ramakentesh Posted April 19, 2011 Report Share Posted April 19, 2011 My knowledge about this is pretty sketchy at the moment. I correspond with a CFS patient with POTS who has been seeing a CFS doctor in the states that is connected to a Dr Goldstein.This doctor has been prescribing a mixture of three medications for patients with CFS who have either NMH or POTS with interesting results. Mestonin for energy Nifedipine for mental clarityNitroglycerine for breathlessnessthis treatment appears to work well for both POTS in CFS and NMH in CFS so it appears that the obvious biproducts of hypotension from Nitro and calcium channel blockers dont apply to POTS or NMH and infact these medications help. This is contrary to the prevailing opinions of POTS and its mechanisms and which medications hurt v help. Mestonin obviously increases acetylcholine activity.Nifedipine is a calcium channel blocker that reduces cerebral vasoconstriction and cerebral artery resistance. How it helps is very interesting. Nitro - well this suggests inappropriate vasoconstriction rather than vasodilation is the problem?? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 19, 2011 Author Report Share Posted April 19, 2011 The doctor in question stated that nearly half the patients seen are able to function well once on this regime. Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted April 19, 2011 Report Share Posted April 19, 2011 I use supplements for everything, but at least if some doctors do not have that knowledge, the patient can get help. Just more side effect problems with most presciptions though. Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted April 19, 2011 Report Share Posted April 19, 2011 Would like to know more about this.... Keep us posted please ;o) Quote Link to comment Share on other sites More sharing options...
Birdlady Posted April 19, 2011 Report Share Posted April 19, 2011 I was given 0.2mg nitro sublingual during my 1st TTT and my heart rate went through the roof (178) and I was terrified. I felt like I was going to die on the table and will never ever let anyone give me that medicine ever again. Just shows we are all different. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted April 19, 2011 Report Share Posted April 19, 2011 A little nitro makes me feel SO much better. It's a balancing act because too much makes things worse, of course. And the mestinon always makes my BP really high and increases chest pain. I'd imagine that with the nitro and nifedipine, those side effects would be gone. I'm so glad someone is willing to think out-of-the-box, anyway! Quote Link to comment Share on other sites More sharing options...
juliegee Posted April 19, 2011 Report Share Posted April 19, 2011 I used nifedipine for a short time- for severe reynaud's, not POTS/CFS. (BTW, per Dr. Stewart's descriptions, I'm a classic low flow type.) I couldn't tolerate even the lowest dose. My BP totally bottomed out- immeasurable, then up to 59/40 I had to lie down until it wore off- I'll never take it again.Might help some... Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 20, 2011 Report Share Posted April 20, 2011 Sounds like you'd need to take all three together to get the total effect? Any one in isolation might just aggravate things...as many of you have suggested. Interesting info. Thanks for sharing. I'll be curious to hear if you learn any more about this combo. Quote Link to comment Share on other sites More sharing options...
issie Posted April 20, 2011 Report Share Posted April 20, 2011 Rama,Are you going to try this? I've tried the mestinon - it wasn't at all good for me - it made me very angry and nervous. I know the nitro really helped me and brought my bp down when it was up - but wouldn't want to have to deal with the terrible headaches that came with that treatment. Don't know about the other RX - haven't tried that. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 20, 2011 Author Report Share Posted April 20, 2011 I used nifedipine for a short time- for severe reynaud's, not POTS/CFS. (BTW, per Dr. Stewart's descriptions, I'm a classic low flow type.) I couldn't tolerate even the lowest dose. My BP totally bottomed out- immeasurable, then up to 59/40 I had to lie down until it wore off- I'll never take it again.Might help some...Interesting. have you been diagnosed with elevated angiotensin II levels? the tests isnt that difficult an assay. Do you have postural hypertension? I thinbk nearly all adult low flow POTs patients do. Quote Link to comment Share on other sites More sharing options...
juliegee Posted April 21, 2011 Report Share Posted April 21, 2011 Rama-I will ask about being checked for high Angiotensin II levels. Interestingly, I have read that inhibitors, like Lorsartan will treat (or at least positively impact) all of my conditions- low flow POTS, Reynauds, and MCAD. Might be something there...I guess I am hyperandrogenic. Today, supine I was 89/55, standing 110/70. I have gotten some crazy high readings when I was nervous in a doctor's office, like 150/110 Are you low flow? Do you have high Angiotensin II levels? Julie Quote Link to comment Share on other sites More sharing options...
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