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imapumpkin

Drug Sensitivity/morphine And Pots

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So I have always been esp sensitive to all medicines (with the weird exception of acetaminophen which just doesn't work on me at all whatsoever)...I have a low BMI and am a petite person so doctors have always assumed that is why i'm so sensitive. I am on the lowest poss dose of klonopin available and take half of the lowest possible dose of lexapro available and I can still physically tell when I've accidentally missed a dose.

My question is, does POTS make you even more sensitive to meds? I had a scary experience over the summer in the ER. I was in the Observation Unit overnight for chest pains (this was before I or my doctors realized that my POTS was full blown and since I have a MVP, chest pain is a big concern). At around 1 am, my nurse came in to give me something for the chest pain which had been totally unaffected by both a strong NSAID push and aspirin. The nurse then went to administer 1 mg of morphine into my IV. As she was mid-push into the IV, my arm started burning and then all of a sudden gripping pain shot up the IV arm into my neck, down my other arm, back up to my neck and then sped down the rest of my body all the way to my feet. It was moderate pain by my whole body bucked and everywhere I had pain felt extremely tight. The nurse kind of stood there and looked confused. When my body finally stopped bucking, and I was extremely shaken up, I turned to the nurse and said "What the h e double hockeysticks was that?"

The nurse goes "I've never seen a reaction like that before. That's not how morphine works. It doesn't effect you that fast. It hasn't had time to get into your system."

Well, what else could it be? It happened while she was infusing the medication and I could feel the sting in my arm as it was being pushed into the IV, which she said was normal. It was in my veins so that means its in my system. Could it be she just had never seen someone THAT sensitive to morphine? Someone suggested she hit nerve but that doesn't explain why the pain would have shot down through my chest, abdomen legs and toes. Now I'm wondering if POTS makes me too sensitive to morphine? She offered me another shot at one point and I was like no, don't come anywhere near me with morphine.

Any insights? This is one of the things that frightens me most about impending surgery-- my sensitivity and weird reactions to meds.

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I had morphine after my surgery and it just dropped my bp pretty low. I was in a lot of pain, so i really didnt care too much. I took morphi

ne tabs at home and did pretty okay too. I was on lexapro and klonopin and also on the lowest dose. I too noticed if i was even an hour late, and my cardio suspected it was because i didnt take it just for anxiety, but it also stabilized my bp and hr.

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Nerve pain makes more sense to me than a reaction to the morphine, but I don't know enough about how pain works. Have you ever taken other opioids? Codeine or tramadol, for instance? How did you get on with them? Have you ever had other problems from having a needle inserted?

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I think I was given codeine as a child with cough medicine but I can't remember...that was before my drug sensitivity started. The only problems inserting a needle has been once getting a vein struck but it was just sharp pain up my arm, nothing like a whole body bucking/pain

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The hitting a nerve thing definitely sounds worth investigating. It could be referred pain. When I had my gallbladder out, I got referred pain in my left shoulder blade, which is normal for that surgery. Nerve pain is weird stuff. But then the whole thing sounds weird, so I think you're right to investigate all possibilities.

I just have mild problems with morphine: it makes me throw up and it stops me from sleeping, which is similar to how I react to tramadol.

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I was always fine with painkillers. I had pethidine with no problems whatsoever. But three years ago when I was in hospital for my pacemaker insertion, they administered morphine for the pain. As she was pushing it through the syringe, I felt mildly itchy- then within seconds insanely itchy (I know this sounds weird)... right on the inside of my skull. I felt like tearing my eyes out so I could get to it. Horrible horrible feeling. They hit the alarms and people came running, my mouth swole up and then.. I felt very very far away. Like i could see everyone from the bottom of a swimming pool. I could hear them but couldn't talk. They put something else into my iv line and I was fine. Felt like I had been hit by a bus, but i was fine. Now I won't go near morphine. My husband says that more than any other event in my health history, that was the one when he thought I must just pop my clogs. He was very frightened. What I don't understand is why I tolerated morphine related drugs before and then suddenly reacted. I think that is odd.

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Sensitivity - that's what it is called when you suddenly react to something you have never reacted to before - developing sensitivity.....On a good day, morphine makes everyone itch....it sounds like you (Rachel) had an anaphylactic reaction to morphine so, you definitely don't ever want to take it again. Everyone has different reactions and side effects from medications. I think those of us with autoimmune issues are particularly sensitive to pain medications and anesthetics. I can take a pain pill and break it in half, put it with a tylenol or advil and have great pain relief. If I took the whole pill, I would be sick as a dog. In fact, I hate taking pain pills (narcotics, etc..) because they just mess my whole nervous system up. I also believe those of us with autoimmune problems experience pain in a whole different way than other people do. I have a very high pain threshold - more often than not, when I am in the hospital the nurses have to help me recognize that I am in pain when I become restless, agitated, and fidigity - I just don't interpret pain like most people do......

