Has anyone had problems with severe pain in their muscles and joints due to taking carbamazepin or gabapentin? I take both and not only do I have regular break through pain on the right side of my face but I am having agonizing pain in my joints and muscles that I never had before and I'm thinking it's because of the medicine. I have had TN1 and TN2 for about 7 months and the dosage keep increasing because of break through pain. Any ideas would be appriciated.
I really struggled with both those meds, couldnt tolerate carbamazapine and only took it for about 3/4 weeks, itching all over, sick, tired, dizzy, affected my eye sight. Gabapentin didnt seem to do very much for me at all, took that for about 4 months and was constantly titrating my dose up, ended up maxed out on it with flashes of pain almost as regular as when i wasnt taking it. I also found that all the meds did nothing for my general well being, was in a dark enough place struggling with the pain and the subsequent depression and the meds did nothing to help with my mood. I had more luch with oxcarzepine but that still didnt control the pain completely, did 6/7 months on that and ended up maxing out on that as well. I havent had much luck with any of them so far, none have completely controlled the pain. Has lessended up enough now that its tolerable without any meds at all and I feel better for not taking them in general. Apart from the odd day here and there where I want them just because they pretty much knocked me out, could have been run over by a steam roller and I probably wouldnt have noticed at the time.
Are you a candidate for any form of surgical intervention? Im currently waiting to see another neurologist in the hope that he will offer some sort of end or succesful treatment for it. Dont think they do head transplants at the moment but id be willing to volounteer if they wanted to try it.
Good luck, i hope you get some respite.
I have sporatic incredibly deep ache in my bones and some joints. A neuro suspected fibro and I assumed he might be correct. A couple of years ago I struggled with my muscles feeling painfully tight, esp in my forearms. It felt like I was gripping something like a steering wheel but with a death grip. Over time, that seems to have passed. The bone pain has been for a while now and is primarily in my lower leg bone, like deep in the bone.Your post is the first I have read to connect the two. I have been on Gabapentin for 4 years but had to steadily increase my dose.
borris said:
I really struggled with both those meds, couldnt tolerate carbamazapine and only took it for about 3/4 weeks, itching all over, sick, tired, dizzy, affected my eye sight. Gabapentin didnt seem to do very much for me at all, took that for about 4 months and was constantly titrating my dose up, ended up maxed out on it with flashes of pain almost as regular as when i wasnt taking it. I also found that all the meds did nothing for my general well being, was in a dark enough place struggling with the pain and the subsequent depression and the meds did nothing to help with my mood. I had more luch with oxcarzepine but that still didnt control the pain completely, did 6/7 months on that and ended up maxing out on that as well. I havent had much luck with any of them so far, none have completely controlled the pain. Has lessended up enough now that its tolerable without any meds at all and I feel better for not taking them in general. Apart from the odd day here and there where I want them just because they pretty much knocked me out, could have been run over by a steam roller and I probably wouldnt have noticed at the time.
Are you a candidate for any form of surgical intervention? Im currently waiting to see another neurologist in the hope that he will offer some sort of end or succesful treatment for it. Dont think they do head transplants at the moment but id be willing to volounteer if they wanted to try it.
Good luck, i hope you get some respite.
Thank you Shadow2 for your response. I am having a hard time replying for some reason. I am sorry to hear about your struggles and pain in your bones and tightness in your muscles. I think there may be a connection to the meds and other pain we are having. I will have to keep searching until I find an answer. If I find one I will be sure to post it. Best of luck to you!
Hi Borris, Sorry to hear about your difficulty with the meds. It's great that you have been able to go off all your meds. Even with all the side effects, I would be afraid to go off the meds without something to replace them. My doctor has recomended surgery but I'm not ready yet. I still have hope that there is another answer or a different medicine that might work. I hope you have some respite also. :)
I was not able to deal with the side effects of Carbamazepine and from every thing I had read, it sounded like the other meds would be more of the same. I drank a lot of Rooibois tea and spent a lot of time in my darken room. Then I started hearing about the benefits from marijuana. After some experimenting, I have my dosage down and I have been pain free since about the middle of Feb. I had just been diagnosed since last March, so I have only been doing this for about 1 1/2 years, but with my “herbal meds”, I am almost pain free. I make miniature brownie cupcakes, and I only need 1/2 of that. I eat it before I go to bed so it also helps me sleep and I sleep thru the effects of the marijuana. I live in Washington State so it is legal. I was able to get an appointment at the U of W Medical clinic, but I found my herbal cure before the appt. The Dr. totally approved of what I was doing…said he had others using also.
