NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Does this sound like/look like Intracranial Hypertension? MRI images included. › Reply To: Does this sound like/look like Intracranial Hypertension? MRI images included.
I saw on an inspire board that Dr. Francomano recommended Dr. Virginia Kimonis at the University of California at Irvine Genetics Center. I’m about 80 miles away inland. I’m sure it will take me several months to get in.
I was doing some research and someone on the IIH forum mentioned Gliacin as a a natural alternative to Diamox. (I have problems with rx meds, and already have kidney stones, so I wasn’t keen on the idea of Diamox and was looking for an alternative). Gliacin has Boswellia Serrata extract (Frankincense) and my headache I’ve had the last week is so much improved- and after 30 minutes! Relaxed shoulder muscles, more range of motion. I’m not sure how long it will last, but just to have a break is great.
I saw a doc in San Diego for mast cell, he sent me to the cardiologist who recommended salt/fluids and compression wear, but I felt worse in my head and ill and saw a weird blue light in my peripheral vision. I had a hunch it was related to the compression wear and head pressure, but thought maybe I was overcompensating for the low pressure and it went too high in my head. I’m thinking now it probably was already high in my head (not low like my normal blood pressure) and that sent it over the edge. I’m taking zyrtec, but I have gut problems and a host of things beyond this and didn’t want to do H2- I only do them when I need to. The neuro who worked in conjunction with the allergist and cardio said I had “migraine.” I went back and looked at notes I typed up and asked questions from and gave her a copy and I specifically mentioned high intracranial pressure and chiari. So, maybe I do have migraine, but I think I have something else going on too. I need another opinion.
I hope you can find someone local before 2016! I just did a lot of googling for my area and joining lots of groups to find out the info I did. In fact, found the geneticist who diagnosed my daughter on here. Sadly, she wasn’t connected with anyone who did treatment or management of any type. But it got the ball rolling and gave me some validation and answers. And that meant a lot…