5 Weeks On Mestinon - Pyridostigmine Bromide

[ramakentesh]

Well I have now been on this medication for around 5 weeks and I thought I would let people know how I was doing.

All in all, I like this medication. It had worked better for me than any other pharm I have taken for my POTS other than perhaps Inderal. Sometimes in fact it works fantastically.

The improvements I have seen on the medication in terms of how profound they have been:

1. Dramatic improvement in postural vision - I can see clearly all the time and amazingly so

2. Reduction in presyncope symptoms by about 30-50% - this works better if taken immediately before a presyncopal event coming on

3. Reduction in feelings of jitteriness, sympathetic feelings and I guess you'd say POTS related anxiety.

4. Improvement in exercise tolerance - infact I feel best on this medication moving around and I feel the constant need to. If I get post exercise malaise I take a second dose and it cuts it by about 40-50%.

5. A large improvement in sleep quality if taken before bed.

6. A general improvement in how I look health wise.

if you look at my BP and HR on Mestinon they are now completely normal.

As we know, all medications arent without side effects and in my case these have been in order of severity - although many of these have reduced as time has gone on:

1. Fatigue and sleepiness - this can at times be a real down side. its like I swap dizziness for just fatigue - I cant work out whether its just breakthrough POTS feelings or a genuine side effect of the med.

2. A feeling at times of being 'slightly stoned' - much less on the lower dose. its not a fun stoned feeling, more just a bit confused.

3. Motivation - since starting mestinon I have less motivation - almost like Im not so wired now and have trouble trying to get as much done. I find myself easily distracted. id sooner look at geometric pattersn on my computer than do the cleaning I need to do today.

4. Arm weakness after exercise - its getting better with time but was kinda weird to start with when i was at a shop and couldnt lift a small bag.

5. for the first week I woke up anxious on Mestinon - this has now completely gone.

I have had zero stomach issues, even on 60mgs three times a day. Mestinon also seems to ease the jitteriness and anxie feelings when i was taking midodrine and also from caffeine which I appear hypersensitive to (although I dont know if this is from Hyper presentation or 'denervation hypersensitivity'.

I have had trouble getting the right dose for me - at the moment I am finding just 1 X 60mgs a day the most helpful - when i went up to 120mgs and 180mgs I found it less helpful for me and on the larger dose I actually got lost somewhere and couldnt think straight. I think it was too much of an increase too quickly at the time.

The med works best for me when I keep moving. If I sit around it doesnt work as well. Initially I crashed a few times about 6 hours after taking it but not now.

The closest medications I have taken that are similar to mestinon is possibly the chinese herbs and Inderal. i assume the double boost to the parasympathetic system might explain this feeling, although it does also increase sympathetic activity through nicotinic receptors.

All in all I would describe Mestinon as a winner - but not in the ways i was told it would help - which were for fatigue and weakness which it does little for me - it does all the rest LOL.

My doctor and I agree that this medication has been helpful in my case but that perhaps its not the 'full way' there and a second therapy might be in order perhaps to combat the fatigue feelings.

My advice if trying this medication is to give it a good go - maybe 2 weeks or more before making an assessment of how you respond to it. It can also be very easy to overdo it on this medication if your not careful.

[kmichaelson]

That's great news that you're seeing so much improvement! Did you have arm weakness before or is that just a side effect you're having now? Thanks for reporting on what it helps with and where it isn't so great. I'm on midodrine right now and while it's helped some, it hasn't made as big a difference as I'd hoped, so it's good to have an idea what other options are and how people respond to them.

That's something I have a lot of, so I just wondered if it's a pretty normal POTS thing or if somehow your medication is overcompensating in some way...? Anyway, I'm very glad to hear it's more good news than bad!

[HopeSprings]

Good to hear you found something that really helps. Hope this will last! Honestly, the stoned feeling would be a major problem for me because I already struggle so much with this. I find the arm weakness strange because isn't this medicine used in MG to counteract muscle weakness? Does your recent line of thinking link to this medication - that the same antibodies found in MG are possibly implicated in POTS, which may be why Mestinon works in POTS? Or am I totally off - if not, why does this work for POTS? Not familiar with the background on it.

