ramakentesh Posted January 11, 2012 Report Share Posted January 11, 2012 Trially mestonin day one at 30mgs this morning and at lunch.Im not feeling anything other than feeling out of it and very cold. Does it take a while before people notice a benefit? Thanks. Stomach feels fine thus far. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 11, 2012 Author Report Share Posted January 11, 2012 Honestly thus far it feels like ive had a few drinks or something LOL. plus raynauds time ten LOL Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 11, 2012 Author Report Share Posted January 11, 2012 An hour after my lunchtime dose and I can feel subtle but definately improvement posturally. maybe 30% improvement with cold feet and hands.But the most pronounced effect Ive noticed is a strange mood. To be honest I feel high. Im all giggly and stupid. Im watching in the night garden and loving it like a kid LOL. maybe me doc thinks im crazy and has given me some mood enhancer or something?? Quote Link to comment Share on other sites More sharing options...
Annaliese Posted January 11, 2012 Report Share Posted January 11, 2012 Are you sure is was mestinon you took ; ). Tried mestinon. Gave me massive diarrhea so i stopped it. Also gave me weird tingling on my legs. Scared me. I only lasted two days on it. My dys friend swears by it though and says you have to take it for a few weeks before things calm down. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 11, 2012 Report Share Posted January 11, 2012 Yeah I have never heard of that symptom before.. try looking on askapatient.com... I too got pretty bad stomach issues and had to stop. Make sure they gave you the right med lol Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 11, 2012 Author Report Share Posted January 11, 2012 Yeah its definately mestonin/Pyridostigmine bromide according to the bottle which was sealed. I have both the short-acting and LAR varieties.Strange med as far as I can see so far. I think for me it stopped working quite quickly as in within two hours both times.I had no adverse effects whatsoever other than cold feet and hands which were not terrible. Id say I had a 20-30% improvement on the second dose for postural symptoms although brain fog was still present. No stomach issues whatsoever. Infact I felt hungry after taking my lunch time dosage despite having just eaten.But I definately had what can only be described as mild euphoria from it. I felt not only relaxed but kind of energised and overly interested in random things. My wife though that might just be because I was feeling better but im sure it was part of the action of the med for me. it wasnt strong to the point where I felt strange, more just giggly.The med is not supposed to be able to cross the blood-brain barrier and Ive never had any psychological issues of any kind.I think florinef probably works better for me. I have no idea and received no advice from my specialist about whether it is ok to take both or whether I was supposed to stop florinegf when I trialled mestonin (which I did).I also noticed that it wares off with a crash. I feel quite similar to after you've had too much caffeine, headachy and unenergised now.I guess it was a positive response. it certainly worked better for me than the alpha agonist meds. Quote Link to comment Share on other sites More sharing options...
jenglynn Posted January 11, 2012 Report Share Posted January 11, 2012 I took this drug while inpatient at Mayo and I personally responded very poorly. It raised my blood pressure WAY too high- I had a 190/130 with a HR of 39 or something like that. Then when the nurse went ahead with the orthostatics- sitting dropped 40 points with an increase in HR and standing another 50 points with a HR of 180. It also caused a horrible headache (which of course could have been the BP when my body is used to 80/60 or 90/70 BP ) and some other strange side effects, none unfortunately were eurphoria or anything of the sort. In fact, I was not very nice at all and extremely crabby and it also caused horrible adrenal surges (or that could have been a coincidence). I was curled up in the hospital bed for 30 min. waiting for the doctor to come talk to me, sobbing hysterically because the nurse was trying to tell me what progress this was because I didn't faint while standing. But I was shaking uncontrollably, teeth chattering and in a cold, clammy sweat.I also take Florinef and Midodrine so it could be that I am just on too many drugs to raise my BP and the doctor strongly advised me to think about stopping one of the others and staying with the Mestonin because it obviously worked at raising my BP but emotionally, I just could never bring myself to take that drug again after that horrrible reaction. In theory, I see his point and he MAY be right, but I don't know that I could ever put that in my system again. ALL of that said, I have heard of many people that it has worked out great for and I truly pray you are one of those!!! Sometimes, each of us has our own wonder drug that will really help our symptoms... (although not nearly enough of us, right??? ) Maybe this is yours! I sure hope so! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 11, 2012 Author Report Share Posted January 11, 2012 I was expecting that kind of result primarily because most of the people with similar symptoms and presentations to me mine seem to do poorly on mestonin and secondly because I got that from DHE and another med that act the same as midodrine - jittery and chattering like i was going into hypothermia, curled up in bed riding it out like you say.But instead I was bouncing off the walls and might end up in a psyche ward LOL... I still feel better now than I did before I took both doses. Im on two doses morning and lunch. I feel very cold but i feel better than I did before I took it. I didnt check my heart rate or blood pressure on the med. Maybe I should have...My presentation has been called hyper by some. NE levels were low normal, but postural hypertension and my MSNA response to standing was the highest recorded at the time or something. Yet Im dizzy and when my BP gets lower than 140 standing I feel TERRIBLE. My doc said I wasnt hyperadrenergic. Quote Link to comment Share on other sites More sharing options...
