Cholinergic Chrisis From Mestinon (Pyridostigmine)

[Guest Alex]

Has anyone taking mestinon (pyridostigmine) for their POTS ended up having cholinegric crises?

I've been taking it for 18 mo now and despite being on the same dose for over a year (this is a lower dose than the one initially prescribed) I had several (4 or 5) such crises out of nowhere.

My HR drops into the 40's, I get extremely dizzy but my BP is normal (yesterday was 120/80), my pupils are huge so my vision is blurred, all my muscles twitch, I sweat but I am cold, salivation and tears are increased, bronchial secretions are also increased, I have extremely loose bowel movements (sorry if tmi) and yesterday for the first time my speech was somewhat slurred as my tongue felt almost paralyzed. This whole thing lasts anywhere from 30 min to an hour but the feeling is extremely uncomfortable and it leaves me exhausted.

I did mention these random episodes to the dr who prescribed the mestinon and he didn't seem too worried. He said it's OK as long as it's a random occurrence. "Dr Google" lists these as emergency situations....

Thanks for your input.

Alex

Edited August 4, 2013 by alex74alex

[Tobiano]

Hi Alex. That sounds so scary. I'm just about to start Mestinon (60 mg twice a day) and will let you know if I experience any side effects. I'm interested to hear what others say about cholinegric crises. Sending positive thoughts your way.

[Tachy Phlegming]

That sounds bad.

You might want to ask if you can take even less here and there.

If I put a wet towel or an ice pack somewhere on my body (probably for about a half hour) and I get twitching, I lay off the Mestinon a little bit. If I had episodes like that out of nowhere and wanted to remain on a relatively higher dose, I think I'd often test that way to figure out whether I should reduce it a little.

I've never had anything like what you describe but I can't imagine it's good for you.

[Guest Alex]

Thanks Tobiano,

it was quite scary but it's over now. The "good" thing about mestinon is that it has a short half life and it's usually out of my system in 4 hours. The weird thing yesterday was that this nasty kind of reaction happened 3 hours after I took my pills and lasted for a good hour and a half. Usually I feel the mestinon kicking in in 45 - 60 min. If I take it without food, I know I'm in for "ride" as my GI system is always affected - cramps galore. Food seems to help and in time my GI reactions have lessened.

Yesterday I was tempted to go to the ER but resisted the "urge". I'm on a much lower dose of mestinon than the one you'll start - I'm taking 30 mg twice a day, but I have taken doses as large as 45 mg in the past and did not have this type of response, except for a couple of times.

I have posted some of my personal experiences with mestinon in the past - you should be able to find those posts easily, also there are others who shared their mestinon stories. Worth searching the forum and reading perhaps before you start taking it.

Alex

[Guest Alex]

Tachy, thanks for your input.

My mestinon dose is already "ridiculously low" (30 mg bid) according to my dr and he actually encouraged me to try to increase it to 45 mg bid. Needless to say that's not going to happen any time soon.

Alex

[dkd]

Just curious--do you take it for dysautonomia or MG?

I'm awaiting test results for MG, so this drug might be in my near future.

Sounds scary. Glad you're ok now.

[Guest Alex]

dkd,

I'm on it for POTS. My MG tests have come back negative. My dr tested me for MG before initiating the mestinon treatment With MG you actually need the drug for different reasons.

Alex

[Psalm 23]

Hi Alex,

I'm so sorry you experienced such a frightening occurrence. I'm glad it resolved and you are okay. That must have been a long hour and a half I'm sure. Good thing you didn't have the added trauma of ending up in the ER though. I have been on Mestinon 60mg tid for about 22 months now but have never experienced any adverse reactions from it. Being cautious with your dosage is a good idea. Take care.

Janet

[Guest Hanice]

The thing is....

If it leaves your system in 4 hrs, then why would it cause effect 3 hrs in and not almost immediately? And you had been taking it for a while too.... why did you lower the dose to begin with? Were you having a reaction prior to this, maybe on a milder scale?

You know how I feel about meds.... though I read about this one a few days ago and I wanted to fly to my doctor (metaphorically) and beg him for it. It sounds amazing!

Are you taking any other meds other than this one?

If you had been taking it for a while without any adverse

effects then maybe it wasn't that. Thats kind of crazy that your doctor said to keep taking it even though it gave you symptoms listed under "emergency situations".

I hope that never happens again. Glad you're feeling better Alex!

