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determining the lesser of two evils
I have been experimenting with various meds and varying dosages for a long time trying to find the right concoction to help alleviate my neuropathic pain, predominantly in my lft hand extending up to my elbow, but also some abnormal sensory stuff and extreme discomfort on the bottoms of my feet, left side of my scalp, numbne ss all down the left side of my torso, and MS hug (the latter helped significntly with the lastest dose of IVSM). I'm sure you're all as sick of hearing me complain about it as I am sick of talking about it.
I've tried Neurontin, Elavil, Neurontin/Elavil combo, Lyrica, Sativex, and Cesamet. I think that covers it. I'm back almost to square one with the Neurontin/Elavil combo due to side effects of the other three (weight gain and dry mouth, mouth ulcers and yucky taste, and intoxication, respectively).
I used to take 75 mg Elavil at night only, due to the drowsiness it sometimes induces. It seems to work the best at giving me some relief, for these abnormal sensations that have never left since first surfacing 3-ish years ago. As I'm off work, and with my doc's knowledge and OK, I thought I'd give the Elavil a try in the daytime and see how I react. For the past few days, I've continued with my 2700 mg/day in 3 divided doses. I added in the Elavil, 150 mg/day in 3 divided doses. It is by far the most effective relief I've experienced. The downside is the drowsiness. Not with every dose, not every day, but still most of the time. However having some relief during a time when I don't have to be especially alert (not driving or working while I undertake these experiments and recover from my latest relapse) has been wonderful, just being more comfortable makes my day, and me!, so much more pleasant.
So now I'm left with the decision of which is the lesser of two evils: unpredictable drowsiness (sometimes enough to send me to bed regardless of time of day), or, persistent pain, discomfort, and the grumpiness that comes with it. Either way, my ability to work a predictable schedule, full or part time, is hampered. In both cases my concentraton is seriously afected. I believe my fatigue, concentration and memory issues are due to a combo of the disease itself as well as side effects of the meds. For now that is not a problem, as I'm off work because of these issues and not under pressure to return. However I struggle with the idea of retirement (meaning LTD) at the tender age of 43. It's there for me if I need it, but how the h*ll do I spend the next 12 years waiting for my husband to retire, all the while my brain slowly turning to much for lack of being challenged.
Another issue with the Elavil is urinary retention. In a few more days on this regime, I should have a good idea of how big of a problem this will be. If it is a big problem, I know I'll have to cut back, this is not one more issue I need to have right now. I find if I drink loads of water on the Elavil, I'm ok, but if I just stick to 4 or so glasses per day plus other fluids, I have a hard time, and don't want to risk UTIs. I can drink loads od water here at home, but it's not feasible when I'm out and about, and then it is so hard to go when I know I should. And occasionally, I can go from retention/inability to go, to sudden urgency, with little warning.
Arrrgh! I don't even know where I'm going with all of this. I guess just wanting to run it past my good friends here, you get it like no one else does including my docs. Just typing this d@mn message has been a chore, and taking me forever. I've found even with the pain relief, my hand is just as clumsy and uncoordinated, not better nor worse as a result of the current regime. Anywt, I'll stop now and ask if any of you have any insight or excperience to share, as I'd really apreciate hearing from you.
BTW my neuro did metnion one more med I oculd try, Wellbutrin. I don't know, yet another different anti-dpressant as pain med, I'm not that optimiistic. If Elavil didnt come with those stupid side effec ts I would be so eternally happy and grateful. So far tough, it doesn't look like they are wearing off over time.
Sorry for all the typos I am sure I'll notice after I send this.
I've tried Neurontin, Elavil, Neurontin/Elavil combo, Lyrica, Sativex, and Cesamet. I think that covers it. I'm back almost to square one with the Neurontin/Elavil combo due to side effects of the other three (weight gain and dry mouth, mouth ulcers and yucky taste, and intoxication, respectively).
I used to take 75 mg Elavil at night only, due to the drowsiness it sometimes induces. It seems to work the best at giving me some relief, for these abnormal sensations that have never left since first surfacing 3-ish years ago. As I'm off work, and with my doc's knowledge and OK, I thought I'd give the Elavil a try in the daytime and see how I react. For the past few days, I've continued with my 2700 mg/day in 3 divided doses. I added in the Elavil, 150 mg/day in 3 divided doses. It is by far the most effective relief I've experienced. The downside is the drowsiness. Not with every dose, not every day, but still most of the time. However having some relief during a time when I don't have to be especially alert (not driving or working while I undertake these experiments and recover from my latest relapse) has been wonderful, just being more comfortable makes my day, and me!, so much more pleasant.
So now I'm left with the decision of which is the lesser of two evils: unpredictable drowsiness (sometimes enough to send me to bed regardless of time of day), or, persistent pain, discomfort, and the grumpiness that comes with it. Either way, my ability to work a predictable schedule, full or part time, is hampered. In both cases my concentraton is seriously afected. I believe my fatigue, concentration and memory issues are due to a combo of the disease itself as well as side effects of the meds. For now that is not a problem, as I'm off work because of these issues and not under pressure to return. However I struggle with the idea of retirement (meaning LTD) at the tender age of 43. It's there for me if I need it, but how the h*ll do I spend the next 12 years waiting for my husband to retire, all the while my brain slowly turning to much for lack of being challenged.
