AshleyPooh Posted July 20, 2013 Report Share Posted July 20, 2013 Hi all, I thought I'd ask this question because, frankly, I'm tired of running into a medication that gives me unexpected problems. The other day, I tried taking part (not even a whole tablet) of a muscle relaxant to help my muscle knots caused by Myofascial Pain. I took it before bed, went to sleep, and the next day, my heart was flopping so badly it became extremely distracting. I know they are called premature beats, but flopping feels more how the sensation feels. It actually got a bit scary, because my heart was flopping , not just once in a while, but multiple times in a row. At least a few times it flopped like 3 times in a row, you can imagine how that felt! If my sonogram hadn't come back saying my heart looked good, I would have taken myself off to the hospital.I'm almost positive that it was the muscle relaxant, and .. will never take that crap again. But I wanted to know what other medications out there bothered YOU. Anything out there drop your blood pressure? Anything cause tachycardia or heart flops? Let me know! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted July 20, 2013 Report Share Posted July 20, 2013 I took some melatonin for insomnia and despite being on florinef at that time, my systolic BP was in the 80's. It self corrected though within 24 hours, as the melatonin wore off. Another med that lowered my BP was nighttime advil. I blame the benadryl for the effect, not the advil itself...or it may be the combo, not sure. I've taken advil and benadryl separately though before and had no problems?!The other things I stay away from are basil and garlic - even smelling these makes my BP drop.By the way, despite my POTS , my BP is stable. I had a couple of months when my BP was all over the place, but it was the meds I was on that made things worse for me. I've always had lower than "normal" BP (my normal is around 100-110/60-70) but I have no problems (like dizziness or lightheadedness) because of that.Hope this helps,Alex Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 20, 2013 Report Share Posted July 20, 2013 Hi Ashley,With any medication, it's really trial and error. Hate to say that but it's the truth. What medications help your symptoms, may make another POTS Patient worse. Whenever a medication makes you feel worse or you have an allergic reaction to it, be sure to write that information down somewhere. It's very helpful to have this information with you when you visit a new doctor.The doctors would not give my son a prescription for a muscle relaxer. I beg for one but they explained it might make his low blood pressure go even lower.The medications that are the worst and cause the most problems for my son are steroids like prednisone, breathing treatments, and many prescription cough syrups. Sorry you had the bad reaction to the muscle relaxer. Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted July 21, 2013 Author Report Share Posted July 21, 2013 Yeah benadryl actually is supposed to make your blood pressure go up a bit, but with me it always lowers it!As for cough syrups, i can't take anything that could make me restless, like the sudafed. it is a nightmare. it keeps me awake and makes me nervous.As for the muscle relaxants, definitely made my bp a bit worse, but the heart palps were really the main issue.Yeah, trial and error ***** But that's why i guess we only take what's necessary, and not random things folks might suggest would do us some good. Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 21, 2013 Report Share Posted July 21, 2013 I totally agree with looneymom...it's trial and error for each of us. I have MCAS in addition to my POTS and EDS, so beta blockers make me unable to get air and like a zombie, while they help many others with POTS. I can take benadryl just fine but it sounds like Alex can't. I am fine on short low doses of steroids but we tried a long term steroid treatment for me that caused me to have the beginnings of something called Stevens-Johnsons SYndrome which is seriously bad, so I know I can only take these in limited quantities. Excedrin is out of the question anymore for a backup migraine reliever because it has way too much caffeine for me now. I've never been able to take muscle relaxers as they knock me out for days at a time on half a dose but pain meds have almost no effect on me...Lortab, oxycodone, morphine don't alter my state or my pain at all, so they had to give me delaudid in the hospital for my lodged kidney stone. I've never done recreational drugs but they were looking at me crooked because they had given me soooo much morphine and phenergan and nothing was getting better. I'm sure they thought I was a narcotic addict but it's just how my weird body processes meds. Interestingly, I now know (but didn't then) that folks with EDS are often "immune" to pain meds particularly morphine. I know that doesn't really narrow it down for you but I hope it makes you feel not so alone in the quest to find things that work. And, I do hope you find something that works. There is a book called "The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief" by Clair Davies which explains how to do self message/release of trigger points. YOu can find at on Amazon for a reasonable price (under $20). It helps explain what myofascial pain is and how you can work your trigger points yourself including very good illustrations of all the muscle groups in the body and where you will likely find trigger points in each, how to work them, and what kind of referred pain each might be causing. Quote Link to comment Share on other sites More sharing options...
