A Recent Medication Lapse Has Refocused My Attention on Self-care

Megan Hunter avatar

by Megan Hunter |

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On a recent day, I popped out to the shops to pick up a few items when I realized I had left my Mestinon (pyridostigmine) medication at home. It was time to take the tablets, but I didn’t have any with me.

It’s unlike me to forget my medications, as I have been taking them for over 15 years. I could feel myself getting weaker, and I was forced to cancel the remainder of the day’s plans. I returned home to take my medication and rest while its effects kicked in.

I felt so stupid for leaving the house unprepared, and instantly stepped back into the role of my own “caregiver.” As an adult, I should know my limits and how to take care of myself, and I have only myself to blame for pushing my boundaries and neglecting self-care.

I take four tablets at specific times during the day. I know when the time to take my medication is approaching because I feel weakness setting in, and I often begin to slur my words. Most patients with myasthenia gravis are prescribed Mestinon after diagnosis. I experience dreadful side effects, including “Mestinon-tummy” — I always know where the nearest toilet is in every situation. But I know that this treatment works to maintain the messaging between my nerves and my muscles.

I take a tablet at 6 a.m., 11 a.m., 4 p.m., and 9 p.m., just before meals, with the final dose before bedtime. Mestinon maintains my strength and prevents falls, lessens my “drunk” appearance, and treats my other symptoms.

Along with my prescribed medication, I take multivitamins (excluding magnesium, which is contraindicated), a probiotic (to protect my poor tummy), anti-nausea and anti-diarrhea medications, sleeping tablets, painkillers (including controlled medications and opioids for my exceptionally bad days), antidepressants, and calcium. I also enjoy a protein shake at least once a day and add collagen to my morning cereal. I keep extra Mestinon at the office, in my husband’s car, in my car, and in a cooler bag that I carry with me at all times. I refuse to be caught out again.

Given this experience, my advice is to always plan ahead. Don’t allow your health to destroy your freedom. Let’s end 2019 on a high. We deserve it.

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Comments

Yeshua A Holiday avatar

Yeshua A Holiday

Why do you take mestinon before you eat? You are suppose to take it with food. That is why you have mestinon tummy. If your doctor told you to take before food get another doctor no joke. You will end up needing surgery because of the loss of you stomach lining.

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Megan Hunter avatar

Megan Hunter

Unfortunately I cannot swallow without taking my Mestinon - luckily we are all different :) I do suffer with mestinon gut but I don't have any other option as I choke on my own saliva even.

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Stan Schildkraut avatar

Stan Schildkraut

Thank you, Ms. M. I was diagnosed about 9 years ago. I sort of self medicated for a while. Not a thing to do. Not even for a short time.
The swallowing difficulties became exceedingly worse. I to was on my saliva
.
I lapsed into a coma the beginning of April 2014. Diagnosed as acute respiratory failure. My wife told my doctors about my Myasthenia Gravis. I'm home since May 2015. A monthly regiment of Plasmapharesis abd daily medicines work as well as a gentleman in his 70s should expect. Thanks again for reminding me I'm not alone and I'm definately NOT UNIQUE. Thanks again

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Stan Schildkraut avatar

Stan Schildkraut

Stan Schildkraut: I meant
to say I also choked on my own saliva.
I have learned more often than not to handle the Drunk Syndromem.

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JoAnn Medi avatar

JoAnn Medi

I was finally diagnosed a year and a half ago. I had a crisis exactly a year after. It's been a struggle but I have kept myself busy learning as much as I can about this illness. I have learned that most importantly is to take control of it and not vice versa. Nobody knows yourself better than you. Study your symptoms, what triggers them, which foods to eat, how you feel after taking your meds and which medications work best for you. Avoid any stress and stay active. Read about the pros and cons of your medications. Carry with you the list of medications that will exacerbate your illness and always keep your meds with you. Doing a self evaluations will give you a better outlook of the control you will have about your health. You will be your best advocate. Doctors are not always right!!!!! Take care be safe.