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Please be careful. My son had a procedure back in August and gave us a big scare. His blood pressure kept dropping and the doctor had to administer meds. before they could go any. further. However, when my son woke up, he shook so bad that he had to be restrained. This has never happened before. My husband had a nurse write down what our son was given so we will be more prepared the next time he has to be put under for another procedure. My suggestion is to keep a list of meds. that you are sensitive and try to avoid them.

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Morphine causes massive histamine relase (that's why it drops your blood pressure and causes nausea). If you have mast cell issues it is possible that is why the the anaphylactoid (not anaphylactic) reaction was so hyperacute.

(Also, if the IV was already in, there is no way that a nerve could have been hit by pushing the meds.)

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thanks squirrel, the IV had been in for several hours so i think you are right about it not being a hit nerve. None of my doctors has mentioned anything about mast cell issues so I'm not sure whether that could be a possibility.

Needless to say, I am very anxious about having surgery when I have so many drug sensitivities.

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No problem. Just to clarify, anaphylactoid reactions to morphine are VERY common in the general population (not just those with MCAS), they just usually take a minute or two to declare themselves...easily treated with benadryl, or prevented by pre-treating with benadryl before you have morphine. There are also opiates that don't cause any significant histamine release.

Everyone is supposed to have a pre-op consultation with their anesthesiologist to go over anything that might be an issue during the surgery. Make sure they are aware (even more so than your surgeon) about any medical conditions (dysautonomia), medications, medication sensitivites, familiy history of anesthesia intolerance, etc. I don't know where you are or what kind of surgery you are having, but if you are concerned you might want to make sure that your surgery is happening in a large hospital (lots of other resources if necessary...hopefully won't be an issue) rather than a community hospital or outpatient surgery center. Good luck.

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Flyingsquirrl, got my comment. It causes mast cell degranulation. People with MCAS tend to react to morphine.

Issie

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I had the itching with IV morphine. I went from passing out from the pain to be totally wired, sitting upright and trying to pull the canula out of my arm because the itching and burning was so intense. I was given IV Piriton and it went away. I was pretty out of it but I remember the nurse said I could have been allergic to something they gave me for nausea. I'm still not sure what exactly happened.

I've had oral morphine on several occasions since then and I haven't reacted to it at all.

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update on this topic-- since no doctor ever could explain to me why i had this weird morphine sensitivity, i was given another narcotic painkiller when i had a minor surgery in march to remove my sternal wires. i actually woke up briefly after being put under anesthesia when they gave me the opioid and i grabbed my neck because that's where i was feeling the pain.

last month i started seeing a new psychiatrist who THANK GOODNESS was able to give me an explanation for my reaction to opioids...essentially people like me because of genetic reasons don't metabolize narcotics very well, and i have what he called "lazy enzymes" in my liver that both make me react badly to the administration of them, and also not really get any results from painkillers. not only did morphine give me jolts of pain-- it didn't do anything to alleviate my surgical pain. because it is a genetic trait, i talked to my brother and he told me pain meds don't really work on him either. the only drug i've been given by a hospital intravenously that has helped my pain has been fentanyl, which is fast acting but not at all long lasting. i was so happy when my new doctor explained this to me. to be honest, i'm so used to the standard *shrug* "well i just don't know what to tell you..." from the medical world that whenever i encounter a doctor who's really on his or her game i want to hug them and shout "you have no idea how much i appreciate you!!!!!"

so perhaps POTS is not the cause after all, although i'm sure it doesn't help.

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Thanks for letting us know pumpkin! I hear you on feeling this happy, it is such a relief to find a doctor who actually is able to explain some our weird symptoms!

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Hi Pumpkin, I am also petite and have dangerous sensitivities to many medications...morphine is among them, as is oxycontin and codeine. As I have a known genetic disorder called SHOX, I know my collagen is defective--collagen is one of the places in the body that is associated with MAST cells. I also have trouble with local anesthetic; the normal novacaine or lidocaine just doesn't get me numb. I've also woken up during endoscopy.

