OTC Meds?

[HappilyMe]

Hello!

Longtime lurker, first time poster and I hope I REALLY get some answers for this.

I'm a year into Post-Viral POTS and like most, it's been quite an adjustment going from relatively ok to feeling like a perpetual case of hot trash personified. I usually get pretty sick in the winter months with allergies, asthma, etc. This will be my first full winter with POTS and I am NOT looking forward to it.

My question is, are there any OTC meds that are relatively safe for POTSies? I've been kind of raw dogging my headaches, allergies and other ailments, not taking anything for it namely because I was afraid of the reaction there might now be. I'm even afraid to take something as seemingly innocuous as Tylenol for headache or Imodium for diarrhea. I used to take meds (Tylenol, TheraFlu, Imodium) in the past, no problem otherwise before realizing I had POTS or so I thought. 

I still am afraid of taking anything for anything but my desire for relief is overriding my fear. Yes, I know everyone is different but I'm at my wits end with all of this. 

 

[maggs]

I've had POTS for about a decade, and I don't have much of an issue with most OTC medications. I think it varies a lot person to person, but since I have MCAS as well and therefore a history of ulcers I just try to avoid oral NSAIDs personally (I'm fine with topical like Voltaren gel or injections of NSAIDs at my doctor). I used to have to avoid medications containing sudafed (that would make me even more tachycardic), but since being on Corlanor I haven't had any issues with it any more. Everyone is different, but Corlanor was life-changing for me at managing the tachycardia and other symptoms. This summer was the first summer I bothered trying to spend a little time outside in years (I don't do well in the heat with POTS) and I not only did well, I didn't notice any major issues later (like increased fatigue). But unfortunately with POTS it does mean a lot of trial and error with a lot of stuff (including OTC meds) before you'll know what you can tolerate and what you can't. It sucks playing trial and error with your body, but for me it was the only way to know what I can tolerate and what I can't. It was worth it in the end knowing that most medications don't aggravate my symptoms. Not sure if any of that helps, but I wanted to take a moment to reply. 

[Pistol]

Hello @HappilyMe - welcome to the forum! I too have to be careful with certain OTC's but for allergies I do well with Loratadine ( Claritin ) and I also can use nasal sprays such as saline or Flonase for stuffy nose complaints. I have to avoid any inhalers or cold medicine that has decongestant in it. I cannot take Motrin due to GI problems from dysautonomia but I can take Tylenol ( although it seems useless for fevers ). 

You mention diarrhea - if you suffer from this you may have dysautonomia caused IBS. I have this and it comes and goes. When in a bad spell of it there are meds I take prescribed by my GI specialist, but I do not know of anything OTC. You may want to see a gastroenterologist if you have a lot of diarrhea, GERD or other problems. 

[HappilyMe]

12 hours ago, maggs said:

I've had POTS for about a decade, and I don't have much of an issue with most OTC medications. I think it varies a lot person to person, but since I have MCAS as well and therefore a history of ulcers I just try to avoid oral NSAIDs personally (I'm fine with topical like Voltaren gel or injections of NSAIDs at my doctor). I used to have to avoid medications containing sudafed (that would make me even more tachycardic), but since being on Corlanor I haven't had any issues with it any more. Everyone is different, but Corlanor was life-changing for me at managing the tachycardia and other symptoms. This summer was the first summer I bothered trying to spend a little time outside in years (I don't do well in the heat with POTS) and I not only did well, I didn't notice any major issues later (like increased fatigue). But unfortunately with POTS it does mean a lot of trial and error with a lot of stuff (including OTC meds) before you'll know what you can tolerate and what you can't. It sucks playing trial and error with your body, but for me it was the only way to know what I can tolerate and what I can't. It was worth it in the end knowing that most medications don't aggravate my symptoms. Not sure if any of that helps, but I wanted to take a moment to reply. 

Thank you so much for taking the time to reply! I just hate having this Catch-22 feeling, I'm in pain but scared to take what I USED to know works in fear of bringing MORE pain. I worry often the repercussions of letting the pain go unmitigated in the long run.

