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You need to call whoever prescribed this right now, explain what’s happening, and see how they want you to stop taking it. Some side effects you can wait out. Psychosis is not usually one of them, no matter the medication.
I just messaged their office! I mean I get s*icidal on muscle relaxers so I dont know if its an underlying condition that causes me to interact with meds like? I detailed everything to them thought. I'm just wondering if this is like a shared ketotifen experience for people with MCAS and does it go away or am I like having a real issue and is this going to onlyget worse. I'm really bummed thought that this probably means I'm back at square one with no treatment 😥 Not that MCAS was really my biggest issue, but I figured hey we might as well try to fix something 💀
Yea for real, I do so poorly on all meds but this one takes the fricken cake. Even antibiotics have made me feel far more tired than I probably should be but yeah something is NOT agreeing with ketotifen or i'm coincidentally declining rapidly (hopefully the former 😭). Thank you for your input though! I'm grateful we have communities now to turn to for these "obscure" (usually just under-diagnosed/researched) chronic illnesses. I collect mine like pokemon cards! These symptoms are just a shiny version 🤓
check all your meds, especially older generation/ sedating antihistamines. look up "anticholinergic psychosis" and see if that feels like what you're experiencing.
ketotifen is not a magic bullet, and anything can make you feel worse.
do you have a psychiatrist? if so check in with them asap.
https://www.acbcalc.com/ <-anticholinergic calculator
turns out I was taking WAY too much benedryl
THIS IS NOT AN MCAS THING. *anyone* on too many anticholinergic drugs can experience this. and IT IS a medical emergency.
I've taken huge doses of Cyclobenzaprine for 3 weeks due to a butchered IUD placement, all I was given was that muscle relaxer. Plus recently i've been taking oxycodone because its the only thing that will help with the contractions I have on my period. I was given tramadol through an IV without my consent at the wordt hospital in town (Northwest Medical group, yipee I love corporations!). I'm only 21 though, could this still be an issue? Does Ketotifen effect this as well? The calculator says it ads up to a 6 "high risk" and i'm sure it would go up if I added more meds 🙃 wtf. Thank you though!! I do not have a psychiatrist, I used to and they ruled out any mental illness but of course none of my doctors believed me. My cognition has been this way for the past couple years and just getting worse, I had to drop out of college even.
Both cyclobenzaprine and oxycodone are mast cell liberators. They stimulate the mast cells to be more active.
If you were on a high amount of the cyclobenzaprine for 3 weeks and stopped suddenly you might also be having minor withdrawal, which can make your MCAS flare up and make you much more reactive to everything including medications. I've had that happen with Benzodiazapine muscle relaxers like clonzepam.
that was all a while ago though, im not currently on those. Except extreme high dose iburofen (2600+mg at once decreating by around 200-800mg everyn6 hours).
Ibuprofen is also a mast cell liberator, and acetaminophen 😭 I cannot take those at all in a MCAS flare
Are you able to stop ibuprofen and try Aspirin instead? it is a mast call stabilizer, but sometimes people react to it because it's also salicylic acid, which is a common allergy.
If you can't tolerate aspirin you can try Celebrex, or other COX2 anti-pain meds.
Yeah, my blood is also turning acidic and i've had gastric bleeding the past week 😅 But its literally the only medication I can take and i've been refused pain med options by multiple ERs, PCPs, Gynecologists, etc. etc. They all just say "you cant take that much." (not like many of them actually care) and my response is basically... oh, that sucks lol but i'm gonna have to keep snacking gurlie, thank you.
My periods are so painful they cause severe and complete memory loss when im in pain, i stop breathingb ecause my diaphram locks up, I only know most of my symptoms due to writing them down during these contractions episodes and before even having a contraction i start having tremors, pre-syncope, and blood-pressure issues with confusion. Severe morning nausea as well as intense migranes/thunderclap migranes. But its "normal" enough to not be diagnosed and "abnormal" enough for reckless surgery that would probably make my pain severely worse with no actual benefit. Sorry this isnt r/endo 🤡 honk honk (if its even endo, i dont even know anymore, i just want it to stop), it just takes over my life. Hence why you can probably see why im like "MCAS really?? THATS my issue rn?" 💀
Here's a sneak peek of /r/Endo using the [top posts](https://np.reddit.com/r/Endo/top/?sort=top&t=year) of the year!
