iheartcats Posted June 5, 2009 Report Share Posted June 5, 2009 Hello, all...I've been on my Mestinon twice a day (60mg) for about two months now. I will start the 180mg 'timed release' version next week because it's a slight increase in dosage and easier to take. I'll admit I've forgotten to take a Mestinon here and there and not noticed. If I miss my Midodrine I notice, and my BB I really notice if I miss. Same with my Zyrtec and Ranitidine (helps hives!).So. I've decided I'll give the 180mg timed released Mestinon a go...but how can I tell if it's really helping? I don't like taking a medicine that really doesn't work for me. I'm not noticing anything negative, but nothing totally positive yet either.Thanks! Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted June 5, 2009 Report Share Posted June 5, 2009 Hi,I would check with your doctor to see if he thought you should have seen some benefit by now. I would think that you should have seen and felt a benefit after several months. I always vote for stopping unnecessary meds, but be sure to talk with your doctor regarding how to stop the med - if you need to taper it or can stop suddenly. Good luck, but sorry to hear it hasn't helped.~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 5, 2009 Report Share Posted June 5, 2009 (edited) Mestinon would only help if you have the partial peripheral neuropathy. Edited July 7, 2009 by flop Quote Link to comment Share on other sites More sharing options...
maggie Posted June 6, 2009 Report Share Posted June 6, 2009 ramakenteshHow do you know that mestinon is only good for partial peripheral neuropathy? What is partial peripheral neuropathy? Where did you get your iformation on mestinon? I would be interested to know because my doctor wanted me to try this med but after I researched it I didn't like the side effects that I read about. Thanks.maggie Quote Link to comment Share on other sites More sharing options...
bjt22 Posted June 6, 2009 Report Share Posted June 6, 2009 It's difficult to say how long it took me to decide if Mestinon was "beneficial"....I say this because it took me awhile to juggle it around in a way that avoided side effects. Overall, I think after a couple of weeks, I noticed that when under orthostatic "stress", I noticed less trembling, shakiness, and muscle weakness. I'm not less orthostatic in that I feel less light headedness or other symptoms of being up, but the lessening of the weakness is a big deal for me. I also noticed, RIGHT AWAY, that it helped my digestive tract move along a little more regularly. This, too, is a big deal for me....having bowel function working well enough to produce, um, a couple of movements a week instead of one every ten days is a definite improvement.So, for me, it is not a miracle, cure-all, drug....it's just one more medication that I can use to get a little relief from a few symptoms. Quote Link to comment Share on other sites More sharing options...
iheartcats Posted June 7, 2009 Author Report Share Posted June 7, 2009 My doctor said to try the 180mg timed release version for a month (especially since I already have bought the bottle of it!) and it I see no clear help, go of it for a while.If I notice a difference (or feel the need to try it later), he said I always can.But it is hard to notice an improvement on some drugs and I guess if one doesn't, why stay on it? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 7, 2009 Report Share Posted June 7, 2009 (edited) Sorry the terms peripheral neuropathy can be confusing. Mestinon increases the levels of the nerve messenger Acetylcholine by inhibiting cholinesterase (in other words preventing its breakdown). Its helpful in myasthenia gravis where autoantibodies effect synaptic sensitivity to acetylicholine. By increasing its levels you increase nerve traffic and conduction and improve the condition.In POTS a subset of patients appear to have autoanitbodies that are damaging certain nerve or receptors in the lower body. This either damages the nerves that release norepinephrine or those that recept it and vasoconstrict on standing, thus the symptoms of POTS occur (the sympathetic nervous system goes into overdrive to maintain blood flow to the heart and brain) This has been called a variety of things - a longtract peripheral neuropathy, or the Partial Dysautonomia by Dr Grubb or High Flow POTS by Dr Stewart.By increasing acetylcholine you are able to make the nerves that are still present work better basically by increasing conduction. This increases vasoconstriction and improves the symptoms. Its unclear whether the faulty vasoconstriction relates to arterial vasoconstriction as most studies suggest, or venoconstriction as some work by Dr Grubb suggests. In other forms of POTS, where it is theorised that there is TOO much nerve activity and thus inappropriate vasoconstriction, hypersensativity in certain receptors, mestinon may not help and could potentially make a person worse. I thought it was interesting that many of the visual symptoms reported in POTS are also reported in a syndrome that relates to acetylacolinerase such as poor depth perception, tachycardia and visual snow but after 20 minutes of searching I cant find the study again!! sorry. Edited July 7, 2009 by flop Quote Link to comment Share on other sites More sharing options...
iheartcats Posted June 8, 2009 Author Report Share Posted June 8, 2009 I wish I knew what type of POTS I have. I'm sticking with the Mestinon for now because my current mix (Mesitnon, Midodrine, Inderal) is making me feel 40-60% better on average. I don't want to lose that...I know people are afraid to try new meds (I am one of them) but now that I've found a mix that helps I'm glad I gave in and tried. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted June 8, 2009 Report Share Posted June 8, 2009 i take it 60 mg 60 mg 30 mglast night i took 60 mg as my heart was out of control.171 i had tried to rake soil and throw seeds in garden.it was nothing. i came in and got it down to 143 resting.my face was so red i thought i was going to be foundon the floor with a head injury. bellamia~ blessings & xxxx's to all Quote Link to comment Share on other sites More sharing options...
iheartcats Posted June 9, 2009 Author Report Share Posted June 9, 2009 Hmmm. I just posted about some bad side effects on my new increased dosage!I'm waiting on my doctor to call, but how weird is it that such a small increase in a medicine can send you over the top. Quote Link to comment Share on other sites More sharing options...
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