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?

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.

[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)

[QUOTE=canagirl;1137517]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.

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.

[QUOTE=canagirl;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.

[QUOTE=groucho;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

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)

[QUOTE=canagirl;1137544]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.

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.

I am a little concerned about staying on the nortriptyline because it is increasing my involuntary outward muscle jerks (ones people can see, not ones that I can only feel) and I am having different "types' of these jerks (hard to explain). Worried that it's doing something bad and permanent and that may worsen.

Isn't the jerks how this all began?

I'm confused at this point. You've stated that this began (even with medications) over a year ago with twitches and jerks and that you've been through 4 neuros. Can't the jerks just be progression if you've already had them for so long? How do you know (or think) they are the nortriptyline?

I'd stop making changes to your medication until the doctor gives advise. Your body doesn't have a chance to figure out what it's supposed to do with what you're giving it. Your best bet for pain relief will be the combo of gabapentin and nortriptyline and hopefully your doctor will tell you the appropriate doses of each. I think you said this is your PCP, not neuro. I hope he's comfortable addressing this for you without just sending you on to another neuro and wasting more time for you.

Someone will correct me, if I'm wrong, but I believe neuropathy itself can cause muscle spasms. If this is any help to you, the first month or so I was on Nortriptylene, My hands shook as bad as someone with Parkinson's disease. It was embarrassing to have a store clerk help me count out my change for a purchase. I guess the desire to be in less pain was enough for me to stick it out and most of it subsided. I still have a bit of a tremor in my left hand that is a bit worse than the tremor I had when I smoked cigarettes. Quit in 2008 with the help of Chantix, about 3-4 years before the neuropathy.

Hi en bloc,

Yes, twitches and jerks are how all this started. U could be right and the increase in jerkin and slightly different form could just be progression of what I already had. It just seemed to coincide with the nortriptiline. I am sticking with the nortryptiline cus I can feel it's doing something it's just no where near enough. I will add the gabapentin and hope for the best. I will stick with the combo for a while to give it time.

I know it might be a bit early to add a drug ( only on nortriptiline for almost 3 weeks) it's just that I've gotten conflicting info on how long it's supposed to take to work. I don't know...i am lost and frightened. The silly thing is , I have a feeling that even if I get good relief, my mental state is going to still be a mess.

My neuro said 4-6 weeks for nortriptyline to reach FULL effectiveness. You may still get a little more improvement....
:hug:

Just came back from dr... He wants me try t3 first for 5 days. Then we can try gabapentin if it doesn't work. He also gave me a compound cream to put on the acupuncture sites. He saw the marks that are still on my body and thinks that maybe the muscles are spasming around my nerves. I have another appointment in 5 days for follow up.

What is t3?

Sorry, it's Tylenol 3 ( here in canada it's a prescription drug)

Is that Tylenol with Codeine?

If it works, is he actually considering keeping you on Codeine until this resolves (which may be years)?? That's really unusual to start with a narcotic and to go with more likely drugs that will help, second. Not sure how much he Rx'd for you, but large or frequent doses of Tylenol are horrible for your liver.

At least you will know if narcotics will help, though. but I wouldn't stay with that if it helps...you should still try other options first.

[QUOTE=en bloc;1137681]If it works, is he actually considering keeping you on Codeine until this resolves (which may be years)?? That's really unusual to start with a narcotic and to go with more likely drugs that will help, second. Not sure how much he Rx'd for you, but large or frequent doses of Tylenol are horrible for your liver.

At least you will know if narcotics will help, though. but I wouldn't stay with that if it helps...you should still try other options first.[/QUOTE

He prescribed me 40 pills and wants me to try taking them 3 times a day for 5days. I'm not sure what his plan his... He said if that doesn't work we can try Gabapentin. I took the Tylenol last night cus I needed pain relief, I had a bit less pain but not enough to keep on it for an extended period of time. I'll take it for the 5 days until I can back in to see him and say "ok, I tried it. Not working, so PLEASE advise me on Gabapentin. He also gave me a compounded cream to put on the acupuncture sites, and that actually worked and gave me the most pain relief (compared to nortriptyline, and Tylenol 3). However, I have already used up half of the tiny container it came in so.....
Sometimes he lets it slip that he feels that this is anxiety b/c by mri, emg, and bloodwork are normal. Other times times he says it definitely sounds like neuropathy...So who knows. Just have to wait for the skin biopsy on may 20.