For me, I have a short list of pain meds that work: most of my pain is from spasms--so benzos help, but I try not to take them b/c they can be highly addictive per my doc. NSAIDS like Alleve work amazingly well, but bother my stomach big time. Dilaudid is my go to med if I'm in the ER, but only time I've had it at home was post-surgically.

Nina

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I am very sensitive to meds. I have mast cell lie reactions to many. I am commenting because my "nerve pain" is off of the charts right now, and I do not know what I could take. In addition the meds themselves, I seam to be reacting to fillers.

I am not petite. LOL. Though I am probably more than I used to be.

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Gjensen,

Are you able to take prednisone or hydrocortisone? That has helped me with a lot of the inflammatory pain, and, in the paper that Janet added to one of my mast cell posts a couple weeks ago by the immunology folks at Brigham and Women's Hospital, it was listed as a potential treatment. Don't know if you've had to mark these off your list....I hope not.

Take care,

Katie

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I do not know Katie. I am skeptical (from experience), but I had not thought of hydrocortisone. Are you saying that some get some relief from the topical applications? I have not had any skin reactions, so I would feel comfortable trialing something of that sort. I am afraid that I will have to get something compounded to have any luck with pills. Heck, my diet has become very very limited.

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Hi Gjensen,

No, I meant oral hydrocortisone. Although, I do get relief from rashes from topical steroid creams. But I have no idea if there's any application for the topical with nerve pain. My original thought was that an oral steroid burst might be an option for getting some of the inflammatory response caused by mast cell degranulation under control thereby potentially helping the nerve pain.

The dietary weirdness caused by mast cell issues is very difficult. I had to stop my prednisone, antihistamines and nsaids for a test tomorrow (off meds between 1 and 2 weeks). I am definitely tip-toeing around food at this point. It's bizarre and annoying. I feel for you.

Katie

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I had two rounds of steroids recently--once in late Oct 14 to treat disc and nerve pain/spasms, which was given via epidural, and then again in Feb orally for a week for same reason. I had never had a problem with steroids, injected or otherwise, but these past few times sent me into massive runs of PVCs, tachycardia even while laying down, and tetany (random muscles spasming and causing my limbs to jerk or move involuntarily). The steroids caused me to have very low serum potassium and magnesium, requiring IV infusion 2x to stabilize me. I've learned now to start with smaller dose of whatever I'm supposed to be taking.

I also recently had a horrible reaction to Lyrica--made me manic. Very fast talking, very active physically, and actually felt awesome, but when it wore off every part of my body hurt b/c I over did my physical activities for about 24 hours.

Like Katie, I feel for you. So frustrating sometimes. For me, I never know what to expect when taking something new or something I haven't taken in a long time--it's always a surprise what happens afterward.

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Have you tried turmeric? Also for me, two of my best meds for POTS and pain is the combo of Tramadol and Bentyl. (I'm not on right now.)

Lately trying something new and off most meds and it seems to be working pretty well - it helps autoimmune system and anti inflammatory and has H1 and H2 properties - Black Cumin Seed. I'm mixing it and turmeric together in green tea and drinking it like medicine. Helps moderate quinolinic acid that affects NMDA.

Issie

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Personally, I've tried Tumeric. I can't really tell if it helps or not.

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I like tumeric and while I do use it in cooking occasionally, I have had to hold off on starting a tumeric/ginger blend supplement I purchased because it has blood thinning properties. The hypercoagulability question and subsequent oddities in my blood work came up while that was in the mail to me. I hope that all gets situated because I really want to try this supplement to help with my pain levels.

I can't do anything with cumin as it is a migraine trigger for me. (I love Indian cuisine, but I have to plan carefully when I eat it, because I'm liable to be unwell aftwrward. But, it's just so good, sometimes I have to go for it!)

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I intend to try Tumeric. Eventually. Right now, I am struggling to be able to get all that I need in my diet. I have not ventured into herbs, which I had not had good luck with. I would like to try it though.

I am limited to about 5 food items. Plain. LOL. I try something every day or every other day. Something will pass and then I will lose it. Chick peas were helping me stay going, but I started reacting to them.

I suspect that the steroids would over stimulate me. I have changed a lot recently, but I had trended towards being overly sympathetic.

For some reason I lost the POTS HR response, but still have low (and dropping) BPs. I am not sure where that is going.

I am going to need help managing the pain. I would not put the pain out of reach on a scale, but it covers such a large percentage of my body. I would say 60-70%. For some reason that makes it worse, and it messes with my head. Whatever causes the pain causes depression it seams.

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