My mother has lived with this disease on & off for a number of years.

For the past year, there hasn't been a day when the pain wasn't debilitating.

As indicated in the link, the slightest touch of the face could cause pain...the wind when out for a walk, eating was excrutiating...talking was excrutiating.  My mother, the woman who I knew to never complain about any pain, never saw doctors, never took pain meds.. would sit & cry just by trying to eat her breakfast.

Though on major pain pills...which at times got her loopy, the pain would not have any relief.  multiple trips to the doctors, with varying types & trials of drugs...no impact.

To say she was despondent was an understatement.  The nickname for this disease is real...as she did not want to live any more...and we had a health crisis due to it, last spring.  (BusyMom & i had been out for lunch...)

I am pleased to share that last week, the doctor decided to try a combination of drugs on her.

On Friday morning, she woke up, with no pain.

She talked to me on Friday afternoon, and she was like a giddy school girl....she had had no pain all day.

Saturday we checked in...was it still ok?  any pain -- nope...-- YES!

Sunday -- she went to church, and for the first time in over a year, was able to sing at church and talk to people

Monday, she was experimenting by eating foods that required a bit more chewing -- still no pain.

Today, it has been a week.

So for those who feel like giving up, who do give up, and for those who love those people....I wanted to share this story to say....don't give up.   Keep asking, trying, chasing for the solution.

And to doctors, who also don't give up...who keep reading , looking for new studies, etc, ...i want to say "thank-you"

My father has lived with trigeminal neuralgia for 17 years.  His pain threshold now is higher than any person I know.  A few years ago, he broke both wrists and smashed two vertibrae in a fall.  Within a day, he asked to be taken off the pain meds for the breaks so he could go back on the pain meds that targeted his head, because they were not compatible.

He has been to countless specialists.  The most common reaction he gets, is one of sympathy, and a warning that if any specialist wants to operate - run.

I have to run, but I could go on and on about this condition.

Chansen, if you like, i can get information from my mom, on what med combination she just went on.  I tell you, it is a like a new lease on life...

Pinga thanks for sharing this story.  I met your Mom a few years ago.  A delightful woman.  I had no idea that she was suffering pain but I do seem to remember that she mentioned that she had to be careful what she ate because she had trouble chewing.  Naturally I thought it was a dental problem.  I am so glad that she has her pain undercontrol.  It must make a world of difference for all of you.

Seeler, you are right....

Back then, it was intermittent, with some periods of days on end.

It was only the last year, where there has been no break from the pain.

To hear my mom laugh again, is pretty good.

Pinga: I had dropped into Wonder Cafe this morning to see if anyone had posted anything about those American kidnappers down in Haiti/Dominican Republic, but was distraced by your timely post.     Please, by all means share the good news of her particular medication.  I've only recently begun taking drugs for TN (in my case associated with MS) but despite them, this morning's been a doozy.  I'm glad for your mom and for your sharing, but specifics would be helpful.   And I hope it continues to go well for her.

This is such a horrible thing to deal with.  Pain, more pain, endless pain.

A friends mother lost her life to it when she just gave up - quit moving, going out, visiting, talking, eating. 

I so glad that their is now some medication that control the pain and gives people back there lives.

Greetings!

That is great news that the medication is helping your mom, pinga.  I have never heard of this disease before - thanks for sharing.

I hope your mom continues to be able to live pain free . . .

Hope, peace, joy, love . . .

Thanks for this information Pinga. What a horrible condition. I am glad your mother has found some relief.

 I know someone who had something similar, but I don't know if it was TN.  She had been on pain meds for years, and had surgery to cut the nerve but it didn't work.  She had surgery this year that finally worked, something was placed between 2 nerves to keep them from touching was my understanding.  She's completely off one medication now and is slowly going off some of the others.  I look forward to getting to know the 'new' her!  One who isn't all loopy with the drugs.

Pinga, hopefully your mom stays pain free!

Wonderful news pinga!  Must feel like a bit of a miracle to your mom (and dad who lives with her!) to be able to engage in life again without that constant pain.  Thanks for sharing the news, and I pray for continued effectiveness of her meds. 

Such great news Pinga. I'd never heard of this before so yours was an educational post as well as a very happy one for me. I always like learning about different issues like this that people deal with. I think it help get a greater perspective on life and helps you understand what different poeple have to deal with.

