peregrine Posted December 21, 2012 Report Share Posted December 21, 2012 I'm quasi-hyper ("it's complicated") and taking clonidine, if that's helpful. Sleep has been an issue for me for a long time, which is why I take Seroquel (quetiapine fumarate) - it's technically an atypical antipsychotic, but at the tiny dose I take it at it is mostly a sedative (the other effects are helpful for my bipolar disorder, but with the tiny dose it isn't doing much on that axis). It doesn't make my sleep amazing (Lyrica did for a while, but sadly stopped), but it does keep me from waking up every hour and looking at the clock. Most folks who aren't in the psychiatric field don't think of it for sleep - I'm not sure why, it may generally not be a good idea - but that's why my sleep is mostly okay.(the main reason that pyridostigmine was helpful for me in the beginning was fatigue - but the effect of the clonidine in decreasing fatigue far, far outweighs the pyridostigmine for me.) Quote Link to comment Share on other sites More sharing options...
kitt Posted December 21, 2012 Author Report Share Posted December 21, 2012 . Quote Link to comment Share on other sites More sharing options...
Natops Posted December 21, 2012 Report Share Posted December 21, 2012 I take Mestinon. It helps my symptoms (POTS and SFN) about 30%. I had to take low dose at first because it was making me drowsy. Eventually I got use to it. Need to take it with food or I feel queasy. Quote Link to comment Share on other sites More sharing options...
joyagh Posted December 21, 2012 Report Share Posted December 21, 2012 I;m just starting acetlycholine (ACH) (natural Mestinon) supplements, along with DHEA and Seriphos. I'm convinced my hyper-Pots can be helped by balancing my adrenals. I sure hope it helps my weight. I have more hope for the DHEA and Seriphos, but the ACH might help too. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 22, 2012 Report Share Posted December 22, 2012 My autonomic neurologist at Mayo says mestinon is not a treatment for hyperPOTSIve got hyperpots and I take mestinon. Since most hypers have abnormal baroreflexes it can help if your a dizzy hyper. Quote Link to comment Share on other sites More sharing options...
peregrine Posted December 22, 2012 Report Share Posted December 22, 2012 Let's see, answers to kitt's questions...I take 12.5mg of Seroquel at night for sleep. I react very, very strongly to sedatives (and less strongly than normal to local anesthetics, go figure) - I took trazodone for a bit but 1/4 of the smallest pill made me sleep for 12 hours straight and be a zombie for the other 12. Seroquel works well for me, thankfully.Clonidine-wise, I take 0.1mg twice a day. It's been a great medication for me - I am generally less fatigued and more cognitively "with it" than in the past, and it's had a mild beneficial effect on my spaciness (the only drug that has thus far). Downsides have been sleepiness (not fatigue! hilarious how many different sensations of fatigue there are) - more like narcolepsy "sleep attacks" than anything else. Also some transient episodes of eye vibration sensation, fairly strong tremor, feeling cold, and confusion - neurologist says those probably aren't clonidine but are "more POTS stuff." I suspect the reason I'm less fatigued is that I'm running "high" less often - I no longer startle quite so badly to things like birds flying nearby or cars coming towards me, so I wonder if I'm wasting less energy during the day. I also sweat less (and overheat less!) - almost cold much of the time now that it's winter. I had some issues with hypotension/presyncope with postural change (BP down to 85/45 at times, with very very fast presyncope) - it's gotten better somewhat and I've learned to stand up slower. Currently pondering increasing the dose and/or switching to the patch.As to "quasi-hyper" - my ANS neurologist said that my tilt-table responses looked like someone who is hyper, but that I also obviously pool and have some probable small fiber neuropathy (via QSART). My blood pressure started getting high-ish when my POTS started (normally 110/70 but it started going up to 140/90 when symptoms started) - during the TTT it swung wildly (max 170/100 and minimum 62/50). But I've never had norepinephrine drawn at all (either standing or lying down), so I can't say that I'm a true hyperPOTS person. (I could also argue on the side that my very positive response to clonidine might support hyperPOTS as well, but I'm not clear on that) Quote Link to comment Share on other sites More sharing options...
kitt Posted December 22, 2012 Author Report Share Posted December 22, 2012 . Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted December 23, 2012 Report Share Posted December 23, 2012 Kitt, Dr Sandroni at Mayo is the autonomic neurologist who told me mestinon is not helpful in hyperPOTS. Sorry, I did not ask her why. Quote Link to comment Share on other sites More sharing options...
kitt Posted December 23, 2012 Author Report Share Posted December 23, 2012 . Quote Link to comment Share on other sites More sharing options...
