I was really nervous about going to yet another doctor. What was she like? Was she going to think I was crazy? Because I was already feeling pretty crazy by this point!!!
She was great....she still is great, I am still seeing her. She also suffers from migraines, so she actually takes what I say to heart.
Well, we discussed my symptoms, length and severity of the migraines, past history of illnesses...the whole nine yards. This where the "home pharmacy" begins.....She started me out on Neurotin and Verapamil along with some samples of Maxalt, to see if these will work on my migraines....the answer to that is no, at least not for mine. Then we moved on to a different set of meds. I can't really remember the order in which I was placed on and pulled off of some of these, but the list keeps growing.
At this time, February, 2011, I am on Topamax, Fioricet, Stadol and Zanaflex....In the past few months I have been on Zoloft (side effect of Topamax can be depression, oh joy!!!), then that was changed to Cymbalta, which made me nauseous everyday so that is no longer an option. Soma which was changed to the Zanaflex because it works different and my muscle spasms have gotten worse. The list goes on and on. Now, mind you, as of this date and time, these still have not gotten me past my migraines or muscle spasms.
The doctor said that I have what is referred to as Status Migranosis, which means a continual migraine. Since my surgery in October, I have had a total of 5 days without a migraine and those are not back to back days. And they have been after I was given a 3 day regimen of meds to take to try and break the cycle. Well, it works...after the third day, I am usually migraine free. Come the fourth day I am right back where I started.
She also told me that chances are, the reason my Chiari became "active" is due to the fusion surgery I had previously. Remember? Where they had to put me in a harness and pull back in alignment? Any who. The wonderful thing about my Neurologist now, is that she is trying to help me get my disability. She has already told me and "them" that there is no possible way I can work with the pain I am in and the loss of balance I have at times.....She knows I'm not crazy!!!!! The pain I feel is real...
Just a note: always remember that just because someone doesn't "look" sick doesn't mean they aren't. To look at me, you can't tell I have a condition that is debilitating, but I do and it is just as important to spread the word about it as it is for any other serious, life threatening condition.
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