I am sorry to ask another question. However, this is the first place I have found where people actually get it. This last time my pain came on and lasted about 4 weeks, which is the longest yet, then the last few days started to ease up. My usual pattern is the pain is manageable for about 2 weeks and then hits me for about 2 weeks. This has been the pattern for a year. My meds 1800 neuronton and 200 tegretol make me so tired and quite frankly I feel a wreck. and the pain breaks thru these meds. I really want to reduce the meds and see what happens because I really can't take how I feel. I guess I really can't take it either way. I guess there really wasn't a question there just feeling really frustrated at this point and not sure where to go from here.
I'm sorry you are feeling so poorly Wendyjo. Do you think it might be time to pursue MVD or one of the other surgical options? Have you seen a good neurologist or neurosurgeon? I understand your frustration. I'm currently in week 6 of continual pain and my meds are barely taking the edge off. I'm uninsured until Jan 1 when I plan to start seeing a new neurologist and hopefully find treatment that works for me. Hang in there and don't give up on finding what works best for you.
I understand how you feel but for me right now the 500mg of Tegretol with 20mg Cymbalta has been keeping the tiger at bay. Have you experimented with various combinations of the medication so that you can tell which of them are making you sleepy? I would go slow and document your findings as you try various things. Also maybe surgery is the way to go for you. Also work with your doctor to wean you off the medication and research side effects as you withdraw. Gosh don't want you to experience any additional pain. Here is sending you a wish for a pain free day! It is OK to vent! :) That is why we are here for each other. Tina
What I did… Got the ideas from here.
FIRST…had my GP, CALL IN A SCRIPT FOR LIDOCAINE PATCHES for my face…12 hours relief.
I was able to lower my sucky meds!
SECOND… asked my neuro a script to call in to counter balance that my IQ was slipping away on meds…
So he called in for me, Ritalin, …as needed… The times I had to have more energy and focus…he does the same for his epileptic patients…they are on the same meds that make us feel like shit!
My remission has been in and out a few times, finally after surgery…no meds…no pain.
Keep learning alllllll you can!
I truly empathize with you Wendyjo. I just came back from the e.r. because the pain was so bad. I have been suffering for the past 3 yrs. Currenty on 2700mg. Neurontin and 1200 mg of tegretol. Still barely making me able to function. At the e.r. they gave me a 2 week regimen of high dose corticosteroids and am hoping this does something. Hoping in January to see the neurologist. Hang in there. We are all in this together
Christine
I also did not like the medication and yes the pain can be unpredictable…I had the surgery in 2010 and except for a couple of minor instances, have been pain free. However, I think I will always live with the fear of a reoccorence. My very best to you.
christine said:
I truly empathize with you Wendyjo. I just came back from the e.r. because the pain was so bad. I have been suffering for the past 3 yrs. Currenty on 2700mg. Neurontin and 1200 mg of tegretol. Still barely making me able to function. At the e.r. they gave me a 2 week regimen of high dose corticosteroids and am hoping this does something. Hoping in January to see the neurologist. Hang in there. We are all in this together
Christine
I always backed off the meds as soon as the pain allowed it.My Tn would totally disappear between episodes,but came back worse each time.I don't think it was going to leave this last time though.It would ease up and then slam me terribly.I decided to have Gamma Knife done and am pain free now the past 3 months or so.If it returns i will try the stimulator implant.Yea,the meds suck! Hang in there.
I've been dealing with TN since November 1998. I used to play around with the med dosage because I hated the way they made me feel. (Tegretal and Kepra) My best advice is to keep a constant diary of every thing; food, weather, feelings, any thing that triggers the pain. You'll find a trigger. Take the drugs. You'll find a combination of drugs that works. BTW I also had gamma knife surgery and it really didn't help.
I had an MVD and I have been pain free for over 5 years. When I had TN and it would go in remission I would go against the doctors orders and quit the meds until it came back. It was bad when it came back, but I found that if I were to put a half of tegretol under the tongue it worked fast. I had it for 12 years before I had the MVD.
Please, my friends, take a look a laser light therapy. Sounds a bit like a commercial I know, but honestly after trials of pharmaceuticals and other alternative therapies… Even MVD, the only thing That has given me any sense of relief is an incredibly non-intrusive Theralase.
You might find it at a physical therapy office or in other pain management centers. I’m happy to share more. Wishing you all pain free days.
Here in Europe, Tegretol had its time. I get Lyrica (=pregabalin) 150 gr. and Contramal (= Tramadol) 200mg retard.
