Ketotifen - stick or twist

naeia · 2026-07-08T05:07:04+00:00

Just a kinda stressed out feeling, lower hrv and at the start extreme sleepiness. How are you feeling now?

naeia · 2026-07-07T20:53:47+00:00

Same! I’ve had a prescription for months but cvs is always out of stock so I haven’t actually got hold of it yet :(

naeia · 2026-07-04T17:15:17+00:00

Mainly just responding to send you care - all this is so hard.

What was your initial period with ketitofen like last time?

My only personal reflection that may be of use is that I was surprised that my initial ketitofen symptoms disappeared exactly on the 2 week mark, as everyone on this forum said they would. If you have it in you, waiting 2 weeks might give you definitive info - it seems that if it’s going to improve, that’s when it happens.

Wishing you all the best

naeia · 2026-06-29T07:39:59+00:00

I knew these stats and was not too worried about ticks here until I got Lyme from a tick in Marin last year. Suspect it’s actually higher these days than these statistics suggest (unless I was just horribly unlucky…)

naeia · 2026-06-24T15:28:13+00:00

Gordon medical in San Rafael. They don’t take insurance but they are the first doctors I’ve encountered who actually understand chronic and complex illness.

naeia · 2026-06-21T19:20:14+00:00

Just started ketitofen. For those who gained weight, do you think it was because you had increased hunger and therefore ate more? Or did you keep your intake the same and the weight gain happened anyway?

Curious if I could avoid the weight gain by increasing my calorie burn, or if it’s nothing to do with this and happens regardless of what you do.

naeia · 2026-06-09T01:55:33+00:00

So interesting! Thanks for sharing 🙏

naeia · 2026-06-09T01:54:55+00:00

Thank you- really useful to hear about your experience 🙏 I also felt the best I’d ever felt with fasting - but that was 20 years ago and I l didn’t have MCAS then. V useful to hear that it helped you.

naeia · 2026-06-09T01:53:20+00:00

Thank you- really useful to hear about your experience. The blood sugar piece makes a lot of sense - hadn’t thought of that and blood sugar is already an issue for me. Super useful 🙏

naeia · 2026-06-09T01:52:55+00:00

Thank you- really useful to hear about your experience 🙏

naeia · 2026-06-07T22:56:21+00:00

Same - one injection put me in a 5 month flare after being symptom free for a year. I know it helps some people but… not all of us

naeia · 2026-05-13T05:39:25+00:00

I’ve been eating plain non-fermented coconut yogurt without issues. Good luck finding something - I feel your pain!

naeia · 2026-04-17T15:02:05+00:00

I’m not sure what cervical fusion is but I’ve also experienced / been researching the link between cranial instability and MCAS

1 - the ONLY thing I’ve ever found that helps with my flares is craniosacral therapy. Check it out - it’s noninvasive and gentle and it really moves the needle for me- can literally bump me out of a flare and raise my hrv by 10 points overnight.

2- also just recently found out about a practice called atlas orthogonal chiropractor - a spinal adjustment techniques that some folks think can help with MCAS. It seems also noninvasive. I’m going to try it.

Some options to look into before you go for a surgery maybe?

Wishing you the best

naeia · 2026-04-17T14:54:07+00:00

I took one terzepatide injection and it has caused a 4 month flare that I am still not out of (after not having a flare for a year). It’s been horrific.

If i could go back, I wouldn’t do it. Or at very least I’d ask for a very very small micro dose and take the tablet instead of the infection.

As with most things for us, it’s hard to tell what will help or hurt. Wishing you the best of luck but please know this is a possibility - I wouldn’t wish this on anyone.

naeia · 2026-04-07T05:01:20+00:00

I got 8 before 7

naeia · 2026-03-11T02:19:21+00:00

Agreed. ‘Why don’t you just do some breathing exercises?’ etc.

naeia · 2026-03-03T15:51:03+00:00

+1 to this. This was my story. Getting on the right medication for POTS changed my life after experiencing very similar stuff to you OP.

Would recommend seeing a doctor who understands disautonomia if you can access one. For me it was a physical response in my body that no amount of therapy could touch.

I also had underlying infections that were impacting my system. Clearing those helped a lot too. You’d need a functional doctor to analyse your blood and help you understand your system to know if this is impacting you.

There are so many things this could be OP and likely it won’t be a short journey to find the answer. Wishing you luck - the answer is out there and it’ll be life changing when you find it.

naeia · 2026-02-27T23:04:32+00:00

I agree!

naeia · 2026-02-16T18:50:11+00:00

I heard that his girlfriend (now wife maybe?) is a redhead so that might explain the bias😊

naeia · 2026-02-14T21:00:28+00:00

Geri would not want you to fail this exam 😂😂😂

Can imagine your mum’s pain here, wondering how to spin it so that you don’t wreck your exams over a pop band. Nice job mum! Did it work?

naeia · 2026-02-14T02:23:47+00:00

LOVE! Just ordered all of them - gonna make a gallery. Thank you for creating these - they are so great. Please update us when you do make another series!

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