[Guest Hanice]

http://www.drugs.com/drug-interactions/pyridostigmine.html this might be helpful! ♥

[spinner]

Do you have a link to the definition of a cholinergic crisis?

Id understand that as a dysfunction in your sympathetic nervous system and your unsympathetic.

I have had crises of bradycardia where my pulse rate has gone as low as 44, but that was probably

a combination of dehydration, salt, glucose, arrythmia, and the klonopin im on.

I get very weak and disoriented when that happens. Is the mestinon helping you that much that

the trade off is worth the aggravation of these problems?

[ShakeyTheOwl]

Hi Alex

I have had this happen a few times from this medicine. (HR in 40s is no fun)

Am fairly new to taking it, started in May.

Initially it was finding right dose. Am finding 45 twice day is tolerable.

What helped me was knowing in advance to lower dose if HR <50, increase as tolerated. (written on script)

And yes, thank goodness this medicine is short lived !!!

Also have been tested for MG and negative.

[Guest Alex]

Thanks all for your input and for being here for me.

Janet, I'm definitely not going to increase my dosage at least for a while, and yes, I agree with you, going to the ER would have only made things worse.

Hanice, as I mentioned I had this reaction several times since I started taking mestinon and I know without a doubt that it was the cause of my episode the other day. My dr knows about my episodes and simply advised me to ride them out. He said that they are possible with this med, and that I should not go to the ER as it would be useless. They self terminate within 1-1.5 hrs tops, and the emergency meds administered in such circumstances (particularly atropine) may do more harm than good in my case - they tested my reaction to atropine during my ttt. With a cholinergic crisis there is no "milder"version. You have it or you don't but the symptoms associated with that are quite familiar to me as I've dealt with them (on a lower scale though) since I started taking mestinon. I am not taking any other meds for POTS, and whatever supplements I'm on, I've been taking them for months. In other words, I haven't made any changes in my med regimen in more than 6 mo. Mestinon has been my miracle med. It literally made the difference between being bedridden and being able to quasi function. Also, thanks for the link.

Spinner, I do have the description of a cholinergic crisis printed out. I'm sure an online search will point you in the right direction. I would post a link but my copy paste function is disabled(?!) not sure why. It has nothing to do (in my understanding) with the ANS, it's an over stimulation at neuro-muscular junctions due to an excess of acetyl-choline. As I said before, this med is really not one I'm willing to stop taking - it's my only POTS med and its benefits definitely outweigh the side effects. I was on klonopin for a year yet never experienced anything like you're describing, yet the same klonopin messed me up in so many other ways...

Shakey, I was hoping to get to 45 mg bid but it's going to take me a while to build up the courage to increase my dose. It's good to know I'm not the only one experiencing this, but I'm sorry to hear you had to go through something similar. My dr has allowed me to tweak my dose as well so I have only taken 15 mg instead of my regular 30 mg dose on Sat evening. I'm back to normal now though. Fingers crossed.

Also my dr said people should be tested for MG before starting this med, so Hanice, make sure you mention this to your dr if you think you want to give this a try after having your diagnosis. Another thing, mestinon is not a first line of treatment for POTS, most drs start with the typical beta blocker florinef combo and then mestinon is added on top of those. Not to mention that there are different flavors of POTS and mestinon may not work for all of them - my 2 cents.

Again, many thanks everyone.

Alex

[brethor9]

WOW! Alex I am sooo sorry you have been having these episodes!! ....sounds similar to the autonomic storms I have suffered in the past..... still do but thankfully my mast cell meds usually pull me out of them. I agree that you should definately hold at the dose you are at and maybe going even lower if they continue (you could always liquid compound)..... as you know a lot of us are super sensitive to medications...also my specialist told me that certain medications tend to build up in the body over time and you don't metabolize them the same...... (I started having this issue with Florinef and in combination with an enlarged liver) just food for thought hang in there! (((big hug)))

Bren

[Katybug]

Alex, Given the chemical reactions affected by this drug and the fact that you mention that eating helps sometimes, is it possible that your blood sugar may be being affected? It might explain why you would have a reaction late in a dose. Maybe eating some complex carbs and protein an hour or two into the dose might lessen the response? Just a thought. Hope you get this one under control cause it sounds awful.

