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Nerve pain meds and breakthrough (BT) pain - how do you remedy?

aimlessaaimless Posts: 372
edited 06/11/2012 - 8:22 AM in Pain Medications
Question for any of you taking nerve pain meds (neurontin, topomax, amitriptyline etc.)

I'm taking Topomax and finding it works well for my nerve pain, but I do have breakthrough (BT) pain if I walk too much (have not figured out my limit, but sadly, its not a whole lot). I can take additional narcotic-class or anti-inflammatory pain meds for other BT pain i.e. muscle or low back, but I can't just up my intake of Topomax, what do others do in this situation?


  • :) hi! what about taking an extra pain pill and laying down with some ice? check with your pharmacy or your doctor of course. nerve pain is very painful!! Jenny :)
  • Thanks Jenny - I am not sure if its the walking or something else, I walked about 3/4 mile yesterday and half of it up a steep hill. Distance was no different but the hill... anyhow my leg still hurts, but could be something else, I assume its the walking.

    I see my doc on Wednesday so I will ask if I can take an additional pill if absolutely needed, but ideally, yes - would like to know my limit!! :) so I can work on increasing it. Pain makes me crabby, it has ruined yet another weekend. Okay thanks for letting me vent.
  • My doc has me on Neurontin and Ultram. For breakthrough I have Tramadol and Tylenol. The Tramadol seems to increase the effectiveness of the Tylenol. It was something he approached me with and it works for me. Good luck and hope you find some relief. BTW: mine is nerve related leg pain also.
  • Hey -- Great Question!

    I have the same issue! I too take Topamax and you can't just take more when you have increased nerve pain! I don't know about you, but the narcotic pain meds just don't seem to touch nerve pain as it is just so ungodly bad!

    I can't offer too much as I'm in the same boat as you -- but here's what I've tried and helps some.....a heating pad (I don't know why but HEAT works better for me than ice!), B12 (in a routine blood test my dr noted my B12 was on the lower end of normal & it has something to do with nerves -- lower levels can cause nerve pain, not quite sure on that -- and he gave me a series of 6 B12 shots and that seemed to help so I take B12vitamins that dissolve under the tongue every day since some people don't absorb it well from food and/or just from swallowing a vitamin tablet whole), I have a prescription for Celebrex that adding a tablet sometimes helps (if you can take Advil or Naproxen they are over the counter -- again, it seems to work well with the pain meds & topamax), lie down in a position that takes the pressure off the nerve (my nerve damage is L1/L2 and the end of the spinal cord so it is the WORST in the lower right quadrant of my abdomen, right lower back and top front of my thigh so if I lie on my back with my right leg bent with my foot by my left knee with a pillow under it that takes the pressure off of that nerve -- my physical therapist taught me that -- if your nerve is different you might hafta wiggle around til you find one)....and that might be it.

    But to be honest -- these only take the edge off...nerve pain is just so bad! I know how you feel -- I'm so sorry you're in so much pain -- and I feel bad for being selfish -- but I'm glad I found someone that has the same issues! One day the pain is manageable then out of the blue -- you just can't get a break!!! Well -- I'm there right now & I know I'll try everything I listed above and it's still going to be a bad nite. Oh -- there is one last thing....crying! :)))

    Hey -- hang in there -- hopefully you will get some really good tips and if I think of anything else -- I will definately post them!!! Write me & let me know what you've tried and how you're doing -- again, I hope you feel better!!!!

  • And the camaraderie :)
    Yes, one day I feel great, the next is a disaster. I see my surgeon tomorrow, after digging around I found that there is potential to increase my dosage of Topamax from 100mg/day to 150mg, so I'm going to ask him about that first to see if that might do the trick. I will also see what he says re: BT pain, and what he suggests. I take a multivitamin but probably not enough B's in it, I will definitely look into that as well.

