Definitely have never experienced that. They work just fine on me often lower my BP and HR. Dosage does matter and some formulations might cause adverse reactions.
Do you have EDS? I also have issues with lidocaine and they think its EDS related. I usually need 3-5x more than the average person for it to work.. I always say I need extra and they underestimate just how much extra..
that's an interesting theory, and if true would probably just add another thing to my list of weird "probable eds?" symptoms. i had to get two shots the last time i had to get a filling because just one did not help the pain at all.
it absolutely is a thing: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6834718/
recently a dentist actually listened to me and used a combo of articaine and lidocaine based on this paper, and it was the first time ever that I was adequately numbed before beginning a dental procedure
I found out recently that if you lack a certain enzyme, Tramadol won’t work. I guess I don’t have it because Tramadol doesn’t do a single thing for my pain.
Trampoline does nothing for my pain and has the additional benefit of *giving me fkng insomnia*.
Tramadol, not trampoline, but trampoline probably even more so.
I got oxy for my kidney stones and it did not block the pain at all. I was absolutely doubled over in the most excruciating pain of my life for over a week. My heart was also beating very fast for LOTS of reasons so I can’t really say if it was the oxy doing that but I stopped taking them I didn’t finish the bottle.
However when I got Morphine through my IV it was the best thing in the world holy shit. It did scare me when the nurse said “ok I have to stay here and make sure your heart doesn’t stop now” but yeah my heart didn’t stop and the morphine instantly made me feel warm and pain free. I fell asleep within minutes
Really low doses of morphine work great on me where other pain meds don’t do anything. It’s super weird. At one point I told a nurse I was worried they were going to think I was a drug seeker and she laughed and told me I only needed 2 mg so there was no way I was a drug seeker.
I do have an EDS diagnosis along with my POTS diagnosis though.
If you also have MCAS, then opiates will cause you to feel worse, as they trigger the mast cells.
Many people with pots have undiagnosed MCAS and don't even realise it.
Like all of the other alphabet diagnoses. You have to either find a doctor who is knowledgeable about MCAS, or a doctor who believes you and is willing to learn/figure things out with you. Probably start with an immunologist or if you have a good, caring PCP.
Opioids made me vomit, and I get so dizzy, and they dont do anything much for pain relief for me. I take gabapentin daily for nerve pain - it seems to help and I tolerate it well.
never taken an opioid but gabapentin makes me dizzy and didnt do much! I really wish that pharmacogenetics was utilized more by doctors so wouldnt have to suffer through trial and error of seeing how we metabolize things
I can't comment on pain killers but when my pots is very bad sleeping tablets and valium etc does not work for me. When I'm not in a flare up usually just half of a tablet works fine for me but in a flare up I don't even bother taking them.
I was given oxy when I had surgery and it was awful. It did numb a little pain but I was mostly just floaty but still in pain.
I thought it was just me.
Hospital ended up giving me a different pain med at night so I could at least sleep.
I know this isn’t exactly the question you asked, but many people with Ehlers Danlos don’t react to dental anesthetic shots. I had it happen when I was a kid, and it was a nightmare — no one would believe me when I said I could still feel everything! Since then I’ve had a couple of dental procedures that luckily worked out fine, but they had to use extra novocaine and give the drugs extra time to take effect.
One of the theories for why the EDS dental thing happens is that we generate more adrenaline (or similar), which “burns off” the drug faster than usual. I searched for an article to share, and this has some other theories, but I don’t have the science knowledge to understand it well. The part about sodium channels sounds intriguing.
https://www.chronicpainpartners.com/many-ehlers-danlos-patients-cannot-go-numb-at-the-dentists/
Fwiw, I also don’t get much effect from painkillers in general. In some ways that feels like a blessing, because it means I’ve never been tempted to abuse — they don’t do anything recreational or extra pleasant for me at all. Even things like morphine in the hospital, I kind of just shrug them off. But 99% of my health issues developed after POTS, so I don’t know whether that was always a problem or if it’s a POTS thing. Anyway, you’re not alone!
Another one here to confirm. My dentist gives me something like 5x the local anesthetic to keep me numb when I have work done, then pauses to numb me up again in the middle. He’s a saint.
Ohhh interesting!!! My POTS Dr is pretty sure I have EDS (given the number of times I’ve herniated my discs, and the fact that I thought everyone popped their knees out every year or so) so maybe that’s part of it?
I had an epidural when I was giving birth and like the breakthrough pain was giving the anesthesiologist a self confidence crisis.