Side effects are common with most or all our meds, and these are mentioned at least in the carba leaflet. This is something from your doctor to check on. Do not be embarrassed by going often! You are not a hypochondriac, and TN, and not to mention our medications, are serious biz. They will get over themselves if hey are skeptical in the beginning, once they start seeing you on changing meds and dosages over time.
Also, it is important to make sure side effects are reported - even if they are already on the list. Do it fr the rest of us. But something is common, but not reported, they keep putting people on the meds in spite of alternative drugs. You can get your GP to do it, or do it online yourself. Google "report side effects"
I have been on Carbamazepine for 5 months now and as of three weeks ago developed the stiff muscles and joints. Feels like I overexercised and never gets better. Also have the tingling in all of my extremeties, low grade headache, and down in the dumps feeling. I will be switching to Trileptal tomorrow, my doctor said it's less toxic; however when I read the handout from the drug store it shows all the same side effects as Carbamazepine. I'll just have to wait and see. Good luck with whatever you choose to do. Some people can take these drugs and not have any issues; but I think you need routine bloodwork done, because there are problems they can cause you don't even realize you have.
Thanks for the info to report side effects. Until I read them here I just assume it is something else wrong with me. The only side effects I attributed to my meds were weight gain *aarggh* and drowsiness. Like an idiot, I don't even complain to my dr. because I don't want to be seen as a hypochondriac. SO much I have not told my doctors. I have found female docs for the most part to be more receptive as some of my male docs make snide comments or seem annoyed.
We were talking about the hypochondriac-doctor thing in another thread too. Th thing is: it is easy to get to absorbed in the pain and overthink stuff. Once you see your doc regularly, they will stop seeing you as oversensitive. They know it is serious they just don't know about all the side issues. Tell them - they will both get to know you and may learn somethng about TN (yes, GPs know very little about from onesided severe pain. That should really be enough to understand you are not hypo...). Trust me, you will see the person often when you are changing dosages/meds etc, they will get over themselves. It is important with side effects, please do go.
Yes, I am on carba and my blood salt level go down, so I make sure to have blood checks regularly
Hi Kat - So sorry to hear about your troubling side effects on your meds. I would strongly advise you to educate yourself about MVD surgery since you are early in your diagnosis and also before you get to a point where you might be desparate. I did not have the muscle ache/pain side effects but had side effects that I wasn't willing to live with and mainly because I couldn't stand the breakthrough pain anymore that forced me to increase my doses, bringing on more and more side effects.
I had TN 1 pain for 9 long months before I had a successful MVD 18 months ago. I am 100% pain free and med free now and would do it again and again in a heartbeat to escape the pain of TN. I was initially put on Trileptal and it instantly made me very nauseous. By the time that settled in about a week, the pain was breaking through too much and I had to up the dose. That cycle continued with Trileptal (1 week of new side effects from the upped dose, 1 good week managing my pain, 1 week with bad breakthroughs and then time to up the dose.) By the time I maxed out on Trileptal, I was taking so much meds that I had "episodes" that felt like I was taking illicit drugs, including some hallucinations. I was then switched to Carbamazepine XR (Tegretol XR), which in a way was better because I didn't get the "drug dumps" in my system since it was extended relief. I had to take that spread out 6 times a day and went through the same pattern as Trileptal every three weeks. Both meds made me "dumb down", super forgetful (I couldn't remember how to drive to a friend's house one day that I went to all the time a mile away!), feeling down, foggy head, etc. Plus I have Hypothyroidism that is controlled with a low dose of Synthroid but the Tegretol interfered with my bodies absorption of Synthroid so I went straight in to uncontrolled hypothyroidism almost the entire time I was on that med. I decided about half way through my 9 months that I must have the surgery. I couldn't and wouldn't live that way. It was one of the very best decisions I ever made. I traveled to Dr. Ken Casey in Michigan to do my surgery. He co-wrote the "Striking Back" book, which I hope you have read already. Find a neurosurgeon who specialized in TN and go for a consult. Learn more about it. I went to 3 neurosurgeon consults before I decided to do the surgery and who I wanted to do it.
