I have had TN for 9 weeks now. My meds have been upped ever 5 -7 days since I was diagnosed. I am currently on gabapentin 2700 mg and carbamazepine 400 mg a day. Every time the meds are increased the pain is dulled for two days and then the pain comes back worse than ever. Has anyone had this experience? Any solutions? And my meds are spaced out during the day. And I woke up with hives this morning, but the hives have settled down....I am continuing with all my meds and just watching for the hives very carefully.
Check with your doctor. It may be possible to take some kind of medication to help if the hives start up. Benadryl is one option you might want to ask the doc about.
Karen36710,
You are in the early stages of TM, so you will still have to experiment on either a dose of a single drug, or a cocktail of drugs that will work for you. Tegretol works on blood level, so you have to get to the right blood level that works for you and then maintain it, that's why you have to take it regularly. It varies for everyone. For myself, for instance, Gabapentin was added when the Tegretol was no longer enough to dull the pain.
Work with your neurologist to find the right dose or cocktail that works for you. It may take a while, but there can be relief. Just hang in there!
Thank you. I was initially started on carbamazepine but when it was increased I could not tolerate the side effects, so the doctor changed me to gabapentin. We recently added the carbamazepine to the gabapentin and I am not sure which drug is giving me the hives...allergic reaction. I don't know where we go from here...any ideas
thanks
karen
Be careful i would have that look at with the hives never know or it could be something you ate gabapentin is pretty good i would try just gabapentin
I was on just gabapentin 2700 mg and had break through pain. The doctor added carbamazepine 400 mg. I am having a horrible night, pain in my cheek, painful to swallow or to talk, even half my tongue is painful. The hives are there but not too itchy...I can not think of any other reason I would have the hives except the drugs. I am not sure what to do.
Oxcarbazepine makes my muscles hurt on a low does i cant stand it thats my main side effect its worst on tegretol
Hi Karen. It can take some time to find the medication that works for you. For me I take Lyrica and Trileptal. Take with warm water so as not to set of the pain. I take equally throughout 24hr period. That means setting alarm to take during the night. Take with warm water NOT cold. I have also begun taking Vit B12 METHYL 500mcg daily. It is supposed to aid in repair of myelin sheath. Join th TN Assn in your country and get hold of the book Striking Back. All the best
I need help guys...what is the treatment for TN when you can not swallow? This is my second day of pain in my cheek, jaw, tongue....so difficult to talk or swallow. I barely got my morning meds in to me.
Karen, are you under a neurologist? If not, you need to be. In the meantime, I suggest going to a hospital emergency for some help. If you can't speak, have it all written down, including your allerg, symptoms, meds you are on, etc. Good luck.
Hi, Karen
I too have had hives on and off since starting Carbamazepine in April, BUT I have had them before accompanied by angiodema of my feet, hands, torso and sometimes my face, and again BUT that was long before starting any medication for any reason! I also had a variety of other rashes at the same time too. My GP referred me to a Dermatologist who suspects they are autoimmune related.
Make sure you tell your doctor and get appropriate treatment such as Loratadine. Carbamazepine is notorious for inducing this reaction. If the hives recur and they are intensely itchy or burning they may well be unrelated to the Carbamazepine, hence the advice to tell your GP.
Best wishes.
Hello Karen, Oh crap, another victim for the "monster". Humor sometimes work as a mindfulness tool to cope with this. Anyway, PLEASE stay with medications, whatever works for you. I would advise against any procedures, whether evasive or non-evasive. Such as radiation or micro-vascular decompression, and others. I have had both done, and they failed. Does not say that they are always unsuccessful, but the side EFFECTS are HORRIBLE, and the side effects come along with the procedure anyway, even if it works. I do not mean to be the devil's advocate, but it is a war against this "monster". All the information can be found for procedures and medication on the Mayo Clinic, John Hopkins, and the American Medical Association of Facial Pain web sites. Many others also.