[Guest Alex]

Hi Bren,

I remember watching in disbelief the youtube clip of one of your autonomic storms. I'm glad to hear things are better for you, but sorry to hear you still experience them. My crises are slightly different though and are drug induced. I am holding the dose for now and my prescribing dr trusts me to adjust my dose accordingly. Mestinon, unlike florinef doesn't build up. It's usually eliminated from the body within 4 hours, so most patients who take it need to take repeated doses throughout the day or the extended release version of it. I'll stick to my regular pills, I "like" them because of the short half life (to me that's the equivalent of short lived side effects if and when they happen) I'd be scared to try the XR ones. Florinef is ....well a steroid and I know I had my share of problems with it, but none as bad as those you have described in the past.

Katie,

I take mestinon with food because it tends to be harsh on my stomach and intestines. I risk painful cramps if I have no food in my stomach. The blood sugar has nothing to do with this, but thank you for the thought.

Mestinon works by prolonging the action of acetylcholine (Ach)- a neurotransmitter used by the autonomic ganglia. This is a cluster of cells that transmits signals from the CNS to the peripheral nervous system. These signals are supposed to be minimal when lying down, but they increase drastically under orthostatic stress. So it's believed that this drug works to increase the blood pressure "only when you need it" which for us would be when we're standing, or performing different types of activities. Also Ach is supposed to keep your parasympathetic nervous system (the rest and digest one) from going into withdrawal and allowing the sympathetic nervous system (the fight and flight one) to take over upon standing. This is just my understanding of how this med works.

Alex

[Tachy Phlegming]

"These signals are supposed to be minimal when lying down, but they increase drastically under orthostatic stress."

Hi Alex,

Do you remember where you saw this info and do you have a link?

[Guest Alex]

Tachy,

it must have been one of the articles on mestinon and its use for dysautonomia...I definitely didn't'come up with that on my own LOL. I'll try to remember and get back to you.

Alex

[Guest Alex]

OK,

I can't copy paste now, but if you look up "new orthostatic hypotension treatment reduces symptoms without causing high blood pressure" you should come upon an article from the national institute of neurological disease and stroke that was released in April '06.

Let me know if you can't find it and I'll try linking it again.

[Guest Alex]

I remembered - I actually read that in the q&a section of one of dinet's newsletters. It was part of Dr Suleman's explanation on how mestinon works. The article I mentioned above states the same thing though.

Alex

ETA

page 6 top, right column for the answer

Edited August 7, 2013 by alex74alex

[Tobiano]

Sorry Alex... I don't mean to hijack your post... hope this is okay that I have a somewhat relate question. I have just been prescribed 60mg twice a day. It was at the very end of an appointment - I was given no guidance on spacing this med during the day and there was no time for any more questions. Sounds like the med only lasts about 4 hrs but I'm nervous about taking doses too close together because of the possibility of ACh buildup. Of course, I do plan to check with my doctor about my specific case. I am just curious what others have done.

[Guest Alex]

Hijack away Tobiano.

When I got my mestinon rx I was instructed to take 45 mg at 8 AM, 30 mg at 12 PM and 15 mg at 4 PM - so my doses were exactly 4 hrs apart. I was already on propranolol 10 mg bid and florinef 0.1 mg bid.

My first impact with mestinon - about 30 min after I took my first dose (45 mg) I got warm (it was winter and I felt like throwing my clothes off), I started sweating and I felt quite energized and ....a bit high. Also my vision got a bit blurry, my eyes were all teary and I almost felt like I was drooling (I was making soooo much saliva). I also felt strange twitches in my muscles, but my dr warned me about those so I knew it was OK. The subsequent doses didn't have the exact same impact but were almost along the same lines. In time I learned that I should have some food in my stomach if I want to avoid nasty painful stomach and/or intestinal cramps. By the way, my intestinal transit has never been a problem since I'm on mestinon. If in the past I may have had occasional episodes of constipation, that's no longer an issue (and I won't get into more details here ). Also, you may actually "feel" when the dose wears out. I can usually tell based on my HR.

I'm getting 15 mg pills so that I can go as low as 3.75 g (if I want to). You might want to keep an eye on your HR, BP, as well as the other things I have mentioned, or just make note of anything unusual you may experience (good or bad).

Definitely talk to your dr about this and see what his expert opinion is Another source of info may be your pharmacist, but most of them (mine included) may be familiar with MG patients taking mestinon and in their case, I believe the mechanism of action is different. Either way, it's worth asking.

That ACh buildup is really nasty! I'm living proof of that.

Feel free to message me if you have more specific questions.

Good luck!

Alex

[Tobiano]

Thanks Alex! I appreciate the info.