After having emergency STA/MCA bypass in February, I'm left dealing with frequent symptoms. My surgeon calls them TIAs, my neurologist (and all my other docs) call them complex migraines. Regardless of what we call them, they are often debilitating and need treatment.

I was on Keppra for a few weeks after surgery, stopped due to lack of seizures. After several horribly painful "episodes" of headaches and inability to speak, I was started on Plavix. I did well until my aspirin was decreased to 81mg, at which time symptoms rapidly increases. I was prescribed Verapamil, but it dropped my blood pressure too much so it was quickly discontinued.

On my own I restarted full dose aspirin. My doc started Depakote and I got a lot of pressure from those around me to take it for complex migraine prevention.  I had read so many negative reviews about Depakote, that I initially refused and bottle sat untouched in my bathroom.  But, after a few particularly bad "episodes" I have in and started it (at 1/2 the prescribed dose).

Initially I felt fine, but the longer I take it, the more disconnected I feel. In worried because the feelings of fogginess, difficulty concentrating and disconnection with my surroundings keeps increasing.

I need advice from people who have been through this please. I'm feeling hopeless that I'm running out of options. I want, NEED, to work and be a productive member of society, but I'm struggling. I'd love to hear your struggles, successes and failures, as I feel very alone.

Thanks.

Hi, I'm CJ!  I'm 33, a new wife & homeowner, I work full time and live in Southern California. I'm so sorry to see how much you've been struggling.  Here's my story in a (kinda big) nutshell: 

I was diagnosed with MMD about 5 years ago.  I didn't know it at the time, but I suffered a small stroke that affected my left hand (sudden & complete numbness in 1/2 of my hand) but didn't think much of it since feeling came back after 15 mins.  About 2 weeks later I went to the doctor because of a strange and painful headache.  That visit lead to the first (of many, many to come) MRIs and other testing.  During this time, after the 1 very painful headache, I developed severe & frequent migraines, as well as very frequent TIAs.

Luckily I was able to get to UCLA fairly quickly (and after another month of many tests) and was given my MMD diagnosis.  Full dose Aspirin was prescribed, along with Depakote.  I don't remember the dosage, but I did take in full as my Neurologist prescribed and DID NOT like it.  I too, felt generally sullen, withdrawn and with no energy -- and my migraines didn't even get much better.  I asked my Neurologist to please find another solution for the migraines and he gave me Topamax.   

Tapamax worked very well for me, and with fewer side effects.  I'm told long-term use though can cause cloudiness.  (Eventually, I took myself off of it, just to see if I even needed it anymore -- and I didn't.)  My surgeries came very quickly after diagnosis and almost immediately I found relief from the migraines.  They were much less severe and much less frequent.   

It's been just over 5 years since my first stroke, 4 years & 8 months since my 1st surgery and 4 years 7 months since my 2nd and my life is pretty close to "normal" I'd say.  I take Aspirin every day (full strength) and do still get an occasional migraine; I've learned not getting a good, full night's sleep will cause one or also not drinking enough water.  But if & when they come, I'm able to manage them a little easier now, so I don't let it stress me out too much.

I feel like some of my memory skills have been compromised, mostly short-term memory as of late, but also a few things from years ago have just "fallen out of my head" too.  Also, recently I've started to slur just a bit and sometimes struggle with getting words off of "the tip of my tongue" when I speak.  I'm not sure if this is MMD related, or just part of aging.  (Not that I'm really that old.     )

This disease can be a difficult one because it's so rare, and most people don't understand it.  It's hard to know what is "normal" vs. what is case for worry.  And dealing with the side effects of medications is never fun.  However, I am sure there is always hope!  I was/am very blessed to be under great care at UCLA and I think that has made a world of difference.  They are very experienced with MMD there and both my Neurologist, Dr. David Libeskind and my Neurosurgeon, Dr. Nestor Gonzalez, are easily accessible by phone or email if I ever have an urgent (or not urgent)  question or concern. 

I'm not sure where in the country/world you are located, or what medical options you have, but my first question would be, "how much confidence and comfort do you have in your doctors?" because that, I believe, is crucial.  Also, keep in mind you are "only" 5+ months post surgery... it may be that it will simply take time to heal and feel the full rewards of the bypass.  I had the EDAS + burr hole procedures on both sides and my doctor signed me off of work for a year.  

For as long as this reply is, there are many other things I'm happy to share with you if you're interested, including the day I fainted and had a very bad "episode" myself (they thing it was a seizure) and the time my surgeon was so proud of my results that he asked me to speak at a benefit in front of 800+ people to tell my story.  So many highs and lows, but this is life and I'm happy to have it!

If you'd like, feel free to reply with any other questions or you can even email me directly at CJReilly33@gmail.com.

All the best,
CJ