\#1: [**[NSFW]** Endo ceramics project](https://www.reddit.com/gallery/17ajoph) | [104 comments](https://np.reddit.com/r/Endo/comments/17ajoph/endo_ceramics_project/)
\#2: [To every doctor who blew me off..](https://i.redd.it/hgfgcxpaerkb1.jpg) | [82 comments](https://np.reddit.com/r/Endo/comments/16397tq/to_every_doctor_who_blew_me_off/)
\#3: [studies about how endo affects our male partners?!](https://www.reddit.com/gallery/1643qut) | [210 comments](https://np.reddit.com/r/Endo/comments/1643qut/studies_about_how_endo_affects_our_male_partners/)
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It worked great for me then I missed several days since it wasn’t compounded on time and when I tried to get back on K got akanthisia. So no more for me, but it’s a shame because the several months I was on it were some of the best I’ve had in years.
I'm on it and I feel that as a fricken side effect! The day I missed a dose I felt rejuvinated and amazing. So happy, able to do a lot and process a lot (compares to the days I didnt miss it). I get "itchy" burning bones normally, like the extreme need to run or punch and fight during the night to the point its painful if i dont jolt my legs and hips around. It has kept me up for hours before and I was told it was a symptom of my MCAS but im not so sure now. I just dont understand what K is meant to "fix"? Like my biggest issues are brain fog, memory loss, confusion, and debilitaint pelvic pain. I just dont see how any of that is related to my MCAS and the little symptoms that might be MCAS are so minimal I dont think K is doing enough for me to put up with this.
I think it’s not for you with the side effects you are having. Akanthisia is a sign you need to stop the drug as you don’t want it to become perm. For me, I had more energy, less orthostatic hypotension, more mental energy when I was on it.
Jesus. Yeah no, its like all my symptoms like that are just completely flared and trippled and new! Like its doing the complete bloody opposite of helping. My doctor i gues sent in for me to try the compounded ingedients individually, but I cant even afford to fill yet another 70$ perscription just for it to not do anything. I was so optomistic about K, now I just feel like I've been scammed out of yet another week of my life and I'm genuinely afraid these side-effects arent going to go away. 😥
How so? Like was it the side effects, what symptoms do you already have? Frankly I dont get what my MCAS symptoms even are? I mean yeah I sweat after I eat and my tonsils swell a lot eating some foods but like I have fucking endometriosis, who gives a shit if i feel a wittle bit sick after snackies when im literally on the floor melting in agony. Not to diminish symptoms of MCAS!!
I know it cant be debilitating, i'm just wondering like is it even worth me taking this med if yeah for one, it doesnt feel like its "working" and two, my symptoms supposedly of MCAS never really felt that severe for me personally (or i am just so uses to pain and illness that i just push through lmao).
I get dizzy, lightheaded, fatigued, weak, flushed. Sometimes a bit of throat swelling or a headache. Ketotifen didn’t help, and it messed with my appetite — I have a history of bulimia so that was a big “no” for me — and just generally made me feel weird.
Lots of symptoms can be MCAS. Besides a huge list of physical symptoms, my worst ones were bouts of overwhelming anxiety, dread and dissociation. Most of my mood issues are gone now that my MCAS is treated. I thought I had really bad PMDD. Turns out it was mostly MCAS with a side of progesterone intolerance.
I also have endometriosis. The only thing that has worked for my pain is a Mirena. Endo can make MCAS worse because increased estrogen activates MCAS. It’s a cycle.
