Hi Gang, Anyone had success with Tegretol for neuropathic pain? Neurologist prescribed this for me?
Question posted by MacIntosh12 on 24 Aug 2013
Last updated on 12 February 2025 (10 weeks ago) by Miss Owl
and I feel a bit leery about it, there are just SO many side effects! And some really scary ones at that. I've been feeling exhausted lately, will Tegretol just exacerbate my exhaustion? I used to be a very high energy person, but no longer, much to my chagrin! My energy has taken off with my sense of humor and both are holding me for ransom! Help, please?
My neuropathy has been quite bad. It's stinging, burning, and weird electric shocks. Plus some stabbing pains that I can't explain, either. My Neurologist has said that ALL of my neuropathic pain is caused by Spondylolisthesis. I may end up on a surgeon's table, but in the meantime I want to mitigate the pain as best as possible. This is no way to live, in chronic pain - which most of my friends on this great site also experience.
ANYONE that has even tried Tegretol, anyone with experience with this med would be so very appreciated, IF you want to share your experience with me, and all the folk that read our posts. Thank you in advance, Lara P.S. I'm leaving for the day (hope my energy doesn't give out today!) and will try to get back online later tonight, if not I'll be on in the morning. Again, I thank you!!
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10 Answers
MI
Miss Owl
12 Feb 2025
I had to go on Tegretol in 2008 because the Dilantin I had been taking went against my chemo treatment drugs. But instead of putting me back on my Dilantin when my breast cancer treatments were over, I slipped through the cracks I guess you could say and they just left me on the Tegretol. Last 2024 noticeable side affects started happening... but I just blamed other things I guess. I started losing weight last year and then my appetite started fluctuating and my energy level and then not sleeping good and then it was a new year. I am CNA-23Years/Med Tech 7 Years... I had to go the hospital 2 1/2 weeks ago because I had a severe case of the flu with high fever. Well I ended up going to the hospital again while I had the flu I couldn't seem to get my breath... my chest was clear and X rays were good... they did a lot of blood work.
Found out my Tegretol level was a bit high again and that I now have one of the biggest side affects of Tegretol going on and most dangerous my white blood cell count is 2.7 and my platelets are 75. And there's liver fluctuations to. My weight is down to 120. And tiredness has kept me sleeping a lot. I have had to stay out of work, which isn't good. So I'm having to stay inside my Apt till this Feb 13th, 2025 that's when I see my neurologist. I didn't have to start seizure meds till I was 14... I just recently turned 60 about 2 months ago. I've probably had enough grand mal seizures in my life time to count on both hands..and that was basically due to sowing my wild oats when I was younger.. those days are over. You really have to be proactive in any type of health care you get this day and time. I know I will be making them take me off of this Tegretol it's kinda scary but a relief too... I just have suffered with so many side affects. So I will try to get on one of the newer drugs... looking to see what side affects I can handle and making sure I don't end up with side affects that make life harder than what it has to be... you know what I mean? I have never been told I have Epilepsy... just a seizure disorder. So do your homework... be careful what sources you read it from... and be careful about your life decisions. God Bless-
Votes: +0
LU
Luciferon
22 Sep 2021
Trigeminal neuralgia came out of nowhere and was excruciating (last bout was almost an hour) so Tegretol allowed me to sleep pain free. OMG so happy. So far, no side effects noted after 24 hours. Maybe some tiredness, but 6 days of pain will do that. I'm worried about osteoporosis, weight gain and dementia, but really, what choice is there compared to the pain? Id like to hear if anyone got the Jenetta procedure or nerve-deadening surgery. Or figured out what the hell causes this!
Votes: +0
DA
Dakota1996
15 Feb 2018
If all fails ... try a pain management clinic. .and get a nerve block treatment. .it's better than meds..I've had neurophathy for 6 years tried gabapentin. Carbamazepine and lyrica ..best results was s nerve block treatment
Votes: +0
WA
walteryoungmd5340
26 Nov 2016
Absolutely tegretal can help with neuropathic pain and in some cases miraculously, like trigemeninal nueralgia. And shingles. My eye has great results in central and sciatic pain at a dose of 1200mg daily. Not so good for non neurological pain and I am not sure if yours is neurological or bone joint pain of back. Docs often afraid to use high enough dosages as its off label use for it but is used a lot. Some say only low dose. We found higher dose much better. Yes list of side effects. Most people don't get the whole list. Go up slowly on dose. Watch kidney and liver tests to be sure they are ok. Read drug profile.
If problems you come off the drug, same if it's no help. Be sure you get adequate dose and two weeks as build up before giving up. You feel lousy with fatigue? How is it with pain. That really saps you. Fatigue may not be huge and may wain as you adjust. If you get better then see if you stay with it. Many other choices for nerve pain. Gabapentin, duloxetine. Some antidepressants give some relief. Many times you settle for less, not total pain relief. How about a nerve block at the spinal level. Can be helpful. Be certain your pain is diagnosed correctly. Can physical therapy help. Consider a spinal stimulator implant with consultation before back surgery. Read up on these. Docs are reluctant to deal with pain these days. So persist. Consult an anesthesiologist treating pain.
