I've been pain free since my first episode in early September. Taking Baclofen and Elavil - seems to be doing it's job. Every once in awhile, I feel like the pain is "right there" and it makes me nervous, but hasn't happened. I haven't really read about anyone being this lucky. Is it possible for it to continue this way? Has anyone else experienced this? In reading the discussion posts, it seems that I am very lucky and I am very grateful - just wondering if I would continue to be pain free without the medication?
I don't know if this fits your case history but I've seen numerous anecdotal stories about type 2 TN pain treated with
trycylic medication, such as elavil, This is the medication of choice. There is then a higher probability of success IF idiot practitioners do not try invasive treatments,do begin the medication almost immediately, and the patient toughs out side effects as needed for a three week to three month period. This course of treatment has been known for decades. Unfortunately, practitioners too often fail to inform themselves. Congrats. Can't offer any guidance on whether to stop medication. My guess is that you find a well informed neurologist to address your question. At the moment you are in a position of strength.
hi nora i to have periods of pain free and also am very nervous as i know the devil is right there but when i first experienced this horrible pain i was directed to a osteopath and i see him about once a month and i believe that's why i am at the moment not taking any meds
on 23rd December i was not able to hardly talk and this man took me in at 8 30 that night and i was completely pain free for all of xmas at the moment i just am very carefull i wear a balaclava and a hood and a scarf when i go out even friends don't recognise me
i feel so blessed when i read what others are going through and praps try something different
i did at first try a chiro but found it made it worse
I had periods of total remission with no drugs and would even forget just how bad it was and think it was gone forever.I have type 1 and took tegretol/carbamazepine which was really nasty to me.It always came back and i think stronger each time.I hope it's not the same for you.I finally had GK and am pain free since 8-13.I still feel the ghost on my shoulder,but just try to enjoy every day.
My current Neurologist (I've had many since I got TN 46 years ago) reported to me that he got left sided typical TN, immediately took tegretol, and it subsided within a few days, and hasn't returned. But really, I don't think anyone could answer the questions you pose. Just follow your doctors advice.
My lay-person "advice" would be, ask your doc about generic Tegretol, avoid bending over repeatedly - like to empty the bottom drawer on your dishwasher, and use that nervous energy you have to concentrate on relaxing. In fact, give every job in your house that requires you to bend over to someone else in the house - feeding the dog, emptying the garbage bins, dishwasher, etc.
Hi Nora,
That’s awesome! I’m so glad you’ve had success to date, I hope that continues a very long time! Enjoy, enjoy, enjoy!
Many people experience pain free periods ( on meds) and remissions ( no meds), unfortunately, you won’t find many success stories on forums such as LwTN, as most people stop participating when they are pain free, they go out and enjoy life! As they should. We are very fortunate here, to have several members who continue to participate while pain free.
So thanks for sharing!!
I was very lucky when in my first year of diagnosis I was able to start weaning off my meds after 8- 9 months with my neurologists help/advice. His theory has always been if you are completely pain free ( no twinges, no breakthrough pain etc) on meds for 4-6 weeks start weaning ( with doctors advice on how to do so). The meds we take aren’t good for us. So we did that ( back in 2002) and I experienced an 8 year remission on my right side and a 10 year remission on my left!!!
My right side came back in 2010, at 800mg Tegretol XR my pain was well managed, but each time we tried to reduce the med, it was a no go, with pain/ electric shocks starting within 24hrs.
My left side “woke up” in 2012 and no matter how many meds or how high the dose, the pain was uncontrolled and worsening, it was med resistant. This led me to MVD this past April.
It was successful in that 3 compressions were found and I experienced approximately 4 months completely pain free! So awesome! By month 5 my pain returned, I’m still playing the dance with my meds trying to find the right combination to manage the pain at 8 months post op.
Living with TN is a dance, your best tool is a supportive doctor with some experience with TN.
As for your question, you’ll never know unless you try. I’d discuss this with your doctor.
Glad that your meds are doing their job! Pain free is always a good thing...
I also get at least one big flareup come fall. It's always there threatening to hit again. I've found that I've had to modify my life and try to remain as calm as possible (doesn't always work) I've been also diagnosed with high anxiety, I often think that there is a connection to the worsening of the pain because I also use Ativan for flare ups, it helps to calm the pain down.
I've tried like others to reduce/wean off of my meds and for me it has only ever worked in the summer, and even then I wasn't able to get completely off of them. It's tempting but I would proceed with caution and like others have said talk to your Dr. first.
Like mrl said "if it aint broke, don't fix it". Just enjoy that you feel better and that the meds are working.
I've had times when I'm feeling better and then I over do things and BAM pain comes back. The leaning over too much is so true!
I'm alone here and there are days when it's hard to put the dog and cat dish down on the floor and the cat's treats sometimes just have to be dropped on the floor and hope for the best that I get them as close as possible without hitting him on the head with them, lol. Or I'll fill up their dishes enough for at least 2 days. Another tip I've taught myself is to not look down but to keep my head up as much as I can when I put their food dishes down. I suppose when the blood rushes down it cause pain.
