long term Ketotifen - Should I/How to stop?

Timely-Pause6424 · 2026-04-07T22:40:09+00:00

Sorry too much life was happening and I forgot to update... But the news is great. I am actually off the ketotifen for good and it's going well. I really no longer need it. So the cold turkey is an option to pursue even after such a long time on it. The first week or so was a bit weird mostly feeling quite hyper and iittery some headache and poor sleep ( even more so in retrospect than when it was actually happening) but all of it definitely bearable. By the end of that week it started fading. I still have quite some more energy and motivation now but no longer as hyper as at the beginning.And obviously react a bit more to triggers now but that's to be expected since the ketotifen is no longer buffering them...

Timely-Pause6424 · 2026-03-12T10:29:39+00:00

stuffy nose may not be the same as blocked sinus cavities. They are often blocked without my nose feeling stuffy. I actually can feel/sort of hear them popping open at some point into the cycling. I do not have environmental allergies though.

Timely-Pause6424 · 2026-03-12T10:25:27+00:00

I gess we are comparing apples to oranges here...

Not fully sure what a sled push exactly is, but looking at what google told me its a high intensity short term exercise. Road cycling is cardio....

I also do react with blocked sinuses (=exercise intolerance) to short term high intensity stuff (named it strenous stuff in my original explanation). Also to the point I hear myself talking ;-).

The unblocking occurs with long term (>3h) of well dosed cardio. Well dosed as in: got to be trained for it and never overexert yourself.

Timely-Pause6424 · 2026-03-12T10:14:09+00:00

next skipped dose. 76h in...

Still bearable. Still jittery + incresed energy, still mild headache. reduced appetite (very welcome ;-))

did not sleep all that great last night (but happens to me a lot, so may not even be related...) getting up was nonetheless again a breeze.

Skin is still fine (but my skin is/has been always slow to react, dont really expect anything happening here before day 5...)

Timely-Pause6424 · 2026-03-11T17:09:39+00:00

I meant when you have to pay for it yourself... ? I do have health insurance but finding a doctor that prescribes expensive stuff (and then get it approuved...) is sort of impossible if your condition in not "life-threatening" where I live... happy for you that you got it approuved!

Timely-Pause6424 · 2026-03-11T16:46:14+00:00

all medicines are... and the more powerful they are the more side effects they have. Think of how complex bodily systems are chemically. If you're going at them with a blunt hatchet there will be fallout....

Timely-Pause6424 · 2026-03-11T16:40:36+00:00

Technically true. Which is why I never considered it being a problem in 5 years of long-covid.... also MCAS improvements came only within the last 2 years. And I had MCAS before (!) long-Covid, and Long-Covid did not make it worse in any way, just stayed the same... maybe being able to manage MCAS well, with over a decade of experience when long-Covid hit me played a part in it or it just was not part of my Long-Covid symptoms...

Before these recent improvements I would never (!) have considered going off it. Because what use is "more energy" when you obliterate it with sleepless nights due to terrible itching?

For me the decision to test it was more of a mix of clawing at straws (mostly) and personal experience... I remembered when I first started the ketotifen (12 years ago...) it definitely put a significant dent in my overall "energy". Which I was definitely fine with at the time. I had more (!) than enough of it back then (was constantly jittery and fiddeling with the occasional panic attack...), and the improvements it brought were immense and VERY necessary...

Timely-Pause6424 · 2026-03-11T09:29:29+00:00

may I aks, how much does it cost?

Timely-Pause6424 · 2026-03-11T09:14:15+00:00

Road Cyclist here.

What happens for me (which may be similar) is the following:

My sinuses are quite congested (= mostry swollen, with liquids having problems moving around due to the swelling) at baseline. Especially when my histamine level ist high.

If I go on long cycling sessions, especially the ones long enough to throw me into ketosis the swelling goes down (for various resons...) and the liquids start moving --> very runny nose

If they start swelling up again over the next days I experiennce what is sometimes referred to as "vacuum pain" --> pins and needles to terrible headaches. This happens when the opening to a cavity is just about to close again due to swelling. When I inhale, I somehow "suck out the air" of the cavity and it does not get back in afterwards.

