What Is Mestinon? The Medication That Is Making the BIG Difference

Dahlias

Great things can happen when doctors do two things: 1. care deeply about your individual case and your quality of life, and 2. are willing to coordinate care.

You'd think coordination of care would happen a lot--that it would be super easy in this world of electronic medical records and email. But it doesn't. There just isn't enough time. Thankfully, all of my doctors, except Dr. ANS, are all part of one medical system locally and they do tend to keep up on what the others are doing regarding my care.

Dr. ANS is a willing participant in coordination of care. It's harder to get that willingness from other doctors. But not Dr. GI and Dr. Listener (my PCP). 

Many people have been wondering what has helped me to have such a turnaround in my health over the past several months--and much of it is due to a new medication and the teamwork between Dr. GI and Dr. ANS.

This new medication is called Mestinon.

During Dysautonomia Awareness Month one of the questions I received was: What is Mestinon and how does it work? 

I have not written much about my struggles with gastroparesis, which have become more difficult to manage over the past couple of years. In the winter of 2013, things had become so severe that Dr. GI fought for me to be able to receive Botox in my stomach to relieve the pain and inability to eat much. This worked. Big time. It stopped the awful cycle I was in, but it isn't something that makes sense for us to  do on a regular basis. (It's not covered by my insurance so the health facility has to pick up the cost, Dr. GI has to fight for this to happen, and it's not always a recommended treatment choice). I think it's a miraculous option and am sorry it's not more readily available to people with gastroparesis. 

Since that time in 2013, Dr. GI and I have been working together to try to manage my gastroparesis in other ways, which I can write about in another post.

Last summer, I was still very frustrated by my symptoms, and received the following email from Dr. GI:

Emily: Was reading an article about GI Motility over the weekend. One of the meds discussed to help accelerate intestinal transit is called Mestinon, or pyridostigmine. It is used for POTS as well. I had emailed Dr. ANS about it--he said that you ave never been on it, and suggested that it would be worth trying. It can sometimes lead to diarrhea, hyper salivation, slowing of the heart rate, and breathing difficulty. You would stop the Corgard when beginning this medication--it may be possible this medicine is contributing to some of your fatigue. --Dr. GI

Wow! Right?! How much better can my care get? I think I probably cried when I got this message. I didn't even have to email Dr. ANS myself to ask what he thought of the med. It had already been done.

It took a ton of work for Dr. GI to make everything happen so that I could get this medication. It also meant him taking extra time over his weekend to read into other possible ways to treat me. 

Dahlias and Marigolds

First, I'll provide the description of Mestinon that Dr. ANS has written before I explain how it has worked for me.

Brand Name: Mestinon

Generic Name:  Pyridostigmine Bromide

Type of Drug:  acetycholinesterase inhibitor

Indications: NMH, POTS, Gastroparesis

Action:  Pyridostigimine bromide (Mestinon) is a medication that has been used for decades to treat a neuromuscular condition, myasthenia gravis, and it is also used to prevent damage from certain nerve gases during chemical warfare. It is also used to treat gastroparesis and increase GI motility. Its action is to interfere with the bread won of acetycholine, a neurotransmitter, thereby making more acetycholine available at nerve and muscle interfaces. Greater concentrations of acetylcholine in the autonomic nervous system would be expected to result in a lower heart rate. In several studies, Mestinon was recognized to cause a slowing of heart rate. This response led some to postulate that it might be helpful for those with neurally mediated hypotension or syncope (NMH) and postural tachycardia syndrome (POTS). Formal study has confirmed those hypotheses, and the drug has been shown to have a therapeutic benefit for some people with POTS and NMH mainly by increasing the amount of parasympathetic tone in the autonomic nervous system.

Side effects: Mestinon is generally well tolerated, but the most common side effects are nervousness, muscle cramps or twitching, nausea, vomiting, or diarrhea, stomach cramps, increased saliva, anxiety, and watering eyes.

*Other than a couple of sentences I have added about gastroparesis, this text is taken directly from a hand out from Dr. ANS.

Because of my sensitivity to medications, Dr. GI and I had to fight VERY hard to get the insurance to approve the liquid form of the medication over the pill form. Hours of time on both of our ends--calls, emails, letters, hearings. However, when I tried to take the pill form, I could not split it into a small enough dose to tolerate it. Had Dr. GI not fought for the liquid form of this medication, I would not have succeeded on it.

We started at a baby dose in the late summer of 2013, and since then I have been gradually increasing my dose. As I've been able to increase the dose, I'm able to sit up longer, I've been able to decrease my beta-blocker, I have more energy and stamina, I can tolerate more PT, I can walk farther, I have more hours in the day to do things, and my motility has improved. 

These changes have really helped to create a positive feedback loop in which the Mestinon increases my functioning and improves symptoms so that I can do more. In turn, I get stronger, and can do even more. :)

In addition to the improved level of functioning the Mestinon provides, because it improves parasympathetic tone, it has also helped to calm my overactive sympathetic nervous system. This means that I do not have the extreme feelings of fight or flight that I always had before. 

While doing some sorting through my zillions of piles of papers recently, I found a prescription for Mestinon from 2002 written by a doctor that specialized in POTS, but who was not a good fit for me. The script was for what would be considered the standard dose for POTS (60 mg 3x/day). Had I tried the Mestinon at that time, under the supervision of that specialist, I would never have succeeded on it.

I tried so many medications early on in my illness that weren't tweaked to accommodate my sensitivities to medications. So, despite my 'college try' of many, many medications, I failed on them. My whole team (Dr. GI, Dr. ANS, Dr. Cardio, Dr. Listener, Dr. Naturopath) now understand this and work with me to find doses I can tolerate. 

With the Mestinon we started with maybe 1 mL 2x/day. I'm now up to a total of 13 mL/day spread over four doses. Over the next several months, I will continue to increase the medication as tolerated. Dr. ANS, Dr. GI and I have all continued to dialog on how to increase the medication. 

While I suppose Dr. GI hoped the Mestinon would be more successful for the gastroparesis than it has been, we are still rejoicing in the huge impact it has had on my overall level of functioning.

Time + Patience + Attention to individual differences + Coordination of care + Compassion + Listening + Two fantastic doctors = One very happy team and one very, very happy girl who is enjoying all of her new freedoms.

The story of the Mestinon and my success on it is one that illustrates not just how much of a difference finding the right medications can make, but how absolutely vital it is to have the right doctors--ones who are finding these medications and making them work for me.

Blessings,

Emily