I finally found it under your videos – not sure why the link didn’t work. Thank You for trying – any way. I do have another question. I have recently learned with genetic testing that I do have a sensitivity to sulfites and sulfur – do you know if any have reacted because of this problem? There are issues in the methylation pathways with mutations. I recently tried Lasix and it also is a sulfa base and didn’t feel well with it. And spironolactone was even worse. So, since there have been others helped with Diomox – that was the next thing I thought I wanted to try. I didn’t realize, until I saw your video, that it was also in this family. It seems that most diuretics are. How well does this work – when some of us with POTS seem to be dehydrated? My sodium levels seem to always be high which can be indicative of low blood volume. I’m not a salt loader either. Seems very odd and a paradox – to be low blood volume and also have bad edema. Doesn’t seem like that would even be possible. But, I guess with EDS veins – that may be the case.
Great questions, Issie,
I’m revising “The Driscoll Theory” just a bit, and when I can get that out, it should answer most of your questions. Diamox flies in the face of ‘conventional treatment’, which is just ONE reason researchers never dreamed we’d need it! All of my research STRONGLY indicates that most of us have some hydrocephalus, causing a release of inflammatory cytokines and besides causing hypoxia to the brain, it fans the fires of our crazy inflammation. In order to break the inflammatory cycle (and to immediately relieve that horrible base of the skull headache and neck ache that most of us have), Diamox works like a charm. Then, we move on to mast cell treatment to again bring the inflammatory cascade under control. I agree that we need more options (especially for those of us who absolutely can not tolerate sulpha drugs of any kind, we currently don’t have an alternative drug. Eeks. If you have symptoms of hydrocephalus, some (good) doctors will work with you to see if a sulpha reaction is indeed a problem for you, or if it is an “allergy” that you may have outgrown. Fortunately, most doctors report to me that the majority of patients can, indeed, do just fine on it, but PLEASE work carefully with your doctor, or an allergist (or a mast cell specialist) to see if you are able to tolerate it. We are not good “brain shunt” patients, as our hydrocephalus tends to be the “external communicating” variety, and shunts today only drain from the ventricles (excepting one from the cerebromedullary cistern, but it is a shunt with a VERY high complication rate, and patients don’t tend to do well with that shunt, either). We really need neurosurgeons to get on board with this problem, and improve our options. It’s a sloooooow process, to say the least. When hydrocephalus and mast cells are under control, however, we have a good chance of breaking this vicious cycle, and this returns our bodies to normal fluid dynamics (meaning we no longer have low blood volume). Basically, we are hitting the SOURCE of our POTS and dysautonomia, and NOT just treating the symptoms. When we treat this condition symptomatically, without addressing the CAUSE, well, you already know, we are kind of chasing our tails… Does that make more sense? Hon, you are certainly not alone in this conundrum. Big hug, Diana