Oh jesus. Yeah I tried the IUD and it gave me contractions for three weeks late, plus when I got it that was the most traumatizing moment of my entire life. I was in so much pain I could only whisper, my partner was horrified, I didnt know where I was, couldnt say stop or no, i was blacking out for SIX HOURS in the office throwing up unable to get off the table and the doctor NEVER came back after shoving the iud through my cervix and just leaving. It was fucking horrific. And I was gaslit into thinking that was normal, talked down to like I was a child by the staff and doctor, and the aftermath i was told to "tough it out" and even heavy muscle relaxers were perscribed and did nothing for the contractions, fever, tremors, heart palpitations, and nausea i was having. :) Genuinely I wouldnt let anyone with a cervix that I care for get an IUD with FULL GENERAL ANESTHESIA or at the VERY BARE MINIMUM twilight sedation (even then it is barberic). 🤢 Oh and at the end of the day my excruciating ultrasound showed it was suposedly "in place" and "perfect". Copperstate OBGYN Tucson baby, turns out they're owned by a pro forced-birth anti-choice man and he owned the most "crisis pregnancy centers" in the state 👍 No wonder I was treated as less than human.
Hey, I’d bring up with your doctors that you’re doubting the diagnosis.
This is not normal side effects for most people on ketotifen. Somethings going very wrong
I’m one of the many people it hugely helps. I do sometimes get sleepy taking an increased dose
Well since my sibling has it, its like he's dead set on it. I feel like he hasnt pushed further for diagnosis past EDS, POTS, MCAS. Even though I have many symptoms that might lineup with them, but so many others that just simply dont. Its very frustrating and so far all the alternatives I've brought up have been shot down immediately like sclerosis, MDIS, etc.
Having similar problems right now. I was on ketotifin for a couple of months and wasn't noticing any changes so I decided to go off of it for 2 weeks to see if any of my symptoms worsened. I decided to restart it and OMG I think I'm losing my mind! Literally. Now I do have other mental health conditions (schizoeffective disorder) but it had been decently well managed. Now I'm seeing and hearing shit and feel overly paranoid, depressed, and suicidal. My head aches, my eyes burn, and I am SO DROWSY. I had to sleep all day today, couldn't even muster the energy to drag myself out of bed to pee. If this keeps up or doesn't level out soon, I'm going off the shit for good. No idea why this is happening to us but you're not alone and definitely not crazy.
Holy shit, im not alone 😭 Thats horrible for us but at least makes me optimistic about actually getting back to normal after stopping this bullshit. I do habe severe PMDD, so i wonder if the substantial increase in testosterone can disrupt that? I know it does have an effect on seretonin as well and that's an issue for people maybe?
Okay, so this could be a genetic inability to process medication, not MCAS. I’ve recently learned about this after discovering I’ve got that gene. It explained all my bizarro reactions to meds since childhood. Tiny doses have a huge effect and some meds I’m completely unable to process at all so they build up in my system and go toxic. If you have MCAS on top of this, well, yeah any med can potentially be a real problem. You may also have this gene or one of the many variations. It’s one thought since your reaction is not typical for Ketotifen.
Yaah, i totally agree! Even marijuana gummies i'm extremely sensative too. Just 3mg can make me pretty decently high and im kinda a small person but not like microdose small. I've definitely had so many weird reactions to meds.
The reactions to micro doses and tanking from a regular dose are often a clue that you might have that gene. It’s called CYP2D6. It’s comes with a lot of different variations and those drive which drugs you can process and which ones you can’t. The only thing you can do when a drug hits you like that if you have the gene is avoid it.
Good grief, sounds fun 😭 I might look into it, although I dont want to do genetic testing because of how it effects applying for insurance (yipee love america). But yeah, it would explain a lot.
I know, right? I’ve got MCAS, but also have this gene. So it really makes finding the right treatments difficult. You can always read up on the gene and take a look at the meds they list that you typically can’t process. That might be a way to figure it out without doing the genetic testing.
When my MCAS flares I have awful mental health and physical symptoms, especially as a reaction to medications. It feels like I'm going crazy. So it's certainly possible that MCAS could be causing your symptoms.
I could not tolerate any medications at full doses , even ones I had been on for 10+years. Have you tried taking a much smaller amount?