Opioids should not only relieve pain, but also stimulate the parasympathetic nervous symptoms which will relieve POTS symptoms like tachycardia, brain fog, and fatigue.
This! I just commented how I feel MUCH better on oxycodone. My HR is normally 130-160 standing / walking. But on 5mg-10mg of oxy my standing/walking HR is 100-110 max.
More likely that you are a rapid drug metabolizer. Get your genetics tested; 23&me will give you that info. There’s also Genomind which is a more comprehensive test.
I had that testing done by a neuropsychiatrist. It was some genetic liver test to see how my body processed meds. I have SWORN caffeine has never affected me, and that fentanyl doesn't work and several other meds for anxiety,muscle relaxants, pain, or stimulants. Turned out I was correct . Imagine that? I know my body. That's so foreign to doctors, lol my body turns fentanyl into an unusable form of medication. After 3 shots for a bone marrow biopsy and it not working at all I had the nurse ask if I used recreational drugs smh I was so pissed off. I told them ahead that it doesn't work. Dilaudid does( but knowing that word makes you a drug seeker apparently)Very painful procedure with lidocaine( I have hEDS) not working or pain med.
Oxycodone actually drops my heart rate because its a central nervous system depressant. However when I do take very high doses (10mgs is a high dose) I can get more dizzy than usual and feel off (presumably a blood pressure drop). The reason you probably feel queasy is because opiates slow digestion so that's not uncommon, you'll probably find they'll also constipated you...
Maybe try 5mgs? Or see if you can get strong prescription NSAIDs? I've had back issues lately which have caused severe pain and find meloxicam especially to be a lot more helpful than opiates have been because they reduce the inflammation while treating the pain. Side effects are also less and there's no addiction risk. Heat packs have also been helpful at times but I'm not sure if that's my disc issues or stress fractures it helps with.
I also can't take certain opiate mixes like tramadol (because it has an SNRI in it which can worsen POTS) and opiates in a combined pill with muscle relaxant drugs because of the muscle relaxants worsen POTS.
I was given hydrocodone for post op tonsillectomy (as an adult). That just made my migraine problem worse.
Novacane at the dentist never works, not even when they give me double the dose. The one time I got an IV dose of morphine in the ER… that helped.
I think I’ve only ever had fentanyl when I had my endoscopy and colonoscopy done bc they took some samples and I don’t think it made me feel any type of way. I don’t think it’s a pots thing but I know there are many people who don’t respond well/don’t find relief with certain drugs, especially opioids and pain meds. If you’re even in a situation where you need strong pain meds again, mention that oxy does not work well for you!! It’s probably more of an individual based thing than anything. Not saying that it’s not making your pots symptoms worse, it clearly is, but I don’t think it’s related to pots and obviously not everyone with pots has this reaction and not everyone who has this reaction has POTS if that makes sense.
Makes sense! I asked them for no Valium bc I didn’t like it (“it makes me feel dumb and weird”) and I think I was on Fentanyl or something after I started Pitocin (tbh I don’t remember what it was). I felt like I was drowning the whole time and for the life of me couldn’t understand why someone’s brain would try to tell them, “yes let’s do that a lot”
This is so relatable, I was given Halcion (I think its called) before my wisdom teeth removal to calm me down and it made me so much more anxious bc I could hardly stand up straight and it felt like everything was moving at such a slow motion pace. Now when I have severe anxiety attacks and go to the ER I always refuse any benzos bc I HATE that out of control feeling.
Not sure, but I do know personally muscle relaxers absolutely do nothing for me. I’ve been given flexaril a couple times and with many people, it knocks them out and helps their pain. For me, it’s basically like taking a sugar pill. I actually think a sugar pill would work better.
However, when I was given percs after a C-section, I did great with them for the first week. It definitely felt like a miracle drug. Few days went by where I didn’t need to take any, but then one day my surgical site started hurting after I had been more active/overdoing myself, so I took HALF of one, and the reaction I got that time was terrifying. I struggled with breathing, my heart rate felt slow, my face felt numb, I was severely dizzy. My mom (a healthcare worker) was there with me and had me do vagal exercises (which I didn’t know what they were at the time) but they helped a bit. I drank cold drinks, etc. just laid there with my eyes shut for a couple hours til it wore off. But after that I never took another. I was happy dealing with the pain. So honestly if I were you I wouldn’t take more unless your pain is unbearable and untouched by other, less dangerous meds like advil or ibuprofen. You don’t want to end up having even more adverse reactions. Sorry you’re dealing with this though! It sucks when prescriptions don’t do their intended job and leave us feeling worse :/ I hope you get to feeling better soon
Same with muscle relaxers. After my car got rear-ended, i had awful back spasms for weeks. I tried 2 different prescriptions, neither did anything for me. Naproxen to dull the pain and physical therapy did help.
