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Very severe accidental withdrawal symptoms
I have a large number of medical diagnosis - serious ones that cause a great deal of pain. I've therefore been on large doses of narcotics for many years. I'd give anything to be able to get off of them, but I think I'm stuck.
Anyway, I have severe damage to my GI tract. My esophagus is completely dysfunctional (zero peristalsis) and is very enlarged and flaccid. The LES is very lax, I have Gastroparesis, and a colon that does little on its own. (This is due to Systemic Sclerosis gradually scarring my GI tract) I have to take large doses of lactulose and other laxatives to function. While I'm asleep - even if in an almost upright position, I regurgitate gastric contents into my sinuses and into my lungs, which either produces an acute emergency, or at least causes pneumonitis and/or pneumonia. (This happens most often when my GI tract isn't very cleared out and happens frequently)
Now - when this happens in a severe form, I get a very high fever and am unable to care for myself. I don't notice that I haven't taken my meds, because I am in so much pain from the fever and its effect of increasing all my usual pain, as well as causing a kind of fever confusion. After a couple of days of this, I develop an inability to speak. I know I want to speak (to my adult child), but all I can do is moan, point, groan, plead etc. As this goes on, I get more and more withdrawal symptoms, and have in the past, lost all ability to communicate or relate properly to medical staff etc. (by now, I've been taken to the hospital). There were also times that I experienced hallucinations as well.
This has happened in varying degrees many times, however recently, my son was home when I first started feeling the inability to speak. I was restless to the max, and obviously had multiple withdrawal symptoms, but no thought to seek my meds. My son finally got it through his head that I needed to get to the ER and so he started to pack a bag. It was comical in retrospect because he was asking me what I wanted to take and I would point, grunt, and otherwise act out my needs. He came around to packing my meds when it occurred to him to ask me if I'd taken my meds. I knew immediately that I hadn't and nodded wildly that yes, I needed them. Within half an hour to 45 minutes, I was able to communicate normally.
Has anyone ever heard of such a thing. I've told my doctors that I felt these symptoms were due to withdrawal (knowing that the fever had caused me to not take my meds) but they (except my own doctor) all just assume it's an overdose type deal. It made me so mad cause their first course of action was to reduce my drugs, sending me into worse and worse withdrawal. It was always horrible, until I was finally put back on my routine. This time, I knew for certain what was going on and have informed my doctor. He doesn't have a clue why these symptoms occur.
Recently, my daughter found me unconscious from a severe aspiration, and I had been that way for several hours even though I was on Oxygen (couldn't get in). When she and her brother got me to the ER, I was in repiratory failure and they didn't think I'd make it. They cut off my clothes, put in a breathing tube, gave fluids, etc., and were able to stabilize me. They transferred me to a hospital nearby with a good ICU and continued care. I came to a few days later and eventually recovered. But their belief that it could have been from too many drugs stalled the recovery - that is, once I regained consciousness. Of course being on all these meds makes aspirating a more likely event - no matter what the medical cause - that's why I keep trying to lower them.
I do have some brain damage (atrophy) due to MS as well as some lesions they don't know for sure what they are. I also have Systemic Sclerosis, Sjogrens, Diabetes, type 1, hypothyroid, interstitial cystitis, osteoporosis, DDD, Sacroiliitis, Scoliosis, Pulmonary Hypertension, COPD, Sleep Apnea, Heart valve and chamber dysfunction and the list really could go on forever. It lets you know that there's a lot going on. Believe it or not - although it's not easy - I am usually able to care for myself at home.
Sorry my question is so long - it just seemed to need a lot of background. Also, I take less narcotics now than I did ten years ago. I systematically keep reducing the amount best I can. Sometimes I can't, but overall, I'm on at least half my long-acting morphine now. Sometimes, I think I'm on the verge of withdrawal at all times and so there isn't much wiggle room. BUT - my symptoms of speech loss - ?? Anyone?
Anyway, I have severe damage to my GI tract. My esophagus is completely dysfunctional (zero peristalsis) and is very enlarged and flaccid. The LES is very lax, I have Gastroparesis, and a colon that does little on its own. (This is due to Systemic Sclerosis gradually scarring my GI tract) I have to take large doses of lactulose and other laxatives to function. While I'm asleep - even if in an almost upright position, I regurgitate gastric contents into my sinuses and into my lungs, which either produces an acute emergency, or at least causes pneumonitis and/or pneumonia. (This happens most often when my GI tract isn't very cleared out and happens frequently)
Now - when this happens in a severe form, I get a very high fever and am unable to care for myself. I don't notice that I haven't taken my meds, because I am in so much pain from the fever and its effect of increasing all my usual pain, as well as causing a kind of fever confusion. After a couple of days of this, I develop an inability to speak. I know I want to speak (to my adult child), but all I can do is moan, point, groan, plead etc. As this goes on, I get more and more withdrawal symptoms, and have in the past, lost all ability to communicate or relate properly to medical staff etc. (by now, I've been taken to the hospital). There were also times that I experienced hallucinations as well.
