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-   -   Does anybody stop meds and find out pain less than before? (https://www.neurotalk.org/peripheral-neuropathy/219195-stop-meds-pain.html)

canagirl 04-22-2015 06:39 AM

Does anybody stop meds and find out pain less than before?
 
I can say the nortriptyline is working now. I am still in alot if pain ( too much for me to handle) but it is dulling things. I got my husband to rub my back yesterday a little and didn't have much burning. Thinking I must be healing.. I got him to massage it a lot last night, big mistake!!! I woke up with so much in my back and arms and legs. Why did I do that? Ugh, I feel like I just damaged my physically injured nerves more.

Ok, question. Does anybody go off their med to find that their pain has lessoned compared to when they first went on? Or a it usually the other way around?

en bloc 04-22-2015 08:25 AM

Why are you thinking it's the Nortriptyline? Don't you think the improvement must be related to adding the Gabapentin? What is the current dose of each now?

To answer your question: I think we probably all have stopped or backed off the dose of medicine we take when feel thing s are working...just to test to see if the pain is as bad as it was. It usually is. But it's normal to test this just to see if the nerves have 'healed' or if it's just the medication helping.

I don't think you are "damaging" your nerves in any way. Your actions probably just stir up the nerves and you see how sensitive they are to stimuli.

canagirl 04-22-2015 09:11 AM

[QUOTE=en bloc;1137504]Why are you thinking it's the Nortriptyline? Don't you think the improvement must be related to adding the Gabapentin? What is the current dose of each now?

My dr was sick yesterday and so my appointment was cancelled and scheduled for today. I chickened out on the weekend and didn't want to start the gabapentin without his advice. So I'm not on the gabapentin yet. I decreased nortriptyline to 40 and will go to 30 tonight.

I'm sick of this. I don't know how any of you are still here. I can't open a door without my hands hurting, I can't sit, lie down without my back neck and head hurting immensely ( on top of the regular hurting of every other body part)

JoannaP79 04-22-2015 09:35 AM

[QUOTE=canagirl;1137517]
Quote:

Originally Posted by en bloc (Post 1137504)
Why are you thinking it's the Nortriptyline? Don't you think the improvement must be related to adding the Gabapentin? What is the current dose of each now?

My dr was sick yesterday and so my appointment was cancelled and scheduled for today. I chickened out on the weekend and didn't want to start the gabapentin without his advice. So I'm not on the gabapentin yet. I decreased nortriptyline to 40 and will go to 30 tonight.

I'm sick of this. I don't know how any of you are still here. I can't open a door without my hands hurting, I can't sit, lie down without my back neck and head hurting immensely ( on top of the regular hurting of every other body part)

Canagirl, if you really want some relief I think the gabapentin is the key thing for you to try. I know you are concerned about meds but I have tolerated it very well and usually react very badly to meds. I have hypersensitivity to many drugs but this has been absolutely fine.The only side effect has been drowsiness - this wore off after a few weeks. Although I'm not cured by any means, it has reduced the pain from constant agony to much more bearable. Please just consider starting it in order to gain some relief.

canagirl 04-22-2015 10:16 AM

Please just consider starting it in order to gain some relief.[/QUOTE]

thank you. I will start it. I was just worried about starting it while on a high (ish) dose of nortriptyline without talking to my dr first. I have an appointment today so hopefully he agrees and I will start it tonight.

groucho 04-22-2015 10:40 AM

[QUOTE=canagirl;1137517]
Quote:

Originally Posted by en bloc (Post 1137504)
Why are you thinking it's the Nortriptyline? Don't you think the improvement must be related to adding the Gabapentin? What is the current dose of each now?

My dr was sick yesterday and so my appointment was cancelled and scheduled for today. I chickened out on the weekend and didn't want to start the gabapentin without his advice. So I'm not on the gabapentin yet. I decreased nortriptyline to 40 and will go to 30 tonight.

