A cautionary tale for those of us who have used or are using opiates for pain.
I have several autoimmune diseases. I’ve survived leukemia with two bone marrow transplants. I have latent effects from the chemo that manifest themselves in all kinds of ways. I have herniated discs at C5-C6 and L5-S1 and that’s not everything but it gives you an idea. My pain is very real. Never ever less than a 5. I’m good with that.
I sought a pain doctor to help after I retired. I retired early. He put me on the butrans patch and when I developed an allergy to the adhesive he started me on buprenorphine. All was good. My pain was managed well from 2012 to last month when I quit cold turkey because I was at the top of the dosage and it wasn’t working. It’s getting harder and harder for people with legit pain issues to get the relief they need. It was time to quit. I didn’t know how right I was until I landed in the hospital.
Here’s what I didn’t know. About 34% of all people who take opiates will develop afib or other heart issues. The studies are easy to find and had someone told me that I don’t believe I would have taken them for 7 years. Quitting the opiates wasn’t that bad. My mood is great, mental acuity awesome and pain is even less without the opiate. You read that right. My heart however, is betraying me. I spent my career maintaining my physical health and strength to levels akin to a professional athlete. My resting heart rate four weeks ago was 65-70. My resting heart rate is now very high. Many times a day I’m experiencing tachycardia. Three times I’ve gone into afib. I spent 4 days in the hospital being monitored and all was well. Two weeks later, it’s back. I’m seeing a really good cardiologist tomorrow to try and get to the bottom of this. Believe me it’s terrifying. I’ve never had high blood pressure or heart issues. This came out of nowhere. Im not saying this will happen to anyone and believe me I’m all for anything that gives a patient relief. I don’t care what it is. But if you’re managing pain with opiates, please discuss the long term effects including afib and heart disease with your care provider. Be well-
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Nitrobunny
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I have taken opioid for many years and have regularly built in detox time as trance but up. I then started as lowest dose again. I am well aware that the heart etc May be effected and accept that risk. My detox sessions have clearly shown. Me that the pain is still there at 8 and 9, going up to 10 after the withdrawal stops and I see what dose I need to control pain. I have spoken to my Dr several times. I would prefer some quality of life and know I have not without pain relief. It is important that people know the potential issues. I know I can't take 20 more years of pain so am. Happy to take anythi g that adds quality to me life. I hope you continue to be pain free and you get you wish of not having to take opiates again. 🌻🌈
I completely get it, it really is a quality of life issue. I really wish my pain doc would have told me. I was honestly clueless and that’s my fault. When it worked, it worked well and got me down to a 2-3. Heaven when I usually end the day somewhere between 7-8. I’ll never be pain free but for me waking at a 5 is pretty good. I know most of us can deal with that. I’m pretty sure the day will come when I need them again but for now I’m going to tough it out. Thanks for your kinds words 🌸💜🌸
Thank you for sharing your story. I hope things turn out well for you. My blood pressure went very high for no reason the other week but has now settled to low high on just a beta blocker. The only culprit for me is long term Pred use.
I’m glad you responded so well to the beta blocker. I always knew prednisone came with a myriad of side effects. We’ve been talking about them for years. I can’t count how many of us have had cataract surgery alone. I just wish I would have done a little more research on the opiates. Best~
I'm so sorry that you are having these ongoing problems after already suffering so much. I have several other chronic conditions myself and can strongly empathize with you as I have been recently diagnosed with SANRT ( Sinoatrial Node Re-entrant Tachycardia) and POTS ( Postural Orthostatic Tachycardia Syndrome) and could not use Beta Blockers and am now on Ivabradine. It is stressful not knowing what comes next .
Although there have been long periods that I have used opiate medications , and occasionally have to use them for Acute episodes of Pain now , my heart issues I know aren't just drug based and have happened as part of a Dysautonomia Syndrome which has occurred as a part of the long term Stress put on my body by my other Health Conditions , GCA being the straw to break the Camels back.
I know that opiates , and our other drugs like steroids among others , especially if we have had to be on many of them long term over many years , can have an impact on all of our symptoms , but it isn't the whole story . Often , especially with Chronic Conditions like ours , part of the cause of Cardiac , Neuro , Gastric and Liver conditions that we suffer as we go on is also the Chronic Diseases themselves.
Has your Doctor put all the blame on opiate use or have they explained that it could be a combination of many of factors and Conditions affecting your Health ?
Sometimes , putting all the blame on us and our need for Pain Medications is very simple for Doctors to do , and it can make us feel far more responsible for Conditions like Afib than we actually are.