This has happened in varying degrees many times, however recently, my son was home when I first started feeling the inability to speak. I was restless to the max, and obviously had multiple withdrawal symptoms, but no thought to seek my meds. My son finally got it through his head that I needed to get to the ER and so he started to pack a bag. It was comical in retrospect because he was asking me what I wanted to take and I would point, grunt, and otherwise act out my needs. He came around to packing my meds when it occurred to him to ask me if I'd taken my meds. I knew immediately that I hadn't and nodded wildly that yes, I needed them. Within half an hour to 45 minutes, I was able to communicate normally.
Has anyone ever heard of such a thing. I've told my doctors that I felt these symptoms were due to withdrawal (knowing that the fever had caused me to not take my meds) but they (except my own doctor) all just assume it's an overdose type deal. It made me so mad cause their first course of action was to reduce my drugs, sending me into worse and worse withdrawal. It was always horrible, until I was finally put back on my routine. This time, I knew for certain what was going on and have informed my doctor. He doesn't have a clue why these symptoms occur.
Recently, my daughter found me unconscious from a severe aspiration, and I had been that way for several hours even though I was on Oxygen (couldn't get in). When she and her brother got me to the ER, I was in repiratory failure and they didn't think I'd make it. They cut off my clothes, put in a breathing tube, gave fluids, etc., and were able to stabilize me. They transferred me to a hospital nearby with a good ICU and continued care. I came to a few days later and eventually recovered. But their belief that it could have been from too many drugs stalled the recovery - that is, once I regained consciousness. Of course being on all these meds makes aspirating a more likely event - no matter what the medical cause - that's why I keep trying to lower them.
I do have some brain damage (atrophy) due to MS as well as some lesions they don't know for sure what they are. I also have Systemic Sclerosis, Sjogrens, Diabetes, type 1, hypothyroid, interstitial cystitis, osteoporosis, DDD, Sacroiliitis, Scoliosis, Pulmonary Hypertension, COPD, Sleep Apnea, Heart valve and chamber dysfunction and the list really could go on forever. It lets you know that there's a lot going on. Believe it or not - although it's not easy - I am usually able to care for myself at home.
Sorry my question is so long - it just seemed to need a lot of background. Also, I take less narcotics now than I did ten years ago. I systematically keep reducing the amount best I can. Sometimes I can't, but overall, I'm on at least half my long-acting morphine now. Sometimes, I think I'm on the verge of withdrawal at all times and so there isn't much wiggle room. BUT - my symptoms of speech loss - ?? Anyone?
Hey- thanks for your comments - I appreciate you taking the time to answer. I have been on opiates unfortunately for a long time and am a very well trusted patient, due to a long standing good record - i.e. I've never needed them early, never lost, . . . As a matter of fact, I am fortunate to be on half the amount I was on a decade ago - from gradual reduction of dose on my own - hard, but worth it. They no longer help as much for my extreme pain, so I'm trying other things along with the lesser dose - meditation and stretching etc. (you know the drill).
Of course, due to the many years on these drugs, my body IS addicted - meaning I'm dependent on them. I just don't show addictive tendencies, nor take them for reasons other than pain. (I know I am very fortunate) As we all know, however, once your body is dependent, even if you have a pain free day (which I don't) you can't not take the opiates, or you'll have withdrawal.
OK - to clarify my situation - my problem is not forgetting to take them, nor do I have ER visits related to the meds, nor Dr's office calls due to the meds. When I develop pneumonitis due to aspirating gastric contents, my lungs suffer extreme damage and sometimes it is severe enough to give me a fever of 103 - 105, and I am THEN too ill to do ANYTHING. My use of the phrase "forgetting" was misleading. I forgot, because I was basically either unconscious or close to it. I have gone to the ER due to complete respiratory failure only once, (thanks to my kids getting me in a wheel chair and car) and they didn't think I'd live - but I did obviously. The other times I've had to go via ER was because after developing pneumonia after the pneumonitis, my O2 sats were just too dangerously low and had also developed pleurisy, and both pulmonary and pleural effusions bilaterally. (chronically, I have alveolitis and bilateral paralysis of the diaphragm, as well as lesions of unknown etiology, mild pulmonary hypertension and COPD. It's (the aspiration) a very serious problem, which, even though I have diseases known to cause premature death - this is thought to be what will do me in. But since opiates depress respiration, the hospital doctors need to be careful with their use in breathing compromised patients - so - when in the hospital, my meds are reduced after I've already not taken them for a day or so, and I develop withdrawal problems. The respiratory problems aren't caused by the meds, but are caused by the aspiration, which is caused by the scarring of my GI tract from Systemic Sclerosis, and neurological problems from MS, etc. (too much info I know - sorry)
Therefore, the reason for my hospitalization isn't charted as having anything to do with my narcotic use. I tell them, however, after I can talk again, that I think my inability to speak could have been due to withdrawal. They've never believed me because it's not a normal symptom. They've thought I had a stroke (cause I have very abnormal cat scans), and they've thought I had MS neurological problems, and one time I did have encephalitis.
