Migraine Hell with Doctors that almost killed me!!! So Frustrated!!!!!

I had migraines in the past but very rarely and never predictable. Two and half monthly after marrying my soul mate, on Sunday March 11, 2012, I had a migraine that lasted 3 days. On Wednesday I went back to work for the rest of the week, not realizing this would be the last time I would ever sit at my desk again. On Sunday March 18, 2012, I awoke with a migraine that has never gone away!! That was over two years ago and we have yet to find something to get rid of this pain!

Now, my new husband has been thrown into the role of running me to Urgent Care, Emergency rooms, doctor’s appointments and calling my work for me. We had to cancel our honeymoon of a weeklong bicycle trip from Florence and Rome, we missed many family events, and our entire lives were upended due to my being in the bed, in a dark room for 80 % of the time! We just got married…..this is not how it’s supposed to be!!!!!! --- I also worked very hard to put myself through school to earn my MBA and had just gotten into my dream job, but because I can’t get out of the bed, out of the house, I had to quit my job!!!

My family doctor did his very best in this stressful situation and referred me to someone who he felt he could trust. Unfortunately this doctor referred me to a different pain group that he felt would do a better job for me. In the end this was the worst thing for me…..but of course hind sight is always 20/20. Since I was in such horrible pain, this group started me on several powerful medications….none of which seem to help the pain. Over the course of a year and a half, they diagnosed me with Major Depression with migraines, giving me countless different heavy doses of medications via pills, shots, and IVs, performing many different test, MRI’s, CT scans, a lumbar puncture, and even 5 ECT treatments. I kept telling them these were not working but they would not listen. I was not depressed; I hurt from the pain of the migraine!!!

The last straw came when they put me on two different MAOI’s which decreased my blood pressure causing me to fall and pass out when I would stand up…and again did not help with the pain. For 1 ½ months I used a walker, crawled on the floor to get around and had my husband and daughter help me to the restroom and shower because I couldn’t stand or walk on my own. After 2 ER visits (where my doctor insisted to the ER doctor that I stay on the medication) and a black eye that I didn’t know I had gotten (but apparently had happened one night during a fall), I had a morning that I passed out on David three times within a two hour time period and the pain of my migraine moved to a level I had never felt before. David called 911, then called my doctors to tell them I was headed to the hospital and he was NOT going to let me take those medications any longer!

I was in the hospital for a week where they determined the MAOI were the cause of the dizziness and took me off all of those medications. However they could not do anything else for the migraine, other than Topamax. They put me on a heart monitor for a month and gave me a follow up appointment in a month with a cardiologist just to make sure everything was truly ok with my heart and let me go home.

When I went to see my group of doctors in Indianapolis again they had a list of 7 medications they wanted me to take but said they would start them AFTER I saw the cardiologist because if there were any issues the cardiologist would just blame the medications. I said, “But the MAOI’s were the problem before?!!”. She scowled at me and wrote on my chart in red letters…’Patient refuses medications’. I was so mad!!! The doctors at the hospital finally took me off the medications that where killing me!!! They were doing nothing for my migraine!! They were lowering my blood pressure to dangerous levels that could take my life!!! My group doctors weren’t listening to me or even the doctors at the hospital!!! How frustrating!!!!!

Needless to say I am NOT going to the group doctors in Indianapolis anymore!!! I spent 1 ½ years with the wrong diagnosis, so drugged up I was like a zombie, on medications that did nothing to help my migraine, and now I’m back at square 1!!! I’m with a new neurologist, still with the constant pain, nausea, shaking, not the quality of life that I want for being newly married……and extremely frustrated!!!!

I know I’m not the only one in this situation and I’m sorry for using “my story” for venting but I do appreciate you for listening!!! It helps to know that you really do understand!!!

I would like to say that I have the best husband ever!! He has had to do things he never thought he would have to do yet :-) He is always patient and always jokes with me to try to make me smile. But he also stands up for me with the doctors or with getting me anything I need...like a light turned down or a changed in seating on plane if possible. He is my prince charming and I am so lucky!!! -- My daughter has also been just wonderful through all of this!!! She is my daughter but also my best friend and she knows exactly what I need before I even ask!! I don't know what I would do without these two!!!! I am very blessed to have them both!!!!

I hope that you all are lucky enough to have two people in your life as special as I do :-)

Many hugs to you all!!!