~~trigeminal neuralgia~~

[funma]

Hi,
My name is laura and I have been in the wrong forum for a month or more. I just got recommended to come here yesterday and I find it more along the lines of what I need for support.
I was diagnosed about 3 years ago with trigeminal neuralgia by my dentist. I was in and out of the ER every week in severe pain and the doctors just pinned it on my TMJ. I went and spent all of my savings to go to OHSU (portland Or.) to the number one neurosurgeon. He reccomended I have a MVD (microvascular decompression) to aleviate the "I would rather die pain". I went through it in feb. 07 and it helped my "I would rather die pain" but here I sit left with the constant pain, called type 2 trigeminal neuralgia. I was on vicodin for over a year before my MVD and became tolerant to it, it just wouldnt work as good anymore. From there I went on every other pain med out there and none would work until I came across oxycodone. I was taking 30 mg 3 x day and it only worked for about a month until it started to wear off fast and not help the pain.
Here is where the abuse of my medication started...I started dosing myself every day to what would "help", chewing them up, crushing them, and taking more than I was suppose to.
I did this for about 8 months until my doctor got tired of it and kicked me out as a patient because I was always asking for early refills. So, there my quest began for a new doc to rx me some oxy. I found one and he did things different, he UA'ed me everytime I got the RX and about a month after rx'ing me he stopped because he found marijuana in my UA. I went for over a month in pain, withdrawling and no doctor to help.
I moved and found myself a new doctor and she rx'ed me suboxone for chronic pain. Not because she knew of my abuse but because she only rx'es it for chronic pain.
The suboxone has worked about 50-75% on my pain, the same as oxy did for me. I am taking 16 MG a day.
First of all, I wanted to ask if any of you have TN or if any of you have been rx'ed subs for chronic pain? I hope I have found a good support group! You all seem very nice.
Thanks for reading my post and I hope it didnt confuse you too much. If you have any other questions please feel free to ask me.
Thanks,
Laura

[DesertEyes]

Hello there Laura, and welcome to our corner of SoberRecovery :0

I don't have TMJ, I have autonomic neuropathy which is a different kind of neurological disease. My pain is fairly constant, mostly in my heart and stomach which are the organs most damaged by my condition. A few times a week I get a monster migraine, and once in a while my whole nervous systems acts up and I hurt _everywhere_.

The generic question for you is whether you have seen a pain specialist? What I have learned thru my own travels in the medical system is that there are three different types of medication for us pain folks. You mention only the last kind; pain killers.

There's a whole class of medications called "preventives", sometimes called "neural stabilizers". I am not a doctor, so I don't understand exactly how they work, but it's something like they lower the volume of the pain activity in the nervous system. I take one called "Depakote" and it works great for me. There's also Neurontin and Lyrica. The intensity of my pain has been greatly reduced by these meds. These kinds of meds are taken every day in order to maintain a constant level in the body. And they're not adictive, they don't give any kind of buzz or kick.

The trick to the "neural stabilizer" is that you have to start at a very low dose and _slowly_ work your way up because the primay side effect is they make you sleepy. Take too much and you'll sleep all day and all night, as I have done a couple of times.

The next class of med is called an "abortive". These are meds that stop the pain right when it is starting in order to prevent it from getting huge. Unlike the preventives, you only take them when you are getting a flare. The downside is they don't work for every condition, and the side effects can be rough.

There's one called "Maxalt" that is _wonderful_ for migraines. It works by dropping your blood pressure. Unfortunately, I have really low blood pressure to begin with so if I take one of those I will be in bed all day. Which is better than being in bed all day with a monster migraine

Because of the Depakote I very rarely need to use pain killers. When I do it's in _much_ lower amounts than I used to, the Depakote has been wonderful. In addition, my docs "rotate" the pain killers every year. Last year I was on Lortab, this year it's Tramadol. Changing every year reduces the development of tolerance, which goes a long way to preventing addiction.

I have also taken up Yoga, which I do right before bedtime. With my condition even the slightest change in the quality and length of sleep makes a huge difference in the levels of pain. I also have a massage twice a month which helps keep the blood flowing to my muscles and limbs.

I had to shop around for a good doc, most of them have no experience in pain management. Once I found a good one he explained all of the above to me. The secret to pain management is to find a "recipe" that works for your particular condition. Just one type of med is too simple, it really takes a _balance_ of the _right_ meds with the right type of physical therapy. I had to experiment with various meds until I found what works best for me.

Welcome again, Laura, I'm glad you found us. Please keep posting and we'll all toss in our personal experience so you can pick and choose what works for you.

Mike

[funma]

Hi, thanks for the response. I have been on almost every pain killer, anticonvulsant, NSAID, Antidepressant (ones used for nerve pain), ETC. and they all caused horrible side effects or just plain dont work at all.
I'm a rare case in the fact that medications just dont work or I have to take triple the amount you or the other person would take and barely have it work. My mother has the same condition.
As far as a pain doc. , yes I have been to 1 and they just recommended the same things I was already doing or to stay on the narcotics.
One thing I forgot to mention in my post is I have no Insurance and I have to pay out of pocket for doc apt.s ,meds, specialists, etc. I have a pile of doc, ER, urgent care and specialists bills.
Another problem I have is that Trigeminal neuralgia is a condition that has to do with the nerves in my face and meds dont always work to take away the pain because the mylin sheath is worn away.
Thanks for looking

[barb dwyer]

hi funma -
sorry it's taken me so long to get time to read your post.

You know-
I agree with Mike that since it's kind of a 'done deal' with pain meds for you , no matter the circumstances, maybe you can start exploring other alternative therapies.

It looks to me like your docs are suspicious already,
(or maybe that was my own impression)
whatever- they're apparently reluctant,
or is it that it's just not working?
sorry - I didn't pick up on that part.

so maybe get busy on your own?
Or have you tried alternatives?

Like osteopathy,
homeopathy,
ayreuvedic (-sp?) treatments
even chiropractic might have ideas?

[Weeza]

Hi Funma,

I also have TMJ and Temporal Manubular Jaw Disorder which was set off by two jaw surgeries and a dozen root canals plus dental implant... I also have Fibromyalgia so am prone to systemic pain, headaches, migraines, but it's quite terrible to feel electric shocks in the face when wind blows against my cheeks...

In doing research on the Internet for alternative treatments, I learned that Botox injections in the forehead can reduce headache tension, so decided to consult a plastic surgeon and went ahead with receiving Botox injections every three to four months for the passed three years and must say that I no longer experience TMJ shocks as a result of this 'cosmetic' ten minute visit.

The general cost is around $120 not covered by insurance but I end up saving more in the long run as I'm not needing to pay for expensive pain medications, plus there are no bad side effects... if anything, I've acquired a more youthful look to my face, so it's more of a benefit... It's been effective for treating my TMJ... However, be prepared for needle pokes.... that part is unpleasant but it happens so quickly that I haven't experienced discomfort for too long. I find that in going to a plastic surgeon and not a beauty spa is more the ticket since a medical expert is trained in knowing exactly where forehead muscles are, plus it's more sterile and safe.