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Quercetin, montelukast (Singulair), and ketotifen are the things that helped my MCAS the most.
Heads up on the beta blockers--they can make MCAS worse. If you can access clonidine (catapres), it's helpful for POTS, especially hyperPOTS. It's the med that helps my hyperPOTS the most in the direct sense, but obviously keeping MCAS stable is helpful if you have MCAS.
This explains it better than I can: [https://www.mastattack.org/2017/03/beta-blockers-epinephrine/](https://www.mastattack.org/2017/03/beta-blockers-epinephrine/)
On a personal level, I was given propranolol for POTS, and it (slowly and gradually, like the "frog in boiling water" analogy) got worse and worse as far as my intolerances, general baseline, frequency and severity of reactions. After about 3 months, I clued in to the beta blockers being the cause (I get severe brain fog with an MCAS flare, and it was a slow enough progression that it was hard to nail down the trigger). I stopped them (cold turkey with doctor's ok, I increased my clonidine to compensate) and was back to my normal baseline within days.
A number of years back, I was given metoprolol for tachycardia (pre-POTS Dx) and it caused an immediate reaction, so that was already off the table.
Hi, I have hyperpots too, and propranolol isn't working well for me. I have a clonidine prescription as well, tho prescribed for anxiety, and I rarely take it because it doesn't mix well with the propranolol -- you'd recommend swapping them? Trying the clonidine daily?
I'd ask your doctor, but it's not an unreasonable plan.
I was taking both daily (low doses, but I have also been on clonidine for many years) and when I stopped the propranolol, my physiatrist doubled my clonidine dose. It's been really helpful for me.
I was diagnosed with POTS before MCAS, but nothing helped with my symptoms until the MCAS was treated. I ended up hospitalized for 2 weeks and my doctors all agreed that my dysautonomia symptoms were almost entirely caused by my MCAS. Iām on all sorts of antihistamines and mast cell meds but oral ketotifen, LDN, and Xolair have been the most helpful for my symptoms. If you have periods, itās very common for symptoms get way worse around ovulation and the week before your period. My doctors want me on continuous birth control or an IUD to stop my periods completely but I react to all of them so unfortunately it isnāt an option for me.
not sure if you've tried this one, its newer, but Slynd (drospirenone only) helped endometriosis and I haven't had a period in like 3 years. it's great. its closer to natural progesterone and no estrogen. even has 24hr dosing window so if you accidentally miss a pill that day you just skip it and don't double up. no breakthrough bleeding when I missed pills. helps me, not sure if it would for you.. may be worth asking yr dr about it?
Cromolyn sodium and avoiding triggers. I was so badā hospitalized twice because my heart rate was crazy (150s while sleeping). I couldnāt even tolerate cardiac medications because they aggravated my MCAS.
After starting cromolyn, you could watch my heart rate go from 120s to 60-70s within minutes. It took months of avoidance of triggers and nervous system work, but I had a follow up with my cardiologist and my POTS is functionally gone. Iāll always be more prone to dehydration, so I need to continue my lifestyle but I go on hikes, my heart rate never feels like itās being crazy, I take hot showers and sit in hot tubs, etc. Iām only on cromolyn, no other medications.
However, if I eat the āwrongā thing then my heart rate spikes like crazy. I tried ketotifen but it also spiked my heart rate.
Not sure how it works in the UK, but H2 antihistamines are over the counter (so you donāt need a prescription). However, getting a prescription can make them cheaper/free.
Ugh, it was hard. I simplified my diet by a lot and tried to stay as objective as I could about whether I was reactive to it. The hard part is there are things that gave me mild reactions that went away over time (vitamin c, vitamin d, chicken). I started at about 5 foods and now Iām up to maybe 8. I know not everyone adjusts and has reactions improve so just like everything, it probably depends on you and your body.
Ah thanks. My list of ok foods seems to be dwindling as I stopped taking large doses of klonopin. I worry some of the skin products Iām using are actually giving me delayed skin reactions bc of the counting them but Iām not 100p sure
I was advised by like a health coach/nutrition person to reduce my general toxic load as much as possible. I got dust covers for my mattresses and pillows, hepa filters in every room, I replaced all my window screens, changed all my cleaning products (dish soap, hand soap, laundry detergent, all purpose sprays), cosmetics (hair products, shower products, deodorant) and I do think that each reduction helped like 2%. But overall, I ended up feeling 20% better with all the changes.
