Forum Replies Created
January 29, 2014 at 9:36 pm in reply to: The Driscoll Theory Validated — new video out! Comments? #4829
Thank you for your quick reply. I am hoping that the MRI sheds some light on the situation. Also, I will check with my daughter’s pediatrician about the Diamox. He was supposed to be reading up on it because he wasn’t familiar with using it that way. Maybe he can change her dosages.
Thank you!January 29, 2014 at 3:35 pm in reply to: The Driscoll Theory Validated — new video out! Comments? #4823
Ok. Now I just feel crazy. I feel like I am trying to diagnose and treat my daughter’s health problems and it is stressing me out!
After researching online for hours and hours, it seems that instead of high pressure in her head, I am starting to think that my daughter has LOW pressure (intracranial hypotension). I feel like she really could have a spontaneous low pressure, low csf volume headache, due to a csf leak. She and I distinctly remember how she used to constantly drip clear fluid from her nose when all of this started 3 years ago.
Her Cine MRI is 2 days away. My question is this: Isn’t the Driscoll Theory about HIGH pressure in the head due to the external communicating hydrocephalus? That is why the Diamox works, as it is a special type of diuretic. (right?) So if my daughter has LOW pressure might that explain why the Diamox is not working?
Am I completely off base here? She has been diagnosed with Chronic Daily Headache by the neurologist, but I just read about the use of epidural blood patches for spontaneous or idiopathic csf leaks. ???? This sounds like a possibility. I hope that the Cine MRI is capable of detecting a csf leak.
Anyone have any input about this suggestion?January 29, 2014 at 10:30 am in reply to: The Driscoll Theory Validated — new video out! Comments? #4822
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!January 27, 2014 at 11:49 pm in reply to: The Driscoll Theory Validated — new video out! Comments? #4810
I am so confused. I found out that my 17 year-old daughter’s MRI from 3 years ago shows a Chiari 1 malformation with a 5mm herniation. I was not given this information until a week ago when her pediatric neurologist called for the results since they haven’t been in her medical file for the past 3 years. He dismissed the chiari and subscribed an anti-depressant. (yeah, thanks.)
My daughter has had debilitating headaches/migraines for the past 3 years. With NO relief! It came on with a sinus infection and never went away. During this time she has had reconstructive surgery on both of her feet for “flexible flat feet”.
After researching chiari I came across information about Ehlers-Danlos syndrome, hypermobility. This is definitely her. Then I came across the Driscoll Theory and was so excited that maybe her headaches could go away by taking Diamox, and maybe avoiding possible decompression surgery. The only thing is, the Diamox isn’t working!!
I’m confused about the whole ph level aspect of all this. Can someone please explain? I watched the video(s) where Dr. Driscoll talked about using the baking soda pills. Shouldn’t my daughter have gotten some relief from the Diamox? It didn’t help at all. She has a Cine MRI ordered for this upcoming Friday (to measure her cerebral spinal fluid flow), and Duke University already said they would see her once we get that. HELP!!!!!!
By the way, I believe that she has POTS as well. Not sure about the mast cell though. Oh, and she is VERY exercise intolerant. Now that her feet are better we have tried to go on bike rides or do other forms of exercise and she ends up with such a bad headache she feels like her head is going to blow up! She is very light and sound sensitive too. No meds the doctors have given her for headaches/migraines have every worked.