Thank you Ann, Tineline, Bosltov, Mybell, Shadow2, and Borris. I appreciate all your comments and information that you shared. I feel less alone knowing others have struggled with similar problems with the medicines.I see my doctor soon and plan to ask for a change in my meds and not just upping the dosage. I will suggest Trileptal and would like to try medical marijuana but I don't think that where I live in Wyoming has passed the bill yet. I wish you all the very best and thank you, you have helped more than you realize.
Hi yes I have very similar experience tho with different med. I was diagnosed with tac (migraine) but with overlapping tn2 issues last May. Did gabapentin for one month but could not tolerate. Topamax to the rescue. After initial misery of titration to 200mgs I was pretty certain my life had been saved. No more chronic migraine and/or geniculate neuralgia (my neuralgia actually ended up moving around and became oddly bilateral). Seriously never felt better in my adult life. (43) anyway one month into 200mgs I started having incredible pains on right flank. Christmas time of course! Well aware of kidney stone warnings I've drank 3 litres water daily religiously since starting topamax.. long story short had gallbladder pancreatitis requiring emergency gallbladder removal. Ok but pain did not go away and only got more severe on both sides of ribcage, chest wall and back. Docs ruled out everything ( costochondritis, stones lodged in ampulla of vater ) CT/mri all clear but pain rendered me immobile. Extreme muscle cramping across ribs plus burning neuropathic pain. I wasn't sure if my heart was going to fail or my kidney was going to be ripped out first but needless to say I was headpain free!! What a miserable thing headpain is. Topamax works so beautifully (ok I had a organ removed & haven't had income for 3 months because Im in very bad pain) and I'm so terrified of the combined migraine/neuralgia battle that I actually contemplate now that I'm down to 75mgs of just dealing with the chest pain and 're-emerging head jabs and staying on it. I just took lamictal for only three days and broke out in rash. I know you all understand the feeling of futility that goes with the med cycling. I'm done but do want to say that yes, undoubtedly your meds can cause muscle cramping. And also topamax really did help with my particular type of neuralgia tho not sure if mine is purely migraine related as I have it regardless of migraine. If you can tolerate the side effects of topamax to get to dose maintenance then possibly it's another avenue to check out. At least ask your doc and read about it in Striking Back (book).
Hi Tineline, when you say your blood salt level goes down, what do you mean exactly? I'm asking because I noticed low sodium on my blood tests and I am having terrible trouble with salt cravings - and I don't like salt in food! Is this related???
Tineline said:
We were talking about the hypochondriac-doctor thing in another thread too. Th thing is: it is easy to get to absorbed in the pain and overthink stuff. Once you see your doc regularly, they will stop seeing you as oversensitive. They know it is serious they just don't know about all the side issues. Tell them - they will both get to know you and may learn somethng about TN (yes, GPs know very little about from onesided severe pain. That should really be enough to understand you are not hypo...). Trust me, you will see the person often when you are changing dosages/meds etc, they will get over themselves. It is important with side effects, please do go.
Yes, I am on carba and my blood salt level go down, so I make sure to have blood checks regularly
Woman with the electric teeth. If you do a search on here for that term, you should find a few postings about it. I don't remember details, but iirc, it is a pretty serious side effect of our meds and some members have ended up in the hospital from it. Honestly, our doctors really don't test us enough for the long term use of these meds. My neuro has never ordered blood work and I have to ask my primary dr. every year for a CBC.