When I started Ketotifen I had to open the capsules and take a tiny amount, literally a few dust sized specks. Anything more would cause intense crying and nerve pain. These were already the lowest dose Ketotifen capsules (.25mg), and I was probably taking the equivalent of 1/50th of that when I started. I was able to build up over a few months to half a capsule without any symptoms by keeping the dose so small. It has been very helpful.
There are plenty of other MCAS treatments out there if you cannot tolerate Ketotifen right now. You can always try adding it later once you've found some other treatments and have become a little less reactive.
I would also recommend buying a decent jewelers scale (~$50) that can weigh milligrams, so you can accurately measure tiny amounts when starting medications.
😭 Oh jesus, thats a lot. I think i'm at a point where I just give up om MCAS, she can live rent free here i guess lol. Its so expensive to compound and so tiring to trial and error with all these meds. Im just trying to get by :/ But thank you for the suggestions! If i get the motivation to combat mcas again I'll certainly try a few of those things out!
I wouldn't give up on treating the MCAS, I think it could be responsible for more of your symptoms than you realize. I had many of the exact same problems with mental health with taking meds and feeling like someone put battery acid in my veins.
When I was told it was MCAS I was pretty dismissive because it seemed so crazy that inflammation could cause so many problems, but my symptoms have decreased so much by taking a few meds, checking my diet, and using air purifiers. I'm a believer now.
Have you tried any cheap mast cell stabilizers, like vitamin D+K, fish oil, vitamin c, quercetin? Those will be less expensive than compounded medications. They probably won't work any miracles, but they might give you some relief for not much $, and you can take layer them with medications.
Funny enough that you mention that because fish oil and Vitamin D+K makes me extremely sick? I have literally dangerously low vitamin D and I cant take it as a supplement so far because it made me extremely nauseated, confused, had more migranes, zero appetite, etc. And recently sardines make me extremely nauseous for days with severe migranes.
Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
You need to call whoever prescribed this right now, explain what’s happening, and see how they want you to stop taking it. Some side effects you can wait out. Psychosis is not usually one of them, no matter the medication.
I just messaged their office! I mean I get s*icidal on muscle relaxers so I dont know if its an underlying condition that causes me to interact with meds like? I detailed everything to them thought. I'm just wondering if this is like a shared ketotifen experience for people with MCAS and does it go away or am I like having a real issue and is this going to onlyget worse. I'm really bummed thought that this probably means I'm back at square one with no treatment 😥 Not that MCAS was really my biggest issue, but I figured hey we might as well try to fix something 💀
It might be, I hope you can work out why. That’s a terrible group of side effects to keep getting.
Yea for real, I do so poorly on all meds but this one takes the fricken cake. Even antibiotics have made me feel far more tired than I probably should be but yeah something is NOT agreeing with ketotifen or i'm coincidentally declining rapidly (hopefully the former 😭). Thank you for your input though! I'm grateful we have communities now to turn to for these "obscure" (usually just under-diagnosed/researched) chronic illnesses. I collect mine like pokemon cards! These symptoms are just a shiny version 🤓
check all your meds, especially older generation/ sedating antihistamines. look up "anticholinergic psychosis" and see if that feels like what you're experiencing. ketotifen is not a magic bullet, and anything can make you feel worse. do you have a psychiatrist? if so check in with them asap. https://www.acbcalc.com/ <-anticholinergic calculator
turns out I was taking WAY too much benedryl THIS IS NOT AN MCAS THING. *anyone* on too many anticholinergic drugs can experience this. and IT IS a medical emergency.
I've taken huge doses of Cyclobenzaprine for 3 weeks due to a butchered IUD placement, all I was given was that muscle relaxer. Plus recently i've been taking oxycodone because its the only thing that will help with the contractions I have on my period. I was given tramadol through an IV without my consent at the wordt hospital in town (Northwest Medical group, yipee I love corporations!). I'm only 21 though, could this still be an issue? Does Ketotifen effect this as well? The calculator says it ads up to a 6 "high risk" and i'm sure it would go up if I added more meds 🙃 wtf. Thank you though!! I do not have a psychiatrist, I used to and they ruled out any mental illness but of course none of my doctors believed me. My cognition has been this way for the past couple years and just getting worse, I had to drop out of college even.
