- This topic has 1 reply, 2 voices, and was last updated 10 months, 3 weeks ago by .
- You must be logged in to reply to this topic.
My son is 3 years post decompression and C1-C2 cervical fusion for Chiari 1 malformation and craniocervical instability and 1.5 years post cervical revision C1-C3. His main symptom has always been debilitating vertigo caused by oscillopsia. These episodes last 3-5 days. And can recur every 1-4 weeks. The drs are stumped and are not very helpful. He has hyper mobile EDS. He also gets extreme fatigue during these episodes. He may have IBS as he has a lot of gas and gas several bowel movements a day. He has had high anxiety most of his life. He has had the vertigo since age 3.
My current thinking, after reading Dr Driscoll’s theories, is that he is having issues with intracranial pressure fluctuations. He has never been told he has high intracranial pressure, but the ebb and flow of his symptoms makes me wonder. He does not have POTS, ear or eye issues (he has seen ENT and neuro- ophthalmologist). So, I am wondering if the parasym plus helps with Intracranial pressure?? He took diamox in the past and it helped his symptoms, but then stopped working. We recently tried it again, but after 6 days he became suicidal and he had to stop. This was very disappointing as it was helping his symptoms! I also wonder if the vagus nerve support would help with the frequent BM’s- it seems like that is more designed for constipation??
Hi Chiarimom, I’m so sorry to hear of your son’s struggles! This is complicated and because I hear of so many struggling with these sorts of questions, I will be releasing some videos soon about this. It takes picking apart the pieces very carefully. At the webinar-type videos I will also discuss how maintaining a certain pH level may help keep Diamox working (there is information in The Driscoll Theory for you). You may want to look into Thera pH (at http://www.VagusNerveSupport.com) that can help, too. Gentle hugs to you both, Dr. D
This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.
“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”
-- Chris Gross