This past event was the first time I was able to know for sure that the symptom of not being able to talk was alleviated immediately upon resuming the meds. I do agree that it probably isn't due only to the withdrawal, but a combination of brain damage, MS, and the withdrawal. I just know that I can talk again right away when my normal dosage is resumed, and can't talk after 1 1/2 - 2 days off the meds. I find this so curious, I just had to ask. I'll take your advise and ask on the forum that experiences more withdrawal syndromes.
As much as I fear the strange withdrawal symptom - what I have to do my darndest to not have happen is aspirating. I've never forgotten to take meds except due to these extreme illness cases.
Thanks all, and if you ever hear of this strange symptom, let me know.
Of course, due to the many years on these drugs, my body IS addicted - meaning I'm dependent on them. I just don't show addictive tendencies, nor take them for reasons other than pain. (I know I am very fortunate) As we all know, however, once your body is dependent, even if you have a pain free day (which I don't) you can't not take the opiates, or you'll have withdrawal.
OK - to clarify my situation - my problem is not forgetting to take them, nor do I have ER visits related to the meds, nor Dr's office calls due to the meds. When I develop pneumonitis due to aspirating gastric contents, my lungs suffer extreme damage and sometimes it is severe enough to give me a fever of 103 - 105, and I am THEN too ill to do ANYTHING. My use of the phrase "forgetting" was misleading. I forgot, because I was basically either unconscious or close to it. I have gone to the ER due to complete respiratory failure only once, (thanks to my kids getting me in a wheel chair and car) and they didn't think I'd live - but I did obviously. The other times I've had to go via ER was because after developing pneumonia after the pneumonitis, my O2 sats were just too dangerously low and had also developed pleurisy, and both pulmonary and pleural effusions bilaterally. (chronically, I have alveolitis and bilateral paralysis of the diaphragm, as well as lesions of unknown etiology, mild pulmonary hypertension and COPD. It's (the aspiration) a very serious problem, which, even though I have diseases known to cause premature death - this is thought to be what will do me in. But since opiates depress respiration, the hospital doctors need to be careful with their use in breathing compromised patients - so - when in the hospital, my meds are reduced after I've already not taken them for a day or so, and I develop withdrawal problems. The respiratory problems aren't caused by the meds, but are caused by the aspiration, which is caused by the scarring of my GI tract from Systemic Sclerosis, and neurological problems from MS, etc. (too much info I know - sorry)
Therefore, the reason for my hospitalization isn't charted as having anything to do with my narcotic use. I tell them, however, after I can talk again, that I think my inability to speak could have been due to withdrawal. They've never believed me because it's not a normal symptom. They've thought I had a stroke (cause I have very abnormal cat scans), and they've thought I had MS neurological problems, and one time I did have encephalitis.
This past event was the first time I was able to know for sure that the symptom of not being able to talk was alleviated immediately upon resuming the meds. I do agree that it probably isn't due only to the withdrawal, but a combination of brain damage, MS, and the withdrawal. I just know that I can talk again right away when my normal dosage is resumed, and can't talk after 1 1/2 - 2 days off the meds. I find this so curious, I just had to ask. I'll take your advise and ask on the forum that experiences more withdrawal syndromes.
As much as I fear the strange withdrawal symptom - what I have to do my darndest to not have happen is aspirating. I've never forgotten to take meds except due to these extreme illness cases.
Thanks all, and if you ever hear of this strange symptom, let me know.
Hey- thanks for your comments - I appreciate you taking the time to answer. I have been on opiates unfortunately for a long time and am a very well trusted patient, due to a long standing good record - i.e. I've never needed them early, never lost, never even upped them. As a matter of fact, I take less than is prescribed when at all possible.
Of course, due to the many years on these drugs, my body IS addicted - meaning I'm dependent on them. I just don't show any addictive tendencies, nor do I take them for reasons other than pain. As we all know, however, once your body is dependent, even if you have a pain free day (which I don't) you can't not take the opiates, or you'll have withdrawal.