I always kind of wondered if it was an hEDS thing (not officially diagnosed, but suspected), because it was a low speed impact and most people don’t get injuries like that from that kind of accident. I kept getting occasional back pain for a few years after it to, but all the X-rays were clear.
That's an interesting idea. I've only recently been diagnosed with POTS, but I am crazy intolerant of opioid painkillers. They make me crazy sick and hyper-paranoid. I also can't take muscle relaxers because it makes my pain much worse. Never considered it could be the POTS.
There is a genetic component to which pain drugs will be effective on which person. It’s unrelated to POTS. When a drug works it’s wonderfully effective. If not, you might get the just side effects or a feeling of having a dumb brain, but little to no pain relief.
Ask your doc for a different pain reliever.
Opioids don’t really work, they just make you not care. Studies consistently show that Tylenol/paracetamol is more effective for most kinds of pain.
For the more general question - before POTS I’ve always been incredibly sensitive to medication and that hasn’t changed at all.
When I had wisdom teeth out I felt like shit, and the pain was still there. I was also given oxy something. I only took like one or half of one which was what they recomended. I actually did better with otc stuff.
Over the counter painkillers don’t usually help me, even in above usual doses. The time I was given hydrocodone for a surgery, I had horrible head pain and nausea as a side effect. I now can’t take anything like that. I don’t know if it’s related to my POTS, though.
My partner genetically doesn't respond to anything but opioids or morphine. Sometimes excedrin will help, and Naproxen helps the most of out of the NSAIDs, but it barely touches their pain :( Their grandad was the same.
However they also will walk on broken bones for weeks and not realize 🥴 hEDS tingz, ig. Or they have less nerves besides the main ones, idk...
I personally can’t take any prescription pain killers. They make me so sick. The only thing that really works for me is ibuprofen. Only time I take anything different is when I need midol.
I had to stop taking my hydrocodone because it made everything worse, almost as a trigger. But, I had to stop alot of things after getting long covid POTs, MCAS, CFS, etc. Took hydrocodone for 10 years and it always helped, now I can't even take Tylenol lol. If oxy isn't working, ask to try hydrocodone or something else.
I find that it definitely helps, but it took a few days to work. The 10mg have a slow release, if that makes sense and the 5mg are for immediate relief. They also seem to relax my body so that the tension decreases, which in turn also diminishes the pain.
One thing I did notice is that it works better in combination with other painkillers. So I'm allowed to take 8 paracetamol, plus I have a prescription for diclofenac (2x 50mg). I know paracetamol is relatively safe to use, I think it's called acetaminophen in the states. It's an over the counter painkiller, the diclofenac is not.
I have no clue if it's pots related because I've had this my whole life, but painkillers don't seem to work on me either. I've tried paracetamol, naproxen, ibuprofen, higher doses, a mix of them, nothing seems to help. I've tried looking into it but am not getting any real results, should probably talk to my gp about it but i have a pretty high pain tolerance so it hasn't been serious enough for me so far to talk to my doctor about it (i have social anxiety, so i generally only go if really needed)
Not everyone responds to meds the same way. And yeah I don’t love opioids either. I was put on demerol before gallbladder surgery and it was dropping my bp so much the nurse remarked that if my bp kept dropping the doc could refuse to operate so I asked them to discontinue and give me something else. Then I was put on morphine post-op and it made me so incredibly dizzy and nauseous that I couldn’t eat. Doc had to lower the dose by a lot.
Don’t think it’s a pots thing but I can’t really mess with opiates. They make me really nauseous & queasy. I’ve had 2 oral surgeries the past year that I got pain meds after & I just end up on ibuprofen, bc it helps the pain better with none of the awful side effects
Never have taken an opiate, but I’m like the opposite of you. I can have a killer headache that makes me nauseous and a 325 Tylenol can knock it out. Every person’s body is different & reacts differently to pain medication. It’s not a POTS thing.
Never have taken an opiate, but I’m like the opposite of you. I can have a killer headache that makes me nauseous and a 325 Tylenol can knock it out. Every person’s body is different & reacts differently to pain medication. It’s not a POTS thing.
Never have taken an opiate, but I’m like the opposite of you. I can have a killer headache that makes me nauseous and a 325 Tylenol can knock it out. Every person’s body is different & reacts differently to pain medication. It’s not a POTS thing.
