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Thread: Intermittent meds for non daily nerve pain?

  1. #1

    Intermittent meds for non daily nerve pain?

    I am waiting (patiently - sort of) for my medicare part B to kick in so I can see a dr about my nerve pain. I am a T12/L1 incomplete para post 11yrs and had nerve pain a lot the first couple of years - though at the time I didn't know what it was and suffered in relative silence - then it all but vanished. Now it is back I am lucky in that I don't suffer with it daily. I know it sounds silly but it seems to be affected by the weather (?) my stress levels and how tired I am. Then I get a shooting stabbing pain in my left knee and thigh that is like I am being stabbed with an electric cattle prod over and over again every few seconds. A lot of times it occurs in the evening and then I can't sleep that night. Anyway my question is this; I am not a big fan of taking meds and since I can sometimes go a week or two without getting this pain I am hoping there is a med I can take only at the times I need relief. Is this possible? I wish to be well educated in my options in case I end up with a dr that wants to plonk me on daily meds - which I will end up having to refuse. So is there any help for someone like me who wants to avoid daily meds until absolutely necessary?

  2. #2
    That is a great question, Rollerblade. I have thought of this too. Here are the problems that I found.
    Lyrica - if you take it occasionally on an as needed basis, you always get the intense side effects of grogginess/dopeyness and it won't go away as it does if you take it on a daily basis. I guess if you can cope with that , it would work for NP pain.
    The other thing I think about with as needed meds for occasional severe burning pain is sleep meds. When the neuropathic pain is bad, it is too distracting for me to fall asleep. So, that is where Ambien can be helpful. If the NP pain is bad and I take an Ambien, I can fall asleep despite the discomfort and distraction, and the pain is usually gone by the morning, so that is a good thing.
    The 3rd med I would like to mention is diazapam, or Valium. When I get a UTI (bladder infection) , I will get electric shocks in my foot that take my breath away. On these occasions (2 or 3 times a year) , I will take diazapam and I can get through it. It doesn't get rid of the shocks as much as it eases the sympathetic output from my reaction to the pain, I think Dejerine alluded to this in a different.
    So there are 3 meds that I have considered using on a prn (as needed) basis. But I concluded that I can't do the Lyrica prn due to the side effects. So my plan is to find the lowest dose of Lyrica I can take and still get relief. I am trying to drop from 150 twice a day to 75 twice a day.
    Oh, narcs are certainly an option too to use as a prn basis. Any relief from the burning is welcome.
    I followed the barometric pressure for a while on the internet to see if there was an influence from it. I couldn't find one. But the last 2 you mentioned - stress level and fatigue are totally correlated to increase NP pain for many people. I discounted that notion when my pain doc mentioned it but I totally believe it now. I will do better if I can get to bed early and get adequate sleep.
    So there you go. Lyrica, sleep meds, valium or narcs could be used on an as needed basis. Well, that is my opinion after dealing with this issue over the last 7 years....
    Good luck and share with us what you learn and your experience with this. I will be interested in what you find....
    Jon

  3. #3
    Senior Member justadildo's Avatar
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    "I know it sounds silly but it seems to be affected by the weather (?)"

    SO NOT SILLY....and don't let anyone convince you otherwise, you can't fight the pain if you listen to others instead of your body..it won't lie to you..try lyrica...i use it during weather change...might work for you, worth a try

  4. #4
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    I hate using narcotic drugs, and the side effects that arise. This works for me. Brew a nice hot cup of your favorite herbal tea, laced with your favorite shot of booze. Rum or burbon helps me. Brew the tea in a large mouthed mug. Use a cup large enough that your nose can enjoy the steamy bouquet of both. There is something about the heat, steam, and aroma that is just so very relaxing. It makes the pain tolerable, and my body relaxes.

  5. #5
    Quote Originally Posted by justadildo View Post
    "I know it sounds silly but it seems to be affected by the weather (?)"

    SO NOT SILLY....and don't let anyone convince you otherwise, you can't fight the pain if you listen to others instead of your body..it won't lie to you..try lyrica...i use it during weather change...might work for you, worth a try

    I agree, cold greatly affects my foot pain. I live in freezing Wisconsin and it doesn't take long with me outside on a cold day for my feet to be on fire from the cold even if i'm not cold anywhere else. When i get home and if my feet are cold/hurting, i turn on my space heater and plop my feet in front on them. My lord the heat feels feels splendid as it starts warming my feet.

    I mentioned in another thread that i take Oxycodone, the weird thing that it does usually is it kinda makes my feet feel warm which in turn dulls the pain.

    In general though, as each year passes since my injury, my tolerance for cold weather gets lower and lower while i crave warm weather. I used to love the changing seasons of Wisconsin and now i hate them except for when it's summer. I keep the heat on so high in winter that my daughter jokes that i should be 80 years old and i sleep with a heavy sweatshirt on along with being under two comforters. It's ridiculous how easily i get cold now.

  6. #6
    This is an old post. Looking for more info on this. I also find it impossible to sleep when the jolts are intense. There must have been some kind of study done on NP, but I'm not finding anything. I've delt with pain, this stuff is truly bizzare and the jolts come in alot of different forms. I find this really interesting stuff and would like to hear about others who have this, and how they deal with it.

  7. #7
    Going to sleep is hard with the 'distraction' of burning extremities or electric shocks. It sounds like a standard torture method of sleep deprivation that is employed around the world to wear prisoners down and get them to talk.

    I need to use ambien to drive me into sleep if the neuropathic pain is keeping me awake which is heightened once the lights are out and it feels like "someone is touching a cattle prod to my big toe". I am fortunate that this can pull me into sleep. I know others here are not that lucky.

  8. #8
    Senior Member ~Lin's Avatar
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    Nerve pain is hard to treat. The typical nerve pain meds (lyrica, cymbalta, neurontin) typically need to be taken daily, so if you're like the OP and want to avoid that its going to be even harder. I think narcotics would be the only option for severe intermittent pain control.

    But also... Have you spoken with a neurologist or neurosurgeon? Especially if the issue is localized, and you're not experiencing it in many places. Surgery would be an extreme treatment, but can be an option for some types of nerve damage/neuropathy depending on the cause. I was a lucky one there, I have neuropathies in my ulnar nerves. I had surgery after medication failed to control those cattle prod pains on the left. I have not felt them on the left since the surgery, but have dealt with the more minor types of nerve pain. I occasionally experience them on the right and may have to have the same surgery at some point. My issues were caused by ulnar nerve damage, and so they performed an ulnar transposition to move the nerve to prevent further damage, and during the surgery cleaned off scar tissue surrounding the nerve which made a huge immediate difference.

    Sleep is definitely a big issue with pain. I've been kept awake for days at a time before due to pain, eventually I can't take it anymore (or someone can't take watching me take it anymore) and I end up in the ER where they give me something very strong to take the edge off enough to finally sleep, and bring the pain cycle better under control. A strong sleep med like ambien could be a good option when the issue is not frequent. When it is, something like trazadone might be a better one. Its difficult with chronic sleep issues as you become tolerant to the medication and must frequently change doses and meds. If its intermittent, a strong med will keep its strong effect.

    A pain management specialist is always a good idea for pain that is interfering with ones life. There are many other methods such as TENS machine or nerve stimulator that can "mess up" the signals of nerve pain. And if weather is an issue, keeping warm and using heating pads, hot water bottles, heated blankets, and so forth can help. Also I know that weather can exacerbate CRPS (chronic regional pain syndrome/reflex sympathetic dystrophy) so looking into things that help nerve pain or at least decrease the weathers influence on it for those patients might help.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  9. #9
    Very good information. Thank you.

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