Suthrngal Posted July 21, 2013 Report Share Posted July 21, 2013 I reacted terribly after my pot started to CT dye But did okay with the MRI dye. I react to Zyrtec and Allegra. I have been told by one pots friend that her doctor mentioned that no time release medicine is acceptable for pots patients. Before six years ago I had no negative reactions to medications whatsoever. Now it seems that I react to every other medication I try. Hydrocortisone after one pill had a horrible reaction. Racing heart ER. Do others have problems with hydrocortisone? Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted July 21, 2013 Report Share Posted July 21, 2013 I knew I forgot some meds ...I tried so many.- metoprolol made me extremely dizzy because it lowered my BP a lot,- celexa and lexapro made my tachy so much worse and while taking one or the other of these 2 my BP fluctuated like crazy but stayed on the high side,- tramadol and stemetil (prochlorperazine) gave me horrible tachycardia and I ended up in the ER.Suthrngal, I took cortisol (hydrocortisone) for a few weeks as one of my drs suspected my adrenals were not working properly (turned out he was wrong) but had no issues with it. Alex Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 21, 2013 Report Share Posted July 21, 2013 Hydrocortisone eventually causes a bad reaction for me....swelling like I've been stung by bees, burning and red skin, severe pain in my bones. But it doesn't happen on the first pill. It happens a few days into treatment. Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted July 22, 2013 Author Report Share Posted July 22, 2013 I found out just today, that narcotic pain medications apparently are on the list of ' do not take'. I've been having heart flops all day! so annoying!Ah yes tramadol. i tried the time release kind once, called Ryzolt. wound up breaking out in a rash on my back, and feeling bug eyed for the entire day until it was out of my system!I sure hope I don't react badly to hydrocortisone. I am wanting to get my adrenals tested, and if i need that medicine, to have problems from it would be terrible!I did the saliva test for cortisol a year or so back. My morning cortisol was 3 ( range 13-25), while the rest of the day was normal.The problem with that test, is that i had been taking prednisone for a few days b/c of sinus swelling, and am not sure how it affected those results ( i was off of them about a day or two before the test) . didn't realize that it would affect it until later :/ Not sure if it raised my cortisol, or reduced it. I really need to get tested by the doc Quote Link to comment Share on other sites More sharing options...
pink1975 Posted July 22, 2013 Report Share Posted July 22, 2013 I had a bad reaction to gabapentin. Also, recently tried zoloft, I had taken it for years and stopped when I got pregnant with my second daughter. At that time I had no problems with it. Five days of vomiting and dizziness before I realized it was the zoloft. I have also reacted badly to vicodin. I am on tiny doses of the meds I can tolerate (xanax and metoprolol) and weirdly enough those tiny doses are just right. New meds freak me out, never know how I will react. Quote Link to comment Share on other sites More sharing options...
