I'm a "medical refractory"

So I thought I'd write a blog post and share my story, where I'm at these days. I've been away from this site for so long, I lived without TN pain for 13 mo. and then it all came back, but worse.

I was finally correctly diagnosed with TN back in 2010. I was 27. I have been dealing with TN pain for over a year and had been back and forth with different doctors, had a root canal that I didn't need, etc etc. I spent 2011 on a cocktail or Tegretol and Lyrical along with trying out different mouth guards, acupuncture, ice packs, etc etc. All kinds of things. In January 2012 I had MVD, however I did not have a compression. BUT my surgeon does have a high success rate with his patients with no compression by touching the nerve, kind of "shocking it" to restart (more or less, this is not medical talk at all). Anyhow, it totally worked for me. I was able to live for 13 months drug and pain free. It was delightful and fabulous.

My husband and I had been trying to have a baby this entire time and were unsuccessful so my OB and I decided to try Clomid. After 3 days on Clomid I could feel my face fluttering and the BAMB, full blown attack. I was in the ER 2 times within 7 days. That was in Feb. of this year. I've been back on Tegreol and Lyrica ever since. Two months ago my nuero and I decided to try and add in Topamax, to see if I could wean off of some Tegretol. NO such luck :( BUT now I can't seem to get off Topamax either. So now I'm on Lyrica, Tegretol and Topamax + I take a drug called indomethacin when needed (which is a DREAM and is the ONLY medication I've ever taken that helps with my TN pain).

I got to therapy ever Wed. to stay on top of the depression that comes along with living with TN — I have a wonderful husband, who is an emotional rock. I am self employed and love my work, but sometimes I think I am getting to the point that I can only work part time. My life is ruled by my drugs. The side effect of the meds are killing me — I'm a DUD, my brain is so so foggy, so slow, so dumb, I'm SO tired, I sleep at least 10+ hrs a night, I'm dead tired and ready for bed at 6pm, I have nerve pain in my hands and feet from the topamax.

But again — I am happy. Things that are great in my life — YOGA. I love yoga, I love meditation, I love my husband, I love my animals. Life is just weird. It's hard and frustrating, TN. I think, WTF!!! all the time. It's not fair, but I let myself get sad for a night and then I wake up and just tell myself to put my big girl panties on and deal, and keep on moving forward.

That's my update. I'm kind of a dud these days! ;)

I'm happy to hear that you're happy and able to live your life despite the pain you are still having! I have a question about indomethacin though. How fast does it work? I am looking for something for breakthrough pain and is wondering if this would be a good thing to suggest to my doctor.

Hi Jessica,
Prior to my MVD this past April I read your detailed thread in the MVD group over and over to learn from yours and others exoeriences…(thank you) it was so helpful!
I’m sorry to hear off your continued dance with the medications and pain.
This roller coaster ride called TN sure does take a toll on us.
Glad you can do Yoga and meditation. I love my meditation practice, helps keep me a little more sane… ; )
My pain has intensified again, so I too am dancing with the meds again…my MVD worked to give me pain free days ( prior to MVD my pain was resistant to meds) and it lessened the pain overall so that I was able to enjoy days and weeks without pain.

One day at a time. Some days are easier than others…
Wishing you well, glad you stopped by to update…Don’t be a stranger!
((( hugs ))) Mimi

You have a great husband … Bless you all … I hope you will get better soon & get rid of these meds. : )

StudentNPain - yes, it’s been amazing for me. I would ask your Neuro about it. It’s the only drug that has helped me when I’m in pain and when I’m in a cycle I take 25mg 3x a day. It’s an anti-inflammatory which isn’t something I would have ever thought would help - but it’s a great tool to have in your medicine cabinet.

Thanks everyone - I had a total crap pain day today and have been in bed for most it. I’m hopeful tomorrow I will feel more on top of it! Need to prep for thanksgiving!

I’m glad my surgery advise was helpful for so many. It was really such a positive experience for me. Hugs to you all!