CCSVI Dr's in the UK and having fMRI help anyone?

[diamondcut]

I have learned a great deal from Dr Driscoll since being dx with POTs and EDS last year and am so grateful that someone is on our side as often i feel like there is no one fighting for us and to battle with Dr’s to get treatment is hard, especially when prettyill.com! i have hit brick walls with many conventional treatments that Specialists have prescribed to me as i am very sensitive to drugs, and many failed to show any improvement, and others some side effects have put me into hospital. So i am very frustrated at my lack of progress since my dx. In fact after having so many different drugs this year my migraines have now become the demon of my life and are whats making me almost house bound. The pain, nausea and weakness they create on my body has ruined what life i had i am sad to say, the only thing that has helped with the pain factor is Botox. The tachy and usual fatigue and problems from POTs are now secondary.

I did purchase one of Dr Driscolls book last year, and i am going to try diamox as i have the classic symptoms of high cranial pressure and i have nothing to loose.

Funny thing is I did actually show my Nuero the theory of CCSVI and EDS/POTS people and the higer intercranial pressure that i thought i could be suffering with as i have the classic angel wing pain in neck and back. But because in my nuero opinion it then progresses to red hot poker behind my eyes,and after ruling out chiari or CSF leaks, he told me it was it was chronic migraine. Then i was told what i now know is the typical quote from many Nuero’s “but this doesnt apply to you, you have low pressure”

So being slightly naive this time last year, he handed me my Dr Driscoll book back as i looked at the floor like a school kid who had failed in class lol!! And i sort of took his word for it. i have struggled to get on any migraine meds this year to help. I feel that my migraines have become worse after the many many drugs just disrupting my body even more. Would you go along with that idea too people?
So even though my quest is still out there to get my POTs under more control and find the route(s)cause, and believe me i am trying, i have seen geneticist’s, Immunologists, many Cardio’s, Nuero’s and still not much progress!! Im hoping i can tolerate Diamox this is my main concern as my heart casn start jumping all over the place with so many drugs. My next problem is how the heck do you find a Dr in the UK to check for CCSVI? I have an excellent cardio and nuero at the moment who are open minded with things so i have this in my corner, but for example in the UK there is only one place where you can get small fiber nueropathy checked with a biopsy, and I am still fighting for that. Does anyone know of Dr’s in the UK open to CCSVI scans?

Many thanks

[Dr. Diana]

I have learned a great deal from Dr Driscoll since being dx with POTs and EDS last year and am so grateful that someone is on our side as often i feel like there is no one fighting for us and to battle with Dr’s to get treatment is hard… In fact after having so many different drugs this year my migraines have now become the demon of my life and are whats making me almost house bound.
I did purchase one of Dr Driscolls book last year, and i am going to try diamox as i have the classic symptoms of high cranial pressure and i have nothing to loose.

Funny thing is I did actually show my Nuero the theory of CCSVI and EDS/POTS people and the higer intercranial pressure that i thought i could be suffering with as i have the classic angel wing pain in neck and back. But because in my nuero opinion it then progresses to red hot poker behind my eyes,and after ruling out chiari or CSF leaks, he told me it was it was chronic migraine. Then i was told what i now know is the typical quote from many Nuero’s “but this doesnt apply to you, you have low pressure” …
My next problem is how the heck do you find a Dr in the UK to check for CCSVI? I have an excellent cardio and nuero at the moment who are open minded with things so i have this in my corner, but for example in the UK there is only one place where you can get small fiber nueropathy checked with a biopsy, and I am still fighting for that. Does anyone know of Dr’s in the UK open to CCSVI scans?

Many thanks

Hi diamondcut, Yes, the use of Diamox flies in the face of “conventional wisdom”, so it can be hard to explain to some docs. One thing that you can mention is that Topamax (a migraine medication) has as its main ingredient — you guessed it — DIAMOX!! If you are having migraines, and you want to know if it is pressure related, prescribing one of the ingredients in Topamax just sounds smart in my book! As one of the researchers I talk to said, “If the patient has symptoms of high pressure, you treat it with Diamox. Why would we need to do a study on THAT?” 😉 Smart words. I also remember EIGHT YEARS ago, when Dr. Naz McDonald (heads up the NIH EDS study) told me that it looked like our brains were SINKING. I believe that is external communicating hydrocephalus (as you know), actually pushing our brains down on some of our cranial nerves (we have laxity intracranially, too, I believe) MIMICKING low pressure! Having said that, we may also be more prone to spontaneous spinal CSF leaks (Stanford research). It is important to know if you have high pressure MIMICKING low pressure, or if you have a CSF leak. If you take Diamox, and your pressure goes too low, you’ll get a HORRIBLE headache if you get vertical. You’d need to drink fluids and stay horizontal for a few hours (Diamox wears off in a few hours). That’s a cheap and easy differential test. If you have no sulpha allergies, I wonder what downside your doctor would see to a Diamox trial — say, just two days worth? Now, CCSVI — please see the latest video. Yes, I believe that is part of our problem, but I strongly believe that these vascular abnormalities are systemic, and should be treated as such (rather than angioplasty). I’m working on that as we speak! I hope to have a ‘guide’ for folks, explaining Diamox and its role soon. So much work, so little time! Hang in, Diamondcut! You may want to check the “good doctors” list on this forum and see if anyone has added a doctor near you. Understand that you are not alone in navigating the waters of some doctors who just don’t quite “get it” yet. It may take some time, but it will be clear SOMEDAY, I have no doubt. Big hug…

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