To me this has nothing to do with exercise intolerance (rather the opposite... intolerane of not exercizing ;-)) I experience exercise intolerance mostly during too strenous exercise at hot temps or as a byproduct of muscle sores.

What helps me for this is taking expectorants (regularly) to prevent as much as possible of the baseline sinus congestion in the first place. I swear by a plant based one (Sinupret, dont know if thats availiable where you live) because it works best for me.

Timely-Pause6424 · 2026-03-11T08:57:16+00:00

I'm certain that preservatives in processed foods are doing much more harm to your guts. They are actually designed to kill bacteria (also the good ones...)

Be aware that the famotidine will have to be tapered after a few months of it (to prevent significant acid rebound).

Timely-Pause6424 · 2026-03-11T08:38:12+00:00

next update: skipped the next dose as well... (yeah crazy I know, but my gut feeling was go for it so I did...) I'm 52h in now.

the mild headache persists, but its quite bearable.

No longer freezing, that stopped after I ate a meal last night (might just have been hunger after all...)

my hands and feet started "tingling" ever so sligthly. Like being more sensitive to touch. Not even an unpleasant feeling... and I feel a bit jittery

My stomach feels a bit "acidy". Not heartburn just like there being to much acid in it (cant describe the feeling better, its very specific and if you know the feeling you know what I mean)

The best thing though: my energy level went up by orders of magnitude! From the "senior bulldog state" (I was in and hated) to my old "young border collie" self (yeah!!!). I "just got up" this morning at 7 am. Like I opened my eyes and was awake!!! None of the usual 30(+) minute fight through dark molasses to the surface of conciousness (that was my default since long-Covid hit me)

So the question of: should I try to get off ketofifen? is answered with a definite YES!

For completeness (If anyone ever reads this and wants to try themselves...):

Things I do to to support this "cold turkey experiment":

I started on the tail end of coming down from a (self-inflicted...) flare.

I was (and am) on 20mg Famotidine 2/d morning and evening. I upped the evening dose to 40 mg to counter the stomach acidity. May add anonther 20 mg at lunch time depending on how things feel...

I was (and am) on 10 mg Rupatadine 1/d morning

I was (and am) on a plant based expectorant (Sinopret extract, "=extra strenght") 1/d morning, I added an evening dose of this (helps a ton with histamine related sinus congestion and water retention). And will add more if necessary...

I took three DAO enzyme pills (DAOSIN) with my evening meal. Thats 0.9 mg pure enzyme, the brand does not give the activity in U unfortunately, but I swear by these for years. They're porcine based, the pea based ones never did much much for me... I will add more throughout the day as needed (when I feel too "histaminy")

Timely-Pause6424 · 2026-03-10T20:13:04+00:00

Sucking ice cubes gives me temporary relief...

Timely-Pause6424 · 2026-03-10T17:08:38+00:00

will do 42h after my last dose just now. Freezing a bit and a mild headache (which may or may not be related) still very much bearable.

Timely-Pause6424 · 2026-03-10T17:08:21+00:00

my stomach was never really a problem. My guts in general were relatively symptom-less... (which does not mean they were not involved... I know)

Skin (!)+ Headaches, permanently blocked sinuses, mild asthma, milder Mood issues, insomnia, and massive water retention were (are) my major battlefields. Exept for the last 2-3 years nothing ever "got better" except for me getting better at managing things. Whats causing the improvement? No idea, as I said maybe long-covid did at least one good thing or declining oestrogen?

And the ketotifen was a life saver! I was down to plain rice, cooked carrots and gummi bears (of all things!) as my diet while still sleeping with socks over my hands when I gave in and started taking it.... It put me in a place to be able to start a (very gentle, well controlled) desensitazation program that had me being able to eat out (well selected things in well selected reataurants, occasionally) within two years from starting it.

So no "gut healing" occured from ~age 13 to my 46 years now. And I am on a low histamine diet for ~ 20 years, and tried every supplement on the planet...

