Hi, my name is Patricia, I'm usually on the Glutten sensitive site I'm writting for my husband. He has trigeminal neurelgy(sp) face pain. It has come about because of nerve damage in his neck. Which resulted from an injury. Anyways he has been on practically everything. He now takes TR moraphine, but when things really get out of hand, he takes clonasapan. I hate the stuff, he looks drunk. He thinks hes normal, but just looking at him it rather obviouse hes on something. I really feel for the guy, I have long term pain as well, nothing like him, thank god, but what do ya do? Is there something else he can try that nobody has thought of? They tried him on the nerontines, that was a nightmare. He lost his memerory, was a complete wreck. All I can say is thank god he has me to help him out, or I'm sure he would of had a car accident, or burned the house down, who knows what!!!! What do some of you take, if you don't mind asking. And is there any end in site with this trigenimal stuff. His face looks sometimes like he has a golf ball in there. They thought that maybe he was making stones in the salvia glands, but when he has a special x-ray for that there was nothing there. Hes had nasal surgery, not needed, root canels done, not needed, teeth pulled, and that was the weirdest, they could not freeze his mouth. So they tried to pull it anyways and in the instant that the dentist is doing this his face swelled and a infections forms immedietly. The dentist went and got the dr. (his dr was in the same office) fortunely for that, no one would of believed him if it wasn't seen by two drs. Most drs don't know much about this, think its rather rare. Is this just trigemenal neurolgy or is this maybe somethig else. I just wish that something could be done for him, its really hard to watch someone in pain and not be able to at least ease it. I also think that drugging a person so they can't function is also not the answer. Any suggestion would really help, thanks, Patricia

Hi Patricia. I have used hypnotherapy to assist in pain management. I see a pain management specialist: clinical psychologist. Of course, it isn't the only thing I use, but I'm not sure of other things such as my TENS unit helping your spouse I have heard accupunture can help. I have it on my list too! Take care! JD

Hi Patrica,
Sorry to ehar of the ehalth and pain issues, one I have battled with family and myself many, many years.
The medications and drunk look I can associate to. My family member is only 29 injured as a young teenager. The Klonpin, and some cobinations of meds...like the recent added trazadone to sleep and mood, make them really look under the influance and they think they are normal also.

We have found sometimes reducing the dose to half or less and increasing over several weeks or months has helped. Some meds, it is tolerance and as you get use to them the effecs lessen.

About the golf ball, under my jaw, in the enck I did have a stone. At first it was hard to diagx as it moved. But then would lodge and abcess. Finally in 1993 I had the worse blocage and pain. I drooled, too painful to swallow as it made more salive press in the blocked area.

You mentioned a neck injury, has you husband had pain to his arms hands, tingling, falling asleep, eye droop, Knife in the upper back feeling.
Another problem possibly, lumph nodes not draining. There are a lot of neuro and vasculkar bundles in the neck area. Behind the collar bone and in front of the first rib, is a tiny outlet all these bundles try to fit. If an injury happens and they are compreessed a lot of painfull symptoms come out.

Often there is scaring from soft tissue and nerve injury. These things do not regenerate, but die and cause grayish white mater much as adhisions to attach to nearby structures including nerves.
Also, "knots" can develope from muscle spasms to areas injured. A nerve is inflamed from injury and the muscle near it reacts by creating a protective brace or splint, creating knots of spasmsm.

one med I used was topomax, a small dsoe increased to 100 mg, to help with pain and prevent my head pains.
My family member is on Duregeisc patches after a 12 year battle of pain.
I hope that you can find a doctor to resolve many of the pain issues and this passes. Long term chronic pain is not fun nor yours wither.
A good pillow, I use a soft feathery one I can tuck up under the chin, others use a good quailty of tempupedic one.

Biofreeze rub, ice on the back of my neck, about the trap areas too.
Oh, was he in a whiplash type neck injury.
Be well,
Dianne

Hi,Thanks for the posts.
My husband injuried his neck by bashing it into a beem that holds up your house. He was in the crawl space installing a water meter and thought that he was above the hole in the floor when he stood up, unfortunatly he was not and bashed the back of his neck full force. He said he seen lights, no doubt!!! anyway it was because they took so long to even do a CT scan that nerve damage was then done. He had herniated disks which they removed and fused his neck using bone from his hip. C-5, C-6 were fused but should of been the next one up, needless to say his neck is permently straight all the vertabra have now fused. So he has no movement at all in his neck, he looks by turning his whole body. As the WCB says he has adjusted nicely to his injury. Idiots all of them. won't go there!!!!!!
He has tried the accupuncture with no success, tens same. His last specialist suggested that he try hypnotherapy. I'll suggest that again.
He was doing pretty well, till we moved to a different province, different dr, unfortuntly we live in Canada not where you want to be for good dr help. And now he has to take the generic brand of TR morphine, which he says are not the same. Try and tell a dr that. He is going for a physical on the 7 of sept and I will suggest that maybe we try the durgesiac patch, we had talked to his old dr about that and it was decided that his pain was not that bad at the time and that those where way to strong, whatta they know. Topomax, I'm going to look up that and see if it something he hasn't of has tried, I'm assuming that it a US. product and maybe not available in Canada. Any ways thanks for the help at least I can look at other options, we were able to find a dr that will at least work with him, years before, hes has this injury for 10 yrs, they all thought that he was just coming back for the drugs. Sure
Thanks again, Patricia

