Treatments: NEW INFORMATION
Ok folks, I’m really hoping to keep this post short and sweet.
My last post had information regarding treatments for CPM/EPM. Guess what, I have found new information suggesting there are treatment options for CPM/EPM.
I was shocked to discover that once your sodium levels have been corrected too quickly, you are not destined to CPM/EPM. You doctor has the ability to PREVENT CPM/EPM AFTER your levels have been corrected too quickly. Research has shown that there is an approximate 5 DAY window in which your doctors can LOWER your sodium levels back to abnormal, approximately 120. If they do this after your levels were raised too quickly, within 5 days, CPM/EPM can be avoided!!!
The above information was discussed as early as 2005 and 2007: http://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/104/6/56.pdf and again in : http://www.ccjm.org/content/74/5/377.full.pdf and again in:
This type of treatment has been extremely successful in preventing CPM/EPM. I DO NOT UNDERSTAND WHY DOCTORS DON’T KNOW THIS or DO NOT PRACTICE THIS. I’m really at a loss over why my doctors, who admitted to me that they raised my levels too quickly, did not have the knowledge to do this. It turns my stomach to think that this might not be COMMON knowledge among doctors. WOW.
Since this might not be common knowledge among doctors, PLEASE take it upon yourself to inform them if you are in this situation. You might be able to prevent your brain damage after all!
That said, I also found additional treatment options! I went to one of the major teaching hospitals in this country for treatment of my CPM/EPM, and they DID NOT offer this! They told me that there were NO TREATMENT OPTIONS. Imagine my shock and dismay at finding research to the contrary. It really makes me sick to my stomach to think not only could this have been COMPLETELY PREVENTED, it could have been TREATED. 😦
That said, these treatments have not been clinically proven to work. There haven’t been any control group studies.
I mean, here’s the thing, CPM/EPM is uncommon. It’s not like heart disease or cancer where people can enroll in studies to test therapies, so your doctor may or may not know about these treatments. If they know about them, they are not going to suggest you forgo the treatment since it hasn’t been studied in a controlled study. They will suggest to do the treatment. If you don’t do the treatment, you have an approximate 67% probability of having some type of neurological deficit for the rest of your life.
The research studies did not report ANY side effects (I’m sure there are), so proceeding with these unstudied/ unproven treatments would be the best thing. Furthermore, all of the case studies that were listed had a 100% recovery when given the treatments.
In other words, there needs to be more research regarding CPM/EPM, but in the mean time, if you are facing permanent neurological issues, try these treatments that have shown effective in treating the brain damage. What do you have to lose???!
Here are the additional treatments that I did not mention previously:
1.) plasmaphoresis
2.) TRH (thyrotropin releasing hormone)
3.) immunoglobulins
4.) methylprednisolone (the cleveland clinic journal also listed dexamethasone, but it did not provide information regarding its effectiveness.)
This information comes from :http://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/104/6/56.pdf
It has also been reported in several additional journals.
There are also natural remedies that have been recommended. I will post more information on possible natural treatments as well.
Please feel free to post any information you have in regards to treatments you might have been given for CPM/EPM.
Thank you for reading!
Hyponatremia and Central Pontine Myelinolysis 