Has anyone's primary EM progressed to the head causing chronic microangiopathic disease in the brain? My family physician had me have an MRI done about 7 months ago and they found some lesions. I recently had my 6 month MRI follow up and the new results were mild lesion changes caused either by migraines or chronic microangiopathic disease. When I looked this disease up I found it is a small vessel disease. I have tried to tell the Neurologist I have EM and he persists on treating me for migraines. I strongly believe the constant pressure in my head and the occasional immense headaches (preceded with a rush a warmth that runs up the back of my neck when I have been too active) is all cause from the EM. I am worried and could use any feedback, advise, etc. Can this cause damage to the brain? will it progress as the EM progresses? How will it be bearable?
Also, I looked up the 2 different treatments the neurologist has tried to put me on for migraines, topiramate and vitamin b2. My understanding of the treatment for migraines is it opens up the vessels to allow more blood flow because migraines are caused from the vessels restricting. Is this an accurate understanding? So wouldn't the treatment for migraines only make the EM worse? help!?
Thank you for the responses. The neurologist is only treating me for migraines. His statement when I told him I have EM was "oh, that's a terrible disease". But that was all. I even asked him if the EM could be causing my head issues and I did not receive a coherent response. It doesn't help that there is a communication barrier due to him not speaking very good English.
And I do not currently have a team of doctors or even 1 doctor right now treating me for EM. The Rheumatologist who diagnosed me said there is no treatment and told me to "live with it". The neurologist does not consider my EM in his assessment and is only focusing on migraines.
My family physician is trying to help me with the pain but has stated the disease and symptoms are beyond her capabilities and she is waiting for me to find a doctor who can take over. I have not had any luck finding a doctor that my insurance will cover. I am a single mother and am still trying to hold on to my job and maintain. Once I start going to the Mayo Clinic or the University of Rochester I will more than likely lose my job and will not be able to take care of my girls. This is not a good time for me. I need 3-5 more years of good health.
I do appreciate your suggestion and will talk with my family physician about starting trials of the standard meds. Has there been any improvement with Lycrica or Cumbalta for anyone?
I want to apologize for whining. It is out of character for me. I wish this didn't happen to anyone.
I will gladly keep in touch. Thanks so much for the support.
Migraines happen when there is vasodilation, so treatment is aimed at keeping the vessels constricted or preventing triggers I.e. Botox to calm muscle tension. It’s the opposite of what you were thinking, which is good for EM patients
I am so sorry Kay. Finding a doctor that can help you is one of the hardest parts of this crazy thing! It isn't uncommon for there not to be anyone in the area that even knows what it is. I am currently in that same boat but have learned to work around it. I Have found a doctor that isn't familiar with EM but is willing to read the research papers I print out and bring in and prescribes me the various treatments available.
We are still working on finding the right thing for me but at least we are working on it! I Read up on this site what is helping others then I find research papers on the treatment I would like to try next and print that out to bring to my doctor. My Em has a mind of it's own and gets better and worse on its own from day to day and month to month so I generally try a treatment for a good 3 months before I decide if it is helping or not and I see my doctor every three months to reevaluate and make any changes necessary.
Maybe your GP will be willing to work with you in this manner. If not you could try seeing another Doctor and bring them printed information on EM , Explain your situation and see if they are willing to work with you. If that doesn't work then it's time to try another! I know it sounds like a lot but you do what you have to do. I myself went through a few Doctors before finding the right one for me. I hope it doesn't take you so many and your GP you have now will be willing to help once he has the information in his hands needed for him to make informed decisions on your treatment.
Hang in there Kay.
Take care,
Alina Kay said:
Thank you for the responses. The neurologist is only treating me for migraines. His statement when I told him I have EM was "oh, that's a terrible disease". But that was all. I even asked him if the EM could be causing my head issues and I did not receive a coherent response. It doesn't help that there is a communication barrier due to him not speaking very good English.
And I do not currently have a team of doctors or even 1 doctor right now treating me for EM. The Rheumatologist who diagnosed me said there is no treatment and told me to "live with it". The neurologist does not consider my EM in his assessment and is only focusing on migraines.
My family physician is trying to help me with the pain but has stated the disease and symptoms are beyond her capabilities and she is waiting for me to find a doctor who can take over. I have not had any luck finding a doctor that my insurance will cover. I am a single mother and am still trying to hold on to my job and maintain. Once I start going to the Mayo Clinic or the University of Rochester I will more than likely lose my job and will not be able to take care of my girls. This is not a good time for me. I need 3-5 more years of good health.
