Mestinon 2: The Journey Continues

A long time ago, in a flat far, far away…

Episode IV: A New Drug

It is a period of bodily war. A new medication, striking from a hidden base, has won its first victory against the evil Dysautonomia (autoimmune nervous system dysfunction & POTS). During the battle, Endochick’s spies managed to steal secret plans to Dysautonomia’s ultimate weapon, DYSPHAGIA, an armored space station with enough power to destroy any chance of a good meal. Pursued by Dysautonomia’s sinister agents (dysphagia, dyspnea, & tachycardia w/syncope), Endochick races home aboard her starship, custodian of the stolen plans that can save her people and restore freedom to her taxed autoimmune system….

Instead of “the force”, the myasthenia gravis medication, Mestinon, has saved my rebel forces.

It is odd that this medication is actually working for me, given that my first go with this medication had very mixed results. In fact, I was hesitant to try it again.

Apparently, as my neurologist explained, my illness during that weekend and taking it on a full stomach (I insisted I did this because of numerous patient accounts suggesting this method to eliminate upset stomach) contributed to my reaction with the medication.

I agreed to have another go. After all, I was badly losing this battle. My next options were increasing water intake (my endocrinologist advised against this) and those lovely compression stocking – the kind that go to your WAIST. The summer I had to wear these… well… it was miserable. Seeing as we are headed into cold weather, this option didn’t seem to bad. But if you’ve ever worn them, you would understand why any one would not want to venture down that road if they could help it! They are nearly impossible to get on. They need to be hand washed EVERY night or they start smelling like a care home. And you are more likely to get an itchy rash, especially if the weather is dry. Frankly, I already have an awful time with dry skin because of my thyroid. I have no interest in compounding the problem!

So… to avoid these inconveniences, I was willing to give it one more go. The doctor reassured me of the medication’s short-lasting effect (usually 4-6 hours). He also advised taking it 1 hour before a meal, on an empty stomach. This made me nervous.

I found, when taking it this way, that within 40 minutes I can breathe easier and swallow. Then by 1 hour, I have no problem eating. I can eat slightly more in one sitting (about 1.5 cups worth of food), but I can swallow it! There are still some textures I cannot do, and that doesn’t concern me too much. At this time, I don’t feel it’s worth increasing the dose just so I can eat pasta. And by eating these small meals every 2-3 hours, my metabolism is even throughout the day. I don’t get HUNGRY!

With my food sensitivities, eating bigger meals causes problems. For instance, I can have a little bit of dairy in spurts. That’s often doable, except when it’s a heavy dairy dish and I eat too much. Then I’m in trouble. This way, I don’t eat that much anyway. And I find myself eating healthier foods ALL THE TIME because I want each little meal to count.

For now, Mestinon is fighting the evil battle and it’s blown up the death star. I’m just hoping we don’t end up with The Dysautonomia Strikes Back sequel, in which I have to up the Mestinon. But I will cross that bridge if I ever get there.

Bottom line: If you’ve exhausted all options for your dysautonomia, especially POTS, and you’re looking into medications other than beta blockers (I cannot take), check out Mestinon. Not every neurologist or cardiologist will prescribe this, but due to wonderful new research, this medication is growing a fan base for the treatment of POTS.


5 responses to “Mestinon 2: The Journey Continues

  1. Endochick,

    I’m so glad that you’re doing better with the medication on the re-try!

    Having personal experience with compression stockings, I can understand the desire to avoid them! Mine are only knee high and they are very difficult to get on and off. I can’t imagine wearing ones that are waist high.

    By the way, I love the format you used for this post. 😉


    • Thanks, Jeanne. I am elated this medication seems to be working now. I see my neurologist in December and I’m hoping this will help me avoid compression stockings. Those things are a nightmare – especially the waist high ones. Be glad you’ve never had to use them.

  2. Endochick,

    With the severe neuropathic pain resulting from my botched January 2008 (nerve-cutting) surgery, I can barely tolerate pants of a light material against my thigh. It would be physically impossible for me to wear waist-high compression stockings. I simply wouldn’t be able to get them on or tolerate the pressure on my leg.


  3. Hi endochick
    I am delighted that you appear to have some progress with your medications. I love reading your thoughts and have sent you a blog award. You can find it at:
    Wishing you pain-free days

    • Foxy – thanks! It’s been a while since I’ve seen you around. Thanks for the award, but unfortunately, I don’t have time to post it and send it forward. But thanks for thinking of me 🙂 – E

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