[Quandry]

What different ways do you manage pain?

I was on a six hour drive one day and at least I was a passenger, but the pain became unbearable. Normally I rub capsaicin cream on my face and it works but not this time. We were out in the middle of the desert and there were no emergency hospitals or anything so I had to bear it. My daughter, who was driving, stopped at several convenience stores to find some jalapenos, something I use when the pain is out of control, but no convenient stores carried jalapenos. Finally less than an hour from home she found a Subway and asked for some jalapenos, but that wasn't working all that well. I usually chomp down on the jalapenos to release the capsaicin but these were really mild jalapenos. When we arrived home I put some hotter jalapenos in my mouth which worked better but didn't get rid of all the pain. I used ice water to numb the inside of my mouth and that helped a lot, but I had to keep my mouth iced all the time.


Today I started having pain again and once I get a jolt the jolts escalate into increasing pain that if I don't control immediately avalanches into unbearable pain.

So today I made a tea out of cloves and jalapenos, and in the mean time my pain was growing. When the tea was done I swished it around my mouth but the pain wasn't going away. I numbed the area a bit but the overall pain was intensifying. So then I rubbed capsaicin on my face that helped level it off a bit for a minute or two.

Then I took some eucalyptus oil and rubbed it over the jaw where I put the capsaicin and I'm not sure why but the pain started lessening. I'm still getting some jolts but they're not too intense and I can handle it with ice water and the tea. The pain is very dull now and its not too often that I can reverse the intensity.

Now I have to make sure to bring all these ingredients with me on any road trips because it really sucks being out in the middle of nowhere with this kind of pain.

[Quandry]

Well the pain got out of hand again. So I took a hydrocodone, but I don't like taking that med. It doesn't get rid of the pain completely and makes me feel grumpy. I'd rather find something natural to relieve pain.

[Vowel Lady]

I use a daily compounded cream 4-5 x each day. When I'm in the car for long periods of time, I take it with me and use it five times. I make sure the following day, if possible, is an easy one, because its usually not very pleasant. I have pain medication I can take if absolutely necessesary. Long drives do flair my pain. I haven't flown in an airplane since this happened. Does the pain tend to flare in planes too?

[Quandry]

Originally Posted by Vowel Lady

I use a daily compounded cream 4-5 x each day. When I'm in the car for long periods of time, I take it with me and use it five times. I make sure the following day, if possible, is an easy one, because its usually not very pleasant. I have pain medication I can take if absolutely necessesary. Long drives do flair my pain. I haven't flown in an airplane since this happened. Does the pain tend to flare in planes too?

I haven't flown in a plane in many years so it's hard to say if it would bother me or not. I'm now on Trileptol, but it's causing me some issues. I have something called Myasthenia Gravis too and the medicine is making my muscles very weak right now. I guess I need to talk to my doctor to find the right medication. This med is also making me swell and I am having coordination problems.

[shindig]

Originally Posted by Vowel Lady

I use a daily compounded cream 4-5 x each day. When I'm in the car for long periods of time, I take it with me and use it five times. I make sure the following day, if possible, is an easy one, because its usually not very pleasant. I have pain medication I can take if absolutely necessesary. Long drives do flair my pain. I haven't flown in an airplane since this happened. Does the pain tend to flare in planes too?

Car rides cause my face to flair up considerably.

I was taking oxycontin 2x 20mg/day for a year but just had the doctor kick me off them. Withdrawal sucks and lasts a lot longer than I expected (multiple weeks long).

It's pretty frustrating when doctors get you on the drugs then don't give a **** about weening you off. I can totally see how people go to heroin from oxycontin.

I honestly didn't have a bad time with the oxycontin, I worked as a programmer while I was on it, I never craved it, even during withdrawal.

I take 150mg nortriptyline, 150mg effexor, 60mg cymbalta I've only had results from the antidepressants and opiates, but not much relief. Gabapentin was terrible, trileptal didn't do anything, muscle relaxers never helped, etc

[Quandry]

Originally Posted by shindig

Car rides cause my face to flair up considerably.

I was taking oxycontin 2x 20mg/day for a year but just had the doctor kick me off them. Withdrawal sucks and lasts a lot longer than I expected (multiple weeks long).

It's pretty frustrating when doctors get you on the drugs then don't give a **** about weening you off. I can totally see how people go to heroin from oxycontin.

I honestly didn't have a bad time with the oxycontin, I worked as a programmer while I was on it, I never craved it, even during withdrawal.

I take 150mg nortriptyline, 150mg effexor, 60mg cymbalta I've only had results from the antidepressants and opiates, but not much relief. Gabapentin was terrible, trileptal didn't do anything, muscle relaxers never helped, etc

The med that I was on was actually Tegretol not Trileptol. I guess the med also caused me some confusion. The Neurologist took me off the Tegretol because of the muscle weakness and placed me on Dilantin. I have had what I think is a migraine aura. flashing lights at my peripheral vision shaped like part of a circle. It happened twice but I'm not sure if it was because of the transition from Tegretol to Dilantin. Things look a bit fuzzy right now and I feel a bit hyperactive on Dilantin, the latter being alright with me. My sinuses are acting up since on Dilantin also.

For the pain Dilantin only vaguely gets rid of pain so I tried taking baclofen with it and the pain goes away completely. If the combination works to relieve pain, then I wonder if the risks are worth it. Baclofen alone dulled the pain quite a bit and I only took it as needed and the pain was bearable; however, the pain on Dilantin alone was not bearable.

[Vowel Lady]

Trileptal did nothing for me. Lyrica helped, but the side effects were awful. Same with other meds.

Don't hesitate to talk with your doctor about my treatment. My compounding pharmacist says it is VERY successful, especially for TN 2.

1. Take Elavil or a medication like it by mouth. I take a small dosage.
2. Ask the neurologist to write a special prescription for a compounding cream. The doctor might have to talk with a compounding pharmacist to figure out the dosages. The cream should have in it: Gabapentin, Lidocaine and Capsaicin.
Rub the cream where the pain is several times a day.

It might take about ten days before it really starts working. I also felt a little nauseas the first few days.

My doc also gives me a small amount of a strong medication to take only as needed for flares.

I sometimes have to take one after long drives. I also can get into trouble with cold wind.

This has greatly helped me!!!!!!!!!!!!!!!!! If nothing has worked for you, PLEASE consider asking your doctor about this treatment.