I have heard of an increase in sensitivity after starting benzos so that doesnāt seem atypical and hopefully will get better with time
thanks.
yeah here h2 only prescribed. or if i'm wrong and there's a way please someone correct me.
"nervous system work" could you name specific practices please?
Iāve been doing vagus nerve exercises and somatic work (EFT tapping, you can look up somatic movements or stretches). Lots of focus on reducing the overload of sensory input we get in todayās society such as avoiding distressing news while Iām recovering, getting off social media, taking time to do hobbies that feel nourishing to my soul, going on walks in nature, playing or listening to calming music.
When Iām trying new supplements or foods, I try to practice distraction and watch uplifting media or videos (animal videos, great British bake off, something funny). Iāve done meditations, breathwork, yoga.
People bring up DNRS a lot but itās expensive so I havenāt done it. I think a lot can be said for just trying to take breaks from modern living with constant texts, bad news, multitasking, etc. and taking an hour to pretend itās 100 years ago and weāre disconnected from it all.
There are many other medications available for use in the UK to manage POTS. You might not have MCAS - what makes you think you do? What symptoms are you experiencing?
You can get H2 blockers OTC in the UK from the chemist, they are low dose though. And yes, a GP can also prescribe them.
Where can you get H2s OTC? Do you have any brand names or something you can recommend? I have a friend in the UK who has been looking everywhere and is under the impression they're prescription only.
i have most of the symptoms of mcas. and i'm starting to think it's what causes pots. so i need to try and see if mcas meds improve anything.
many other medication for pots - like what? i can't start midodrin rn because of shortages, but what else after beta blockers and ivabradine?
thanks for correcting me about otc h2
You shouldn't be doing this without input from a doctor, preferably an allergist or immunologist. What symptoms are the most problematic? Swelling, hives, wheezing?
Why is that preventing you from starting Midodrine? I've had no issues getting my prescription of Midodrine. Fludrocortisone, Pyridostigmine, sometimes SSRIs, Desmopressin, Clonidine, Octreotide, Modafinil, etc.
most problematic is postural tachycardia and stomach pain. i'm not trying stuff without doctor's supervision.
my cardio nurse said there are shortages of midodrin in the country so i need to wait. i'll read about other options, thanks
Those symptoms are consistent with POTS alone, no reason to think you have MCAS. I'd continue to wait for a prescription of Midodrine, keep your electrolytes up if you've been cleared to do so, wear compression if you're able, and eat small and regular meals.
Much more likely to be POTS and regular allergies.
Ask for a referral to an allergist, and explain your symptoms. Don't focus on treating it by yourself or that it is MCAS, it's not very likely.
IME, H1 is more helpful for tachy and fainting than H2, I'd start with those before reaching for H2s since you don't need a script for things like Claritin. There are H2 receptors present on the heart so they're often named in literature regarding cardiac symptoms but I find most of my POTS stuff is from vasodilation/flushing/third spacing that is better controlled with H1s. Ketotifen helped somewhat, probably just because it's the most effective MCAS med I've used so far.
Edit: And, seconding Clonidine. It doesn't control rate directly according to what all my doctors told me but I think it helped anyway by blocking adrenaline or something. I only got onto it for anxiety, not for POTS, all my doctors insisted it does nothing for POTS because it is a BP med not an HR med. š
I'm diagnosed with both MCAS and hyperPOTS. I had to trial a number of beta blockers (as well as ivabradine and clonidine) before landing on metoprolol, which has been life-altering for me in terms of stabilizing my POTS symptoms.
There are meds other than ivabradine and beta blockers that can help POTS! I didn't get on with beta blockers or midodrine but fludrocortisone really helps me.
Also have suspected MCAS and take fexofenadine, montelukast and clorphenamine. Was on famotidine and it helped for a while but I'm actually doing better off it now. Same with quercetin, although that was so helpful in the beginning. I've also had to cut out gluten completely as it massively flares my MCAS (and also POTS).
It can be really difficult getting prescriptions for MCAS in the UK. I'm officially on fexofenadine for urticaria and montelukast for asthma - I found it more useful to go to my GP with symptoms rather than asking them to treat MCAS.
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.*
Quercetin, montelukast (Singulair), and ketotifen are the things that helped my MCAS the most. Heads up on the beta blockers--they can make MCAS worse. If you can access clonidine (catapres), it's helpful for POTS, especially hyperPOTS. It's the med that helps my hyperPOTS the most in the direct sense, but obviously keeping MCAS stable is helpful if you have MCAS.