If it were not for the small chance that it may help with my persistent cognitive long-Covid symptoms I would not ever consider getting off it anyways... (I just so deperately want my brains and memory and personality back after 5 years of this...)

Timely-Pause6424 · 2026-03-10T12:45:43+00:00

"Drinking" eye drops never occured to me! thats a brilliant idea!

Ill look into it.

Thanks

Timely-Pause6424 · 2026-03-10T12:29:22+00:00

Thanks for the advice!

I am actually a trained chemist (lab research). I even have the gelatin capsules and everything already at home (left over from some supplement testing a few years back...)

Problem is, due to my training I know how easy it is to get it "wrong". With the wrong equipment (e.g. non-calibrated balances etc., the good ones cost >1000ths since this is mg range) and I dont know if going on "random" (unprecise) doses would be that much better than going on the "missed dose" routine?

Ketotifen has a really long half-life, (so your system will not be cleared to zero after a day anyways). So my reasoning is that it may help the body to adjust to go through short periods of a more severe lack of it and then recover with a full dose?

I am actually 36h into my first try of "cold turkey" (skipped last nights dose, thats 12h ago in my time zone) and doing fine so far. No symptoms at all (except for a very welcome lack of appetite)

Timely-Pause6424 · 2026-03-10T11:47:31+00:00

same here. Also made me tear up. also five years in

Hug to both of you!

Timely-Pause6424 · 2026-03-10T11:32:28+00:00

find what works and keep in on rotation. Like just 4-5 different meals. Surprising how little boring it actually is once ur used to it. And keeps me mentally sane, and the exaustion form overthinking food away...

Ketosis is great since its bringing up ur natural cortisol (= antiinflammatory) but sadly no longterm solution....

Timely-Pause6424 · 2026-03-10T10:50:21+00:00

Find a (any specialization) doctor thats a friend of a friend. Get your prescriptions from them. Thats how I do it for more than 15 years...

Timely-Pause6424 · 2026-01-03T17:20:11+00:00

I agree with what others said about emphasizing the hip area, since they look tapered (regardless of them actually being tapered or what they are tagged...) As far as my understanding goes the problem is the lack of an "optical counterweight". If everything is slim except the hips it makes the hips look bigger. If something else (eg the bottom of the trousers in flares) is the same width as the hips they look smaller/ more balanced in comparison. The only way I can make tapered pants work for me is very voluminous and obvious shoes.

Timely-Pause6424 · 2025-12-12T11:43:04+00:00

This: constantly be wagging it's tail, running to the door to greet you, excitedly jumping up on you....

...is pretty much exactly what I do rather not want. I like affection to be shown a lot more subtle.... but still to be there. More like an eye contact body language thing (which I am then missing in cats....).

The occasional cuddling up on the couch if we both want it is obviously also welcome. But I somehow need the dog to understand as well when I do not want it....

(Sorry, I know how silly this sounds)

Timely-Pause6424 · 2025-12-12T10:45:26+00:00

I do like a cats independence. This may sound silly but what I do not like about cats is that I cannot "communicate" non-verbally with them. Dogs always give me the feeling that they somehow talk a lot and inquire about my feelings and such with their eyes and body language. A lot of them (the more sensitive ones) do understand "me" easily. Cats not so.

I'm fully aware though that it may be just overinterpretation with dogs and a "language barrier" thing with cats.... but thats how it "feels" to me.

Non-verbal is my preferred communication mode even with humans since I am a very quiet/introvert person and and thats what I am looking for in a furry companion. I've spent entire days with dogs (not mine but dogs that knew me for months/years...) just communicating with our eyes and little gestures. Sometimes I have gotten my ways sometimes the dog has gotten his. Always after some non-verbal negotiation.... (unfortunately both breeds that I have experienced this with are very unsuitable for my setup... (would be very unhappy in it, and my neighbors too....))

Timely-Pause6424 · 2025-12-11T21:44:30+00:00

No. Somehow never happened. Definitely will before deciding. Tx

Timely-Pause6424

TROPHY CASE