It's always nice to hear of someone who is pain free!!!
And too true Mimi these drugs are so not good for us. Now that I'm on this site and feeling more grounded and supported I'm hopeful for this summer to change even more of my lifestyle and to work with the Dr. to reduce the Gabapentin.
Is a progressive disease… Might need higher doses, different meds as your path progresses. One number one rule…if someday you are a candidate for MVD surgery…find THE BEST…and do not have any other nerve damage procedures beforehand.
Get the book
STRIKING BACK BY DR KEN CASEY
learn all you can for the future medical plans that YOU need to be in charge of.!
I like to hear these drug combos that work because my boy can’t really tell me if his gabapentin is doing anything. Reason I can’t tell is cause he is in and out of remmision I guess is what to call it. He will have pain no doubt nearly everyday but I never no really how bad cause he is so young. I see it coming maybe a day or two at most before it hits. Then it becomes obvious TN is here. This puts him pretty much in bed restless and 24/7 pain all the time unless he is asleep. These attacks are as short as three days and the one before this session lasted nearly 6 months. So I can’t tell what helps or don’t. I know that he can’t take tegratol due to other meds he has. If it affects his transplant he don’t get it.
Is there any way to email or call a top neuro in the country for TN to consult for your son's case? It has taken me a couple of years to find the right words to even describe my own pain and be my own advocate. You are in a challenging position with your little one. Striking Back by Dr. Ken Casey has been a blessing for many of us.
Nora, thank you for posting your amazing pain free life with baclofen and elavil. I just started elavil 50 mg. at bedtime and I take baclofen 10 mg. 4 x. I am waiting to see...what dosages are you on?? Sharon
I just read all the comments regarding Nora and anyone who experiences pain free days again. Do continue to post, this is what we all want to hear, someone got relief. We are all different and respond differently but you never know if someone will do as well as another with the same treatment. Sharon
Hi Nora! I had my first attack in January this year…it ladted for two weeks…two weeks from hell I might add! I have nit had an attack since! I do experience numbness on my tn slide and stinging in the ear but I have nit had a full blown attack again! I am so afraid I migjt have another but I am so thankful that I have not! I hope and pray you remain pain free!
Hi its been 2years 6 months since I had a TN1 attack. Why? I dont know, my Neuro did say it was possible to have a one off attack mine was a week of TN1 pain and a year of mild TN2 which has now ceased. I am hoping its the same for you Nora, myself , Annemarie and anyone who is lucky enough not be suffering xx
The peace of being pain free.....it's a beautiful thing and yes I agree Granny that we need to hear about those who are experiencing it!
I just had a rough night with TMJ that I'm sure is morphing into a TN situation in the bottom left side, my TN is usually the upper left side. I managed to find a few spots on the pillow to be able to sleep but soon after I got up it's trying to come out again.
But that's ok because I know that it was brought on by eating and laughing over the holidays, last night was my Daughter's dinner and Christmas day was my Son's dinner. So now it's time to slow down again and hopefully there will be less pain.......
Wishing you all peaceful, joyful, pain free days!!
So far I find Gabapentin is doing the trick…I have been on it for just over 2 years. I do have to still be wary of my triggers though..in my case too much caffeine and citric acid…and cold breezes are sheer hell. But all in all I am able to just get on with live about 85% of the time….which i consider a reasonable success. Glad you have also found your best relief!!
I've had TM Type II for about 15 years. I finally got some relief about 8 years ago when I started taking Amitriptyline, 10 mg once at night. This provided amazing relief, with the occasional breakthrough - about once a month, lasting 3 days. During those days I was able to get additional relief by cranial massage therapy and a cold gel pack at the base of my neck. In the recent 6 months, the meds have not been working very well. I get a burning pain in my temples, jaw, and around my eye socket. I've increased the dose to 20 mg and I'm still having some pain, though not as bad as when I wasn't taking the Amitriptyline. I think every individual is unique; I consider myself quite fortunate, and you may be even more fortunate. I don't think there's any way to tell except to wait and see, but the fact that you've responded so well to meds is hopeful. If you find the pain returning, you may have to increase your meds or try adjunct therapies. I hope you are one of the lucky ones!
I find this condition so frustrating because people can't tell what agony I'm in by looking at me. When I'm not feeling well enough to socialize, for instance, it's hard to explain why. And unfortunately most people (even doctors) have never heard of this condition, and I suspect they think I'm making up excuses when I try to explain it. I find that almost as frustrating as the pain.
Not to mention that when we are not feeling well enough to socialize, having to explain why we cannot participate takes so much effort that it is nearly impossible at the time. For me, when I am trying to explain and getting questioned, I get frustrated, which increases the pressure in my jaw and makes my pain worse.