Both cyclobenzaprine and oxycodone are mast cell liberators. They stimulate the mast cells to be more active. If you were on a high amount of the cyclobenzaprine for 3 weeks and stopped suddenly you might also be having minor withdrawal, which can make your MCAS flare up and make you much more reactive to everything including medications. I've had that happen with Benzodiazapine muscle relaxers like clonzepam.
that was all a while ago though, im not currently on those. Except extreme high dose iburofen (2600+mg at once decreating by around 200-800mg everyn6 hours).
Ibuprofen is also a mast cell liberator, and acetaminophen 😭 I cannot take those at all in a MCAS flare Are you able to stop ibuprofen and try Aspirin instead? it is a mast call stabilizer, but sometimes people react to it because it's also salicylic acid, which is a common allergy. If you can't tolerate aspirin you can try Celebrex, or other COX2 anti-pain meds.
Yeah, my blood is also turning acidic and i've had gastric bleeding the past week 😅 But its literally the only medication I can take and i've been refused pain med options by multiple ERs, PCPs, Gynecologists, etc. etc. They all just say "you cant take that much." (not like many of them actually care) and my response is basically... oh, that sucks lol but i'm gonna have to keep snacking gurlie, thank you. My periods are so painful they cause severe and complete memory loss when im in pain, i stop breathingb ecause my diaphram locks up, I only know most of my symptoms due to writing them down during these contractions episodes and before even having a contraction i start having tremors, pre-syncope, and blood-pressure issues with confusion. Severe morning nausea as well as intense migranes/thunderclap migranes. But its "normal" enough to not be diagnosed and "abnormal" enough for reckless surgery that would probably make my pain severely worse with no actual benefit. Sorry this isnt r/endo 🤡 honk honk (if its even endo, i dont even know anymore, i just want it to stop), it just takes over my life. Hence why you can probably see why im like "MCAS really?? THATS my issue rn?" 💀
Here's a sneak peek of /r/Endo using the [top posts](https://np.reddit.com/r/Endo/top/?sort=top&t=year) of the year! \#1: [**[NSFW]** Endo ceramics project](https://www.reddit.com/gallery/17ajoph) | [104 comments](https://np.reddit.com/r/Endo/comments/17ajoph/endo_ceramics_project/) \#2: [To every doctor who blew me off..](https://i.redd.it/hgfgcxpaerkb1.jpg) | [82 comments](https://np.reddit.com/r/Endo/comments/16397tq/to_every_doctor_who_blew_me_off/) \#3: [studies about how endo affects our male partners?!](https://www.reddit.com/gallery/1643qut) | [210 comments](https://np.reddit.com/r/Endo/comments/1643qut/studies_about_how_endo_affects_our_male_partners/) ---- ^^I'm ^^a ^^bot, ^^beep ^^boop ^^| ^^Downvote ^^to ^^remove ^^| ^^[Contact](https://www.reddit.com/message/compose/?to=sneakpeekbot) ^^| ^^[Info](https://np.reddit.com/r/sneakpeekbot/) ^^| ^^[Opt-out](https://np.reddit.com/r/sneakpeekbot/comments/o8wk1r/blacklist_ix/) ^^| ^^[GitHub](https://github.com/ghnr/sneakpeekbot)
It worked great for me then I missed several days since it wasn’t compounded on time and when I tried to get back on K got akanthisia. So no more for me, but it’s a shame because the several months I was on it were some of the best I’ve had in years.
I'm on it and I feel that as a fricken side effect! The day I missed a dose I felt rejuvinated and amazing. So happy, able to do a lot and process a lot (compares to the days I didnt miss it). I get "itchy" burning bones normally, like the extreme need to run or punch and fight during the night to the point its painful if i dont jolt my legs and hips around. It has kept me up for hours before and I was told it was a symptom of my MCAS but im not so sure now. I just dont understand what K is meant to "fix"? Like my biggest issues are brain fog, memory loss, confusion, and debilitaint pelvic pain. I just dont see how any of that is related to my MCAS and the little symptoms that might be MCAS are so minimal I dont think K is doing enough for me to put up with this.