If you compare yourself to me , whom used other drugs and only sporadically used opiates , yet still has a new Heart Condition to contend with , you can see that it is far more complex , and maybe are not just to blamed on the drugs or you and your genuine need for Pain Relief in the past.
The Chronic illnesses have made you pay a price too.
If you ever want to talk to others on the forum contending with heart related issues and PMR or GCA there are a number of us out there who will happily support you in this next unnerving step in your Health pathway and give you some optimism about the treatment you can get and quality of life after things are managed .
Or feel free to PM me if you want to talk but aren't up to posting .
Sorry to hear you are fighting the afib battle - my sympathies!!
I also have afib - actually probably caused by the a/i part of PMR as it was there though very mildly long before pred BUT the use of i.v. diazepam as a muscle relaxant triggered a massive episode, they thought it was due to the pred they'd also used and repeated the diazepam which caused a second and worse episode. It is fairly well managed with medication and the bradycardia has been dealt with by a pacemaker so in general I'm good to go. But I still have short and mild episodes of tachycardia and a/f which at the time are a great disincentive to do anything but sit and leave me feeling tired next day.
I hope they can find an answer - are they long and severe episodes? I find liquid magnesium supplements (magnesium pidolate) taken at the slightest hint of the tachycardia that heralds the afib does seem to reduce the duration and severity. They used it in hospital and I did continue for a while on a regular basis but then reduced it to "as required". At my pacemaker check on Tuesday I may ask about going back to regular use.
Fortunately they’re not long episodes just intense and scary when they happen. I’ve learned I have some control over them if I catch them early on. It’s the ones that wake me from a deep sleep that annoy me the most. My cardiologist said this can go as quickly as it came on or I’m stuck with it for the duration but fortunately he’s really competent and explains things well. As I mentioned before my echocardiogram came back great and I’m doing a chemically induced nuclear stress test on Tuesday out of an abundance of caution. While I know it’s not fun to have your heart chemically stressed, information is always king and hopefully I have no blockages or abnormalities. 😊
I had all that done at the start - the worst thing about the chemically induced stress test is the dry mouth afterwards!!! That was awful. Make sure you have loads of water with you to just rinse your mouth out - that was how I survived the first hour or two after I left the hospital!
Hi Nitrobunny, like you I suddenly had a racing heartbeat recently 188BPM. Like you I have always had steady heart and good blood pressure readings. Unlike you I haven't taken Opiods. At present I have no idea what has caused it and may know more next week when I attend my first Cardiology appointment. Like Jane and PMRpro I am wondering if it is long term use of pred or impact of PMR. How can you be so sure it is Opiods that have cause your AF?
What he thinks happened is because I was on them for 7 years my heart got used to the fact they lower respiration, pulse and heart rate and adjusted. Since I quit abruptly my body more or less boomeranged and is struggling to find a norm again. It’s been four weeks and my sleep, GI tract and heart are all out of sorts. I’m feeling great otherwise. The PMR is the best it’s been in years. Hopefully I’ll get it sorted out soon 😊
~Hi Nitrobunny - I have had intermittent bouts of paroxysmal a/f vs paroxysmal svt brought on by sudden raise in B/P - this can happen when I'm asleep, sudden movements out of bed to use bathroom in night or gentle exercising.
I don't take Opiods - all these symptoms have occurred since PMR diagnosis 2015 & as PMRpro has kindly helped me understand, it can be part of PMR inflammation.
I must add that I have slight fault in electrical circuitry of heart due to genetic defect. Surgery to repair ASD (1988) restored heart beautifully but now the heart has variety of different issues.
I take Hydrocortisone for my PMR, effective to around 6mg of Pred.
Had slight flare recently so have raised dose.
I carry Diltiazem HCL 30mg @ all times in event of any sudden onset of A/F -SVT.
I too take a range of Magnesium's throughout the day & what an absolute awesome find this has been. My B/P has never been so stable.
I take 75mg disolvable disprin - at this stage have not found a suitable blood thinner that does not make me more nauseous than I usually am on good day.
Thanks for all the amazing replies. I saw my cardiologist yesterday who put me on Diltiazem 180 CP and 81mg of aspirin for the moment. I’m having a nuclear stress test on Tuesday to make sure I don’t have any clogged arteries. My echocardiogram looked great. Muscle thickness all good and no enlargement. He said based on my medical history it’s more likely a combination of things that got me here and I’m just as likely to go right back to a normal heart rhythm in a matter of weeks. If not there’s ways to deal with afib and live out the rest of my life as normal as possible. It is wearing me out and I’m definitely not my scamper frolic self. I get tired just standing for a few minutes. The simplest tasks take Herculean effort.
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