Thanks Dr. Diana, too many years now I’ve been dealing with this!!!!!!! I do have(what my doc thinks) is neurocardiogenic)** origin of autonomic dysfunction/ It just started 3 years ago…I just had 2 weeks ago,after years of complaining i might add, a heart monitor for 24 hrs. within minutes of being upright..my heart jumps to 120-140,& my local doc scheduled me for an appt. with Dr Eliot Wallack(philadelphia) 9 whole weeks after this was discovered NOT to be (figuratively) in my head. BUT I also have “acquired Chiari” & small brain stem srynx**I truly believe i have multiple spinal fluid leaks..outrageous pressure builds in my head,swollen optic discs & a funny thing happens, either i feel a sudden burning pain in the middle of my back(breaking through) OR weird sensation almost like it’s behind top part of my throat…then my left nostril starts leaking clear fluid & within minutes the “pressure feeling” is no where like it was minutes before….I’ve told this to 3 different local docs & they look at me like i’m nuts!!! Then the REAL fun begins….for days/sometimes weeks i can’t stand up for longer than a few mins. without the autonomic stuff… My question to you….How do we get these doctors to HEAR us??? & get them to believe that not EVERY patient that walks through their door is looking for attention,pain meds or needs anti-depressions drugs. I just can’t take it anymore …any advice would be appreciated! Dawn
Hi Dawn, You are among family here, as most of us can relate to what you are saying. Finding doctors is THE hardest part of dealing with this condition, I believe. You may be an “easier” case than most, though. 🙂 Do you still have swollen optic discs, my friend? If so, you have a “get Diamox for free” card! Diamox is the standard treatment for “pseudo-tumor cerebri” (or we also call it “idiopathic intracranial hypertension”). If you stay on Diamox (talk to your doctor about sulpha allergies, taking baking soda capsules, etc) you should relieve many of your symptoms. Then please check into mast cell disorders (which I believe are one cause of our hydrocephalus and I betcha’ that helps with those POTS symptoms). Diamox flies in the face of traditional treatment (especially with orthostatic intolerance), but remember, we are treating the CAUSE of the problems, not the symptoms. It can be a tap dance for a month or so, but then things start to line up. In our family, we were all able to avoid brain shunts, cervical fusions and Chiari surgery through medical management. I pray the same happens for you. We are here if you need us! Meanwhile, we are all familiar with trying to find doctors who will listen… I think we scare many of them just a little bit (which I understand). Big hug, Diana