I’m at the stage of feeling weak and just fed up with these horrific head pains they seem to be taking my life away I’m just would like a good sleep pain free even the food I eat is tasteless Tegretol has a lot to answer for plus the pain I’m in I had a good active life now it’s gone will it ever come back ,but more than anything I want to be pain free.and happy again,
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I am so sorry.
Same with me-food tastes like crap.My stomach does not even growl when I am hungry any more.
Maybe you can try another med.?
Sometimes tegretol does not work.
I know that there are people on here that are pain free.
Just not us -YET.
Big Hugs
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There are different meds and combinations that you could try to help with the pain. Food can be a problem if strong tastes set off your pain. Try to eat the foods you enjoy (and can eat!). I hope you get some good sleep soon. It will make you feel better. Mary
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I understand what you feel I have been there. I was to a point where meds were not helping. I finally had 2 rhizomes last July. The sharp electrical shocks are gone. I am still left with the numbness and a few needle pricks. I am not sure if it will ever be good anymore but I will have the rhizotomy again if the shocks come back. I hope you fine some relief. TN is the worse.
Gabapentin has been the drug that works for me combined with topiramate and lorazepam. Also take citalipram. Vitamin D, daily multiple, and ranitadine. I have had trigeminal neuralgia combined with migraines for going on eight years. Have had an MVD, stereotactic radiosurgery, and most recently, began botox treatments.
Have tried other drugs for TN, but my body didn’t tolerate them well. I still have pain, but can manage. I am very, very tired during the middle part of the day. Some days I am in too much uncomfortable pain to do anything, so my “go to” is television. My prior life was very active, full of outdoor activities, a fulfilling job, lots of socializing. No more, but I have developed new avenues of activities based on what I can enjoy now. It’s far from what I prefer for myself, but it is much better than more negative alternatives. Slowly, I am becoming adjusted to my present circumstances and learning to accept them. The more I accept my circumstances, the better I feel, and the more productive I am, both socially and physically. I never will be able to volunteer for anything that requires stress of any type, because stress like that irritates my trigeminal nerve.
And there are options beyond medication. TN is complex, with multiple causes. It’s not vascular compression for everyone. My wife has had it for 6 years. Right now it is very, very manageable. She has some pain occasionally when she eats, but other than that life is very normal. She is not on medication right now, but every once in awhile she’ll take tegretol for a day or two when necessary. For many, tegretol needs to be taken consistently, but she does not find that to be true for her. There are periods where she deals with very, very difficult levels of pain, but she is able to get that pain down after awhile and go into periods of remission. Here are some of the things that work for her:
-Stress management is possibly the biggest help. It’s remarkable the observable difference in her pain levels depending on how busy and stressful her life is or isn’t.
-If she puts something in her mouth and gets a pain shock then she doesn’t eat it. She is very disciplined in this. For days she ate nothing but oatmeal. It’s a sacrifice, but she has listened to what her body tells her and it has helped her avoid a great deal of pain. As she starts to go into remission she is able to eat a greater and greater variety of foods (although sugars/breads/other inflammatory response foods she still stays away from).
-She monitors the virus’ and bacteria’s in her body and works to keep them as low as possible. For her, there seems to be a strong correlation between coming down with a virus/bacteria and coming out of remission.
-She had scrambler therapy, which also seemed to help tremendously. This one is a bit hit and miss for TN patients. For her it seemed to work. She had the treatment over a month and a half ago.
-She’s a woman of tremendous faith. Prayer has been an enormous help.
By the way, she had MVD a few years ago. It worked wonderfully for 8 months, then the pain came back. It was after that when she decided there had to be a way to manage TN that did not include surgeries or medications.
Hi Jane7, I tried Tegretol when I was first diagnosed without any pain relief. They have changed my meds several times and the one that has worked the best for me is Lamotrigine (Lamictal-brand name). Right now I’m on a combination of meds to relieve my pain and for the most part I can continue with my life relatively pain free. These medicines make me sleepy, but if I keep active I can fight through that. My symptoms went into remission for several years and I was off medication totally during that time. Hopefully yours will do the same. Try not to get discouraged, we are here for you!
Hi Jane
I am sorry you are in one of those long awful periods of TN. If you keep a diary you can actually look back and see hours and days when you did not have pain. That can be a good reminder when you just finish screaming.
I feel similarly about the life that TN took. Kissing my handsome husband, driving with a stab and not crashing, trying to just get out, make a date and keep it. It’s hard. Don’t quit trying new treatments. I give myself a break then start again. I also do a meditation where I place my iPhone under my pillow and lay down. It often works me into a nap and done better pain management. I recommend getting this free app: insight timer. Get the one with the black rather than white back ground. Find a guided meditation with a voice you like. There are men and women and different accents. You can stop them quickly and find a better one then bookmark it to return to it. I fly to the Vleveland Clinic for TN management and it usually has been of great help. I was going to Johns Hopkins but did not find a true spirit of care or organization. Cleveland clinic’s head pain team are terrific. There are similarly good ones at UCSF and U of Oregon. Mayo offered little in my opinion. If you live in the south or east coast, you’ll need to ask others. Gloria Steinem has had TN since 1994. She still manages to speak and work so we know it is possible. Think of you today. A sister in hoping. - Jean Marie