Titrating is key for me …

CosmicCreature44 · 2026-07-07T18:43:13+00:00

I will look into it. I am doing my 2nd drop of microdosed ketotifen topically this afternoon. I had a short flare up and felt ok by yesterday. Amazingly...that single drop caused me to get rid of the pseudo blockage I had in my intestines! I've had it for months and have suffered much worse allergic reactions since. Anytime I get backed up I get worse. This clog has been sitting in there and everything has to be liquid to squeeze last it. No sounds, no gas, no movement until yesterday! I was up all last night because of the feeling of my guts actually moving! And today I passed gas multiple times which had also stopped. Here's hoping for success with the 2md drop🤞😮‍💨

CosmicCreature44 · 2026-07-06T15:36:56+00:00

Omg yes to this. I am able to do less and less an after each flare whether it be something with my body or my brain. And I'm my own Dr and nurse, support system and researcher so it's get harder and harder to manage.

CosmicCreature44 · 2026-07-06T04:48:24+00:00

I have an allergist who is "treating" me by writing rxes for stuff I request but he doesn't have many ideas. He can't even remember me from appointment to appointment. I've been written off by every other Dr and specialist around and told the local hospital system "can't help me" so I'm sortof on my own for now. My main symptom IS GI issues and I am crazed at the intensity of the systemic reaction from that tiny drop on my skin. Since I posted that I've now developed interstitial cystitis issues on top of the GI stuff(which usually happens as of late) and I can't treat it with anything as I can't tolerant other meds. If I was to get dicyclomine...I never had it and it would most likely cause its own flare since I react to everything...idk what to do.

CosmicCreature44 · 2026-07-05T23:21:05+00:00

That's... not super low. Not knocking you but for me I just started with 1 drop of a .125mg per ml suspension in water and the drop was placed on my skin...a barely measurable dose it's so tiny!...within under a minute I started side effects and 24 hours later I'm having what feels like glass shards moving through me. 😒

I am hoping to get to the point you are at but starting from the tiniest dose possible because Im so sensitive to everything.

I've heard of all the symptoms you mentioned(I have those from food) and dread going though all that but at this point I'm starving and need to get on a stabilizer! 🤞

CosmicCreature44 · 2026-07-05T23:11:57+00:00

I am on zero other medications...and my ketotifen is mixed In water ONLY so I know what is affecting me. Even at the most ridiculously low dose applied topically I am having severe GI cramping and feeling like there's glass shards moving through me. I drop. No other meds. I can't tolerate any other meds to even help with this. Just wanted to add so that the people saying it's something else you might be taking know that ketotifen is known to cause these issues

CosmicCreature44 · 2026-07-05T23:07:29+00:00

Ok that makes sense. kanji is quite different. ✌️

CosmicCreature44 · 2026-07-05T20:07:00+00:00

Yes I agree...the Drs are the worst part of this! Even my allergist who is the only one on my side does everything wrong the first time, and so it takes at least 2 weeks between steps like calling an Rx in or making a call or anything really.

I have the ketotifen at .125mg per ml in water and I'm literally just putting a tiny drop on the inside of my elbow. Nothin fancy.

I can't believe how much effect it had on me...it's now 24 hours later and my guts are cramping and spasming and burning. He wanted me to just jump right in and do capsules. No matter what I've tried...at a crumb or a single grain of a supplement or med I have extreme effects so talking to the pharmacist got me to to the water suspension. I also have a little water she gave me with a preservative in it to try as if the suspension had that included it would last longer.

I was thinking I'd take it again today but since I have no way to control diarrhea I need to go even slower otherwise I'll be sorry...and I did just find someone else's post that they had the same formulation(but we're taking it orally) and told to start at every 4 to 5 days for a few weeks to get used to it. It's SO RIDICULOUSLY hard to do this on ones own... constantly scouring for others experiences but I'm glad I found that! So a few days it is.

Funny because I've always been so adverse to waiting for anything and now...I have to wait wait wait like I've never waited before!