3 doses during the night as my problem only manifest itself during the night. I havo no side effects and the pain is zero after the second dose. The tirdth time I wake up with only a feeling of pressure. SO, I sleep 3 or four times two hours. This is specific for my case only probably. My Neuralgia is more of a neuropathy as the nerve is damaged with no chance of repair. Mostly I also uses the Isreali Painshield wich makes the pain less, without any doute. The times I stay up, i write e-books on Computer Tips. Otherwise i just sit there and think. In this case my time is usefully spent and it gets up to 4500 downloads. (Sorry, it is in Dutch).
Regards, Walter
See above; I made a mistake. by writing in the wrong place.
Walter
I have only had TN for 2 months and was a mess on Tegretol . Am now on 600mg twice a day of Trileptal and so far so good. Going to neurologist mid December who specializes in TN so wanted to see if you have a good neurologist who can advise you. Prayers are with you and this is our have for questions and support...
I would like to hear more about this.It is a new one on me.Never heard of it.How does the procedure go?Did it kill your pain?Do tell please.( :
cveltri said:
Please, my friends, take a look a laser light therapy. Sounds a bit like a commercial I know, but honestly after trials of pharmaceuticals and other alternative therapies... Even MVD, the only thing That has given me any sense of relief is an incredibly non-intrusive Theralase.
You might find it at a physical therapy office or in other pain management centers. I'm happy to share more. Wishing you all pain free days.
Hi Wendyjo,
I finally just had my kidney transplant so am doing good, but now that pain is gone the jaw pain has come back. I never get away with no pain whatsoever. I have very bad arthritis in my jaw joints, the right side has the pain and also some TN. I could not take Tegretol, it caused bad side effects for me. I couldn't have any TN surgeries because of my kidneys, nor take any ibuprofen type drugs. Just prior to the transplant I had the radiation treatment for the shocking I was getting and that worked for that. I had all 3 types of TN. Now I've been having the pain down into the teeth, gums and down to the chin, but I do get a break on that now and then. This is a strange disease. I'm happy for anyone who can get relief from it. So far some of mine is better, but not all. It's difficult at times to concentrate and work, but I keep plugging at it. I have to take drugs just to be able to get to sleep at night, it's my only relief. If I don't have to talk or eat I can hold it off for awhile after I wake during the day.
I hope you get better soon. Do you also get the headaches? I get those once in a great while and they are the worst and last 2 weeks at a time. I feel like I will die during those times. I'm hoping they won't come back. I'll take everything else if I could just never get those again!! Have you thought of seeing a new doctor? I'm not happy with my neurologist and will see someone else if I go back. He just prescribed me stuff and kept sending me to other doctors because he couldn't help me. One of the other docs got me the radiation treatment even though he told me it probably wouldn't help me.. But it did partially. So hang in there Wendyjo. Try a new dr if yours isn't helping you. I don't know what neuronton is but it sounds like a lot of meds. I've had oxycodone for surgery and that took away the TN & TMJ pain, but I have to go back to taking hydrocodone and that just cuts some of the pain some of the time. But we do what we have to do to keep going...
I wish you the best. I'm in week 9 of my transplant and can't go out in public yet but I feel so blessed!! No more dialysis. And I did not know the person who gave me one of her kidneys until the Saturday night when we all had dinner before our Monday surgeries. I call her my Angel. So miracles do happen!! Lori
I would also try combinationof medication. A lot of us are on narcotic and anticonvulsant I also add advil too. This is with the motor cortex stimulator which is helping me so much!
what type of surgery did you have? I had gamma knife surgery at Barrow Neurological in Phoenix about 1 1/2 years ago and the pain is gradually returning...I have scheduled a visit with a neuro here in Coeur d'alene and will make my way back to Phoenix for possibly a more invasive procedure.
that's very interesting about the Ritalin, Kc.... thanks so much for helping so many of us, even though you are pain free now, so many Angels on this site :)
Kc Dancer Kc said:
What I did..... Got the ideas from here.
FIRST....had my GP, CALL IN A SCRIPT FOR LIDOCAINE PATCHES for my face....12 hours relief.
I was able to lower my sucky meds!
SECOND..... asked my neuro a script to call in to counter balance that my IQ was slipping away on meds.....
So he called in for me, Ritalin, ....as needed.... The times I had to have more energy and focus.....he does the same for his epileptic patients....they are on the same meds that make us feel like shit!
My remission has been in and out a few times, finally after surgery....no meds....no pain.
Keep learning alllllll you can!
If you are coming to USA…are you looking for MVD surgery for TN? Best odds, better than gamma…find THE BEST MVD surgeon in Phoenix or travel elsewhere…here… Look at doctors tab above! I am 2 years post op…pain free , med free…
mikey said:
what type of surgery did you have? I had gamma knife surgery at Barrow Neurological in Phoenix about 1 1/2 years ago and the pain is gradually returning…I have scheduled a visit with a neuro here in Coeur d’alene and will make my way back to Phoenix for possibly a more invasive procedure.