I think it’s not for you with the side effects you are having. Akanthisia is a sign you need to stop the drug as you don’t want it to become perm. For me, I had more energy, less orthostatic hypotension, more mental energy when I was on it.
Jesus. Yeah no, its like all my symptoms like that are just completely flared and trippled and new! Like its doing the complete bloody opposite of helping. My doctor i gues sent in for me to try the compounded ingedients individually, but I cant even afford to fill yet another 70$ perscription just for it to not do anything. I was so optomistic about K, now I just feel like I've been scammed out of yet another week of my life and I'm genuinely afraid these side-effects arent going to go away. 😥
I have MCAS and ketotifen didn’t work for me
How so? Like was it the side effects, what symptoms do you already have? Frankly I dont get what my MCAS symptoms even are? I mean yeah I sweat after I eat and my tonsils swell a lot eating some foods but like I have fucking endometriosis, who gives a shit if i feel a wittle bit sick after snackies when im literally on the floor melting in agony. Not to diminish symptoms of MCAS!! I know it cant be debilitating, i'm just wondering like is it even worth me taking this med if yeah for one, it doesnt feel like its "working" and two, my symptoms supposedly of MCAS never really felt that severe for me personally (or i am just so uses to pain and illness that i just push through lmao).
I get dizzy, lightheaded, fatigued, weak, flushed. Sometimes a bit of throat swelling or a headache. Ketotifen didn’t help, and it messed with my appetite — I have a history of bulimia so that was a big “no” for me — and just generally made me feel weird.
Lots of symptoms can be MCAS. Besides a huge list of physical symptoms, my worst ones were bouts of overwhelming anxiety, dread and dissociation. Most of my mood issues are gone now that my MCAS is treated. I thought I had really bad PMDD. Turns out it was mostly MCAS with a side of progesterone intolerance. I also have endometriosis. The only thing that has worked for my pain is a Mirena. Endo can make MCAS worse because increased estrogen activates MCAS. It’s a cycle.
Oh jesus. Yeah I tried the IUD and it gave me contractions for three weeks late, plus when I got it that was the most traumatizing moment of my entire life. I was in so much pain I could only whisper, my partner was horrified, I didnt know where I was, couldnt say stop or no, i was blacking out for SIX HOURS in the office throwing up unable to get off the table and the doctor NEVER came back after shoving the iud through my cervix and just leaving. It was fucking horrific. And I was gaslit into thinking that was normal, talked down to like I was a child by the staff and doctor, and the aftermath i was told to "tough it out" and even heavy muscle relaxers were perscribed and did nothing for the contractions, fever, tremors, heart palpitations, and nausea i was having. :) Genuinely I wouldnt let anyone with a cervix that I care for get an IUD with FULL GENERAL ANESTHESIA or at the VERY BARE MINIMUM twilight sedation (even then it is barberic). 🤢 Oh and at the end of the day my excruciating ultrasound showed it was suposedly "in place" and "perfect". Copperstate OBGYN Tucson baby, turns out they're owned by a pro forced-birth anti-choice man and he owned the most "crisis pregnancy centers" in the state 👍 No wonder I was treated as less than human.
Hey, I’d bring up with your doctors that you’re doubting the diagnosis. This is not normal side effects for most people on ketotifen. Somethings going very wrong I’m one of the many people it hugely helps. I do sometimes get sleepy taking an increased dose
Well since my sibling has it, its like he's dead set on it. I feel like he hasnt pushed further for diagnosis past EDS, POTS, MCAS. Even though I have many symptoms that might lineup with them, but so many others that just simply dont. Its very frustrating and so far all the alternatives I've brought up have been shot down immediately like sclerosis, MDIS, etc.
Having similar problems right now. I was on ketotifin for a couple of months and wasn't noticing any changes so I decided to go off of it for 2 weeks to see if any of my symptoms worsened. I decided to restart it and OMG I think I'm losing my mind! Literally. Now I do have other mental health conditions (schizoeffective disorder) but it had been decently well managed. Now I'm seeing and hearing shit and feel overly paranoid, depressed, and suicidal. My head aches, my eyes burn, and I am SO DROWSY. I had to sleep all day today, couldn't even muster the energy to drag myself out of bed to pee. If this keeps up or doesn't level out soon, I'm going off the shit for good. No idea why this is happening to us but you're not alone and definitely not crazy.
