Stupid doc and lots of migraines

Sorry I have been MIA. July was unpleasant. I had 24 days with migraines. I also had a doctor's appointment with the specialist I see for the neurogenic orthostatic hypotension (NOH). In a nutshell, NOH is a partial failure of the autonomic nervous system. My body fails to regulate my blood pressure and pulse correctly. My blood pressure drops in response to various activities such as standing in line, standing up, bending over, heat, eating a big meal, not being hydrated, being ill, et cetera. The symptoms I experience include light-headedness, tunnel vision, losing my vision, losing my balance (and fainting rarely), ears pop, confusion, nausea, fatigue, and headache. I'm sure there are more but you get the idea.

I have been seeing this doc for about 5 years, and I went to see him for my annual checkup last week. Because I had a migraine the morning I went to see him, I had taken DHE. One of the side effects of DHE is that it increases a person's blood pressure. In doing so it masks the NOH. He insisted that the DHE could not do that. Evidently he hasn't looked at the side effects list lately. He decided I no longer have NOH even though he'd confirmed the diagnosis for NOH the last 5 years and I still have symptoms. I've had NOH for 27 years--many of those years without migraines. My doc decided I haave migraine-associated vertigo. So basically he thinks my symptoms of light-headedness, dizziness, and drops in my blood pressure when I change postures are all symptoms of migraines. I have gone years between migraines in the past and still had the NOH, but he was not interested in discussing that. I also have gone through autonomic nervous system testing which showed I have NOH. So he scheduled me for more testing. 

Keep in mind, I do not see him for migraines. He advised me to begin taking DHE (the med I take when I get migraines) 3x a day even when I don't have migraines. That would cost $260 a week. He sent a copy of his new diagnosis  and his med idea to my migraine specialist. The nurse from the migraine specialist's office called and advised me not to follow his recommendations and my migraine doc will be having a phone consultation with me later in the week. 

All this to say, I am worn out and frustrated. I know the migraines are getting better in some ways. I only had 1 severe migraine last month instead of the 2 I normally get. In addition, DHE has more effective at ridding me of migraine symptoms. In addition, I have been able to take lower doses of DHE to do so. At the same time, it takes very little for me to get a migraine. A few loud noises or bright light and whammo I have a migraine.  I'm trying to stay positive. 


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