Feeling defeated and in ALOT of pain

General General TN & GPN (Old Site)
1

Hello everyone! I need some help! I was diagnosed with TN (type 1) on the left side of my forehead just over 3 years ago. Since then I have had MVD, 2gamma knife, andbdone MULTIPLE medicines. The surgeries did not fix anything, as a matter of fact they sort of made things worse! Now I have a constant burning pain and TN episodes in the entire left side of my face! I went from just a few bad attacks on my forhead to constant pain in my face but still with those episodes!!! I can't handle the meds like gabapentin, neurontin, depakote etc... I get so dizzy I can't function!! Now, I have been having a pretty bad episode for 4 days now! No matter what I do it's right there, relentless HORRIBLE pain!!! I'm miserable and I just can NOT take IT anymore!! Someone please help! I want to go to the er but I'm so tired of getting their looks like I'm crazy or lying so I can have pain meds! I always feel like people are looking at me as if I'm a pain med addict!! I feel alone, depressed and like I'm just barely hanging by a thread now! I used to get a medicine called Dilantin in an IV at the er, however I apparently am VERY allergic to it! Sigh.. So is there ANYTHING someone can read ccomend?!?!?!?! I'm desperate! Do pain meds work for anyone? What about pot? Acupuncture? Something!!!!!!!

Thanks you!!

2

You just described my life!

3

Here’s a list of meds compiled by KC that others have used, tried or recommended.

http://www.livingwithtn.org/forum/topics/for-those-on-the-medicaion-merry-go-round-i-ve-compiled-a-list

I’m so sorry your struggling, it’s exhausting, I can certainly attest to that.
We must keep on advocating for ourselves, and read, research all we can to make better informative choices for our care.

I have bilateral, med resistant TN.
Unfortunately not much works for me…multiple meds, MVD, holistic , etc

I found an oral pain specialist (via my new neurologist) who was able to break my pain cycle twice for a short but very sweet ( 24-48hr break) by injecting me inside my mouth into the nerve by my lower teeth as well as in my upper cheek with novacaine, (dental freezing).
No one has ever offered this to me, and I’m not sure how easy it would be to find someone to do this…
I could use this freezing weekly, but have only used it twice so as not to abuse it.
Via this same doctor I tried botox for the first time in December.
Two weeks after treatment I experienced 5 days in a row of minimal pain, so far nothing more…
I’m scheduled for a 2nd treatment in March. In talking with others who have tried this the results are varied. Many I’ve spoken with have said that over time the more you do it the better results.

When my gums and left side of tongue are in excruciating pain, I use oragel for a few minutes of relief. I find it burns for a few seconds but dissipates and numbs the area slightly.
I also use;
a Magic Bag, microwaved heating bag to help soothe
Emla, a lidocaine mixed cream
On occasion I’ll take 2 Advil every 3-4 hours which is a crap shoot, sometimes it helps minimize the pain sometimes it doesn’t.
Meditation, breathing exercises as well as guided imagery help too.

Do you have a neurologist or family doctor you see regarding your TN?
Have you ever called them during a a Pain Crisis?
I have an understanding with both my doctors that I can call when I’m in a pain crisis, and they will respond within hours to suggest /try to help. Sometimes an increase in one of my anticonvulsant meds is suggested or another med is recommended to add to the current mix or a trip to ER for Dilantin infusion…

Pain medications, like narcotics have never worked for me, ever.
I’ve tried them all.

I sincerely hope your pain cycle breaks and you get some relief soon.
(( hugs )) Mimi

4

I am so sorry you are going through this... No one knows who hasn't been there. They can SAY they know, but they just don't.

It would be really helpful if you were to specify which medications you have tried, and at what doses. Then others who have tried various cocktails can interject their input with more clarity.

Also, without trash-talking any doctors or medical centers, you might mention where you've been and what their theories were about your case.

I don't mean to pry, and frankly I was one of the lucky ones for whom Carbemazepine actually worked. My idea with this advice is simply to bring you more clear input from the community.

I wish you pain-free,

Sue

5

One thing that gives me relief is peppermint oil, but only for about 10 minutes. Another is ice and heat. The best medicine I’ve found is meditation and yoga. Check out living well with pain and illness by vidyamala birch.

I’m sorry you’re so desperate. I feel it too.

6

I say all this after trying everything. I’ve had this for 16 years, since I was only 14. I’ve been to the ER. They won’t help. I’ve been everywhere. The only place that brings any true relief- anything that endures- is genuine connection to other people and things, to remind me that I am worthwhile, capable, lovable and loving. It’s doing something that I love with the pain, and still loving it. What do you love? Do it, please.

7

Thank you for posting and giving me the opportunity to respond. It’s easier than just dialoguing with myself, as I’m apt to do. I can remember the things that are good when talking to others, but it’s REALLY difficult when it’s only my voice tennising back and forth.

8

Have you seen Dr. Casey in Michigan? Are you a candidate for MVD???

9

I am so sorry to hear that you are suffering, going into the rabbit hole is so scary. great advice here on pain meds. I know how you feel about being looked at like a crazy person. Some of my posts here are a little off the wall. It’s the prerogative of the individual that had this disease. Go to the ER. There are lots of people who suffer from chronic pain. I broke down in the doctors office last week and heard cries come from me that shocked me. This is hard! Never be ashamed. Mimi and KC have great advice and are always point on. My prayers are with you all day.

10

I'm sorry you are having such a difficult time with this...I have been there many times as we all have. Have you tried a tricyclic anti-depressant?? Nortriptyline and Amitriptyline have helped me a lot. They tend to work for Atypical pain.

No pain pill or anti-inflammatory has ever helped me.

Hot compress, hot bath or hot water bottle.

Voltaren Emugel or Emla Cream helps a bit with the burning.

And sleep resets the nerve for me. Every day is different.

Lack of sleep, stress and anxiety exacerbate my pain big time.

I hope you can find some relief.

Jane