Post decompression for Chiari still getting episodes of oscillopsia and associated vertigo
Posted: 24 June 2019 11:23 AM   [ Ignore ]  
Total Posts:  1
Joined  2019-06-24

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??

Thank you!

Posted: 18 July 2019 01:00 PM   [ Ignore ]   [ # 1 ]  
Total Posts:  1421
Joined  2011-04-19

Hi ChiariMom, I’m so sorry that your son is suffering so much. :( As a mom whose kids were sick, I know how hard it is to stand by and feel helpless. What I would do is pull out the chapter on Diamox Pearls in the book. It discusses how Diamox can cause acidosis which not only makes people feel sick, but keeps Diamox from working properly. There is a chance that he would do fine with Diamox if he could keep his CO2 up. Parasym Plus does not affect intracranial pressure. Hang in, my friend.


Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese