I have been on Amitriptyline for over a year that has controlled my left side Atypical Trigeminal Neuralgia symptoms very well. I have recently been experiencing symptoms on the right side, which I posted a discussion about on here.
I went to Emergency last night for some kind of relief and the doctor was actually very helpful and sympathetic. I obviously need to try a different medication for the right side. He has suggested that I taper down the Amitriptyline and begin taking Tegretol.
I know that there are many medications to try and that everyone is different, in that what works for one person does not work for the next. I do not want to jump in quickly, though. I want to research before I try another medication. Especially, if it means coming off the Amitriptyline. That scares me because I will be dealing with the left side pain as well.
The pain on the right is predominantly on my tongue and the roof of my mouth. Just wondering what medication others' have had success with.
I am on Tegretol 15ml 4 times a day coupled with one nightly dose of Cymbalta (generic form) 60mg. This controls my Glossopharyngeal Neuralgia pain a good deal of the time but not always... I have heard that Trigeminal Pain is better controlled then GPN pain however I don't know this first hand. Now, I am not a doctor, but it sounds like you may possibly have both conditions. My neurologist swears by Tegretol for pain relief but as the brand name it is extremely expensive. There is a generic brand and for (I would say) most people, it works well. I, unfortunately, need the brand name for the best relief. I have quite a bit of break through pain with the generic Tegretol..
I wish you much luck and less pain on your journey!
Sadly with neuralgia medications after a period of time tend to become ineffective and one experiences break through pain (all types whether it is TN or GPN). Most people end up on the medication merry-go-round.
Some people are lucky and may use a medication for quite a number of years successfully, but others it can be a shorter period of time. Generally one starts on a particular dose and finds over time they need to increase and then need to change to another medication or add an extra one on.
Tegretol is the preferred first line choice for GPN as it is the most effective for this type of neuralgia. Another which is often prescribed is Neurontin (gabapentin). I suffer from both TN and GPN but cannot take the meds because I have had quite severe reactions to them.
If you suffer from any skin conditions please discuss this with your GP or dermatologist first before taking Tegretol as it is known to cause skin issues in some people, so if you have one to begin with you want to ask whether it may worsen or whether it is ok to take with it.
You could ask your doctor or maybe chemist if they could print out the full prescribing information from MIMS which actually states everything in full and often refers to research trials and data. It is a lot more informative than patient leaflets. But it all depends on how much information you want.
justjane37 I have sent you a friend request...I am from London Ontario and would like to discuss with you where & who you have been treated by. It seems that in my city the neurologists/neurosurgeons have not had much experience dealing with GPN and I am currently experiencing symptoms & extreme pain possibly due to the GPN reaching a "breakthrough point" with the meds.
To summarize my case, I was diagnosed September 2014 & prescribed Carbamazepine (gradually increased dosage up to 200mg x 6 per day) & also Baclofen to control the muscle spasms that the Carbamazepine was causing. I had an MRI in London & a 3T MRI at Toronto Western where I saw Dr. M. Hodaie. Both MRI results were negative, they could not find evidence of the cause of the GPN, and advised against exploratory surgery in conjunction with MVD surgery at this time.
By December 2014 meds seemed to mitigate the pain completely. My London neurologist told me I could now gradually reduce the dosages (due to being groggy, not as "quick" intellectually as before, etc.) so I gradually got down to 200mg per day of Carbamazepine & 20 mg a day of Baclofen, a huge reduction. But it seemed to work well for quite a while.
Until early this December when I started to get some slight discomfort returning in the left throat area when I chewed food. It slowly increased in scale on the pain-meter and on Dec. 23rd I began to use my Xylocaine (Lidicaine) spray at times in order to talk, swallow food, etc. Then Dec. 26th I had severe pain in my left jaw during the night. Same thing last night during the night. I was doubled over & tears rolled down my cheeks all night. Hardly slept. This 10/10 pain was slightly different than the 10/10 pain I suffered in Sept. & Oct. of 2014 when initially diagnosed with GPN. Instead of a sharp stabbing throat/jaw/tongue pain that I had in 2014, this new recurrence was more like being hit in the left jaw with a sledge-hammer while being tasered. And during these episodes the Xylocaine didn't touch the pain at all.
I am wondering if this is the same pain brought on by the GPN finally breaking through the meds? Or is it something new? Will this be remedied by increasing my meds as fast as can safely be done? Trouble is, all my Neurology Dr. contacts are on holidays until Jan. 4th. I went to the local emergency room today...was told nothing they could do except prescribe Morphine, which never worked back in Sept. 14 so it will not likely work now, to mitigate the pain. I am guessing the only remedial action for me is to slowly gradually increase the meds I am currently on and see if that can get it back under control again. Argggh!
