LindsayI think of trying new medications as the equivalent of going on a blind first date – it could end up being pretty cool, but it might also be awful and make you want to vomit.
I had an appointment with my cardiologist. We discussed many things, including stopping all medication (more on that next post), and also adding a new medication – essentially the kind of contradictory discussion only a doctor and lawyer can have.
sorry, my cromolyn already called shotgun.
the amount of cromolyn i received from the pharmacy weighed enough to set off the “no seat belt” warning in my car.
The medication we added is called cromolyn, or brand name Gastrocrom. Cromolyn is a mast cell stabilizer. You may remember from a previous post that mast cells are part of the immune system and are found throughout the body. Mast cells release histamine and other substances during inflammatory and allergic reactions. Mast cell activation disorders (MCAD) are disorders characterized by “accumulation of genetically altered mast cells and/or abnormal release of these cells’ mediators”. As the cells are found throughout the body, they affect numerous organs, particularly the skin, gastrointestinal tract, and cardiovascular and nervous system.
Symptoms of MCAD include:
- digestive issues,
- nausea,
- abdominal cramping,
- flushing,
- itchy skin, rashes and/or hives,
- tachycardia,
- brain fog,
- lightheadedness,
- palpitations,
- shortness of breath,
- lymph node swelling,
- anaphylaxsis,
- fatigue, and
- general weakness.
Sounds like POTS and every other chronic illness, right??
I was prescribed oral cromolyn which comes as an oral solution in little vials. To take it, I have to mix it with water, then drink it down, 4 times per day. The taste is awful, but it makes me feel like I’m a magician mixing a secret potion. Or manufacturing drugs.
We’re not sure that I have MCAD, but I sometimes have severe sneezing allergic reactions and almost always have itchy skin, rashes and occasional flushing. As I have found some relief in the H1/H2 blocker treatment I’m on that’s typically prescribed for MCAD, my POTS doctor thought we should add cromolyn, which is also part of the MCAD treatment. For more information about the H1/H2 blocker treatment I’m on, check out this post.
I’m currently on Day 3 of cromolyn. So far, it’s a pretty sweet blind date. Sure, he gives me headaches, makes me mildly nauseous and leaves a bad taste in my mouth. But like many blind dates, cromolyn leaves me hopeful and wanting more.
I realized that I forgot to take my beta blocker yesterday morning, and I didn’t even notice until I went to take my nightly dosage and saw the morning’s dose still sitting in the “Tuesday” slot of my little blue pill box. Usually I can tell within an hour of forgetting a beta blocker dose. In fact, last week I had to leave work to go home and take it – I just couldn’t function without it. It’s certainly possible I was just having a “good day” and my experience would have been the same without the cromolyn. It’s still too early to tell.
But if cromolyn asked me for a second date, I’d say yes.
I leave you with one of my new favorite quotes:
“Life is either a daring adventure or nothing at all.” – Helen Keller
Smell ya later.
– Linds
That’s sounds very encouraging Lindsay. I’m curious to see how this works out for you.
Me too! I’m hoping it makes a difference.
Hi Linds,
I’ve been reading about MCAD with interest as I have the pots and my sister has chronic hives for the last 2 years. I also get awful heartburn so have been trying Zantac but not a h1 blocker yet.
Out of interest, do you get heartburn? Do you get asthma symptoms also? I am very sensitive to any fumes/smells, my lungs get ‘itchy’ and spasm straight away eg woodfire smoke and perfume! I have a mast cell puffer similar to cromolyn, called neomercasole (I think) for this plus ventolin.
I tried loratadine once (h1 blocker) but it was a high bp day and I think this made it worse. Have you notice any weird bp goings on with your h1 blocker.
So many questions, sorry, I hope you can answer them. We both take atenolol 😉
Thanks
Jo
Hi Jo,
Thanks for your comment, I welcome all your questions!
I DO get heartburn. Without some kind of medication, I have heartburn nearly all the time. The H2 blocker (I take zantac) has helped a lot with this, but certain foods will still give me heartburn. I am also very sensitive to smells, especially chemicals, perfume and tobacco smoke. My downstairs neighbor smokes and I can tell the instant he lights up. Even if I close all my windows, it still continues to bother me for a while. I had asthma as a kid and was recently prescribed an inhaler, but I don’t actually have asthma. Just symptoms I guess. Does your puffer that is similar to cromolyn help you at all?
I haven’t noticed any weird bp with my h1 blocker, but I don’t check my bp very often. I should probably start checking occasionally, just to see if the cromolyn or any other meds are having an affect.