[Guest Alex]

Rama,

I'm glad to hear the news. Looks like mestinon is a winner in your case.

I've started on mestinon recently (2 1/2 weeks ago) and I've felt some amazing benefits for the first 2 weeks or so, but now I'm having second thoughts about it as most of the symptoms I used to have are back (chest pain, legs and arms ache, generalized body weakness, inability to exercise). Reading your post though gave me hope, so I'll stick to it (plus my dr wants me to continue to take it). I'm taking 30 mg upon waking up, 30 mg at noon and 15 mg 4 hrs later.

Reading about how you feel "slightly stoned" made me laugh as I can totally relate to that. The way you put it in words is 1000 times better than I could (I tried explaining to others how the medication makes me feel but was never able to find the right phrase, so now I guess I'll be sort of plagiarizing you).

As far as stomach issues, it's a blessing you have none. My case is slightly different, but I can manage a few cramps if they're for a good cause.

Thanks for posting about your experience, and I for one would appreciate if you would be willing to update this post. It's always nice to read some success story.

Alex

[ramakentesh]

yeah I cant explain the muscle weakness since it should do the exact opposite, yet consistently for the first week I had it constantly. I was worried i was over medicating but I checked into it and apparently in a cholinergic crisis the throat muscles get weak first so it wasnt that.

Yeah the stoned thing is weird. I can think clearer but just a very mild kind of stoned feeling. Ive been trying low dose caffeine to combat the sleepiness and it works sometimes but not other times. The sleepiness appears to only occur in the first 1 1/2 ive noticed as well, then its better.

Got my appetite back and then some too.

And Alex - I didnt notice a massive benefit until I got up to 60mgs and above. On 30mgs initially and i felt something but it was much better on the 60mgs.

[ramakentesh]

As for why mestinon helps, some theorise it helps because there are autoantibodies clogging up the acetylcholine a3 nicotinic receptors in our autonomic ganglia causing faulty sympathetic and parasympathetic activity. others think it helps simply because it increases baroreflex sensitivity which is impaired in some POTS, including low flow where autoimmunity is not implicated. Others think it might just stop parasympathetic withdrawal which is often the bodies response to low blood return to the heart and which can lead to changes in cerebral autoregulation.

I have no idea how or why it works for me but my doctor seemed to think my response indicated an autoimmune mediated process in my case. Honestly if it gave me energy as well it would be a wonder drug for me. But the fatigue issues are my only down side now.

yeah the stoned feeling seems to improve over time but there are days where I still feel it now like yesterday, but all in all not as much.

lastly, I found mestonin and midodrine worked quite well together in the periods where I could get midodrine to work for me (usually first dose made me feel much worse rather than better).

[issie]

Rama,

So VERY HAPPY that you are finding good benefits with what you are doing. It's been a long hard few months for you with lots of ups and downs. I'm so hoping that everything will continue in the right direction. I'm sure you will figure out what to do to increase your energy levels - it's just a matter of time. . .and more experiments. LOL! Goodness knows we go through so many of those. Some with great success - others with complete utter failure. Hoping for some wonderful, inspiring, happy days ahead for you!

Issie

[ramakentesh]

thanks for that. Yeah hoping its doing something good. Keeps me up and moving anyway. LOL

[houswoea]

Lol, I HATE the "slightly stoned" feeling, it drives me crrrrrazy.

[Guest Alex]

And Alex - I didnt notice a massive benefit until I got up to 60mgs and above. On 30mgs initially and i felt something but it was much better on the 60mgs.

Rama, when you say 60 mg, is it 60 mg in one dose, or 60 mg a day? As i'm taking 90 mg a day, actually 75 as I decided do decrease the morning amount to 30 from 45. 45 mg is too harsh on my stomach, and it makes me really drowsy.

Thanks.

