Dr. Diana,
Thanks for replying so quickly. I agree that it is curious about my daughter having her symptoms after her sinus infection. What’s even more interesting is that I got the sinus infection at the same time and we had the EXACT same symptoms! Headache, eye pain that prevented us from being able to read anything, extreme sensitivity to sound and light. We would both freak out when commercials came on while we were watching t.v. (too sick to do anything else and couldn’t get off the couch) because they were so loud. I was pregnant at the time. I got extremely dizzy. I had a difficult time grocery shopping because I was so nauseous and dizzy. I constantly felt like I was literally going to pass out.
Fast forward 3-4 months and I was doing much better, but my daughter wasn’t. By the end of the pregnancy all of my symptoms were mostly gone. So why did my state of pregnancy seemingly pull me out of the symptoms while my daughter was still sick? (She was 14 at the time.) I have since noticed POTS symptoms creeping back in addition to a lot of facial pain in my sinus areas without any sinus symptoms. My daughter definitely has Ehlers-Danlos syndrome, and I believe that I do too because I have always been extremely hyperflexible. But other than plantar fasciitis in my feet I haven’t had the problems like her; the flat feet (feet surgeries) and a dislocated knee. We both have body aches and pains but hers seem to be much worse. And I’ve notice that she is very affected by changes in the weather. Is it possible she got something from both sides of the family that makes hers worse? Also, my other daughter (a half sister to my other daughter) is hyperflexible but doesn’t show problems with that, other than the fact that she has had gastrointestinal problems since she was 4. (had an endoscopy at 4 that showed mild esophagitis.) The GI docs can’t figure out any problem, so we gave up with them. And now she gets these weird spells where she looks GREY and says she feels nauseous and like she’s going to pass out, and shakey. I believe that all three of us have POTS symptoms.
UGH! It’s difficult now because I’m tired and not feeling well much of the time and don’t have a lot of energy to figure out what’s going on with all of us. My question since the last post has to do with the Diamox again. You stated that a lot of doctors don’t get the dosages right. My daughter’s pediatrician is awesome, and he had no problem prescribing my daughter the Diamox. He gave her 125mg, once a day, 20 pills to start. He wasn’t familiar with using the Diamox for these symptoms. How can he change the dosage to find a good fit for my daughter? He is very open-minded. Also, I am going to start her on the zyrtec/zantec regimen as well.
Thanks for listening!