Simon Wessely on Multiple Chemical Sensitivity (MCS): "related to expectations and beliefs"

[frozenborderline]

I am glad you said that, because I was beginning to think I was a bit of pansy not being able to tolerate ketotifen very well.

The paper did say 6 mg twice daily for IBS though:


But even when I read that paper, I did think that 6 mg twice daily was a pretty high dose, because most other sources I have seen specify ketotifen doses of 1 mg twice daily. I'd be happy if I can get to 0.5 mg once daily.


Since @hixxy points out that ketotifen is calcium channel blocker, this I guess may be the reason why ketotifen requires slow up-titration, as nimodipine, another calcium channel blocker used in ME/CFS, also has to be carefully up-titrated.

Wow, on the Wikipedia for ketotifen it doesn’t mention it being a calcium channel blocker, and no doctor or patient that has recommended it has mentioned that, despite the fact that calcium channel bloackade can have significant side effects. Do you think this is a possible reason to consider other mcas drugs like rupatadine over ketotifen or is the effect minimal?

 

[Hip]

Do you think this is a possible reason to consider other mcas drugs like rupatadine over ketotifen or is the effect minimal?

Hard to say if calcium channel blocking is the reason ketotifen requires slow up titration.

 

[frozenborderline]

Hard to say if calcium channel blocking is the reason ketotifen requires slow up titration.

People often cite the drowsiness caused by ketotifen as a reason for it being so difficult to tolerate, but it seems that it’s affinity for h1 receptors is less strong than other old generation drowsy antihistamines, and so I wonder if the difficulty tolerating it is just due to calcium channel blocking. Since anticholinergic activity of ketotifen is low and not likely to explain the drowsiness

 

[Hip]

and so I wonder if the difficulty tolerating it is just due to calcium channel blocking.

I did actually half heartedly try the nimodipine protocol a while ago (nimodipine is a calcium channel blocker sometimes beneficial in ME/CFS), and I noticed no increased fatigue on that, at nimodipine doses of 30 mg daily.

 

[Rufous McKinney]

would remain in my brain for up to 24 hours after no one else could smell them any more.

Last summer when things got particularly acutely bad here: I was hallucinating smells. A smell trigger (dinner, from downstairs wafting upstairs)...would stimulate my nose to report: some horrible smell. It was mis-smelling these smells. It was food, but didn't smell like food. This happened repeatedly for several weeks. I have smells lodge and it takes a very long time to clear. Just like Gingergirl said.

 

[Gingergrrl]

I have smells lodge and it takes a very long time to clear. Just like Gingergirl said.

It was very interesting to re-read this thread from two years ago. I no longer have any problems with smells but it was MADDENING when I did and it really affected my life in 2015 & 2016. I am hoping that you will find something to alleviate this issue.

Wow, on the Wikipedia for ketotifen it doesn’t mention it being a calcium channel blocker, and no doctor or patient that has recommended it has mentioned that, despite the fact that calcium channel bloackade can have significant side effects. Do you think this is a possible reason to consider other mcas drugs like rupatadine over ketotifen or is the effect minimal?

@debored13 Do you know if it was ever determined if Ketotifen is a calcium channel blocker? I am still very curious about this issue since I am not supposed to take calcium channel blockers (and do not do well with them) and yet Ketotifen is still one of the meds that I would put in the "miracle" category for me. For about two years, I was taking 4 mg per day, then we cut it down to 2 mg per day, and now I take it (and all my MCAS meds) every other day (unless I am having an infusion or eating in a new restaurant and need to be extra safe).

When I asked my MCAS doctor (a couple years ago), he said that Ketotifen is an H1 blocker and mast cell stabilizer (and not a calcium channel blocker). So I am still baffled on this b/c a few patients (non doctors) have told me that it is. Re: the second part of your question, I have never tried Rupatadine and do not think it is available in the US. But I never had any side effects from Ketotifen.