dpeeps Posted July 22, 2013 Report Share Posted July 22, 2013 I am exactly like Pink1975. I had horrible reactions to Zoloft (detailed in another post). I had a very bad reaction to "cocktail" of Fentanyl and Versed durning routine colonoscopy. However, I can tolerate small doses of Xanax. Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted July 22, 2013 Author Report Share Posted July 22, 2013 i wonder why anti depressants are so horrible for us? I tried to titrate onto a normal dose of Savella once, and was nauseous and vomiting, had to give up since i couldn't even stomach the smallest of doses. Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 23, 2013 Report Share Posted July 23, 2013 Hi Ashely,I wanted to mention that my son could not tolerate Gabapentin or Cymbalta. Cymbalta made his heart race and Gabapentin sent him down hill quickly. Don't be afraid to try new medications. Just remember to start low and go slow on raising up the dosage. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 23, 2013 Report Share Posted July 23, 2013 (edited) The only thing I dont suggest taking is 100% cocoa in large quantities Edited July 23, 2013 by corina medical advice Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 23, 2013 Report Share Posted July 23, 2013 (edited) Hey I hope your heart is ok now. Edited July 23, 2013 by corina medical advice Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 23, 2013 Report Share Posted July 23, 2013 Oh yeah...I forgot that I can't take lexapro or Paxil either. They make my POTS symptoms go all kinds of haywire. Quote Link to comment Share on other sites More sharing options...
corina Posted July 23, 2013 Report Share Posted July 23, 2013 Hey all, like Looneymom and Katybug mentioned: we are all different: what goes for one doesn't necessarily mean it goes for others as well. As you can see in my signature I'm on Paxil and are doing well on it. I'm on it to keep my hr in control. The octreotide I'm on works really well for me but I know others who cannot tolerate it at all. As I couldn't tolerate Florinef. Like others said it's trial and error! Unfortunately! Quote Link to comment Share on other sites More sharing options...
Zap Posted July 25, 2013 Report Share Posted July 25, 2013 Got a laundry list in my signature, but here's the rundown:SSRI/SNRI have all been horrible experiences (Zoloft when younger, Lexapro, Effexor). Talk about feeling lobotomized, tired, and hungry - AND making me feel depressed. Ugh. So many bad side effects - lowest dose, and given time to work through. Also TERRIBLE tapering off ones that were around for a while.Nortriptyline caused racing heart issues on the lowest dose. Wish it hadn't as it helped with migraines better than anything else so far.Propranolol worsens OH so even though it helped in some regards, I couldn't tolerate it. (It was used for migraines)Gabapentin increased appetite a bit on the lowest dose, with too much weight from other drugs causing gain it was stopped.Sadly, at this point, I feel best with nothing (which is to say I feel bad instead of worse). Still looking for something that might help without causing more harm, and I may have found a few new things to try. Quote Link to comment Share on other sites More sharing options...
spinner Posted July 25, 2013 Report Share Posted July 25, 2013 Ive been given Ativan which is the standard ER sedative type med, and it hypes me up like a monkey snortingcrack Quote Link to comment Share on other sites More sharing options...
pink1975 Posted July 26, 2013 Report Share Posted July 26, 2013 Ive been given Ativan which is the standard ER sedative type med, and it hypes me up like a monkey snortingcrackOMG, I just laughed so hard that I snorted! Thank you for the funny description, even though I am sure it wasn't funny at the time. Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted July 27, 2013 Author Report Share Posted July 27, 2013 Lol , spinner! That sounds rough. I've had that happen too, with savella. Was jogging in the middle of the night in my bathroom, singing ' she's a maniac' to myself. Mania (hyper,restless etc) has got to be one of the nastiest symptoms ever. Quote Link to comment Share on other sites More sharing options...
spinner Posted August 5, 2013 Report Share Posted August 5, 2013 Add NIACIN to my list.Research showed it helped people with anemia but a doc told me it can reallyscrew you up.Caution with that one. It made me sick. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted August 5, 2013 Report Share Posted August 5, 2013 Well its not exactly a medicine but remember this devil of a spice N U T M E G! Nutmeg is pure evil! Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted August 5, 2013 Author Report Share Posted August 5, 2013 Nutmeg, Hanice? What does it do? I have heard of idiots who tried to smoke it lol but I have never heard of problems from eating it? Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted August 5, 2013 Report Share Posted August 5, 2013 Yepp I drank it inside chocolate milk (100% cocoa) sent me to the hospital! First time I ever fainted! It has a highly toxic chemical called myrsticin. Quote Link to comment Share on other sites More sharing options...
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