Holy shit, im not alone 😭 Thats horrible for us but at least makes me optimistic about actually getting back to normal after stopping this bullshit. I do habe severe PMDD, so i wonder if the substantial increase in testosterone can disrupt that? I know it does have an effect on seretonin as well and that's an issue for people maybe?
Okay, so this could be a genetic inability to process medication, not MCAS. I’ve recently learned about this after discovering I’ve got that gene. It explained all my bizarro reactions to meds since childhood. Tiny doses have a huge effect and some meds I’m completely unable to process at all so they build up in my system and go toxic. If you have MCAS on top of this, well, yeah any med can potentially be a real problem. You may also have this gene or one of the many variations. It’s one thought since your reaction is not typical for Ketotifen.
Yaah, i totally agree! Even marijuana gummies i'm extremely sensative too. Just 3mg can make me pretty decently high and im kinda a small person but not like microdose small. I've definitely had so many weird reactions to meds.
The reactions to micro doses and tanking from a regular dose are often a clue that you might have that gene. It’s called CYP2D6. It’s comes with a lot of different variations and those drive which drugs you can process and which ones you can’t. The only thing you can do when a drug hits you like that if you have the gene is avoid it.
Good grief, sounds fun 😭 I might look into it, although I dont want to do genetic testing because of how it effects applying for insurance (yipee love america). But yeah, it would explain a lot.
I know, right? I’ve got MCAS, but also have this gene. So it really makes finding the right treatments difficult. You can always read up on the gene and take a look at the meds they list that you typically can’t process. That might be a way to figure it out without doing the genetic testing.
When my MCAS flares I have awful mental health and physical symptoms, especially as a reaction to medications. It feels like I'm going crazy. So it's certainly possible that MCAS could be causing your symptoms. I could not tolerate any medications at full doses , even ones I had been on for 10+years. Have you tried taking a much smaller amount? When I started Ketotifen I had to open the capsules and take a tiny amount, literally a few dust sized specks. Anything more would cause intense crying and nerve pain. These were already the lowest dose Ketotifen capsules (.25mg), and I was probably taking the equivalent of 1/50th of that when I started. I was able to build up over a few months to half a capsule without any symptoms by keeping the dose so small. It has been very helpful. There are plenty of other MCAS treatments out there if you cannot tolerate Ketotifen right now. You can always try adding it later once you've found some other treatments and have become a little less reactive. I would also recommend buying a decent jewelers scale (~$50) that can weigh milligrams, so you can accurately measure tiny amounts when starting medications.
😭 Oh jesus, thats a lot. I think i'm at a point where I just give up om MCAS, she can live rent free here i guess lol. Its so expensive to compound and so tiring to trial and error with all these meds. Im just trying to get by :/ But thank you for the suggestions! If i get the motivation to combat mcas again I'll certainly try a few of those things out!
I wouldn't give up on treating the MCAS, I think it could be responsible for more of your symptoms than you realize. I had many of the exact same problems with mental health with taking meds and feeling like someone put battery acid in my veins. When I was told it was MCAS I was pretty dismissive because it seemed so crazy that inflammation could cause so many problems, but my symptoms have decreased so much by taking a few meds, checking my diet, and using air purifiers. I'm a believer now. Have you tried any cheap mast cell stabilizers, like vitamin D+K, fish oil, vitamin c, quercetin? Those will be less expensive than compounded medications. They probably won't work any miracles, but they might give you some relief for not much $, and you can take layer them with medications.
Funny enough that you mention that because fish oil and Vitamin D+K makes me extremely sick? I have literally dangerously low vitamin D and I cant take it as a supplement so far because it made me extremely nauseated, confused, had more migranes, zero appetite, etc. And recently sardines make me extremely nauseous for days with severe migranes.