Walter
Votes: +1
SK
skochany
21 Sep 2016
I started on Tegretol 3 weeks ago for my MS pain. It has been a rough road. My fatigue is off the chart with difficulty staying awake. Also my headaches are more severe and I have had terrible nausea. On the bright side as I begin my forth week I am beginning to be less fatigued and the headaches are back to my normal MS headaches. The nausea is better, just slight, now. My neurologist said this drug would "put me through hell" for 4 to 6 weeks and to "just hang in there" if I could. I have had not experienced pain relief or increased pain since taking it. I know it is early to report, but I just wanted to say "hang in there" to anyone who is in the first stages of taking this drug. I am currently on 3 x 200mg per day. I also take Cymbalta and Nortriptyline for pain as well.
Overall I am on enough "pain meds" to knock out an elephant and still cry myself to sleep at night, but I am always hopeful and willing to try anything. To note, Lyrica and Gabapentin did nothing for me and were bad on the side effects side! Good luck to all!
Votes: +0
DA
Dannian
27 Aug 2013
Tegretol can be a tough medicine to start to take but if it works can be incredible pain relief. My best friend also has the same type of pain and hated the first month on tegretol it was an amazing difference
There are some other Meds she has tried over the years and I can ask her what worked best if you would like Take care of you D
Votes: +1
MA
MacIntosh12
29 Aug 2013
Hi Dannian, good to see you!! I'd love to hear any meds that your friend tried, thank you so much! I really haven't gotten up the ovaries to take tegretol yet, such a chicken am I, eventually I'll try it, though. I'll probably begin it this weekend. I'll report back IF it works for neuropathic pain like mine. I'm such a wuss about taking this stuff, just am amazed at the list of side effects. It's literally as long as my arm! That's one long list, sistahs!! Lara
DA
Dannian
30 Aug 2013
Lara I hope this day finds you feeling better. I do hope you try the tegretol and at least give it 2 weeks. The side effects are much less than most people experience with depakoate. Have you ever tried lamictal? It seems to be controlling the intense pain swings for me with other treatments with the pain management dr and looking into eastern Approaches and diet control. I will check with Casey this weekend and see what is working for her these days as she shares the same type of pain you experience Be well and take care Dani
TR
Triciakit
26 Aug 2013
HI Lara, I have been on tegretol for about 10 years . I find it good for my myotonia. the pain is greatly reduced with this med. I did go off it at one point just to see if I still needed it and the pain came back so I intend to keep using it as long as I need to. I haven't experienced any side affects that I can contribute to this pill. its also called carbamazepine. Im on 200mg 4x a day. Hope this helps . Pain is a lonely thing but this site helps to make it tolerable. At least it does for me. And Lara, thanks for your support In the past. Gail
Votes: +2
EM
Emeraldgirl
24 Aug 2013
Hello Mac12 (I will respond to your other response later)
Firstly thank you Lady2882 for saving me time looking up the generic name for Tegretol. Yes there are a lot of side effects, but all mediations have side effects. Carbamazepine (Tegretol) is a very very common drug for seizures in the UK. I have not taken the drug myself so I look forward to hearing how it is working for you . To get your energy back eat/blend raw vegetables and fruit. You will have so much energy your conditions will not be able to cope! Due to the way fibromyalgia (FM) and Chronic Myofascial pain (CMP) affects my ability to function I became a Raw foodest; as this was the only healthy way I could feed myself, hence the raw vegetables and fruit.
I also get stinging (I am stinging at this very moment, temperature as dropped), burning and weird electric shocks (usually associated with sitting) and stabbing pains sometimes hot stabbing pains and I do not have Spondylolisthesis. When I developed the stinging, burning sensations and electric shocks my Rheumatologist said it was due to FM (the sensitization of the central nervous system. other conditions can cause this to happen). The other symptoms that you mention I had when I was diagnosed with CMP. Be a guinea pig (I am helping your sense of humour!) and give Tegretol a go!
From your friend from across the pond etc, etc (lol)
Votes: +3
SA
sara12345
24 Aug 2013
I love that "from across the pond". We are closer than we think!
EM
Emeraldgirl
24 Aug 2013
what's a pond between friends!
Take care
MA
MacIntosh12
25 Aug 2013
Thank you Lady, Sara, and Emeraldgirl, (Emeraldgirl formerly known as CMP_FM!) I appreciate all three of you for responding to my question. I've yet to begin Tegretol, I'm such a chicken. These side effects are so frightening that I'm wondering if upping my Gabapentin dose (once again) to 1600mgs isn't a better option, my Neurologist brought that up. (The devil you know is better than the devil you don't know, something like that. At least I know what to expect from Gabapentin, ya get me?) If things go from bad to worse I'll (in desperation) give the Tegretol a try. I just can't deal with the mere IDEA of those side effects.