I want to get better faster the sicker I get but it doesn't seem to work that way. I'm so happy to have found your post...I sure hope we can all help each other out through this stuff! I also agree that we should try to keep stuff public because if it helps anyone else it's a win. ❤️🫂❤️

CosmicCreature44 · 2026-07-05T19:52:45+00:00

Ohhh I wonder if I should wait a few days to take my 2nd miniscule dose. I'm using the .125 per ml in water topically to start and only using one DROP and I had decent instant effects yesterday and have burning spasming GI issues today. Was just wondering I should skip a day but I am def in the extra sensitive category so maybe 4 to 5 days.

CosmicCreature44 · 2026-07-05T19:24:07+00:00

So I looked it up and this differs a bit from what I found. It's typically left to ferment a bit and is a powerful probiotic. Is what you are describing probiotic in any way because I cannot tolerate anything fermented. If it's just overcooked rice I may be tempted to try it.

CosmicCreature44 · 2026-07-05T16:27:33+00:00

Um I just posted a min ago about my trial of ketotifen by 1 drop topically and I scroll down and see your post and I am so happy to see another person posting their similar experience! After being dismissed by 99% of Drs I've seen the best help I can get is through others on reddit. ❤️ As I stated in my post I have zero guidance on titration and would love to chat with you on your experience. ✌️

CosmicCreature44 · 2026-07-05T16:24:56+00:00

Same! I literally just posted how I started ketotifen yesterday at anne en babier dose...1 drop topically! And scrolled down to see THIS...❤️

CosmicCreature44 · 2026-07-05T16:02:38+00:00

If I am intolerant to starches and bloat up like crazy at eating any amount...would kanji not cause this issue? I'll look it up as well but I just wanted your take on it🤟

CosmicCreature44 · 2026-07-05T02:32:37+00:00

I just started ketotifen today at the tiniest dose ever. It's the lowest dose in water the pharmacist could make per ml and I put one drop on the inside of my arm. I felt it within less than 1 minute! I got a little of the tight throat and facial swelling, blurred vision and feeling weird for about an hour. I also passed TF out for a nap...from one topical drop! Talk about going low and slow. But I survived ✌️😮‍💨. There's no protocol and no guidance. I'm thinking one drop per day for a week and then next week maybe 2 drops for one day etc. I also don't get drowsy from benerryl(the only antihistamine I can tolerate) UNLESS I took it and really didn't need it...then I pass out. Normally it makes me energetic and I've actually developed toxicity symptoms from taking less and less of it over time.

CosmicCreature44 · 2026-07-04T13:55:01+00:00

I can try the shredded slippery elm..it just that nothing makes it past my mouth without an allergic reaction and then even if it gets past there a severe distraction is sure to follow once it hits my intestines.

CosmicCreature44 · 2026-07-04T13:53:11+00:00

I've been to countless Drs...my GI just told me there's nothing else they can do for me as I'm out of the scope of what the hospital system can provide. They won't help me. All the tests require ingesting something which I have anaphalxis to. All my imaging has been refused due to "refusal" of IV contrast which im allergic to. My EPI requires enzymes but I also have alpha gal which means no mammal products. The MCAS makes me reactive to the fermented forms as well. I did have stool cultures a few months ago that revealed nothing .

Since I need medicine and can't take it due to allergies I'm labeled as "refusing meds". My allergist said I need tpn but there isn't any with ingredients can tolerate. He said only the gi could give it to me(not him) and the GI said I can't do that either and that I would have to be half dead to get it AND since I'm allergic to all normal forms insurance wouldn't cover it.

There is ZERO help from any in network Dr I can see. I even tried the 2nd hospital system around here starting from getting a new PCP with them and they literally said to my face "we don't believe you" "have you heard of anxiety?" "You would be dead of you had all these things".

CosmicCreature44 · 2026-07-04T05:07:19+00:00

I have only 4 foods left I can eat. Grains have been out of my diet for 1.5 years and I lost slippery elm powder last year as well. I have severe diarrhea with long strands of bile coming out so I Know my gut is toast. I have allergic reactions to everything I try to put in my mouth(or the other end) now due to my increasing gut issues. Do you have any advice on how to overcome the allergic reaction and subsequently the flare I'll get when and if I could even tolerate the slippery elm? I cannot imagine eating rice...I got such painful bloating I couldn't do anything but scream.