I'm sick of this. I don't know how any of you are still here. I can't open a door without my hands hurting, I can't sit, lie down without my back neck and head hurting immensely ( on top of the regular hurting of every other body part)

Please bear in mind that if you go back to a higher dose of nortiptylene at a later date, you will have to wait for pain relief to build up, at any dose. It took me a couple of months to reach the plateau of pain relief at an increased dose of Nortriptylene. I also take mine in a split dose, and if I miss a dose, I know it. It takes me about a week to get my level of relief back. With EITHER drug, you are going to have to give it time to judge it working for you & if it does work for you it is certainly is NOT a sign that the drug is healing you. It is simply decreasing your pain.

canagirl 04-22-2015 10:49 AM

[QUOTE=groucho;1137542]
Quote:

Originally Posted by canagirl (Post 1137517)
Please bear in mind that if you go back to a higher dose of nortiptylene at a later date, you will have to wait for pain relief to build up, at any dose. It took me a couple of months to reach the plateau of pain relief at an increased dose of Nortriptylene. I also take mine in a split dose, and if I miss a dose, I know it. It takes me about a week to get my level of relief back. With EITHER drug, you are going to have to give it time to judge it working for you & if it does work for you it is certainly is NOT a sign that the drug is healing you. It is simply decreasing your pain.

thanks groucho. I might be jumping the gun with nortriptyline. I was at 50 (for two nights only) and It's been almost 3 weeks. While I did notice that some symptoms were more faint, I did not get the level of pain relief I need (I don't know if I ever will) Who knows...maybe the amount of relief I got is what should be expected? But I'd like to try something else to see if I can get better relief because I can't cope in this much pain. I will stay on the nortriptyline and add gababpentin. So hopefully, If gabapentin isn't doing much and I decide to just use nortriptyline it won't take too long to build up to a higher dosage (didn't notice the difference of dropping from 50 to 30 though).

Also, I just wanted to be clear. If you miss one dose you have increased pain and it takes you a week to get rid of that increased pain?

Thanks

canagirl 04-22-2015 10:53 AM

I realize that these pain relief drugs can't heal me. I was just hoping that my nervous system (and maybe other peoples when they first started) is so ramped up (no denying that it is) that it is causing at least part of this crazy pain. So, I was thinking if I do find something that gives me relief, my mental state might calm down and then if I take a drug holiday some day I might notice that the pain isn't as bad (because some of it was due to stress). I was hoping other people may have noticed that this was the case. Just being hopeful (or trying to at least)

groucho 04-22-2015 12:19 PM

[QUOTE=canagirl;1137544]
Quote:

Originally Posted by groucho (Post 1137542)

thanks groucho. I might be jumping the gun with nortriptyline. I was at 50 (for two nights only) and It's been almost 3 weeks. While I did notice that some symptoms were more faint, I did not get the level of pain relief I need (I don't know if I ever will) Who knows...maybe the amount of relief I got is what should be expected? But I'd like to try something else to see if I can get better relief because I can't cope in this much pain. I will stay on the nortriptyline and add gababpentin. So hopefully, If gabapentin isn't doing much and I decide to just use nortriptyline it won't take too long to build up to a higher dosage (didn't notice the difference of dropping from 50 to 30 though).

Also, I just wanted to be clear. If you miss one dose you have increased pain and it takes you a week to get rid of that increased pain?

Thanks

You're definitely NOT receiving full benefit of the Nortriptylene at just 2-3 days of a dosage. You need to wait 6-8 weeks from the first 50 mg dose, not the 10 mg. Since your massage stirred up your nerve endings it's not possible for me to suggest what you should be feeling. Meds or no meds, you get those nerves stirred up too much & you'll pay for it. Regarding me missing a dose, if I do, it takes me a week to get my feet feeling the way they did prior to my skipped dose. I don't loose all the relief, but there is a noticeable difference for a few days. I guess I can't say it better that that.

bluesfan 04-22-2015 12:42 PM

Hi canagirl
Pleased to hear you're finally getting even a tiny amount of pain relief. Groucho's right - you've got to give the medication time to work. What's easy to forget is that medicine taken in oral form acts differently to say IV or injection. It has to go through a process of absorption and then act at a cellular level before it can have any effect and even at a cellular level it takes time for the body to accumulate enough to provide consistent efficacy.

It's good you have your doctor's appt. today and he can sort out your meds. and doses. Stick with it - I'm hoping the nortriptyline & gabapentin combo work for you.


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