Forum Replies Created
-
AuthorPosts
-
diamondcutParticipant
I have found relief from nausea that i have suffered with for many years from mast cell treatment. Benadryl is helping at last! Another one of the hundreds that i did try was called Resolor and it speeds up motility mostly in the lower bowel, but can help upper GI problems too. It did help slightly. I am also looking at options next month for a gastric pace maker, but i am trying Dr Driscolls meds before i commit to anything that drastic, although drastic measures are needed!
diamondcutParticipantHi 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.December 5, 2012 at 8:47 pm in reply to: PVC's with every new drug! What does a POTs and EDS person do!! #3197diamondcutParticipantThank you Robert
Its nice to know someone else out there gets the same sort of problems. I have tried BB,CCB,Ivabradien, clonidine, all the usual suspects and not much good has come out of any of it. I think its like Dr Driscoll says treating the symptoms as apposed to the problem. I am going to try Diamox and have read up on Hydrocephalus, the more i think i have been possibly fobbed off with “just” pots related migraine. So i cant wait to see how i go, again i am just concerned as i seem to be reacting bably with drugs that this will happen, so long as it doesnt slow my heart down, thats the main thing that is messing me up.
I know what you mean about the video, i was the same with her books. You start off reading a bit and you just know what she is talking about and carry on until the end!But thanks for the advice, yes SSRI is what a lot of people on DI.NET talk about with more success than other durgs!
Have you tried the diamox test yet? -
AuthorPosts