I am taking Lamotrigine ER 250 mg/day. It seems to take the edge off from the "zingers"(electrical shocks that are produced from triggers).
Hang tough!!!
God Bless,
Greg
I am now on prednisone for 7 days then back to the doctor. Also now have a referral to a neurosurgeon in a nearby medical centre. I am pretty sure i am looking at a destructive procedure. I am in so much pain right now that I will try anything. I can not eat, I can barely sip water
karen
Hi karen36710
Getting in to see a neurosurgeon is a good thing. He or she will be able to explain various surgical options for you. As in anything, you MUST do your research before you commit to anything, but keep an open mind. You never know if it's the right thing for you. Microvascular Decompression or MVD has a success rate of 90%. If you're young and fit, it might be a good option for you. Yes, the recovery from this procedure isn't fun, but once you get past the 3-4 weeks of discomfort, your life may change. I had it done 3 weeks ago and I must admit the first 2 weeks were so difficult I had started to question the wisdom of doing it, but I am happy to say I am now 95% back to normal, with a significant reduction in pain.
However, all these things--drugs, surgery, doses, etc --- all we can do is share our own experience with you. Ultimately, you and your neurologist will have to find the right path for you. This is a classic case of what works for one may not work for the other.
I know how difficult it is, but find yourself a neurologist you can trust then together find your way out of this.
Good luck! I pray that you and all of us who suffer from this will find a way to get our lives back.
Hello
It is finding the right pain relief that works for you and it maybe a cocktail of different ones.
Our Daughter was diagnosed a few weeks ago and she is on carbamazepine with Tramadol and naproxen to top it up. However she has started going to Reiki sessions and this has helped her we are not saying that it will always help but it has helped with her stress levels and this has helped her to deal with the pain better.
She is only 20 years old so this is very young for this awful condition, keep up with your own research and get to see a Neurologist as soon as you can, we have an emergency referral but it is not till the end of September although we phone almost daily to see if they have a cancellation but to no avail.
Don't give up and try whatever makes you feel comfortable in trying.
All the best Paul
Me again. I am not doing well...my husband had to take me to the doctors again.....can not swallow or chew, plus I have cold sores in my mouth ....apparently this is from the TN....and I have hives. Still on 400 mg of carbamazepine and 2700 of gabapentin a day plus prednisone for 7 days. I am a mess. I am waiting to see a neurosurgeon, on the urgent list but no idea how long that will take. I Am now willing to consider the glycerol injections..
Hello rsw,
Please define young and fit. I had MVD 15 months ago and it was a complete failure. I have complete Oral and Facial numbness on side of surgery, and on top of that, "anethesia dolorosa". Pain on top of numbness from surgery. If you have any side effects, please let me know. I was 58 and in great shape.
God Bless,
Greg
Hi Paul,
Does she have atypical TN or the normal one? Does medicine take away her pain? If she has the normal TN, then probably MVD would be a good solution for her.
I am 26 and have atypical TN. Had a MVD which didn't work. Now taking a lot of different drugs, but still have very painful days. I have it since September 2015. Thought it is a tooth pain so first 4 months had a lot of work done on my teeth.
Having suffered for 19 years & 3 surgeries I have found tegretol / carbamazepine in doses of 600 to 800 mg daily works much better than the gabapentin. I use
100 mg of gabapentin daily. You seem backwards from me, heavy on gabapentin & light on tegretol. I also prefer extended release tegretol to quick release chewables.
I was having really bad pain every 5 to 10 days until I sent all my info and symtems to a program called Prime in Lincoln Nebraska. The program Prime is a bunch of specialist who look at all your symptoms and decide what program works best for you.. I saw an orthodontist, vision, and physical therapist. I now have a lower splint that i wear while I am sleeping and periodically thoughout the day, they also gave me some exerices to do. I have not had any pain since I started wearing the splint and I can sleep on my left side again.!!!! I still take the carbamazepine twice a day but they hope that soon I will be off of that also.