[HappilyMe]

9 hours ago, Pistol said:

Hello @HappilyMe - welcome to the forum! I too have to be careful with certain OTC's but for allergies I do well with Loratadine ( Claritin ) and I also can use nasal sprays such as saline or Flonase for stuffy nose complaints. I have to avoid any inhalers or cold medicine that has decongestant in it. I cannot take Motrin due to GI problems from dysautonomia but I can take Tylenol ( although it seems useless for fevers ). 

You mention diarrhea - if you suffer from this you may have dysautonomia caused IBS. I have this and it comes and goes. When in a bad spell of it there are meds I take prescribed by my GI specialist, but I do not know of anything OTC. You may want to see a gastroenterologist if you have a lot of diarrhea, GERD or other problems. 

@Pistol Thank you for the welcome! It's been a ride, one I would like a refund for cuz I didn't ask for this lol

 

I've always had GI trouble ever since I was a kid, having my appendix removed at 4, blockages at 12, 16 and 20. I was ruled out having IBS be it C or D years ago but of course that was Pre-POTS. I know Imodium worked for me back then but then I saw they changed the formula and that it COULD cause serious heart problems and/or death and ask your doctor if you have a history of abnormal heart rhythm. I was like "Great, there's something for the good ole panic to have fun with." I had an appointment with a GI earlier this year for gastric testing but had to cancel it because even with insurance, the test was too rich for my blood.
 

Theraflu, Tylenol and Sudafed used to work WONDERS for me before I got sick but I am not sure if it still does without much grief. I also used to take Imitrex for migraines but my neuro is not wanting me to do it anymore because of heart complications. I'm just tired of being in pain, is all. 

[Pistol]

32 minutes ago, HappilyMe said:

Theraflu, Tylenol and Sudafed used to work WONDERS for me before I got sick but I am not sure if it still does without much grief.

Oh my, I remember crawling on the floor after taking theraflu YEARS ago, before I even HAD POTS! I could never really tolerate it, and once I took a decongestant after my POTS diagnosis and I ended up in the ER. And another time I took a puff of an inhaler for cough and I thought I am going to die! My heart seemed to want to jump out of my chest! I can only conform your caution about OTC medications, you should always be close to an ER if you are going to try it - at least that was my experience!

[maggs]

I should add that I work with a dietician that is familiar with POTS/MCAS. She swears by Heather's Tummy Fiber for diarrhea and constipation in POTS (and generally). I've used it on and off over the years and it does help, I'm just terrible at remembering to use it regularly (which is what you have to do for it to be most effective). Maybe that would be worth a try? Her instructions for me were to start with a small amount mixed in water and increase the dosage every 3-7 days as tolerated until my GI symptoms resolved. It's funny how Heather's helps both diarrhea and constipation, just at different dosages/amounts. 

Also, maybe you could try using, say, Tylenol when you next need it but at a lower dosage than is usual? Like a child's dose? I wonder if that could help you in terms of trying it out without as big a risk to making pain worse. 

The only other thought I had was palmitoylethanolamide. I don't know if it's been used in POTS patients much, but it's a mild OTC supplement that can help manage pain. My dad has been using it for years and it's the only pain med he can tolerate. I've taken it a few times and have never had a reaction, even when my symptoms have been bad. 

I know it's tough figuring out how to manage it all, especially in the beginning. But you'll get there in time. Hang in there. 

 

[HappilyMe]

5 hours ago, Pistol said:

Oh my, I remember crawling on the floor after taking theraflu YEARS ago, before I even HAD POTS! I could never really tolerate it, and once I took a decongestant after my POTS diagnosis and I ended up in the ER. And another time I took a puff of an inhaler for cough and I thought I am going to die! My heart seemed to want to jump out of my chest! I can only conform your caution about OTC medications, you should always be close to an ER if you are going to try it - at least that was my experience!

WOW! Never in my whole 34 years of life has that happened to me. I am so sorry that happened to you!