Thanks for that tip, Shadow. It never occurred to me it might be 'a thing'! I had low sodium marked in July last year and it's never been tested since - eek! It's only in the last few weeks the salt cravings have started. They've got slightly better since I started salting all my food like a mad thing, but I'm still adding it to everything. I've also got a steadily falling neutrophil count, so much so I've developed neutropenia, so I'm guessing this isn't good! I'll ask the doc to check sodium at the same time as he does a full blood count - also well overdue. Thanks.
shadow2 said:
Woman with the electric teeth. If you do a search on here for that term, you should find a few postings about it. I don't remember details, but iirc, it is a pretty serious side effect of our meds and some members have ended up in the hospital from it. Honestly, our doctors really don't test us enough for the long term use of these meds. My neuro has never ordered blood work and I have to ask my primary dr. every year for a CBC.
I have been taking Carbamazepine for 3 years now. In the past few months I have developed very painful joints in my hands and elbows. I had never consider it to be a side effects of the drug before reading this stream. I will get this checked asap to be sure it simply a side effect and not a different issue. I also have sodium issues and have beeen hospitalized twice for that. I am so sensitive to the meds used to treat TN and have very limited options. All the best to you as you find comfort.
I have a standing order for sodium and potassium lab work from my doctor and I go every week or two. I use my symptoms as a guide for when to go. I have already been hospitalized twice for this. As a result I am fluid restrictions of 1000 mls in a 24 hr period. This includes coffee, tea and soups as well as any other liquids. It works really well to control the sodium and allows me to stay on the Carbamazepine.
Woman with the electric teeth said:
Thanks for that tip, Shadow. It never occurred to me it might be ‘a thing’! I had low sodium marked in July last year and it’s never been tested since - eek! It’s only in the last few weeks the salt cravings have started. They’ve got slightly better since I started salting all my food like a mad thing, but I’m still adding it to everything. I’ve also got a steadily falling neutrophil count, so much so I’ve developed neutropenia, so I’m guessing this isn’t good! I’ll ask the doc to check sodium at the same time as he does a full blood count - also well overdue. Thanks.
shadow2 said:Woman with the electric teeth. If you do a search on here for that term, you should find a few postings about it. I don’t remember details, but iirc, it is a pretty serious side effect of our meds and some members have ended up in the hospital from it. Honestly, our doctors really don’t test us enough for the long term use of these meds. My neuro has never ordered blood work and I have to ask my primary dr. every year for a CBC.
Hi Patty. I'm not sure I could stand to restrict my fluids. I seem to be permanently thirsty and I suffer from dry mouth. It gets really desiccated if I don't drink a lot. Maybe this isn't helping salt issues? I don't know enough about this! Did you know that Carbamazepine can actually cause a form of systemic lupus? In other words it creates a sort of mass autoimmune reaction in your body. I suspect this may be happening to me, slowly but surely. I am in a period of remission at the moment; I sincerely hope I can wean off Carbamazepine.
Patty said:
I have a standing order for sodium and potassium lab work from my doctor and I go every week or two. I use my symptoms as a guide for when to go. I have already been hospitalized twice for this. As a result I am fluid restrictions of 1000 mls in a 24 hr period. This includes coffee, tea and soups as well as any other liquids. It works really well to control the sodium and allows me to stay on the Carbamazepine.
Woman with the electric teeth said:Thanks for that tip, Shadow. It never occurred to me it might be 'a thing'! I had low sodium marked in July last year and it's never been tested since - eek! It's only in the last few weeks the salt cravings have started. They've got slightly better since I started salting all my food like a mad thing, but I'm still adding it to everything. I've also got a steadily falling neutrophil count, so much so I've developed neutropenia, so I'm guessing this isn't good! I'll ask the doc to check sodium at the same time as he does a full blood count - also well overdue. Thanks.
shadow2 said:Woman with the electric teeth. If you do a search on here for that term, you should find a few postings about it. I don't remember details, but iirc, it is a pretty serious side effect of our meds and some members have ended up in the hospital from it. Honestly, our doctors really don't test us enough for the long term use of these meds. My neuro has never ordered blood work and I have to ask my primary dr. every year for a CBC.