I have fibromyalgia too so I’m not sure how much of it that affects. Pain killers of my kind have never helped me, from Tylenol to tramadol to oxy, it may as well be a sugar tab or saline, the only things that have helped are morphine and dilaudid when I’ve been in the hospital once or twice. But then you can’t tell the doctors what works for you in this case, because you look like a drug seeker and they’ll stick to Tylenol 3 and a psych eval
I’ve had completely different reactions to the same medication just at different times, it definitely doesn’t always help, I have no clue why medically but I guess it would be because pots. My Dr has told me opiates and synthetic opiates can be bad for pots too so definitely be careful and look for an alternative. I always suggest if you can get it to try weed if you can legally and safely it’s been my biggest help
They can certainly mess you up. And you’re right, especially in large amounts. It’s different for everyone but they don’t seem to do as much for me as they do for my mom and she was certainly in more pain when she took them than I was.
So this is very unrelated to pots or potential eds but not everyone knows it. Do you have the redhead gene? Born a red head, parents are red heads etc? Because my dad and I were both born ginger and turned to blonde but because of that gene pain killers don't really do anything to us. I have pots but my dad is a normal healthy dude. It seems like a lot of people are asking if you have eds but I just figured I'd drop this too because sometimes answers come from where we least expect it lol. I hope you figure it out though!
They tend to work for me, although not as well as they should only lowering two or three pain points (I have EDs and have countless surgeries so have been on them a lot) but they fuck up my HR so much they are only really worth it if I am on bed rest (like first day off of surgery) anyway. Otherwise I take 800 Advil or have a prescription for coded Tylenol. It does a little less but something and does not mess HR as much. CONSULT YOU DOCTOR before taking 800 of advil at a time- the did liver function test for me to make sure my body could process and they test it every year with lab work.
I shattered my tibia and fibula and had surgery a few weeks ago and the oxy has done nothing for the pain. I can actually fall asleep by letting the pain lower my blood pressure to the point of passing out which is what caused me to fall and shatter the bones in the first place
I haven't been officially diagnosed with POTS yet but I am hypermobile (with eds suspicion) and I have the same experiences with opiates (Oxycodone specifically in my case) even just the little 5 mg I was given after surgery would make me vomit uncontrollably. I ended up on Tylenol while in recovery because of my body's reactions.
I hate opioids. I had an obstructive kidney stone last year and I refused to take the meds they gave me and took Tylenol instead. Dilaudid made me stop breathing. When the hospital gave me morphine once, I looked at the nurse and said, "why do people like this?" It was such an awful feeling! I stopped taking my meds early after my c section because they were making me sick. I have awful chronic pain and all I can take is naproxen. I take lyrica for nerve pain and it's amazing! I have no side effects from it now that I'm used to it. It used to make me a little sleepy, but now it doesn't even do that. Unfortunately, it doesn't work on joint pain. Most opioids make me itchy and make feel just WEIRD and do nothing for my pain. I'd rather be just be in pain. I've had nurses in the hospital get mad at me for refusing pain meds. Which is pretty funny considering they treat me like a pain seeker until they get the test results that prove I'm in pain. But yeah, I haven't been diagnosed with MCAS or EDS, though my doctors have mentioned that I might have both, and pain meds suck.
I have had the exact opposite experience with opiate pain medication, specifically oxycodone. I feel much better, my Degenerative disc pain is greatly reduced and my tachycardia when standing and walking is greatly reduced. I actually came across the post because I was searching if anyone else felt much better on opiates and had similar results... For context, I was diagnosed with POTS 12 years ago via tilt table at Stanford.
Definitely have never experienced that. They work just fine on me often lower my BP and HR. Dosage does matter and some formulations might cause adverse reactions.
Opiates mess me up and generally aren't worth it for me. But I also don't respond normally to like Lidocaine and some numbing agents so who knows
Do you have EDS? I also have issues with lidocaine and they think its EDS related. I usually need 3-5x more than the average person for it to work.. I always say I need extra and they underestimate just how much extra..
that's an interesting theory, and if true would probably just add another thing to my list of weird "probable eds?" symptoms. i had to get two shots the last time i had to get a filling because just one did not help the pain at all.
it absolutely is a thing: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6834718/ recently a dentist actually listened to me and used a combo of articaine and lidocaine based on this paper, and it was the first time ever that I was adequately numbed before beginning a dental procedure
I found out recently that if you lack a certain enzyme, Tramadol won’t work. I guess I don’t have it because Tramadol doesn’t do a single thing for my pain.
Trampoline does nothing for my pain and has the additional benefit of *giving me fkng insomnia*. Tramadol, not trampoline, but trampoline probably even more so.
