pleeeze help - desperate

[sharralin]

Fifteen years ago, after seven years of tn, I had an acupuncture treatment that gave me a miracle-- four absolutely pain free hours. Had five kids and the guy was two hours away and eighty bucks a pop, couldn't continue the treatment but never forgot it.

Fast Forward to this year. Have had a bad ear infection, caused by MRSA staph; resistant to antibiotics, for ten months. Ear drum has ruptured several times and is now more holes than drum. Now I have developed a choecystoma, a cyst or tumor behind the ear. It has to be surgically removed before it invades the brain and I can pretty much kiss the hearing in that ear goodbye. The hearing I really don't care; it's the pain I cannot take. The last ten months have been pure ****. I am terrified of more pain from the surgery but cannot live with the pain of that thing being in there.

Last Thursday I made a BIG mistake. Had acupuncture. Dear God, he must have hit the nerve dead square on the root. Excruciating pain started in the car coming home and has not stopped. I am taking large doses of methadone and morphine, and have the fentanyl patch. Usually these do the trick. Not this week. I'm also taking ibuprofen, namenda (I have hopes) and have started Lyrica at 75 mg. twice a day.

Question: Has Lyrica helped you and how much does it take to work for you? Increasing the lyrica dose is the only thing I can think of other than jumping off the bridge. oops, I live on a small island, if I jumped off the bridge I would just get wet! haha, trying to hold on to my sense of humor.

I am at the "oh my God, oh my God, oh my God, oh my God" stage most of the time now; you KNOW what I am talking about, yes?

please, any suggestions are extremely welcome.
in agony,
cherie (sharralin)

[jenlw]

Hi Cherie, I'm Jen.
I'm sorry I haven't really got any suggestions but hang in there and you have my support. We all understand what you are going through. Have you been to see your neurologist about this?
Hang in there :)
From Jen

[baywatcher]

Oh dear, you poor thing, yet another setback. I'm hoping that some or all of those things you're trying have some effect soon - maybe someone here will have an even better idea. All I can do is send love, this is just way too awful and you will be in my thoughts, Nancy

[Fraalan]

I have 3/4 of a bottle of 100 mg lyrica here if you want it, meaning it didnt do squat for me.
Carbazimine is the only thing that knocks off 10-15% of the pain.
I am A-typical (constant pain)
And carb. possibly takes away more stingers that I know of. hopefully not so I can stop taking it soon.

good luck

[Fizzbw]

hang in there hon - you WILL find something that helps!

Lyrica helped a bit for me, but on balance I have come off all anticonvulsants prefering to rely on tramadol and fentynyl lollipops and patches when ness. Have you tried amytriptyline?

As regards the increased pain from the acupuncture - this is often the case and its probably some form of healing crisis - I know if IS awful but it might be worth talking to the therapist and maybe going back but having less done - I know it seems counter-intuitive but worse can mean getting better in the longer term, but I totally understand if this has put you off. I wish people would realise that less is more in terms of treatments for TN - too many therapists don't realise the severity of the condition in the effect it has on the body.

Take lots of care of yourself. Another one to look at a pain management couirse? I don't want to sound evengelical but it was a massive turning point for me - and yes I was fentynyled to the eyebrows before it, now I need pain relief only sporadically for the same horrendous level of pain, but there is no way I would have known that I would ever be better like this. YOu need professional help to get there though, its beyond us on our own, quite rightly.

Big hugs

Niki ***