It’s funny how we figure things out and usually from trial and error. One thing I figured out the hard way is my need for more NO (nitric oxide). A very expensive ER visit with what seemed to be a heart attack, turned out to be a probable Kounis Syndrome – where mast cells degranulate and attack the heart. What’s the treatment —nitroglycerin, massive antihistamines and IV’s. A night in the hospital and a really expensive bill – taught me not to have glutamate’s. Yes, I chewed a whole lot of sugar free gum and had a reaction to the aspartame in it. That is a glutamate.
I appreciate your explanation of the drainage systems with us. I have for years told my husband that it feels like there is too much pressure in my head and it needs to be squeezed to drain.
Since I live in Phoenix, AZ and my docs are the wonderful team at Mayo. I’m really trying to get them on board with your ideas and hopefully my neuro POTS doc will let me try this. I have not been successful with any of the traditional POTS meds I’ve tried so far. I’m awaiting a call back from him on my proposal for a trial with Diamox. I hope that the sulfur thing won’t be a problem. I really enjoy research and am on the search for answers for all of us. I think, if we all put our heads together, we will come up with some answers. My PCP doc (is not at Mayo) didn’t feel comfortable in RXing the diamox – since she had only used it for altitude issues with people. So, now the ball is in the court of my neuro. Hoping he will at least let me give it a try. I think, if I have success with it – there will be others that would benefit from me being the guinea pig.
Hi Issie, This is some great information — thank you for sharing it! so many of us end up in the emergency room with chest pain and are sent home. Were the doc at Mayo able to figure it out for you? I haven’t had much luck with the docs at Mayo, but if your PCP prescribes Diamox for altitude sickness, you wouldn’t need more than a couple of days worth to see if it helped. We are WAY past the guinea pig stage, Hon! As one doctor told me, it doesn’t even “deserve” a study. If patients have symptoms of hydrocephalus, prescribe Diamox. So. there you go! 🙂 Keep us posted? 🙂 Diana