Hi Patricia, so sorry to hear of all you and your DH are having to go through.
I have nerve pain from damage to the S1 nerve, so my pain is across both buttocks and down both legs to the feet.
I have tried many many things over the yrs, I also did the anti-seizure meds and had no luck with them, if they helped the pain the side effects couldn't be tolerated.
Right now I'm on methadone, baclofen. and cymbalta for the pain and it seems to be the best combo I have tried so far.I'm not pain free by any means and have days that are some times worse then others but over all it works for me.
I wish you the best of luck and hope that Dh is able to find the right medication that works for him as CP is so hard to live and deal with for us and our loved ones.
LindaM

Sorry to hear about you husband. There is a Trigeminal Neuralgia board here. Me and my daughter have it. I got mine from the damage of my TMJ. No one knows why my dd has it. We have gone thru lots of meds for it though. Right now she is on dilantin. Tegretol worked best for her but her body didnt process it right. The people on the TN board are great. There is a wonderful post on there for caregivers of TN. You are right it is rare. But not unheard of. I would see a neurosurgeon or neurologist that knows something about it. Good luck. Feel free to email me if you would like.

Crystalina

Hello Patricia. When I think I have it so bad, I will think of you and your husband with a prayer. One thing worse than hurting all of the time...that is having a loved one hurting...and with unidentified problems. Just want you to know that I will be thinking of you.

sally

I didn't like the way this came out so I edited it. I applaud you coming here and trying to help your husband. I know is very hard in Canada to get to doctors and get different medications and the whole process is even slower than here.

I hope the patch works out. It made me very wired and since I do very well on morphine, maybe he will prefer the patch. It was too much for me, but everybody is very different. I just want to say that it's a long struggle to find the right combination. Topamax is probably available in Canada. There's new antiseizure drug - Lyrica and it's very sedating, so I wouldn't recommend that.

Some people take stimulants are antidepressants and hormones to deal with the sedation problem that comes from the drugs or just the chronic fatigue that often comes with chronic pain.

It's hard to find the perfect answer and just when you do things changing your looking again, but hang in there. It's too bad the generic morphine isn't working as well.

Hi, Turner,

I don't know if you may have visited the Trigeminal Neuralgia (TN) forum here that Crystalina mentioned; this is the link in case you want to check it out (again, maybe you have ):

http://forums.braintalk2.org/forumdisplay.php?f=26

A neurosurgeon diagnosed mine, and a neurologist treats.

She prescribed Relpax, which is most widely known for migraines. I hadn't heard of Relpax previously. It's rather expensive (without insurance - in the states - helping out; it would have been $85 for 6 tablets ). The medication works great for me. (While on Tegretol, I ended up in the E.R.)

At the time Relpax was prescribed for me, in 2004, I'd only seen where one other person had written about Relpax being used for TN.

I don't know if there is an end in sight - as far as the TN goes - Turner; I'd be lying if I acted as if I could predict for anyone. What I can say is: Don't lose hope!

When I wrote about my TN, and how I ended up with it, I was astonished by LisaL-TOS's reply; it really helped me think that, yes, an end in sight is totally possible:

http://forums.braintalk2.org/showthread.php?t=239


There is something that I'd never considered until speaking with my physician a couple weeks ago about some of the cranial/facial pain. Because it is so difficult to know what's what at times, I was telling my doctor about a sudden, stabbing pain I feel in my ears sometimes. I have to place the palm of my hand against it, so that it's like it's suctioning all the air out of it to make the pain go away. I was shocked when my doc told me that that pain is from my allergies! I thought, for so, long that maybe it was related to the TN. She said, nope. With congestion, it also affects tubes in the ears.


Anyway... I mostly wanted to let you know about the medication I take for TN since you asked folks if we'd mind sharing and to also wish you and your husband the best with upcoming appointments.

Hi Patricia, i too have problems with C5-6, i had a horse accident when i was young, i took 24 yrs to happen, then it went out with a bang. Im on Gabapentin at the moment for nerve pain and hope they will change this for something better. Most drs think they know but it dosnt seem like they actually listen, i have found more info here than what they tell me, but they still think its in my head. wish i could put a dr in my head just for a short time. all the best Shelley