Thankfully I live around the corner from a hospital but after all my frequent flyer miles over there, they might not wanna see me lol

[HappilyMe]

4 hours ago, maggs said:

I should add that I work with a dietician that is familiar with POTS/MCAS. She swears by Heather's Tummy Fiber for diarrhea and constipation in POTS (and generally). I've used it on and off over the years and it does help, I'm just terrible at remembering to use it regularly (which is what you have to do for it to be most effective). Maybe that would be worth a try? Her instructions for me were to start with a small amount mixed in water and increase the dosage every 3-7 days as tolerated until my GI symptoms resolved. It's funny how Heather's helps both diarrhea and constipation, just at different dosages/amounts. 

Also, maybe you could try using, say, Tylenol when you next need it but at a lower dosage than is usual? Like a child's dose? I wonder if that could help you in terms of trying it out without as big a risk to making pain worse. 

The only other thought I had was palmitoylethanolamide. I don't know if it's been used in POTS patients much, but it's a mild OTC supplement that can help manage pain. My dad has been using it for years and it's the only pain med he can tolerate. I've taken it a few times and have never had a reaction, even when my symptoms have been bad. 

I know it's tough figuring out how to manage it all, especially in the beginning. But you'll get there in time. Hang in there. 

 

I've never heard of Heather's Tummy Fiber. I'll look into that. I was so bummed not being able to have fiber like I used to so this might help me out.

I used to take 1000mg of Extra Strength Tylenol or the kind that had the quick release but I ain't touched nothing since late 2020 when the POTS first started to rear its ugly head.

I'm trying my best to hang in there. Thank you for your response!

[MikeO]

Only Tylenol product that i can handle is the 8hr extended release formula (regular tabs are really hard on my stomach) and to be honest i have not seen much relief using the drug.

[HappilyMe]

13 hours ago, MikeO said:

Only Tylenol product that i can handle is the 8hr extended release formula (regular tabs are really hard on my stomach) and to be honest i have not seen much relief using the drug.

For the most part Tylenol worked for me when I took 1000mg and the fast acting ones because I couldn't lay down at the job I had at the time. I took it but I never really noticed anything, I guess because I couldn't get my nerves to settle and trying to deal with all the other POTS symptoms back then.

Thank you for your response!

[GasconAlex]

Something that helps the pots tachycardia and reduces some of the other symptoms are compression stockings. Not sexy, horrible when hot but they reduced my tachycardia by about 20bpm on standing which really helps with everything else. Since they are not pharmaceutical you only have to put up with wearing them. Get them properly measured and make sure that they are at least thigh high whilst being certified as class 2 compression (not sure if the USA uses the same grading system)

[CallieAndToby]

13 hours ago, GasconAlex said:

Something that helps the pots tachycardia and reduces some of the other symptoms are compression stockings. Not sexy, horrible when hot but they reduced my tachycardia by about 20bpm on standing which really helps with everything else. Since they are not pharmaceutical you only have to put up with wearing them. Get them properly measured and make sure that they are at least thigh high whilst being certified as class 2 compression (not sure if the USA uses the same grading system)

I concur, compression garments are very helpful. 

[HappilyMe]

On 12/4/2021 at 5:13 AM, GasconAlex said:

Something that helps the pots tachycardia and reduces some of the other symptoms are compression stockings. Not sexy, horrible when hot but they reduced my tachycardia by about 20bpm on standing which really helps with everything else. Since they are not pharmaceutical you only have to put up with wearing them. Get them properly measured and make sure that they are at least thigh high whilst being certified as class 2 compression (not sure if the USA uses the same grading system)

Sorry for the late reply. I have been trying to get my stockings since the beginning of the year with no success. I'm sure that would help in when my POTS acts a fool.

However, I was more looking for the cold/flu type OTC meds due to fear of increased tach or all around crumminess. 

Thank you for your response!

[HappilyMe]

On 12/4/2021 at 6:34 PM, CallieAndToby22 said:

I concur, compression garments are very helpful. 

I haven't had the (dis)pleasure of using them yet. I would LOVE to for my tach, which takes a lot out of me, especially when my asthma and allergies come out to play.

I just wanna feel better when mountain cedar pops up-which I never used to have before POTS and decides it's time to attack me and my nasal passages or when I have headaches and I'm afraid to touch what I know used to work before I got sick. I hate that four letter phrase..."Before I got sick." 

Thank you for your response!