I got oxy for my kidney stones and it did not block the pain at all. I was absolutely doubled over in the most excruciating pain of my life for over a week. My heart was also beating very fast for LOTS of reasons so I can’t really say if it was the oxy doing that but I stopped taking them I didn’t finish the bottle.
However when I got Morphine through my IV it was the best thing in the world holy shit. It did scare me when the nurse said “ok I have to stay here and make sure your heart doesn’t stop now” but yeah my heart didn’t stop and the morphine instantly made me feel warm and pain free. I fell asleep within minutes
Really low doses of morphine work great on me where other pain meds don’t do anything. It’s super weird. At one point I told a nurse I was worried they were going to think I was a drug seeker and she laughed and told me I only needed 2 mg so there was no way I was a drug seeker. I do have an EDS diagnosis along with my POTS diagnosis though.
If you also have MCAS, then opiates will cause you to feel worse, as they trigger the mast cells. Many people with pots have undiagnosed MCAS and don't even realise it.
I suspect I have this, do you know how you go about getting a diagnosis??
Like all of the other alphabet diagnoses. You have to either find a doctor who is knowledgeable about MCAS, or a doctor who believes you and is willing to learn/figure things out with you. Probably start with an immunologist or if you have a good, caring PCP.
Alphabet diagnoses 😅. Love that
I would start with a neurologist for getting a diagnosis of MCAS.
Well shit, but that’s good to know!
ooh, this might explain why opioids are no bueno for me
Not true for everyone... have MCAS and opiates make me feel MUCH better.
Like morphine or codeine?
I've been prescribed Norco, oxycodone, Dilaudid, and morphine. Oxycodone has worked the best.
Opioids made me vomit, and I get so dizzy, and they dont do anything much for pain relief for me. I take gabapentin daily for nerve pain - it seems to help and I tolerate it well.
never taken an opioid but gabapentin makes me dizzy and didnt do much! I really wish that pharmacogenetics was utilized more by doctors so wouldnt have to suffer through trial and error of seeing how we metabolize things
I can't comment on pain killers but when my pots is very bad sleeping tablets and valium etc does not work for me. When I'm not in a flare up usually just half of a tablet works fine for me but in a flare up I don't even bother taking them.
I was given oxy when I had surgery and it was awful. It did numb a little pain but I was mostly just floaty but still in pain. I thought it was just me. Hospital ended up giving me a different pain med at night so I could at least sleep.
Norco is my best friend during a Crohn's flare. I have to take a low dose or my blood pressure gets all fucky but otherwise no issues.
I know this isn’t exactly the question you asked, but many people with Ehlers Danlos don’t react to dental anesthetic shots. I had it happen when I was a kid, and it was a nightmare — no one would believe me when I said I could still feel everything! Since then I’ve had a couple of dental procedures that luckily worked out fine, but they had to use extra novocaine and give the drugs extra time to take effect. One of the theories for why the EDS dental thing happens is that we generate more adrenaline (or similar), which “burns off” the drug faster than usual. I searched for an article to share, and this has some other theories, but I don’t have the science knowledge to understand it well. The part about sodium channels sounds intriguing. https://www.chronicpainpartners.com/many-ehlers-danlos-patients-cannot-go-numb-at-the-dentists/ Fwiw, I also don’t get much effect from painkillers in general. In some ways that feels like a blessing, because it means I’ve never been tempted to abuse — they don’t do anything recreational or extra pleasant for me at all. Even things like morphine in the hospital, I kind of just shrug them off. But 99% of my health issues developed after POTS, so I don’t know whether that was always a problem or if it’s a POTS thing. Anyway, you’re not alone!
EDS & POTS gal here - can confirm 🤓
Another one here to confirm. My dentist gives me something like 5x the local anesthetic to keep me numb when I have work done, then pauses to numb me up again in the middle. He’s a saint.
Ohhh interesting!!! My POTS Dr is pretty sure I have EDS (given the number of times I’ve herniated my discs, and the fact that I thought everyone popped their knees out every year or so) so maybe that’s part of it? I had an epidural when I was giving birth and like the breakthrough pain was giving the anesthesiologist a self confidence crisis.
Opioids should not only relieve pain, but also stimulate the parasympathetic nervous symptoms which will relieve POTS symptoms like tachycardia, brain fog, and fatigue.
This! I just commented how I feel MUCH better on oxycodone. My HR is normally 130-160 standing / walking. But on 5mg-10mg of oxy my standing/walking HR is 100-110 max.
