What to do when in pain?

I have had TN for about 5 years and it has been progressing as this disease does. I am currently on my max. dose of Lyrica and have started to experience attacks of pain lasting anywhere from 5 - 15 minutes. (It feels like an eternity!) It's an incredibly sharp stabbing pain like a knife or icepick is going up my nose and into my brain. It can sometimes enduce profuse sneezing along with the pain.

Does anyone have any recommendations on how to get through the attacks? I just claw at anything within my reach and squeeze as an instinctual reaction. Part of the frustration is that there is no where to go with this pain. I feel trapped. I can't put ice on it, I can't lie down, I can't get a hug from my husband...I'm just frozen in agony. What are some other experiences out there?

Thanks.

First…have you done lidocaine patches on face? Have you tried three or more meds or med combos?

Are you a candidate for MVD surgery? It is highest odds 90% + to get pain lower or gone, into remission,
within the first 5 years or so. But only high odds are best with best TN surgeon.

It’s still fixable at year 9, just less relief perhaps.

I was at year one, and was done with meds and pain…hoping

Year two of post op…no pain…

Glad to hear you have had success with the operation! Thanks for your reply.

I have never heard of lidocane patches. I have tried 3 different meds. and I just got a hold of my neuro who has added another medication to my lyrica, so I guess there is my first combo!

I know that the earlier you have the operation the better. I don't know that it would be feasible for me as when I went for my first MRI to find out what the pain was, they found a couple of brain lesions and was diagnosed with MS. I don't think it's due to something compressing on the nerve. They did another MRI to check and it was clear.

Someone else recommended a pain management specialist which I hadn't thought of either.

This is only my first full day on this site and I have already received alot of new information. Thank you!

Also find out if
fiesta MRI
is something your doc should look at!

I sit in a ball and cry and rock. I know that isn’t the right answer. Best of luck and if you find something please share.

Actually, that reply makes me feel better! At least I know I'm not alone in my reactions to the pain. Thanks, Stephanie!

I was just recently diagnosed with TN two days ago so I have no words of wisdom. I do agree that having this site is a Godsend. I feel that someone out there knows my pain. Family, friends, and coworkers will compare my pain to their headaches and misc. pains. But it is NOT TN. TN is in a class by itself and you all know what I am speaking of. "You feel my pain". I must say that a lifetime of this pain is just not acceptable. I'm trying the med route first. I am a cancer survivor so surgery is not really appealing to me. Oh well. We have to keep, keepin' on!!

I'm sorry to hear how much you have been through already after surviving cancer. You must really feel like it's a bad joke to be diagnosed with TN after that!

The meds are a good place to start. I had much success with them for a few years. They don't seem to be working as effectively for me now though.

Given that you just got diagnosed and are on this site, you clearly will be doing your research; which is necessary.

The pain is indescribable to most people. Only the ones who see you going through it know how bad it can get. I agree with you when you say I lifetime of this is unacceptable. I often think, 'if this is what it's like now, how bad will it be in 2, 10, 20 years?' I know that it's no help to project the future etc.. but it's hard not to.

Be well.

It is nice to know your not alone or crazy. I am having a bad spell for the last two days. Today may take me to the ER. Hang in there YOUR NOT ALONE I want to rip the side of my head off some days.

Hi Amod,
in my case, I would not survive without my “Magic Bag” http://magicbag.com/ it’s a reheatable (in the microwave) bag that I use in my most painful times…heat helps to comfort and minimize the intensity of the pain for me…I also use a lidocaine cream called “Emla” that I spread on my face, jaw, along one side of my nose…it provides me with 15- 20 minutes relief. sometimes I’ll use orajel on my teeth…I wish I could find something for the ice pick stabbing in my ear…
I try to slow my breathing down too, deep slow breaths and meditation help.

Welcome to LwTN, ((( hugs ))) Mimi

Hi Stephanie!

I'm having very bad attacks the past 2 days also. My 9 yr. old daughter heard me this morning at 8:30am and said she wanted to cry because it sounded like I was dying! I try to muffle my moans and cries into a pillow but apparently that didn't work as well as I'd hoped! : )

Do you have constant pain, or does it come and go? I'm curious to know at what point you decide it's time to go to the hospital? What can they do for you there? I've contemplated it when I'm at my worst (and the attacks are getting more painful) but it passes in 15 - 30 mins. So I don't know if they'd even take me.

Anyway, I hope your trip to the hospital is helpful.

Thinking of you...

Anne-Marie


Stephanie said:

It is nice to know your not alone or crazy. I am having a bad spell for the last two days. Today may take me to the ER. Hang in there YOUR NOT ALONE I want to rip the side of my head off some days.

Hi Amod, I know how you are feeling. For the last week my pain has been at it's worse, it has been waking me up at ridiculous hours in the morning with a sharp stabbing in my eye and nose. This morning has been the worse, I have been in floods of tears, but when I get up I for a while I am ok then it starts again, grrrrrr. I can cope with the pain when I am up and I am doing things, it is when it suddenly wakes me up that I am in agony. I hope things get better for you and the rest of the community who is dealing with this disease. Good luck in the future.

hi amod...

usually, for me, it's sitting at the kitchen table with a towel in my mouth. I don't know why, but it helps some...maybe helping to keep my mouth still? (all my pain is in my mouth) I don't know. But this is NOT a good solution..so i try other things....

Also, if i take a very hot shower and just stand there with the water hitting my shoulders for a while, the pain eases up. It doesn't last long...usually the pain comes back with in 10-15 mins after leaving the shower, but any reprieve is welcome when i'm in that kind of pain.

I can get some relief from a heating pad pressed to the area right in front of my ear on the pain side. Even though the pain is in my mouth, putting pressure and heat there in front of my ear seems to help. It doesn't go away, but eases up enough that i can stop crying for a bit. (again, any reprieve...lol)

However, i tend to get the most relief with taking an extra baclofen and going to sleep (if i can.).

....and some days, nothing works. And i just do the silent, open mouthed, cry thing....

~Wishing that we all find a way to be pain free

Mistee