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Well part one of the Driscoll theory, to lay more up right when sleeping and add a cervical collar has helped me with my “migraines”the difference is unbelievable!! I feel after the amount of Neurologist appointments and meds i have had this year that failed, these are for sure CFS drainage/pressure related headaches. My next step is to go for a trial with diamox and see if there is further improvement. I am strongly guessing there will be somehow!!
Its very interesting when i read people’s stories on here and how the pieces seem to fall into place for so many of us and how so many suffer with very similar symptoms.
I have POTs and EDS with GI I am also a type 1 diabetic, and no one has ever mentioned Well part one of the Driscoll theory, to lay more up right when sleeping and add a cervical collar has helped me with my “migraines”the difference is unbelievable!! I feel after the amount of Neurologist appointments and meds i have had this year that failed, these are for sure CFS drainage/pressure related headaches. My next step is to go for a trial with diamox and see if there is further improvement. I am strongly guessing there will be somehow!!
Its very interesting when i read people’s stories on here and how the pieces seem to fall into place for so many of us and how so many suffer with very similar symptoms.
I have POTs and EDS with GI tract involvement, I am also a type 1 diabetic, and no one has ever mentioned stynosis to me at all. Could anyone tell me as far as ccsvi and possible Vagues nerve damage, who would i be best to approach this with? My nuero? POTs specialist. As i think this is an avenue that has been opened up for investigation. to me at all. Could anyone tell me as far as ccsvi and possible Vagues nerve damage, who would i be best to approach this with new research that can relate to me? My nuero? POTs specialist? As i think this is an avenue that has been opened up for investigation.
Hi diamondcut, I must say that I have yet to hear of someone who did NOT do well with Diamox (assuming there are not contraindications) if they feel better with the soft cervical collar and raising the head of their bed… Let us know? As far as the vagus nerve compression, just raising the head of your bed will help. The blood drains through the IJV only when we are supine (laying down). When we are vertical, the pressure should basically be off of the vagus nerve (we drain through the vertebral veins in that position). My research is currently involving systemic treatment for our venous issues. I think we require systemic treatment, not localized — and as I mentioned in my book, damaging the delicate endothelium of our vessels is SCARY, long term. I think our vessels need tender, loving care! This is based on one of my clinical trials (not just personal experience). I look forward to publishing it soon. Let us know how you are doing? Gentle hugs, Diana
Hi Dr Driscoll!
Well i am almost a week on Diamox now and although it has made my mood a little erratic (I am usually pretty stable and its thrown my cycle way out) I am doing well. I usually do very badly on new drugs and was surprised how quickly my body excepted it! My headache or “migraine” pain lol was chronic and daily, usually a 8 or 9/10 by the early evening, now they register maybe a 4/10 and are not even daily! To think i am still adjusting to years of pressure suddenly being lifted, i can only see things getting better. I am on 66mg am, 125mg pm and evening. I feel very sorry for so many people out there with pots and eds that get miss diagnosed with migraine or in my case vertigo migraine as my nausea was 24/7 to! That is also reduced and i am eating better than in a long long time, although the baking soda is quite harsh on my tummy, i am going to try Chlorophyl later to see if any easier.
My next step after xmas is to find an interventional radiologist in the UK and get checked out for CCSVI or any other problems with veins, arteries and valves in the body. My one question i wonder if you can help me with is i have tachy in the 90-100’s resting and it doesn’t matter what form of medication i try, the second the meds are designed to do what they are suppose to and slowly bring my heart rate down, only into the late 80’s, i begin to get very faint and have painful pvc’s. Obviously the heart if beating compensatory to the blood pooling so if you interfere with this its even less oxygen to the brain, my thinking is could i have a type of blockage in my neck etc? Is that why its pointless to try and slow my heart rate? It is so frustrating though as it is stopping me take anti histamine as this stops the tachy!! So all i can take at the moment in Nasal crom!!!! One thing is for sure, i think there is a lot of truth in your research to do with the Vagus nerve. When my symptoms became life changing 5 years ago, my tummy stopped rumbling in a healthy way, the headaches, nausea, tachy all began snowball! I am meetng with a dr in the new year about an enterra stomach pacemaker, i dont know if that stimulates the vagus nerve in any way but i will be sure to ask him. When do you think you next publishing data will be out, i cant wait!!! Thank you Dr Driscoll for giving me a new found hope.
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