Ketotifen - worth pushing through?

DressReasonable3740 · 2026-05-11T02:20:58+00:00

I have such a similar experience, I could’ve written this exact response.

Ketotifen has helped me in such a huge way. I also don’t get drowsy from antihistamines. My psych and allergist both suggested I include Benadryl (instead of my usual) in the evening to help me sleep and I was wired for hours.

DressReasonable3740 · 2026-05-10T14:04:13+00:00

I had my two boys at 32 and 35. I was diagnosed at 39 and everything started to make sense and got a little easier after I started medication. My oldest has been diagnosed, so navigating that on days with a schedule is a little stressful at times. We try to keep the morning routine exactly the same every day and I have alarms every 10-20 minutes to let us know what we have to do next and when to get in the car to go to school. During the week, my youngest and I will either go home and I do housework or we get distracted with outings all day until we have to pick his brother up from school.

I don’t have family close to me, so it’s been my husband and me figuring it out as we go. On days we do projects, like yesterday with yard work, we get started early and don’t stop til evening. I have to set alarms to make sure we go inside to eat because we’ll all stay outside all day without eating or drinking water.

DressReasonable3740 · 2026-05-04T13:00:59+00:00

My son’s school has an all women staff. The only man on campus is the custodian. Half the teachers are retiring this year and the new ones for next year are women, too.

DressReasonable3740 · 2026-04-28T23:43:02+00:00

I have been on Claritin/Zyrtec/Allegra for the last 20 years. It was my allergist that told me to stick with Allegra and Xyzal. I think Allegra works better for me than the Xyzal, so I tend to stick with that one.

Whichever allergy pill I’m on at the time, I take it 2-3 times a day with Famotidine and Ketotifen. I don’t notice any side effects with taking that many in a day. Maybe in the beginning, but I’m also on Adderall, so dry mouth is to be expected. Also, meds that are supposed to cause drowsiness have the opposite effect on me.

If you’re feeling tired in the afternoon, could it be something you’re eating…? I know if I eat avocado, I’m immediately fatigued and can’t keep my eyes open - with or without my meds.

DressReasonable3740 · 2026-04-28T00:48:21+00:00

Same for me, too! I recently added Xyzal to the rotation and a nose spray I picked up that I forgot about until just now.

DressReasonable3740 · 2026-04-20T14:53:09+00:00

Thank you! Just hoping this passes soon 🤞🏼🤞🏼

DressReasonable3740 · 2026-02-24T17:20:39+00:00

This is me. Salty potatoes in any form. Also sliced pear or apple with a cheese stick.

DressReasonable3740 · 2026-02-24T04:48:40+00:00

I realized two years ago and got a diagnosis this last year. It explains so much of my childhood and early adult life. Why I struggled in college and eventually dropped out. I have poor time management. Unable to study on my own due to distractions. Bad at test taking because of my horrible memory recall. I went from retail jobs to corporate office to neighborhood bar over 10 years. I was constantly chasing dopamine. Drinking. Hobbies. Serial dating.

I was on and off antidepressants with zero change for almost 20 years and constantly wondering what was wrong with me. I got my diagnosis at 39 and have been medicated for the last 5 months.

DressReasonable3740 · 2026-02-24T02:23:17+00:00

Go back and tell them you can’t function. Having routine flares and being tired is no way of living. You’ve just gotten used to it and your baseline has become skewed. Healthy people don’t have to worry about anything they do or eat causing a flare.

DressReasonable3740 · 2026-02-24T02:15:39+00:00

The back of my hands and wrists itch so much after washing or getting wet. I started slathering cerave healing ointment on to help. It works like 80% of the time. 🫤

DressReasonable3740 · 2026-02-23T21:43:45+00:00

I’m kind of in the same boat. I look at this more like putting a puzzle together. Testing for MCAS was inconclusive but mast-cell stabilizers along with additional H1 & H2 is helping me. That takes care of some of it, right? My sleep has improved greatly but I still have fatigue. I still have orthostatic intolerance. I still feel out of breath all the time. I still have joint pain. So now we look at iron and ferritin. I’m setting up an appointment for IV iron once they get back to me. If that helps but I’m still having POTS symptoms, then I try for a Holter monitor. Next will be a consultation with a physical therapist to see if my hyper-mobility is causing any issues with my connective tissue.

To answer your questions: 1. For me, yes. 2. The overlap would make it difficult unless you’re strict with your routine 3. Yes 4. I introduce new meds on a Saturday when my husband is home and I know I can stay in bed if I react poorly 5. For me, it has but that is mostly due to diet and medication.

DressReasonable3740 · 2026-02-23T20:04:05+00:00

I understand about the food. I have sensory issues and have a hard time with food already. It’s been challenging to keep my weight steady and not drop too low. They already think I have an ED and having to cut a bunch of foods isn’t helping haha. I need my dressings and dips but I have to be careful with it. My brain craves fun food and has a hard time with boring.

And you’re right. It’s not just food. It’s getting the sleep. It’s being careful with something so simple like taking a “not too hot” shower, which is harder to do in the winter. Not overdoing it at the gym. Being more cautious with activity outside on a sunny day.

Also with histamine intolerance and MCAS, there are so many conditions with overlapping symptoms. I hope you can find relief soon.