OK - my problem is not forgetting to take them, nor do I have ER visits related to the meds, nor Dr's office calls due to the meds. I have pneumonitis from aspirating, which damages my lungs and sometimes it is severe enough to give me a fever of 103 - 105, and I am then too ill to do anything. I have gone to the ER due to respiratory failure once, and they didn't think I'd live - but I did obviously. When there, due to respiratory distress, my meds are reduced and I develop withdrawal problems. The respiratory problems aren't caused by the meds, but are caused by the scarring of my GI tract from Systemic Sclerosis, and neurological problems from MS, and Pulmonary Hypertension etc.
Of course, due to the many years on these drugs, my body IS addicted - meaning I'm dependent on them. I just don't show any addictive tendencies, nor do I take them for reasons other than pain. As we all know, however, once your body is dependent, even if you have a pain free day (which I don't) you can't not take the opiates, or you'll have withdrawal.
OK - my problem is not forgetting to take them, nor do I have ER visits related to the meds, nor Dr's office calls due to the meds. I have pneumonitis from aspirating, which damages my lungs and sometimes it is severe enough to give me a fever of 103 - 105, and I am then too ill to do anything. I have gone to the ER due to respiratory failure once, and they didn't think I'd live - but I did obviously. When there, due to respiratory distress, my meds are reduced and I develop withdrawal problems. The respiratory problems aren't caused by the meds, but are caused by the scarring of my GI tract from Systemic Sclerosis, and neurological problems from MS, and Pulmonary Hypertension etc.
i do the same as weathergirl and as soon as i pick up my meds i put them in their containers---each day's worth for a week---four containers---so all pills in their rightful places! Excellent thing to do! omhome
Sorry to hear of your issues with all of this...
I have not heard of this happening due to just withdrawals of opiates...There is an addiction board that you can pose this question to as the folks over there have a plethora of information about withdrawals.
I am NOT saying you are addicted...just saying that you could ask to see if they know anything....
The issue though is that even if they say they have heard of it...the key is trying to do all you can to not have this happen again. If a Dr. thinks you aren't capable of taking your meds responsibly then they may end up taking them away from you alltogether unfortunately. The states and the DEA are getting very tough with all their regulations and precise following of paperwork from Drs. Each time something happens in regards to your pain meds and you wind up in the ER or calling your Dr., it's going in your medical records.
You can easily put alarms on your phone to remind you when to take your medications. Keep the phone with you at all times.
If you are so ill that you are delirious to not know what is going on then you need to call 911 and get to the hospital and then have your family bring your pain meds there so that the Drs. can give you what you need. If you do this first, then there should be no reason you are going "days" at home in this condition as that is not safe whatsover as you could leave a stove on or cause other harm to yourself. I can see something happening once in a year or two...but if it's happening frequently then you need to look into getting a roommate or living in a place with assistance.
So, I would think it's moving forward and being proactive so that this doesn't happen. I have all my meds in a 7 day/4 times a day container I bought at Walmart and have my phone alarm to remind me just in case.
Truly not trying to scold you....It's just as easily as you can forget to take your meds, your Drs. may be worried that you will forget you took them and then take more than prescribed.
I have not heard of this happening due to just withdrawals of opiates...There is an addiction board that you can pose this question to as the folks over there have a plethora of information about withdrawals.
I am NOT saying you are addicted...just saying that you could ask to see if they know anything....
The issue though is that even if they say they have heard of it...the key is trying to do all you can to not have this happen again. If a Dr. thinks you aren't capable of taking your meds responsibly then they may end up taking them away from you alltogether unfortunately. The states and the DEA are getting very tough with all their regulations and precise following of paperwork from Drs. Each time something happens in regards to your pain meds and you wind up in the ER or calling your Dr., it's going in your medical records.
You can easily put alarms on your phone to remind you when to take your medications. Keep the phone with you at all times.
If you are so ill that you are delirious to not know what is going on then you need to call 911 and get to the hospital and then have your family bring your pain meds there so that the Drs. can give you what you need. If you do this first, then there should be no reason you are going "days" at home in this condition as that is not safe whatsover as you could leave a stove on or cause other harm to yourself. I can see something happening once in a year or two...but if it's happening frequently then you need to look into getting a roommate or living in a place with assistance.
So, I would think it's moving forward and being proactive so that this doesn't happen. I have all my meds in a 7 day/4 times a day container I bought at Walmart and have my phone alarm to remind me just in case.
Truly not trying to scold you....It's just as easily as you can forget to take your meds, your Drs. may be worried that you will forget you took them and then take more than prescribed.
I thought I'd try to put this question out there again. Has anyone ever heard of a narcotic withdrawal including an inability to speak. This has happened several times when I've been too ill to remember to take my long acting narcotic. After a day and a half to two days, I can't communicate with words. I can't think what I need to say - I just know I need help. It's weird. - other symptoms come later. Thanks
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