I'm not an expert at this (MrsD would know more), but Codeine is not nearly as strong as pain meds like Percocet (Oxycodone). I doubt 30 mg of Tylenol 3 is even equal to 5 mg of Percocet. Therefore, I'm not surprised it didn't help.

But like you said, finish the 5 days and go back for the next suggestion (Gabapentin).

I'm glad you got some relief from the compound...something is better then nothing.

What is in that compound cream?

I find it puzzling that you can see the acupuncture holes/location after all this time. Are they red, inflamed, raised, discolored, what? Can you photograph them and post them here?

T-3's are 30mg of codeine. They have a slow onset because the codeine has to be activated in the liver into a morphine analog. I personally find them very strong but then I am an opiate naive person. When I had my C-section-- a long 12 inch vertical incision, I was given T3's for the pain. People who take other opiates, would find them very weak and ineffective for the most part. 2 of them at one time give 60mg of codeine, and that is stronger, obviously. Did your doctor write for 2 -- 3 times a day? 40 would be then a 3 days supply just about. The over the counter codeine/tylenol products in Canada have 8mg of codeine in each tablet.

[QUOTE=mrsD;1137840]What is in that compound cream?

I find it puzzling that you can see the acupuncture holes/location after all this time. Are they red, inflamed, raised, discolored, what? Can you photograph them and post them here?

Yes, my doctor was surprised at being able to see them as well. they are red and raised. They look like small red bumps. the cream has amitriptyline, and two other ingredients (I'd have to look at the bottle at home). at least one of the two is an anti-inflammatory.

Red and raised suggest infection/inflammation to me.

They should not be this obvious after all this time.

Can you take a photo of them?

T-3's are 30mg of codeine. Canada have 8mg of codeine in each tablet.[/QUOTE]

Wow, I wonder why in the US T-3's have 30mg of codeine but in Canada they only have 8mg. That's a big difference. Maybe that's why they didn't help much.

The bottle said to take 1 tablet 3xday for 5 days. My doctor ALWAYS prescribes more pills than I need.

Wow, I wonder why in the US T-3's have 30mg of codeine but in Canada they only have 8mg. That's a big difference. Maybe that's why they didn't help much.

The bottle said to take 1 tablet 3xday for 5 days. My doctor ALWAYS prescribes more pills than I need.[/QUOTE]

I think you misread my post.

T-3's in US have 30mg of codeine in them. In the US we do not have a tablet with codeine at all that is OTC.

The OTC codeine in Canada that does not require an RX has 8mg of codeine in them.

Are you sure you know what your RX in Canada has in it? It should say on the label of the RX or you can ask your pharmacist for clarification.

In the US T2=15mg codeine and 325mg of Tylenol
T3= 30mg of codeine and 325mg of Tylenol
T4= 60mg of codeine and 325mg of Tylenol-- All are RX only.

Red raised sure does sound like infection or inflammation. Makes me think of Gutatte Psoriasis too (NOT saying it's that!) where the skin is having an immune response inflammatory thing. Unless you just make lovely raised red scars like I do :rolleyes: Do they respond to anything like Benadryl or steroid cream?

Careful on the narcotics, over time they can actually increase sensitivity to pain through activating the glia which make up 80% of our nervous system. That's part of why they are often avoided for CRPS.

:hug:

[QUOTE=mrsD;1137840]What is in that compound cream?

I find it puzzling that you can see the acupuncture holes/location after all this time. Are they red, inflamed, raised, discolored, what? Can you photograph them and post them here?

Cream says: diclo 10% + ami2%diffu. I don't know what any of that means other than the amitriptyline cus I recognized the name when he said it.

Tylenol 3 bottle simply sàys Tylenol 3 doesn't say how codeine and Tylenol is in each tablet. I'll have to call the pharmacy.

How do u upload a picture to a reply ( sorry not the most computer literate) I have been thinking about the possibility of infection like u said. Maybe that would explain the throbbing and internal heat that I feel. But, those two symptoms are body wide ( or maybe just feel body wide bc there were so many sites, maybe it just feels like that and I just can't tell the diff? It does seem stronger at the sites) Not all the tiny bumps r red though, some r just tiny bumps, some r red tiny bumps, some sites I don't see anything.

Thanks mrs d

Hi canagirl,
You can add images as an attachment.
This is from the FAQ - Frequently Asked Questions. FAQ - attachments

Neurotin stops the tingling but overall causes me more pain and makes my feet feel like they're about to explode. I quit taking it. The tingling is much more bearable.