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Sharon avatar

Sharon

Thank you for saying “doctors are not always right”! I have a neurologist who I feel is trying to drive me crazy! He argues with me one day saying I have MG and puts me on all this medication and then when I get severe reactions from too much medication, he tells me it’s all in my head and I need to see a psychiatrist now to check my cognitive issues. He also told me I don’t have the disease as bad as some of his patients so don’t visit ER unless you can no longer eat, walk or breathe on your own. I quit taking the mestinon and I no longer fall, get slurred speech or shortness of breath??? I do not understand?

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Abdullahi Isah avatar

Abdullahi Isah

Am always having the same issue am have never suffer any difficulty in breathing or unable to coordinating my muscles difficulty in speech but suddenly I fell sick and with I myself I don't now what wrong with i continue having difficult speaking walking dropping of the lid after taking one medication name azithromycin at d face time am thinking it's the site effect of the medicine but d symptoms continue then I consulted my doctor he suddenly diagnose me that I have mysthial gravis, then I proscribed some medication for but to my experience they medicine just worst the symptoms and I just returned to the doctor for follow-up but he add the dose of d medicine before someone period am totally addicted to thet medicine I can't even take my meal without dat medicine then suddenly I just stop taking ol d medicine am just started feeling better and return to my normal activities without taking the medicine for more than four months but suddenly now the symptoms has returned again am I need ur advance should I continue the medication or

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Barbara Amdur avatar

Barbara Amdur

At least you are convinced that Mestinon really helps you--and therefore forgetting a dosage is important for your health.
I, on the other hand, have been taking 4 60 mg Mestinon pills a day, for 2 1/2 years, and , as far as I know--it seems not to help me one iota! I take Prednisone, plus Azathioprine--and I think those meds are more helpful.
However, with all the above drugs, I still suffer greatly with Generalized MG------causing tremendous muscular weakness and 2 ER visits because of "Bulbar Crises"!

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Judybrookman avatar

Judybrookman

Can you tell me how bulbar crisis affects you

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Pallavi avatar

Pallavi

Hi,
Just in a bad place right now. My daughter was diagnosed when she was 4. Mestinon helped and went into remission at 9. But have been complaining of severe fatigue for last several years...but Mestinon doesn't do anything.

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Russ Hanson avatar

Russ Hanson

I had stashes in my cars, at work, at home and a few in my wallet that were for emergencies. When I first had MG, I was almost paranoid when my bottle started running out worrying that I might be without. So my neurologist prescribed "up to eight 60 mg pills per day" and normally I took only 6, so managed to get ahead and feel comfortable! As my immune suppressant meds worked, I was able to go to only an occasional dose, and my leg cramps, my profuse perspiration and my occasional twitchiness disappeared, but I still have a huge bottle just in case.

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Tommy Ellis avatar

Tommy Ellis

Hi Russ,
I am exactly the same, got stashes of Mestinon everywhere for that specific time I need it and I'm not at home.

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Joan Magnusson avatar

Joan Magnusson

I sometimes wonder if Mestinon helps me, until I don't take it... I am pretty vigilant about having my meds with me, but have had those occasional lapses. I am amazed how many meds I now take to just keep mobile and functioning.... We do need to be responsible for taking care of ourselves!

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Deborah avatar

Deborah

Be sure to keep Mestinon in the pharmacist packaging that likely has at least one or two packets to absorb moisture. I learned the hard way that Mestinon is very sensitive to moisture when put in pill containers without those packets and this can very easily affect the drug potency from temperature or moisture change or crumbling and becoming "soggy".

Reply
Roger D. Carpenter avatar

Roger D. Carpenter

These comments have helped me tremendously. I have a much better underon for some of my recent new symptoms. I was confused because I also take 10 other meds. for other chronic diseases. More detailed conversations with doctor would have been extremely helpful.

Reply
Dominick solitario avatar

Dominick solitario

Dominick s.
Diagnosis with MG 2 months ago on pyridostigmin and azathioprine. So far doing okay 66 years old still working. Yes weakness in 4 hours after taking. Jaw, speech, eyes. Thanks I love this
Format and helpful remarks.

Reply
Tety Ngadiman avatar

Tety Ngadiman

Hi, any body know thyemectomy in MG? My husband diagnosed 2 weeks ago, generalized MG, thanks

Reply
Emily avatar

Emily

I had a thymectomy 17 years ago when first diagnosed and it worked wonders! After the surgery I rarely had to take meds. Now 17 years later I’ve had a flare but I would recommend the surgery!

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