    My pain is usually at its worst in the morning, so laying down is not always an option. But the crying is a good distraction, I'll credit you that!! Hang in there, hope you feel better as well.
  • That is what I call it.....the Lyrica works but there are days that it breaks right through....I went to PT yesterday and they hooked me up with a tens unit, too early to tell but it seems to work, if nothing else it distracts the pain. Heat is also my friend, when my arm is aching I just wrap it up in a heating pad. I would take the other aches an pains any day over nerve pain.

  • Hey Again!

    Yeah -- it IS evil -- and today I'm adding SUPER evil!!! :))) Melissa, I just tapered up to 200 mg of Topamax a day so maybe 150 might not be a problem with your doc! I take 100 in the am and 100 in the pm! It makes it kinda hard for me to sleep, but that's ok maybe I'll get used to that!

    I had to start back to work a couple weeks ago in the office so I can't really lie down either and so the super evil nerve pain does NOT like that at all! I work for a big company and they have an area where lactating mothers can go to pump -- so I asked if I could go there to lie down maybe 15 minutes as needed -- and they acted all put out about it!!!! So I just let it go....grrrrr....I'm NOT going to look or anything...sheese...I'm just trying not to pass out from pain!

    Oh well -- Melissa & Sharon you might appreciate what my neurosurgeon told me when he saw he badly I was suffering from the nerve pain and he knew nothing was touching it.....he said: "Well look at the bright side....Nothing in your life will EVER hurt more!" :)))

    Sharon -- let me know how the TENS works & Melissa let me know what your doc says!!!'

    Later -- gotta get back to work!

  • What you doctor said sounds like something my doctor would say.....when I went back to see him at the 4 week checkup after revision surgery.....I'm telling you, give birth 2 times all natural...nothing...no epidural....that nerve pain from the revision made me want to kill myself. I called him a sadist....he just laughed and said "I told you it would be rough".....I would love for him to feel that pain for just an hour of his life so he would know.

  • I forgot about the tens unit....it does seem to help...ask for one because it can't hurt...

  • Instead of upping the Topamax, he's adding 300mg of Neurontin in the evening which should help me in the mornings since they are the worst for me. If it does not help, he will increase the Topamax dosage. Its *working* but its just not *enough*.

    Karen - use the quiet room in your office anyhow. I mean really, its more cost effective than having you call in sick. I work for a big company too, I'm lucky because they are somewhat accommodating (because they don't want me to call in sick, lol)

    Lisa - give the Topamax a try. Everyone reacts a bit differently, I'm having some success, you need to mess around with the dosage and combinations until you get it right, but worth a shot. Be prepared, everything has an interesting metallic aftertaste, you may have some short-term memory loss, but if you can kick the nerve pain its worth it. Those are my only side effects, it does not make me tired or hyper.
  • dilaurodilauro ConnecticutPosts: 9,714
    I figure I would just post the link to my post discussing The Blend of Medications and Treatment to Manage Pain

    The Blend
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Hi Aimless (what a cool name!)

    It seems to me a cocktail suck it and see of all the therapies and don't loose the will on the way!

    I too am in seach of a magic combination. I have breakthrough EVERY day and consider myself lucky to get a few hours clear. I do pace myself and am frustrated of playing with the meds, balancing side effects with are they actually working?

    I will read the link carefully above as well.

    Oh and I personally get a lot of relief from ultrasound. Don't know why and have got mixed massges as whether I can actually buy one for home use. Anyhow, worth a try.
  • Oh wow! I just had the most wicked case of Deja vu. No kidding I have written this response before. Whoa!

    Anyway, I took a matt and would go into the stock room and lie down for 15 minutes a few times a day. That allowed me to stay at work and be productive. My boss was smart enough to grasp that, so I was lucky.

  • And you are so right - isolating what you did to have that good day is a mystery to me as well (and probably all of us!) I have since added a small dose of a 3rd med for nerve pain, and finally doing well enough to do PT exercises again. Hope to start walking more too but one thing at a time.

    But I love the list, I'm inspired to think about my own blend... make sure I'm giving all therapies equal time.
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