My name is Hailey. I am new to this page. I am on 2700 mg of gabapentin, 50 mg of amitriptyline and 30 mg of baclofen. Nothing helps. My pain is unbearable and none of the medication is working. Anyone else tried something different that helps with pain and doesn’t make you so exhausted? Some days I don’t even know if I can handle the pain. I’m trying to convince my neurologist to switch my meds but she’s being very difficult. Any replies would be very appreciated. Thanks so much.
Bailey, so sorry your pain is so bad, many nights I have went to bed not wanting to wake in the morning.Things will get better! My question to that would of been when?This pain is so terrible we will do almost anything to make it stop.At least that is me but I know I am not the only one that feels that way. This web site is great! Everyone is so helpful, compassionate, everyone here does understand.We may have different triggers, some meds. work for some and not others, this tn is so tricky.If I can find something positive to do or think about helps me.At times no very often the pain out does the postive then I just have a pittty party for myself, then I try again. I went to my gp. today and wasn't overly happy about the results.Trying to make drs. understand how much pain we are in isn't always easier.I am also on amtriptyline but it only helped the burning boring throbbing pain. After just 3 or 4 months and after increaseing a month ago from 150 mgs. to 300 mgs. a day did not help at all.So I asked her to wean me off of that and try trileptal.Even that is scarey to me. I worry if this new drug will even help.What will be the side affects, can I handle them I sure hope so. Our ER. knows me on a 1st name basis, which I don't like either but hey when this pain is so bad I want to die then it is way past time to go to the ER.I know they are still able to get it stopped for at least for a few hours.KEEP on your Dr. to switch your meds. I sure hope we all find pain relief. and I know the day will come when a cure is found for this monster we all here know someday there will be a cure.Until that day we find little and big things to help us deal with this. I hope and pray you will find some relief soon and you couldn't of found a better site to be on.There is just so much info. here to help us and that I am so thankful for. Soft hugs being sent your way.Please hang in there. We all have good and bad days and everyone is here to help each other to get past the bad days and look for the good ones.I am sure you will here from others soon. Dawn
I am sorry that B was suspose to be a H whoops!
I am in the same boat. 1st time on site. I guess I have Atypical. I have seen 4 doctors, 1 dentist, 1 TMJ specialist, 2 neurologists, & 1 neuro surgeon since June! NO one will really help me. When it 1st started I had attacks every nite for 2 months. I could have gone to the emergency rm every day too!
I have tried many drugs also. I live on Vicodin during the day & Gabapentin 1000 mg & noryriptyline at nite. Now I am going to try another anti seizure drug, starts with a “T”. I am not a candidate for surgery because my pain moves to both sides of my face.
I’m depressed, angry & feel hopeless too sometimes. And I am resigned to the fact that this is for life!
Is there any support groups in Michigan?
Miss Hailey,
Gabapentin did not do anything for my TN pain. I had much better response to tegretol. Eventually after 6 years the pain was not relieved by medication. My family physician ordered a mri/mra which definitely showed compression of the TN by the superior cerebellar artery. I did a lot of research and found a surgeon at Cedar Sinai Hospital in LA that uses a minimally invasive endoscope to perform the surgery rather than the traditional large scope that most neuro-surgeons are using. He has done between 250-300 of these and has a very good success rate. I had tried a lot of different recommendations from different sources and felt like this was my only chance at a lasting result. I had the surgery done on July 12th and have been pain free since. I do read of many failures or only partial success from surgery and I really feel blessed to have had such a good outcome. I feel like I have been given my life back, and I hope that I can give TN sufferers some hope that there can be good outcomes if it comes down to a surgical approach as the answer. How long have you been symptomatic from this and what are your symptoms. If I can help with any questions just ask. There are many of us that are or have been where your at and we can come along side you for support.
Blessing and Prayers!
Jay in North Idaho
Thank you everyone who replied. Today has been a bad day. I just get so angry sometimes and I lash out at people and I don't mean to but they don't understand how I feel. I am so fed up with my neurologist I want to scream. I am trying to get them to switch my medicine but they are not helping me at all. Being on 2700 mg of gabapentin cannot be healthy! I am so tired most of the day I don't feel like doing anything. Jay, This started a little over a year ago. The pain is in my lower right jaw/face. It feels like a knife is stabbing me in my face all the time. Especially when I talk, eat and brush my teeth. I am with Ann. I am starting to wonder if my life is going to be like this forever. I am only 20 years old and I can't live like this forever. I feel like this is destroying my life. I hope one day this goes away but I am starting to lose hope.
Hailey,
Talk to your doctor about switching your medicine to methacarbamazepine (tegretol). It was so much more effective than gabapentin. The side effects were really minimal. I hope you will consider speaking to your neurologist about having the mri/mra ordered. As I mentioned I would have never thought that I would follow thru with the mvd surgery but after suffering for 6 years with this I figured what did I have to lose? I am so glad that I found a very skilled neuro surgeon who had a very good background in these types of procedures; not only TN but several thousand mid brain vascular surgeries. He was very familiar with the mvd and as I mentioned used the minimally invasive approach which I think is a big part of failed surgeries when the more aggressive larger endo scope is used. Again, if your concerned about the procedure and want more info on my experience feel free to ask. I know you will want to try the approach that is the least aggressive to start with to see how you respond before considering surgery.
Gabapentin for me is only good for sleeping! And so is the Noratriptyline(sp?). Anyway keep pushing! Ask for other combos or other Dr.s. Hang in there:)
I totally understand your pain and frustration for your future. I used to be optimistic until this disease took over my life. Just keep fighting. I am sorry the amitriptyline didn’t work for you because it was a god send to my pain.
I had an MRI done a few months ago and they said there wasn't any "proof" of TN but they are treating me for it anyways and for a really long time the medication was working but now it has just stopped. I am making my neurologist change my medication to tegretol because I have heard many success stories with that. So I am hoping and praying it works for me. Some days are good and some are very bad. I go to the Dr. on Friday to get tests done and then back to the neuro on Tuesday so hopefully they will switch my meds instead of upping my dosage on everything. It isn't easy taking 2700 mg of Gabapentin! That stuff makes you very tired. And Jay if this next medication does not work I am going to search into having surgery. Thank you for all your information you have given me so far. I like this site because people on here actually understand what I am going through.
Hi Hayley. Im Helen and I live in the UK. Iv had tn for 3 years. It was diagnosed fairly swiftly by my gp who had treated it before. My MRI is clear, bloods normal and yesterdays meeting with the neurologist even questions the original diagnosis. I have received diagnosis from my gp, maxillofacial, and pain management doctors. All agree the pain is atypical but this neuro questions its direct link to trigeminal nerve. At the moment I am having a series of pain blocks into the occipital and tn nerves to try to relieve without so many meds. No luck so far with my first block. The neuro yesterday upset me though as he insinuated that maybe the problem was psychosomatic! I really objected to his attitude. He questioned whether I had really suffered with Bells Palsy at the onset of my pain and maybe I didn't want to close my eye because I was scared rather than I suffered paralysis!!! Idiot!
Its tough lovely girl but whilst we have these pain attacks and constant drone of burning and aching faces we need to keep on going. Im sending you love Helen x