peregrine Posted January 7, 2013 Report Share Posted January 7, 2013 Just discontinued pyridostigmine for a week with an eye towards going off of it entirely. End result? No change at all (maaaybe slightly more energy, actually, but I'm not certain that's not just fluctuations in what I'm doing on a daily basis). It seems to have given me a little energy boost before I started clonidine and methylphenidate (Ritalin), but compared to both - and especially to the clonidine - the effect is basically zero. Whoo for fewer meds. I am glad that it works well for some folks, though! Quote Link to comment Share on other sites More sharing options...
jenniferlynne76 Posted January 7, 2013 Report Share Posted January 7, 2013 Peregrine,Glad to hear you are able to discontinue it. That's actually one of the questions I have for my neurologist when I go back in a couple weeks. At what point can we begin to taper off and see how I do? Because I've been wondering: do I feel better because of the Mestinon or do I feel better just because my body is finally healing and adjusting (since I don't have an awful case to begin with). Hmmmm...For example, I notice no difference in how I feel whether I eat a lot of salt or not. Or whether or use the electrolyte drinks or not. I found I'm able to drink alcohol in small amounts and coffee with no problems either. So again: med or me? How do we know what's really making the difference here?I'm not having any side effects (that I'm aware of) from being on it, but I hate taking anything that isn't necessary. So my goal is ultimately to get back to the point where I'm on nothing but vitamins again. Some day! :-)-Jen Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted January 12, 2013 Report Share Posted January 12, 2013 I'm late to this topic, but just wanted to say that I have been on Mestinon for around three/four months and I still LOVE it! If I am late for my dose (90mg in morning, 60mg midday and 60mg evening) I notice it because I wind down like a clockwork doll (dizzy, tired, distended belly, urinary retention and constipation). Mestinon doesn't make me feel like a normal person by any stretch, but it makes my bowel and bladder function more normally, it helps with intestinal motility (reducing distention) and I have noticed less dizziness since I have been on it. I take Motilium with it because I do experience nausea, but overall the benefits for me outweigh the side effects. It is early days ...and I have been around long enough to feel cynical. Nothing seems to work forever, but while the ride is better I am staying on it! I hope it works for you like it has for me. SO happy with Mestinon, my new BFF. Quote Link to comment Share on other sites More sharing options...
Cmac3721 Posted January 13, 2013 Report Share Posted January 13, 2013 Jennifer what could of digestive issues were you experiening if you don't mind me asking? Quote Link to comment Share on other sites More sharing options...
jenniferlynne76 Posted January 13, 2013 Report Share Posted January 13, 2013 Cmac,I had horrible stomach pain when eating that would reach up under my ribs and into my shoulders. The process of digestion was excruciating. Other times, I would experience a dumping of sorts...like my body wasn't properly digesting food and I'd find myself on the toilet quickly. And it was clear the food in my "stool" was not digested, as there were pieces of whole food in it. Since I started the full dose of Mestinon I have had no trouble at all. I can eat comfortably and my digestion seems as normal as ever. That in itself has been the greatest gift the drug has given to me. If you have other questions please key me know. Hope this was helpful..-Jen Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted January 15, 2013 Report Share Posted January 15, 2013 Ive been taking mestinon 60mg once a day for 3 months. I have no bad side effects at all, it seems to make me less thirsty but other than that it doesnt help at all. Quote Link to comment Share on other sites More sharing options...
jenniferlynne76 Posted January 17, 2013 Report Share Posted January 17, 2013 I take 60mg three times a day and would think you'd definitely have to take it more than once a day to notice any effects from it, especially as its a very short acting drug. Quote Link to comment Share on other sites More sharing options...
kitt Posted January 18, 2013 Author Report Share Posted January 18, 2013 . Quote Link to comment Share on other sites More sharing options...
jvherenow Posted September 14, 2017 Report Share Posted September 14, 2017 I'm very late to this topic but I just found it. I've been on mestinon for 2 months now. I didn't feel much benefit at the starting 30 mg dose but now that I'm titrated to 90 mg three times a day, I feel tremendous benefit and no side effects. When it wears off, I can tell without looking at the clock that its time for the next dose. Biggest issues for me are shortness of breath, dizziness, visual issues, and brain fog. The visual issues are still ongoing and the dizziness comes and goes but is definitely less than without mestinon. The shortness of breath and brain fog are really improved. With mestinon I can work for most of the day. Without it, I was lucky to get in 2 hours before I was overwhelmed by symptoms. I don't have POTS but am being tested for small fiber polyneuropathy (SFN)... SFN sounds pretty accurate but the skin biopsy won't be back for a couple more weeks. My dysautonomia was diagnosed with a level 3 stress test (including cardiac catheterization)...the volume of blood coming back to the heart was way too low so I'm having pooling. Quote Link to comment Share on other sites More sharing options...
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