Pinga,

I admit I did not read your second message before I replied.

My father is on a couple of different medications.  Prednisone is one.  He has been offered medical marijuana (he declined), and briefly went on some habit forming drugs before getting off them for fear of becoming dependent.  If you have some information on other medications to treat the pain, I'm all ears.  Or, I suppose in Internet terms, I'm all inboxes.

My father stays connected to his doctors, so I'm only cautiously optimistic here.  His TN was triggered by a severe case of shingles that attacked his inner ear and lead to the neuralgia.  He once spent a weekend at The Mayo Clinic in Michigan, where among the specialists he was sent to, was a shrink.  You're right to say a lot of people with TN commit suicide.  They wanted to assess his mental state.

People ask if it's like a migrane.  In some ways, I suppose it is, but it never goes away.  It is pain that just never stops.

Wonderful news, Pinga! I hope that your mom continues to experience this relief.

Hi folks

Mom had been on lyrica.   A few years ago she was on  carbamazepine (tegretol) but the meds made her loopy and wouldn't work.   Lyrica took the edge off at first...but wasn't working.  So  the switch was to have her take  the lyrica and the carbamazepine..... and since she did, she has been pain free.

kay, the road you mention is the road we were on in the spring.....it was not easy to work through...

For those who have it, if you wish more information, I can get dosages, etc from my mom's scripts and mail them to you to take to your physicians.

For those who have it, or love those who have it....i nod my head with you...recognizing it is hard to watch those you love experience such profound pain with no end in site.  

re the surgery...yes the understanding is it does not work (as in the first one that was done) and can have pretty tough side affects, such as like the side affects of bells palsy...thrilled that a different surgery worked for the person.

Pinga - I am sorry you had this challenge to deal with.  It is so hard to see someone you care about dealing with a life that doesn't seem worth living.  It is great that things are better for her, and you, now that medication is helping.

Thanks for the information.  Lyrica (Pregabalin) is quite new, and I passed the name of the drug on to my father.  He has been on Carbamazepine, and reports that "it's a hell of a drug" - in a bad way.  I'm not sure he can be convinced to try both together, but at least it's something he can talk to his doctor about at the next visit.

Thanks again.

carbamazepine is a hell of a drug...he is right...mom hated it.  she takes one before she goes to bed at night....and it is the combo that seems to have done the trick

Pinga - so glad you mom has found a med that works!

I was given lyrica in the hospital after my total knee replacement to help with the nerve pain....no side effects were noted. 

thanks Pommum.  I had a cold last week and through this week, and so haven't been to see her...so looking forward to seeing her tomorrow.

Pinga, thank you for sharing this story. I am so glad to hear about this new found pain free living for your mother. And I am really hopeful that this meds combo continues to offer this relief for her.

Pinga: I'm not a frequent poster, but the nuts and bolts of this thread have been very timely and most helpful and I thank you for initiating it and for the info.  As I indicated, the knee-buckling sort of TN that demands medication is relatively new to me, and though Carbamazepine seems to help, the side effects do make you want to find the minimally effective dose, quickly.  If couplng it with Lyrica helps in that regard, reducing the side effects....  Thanks again, to you and to chansen.

Hi Pinga...I can't imagine how heartbreaking this has been for you to watch but so glad to hear that your mom has found something that works for her.  I hope to hear of continued success. That big wind that blew through here must have been a collective sigh of relief from the Pinga family!

Wiliemae....I am so glad I posted, if it helps you & Chansen. 

Penny...yes, it is a great thing.  To think we can plan to do things, maybe go out for lunch or dinner sometime,etc...with Mom enjoying is a great hope.

I was reminded of this blessing tonight, and thought I would bump this thread, to share that my Mom is still pain free.  Once in a rare while she will have a tinge...but, knock on wood...still doing well.

She had a cold, complete with hacks, etc...and it was amazing..in an odd way...as she wasn't in absolute misery when coughing...just the normal impact of an 84yr old with a cough.

so...not sure if the others found relief, but, thought i would let you all know.

Thanks for the update, pinga! Good to know that your mom is doing well...

After being sick for many years  It took me several more years after having my HIV be in intermission to really believe that the medications I was on would keep working. 14 years later they still are.

Good for your Mom.