Sara, I also tried Baclofen with fantastic results, I loved that medication, it worked like a charm! But sadly, the ONE side effect that I had got so bad that I couldn't leave my house! I almost stayed on it, tho, just because it worked so perfectly, but if you can't leave the house, it's probably not the right med, right? I hope it's working for you splendidly for you, wait a tic, are you still on Baclofen? Or did you have to stop that one? I can't recall what you are taking any longer.
Lady, I'm very happy that your pain is better, along with your mood stabilization! That is a boon indeed. I'd no idea that this was used for mood swings. Good to know. I'm just thrilled that your back pain is better! Fantastic indeed.
And finally The Girl Formerly Known As CMP-FM, or our EmeraldGirl, finally you've gotten that name changed! It's a great name and of course I love it! I'll (eventually) get up the ovaries to try Tegretol and be our Guinea Pig. I'll report back to let all of you know how it is going. Lady's experience certainly is a good omen, to be sure! I do hope that one can get this rx across the pond, just in case it does work! You are so right, tis a pond indeed between friends!!
Love to you, all three, Lara
SA
sara12345
26 Aug 2013
Lara, You are being most cryptic about the Baclofen side effects. I would guess either diarrhea or agoraphobia. So too bad that you weren't able to take it. Hope that doesn't happen to me. Baclofen is the last option available to me, except for possible brain surgery which I'm waiting for my appointment on that the end of Sept. Again, so sorry.
MA
MacIntosh12
29 Aug 2013
NO!! Sara, brain surgery, really? Good Lord, I'm keeping you in my prayers dear lady. I'm just praying that Baclofen is THE miracle med for you!! It most certainly felt like it for me. The side effect I had was weird. It took me a while to figure it out, too. I began barfing with NO warning, no nausea before hand, just power-puking. (If I'm recalling it all properly, and I may not be.) Baclofen was the best med I'd ever tried, bar none. My SIL has MS and she used to take it at bedtime to stop the contortion-like spasms she had in her feet, so I was surprised when I was prescribed Baclofen, but it worked so well. I just know you'll feel great on Baclofen, Sara!! How long have you been taking it, if you don't mind putting it here, in public? Your friend, Lara XXXXXXX P.S. sending you a PQ straight away.
SA
sara12345
30 Aug 2013
Lara, So sorry that Baclofen made you vomit. I had strong nausea when I first started it, but then it totally abated after awhile. I also took it with food to help with the nausea at first. Now I will consider the brain surgery if the risks are low, to not have to take one of my many pills, plus I still have low level pain all the time. My neurologist also prescribed Lamictal to supplement the Baclofen, but I was too leery of it to try it. You need to start it very gradually to avoid the side effects which sounded too creepy. This is the second time that you have mentioned sending me something privately, but I have not received anything from you since 5/29/2013. Did I miss them? If you haven't in fact sent me anything, that's OKAY. Hope that you will find more relief. love, Sara
Lara, So very sorry to hear about your terrible pain. I tried Tegretol's close cousin, Trileptal, and got terrible migraines. So the doctor said no point in even trying the Tegretol for my Trigeminal Neuralgia. But what about BACLOFEN which did help my neuralgia a lot? And with my Trigeminal Neuralgia, it gives electric shock pain too. It gave me some nausea initially which gradually went away completely. I guess you can just try it, and then get off of it if you have problems. BUT check whether it is something that you can get right off. In the case of my Trileptal, again a close cousin to Tegretol, I had to wean off it to half the dose for a week before getting off of it completely, because otherwise you risk seizures, etc. from it. And I was only at half the dose the doctor wanted me to be at. Wish you the best. Love, Sara
Votes: +2
LA
lady2882
24 Aug 2013
Hi MacIntosh12 I started taking Tegretol (carbamazepine) a little over a week ago to stablize my moods. I have suffered from chronic pain for a number of years but didn't know it could help with that until day 3 on it and I was wondering what was different as my back and wrist both have been better than they have been for years. Start up side effects have been pretty awful; nausea, stomach ache, diarhea, headaches, and so tired; but I'm hoping I can stick it out and the side effects start to go away soon as I haven't had this much pain relief in years and it is helping with the mood swings. The other potential side effects are kind of scary but I will just watch for any signs and pray I don't get them. Take care
Votes: +2
LA
lady2882
30 Aug 2013
Just an update. I ended up with the Tegretol Rash which turned into red spots of various sizes on my legs. I have had to stop taking it as this is a very serious health issue (bone marrow depression). This happens in the first 4 weeks of taking it and should be reported to your doctor right away. Blood tests need to be done. So far I am lucky and the blood counts are okay. Day 2 off the tegretol and the pain is coming back so I guess it was really helping with the pain. Mood swings are returning as well as I was taking it for mixed episode bipolar. Nothing like being angry, laughing and crying all at the same time because the bacon won't come apart.