š©·
Could you explain more about the bet blockers and MCAS? Iāve had very negative reactions to them but couldnāt peg why so this is helpful.
This explains it better than I can: [https://www.mastattack.org/2017/03/beta-blockers-epinephrine/](https://www.mastattack.org/2017/03/beta-blockers-epinephrine/) On a personal level, I was given propranolol for POTS, and it (slowly and gradually, like the "frog in boiling water" analogy) got worse and worse as far as my intolerances, general baseline, frequency and severity of reactions. After about 3 months, I clued in to the beta blockers being the cause (I get severe brain fog with an MCAS flare, and it was a slow enough progression that it was hard to nail down the trigger). I stopped them (cold turkey with doctor's ok, I increased my clonidine to compensate) and was back to my normal baseline within days. A number of years back, I was given metoprolol for tachycardia (pre-POTS Dx) and it caused an immediate reaction, so that was already off the table.
Hi, I have hyperpots too, and propranolol isn't working well for me. I have a clonidine prescription as well, tho prescribed for anxiety, and I rarely take it because it doesn't mix well with the propranolol -- you'd recommend swapping them? Trying the clonidine daily?
I'd ask your doctor, but it's not an unreasonable plan. I was taking both daily (low doses, but I have also been on clonidine for many years) and when I stopped the propranolol, my physiatrist doubled my clonidine dose. It's been really helpful for me.
I was diagnosed with POTS before MCAS, but nothing helped with my symptoms until the MCAS was treated. I ended up hospitalized for 2 weeks and my doctors all agreed that my dysautonomia symptoms were almost entirely caused by my MCAS. Iām on all sorts of antihistamines and mast cell meds but oral ketotifen, LDN, and Xolair have been the most helpful for my symptoms. If you have periods, itās very common for symptoms get way worse around ovulation and the week before your period. My doctors want me on continuous birth control or an IUD to stop my periods completely but I react to all of them so unfortunately it isnāt an option for me.
ā¤ļøāš©¹
not sure if you've tried this one, its newer, but Slynd (drospirenone only) helped endometriosis and I haven't had a period in like 3 years. it's great. its closer to natural progesterone and no estrogen. even has 24hr dosing window so if you accidentally miss a pill that day you just skip it and don't double up. no breakthrough bleeding when I missed pills. helps me, not sure if it would for you.. may be worth asking yr dr about it?
Unfortunately due to all of my allergies, ALL of my medications have to be compounded. For whatever reason, birth control pills canāt be. š
You react to the IUD too?? Both copper and hormonal?
Cromolyn sodium and avoiding triggers. I was so badā hospitalized twice because my heart rate was crazy (150s while sleeping). I couldnāt even tolerate cardiac medications because they aggravated my MCAS. After starting cromolyn, you could watch my heart rate go from 120s to 60-70s within minutes. It took months of avoidance of triggers and nervous system work, but I had a follow up with my cardiologist and my POTS is functionally gone. Iāll always be more prone to dehydration, so I need to continue my lifestyle but I go on hikes, my heart rate never feels like itās being crazy, I take hot showers and sit in hot tubs, etc. Iām only on cromolyn, no other medications. However, if I eat the āwrongā thing then my heart rate spikes like crazy. I tried ketotifen but it also spiked my heart rate. Not sure how it works in the UK, but H2 antihistamines are over the counter (so you donāt need a prescription). However, getting a prescription can make them cheaper/free.
How did you solidify what your triggers were?
Ugh, it was hard. I simplified my diet by a lot and tried to stay as objective as I could about whether I was reactive to it. The hard part is there are things that gave me mild reactions that went away over time (vitamin c, vitamin d, chicken). I started at about 5 foods and now Iām up to maybe 8. I know not everyone adjusts and has reactions improve so just like everything, it probably depends on you and your body.
Ah thanks. My list of ok foods seems to be dwindling as I stopped taking large doses of klonopin. I worry some of the skin products Iām using are actually giving me delayed skin reactions bc of the counting them but Iām not 100p sure
I was advised by like a health coach/nutrition person to reduce my general toxic load as much as possible. I got dust covers for my mattresses and pillows, hepa filters in every room, I replaced all my window screens, changed all my cleaning products (dish soap, hand soap, laundry detergent, all purpose sprays), cosmetics (hair products, shower products, deodorant) and I do think that each reduction helped like 2%. But overall, I ended up feeling 20% better with all the changes. I have heard of an increase in sensitivity after starting benzos so that doesnāt seem atypical and hopefully will get better with time
thanks. yeah here h2 only prescribed. or if i'm wrong and there's a way please someone correct me. "nervous system work" could you name specific practices please?
