Have you found some things make your symptoms suddenly worsen, e.g., nicotine?

[Rhyothemis]

Some people with MSA experience a sudden worsening of symptoms with exposure to nicotine / tobacco products. Has anyone here experienced that? How about other stuff like coffee (some people with Episodic Ataxia are sensitive to coffee), other food items, cleaning products, or supplements?

[Yanno]

This is interesting as Jackie has shown an increase in her coffee intake recently. I’m a firm believer that sometimes the body wants the very thing that it’s intolerant of.

Where does your examples of this come from?

Regards, Ian

[Rhyothemis in reply to Yanno]

My father experienced nicotine intolerance with his MSA, the symptom that really worsened was dysarthria (he didn't have much dysarthria otherwise). I remember my sister telling me, after an evening phone conversation, that she thought my father had been drinking excessively. Nope - he had just smoked a cigarette. There's also an early case report of an MSA patient who had bouts of orthostatic hypotension after smoking:

ncbi.nlm.nih.gov/pubmed/577...

Re: episodic ataxia - it has to do with voltage gated ion channels (I suspect the same is true with sensitivities and MSA)

ncbi.nlm.nih.gov/pmc/articl...

I've had bouts of lower urinary tract symptoms since childhood, and this past year I've had symptoms similar to what my father experienced in the early days - though MSA is not hereditary, so I'm safe - right ;)? Sometimes exposure to second-hand smoke or coffee would bring them on or make them worse. Oddly enough, I remember a week in college when I took up smoking (everyone around me was smoking) and it did not seem to bother me - but thank goodness I quit after a week. Last summer I was having bouts of orthostatic hypotension and the worst one hit when I had been cleaning cat pans at a rescue shelter and had been breathing in ammonia fumes. The OH went away after I started taking MitoQ, but I now wear a half respirator when working at the shelter, since I find the fumes irritate my lungs (and the odor is not pleasant, either).

Last night I has problems swallowing (stuff going the wrong way and pain going down). I had had a light beer - hardly any alcohol and I was not even tipsy. Later I got a wicked sharp stabbing pain in my abdomen, but I've had those off and on throughout life, also.

I guess it is time to go to the doctor, finally. I really don't want to...

[Keycode]

Strangely my mum gave up drinking tea and coffee quite early on after first being diagnosed, not sure why I think she just said they made her feel ill. Wonder if the caffeine does affect some people's symptoms. She suddenly stopped liking a lot of foods as well especially broccoli. (We are not even allowed to talk about it 🤣)

[Rhyothemis in reply to Keycode]

Perhaps, though it is worth noting that the reports of people with Episodic Ataxia affected by coffee specifically refer to coffee, not caffeinated beverages generally. My lower urinary tract symptoms (LUTS) worsen regardless of whether the coffee is regular or decaf, and I've noticed noticed improved cognition and gut motility with both regular and decaf. Not sure why it would both improve my gut function and worsen my urinary problems (and it's too bad, since I could really use some help with the gut motility).

Now that I think about it, I've always assumed it was nicotine that affected my father, but it could have been some other component in cigarette smoke.