for those who got worse with mestinon

Pearshaped

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Dr.Systrom seems to have quite a success with Mestinon on his patients.
I'd be interested to hear what others WHO GOT WORSE on Mestinon found to be helpful.
Im also wondering if you are mild/moderate or severe and how onset of ilness was.My naive hope is to find similarities in our group and eventually could define a subset of ME.
I myself got much worse from 10mg Mestinon.tried it several times.Midodrine didn't seem to do anything so i'll start with florinef.
 
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I'm a patient of Dr. Systrom, and I didn't do well with Mestinon--I got terrible chills, constipation, and was extremely short of breath (for me, the drug seemed to do the opposite of what was expected!). I started off on 30 mg 3x/day and then worked up to 60 mg 3x/day, then I took the extended release pill which is 180 mg once a day. I was able to stay on it for a few months, but then the side effects got so bad that I gave up. I felt like a bad patient for failing on a drug which was supposed to help!

After a few months I decided to try Midodrine (which was an alternative he suggested), and it's helped a little but there has not been a dramatic improvement in my day-to-day functioning. However, the results of my exercise tests have improved quite a bit: my peak V02 went from 78% of predicted to 93% of predicted, and my VE/VCO2 slope went from severely abnormal to borderline abnormal.

Florinef was the other drug he suggested. I'm interested to hear how you do on it!
 
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Sushi

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I myself got much worse from 10mg Mestinon.tried it several times.
When you say you got worse, what exactly happened symptom-wise? It took me at least a month to work up to 30 mg twice a day and in that time I had lots of lousy side-effects—mostly gastric. I have not tried to add in another 30 mg dose but I’d guess I'd have the same side-effects. The best positive effect I’ve had is the cessation of daily migraines. Go figure! :cool:

I could not tolerate Midodrine as even tiny doses spiked my BP. I couldn’t tolerate Florinef either—also BP spikes and headaches. I have neurally mediated hypotension.
 

Pearshaped

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thank you for your sharing @Rebecca Re
and @Sushi.
i was like Rebecca even more out of breath and i felt even more ill and weak.actually it felt like a crash and it got me two days minimum to recover from it.(i have the same crashes with Q10)
@RebeccaRe nice to hear you were still able to improve.Do you know if Systrom has an explanation why Mestinon works not for some?I let you know about the florinef.
@Sushi Interesting,i strongly suspect to jave NMH too,but im not sure.what works best for your NMH?
 

Pearshaped

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@ all was your onset graduall or sudden? was it viral or something else?
do you (in your personal case)suspect low immune dysfunction or more something like autoimmunity?
 

Sushi

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@Sushi Interesting,i strongly suspect to jave NMH too,but im not sure.what works best for your NMH?
Strattera worked like magic for a few years as I was parasympatheticly dominant and strattera increased norepinephrine in the synapses. It doesn’t work for me now though so I rely on knee-high support socks, salt, and fluids and electrolytes.

I had symptoms for decades but an overnight crash into severe OI after a week of intense exercise. I have never recovered from that crash.
 

Pearshaped

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thanks for info i'll look into strattera.
wow yes,scary.. those crashes which change everything.
Im soory to hear that.
 

ryan31337

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When I started Mestinon a couple of months ago I initially felt it was making my orthostatic symptoms worse, quicker to tire and become breathless. The other side effects were a nuisance too.

Thankfully these issues seem to have gradually faded. I have certainly noticed that late nights do not hit me as hard as they used to, normally going to bed at 2am would be guaranteed to induce PEM and worsed autonomic dysfunction in me the next 2 days, but not any more. I'm hoping that I may also cope better with other stressors like exertion, will have to see in due course.
 

Avena

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I crashed after a few days on 10mg Mestinon/day. Same symptoms/type of ME-crash that I would get after doing way too much for my capacity over time. I do normally tolerate new medications well.
 
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@ all was your onset graduall or sudden? was it viral or something else?
do you (in your personal case)suspect low immune dysfunction or more something like autoimmunity?
My initial onset was more gradual. I had two or three illnesses in the months before I first developed symptoms. These illnesses were nothing out of the ordinary: low fever, aches, etc. A few months later I slowly realized that I was feeling more tired than usual, along with some aches, a mild sore throat, and swollen glands.

However, after a year of being sick I began to feel better, and I had about a year of (almost) remission. But then one day I woke up and I was sick again, without any obvious triggers.

Based on my test results, I think in my case it may be autoimmunity. But I'm not certain.
 

Pyrrhus

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Strattera worked like magic for a few years as I was parasympatheticly dominant and strattera increased norepinephrine in the synapses.
Strattera/atomoxetine worked wonders for me too, although the increase in energy led to a very very bad crash.

I honestly don't understand why Systrom first tries a cholinergic drug like mestinon instead of first trying an adrenergic drug like strattera/atomoxetine or midodrine. His very own research implicates the adrenergic receptors that control the constriction of blood vessels...
 

Sushi

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I honestly don't understand why Systrom first tries a cholinergic drug like mestinon instead of trying an adrenergic drug like strattera/atomoxetine. His very own research implicates the adrenergic receptors that control the constriction of blood vessels...
Good question, though my Dysautonomia specialist found that the majority of his patients did not get the benefits from Strattera that I did—perhaps because they were already high in norepinephrine. But for those who did respond, it was a big response and it is too bad that more doctors don’t give patients a try on it if their testing indicates it.
 

ChookityPop

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When I started Mestinon a couple of months ago I initially felt it was making my orthostatic symptoms worse, quicker to tire and become breathless. The other side effects were a nuisance too.

Thankfully these issues seem to have gradually faded. I have certainly noticed that late nights do not hit me as hard as they used to, normally going to bed at 2am would be guaranteed to induce PEM and worsed autonomic dysfunction in me the next 2 days, but not any more. I'm hoping that I may also cope better with other stressors like exertion, will have to see in due course.
How has your Mestinon experiment gone?
 
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However, the results of my exercise tests have improved quite a bit: my peak V02 went from 78% of predicted to 93% of predicted, and my VE/VCO2 slope went from severely abnormal to borderline abnormal.
Hopefully I'm not derailing the thread too much, but @Rebeccare are you saying you have had multiple CPETs? Have you found the tests to be helpful for managing your thresholds for activity and finding your energy envelope? My doctor offered me the option of taking a CPET, but I opted not to for the time being because of the near certainty of crash/downturn after the test. Was the crash manageable for you? Or at least was the test worth it despite the crash?

Based on my test results, I think in my case it may be autoimmunity. But I'm not certain.
Has your doctor recommended anything to address the potential autoimmunity? Just curious if you've found anything in that area that is helping your ME symptoms.
 
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@Rebeccare are you saying you have had multiple CPETs?
Yes, I had one before beginning treatment, and one the following year to see if there was any objective physical improvement.

Have you found the tests to be helpful for managing your thresholds for activity and finding your energy envelope?
Honestly, I think my Fitbit has been more helpful for that than the exercise testing. But the test still did give me helpful information about how well (or not well, as the case may be) my body was functioning

Was the crash manageable for you? Or at least was the test worth it despite the crash?
Yes, it was manageable for me. However I've known people who have really been knocked out for a while. With this test, you pedal on an upright exercise bicycle as the tension gradually increases until you simply can't do any more. The silver lining is that it doesn't last very long--I think I lasted about 7-8 minutes? But it's hard! :xpem:

Has your doctor recommended anything to address the potential autoimmunity? Just curious if you've found anything in that area that is helping your ME symptoms.
I'm afraid not--that's the element which no doctor seems to be able to figure out.