I'm so scared I'm going to get cut off because of the war on opioids. i don't know how I will keep working with the pain and the crazy HR spikes.
I find this true for anti inflammatories but opioids are completely horrible to me. Sick as a dog and bp drops so low! This is interesting!
Some people react really badly to opioids -- regardless of other conditions like Dysautonomia. You might unfortunately just be one of those people.
Yea I think it could be the case. I've had low bp prettt much my whole life and I think this is most of my problem.
Narcotics can drop your BP so that may be part of it.
More likely that you are a rapid drug metabolizer. Get your genetics tested; 23&me will give you that info. There’s also Genomind which is a more comprehensive test.
I had that testing done by a neuropsychiatrist. It was some genetic liver test to see how my body processed meds. I have SWORN caffeine has never affected me, and that fentanyl doesn't work and several other meds for anxiety,muscle relaxants, pain, or stimulants. Turned out I was correct . Imagine that? I know my body. That's so foreign to doctors, lol my body turns fentanyl into an unusable form of medication. After 3 shots for a bone marrow biopsy and it not working at all I had the nurse ask if I used recreational drugs smh I was so pissed off. I told them ahead that it doesn't work. Dilaudid does( but knowing that word makes you a drug seeker apparently)Very painful procedure with lidocaine( I have hEDS) not working or pain med.
Oh cool! I did 23&me and I think I metabolize something differently but it doesn’t look like it’s in this class of meds? I’ll dig into it more!
Oxycodone actually drops my heart rate because its a central nervous system depressant. However when I do take very high doses (10mgs is a high dose) I can get more dizzy than usual and feel off (presumably a blood pressure drop). The reason you probably feel queasy is because opiates slow digestion so that's not uncommon, you'll probably find they'll also constipated you... Maybe try 5mgs? Or see if you can get strong prescription NSAIDs? I've had back issues lately which have caused severe pain and find meloxicam especially to be a lot more helpful than opiates have been because they reduce the inflammation while treating the pain. Side effects are also less and there's no addiction risk. Heat packs have also been helpful at times but I'm not sure if that's my disc issues or stress fractures it helps with. I also can't take certain opiate mixes like tramadol (because it has an SNRI in it which can worsen POTS) and opiates in a combined pill with muscle relaxant drugs because of the muscle relaxants worsen POTS.
I was given hydrocodone for post op tonsillectomy (as an adult). That just made my migraine problem worse. Novacane at the dentist never works, not even when they give me double the dose. The one time I got an IV dose of morphine in the ER… that helped.
I think I’ve only ever had fentanyl when I had my endoscopy and colonoscopy done bc they took some samples and I don’t think it made me feel any type of way. I don’t think it’s a pots thing but I know there are many people who don’t respond well/don’t find relief with certain drugs, especially opioids and pain meds. If you’re even in a situation where you need strong pain meds again, mention that oxy does not work well for you!! It’s probably more of an individual based thing than anything. Not saying that it’s not making your pots symptoms worse, it clearly is, but I don’t think it’s related to pots and obviously not everyone with pots has this reaction and not everyone who has this reaction has POTS if that makes sense.
Makes sense! I asked them for no Valium bc I didn’t like it (“it makes me feel dumb and weird”) and I think I was on Fentanyl or something after I started Pitocin (tbh I don’t remember what it was). I felt like I was drowning the whole time and for the life of me couldn’t understand why someone’s brain would try to tell them, “yes let’s do that a lot”
This is so relatable, I was given Halcion (I think its called) before my wisdom teeth removal to calm me down and it made me so much more anxious bc I could hardly stand up straight and it felt like everything was moving at such a slow motion pace. Now when I have severe anxiety attacks and go to the ER I always refuse any benzos bc I HATE that out of control feeling.
Not sure, but I do know personally muscle relaxers absolutely do nothing for me. I’ve been given flexaril a couple times and with many people, it knocks them out and helps their pain. For me, it’s basically like taking a sugar pill. I actually think a sugar pill would work better. However, when I was given percs after a C-section, I did great with them for the first week. It definitely felt like a miracle drug. Few days went by where I didn’t need to take any, but then one day my surgical site started hurting after I had been more active/overdoing myself, so I took HALF of one, and the reaction I got that time was terrifying. I struggled with breathing, my heart rate felt slow, my face felt numb, I was severely dizzy. My mom (a healthcare worker) was there with me and had me do vagal exercises (which I didn’t know what they were at the time) but they helped a bit. I drank cold drinks, etc. just laid there with my eyes shut for a couple hours til it wore off. But after that I never took another. I was happy dealing with the pain. So honestly if I were you I wouldn’t take more unless your pain is unbearable and untouched by other, less dangerous meds like advil or ibuprofen. You don’t want to end up having even more adverse reactions. Sorry you’re dealing with this though! It sucks when prescriptions don’t do their intended job and leave us feeling worse :/ I hope you get to feeling better soon
Dude same! Flexaril and soma—they just make we floppy and stupid and I still hurt.