Nice to meet a fellow Ontarian! I'm sorry that your pain has returned. I have had a similar experience. Winters seem to be way worse for me. This past summer I also had a remission and was able to go off of my medication...but it was short lived.
One thing I have found with my TN and GPN is that it is constantly changing and morphing. Last winter was hell on earth around my left eye but this time it is the back left of my mouth extending down my throat. It is insanely uncomfortable and scary. It isn't stabbing pain either but burning and aching with these bursts of pain and almost spasm feelings across the back of my mouth. It started with an actual cold and has left my sinuses, mouth and throat a mess. TN is hard to control and I have only truly been pain free when I am in remission.
I am now on Nortriptyline and going back on it has helped but I am still getting flare ups. I would think that increasing your current med first would be the next step. If it worked before then hopefully it will again...or at least enough to make your symptoms tolerable.
I'm afraid that I can't be of much help with DRs. I also saw a DR at Toronto Western. Dr. Hodai's associate Dr. Tymianski. He told me the same thing as far as surgery is concerned and offered no help. They referred me to Dr. Watson who is a neurologist in Etobicoke. He is very good with facial pain but is semi-retired now so I am not sure if he is accepting new patients. You could look him up though and ask for a referral. I haven't seen him in awhile because the only help he really offered me was medication and I don't want more of that right now and my GP will increase/decrease dosages when needed.
There is a facial pain clinic at Mount Sinai Hospital in Toronto too. I only have one friend that went there and nothing was offered for her but it may be worth a try. Other then that I don't know of any other specialists in the area. I am really at a stand still right now with my medical care as well. I am looking for a new neurologist...possibly Dr. Crisp in Oshawa. Othere then that I have considered looking at pain management clinics. The best neurosurgeon that we have in Canada is Dr. Kauffman in Winnipeg. I have heard that he will consult from a distance and ask you to come in if he thinks he can help.
I truly hope that you find some relief. The ER has never helped me either. Pain meds don't work although sometimes getting some extra sleep will calm things down a bit. That is what is so disheartening about this pain....knowing that there is nothing that can give immediate relief. Always here if you want to chat
The more I have read over the past 8 hours, and compare that info to my current symptoms, the more I believe that I may now be experiencing pain from undiagnosed Trigeminal Neuralgia.
Which leads me to a question to anyone: Is it possible to first have GPN for a period of time, then subsequently (over 2 years later in my case) also have Trigeminal Neuralgia?? If so, can the same medication being used to treat the GPN also be considered to treat the TN? Or would it require a totally different type of medication? My Neurology contacts are all off until January 4th therefore I am asking here. Thank you in advance for any help!!
The same with me. I have had Tn on and off for ten years. But the last year or so I have symptoms of gpn as well. I have symptoms from both nerves at the same time. To have just one of these neuralgias is extremely rare let alone multiples! But yeah I have come across many other sufferers that have pain from multiple nerves. I also have symptoms of ON. It is possible to have multiple compressions and I know of a couple of people that have under gone mvd where this is the case. Makes things more complicated all around. The same medications are used for all neuralgias/neuropathies but I think relief may differ across the board. It is all trial and error. Carb is a first line med for Tn or gpn. I have found relief with tricyclic. Some people take both to get relief. Unfortunately there are no easy answers
Thanks again for your reply. I feel for you. Wow....you have surely endured a lot of pain & frustration, I can only imagine how much since I only began to have symptoms/pain of GPN in Aug/13. The frustration of having so much pain is only compounded by the fact that there is no rigid memorandum of treatment for sufferers. It is only through trial & error of trying various meds it seems. Well, I have certainly appreciated hearing from you. I hope you can enjoy the holiday season :)
The lack of proper treatment is sometimes worse then the infliction itself. I'm sorry that you have this. I hope you find relief and go into remission again. I had a complete seven year remission after the first year with TN. Here is a diagram that shows what nerve serves which part of the mouth--maybe it will help you.
I get bi lateral TN / ATN and use amitryptline ongoing, and use Gapapentin to settle down any pain that spikes occasionally or if I have a full blown episode. I find using the two together works quite well and d I usually don't need to use the Gabapentin for protracted periods and only low doses (seems I've very sensitive to drugs) if I get on top of the pain quickly. Hope this helps. :)
