I had heard that IV steriod IV treatment for TN works for 3-4 months. Has anybody heard of this?
I take prednisone… so, maybe. Prednisone works for me. It’s the only thing that does. I take 60mg/day and tapper it as I’m able for ATN. Right now I’m maintaining on 20 mg/day.
I was told that some physicians use steroids as an initial treatment for TN with the thought that it was an auto immune disease and that an Initial quick, strong treatment would cure it. Unfortunately the Rheumatologist who told me this, and started me on a 10 day course of Prendisone, first saw me and began treatment several weeks after TN raised its nasty evil head. He said it was probably too late to help and unfortunately he was correct.
Prednisone is generally not regarded as a first-line medication in Trigeminal Neuralgia -- primarily because TN is not believed to be an inflammatory disorder.
Regards, Red
After I had MVD surgery in 2009. The nerve was so inflamed that was what I was put on. I was pain free for exactly 6 weeks. A physicians assisitant told me about her fried that passed away that had MS. The worse part of her MS was the Trigminal Neuralgia. They would give IV steriod and that would relieve the pain for about 3 months. I also was looking at Botox as an alternative but my insurance won't cover it because it is in the experimantal stages. I have had Gamma Knife and MVD and when your in such pain you look for any answer. Working out of the home at this point would be impossible. Thanks for the input.
I have not had any experience with steriod IV but I just started IVIG therapy this week. It will help boost my immune system. I get shingles/cold sores on the left side of my face that have now damaged the nerve and casue me to have TN. Now I have energy and feel so much better but I still have pain.... so I dont knwo if the IVIG will help the pain but I will keep u informed... The Iv process went smoothly if you have any questions about infusion therapy I can answer those questions for u. Laurie
The neurologist I am seeing gives me pred and lidicane (sp?) injections right under the base of my scull when I have a constant shocking-pulsing in my head. She is trying to hit the tn nerve. It helped the first time but I was in extreme pain right after. This last time it didn't do much but since then I have been very dizzy. She gave it in a slightly different spot and one thing I noticed that was different is that immediately that side of my face went numb. I was happy about that. But the dizziness and nausea, not so much. No insurance until April when my Medicare starts. I don't know if this is a side-effect of the shot or due to the stress of the holidays or what. When the base of my scull hurts so bad that I have to tip-toe because of jarring I take pred. but it's hard to get a script for it. When I finally did (1 yr ago) it helped with the pain back there ALOT! After 3 months I quit taking it because my face was swelling up. I have a few saved for emergencies.
Those injections sound interesting. I may want to try something like that. I sure dont want to have a side effect but may I ask you how long the injection gave u pain relief?
The injection didn't do much for my face but I got about 4 months for the shocks in my head. They shock with each pulse (I often call it beeping) and they are extremely painful. The pains also shoot forward out my eye. She said it was occipital neuralgia. But this last time the injection has been no help at all. My eyes ache alot too.
Thank you so much for the info Brainburn. I will consider it.My Tn sometimes feels like inflammation. Its something to consider....
What side effects have you had with the Prednisone? Thanks,
JanetM
Vicki Capone said:
I take prednisone... so, maybe. Prednisone works for me. It's the only thing that does. I take 60mg/day and tapper it as I'm able for ATN. Right now I'm maintaining on 20 mg/day.
I only had predinsone after my MVD surger. The pain came back with a vengence and and MRI was done and the TN nerve was very inflamed. I was pain free for only 6 weeks. Another question I have for anyone. Have you tried
Botox for TN. I know of 2 people that have and for one it works for about 3 - 4 months, the other 9 months. My problem is that it is so expensive and my insurance won't cover it, so I haven't tried it. In all honesty I am afraid to try anything new.
One more question have are any of you on Diability and if so was it hard to get?
Disregard in of my poor spelling.
I am on disability. I applied online and after confirming with my doctor that I have TN/ATN/atypical facial pain they approved me. You have to be on disability for 2 1/2 years before you get medicare. Mine is starting in April.
I'm actually scheduled on Feb. 28th for the facial pain injections. My pain management doctor actually targets the particular branch of the TN that is causing pain. I will let everyone know how it goes.
The facial pain injection is called Sphenopalatine Ganglion Block (SPG block). I really hope it works. I believe it can be given once a month if needed.
GoAskAlice said:
I'm actually scheduled on Feb. 28th for the facial pain injections. My pain management doctor actually targets the particular branch of the TN that is causing pain. I will let everyone know how it goes.
Lidocaine injections made my TN2 much worse. Within an hour of getting them from the first neurologist I was seeing (and then leaving) my my right-sided, non-moving headache with facial tingles and prickles turned into a 4 alarm fire on the right side of my head. The same doctor had previously had me on an oral prednisone pack, but it did nothing for me other than make me grumpy.
@Pamela Olson - I have been denied twice in the past 6 mos. Was told by the SSI/Disability "specialists" in my state that my constant headache did not occur "frequently enough" and that TN would cause discomfort, but I had two arms that worked, and two legs that worked, and I could get and keep any job that I wanted. That said, my TN got triggered once last week from going out in the cold to take my 7yr old to a party and catching an errant breeze under my scarf; combined with the fluorescent lights of the party room at the place where the birthday celebration was and built to a point over the evening that I was miserable...then out of it for the next day and a half. After recovering from that mess, I gave myself a haircut, which I always do as I don't trust others to do it anymore without hurting me, and triggered an event with the clippers where I could not touch the right side of my head for another day and a half and was miserably headache-ridden with the side of my head en fuego. Where I teaching, as I was last year at this time, I would have missed at least 3 days in one week between the two events. Discomfort though, is all the "specialists" here (that never met me personally btw) claim TN can do.
Fred
as one of the older people here, probably, (73) and having been just diagnosed after 44 years, i have been around the block, treatment-wise. both for my migraines and sinus issues, with surgeries and lots of other expensive things that didn't work. botox did nothing but make my eyelids droop for 6 months. i paid for this myself out of my skinny income, as this was about 15 years ago and before botox was approved for migraine.
prednisone "dose packs" have been used multiple times, and i could never see that they helped much for the head pain or anything else (this was before my latest bout of TN, which is infrequent, thankfully). since fibromyalgia is considered auto-immune; at least they send us to the rheumatologists for diagnosis, prednisone should help. but it is really an unknown exactly WHAT fibro is! personally, i think it's a garbage-can diagnosis, when they can't think of anything else.
when i was in the ER recently, my lovely wonderful awesome ENT came over to treat me himself. he had the nurses give me a steroid IV. all that did for me was to give me a bad cold the very next day, so i felt even worse. yes, the effect of steroids is to lower the immune system and it surely did that. also, for previous gynecological problems i have been prescribed steroid creams. i will never do that again; every time it caused either a yeast infection or a bladder infection.
this seems a good case of the treatment being worse than the disease. when i reported on the IV results to my doctor, that's when he came up with the diagnosis of ATN. he's the only doctor of the hundred i've seen over the years who put it all together. bless that man.
so no, in my long experience, steroids don't help what i have. dianne