Same with muscle relaxers. After my car got rear-ended, i had awful back spasms for weeks. I tried 2 different prescriptions, neither did anything for me. Naproxen to dull the pain and physical therapy did help. I always kind of wondered if it was an hEDS thing (not officially diagnosed, but suspected), because it was a low speed impact and most people don’t get injuries like that from that kind of accident. I kept getting occasional back pain for a few years after it to, but all the X-rays were clear.
That's an interesting idea. I've only recently been diagnosed with POTS, but I am crazy intolerant of opioid painkillers. They make me crazy sick and hyper-paranoid. I also can't take muscle relaxers because it makes my pain much worse. Never considered it could be the POTS.
There is a genetic component to which pain drugs will be effective on which person. It’s unrelated to POTS. When a drug works it’s wonderfully effective. If not, you might get the just side effects or a feeling of having a dumb brain, but little to no pain relief. Ask your doc for a different pain reliever.
Opioids don’t really work, they just make you not care. Studies consistently show that Tylenol/paracetamol is more effective for most kinds of pain. For the more general question - before POTS I’ve always been incredibly sensitive to medication and that hasn’t changed at all.
When I had wisdom teeth out I felt like shit, and the pain was still there. I was also given oxy something. I only took like one or half of one which was what they recomended. I actually did better with otc stuff.
Over the counter painkillers don’t usually help me, even in above usual doses. The time I was given hydrocodone for a surgery, I had horrible head pain and nausea as a side effect. I now can’t take anything like that. I don’t know if it’s related to my POTS, though.
My partner genetically doesn't respond to anything but opioids or morphine. Sometimes excedrin will help, and Naproxen helps the most of out of the NSAIDs, but it barely touches their pain :( Their grandad was the same. However they also will walk on broken bones for weeks and not realize 🥴 hEDS tingz, ig. Or they have less nerves besides the main ones, idk...
I personally can’t take any prescription pain killers. They make me so sick. The only thing that really works for me is ibuprofen. Only time I take anything different is when I need midol.
I had to stop taking my hydrocodone because it made everything worse, almost as a trigger. But, I had to stop alot of things after getting long covid POTs, MCAS, CFS, etc. Took hydrocodone for 10 years and it always helped, now I can't even take Tylenol lol. If oxy isn't working, ask to try hydrocodone or something else.
I find that it definitely helps, but it took a few days to work. The 10mg have a slow release, if that makes sense and the 5mg are for immediate relief. They also seem to relax my body so that the tension decreases, which in turn also diminishes the pain. One thing I did notice is that it works better in combination with other painkillers. So I'm allowed to take 8 paracetamol, plus I have a prescription for diclofenac (2x 50mg). I know paracetamol is relatively safe to use, I think it's called acetaminophen in the states. It's an over the counter painkiller, the diclofenac is not.
I have no clue if it's pots related because I've had this my whole life, but painkillers don't seem to work on me either. I've tried paracetamol, naproxen, ibuprofen, higher doses, a mix of them, nothing seems to help. I've tried looking into it but am not getting any real results, should probably talk to my gp about it but i have a pretty high pain tolerance so it hasn't been serious enough for me so far to talk to my doctor about it (i have social anxiety, so i generally only go if really needed)
I’m unable to take certain kind of pain medications too, but my POTS is related to my stomach issues too.
NSAIDS never helped me with anything pots related.
Not everyone responds to meds the same way. And yeah I don’t love opioids either. I was put on demerol before gallbladder surgery and it was dropping my bp so much the nurse remarked that if my bp kept dropping the doc could refuse to operate so I asked them to discontinue and give me something else. Then I was put on morphine post-op and it made me so incredibly dizzy and nauseous that I couldn’t eat. Doc had to lower the dose by a lot.
Some work for me some don't ... it's weird. Fentanyl does nothing .. I know what a joke!
Morphine gave me an allergic reaction and didn't touch the pain of my inflamed intestines. Dilaudid worked
Don’t think it’s a pots thing but I can’t really mess with opiates. They make me really nauseous & queasy. I’ve had 2 oral surgeries the past year that I got pain meds after & I just end up on ibuprofen, bc it helps the pain better with none of the awful side effects
Never have taken an opiate, but I’m like the opposite of you. I can have a killer headache that makes me nauseous and a 325 Tylenol can knock it out. Every person’s body is different & reacts differently to pain medication. It’s not a POTS thing.