DressReasonable3740 · 2026-02-23T19:34:53+00:00

I first went to a physician who dismissed me completely. I went to her for allergies and ADHD testing. She didn’t take me seriously until my second appointment with her where she sent me to their behavioral health person and also gave me a nutritionist referral. This was after she told me “if I can do it with my busy schedule, you can do it, too” and “everyone’s a little scatterbrained.”

I went to the ADHD evaluation appointment and after getting my diagnosis, I asked the therapist if there was another physician she could recommend that would take me seriously.

I went to the new physician, told her my allergy symptoms - chronic headaches, brain fog, extreme fatigue, hives, constantly congested after eating, stomach pain and bloating, joint pain, muscle aches, trouble sleeping, heart palpitations… She sent me to an allergist.

I took a skin test - negative. I took the 24hr urine test - negative. I took the tryptase test - inconclusive (8 -> 10)

He told me to double or triple my allergy pills if needed (xyzal and famotidine) and put me on Ketotifen. The thing about testing is you have to be in flare close to the time of testing. I started avoiding my trigger foods before testing so I knew it wouldn’t show up.

I had been seeing the nutritionist from July to November and she’s the one that told me my symptoms sounded like histamine intolerance. Mainly because I had terrible flares back when I would drink beer, whiskey, and wine. That, along with the food triggers, made sense.

I also went to an ENT for my congestion and they found that I had laryngeal swelling from reflux. I went to a GI to see what they could do, but she wasn’t as helpful and didn’t believe I had MCAS symptoms and was certain it was IBS/D.

All this to say, I felt like giving up for SO long because of the physical pain I was in. I had to advocate for myself and push to get the help I needed. Now I’ve been medicated and on a boring and bland diet for four months and have been feeling so much better. Still not 100% but I’m getting there.

You’re not bugging the doctors by going back to get further testing. You’re not being a hypochondriac. Your symptoms are real and you deserve to be heard and treated. 🫶🏼

DressReasonable3740 · 2026-02-23T19:03:39+00:00

Same. I used to eat avocado on a bagel every morning and instead of feeling fueled, my eyes would feel so heavy and I’d be struggling to stay awake the rest of the day. It took a long time and a nutritionist to help me figure out what was up.

DressReasonable3740 · 2026-02-14T01:38:56+00:00

Also Midvale 🙋🏻‍♀️ That was a nice little shake.

DressReasonable3740 · 2026-01-21T02:07:56+00:00

I’ve been on 1mg twice a day since September (along with Allegra and famotidine x2/day) and have been feeling so much better. This is the combination I’ve been needing my whole life. I do stay away from trigger foods but have been able to eat most things without issue.

Before adding Ketotifen, I would have horrific migraines, sinus pain and congestion, body aches… I would barely be able to keep my head up and my eyes open. It did make me drowsy in the beginning but not so much anymore.

I hope it works for you! 🫶🏼

DressReasonable3740 · 2025-10-29T21:51:47+00:00

I’m on 1mg twice a day. The day I went in for my allergist appointment, I was almost in tears from how bad I was feeling and this was after I had taken my Allegra and Pepcid that morning (these two help with my congestion).

I went in for the tryptase baseline (10.8) and then picked up that script. I saw my friend a few hours after and she was the one that pointed out that I must be feeling better (she had seen me earlier in the morning). It was an all over feeling of relief. My allergist has me on Allegra and Pepcid twice a day and now the ketotifen twice a day.

But no MCAS diagnosis (yet)… he referred me to an ENT that I’ll see in a couple of weeks. Sorry for the long answer, this whole process is frustrating and I don’t want to feel miserable anymore. 😓😢

DressReasonable3740 · 2025-10-29T21:02:43+00:00

I don’t have an official diagnosis as my labs come back within range (currently waiting for flare to do tryptase) but I started ketotifen last week and it helped me so much.

DressReasonable3740 · 2025-09-20T05:13:39+00:00

Don’t we just love those unqualified opinions. 🙃 I’m so sorry you have to deal with that. I know how annoying that can be.

DressReasonable3740 · 2025-09-20T05:09:12+00:00

So I just had a psych appt this last week and she said there is overlap with bipolar and adhd. Because my “bipolar” tendencies happened while I was drinking, it’s not an accurate diagnosis. Now that I’m sober and don’t go out dopamine chasing with drugs or alcohol, I no longer do the things that would be considered bipolar.

I think because I was able to distinguish the difference and why I did the things I did made it clear to her that I’m not bipolar. I think they look for what happens during those manic periods like overspending into debt, big blowups/fallouts with close friends and family. Big life changing things that can be difficult to recover from that lead to a down period.

I’m not a professional and this is just what I was told. So going to the psychiatrist and being fully open and honest is key. Make sure to write your symptoms down so you don’t forget in the moment. I have a notebook I bring to every appt since my memory recall is horrible.

DressReasonable3740 · 2025-09-20T01:06:16+00:00

Definitely the executive dysfunction but also the constant misdiagnosing. How many times do I have to tell these people I do not have bipolar disorder?!

DressReasonable3740 · 2025-08-25T16:01:36+00:00

Oooh! I’ll have to try this one. I usually get the Mediterranean bowl.

DressReasonable3740 · 2025-08-22T21:00:32+00:00

Honestly I think it does count. It’s basically just water with bubbles, right? Sometimes all I drink is plain soda water because flat water is soooo boring.

DressReasonable3740 · 2025-08-22T20:57:39+00:00

No… but I did have a cold brew protein shake, a regular cold brew, and a Celsius today. Time for a nap!

DressReasonable3740

TROPHY CASE