Dr. Diana, I am so glad that you posted about getting your hair washed at the hairdressers. I cannot lay my head back to have my hair washed. My hair dresser also has POTS and hypermobility (when she first started fainting and such, I told her that she might have what I have and she brought it up to her doctors and was diagnosed very quickly). She can’t have her hair washed like that any more either. We both end up really sick and it hurts our necks really bad. We lean our heads over the other way with our knees in the chair instead of our rear ends. It is really nice having someone else around that can understand what it is like. I even grew up with this girl. I hate that she also has it. I don’t know how on earth she continues to work and being upright all day long. I can’t do that.
For all the other posters who talked about the double vision and blurry vision, I also get that. It comes and goes throughout the day, but it is mostly when I am fatigued from over doing it or when I first wake up. I also see a lot of spots like white sparkly glitter or gnats or a big dark spot in my peripheral vision, strobe lights in the dark, and I lose my color vision/go completely blind for short periods of time. I sit when I go completely blind, because I assume that it is a precursor symptoms to a fainting spell. I actually really enjoy how neat the loss of color vision is. It usually happens after coming inside from being in the bright sun. I don’t know if that is normal or not. I have not had my eyes checked, but it is on my “to do list” if I can get my PCP to refer me (insurance needs a referral to pay for it).
I had an MRI today, since I have trigeminal neuralgia and glossopharyngeal neuralgia. The results will be back in two days, but I won’t know the results until January 7th, unless there is an emergency result in the MRI. I doubt that to be the case.
Most of my symptoms for the unusual stuff are on my right side. I have never closed one eye and then the next to see if my strange stuff is just in one eye or not. I will do that in the future. Thanks for that advice, guys.
I also have the ringing in my ears and hearing loss which I haven’t been tested for, though I keep bringing it up with the doctors. I guess they are just prioritizing my symptoms. Hearing loss isn’t as big of a deal as some of my other symptoms, like the excruciating pain in my face and neck. I don’t even bother to put headphones in my right ear any more because I can’t hear very well with it anyway. If I put the headphones in my right ear only, I need the volume to be all the way up. If I put the headphones in my left ear only, the volume can be medium level and I hear it just fine.
I have tried to be put on Diamox, but my PCP can’t prescribe it, because it would be used off label. She is actually a physician’s assistant so she can’t prescribe off label, but I really enjoy being seen by her. She believes my symptoms are real and spends a great deal of time with me during visits, so I am going to continue going to her. I need to find a doctor who can prescribe it though. I don’t really know how to bring getting prescribed Diamox to another doctor. I don’t even know which field of doctor I should ask. I might put my husband up to that task. 🙂