We sound identical Linds. My sense for smell is through the roof also. I think the mast cell puffer helps, but when you first take it it makes you cough. Ventolin helps the most. I had exczma bad as a child but not asthma and mines like yours, allergy related.
Do you take your atenolol twice a day now? How many mg are you on now?
i take atenolol twice a day – i’m on the 3/4 of a 25mg pill right now, so i take 1/2 pill in morning, 1/4 pill at night. i’m in the process of getting off of it, so that will be reduced each month.
Interesting that your coming off atenolol. I tried 25mg, then 12.5mg and now I’m down to about 6-8mg. The florinef seems to also reduce heart rate. Do you find florinef/fludro is helping you?
i actually never taken florinef. do you find that 6-8mg of atenolol is enough?
Sorry I thought you mentioned florinef before. Yes I’m finding the 6-8mg atenolol is helping. I still have days of tachy up to 130 though ( it was up to 180) but that’s all I can tolerate of the atenolol and I do notice if I don’t take it. I take it with dinner so it does wear off a bit during the day. I can’t take it In the day it makes me feel to yuck. Atenolol is something like 4 times stronger than say metoprolol when compared in studies so my dose is equivalent to about 25mg or so of metoprolol which a lot of pots people seem to be on.
Linds have you had a tilt table test? Mine showed the massive heart rate increase but also interestingly my body fought to kept my bp up and it dropped to the 70’s/40’s at times. Just wondering if you get the low bp as that’s why I can only tolerate the low dose atenolol, plus the Brady at night that you also mentioned you had in a previous post. Florinef is meant to help with this.
i had a tilt table a few years ago – it’s actually how i was diagnosed with POTS. my bp stayed normal during the TTT, but i’ve had a couple of stress (treadmill) tests that both showed i have a blunted bp response to exercise. everytime i check my bp at home it’s on the lower side of normal.
so, i think if i’m just standing still my bp is fine, but i start to have problems when i move.
It’s interesting because I think my bp was normal when first diagnosed, apart from spikes, but after a while adrenal fatigue sets in and maybe lowers it. Just a theory I have 😉
Wow…. not noticing that you forgot a beta blocker ! That is impressive. I’m fighting battles with what Medicare covers now (no extended release generics in the generic ‘tier’). Had to go back to regular release, and was flattened.
I hope you keep having good results from the cromolyn. I remember that from a LONG time ago, mostly with respiratory patients.
thank you! i was shocked when i realized i had not taken the beta blocker but didn’t notice – that NEVER happens! i’m hoping it means the cromolyn is working, and that i wasn’t just having an unusual day.
I would think it is very hopeful !
I picked up my Cromolyn today. I REALLY won’t be able to take additional/increased headaches, so I’m crossing my fingers I don’t get that side effect. I’m happy to have you doing this experiment at the same time. 🙂
oh, great, i will be very interested in hearing what you think! if it helps at all, the headaches have already become more mild, and many people i know on cromolyn haven’t had an increase in headaches. hope it works for you!
It’s a stab in the dark. My history is MCAS, but my current symptoms are ME. I wonder if it’s foolhardy to take Cromolyn, but I’m hopeful that I’ll suddenly go, “wow, my headaches/bowels/dizzy spells are better!”
That is a PERFECT analogy!!
I am writing a project on invisible illnesses, Would you be interested in telling your story? Kelly
sure, i’m always happy to share my story!
Good luck – will be following how you get on with it. I have a script but so far have been too chicken to try it – I’m such a coward 😉 I know someone whose POTS almost totally resolved after going on Cromolyn x
thank you!
That’s hard since we need to move around. I’m sure my bp increases with exercise and moving around but then goes low afterwards. Do you mean yours goes low by saying blunted?
as i’m sure you know, bp consists of a systolic rate (top #) over a diastolic rate (bottom #). when exercising, the systolic number increases, but diastolic remains about the same. a normal systolic range for exercising is between 160 and 220.
according to my stress test, when i exercise, my systolic is at about 130 – so it goes up, but not nearly as much as it should. i assume this is why i’m often very lightheaded while engaging in any kind of activity!
I actually just saw my neurologist today. I gave up on all my regular drs and finally went to Mayo clinic. He took me off my beta blockers all together, prescribed me Cromolyn, high dose allegra and protonix. He said the beta blocker can cause pots to worsen, since they took me off of it two weeks ago, my heart rate now only runs in the low100’s, but i still can’t exert myself much without becoming symptomatic. I have a ton more energy though! On top of treating me for a mast cell disorder, my celiac disease markers were also positive. So my next plan of action is to try these new meds, start a gluten free diet and gradually start some mild exercise. Hopefully it works!
