Sidny
Senior Member
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- 176
Latest episode with Dr. David Systrom.
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Yes, it didn't help as much by itself as it did when combined with the beta blockers, naldolol or propranolol.Is there anyone on here who have found mestinon to be helpful?
Its also possible that how we need to be treated is different from how its used in other conditions. That is why proper clinical trials are needed, we do not know what it is doing. Its also possible it created complications, this drug has been implicated in Gulf War Illness, and not in a good way. However, again, we still lack facts.I tried Pyridostigmine as advised by Dr. Jacob Tietelbaum in his book on CFS. It felt horrible ! Maybe I dont come in that subcategory of patients.
@Learner1 Could you tell me how much those meds helped you when combined and how specifically they helped you? I am so torn about trying mestinon as getting sicker is always a big fear. Did they help primarily with OI, and did it get you back on your feet more?Yes, it didn't help as much by itself as it did when combined with the beta blockers, naldolol or propranolol
I don't either as I am already in hyper-parasympathetic mode! But most are the opposite.Maybe I dont come in that subcategory of patients.
Thank you! My heart rate is normal at rest and goes to 120 - 150 after 5 mins standing or walking. My BP is normal to low, but not sure what it does when my HR increases.For me, they work best together, taken 10mg each, 3x a day. The pharmacy kept flagging the interaction as they can slow the heart, but that was desired in my case and tge dysautonomia specialist says he has lots of patients on this combo.
Let me qualify that: I was definitely in that condition when comprehensively tested in 2006. Do you think it could change? I recently re-tried a drug that worked excellently for me at that time--it increased nor-epinephrine in the synapses. But it no longer had the same effect.I am already in hyper-parasympathetic mode!
Its also possible that how we need to be treated is different from how its used in other conditions. That is why proper clinical trials are needed, we do not know what it is doing. Its also possible it created complications, this drug has been implicated in Gulf War Illness, and not in a good way. However, again, we still lack facts.
I do not know. Possibly. This is not rare, I think. This highlights the need for ME specific clinical trials, because there is too much we do not know about this, or most drugs, in ME.Could this drug make you feel bad for a period of time while the body adjusts?