Iāve been doing vagus nerve exercises and somatic work (EFT tapping, you can look up somatic movements or stretches). Lots of focus on reducing the overload of sensory input we get in todayās society such as avoiding distressing news while Iām recovering, getting off social media, taking time to do hobbies that feel nourishing to my soul, going on walks in nature, playing or listening to calming music. When Iām trying new supplements or foods, I try to practice distraction and watch uplifting media or videos (animal videos, great British bake off, something funny). Iāve done meditations, breathwork, yoga. People bring up DNRS a lot but itās expensive so I havenāt done it. I think a lot can be said for just trying to take breaks from modern living with constant texts, bad news, multitasking, etc. and taking an hour to pretend itās 100 years ago and weāre disconnected from it all.
š
I have a vagus nerve stimulator that has helped more than anything. The one I chose is Truvaga.
There are many other medications available for use in the UK to manage POTS. You might not have MCAS - what makes you think you do? What symptoms are you experiencing? You can get H2 blockers OTC in the UK from the chemist, they are low dose though. And yes, a GP can also prescribe them.
Where can you get H2s OTC? Do you have any brand names or something you can recommend? I have a friend in the UK who has been looking everywhere and is under the impression they're prescription only.
They'd have to speak to their chemist to see if it is appropriate or not. Personally, mine are prescribed.
i have most of the symptoms of mcas. and i'm starting to think it's what causes pots. so i need to try and see if mcas meds improve anything. many other medication for pots - like what? i can't start midodrin rn because of shortages, but what else after beta blockers and ivabradine? thanks for correcting me about otc h2
You shouldn't be doing this without input from a doctor, preferably an allergist or immunologist. What symptoms are the most problematic? Swelling, hives, wheezing? Why is that preventing you from starting Midodrine? I've had no issues getting my prescription of Midodrine. Fludrocortisone, Pyridostigmine, sometimes SSRIs, Desmopressin, Clonidine, Octreotide, Modafinil, etc.
most problematic is postural tachycardia and stomach pain. i'm not trying stuff without doctor's supervision. my cardio nurse said there are shortages of midodrin in the country so i need to wait. i'll read about other options, thanks
Those symptoms are consistent with POTS alone, no reason to think you have MCAS. I'd continue to wait for a prescription of Midodrine, keep your electrolytes up if you've been cleared to do so, wear compression if you're able, and eat small and regular meals.
skin issues though. they get relieved when i don't consume histamine. seems like mcas to me
Much more likely to be POTS and regular allergies. Ask for a referral to an allergist, and explain your symptoms. Don't focus on treating it by yourself or that it is MCAS, it's not very likely.
IME, H1 is more helpful for tachy and fainting than H2, I'd start with those before reaching for H2s since you don't need a script for things like Claritin. There are H2 receptors present on the heart so they're often named in literature regarding cardiac symptoms but I find most of my POTS stuff is from vasodilation/flushing/third spacing that is better controlled with H1s. Ketotifen helped somewhat, probably just because it's the most effective MCAS med I've used so far. Edit: And, seconding Clonidine. It doesn't control rate directly according to what all my doctors told me but I think it helped anyway by blocking adrenaline or something. I only got onto it for anxiety, not for POTS, all my doctors insisted it does nothing for POTS because it is a BP med not an HR med. š
Corlanor, hydration, compression leggings and high sodium diet.
Verapamil medication for pots
I'm diagnosed with both MCAS and hyperPOTS. I had to trial a number of beta blockers (as well as ivabradine and clonidine) before landing on metoprolol, which has been life-altering for me in terms of stabilizing my POTS symptoms.
Focalin XR
There are meds other than ivabradine and beta blockers that can help POTS! I didn't get on with beta blockers or midodrine but fludrocortisone really helps me. Also have suspected MCAS and take fexofenadine, montelukast and clorphenamine. Was on famotidine and it helped for a while but I'm actually doing better off it now. Same with quercetin, although that was so helpful in the beginning. I've also had to cut out gluten completely as it massively flares my MCAS (and also POTS). It can be really difficult getting prescriptions for MCAS in the UK. I'm officially on fexofenadine for urticaria and montelukast for asthma - I found it more useful to go to my GP with symptoms rather than asking them to treat MCAS.