Antonia – that’s very interesting that your dr said the beta blocker can cause POTS to worsen. what beta blocker were you on?
I was taking metoprolol, then switched to propranolol in April. I’ve been off for three weeks now. My heart rate has been running just over 100 when standing unless I exert myself. I’m hoping that keeping active will continue to help build my stamina and I can get closer to being back to normal again. I have a ton more energy than I’ve had all year. Im keeping my fingers crossed!
I think some doctors say beta blockers can worsen pots because of the bp lowering effect they have. I tried propranolol but my adrenalin bursts kept coming through when it wore off so atenolol has been better due to longer lasting. I guess that’s why we have such low doses when we are able to take beta blockers.
How are you going weening off your atenolol Linds? I’m still taking the 6-8mg at night only but I’m finding my HR is going lower these days and I’ve started taking Zantac. Could be a coincidence.
honestly, getting off the atenolol has been very tough. i’m sure it’s not helped by the fact that we’ve had an unusually warm summer here. i’m also probably at 6-8 mg (i’m on 1/4 of a 25mg pill) which i take every morning.
i’m still having problems with tachycardia and adrenaline waking me up multiple times per night, and mornings are pretty rough. but once it starts to cool down, i may find it isn’t so bad.
I totally inderstand that! I live in Phoenix and have spent most of the summer inside, and planning on our move to a cooler climate in the next couple years. As soon as it got above 80 degrees, it would take me a few weeks to acclimate, then of course the temps kept creeping up to where I just try to stay indoors as much as possible. The heat is my worst enemy!
i didn’t realize you were in phoenix! that’s where i grew up and still have family. it’s too hot for me there during the summer – my family knows if they want to see me over the summer they have to come visit me.
i can completely understand how heat is your worst enemy, especially when you live in the desert!
Yeah I don’t think I’ll ever go off my 6-8mg (1/4 of 25mg like you) but I understand your need. I’ve already had my children. I have a slight mitral valve prolapse and I think it helps with that. I just don’t like that my heart rate at night when I take my atenolol is already under 60. I find though taking it at night stops the waking adrenal tachy through the night. I still have pretty yuck mornings but not as bad as when I wasn’t on the atenolol.
Ps. We have just had winter here in Australia and I’m dreading summer.
I wonder if my comments don’t show… I am sure ur results will come back with mast cell as well the reader with lung and cough from smells.
Congrats on ur wedding! I think sitting down during the piem reader is perfect!
Hi Jennifer, I can see you comment. I think I’m the other person you mentioned with the lung and smell issues. I haven’t seen anyone about mast cells yet but I do know h1/h2 help me 🙂
thanks! it will be interesting to see what the test shows!
I’m glad I came across this!!I just picked up my first batch of chromolyn. I have to take it orally too. I’m really bad when it comes to a gag reflex. I wanted to know how it tasted before I actually tried it. My dr said I could take it in juice, so did the pharmacist. I guess I’ll get something that has a strong flavor. I’m taking it bc of my side affects from my xolair injections…getting those bc I have hives from an unknown source. I’ve been gettin fn them for about 2 years now. For the past 6 months or so, I’ve had severe fatigue. And waking up, it’s like trying to wake up from anesthesia. It’s such a horrible fight and sometimes takes 2 hours to wake up in the am. Ugh. I’m hoping this works. There’s nothing like walking around, scratching your boobs and bottome of ur feet constantly (my worse areas for hives) and not being able to wake up from a coma like sleep. Ugh.
Hi Gerry! Thanks for your comment. I don’t like the taste of cromolyn, but don’t notice it when diluted. Have you been tested for mast cell activation disorder (MCAD)? Hives and fatigue aren’t uncommon in MCAD.
Hope the cromolyn helps!
Hi Lindsay, thanks so much for putting up this blog. I was just prescribed Oral Cromolyn toady for the same reason. I am writing this to you with a throbbing headache so after reading that this can cause even more headache I am a bit disappointed. Are you still taking Cromolyn? and how did you deal with the headaches? Thanks so much
Hi, thanks for your comment! I have (hopefully) good news – the headaches eventually got better. I experienced a lot of side effects with cromolyn in the beginning and had to start very slow, but eventually the side effects got better. Cromolyn has been very helpful, so it was worth it for me to stick with it. I hope it gets better for you soon!
Did anyone try quercetin before cromlyn?
I tried quercetin and had a mild reaction to it, nothing serious. I’m glad you mentioned it though, as I tried it a long time ago and it’s probably worth another try!