Alex

[bellgirl]

I find it interesting that before I was diagnosed with dysautonomia, that I had my internist test for myasthenia gravis, because of droopy eye lids, and fatigue I was experiencing. At the time I didn't have any acetylcholine receptor antibodies, so I find it odd that they would use this drug, especially if it is causing you fatigue. Isn't it true that we can end up with too much or too little acetylcholine depending on what's going on in our bodies, and that you would have to have a medication to counter it?

I am glad it is working for you, but I have been reluctant to ask about using it, although wondered about it, but because I sometimes have a difficult time with rigidity, I'm afraid I would have more incoordination or freezing, because of it. Do they have any reason that it is causing fatigue? Just asking...I've been doing a lot of research on this lately, and am still unsure about this...

[ramakentesh]

I dont mind the sliighty stoned feeling sometimes but on the higher doses I got lost in an area that I know well because it just felt like my brain wouldnt work or something.

I now just take one 60mg dose a day between 10am and noon. If I take it first thing it makes me quite sleepy, i feel better if I take it later. i seem to react better to caffeine on it and definately react better to stress on it. I was up on 180mgs at one stage but that was too much for me I think. At that dosage the benefits werent any more profound I didnt find.

Last time i had a near faint I took a 60mg tablet and it completely went away within 10 minutes. I got out of the car and walked around a nursey with my wife.

[issie]

Just to be able to walk around in a nursery should have been enough to make your day - - it's a free trip to a park. One of my favorite things to do. So, happy your meds are still helping you. (Hope you got some beautiful plants and flowers.)

Issie

[ramakentesh]

thanks!@ I hope so too!

[Chaos]

Rama- Did you have weakness issues before you started the mestonin? I've been wanting to try it because I thought it was supposed to help with weakness but sounds like it might be causing some weakness for you?

[issie]

Rama,

I know you told us but what are they calling the type of autoimmune disorder that they think is causing your POTS? With having AS - it was so apparent that there was autoimmune issues - how come they haven't connected it sooner?

Issie

[issie]

Bump up - for another thread - interest in autoimmune issues.

[MommaBear]

My 16 yr old daughter recently has been diagnosed with POTS and has been practically bed ridden for 3 months now. She was put on Florine's and midodrine but very little improvement. Zero quality of life and massive pain in her head and muscles.

She started mestinon two days ago and it's been amazing - she got up yesterday and we went out and her friends came over last night.

I appreciate the comments and assessments as I do see how she could overdo it on this first initial response to the drug.

But after having a really rough 3 months we are holding our breath as we watch her actually move in the right direction.

[jpjd59]

MommaBear:

That's great news! Just to be able to socialize again is an important thing for a 16 year old. If you get a chance, PM me every so often to let me know how she is doing on this drug. (My 23 year old daughter also has POTS and is basically bedridden and so far has been unable to tolerate any meds).

Pam

[RichGotsPots]

Like like the sound of the #3, but some of the side effects don't sound great...

[RichGotsPots]

I wonder if this would help with the fatigue, one hyperPots said it works Thor them

[bellgirl]

Mommabear, that's great...Hope it continues. I would suggest to get her vitamin D levels checked, as well. My deficiency caused a lot of fatigue, and the mega dose of 4,000 IU's helped my energy level immensely. I'm now on 2,000. Check with her doctor.

[hholmes13]

Glad to see this med is working for some. I'm really nervous, I'm starting mestinon tomorrow. I had held off because of all the possible GI side effects but I can't take it anymore. I've lost most of my functioning and am at my wits end. I'm crossing my fingers I can get some of my life back!!

[peregrine]

I've been taking it for a few months now. So far no side effects worth noting (unusual for me) - I take 60mg 2-3x/day, usually at waking up, then 4-6 hours later, and then sometimes 4-6 hours after that. I worked up from 30mg 2-3x/day for a week.

I thought it wasn't having much effect, so I tried going off of it for 3 days. Definitely more tired and able to do less. So it may be subtle, but it's worth staying on in my case. Some days I can stand longer with it than without it, but not true for all days. Same for concentration. Sadly has stopped doing much of anything for my vision (I envy rama)... but definitely worth a shot.

[ramakentesh]

I had no side effects other than euhporiua and then a mild stoned feeling.