January 4, 2016 at 7:12 pm #935ThefloorismyfriendParticipant
I was diagnosed with EDS about a half a year ago after a long long life filled with what I thought were “normal” experiences. Currently my biggest complaints (aside from the chronic pain) are POTS/Dysautonomia, and a slew of headache/head problems.
I’ve mostly tried to treat what I’ve got by adjusting my diet. It seems that I do a lot better with a mostly vegan and predominantly alkalizing diet. A while back I read the Driscoll Theory and thought the information was very interesting. I wasn’t really sure where to begin though, since the information is so specific. After I read it I tried taking Zantac/Zyrtec and the month that I did it helped immensely. I had planned to take some more steps in that direction but I really didn’t know who to talk to and basically just got back into my regular schedule of struggling with my issues and trying to live as best I can. I’ve managed to get a handle on my biggest pain complaint (rib pain) and I want to try to make POTS/Dysautonomia my next big target.
Today I noticed (as usual) that I have a TON of floaters in my eyes (started when I was in college), and that I can see my heartbeat in my eyes, feel it in the back of my neck, as well as occasionally hearing a “whooshing” sound accompanied by uncomfortable throbbing pain in my skull. On top of this I have really awful sub-occipital pain and a very heavy head nearly every day. Rarely I’ll also have loss of hearing for 30-60 seconds accompanied by a loud ringing sound. On top of this certain foods send me into absolute tailspins for weeks. A cup of mocha can turn me into an absolute mess for two weeks, and often foods that I’ve had with no issues for a long time suddenly give me problems. Random muscles lock into absolute spasms and crush everything around them.
I re-read the Driscoll Theory and I’m thinking it is time for me to seriously consider that I have high intercranial pressure. My doctors are very open minded and seem willing to go with whatever direction I steer them (thank god) due to my EDS diagnosis. The problem is that I don’t know what kind of MRI to order to take a look at my neck veins to see if I have any abnormal veinous pooling or other abnormalities. Should I try to get a vertical one? I usually feel a lot better on the floor.
I’m also interesting in giving Zantac/Zyrtec a try but I’m not sure what kind of dose to use for each of them. I’m 6’4 and 220 pounds, does anyone have any pointers?
I’ve also been interested in Diamox since to me my ph levels seem to be highly linked to my health problems. Is it likely based on the symptoms above that Diamox would help me? If so can anyone recommend a dosage to suggest to my doctor?
Also, would it be a good idea for me to wait until after my MRI to start on another round of Zantac/Zyrtec just in case these things do make a big difference for me? Then I can start after? I’m sort of lost here. I feel like the concepts in the Driscoll Theory have big potential for me but I have no idea where to start.January 6, 2016 at 1:56 pm #5780Dr. DianaKeymaster
Hi! I’m so sorry you are on this journey, but I hope you find answers here, in the videos and book. We are not all the same, and there is no set protocol (or even doses) of medication suitable for us all. Having said that, Zantac Zyrtec (double doses) usually help most of us. If high intracranial pressure is a problem, your doctor will want a “regular” brain MRI (no need to look at veins), lying down is fine. Doses of Diamox are tricky. This video discusses them: https://youtu.be/xd1QoOhJTxw If all else fails, we see patients full time at POTSCare.com now. Gentle hugs,
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