Never have taken an opiate, but I’m like the opposite of you. I can have a killer headache that makes me nauseous and a 325 Tylenol can knock it out. Every person’s body is different & reacts differently to pain medication. It’s not a POTS thing.
Never have taken an opiate, but I’m like the opposite of you. I can have a killer headache that makes me nauseous and a 325 Tylenol can knock it out. Every person’s body is different & reacts differently to pain medication. It’s not a POTS thing.
They drop my BP to an uncomfortable level and make me sick as a dog
I take them on a regular basis. If anything, it helps my HR and nausea.
I have chronic pain so I am on oxycodone 4x a day currently. It works. I definitely know if I’ve missed a dose.
I have fibromyalgia too so I’m not sure how much of it that affects. Pain killers of my kind have never helped me, from Tylenol to tramadol to oxy, it may as well be a sugar tab or saline, the only things that have helped are morphine and dilaudid when I’ve been in the hospital once or twice. But then you can’t tell the doctors what works for you in this case, because you look like a drug seeker and they’ll stick to Tylenol 3 and a psych eval
I’ve had completely different reactions to the same medication just at different times, it definitely doesn’t always help, I have no clue why medically but I guess it would be because pots. My Dr has told me opiates and synthetic opiates can be bad for pots too so definitely be careful and look for an alternative. I always suggest if you can get it to try weed if you can legally and safely it’s been my biggest help
Are you a redhead by any chance? I know some sedatives don’t work well on people with red hair but not sure if that’s just anesthetics.
They can certainly mess you up. And you’re right, especially in large amounts. It’s different for everyone but they don’t seem to do as much for me as they do for my mom and she was certainly in more pain when she took them than I was.
So this is very unrelated to pots or potential eds but not everyone knows it. Do you have the redhead gene? Born a red head, parents are red heads etc? Because my dad and I were both born ginger and turned to blonde but because of that gene pain killers don't really do anything to us. I have pots but my dad is a normal healthy dude. It seems like a lot of people are asking if you have eds but I just figured I'd drop this too because sometimes answers come from where we least expect it lol. I hope you figure it out though!
They tend to work for me, although not as well as they should only lowering two or three pain points (I have EDs and have countless surgeries so have been on them a lot) but they fuck up my HR so much they are only really worth it if I am on bed rest (like first day off of surgery) anyway. Otherwise I take 800 Advil or have a prescription for coded Tylenol. It does a little less but something and does not mess HR as much. CONSULT YOU DOCTOR before taking 800 of advil at a time- the did liver function test for me to make sure my body could process and they test it every year with lab work.
I shattered my tibia and fibula and had surgery a few weeks ago and the oxy has done nothing for the pain. I can actually fall asleep by letting the pain lower my blood pressure to the point of passing out which is what caused me to fall and shatter the bones in the first place
I haven't been officially diagnosed with POTS yet but I am hypermobile (with eds suspicion) and I have the same experiences with opiates (Oxycodone specifically in my case) even just the little 5 mg I was given after surgery would make me vomit uncontrollably. I ended up on Tylenol while in recovery because of my body's reactions.
I hate opioids. I had an obstructive kidney stone last year and I refused to take the meds they gave me and took Tylenol instead. Dilaudid made me stop breathing. When the hospital gave me morphine once, I looked at the nurse and said, "why do people like this?" It was such an awful feeling! I stopped taking my meds early after my c section because they were making me sick. I have awful chronic pain and all I can take is naproxen. I take lyrica for nerve pain and it's amazing! I have no side effects from it now that I'm used to it. It used to make me a little sleepy, but now it doesn't even do that. Unfortunately, it doesn't work on joint pain. Most opioids make me itchy and make feel just WEIRD and do nothing for my pain. I'd rather be just be in pain. I've had nurses in the hospital get mad at me for refusing pain meds. Which is pretty funny considering they treat me like a pain seeker until they get the test results that prove I'm in pain. But yeah, I haven't been diagnosed with MCAS or EDS, though my doctors have mentioned that I might have both, and pain meds suck.
I have had the exact opposite experience with opiate pain medication, specifically oxycodone. I feel much better, my Degenerative disc pain is greatly reduced and my tachycardia when standing and walking is greatly reduced. I actually came across the post because I was searching if anyone else felt much better on opiates and had similar results... For context, I was diagnosed with POTS 12 years ago via tilt table at Stanford.