issie Posted January 11, 2012 Report Share Posted January 11, 2012 Maybe look the pills up on line and make sure they put the right pills into the bottle. I had the horrible - anger and agitation with this, like everyone else that's responded. Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 11, 2012 Report Share Posted January 11, 2012 Rama- Very curious to hear how this one goes for you over time. I keep wondering about trying it to see if it would help with the weakness I keep having.Are you still doing the autoimmune diet? Maybe you were hungry again because you didn't have enough protein. LOLPlease keep us posted on both of these trials you are doing. Personally I didn't like Florinef at all. Gave me tons of side effects. I could stand a little euphoria these days however. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted January 11, 2012 Report Share Posted January 11, 2012 Thanks for posting this info. I have a prescription but still haven't tried mestinon. I still have intermittent but significant nausea and D and worry about making it worse. Also I am so cold in the winter, I can't imagine being colder...wouldn't mind feeling stoned though (kidding). Please keep on updating. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 11, 2012 Author Report Share Posted January 11, 2012 Just about to embark on day two. Ill let you know how things go. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 12, 2012 Author Report Share Posted January 12, 2012 Well it seems to take an hour and 15 to kick in and then wears off an hour later abruptly. Slight euphoria coming on again now but not like yesterday. Im definately feeling some nausea this time though - subtle but present. No postural improvements yet but more relaxed posturally.At 1.30 hours I can now notice its improvement posturally. But it takes a full 1 1/2 hours to kick in and in that time I feel kinda tired before hand.For me I noticed that about two hours after it wore off yesterday I felt quite energised for the rest of the day.The euphoria is still there a bit, a slight ichy feeling and cold feet and hands. My postural blood pressure is down as is my HR. heart rate down to 72 bpm and postural BP 140/92.its almost like this med makes you feel so strange that you forget you have POTS. Sounds crazy I know but that is how it feels... Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 12, 2012 Author Report Share Posted January 12, 2012 Well I gave it a try at the local store and I think I lasted maybe 2 more minutes before becoming uncomfortable, then I crashed and I think the mestonin made this feel worse than usual.I came home and drank a lot of liquids to try and make me feel better but I feel pretty ordinary now.So thus far, the improvement is pretty small for me really. The euphoria did not last once the crash came on LOL.At least florinef was making me feel human... Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted January 12, 2012 Report Share Posted January 12, 2012 rama, please keep us updated, this is very useful info, thank you for sharing! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 12, 2012 Author Report Share Posted January 12, 2012 No problem - ive kind of turned this thread into a diary of sorts LOL.I think chinese herbs that I took back in 2009 gave me a larger noticable increase in standing time but I wasnt as bad as I am now then. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 12, 2012 Report Share Posted January 12, 2012 Could the euphoric feeling be adrenaline? You mentined cold hands and feet and I always get those when my adrenaline kicks in. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 12, 2012 Author Report Share Posted January 12, 2012 Im used to adrenaline causing jitteriness and anxiety whereas I felt relaxed and chilled out.For me it works in terms of getting rid of the jittery type feelings but its benefit posturally for dizziness is pretty minor. Quote Link to comment Share on other sites More sharing options...
issie Posted January 12, 2012 Report Share Posted January 12, 2012 Aw, was hoping for a better report. Hang in there! Maybe tomorrow will be better. Might just not be the right one for you. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 13, 2012 Author Report Share Posted January 13, 2012 Day three:called my GP and he suggested upping the dosage and then recording the effects.Ive taken 60mgs this morning and then again at lunch.I noticed it kick in a lot quicker at this dosage - I felt something within twenty minutes (although i was told it takes an hour to kick in). the main and overall feeling I get today is total relaxation to the point where I feel I could easily go to sleep right now. Posturally there has been an improvement again of around 30-40%. Dizziness still present,. Cognition improved but overall its like its just totally shut down the hyper feelings without making my dizziness worse.Whether I could work feeling this sedated is my main concern. But I was out in the garden this morning and examining my tomatoes with much more interest than usual. I wonder over time whether having POTs always makes you very regimented in doing things because you have limited energy. Whereas today I just strolled out and enjoyed the garden. Quote Link to comment Share on other sites More sharing options...
issie Posted January 13, 2012 Report Share Posted January 13, 2012 So happy for you Rama! Let's hope it keeps going in a positive direction.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 13, 2012 Author Report Share Posted January 13, 2012 Also my appetite is back with a vengence. Im cooking up a nice parsnip risotto right now. ZThere is no way I could have done that yesterday! Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted January 13, 2012 Report Share Posted January 13, 2012 You are making this sound like a fun drug to try! Thanks for posting, I hope you keep feeling good! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 13, 2012 Author Report Share Posted January 13, 2012 I dont know what it does for POTs but it sure relaxs you! Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 13, 2012 Report Share Posted January 13, 2012 RamaSo glad you are having a positive trial run I was prescribed Mestinon awhile ago but have been too afraid to give it a go as I lean more towards the hyper side of POTS high adrenaline and BP......would you say you are more of hyper type?Bren Quote Link to comment Share on other sites More sharing options...
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