Nerve pain and nothing works!!!!
AnonymousMarch 21, 2007 at 8:53 am
Hello Family, I am here again with another question. Monica is still taking the 750mg vicodine which is only half at night and half in morning. Yes still taking the predisone too. She received a few samples of neurotine from the dr she has taken 2 at night to help with sleep/pain along with the elavil which she says does help her sleep. But if she takes the neurotine during the day she becomes very lathargic(spelt wrong I know) and falls asleep. Is there any meds that due help for pain? The burning numbness and tingleing in her legs hasn’t changed even when she had her first 2 IvIg’s even tho it did help with her falling down all the time. Just trying to be a good mother and seeing what I can find out to make her a bit more comfortable.
AnonymousMarch 21, 2007 at 9:30 am
hi dawn, do you know what mg the neurontin was? it might take a few days to a couple weeks for monica to see good relief from neurontin. it usually doesn’t kick in until it gets built up in the system. it can make her drowsy, but if the dose is low to start and ramped up as she can handle it, neurontin usually helps. there is also the sister drug to neurontin, its called lyrica, it is taken in smaller doses and fewer times a day, costs more and might not have all the drowsy sideeffects that neurontin has. sometimes antidepressants are given to help control pain also. its really a trial and error type of thing with pain meds. what works well for one may not work well for others. over the counter meds usually won’t work on nerve pain, and sometimes narcotics won’t work either. hope they find the right combination for monica soon. give her a Big gentle Hug for me. take care.
AnonymousMarch 21, 2007 at 10:20 am
Hi Dawn: It is defnitely worth the effort and time to try neurontin. It does make one sleepy but usually that passes with time and it helps most people so much with the pain it is worthwhile. If the drowsiness does not pass with time then another medication might be needed, but a slow gradual build up with neurontin might prove effective while the side effects might well diminish. Jeff
AnonymousMarch 21, 2007 at 11:18 am
Many in this “Family” take neurontin for the pain. Yes, she will be more sleepy during the adjustment phase. It is not unusual to need upwards of 3800 mg/day and that is a safe amount. Also, Monica is in a very active healing phase and her body requires more rest/sleep for this. Some of our family would sleep upwards of 18hrs/day ~ me included!! Even if you can’t “see” it, the body is healing. The nerves heal at a very slow pace. As Gene has always told us: GBS ~ getting better slowly.
Thank you for being such a helpful mom 🙂 God bless.
AnonymousMarch 21, 2007 at 8:12 pm
I was reviewing some documents on my computer and came across this explanation for different methods of dealing w/neuropathic pain that may be of interest.
Anticonvulsants work by blocking calcium channels; work best on sudden, lancinating “shock-like” pain
Tricyclic antidepressants work by blocking sodium channels; most effective on continuous burning pain
Full article can be found here:
Hope this helps.
AnonymousMarch 21, 2007 at 9:26 pm
I was in so much nerve pain that I had no life-just the sofa. I was on major narcotics as no one know what I had (or cared). After 2-3 months of IVIG-that’s 6 infusions a month-the pain starting going away. It’s been 2 full years of the same infusions and life is better. I must not over do or I pay big time in pain/fatigue.
How many IVIg treatments has Monica had?? I found all the meds folks use on this Forum didn’t work for me-so I’m still on narcotics but it mostly works. I asked my neuro for samples of Lyrica/Lamictal/Provigil and got them thank goodness. Saved me lots of money on meds that weren’t for me.
May you find a way for Monica to feel better. It’s hard to see a loved one hurt.
AnonymousMarch 21, 2007 at 9:55 pm
I agree with taking the Neurotin. She may be fatigued anyway. That is part of life. We have to learn to adjust our life. It will not be the same before GBS. I take 600 mg. dosages. I do take 1200 mg. a day and it helps with the tingling and burning. Up the dosage slowly. I really think she should take it. We GBSers sleep alot. Oh how I wish I didnt have too but I have to be thankful I have full use of my extremities and bodily functions! Could be worse.
AnonymousMarch 22, 2007 at 1:04 am
I also agree with taking the Neurotin. It may take up to one week to start to feel any benefit but it does work. My doctor told me to try to go off after my first and only IVIG. So because I didn’t know any better I listened to the Doc…by the second night I was up all night in tears. I got up and took the gabepentin and it took another two days before I started to feel less pain. Tell Monica to try to stick with it for a couple of weeks. Hopefully it will help her.
AnonymousMarch 22, 2007 at 5:38 am
I think you should stick with the neurontin or try Lyrica. I have been taking Lyrica and it has worked for me. However it has the side effect of causing some weight gain. This is only a small problem in comparison to the pain. I am in the process of changing from Lyrica to Topamax but my pain is returning and I may just bite the bullet and return to Lyrica. The pain is not fun and a few extra pounds is a small price to pay for the relief. Just keep trialling different things until you find the one that suits and stick with it.
AnonymousMarch 22, 2007 at 7:28 am
I’m new to the GBS family (Jan 07) and the neurontin does take some getting used to. I’ve had 5 IGIV’s in the hospital and 2 cince I’ve been home but the neurontin is the only thing that’s been good for the pain. I started with 300mgs 3 times a day that 400 than they upped it to 800mgs 3 times a day and it knocked me on my butt. They reduced it down to 600 and things are looking better. The body needs time to adjust to it and you have to take it slow. It’s a slow road and things do get better, just not fast enough.
AnonymousMarch 22, 2007 at 7:01 pm
interesting how different meds work for different folks. a neurontin pill [600 mg] always worked for me 3 1/2 hours after i took it, right from the getgo. as many of us know, it was a lifesaver from the excruciating pain. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMarch 23, 2007 at 9:36 am
:confused: I haven’t heard of anyone mentioning Cymbalta. I could tell a drastic change in my constant burning and spiking pains. My Neuro has me on the Lyrica and Cymbalta. I can feel that it has helped. It took a few days on each to get the levels built up but I think they are working pretty good. I had a Caudal Epidural last week and it has helped alot also. But thats mostly with my back and hip pains. If your walking weird and bending diffrent it can cause other pains in muscles that aren’t used to moving in that manner. I was just wondering.
AnonymousMarch 23, 2007 at 12:08 pm
[QUOTE=Thray]:confused: I haven’t heard of anyone mentioning Cymbalta. I could tell a drastic change in my constant burning and spiking pains. My Neuro has me on the Lyrica and Cymbalta. I can feel that it has helped. It took a few days on each to get the levels built up but I think they are working pretty good. I had a Caudal Epidural last week and it has helped alot also. But thats mostly with my back and hip pains. If your walking weird and bending diffrent it can cause other pains in muscles that aren’t used to moving in that manner. I was just wondering.[/QUOTE]
I am also taking Cymbalta. I found that a double dose (one, twice daily) helped more than the single dose – I read the info on the Cymbalta site that suggested that some people with neuropathy did get more relief from a double dose). But, since I started Neurontin I cut back to a single dose of Cymbalta, because Cymbalta also plays havoc with BPH.
AnonymousMarch 27, 2007 at 7:14 am
Hey Dawn! Has she tried Lyrica, Ity helps me sleep, and I know a few people here that take it during the day. I had problems with neurotin making me unable to function. Lyrica I can function while taking it during the day.
I can actually take Lyrica while I work.
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