several days since I posted last. I could list several crazy reasons: I was in the hospital having a sleep study. They didn’t have WiFi at the hospital, so I couldn’t use my laptop. Tom was sick. However, honestly, the biggest reason is I didn’t know how to continue with this topic.
It might seem obvious that it is easy for me to get distracted and get off topic. (I hope not). I think my last post on CPM/EPM might have demonstrated this a little more than normal.
I covered a lot of material in my last post. Several of the topics I mentioned, I feel, could be made in to separate posts. I might try to do this at a later time, which means that I might have some topics come up more than once. Please be patient.
Okay, so CPM/EPM treatments:
There really aren’t any treatments, as far as a cure. You will find this information on any resource regarding CPM. For your convince, I’ve included this quote from, http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001779/.
There is no known cure for central pontine myelinolysis. Treatment is focused on relieving symptoms.
The following quote is from a study that suggests the following has been used in the treatment of it:
Case reports have suggested that steroids, intravenous immunoglobulin, and thyrotropin-releasing hormone may be helpful; however, there are no findings from a large-scale trial to support the use of these therapies.
You may be given prescriptions for movement disorders (tremors, shakes, twitches). These are usually the same type of drugs that treat parkinsons. You may be given pain meds. You might need to see a pain management specialist. You may need anti anxiety/anti depressants. You may need medicines for insomnia or for central nervous system sleep apnea.
You may need on going physical and occupational therapy. You will probably need speech therapy.
You will probably be given anti-depressants or anti- anxiety medicines because let’s face it, the pill you are forced to swallow is unbelievably bitter.
I know that sounds a bit scary. It is. It is terrifying because the doctors have no way to know what is going to happen to you, so they won’t be able to provide you with much information.
If they’re honest with you, they will tell you that you could slip into a coma at any point in time, die, or slip into something called locked in syndrome.
In a series of 44 patients, myelinolysis
occurred after a mean of 6.3 days (range 3–11)
and resulted in a “locked-in” syndrome in 23
The above information was provided by: http://www.ccjm.org/content/74/5/377.full.pdf
Personally, I think the locked in syndrome is the most terrifying because you will lose all ability to move. It’s a FULL body paralysis. The only thing that you will be able to move is your eyes, but you’re aware of what is happening.
Some studies state that you are at risk to develop these severe health issues (coma, death or locked in syndrome) up to 12 weeks after developing CPM/EPM. Other studies, suggest that it is up to 8 weeks. Frustratingly, there is not enough information regarding CPM/EPM to know for sure.
In most cases, the hospital will keep you under observation for at least 7 days depending on how severe your symptoms are. In other cases, you may be hospitalized for up to 21 days for observation. If you go into a coma or locked in syndrome, you may be hospitalized for 4 to 12 weeks, if not longer.
Here’s the thing, if you are being released in this 7 to 21 day period, I highly recommend that you remain in contact with your doctors that were monitoring your for the CPM/EPM. If you experience ANY changes after being discharged, GO TO THE ER. Err on the side of caution with CPM/EPM. Being wrong is better than being dead.
If you’ve developed CPM/EPM, you’re already unlucky. You’ve already fallen into the less than 1% to 5% range by developing it, and NO ONE really knows what will happen, so err on the side of caution if you experience ANYTHING that gives you concern.
I want to stress that it’s important to return to the hospital that was treating you because most hospitals have never treated a patient with CPM/EPM. Most doctors have only read about it in textbooks. If your hospital treated you, then they might have experience with it.
Your life has just been changed tremendously. If you’re reading this, then you are EXTREMELY luck and terribly unfortunate at the same time. You are terribly unfortunate in developing CPM, but EXTREMELY lucky that you are even alive.
It’s going to take time to adjust to your new abilities, and your journey is just beginning.
Now, here’s the thing. No ONE knows what is going to really happen with you.
Depending on the severity of your symptoms, you may improve significantly. Some research suggests that you may recover COMPLETELY. However, I question this on the basis that research is vague.
follow-up of 32 survivors of the acute phase of
central pontine myelinolysis, 11 had no functional deficit, 11 had minor neurologic
deficits, and 10 had severe deficits requiring
dependent (ie, long-term) care.
The above quote comes from the article used previously. Use the ccjm.org link above to access it.
The widely used study above suggests, that 1/3 of patients will recover, a 1/3 of patients will have symptoms but live independently, and a 1/3 will need to have assisted living.
This study was vague. It didn’t say how long the patients had CPM. Was it 3 months, 6 months, 10 years after developing it?
I would like to suggest that unless you die, you are going to improve. I would like to suggest that everyone who has CPM (except for those who die) will improve to some degree to an almost normal, pre-injury state. However, it is not known if this type of improvement is absolute or to what degree you will improve.
The study quoted above, also explained that depending upon the location of the lesions, a person might experience a decline in neurological abilities. I know several persons who have it, and after a period 2 to 3 years, they begin to experience a deterioration in their neurological symptoms.
Some studies have stated that the majority of persons who have CPM, die within 5 to 10 years after developing. More than half commit suicide.
Please be aware, if you are a care giver for someone who has CPM, that more than half commit suicide.
Because of this alarming statistic, I highly recommend getting your loved one supportive psychological therapy. I also recommend that they participate in online support groups.
Brain injury support groups offer a great help.
I looked for months, and found only a handful of people who have CPM through inspire.com. We’re kind of outcasts since there are so few of us, so we don’t really fit into any other neurological support groups.
I hope to change that at some point in time, but right now, please contact me with questions. Please post your story for others to read. Together, I hope we can prevent people from going through this horrible experience.
It is always depressing to learn that there are TREATMENTS for CPM/EPM, and to know that I could have been fixed if I received one of these treatments! I hope and pray that if you have CPM/EPM or know of someone who has been diagnosed that you will get this information during a period when it can provide relief. The following quote comes from an abstract, so if you provide this information to the doctor, they should be able to get the treatment information:
Neurological Department, Neurological Hospital Rosenhügel, Vienna, Austria.Although the exact pathogenesis of central pontine myelinolysis (CPM) is unknown, correction of hyponatremia, thyreotropin releasing hormone, plasmapheresis, and corticosteroids seem to be effective. Assuming intravenous immunoglobulins (IVIG) to also be effective in CPM, 0.4 g/kg body weight/d immunoglobulins were applied to a 48-year-old patient who developed CPM with double vision, dysarthria, dysphagia, and left-sided hemiparesis 3 weeks after spontaneous normalization of hyponatremia. After 5 days of IVIG, his symptoms markedly improved, confirmed by improvement in the Norris score (42%), Frenchay score (19%), Kurtzke score (20%), Disability score (54%), vital capacity (26%), and peak torque (69%). The promising clinical effect of IVIG was assumed to be caused by the reduction of myelinotoxic substances, the development of antimyelin antibodies, and the promotion of remyelination. In conclusion, IVIG appear to be a promising therapeutic option in CPM.