Another issue with the Elavil is urinary retention. In a few more days on this regime, I should have a good idea of how big of a problem this will be. If it is a big problem, I know I'll have to cut back, this is not one more issue I need to have right now. I find if I drink loads of water on the Elavil, I'm ok, but if I just stick to 4 or so glasses per day plus other fluids, I have a hard time, and don't want to risk UTIs. I can drink loads od water here at home, but it's not feasible when I'm out and about, and then it is so hard to go when I know I should. And occasionally, I can go from retention/inability to go, to sudden urgency, with little warning.
Arrrgh! I don't even know where I'm going with all of this. I guess just wanting to run it past my good friends here, you get it like no one else does including my docs. Just typing this d@mn message has been a chore, and taking me forever. I've found even with the pain relief, my hand is just as clumsy and uncoordinated, not better nor worse as a result of the current regime. Anywt, I'll stop now and ask if any of you have any insight or excperience to share, as I'd really apreciate hearing from you.
BTW my neuro did metnion one more med I oculd try, Wellbutrin. I don't know, yet another different anti-dpressant as pain med, I'm not that optimiistic. If Elavil didnt come with those stupid side effec ts I would be so eternally happy and grateful. So far tough, it doesn't look like they are wearing off over time.
Sorry for all the typos I am sure I'll notice after I send this.
Thanks for your replies.
Ren, I looked up that med and it is approved in Canada, so I'm going to ask my neuro about it. If it has the same efficacy minus the troublesome side effects, I would be very happy indeed. Thank you for the suggestion!
Ess, I hear what you're saying, I just had such a hard time on it, not just the weight gain but the persistent state of feeling ravenous and the subsequent eating that led to the weight gain. It was hard to concentrate on anything because of the gnawing feeling in my stomach. I'm very happy to hear how well it's working for you, and you never know, I may need to try it again once I run out of all options.
Sidesteps, you're sweet, thank you for the hug and well wishes!
Ren, I looked up that med and it is approved in Canada, so I'm going to ask my neuro about it. If it has the same efficacy minus the troublesome side effects, I would be very happy indeed. Thank you for the suggestion!
Ess, I hear what you're saying, I just had such a hard time on it, not just the weight gain but the persistent state of feeling ravenous and the subsequent eating that led to the weight gain. It was hard to concentrate on anything because of the gnawing feeling in my stomach. I'm very happy to hear how well it's working for you, and you never know, I may need to try it again once I run out of all options.
Sidesteps, you're sweet, thank you for the hug and well wishes!
I'm not sick of hearing you complain! I am not familiar with medications so I just wanted to give you a hug.
I hope you feel better.
Hey, deebs. The best thing for me has been Lyrica. I'm at 450 mg./day, slowly titrated up, and it's been a godsend. I know about the weight gain, but I'm thinking it's not absolutely a done deal.
I do think that careful attention to diet can counteract that to a reasonable extent (not that I'm a living example of this!!). But with bad neuropathic issues, sometimes we have to make choices we don't like.
I'm really working on fitness, but if I have to remain my pudgy self as a trade-off for being relatively free of neuropathic pain, that's something I'll just have to accept.
I can understand if you don't feel this way. At 43 I wouldn't have, either. Best of luck in finding a good solution.
ess
I do think that careful attention to diet can counteract that to a reasonable extent (not that I'm a living example of this!!). But with bad neuropathic issues, sometimes we have to make choices we don't like.
I'm really working on fitness, but if I have to remain my pudgy self as a trade-off for being relatively free of neuropathic pain, that's something I'll just have to accept.
I can understand if you don't feel this way. At 43 I wouldn't have, either. Best of luck in finding a good solution.
ess
Hi ,
I can certainly understand the neuropathic pain issues as they ae part of my daily live as well. Yet, another suggestion. Elavil (atriptyline) caused too much dry mouth so I was switched to Pamelor (nortriptyline). It's worked well for me. Perhaps a switch to nortriptyline will help with the drowsiness and retention,,,it did for me, FYI, /elavil is oftten precribsed as a sleepind aid, especially to the elderly, hence yiur drowsiness. I do not feel as drowsy on nortriptyline,
Good luck,
Ren
I can certainly understand the neuropathic pain issues as they ae part of my daily live as well. Yet, another suggestion. Elavil (atriptyline) caused too much dry mouth so I was switched to Pamelor (nortriptyline). It's worked well for me. Perhaps a switch to nortriptyline will help with the drowsiness and retention,,,it did for me, FYI, /elavil is oftten precribsed as a sleepind aid, especially to the elderly, hence yiur drowsiness. I do not feel as drowsy on nortriptyline,
Good luck,
Ren
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