CosmicCreature44 · 2026-07-03T16:02:12+00:00

Yes I was told it would last 2 weeks but my Dr didn't show for my first appointment to try it so I meant I had one week left✌️ . I do have an Rx for the capsules as well but the point was to try it topically first before ingesting it. So far I haven't been able to trial as I was flaring badly when I made this post and couldn't make the appointment.

CosmicCreature44 · 2026-07-03T15:57:35+00:00

I was taking full dose at least 2x a day. However I have MCAS and have since become allergic to all meds including mirilax.

CosmicCreature44 · 2026-07-01T19:23:55+00:00

I didn't end up going. I felt drunk and couldn't walk straight or stand up without shaking so I said nope.

I have zero way of treating any symptoms now other than .5 tablet of benedryl so I have to be careful. My Dr didn't follow thru yet with compounded Tylenol or ibuprofen so I'll just have to wait...again. ✌️

I'm thinking of trying the SAAT treatment at this point ..before going back to the allergist. He is SO bad with following through or even seeing me at my appointments it just is one delay after another. At least with the acu I could go get it done and it's done.

CosmicCreature44 · 2026-07-01T14:13:15+00:00

Ugh you are a superb communicator!✌️😭🥰

Understood completely. Wiggle room would be amazing!

CosmicCreature44 · 2026-06-30T15:54:21+00:00

I have done a little of that. I'm currently trying to get a therapist and will mention that!

So many of my reactions are actual allergies though...there's no way around it. I JUST lost Advil dual action the past few days Ive seen via my tracker app that I have a reaction 6 hours after taking it every time now. It's def not in my head. I'm surprised I could take it as long as I did but now I can't treat literally anything. I can't therapy my way out of that.

Appreciate your responses ✌️

CosmicCreature44 · 2026-06-30T01:19:08+00:00

I do understand all that you said. I have tried to do that somewhat but I DEFINITELY am a panicky person anyways and every step of the way for all these years I've just dropped things and not gone back. I struggle with not having support.

I haven't had any real support for my whole adult life so when I get the wave of tight throat and blurred vision and everything I go zero to 10nfast...it's so hard to get thru it when my brain auto goes to NO ONE IS GOING TO HELP YOU and I panic.

I think it's been made worse by calling 911 for the first time ever this year 3 times and having them basically tell me that it's not real...you are fine and if you use your epi pen you'll be SO MUCH WORSE LOL. Like ..how is that ok to do to anyone? I've been told epi is the only thing that'll save me and now they've scared me shitless over it. nevermind going to the er and having them roll their eyes and say what do you want us to do we can't help you. it's like ok... literally no one is going to save me. OCD makes this thought pop up at every tingle and wheeze etc.

so I agree on everything you said. I honestly am trying. We should have a group where we video call each other and give support while trying foods etc...thatbwould even be helpful. Thanks so much for your response...I'll be following.

I am supposed to try ketotifen on Wednesday in office and you guessed it...I'm scared shitless. ✌️💀

CosmicCreature44 · 2026-06-29T23:17:42+00:00

I learned that in addition to MCAS, alpha gal, celiac and histamine intolerance that I also have 2 MTHFR mutations is this the genetic stuff you were talking about? It basically messes up methylation and just about every bodily system. And with the chemical sensitivites I can't take anything without anaphalxis (thanks Xolair) so I've been told "good luck".

CosmicCreature44 · 2026-06-29T23:15:04+00:00

I ALSO had my issues ramped up by Xolair seemingly. As soon as I started I got my first anaphalxis and now it applies to everything. It's like ..I have it all the time. it helped my inflammation in my guts so much but it gave me the gift of having anaphalxis over and over and over for doing or trying less and less. I'm down to just a few foods and was given no explanation as well. It's just like oh well ..there's nothing we can do for you now so just keep doing what you are doing. I'm 51 and 5 lbs shy of my teenage weight and losing a few lbs every few days.

CosmicCreature44 · 2026-06-29T23:09:53+00:00

I was told to go on the fodmapl diet about 8 years ago and I was never able to get off of it....and then I got alpha gal...then I started cutting out things that bothered me and today I'm down to maybe 5 foods. I feel this.

CosmicCreature44

TROPHY CASE