I was just diagnosed with TN and have taken tegretol 100 mgs twice a day for the last 24 hours. My physical therapist sister would like me to try electro current. Have any of you tried electro current and has it worked for you?
Pleaseeeeee don’t. No no no. You could do more damage… MORE PAIN.
Please get the book…Striking Back by Dr Ken Casey…shows all the remedies we use and what NOT to use I think.
And if you get more pain, call the doctor, have him call you in a prescription
LIDOCAINE PATCHES for your face
This is your one stop shopping for latest and greatest info…we are rare…
You HAVE to get educated so you know what to avoid. You can get remission, come and go, but this is progressive and no cure.
Ask, learn, read, repeat!
Welcome, I’m glad you found us!
Thanks for the info KC. I found Striking Back at Amazon and will order it.
My family wants me to try alternative treatments even though the tegretol is working and I am having no side effects.
There are alternatives, with short term helps here and there…in the book! Don’t forget about face patches… It can work for up to 12 hours… I’ll try and dig up an alternative thread that was here a while back…i did reiki… Worked short term.
Here is 200 tips!,!
http://www.livingwithtn.org/forum/topics/share-your-little-helps-with
I don’t know if it’s in there, but since you are in Colorado, getting a medical marijuana card is what many here have found as a great help to keep off or lowered in their meds…not smoking, but edibles. Go research neuropathic pain…, or nerve pain with MM. There are studies written!
Start keeping a word doc, on everything you want to try whe it progresses and is worse…you will be glad you did!
Maybe you mean a nerve stimulator.It's a device that goes under your skin and delivers a pulse to the nerve.PNS i think it's called.My doctor recommended this for me and i really wish i would have tried it before my Gamma Knife procedure even though it has worked out well (so far).
It’s not something that goes under the skin. She would attach electrodes to the top of forehead and base of my skull and send a low current through them. She has treated shingles and cervical neuralgia with the electro current but has not told me her success rate. I am pain free right now except for a zap yesterday when I rubbed my forehead with a towel. I am on 100 mgs if tegretol twice a day.
I've never heard of that treatment.I would be afraid it would irritate rather than calm the nerve,especially since you are in or near remission.Good luck!
My wife tried Radiofrequency stimulation which I think is a way of giving the nerve electric shock. She tried it 3X an none helped. I think the 3rd try actually made her a lot worse. My suggestion is that try medications, chiropractic, and acupuncture before you start on procedures.
My wife had MVD surgery and gamma knife for her her atypical trigeminal pain and none helped. Treatments can damage the nerve and make you much worse.
Some doctors say that Tegretol works so well that if it don't work for you then you don't have TN.
I would suggest that you everything you can about TN (you may have already) before you seek treatment. TN is extremely difficult to diagnose and the best thing that could happen is that you don't actually have the condition.
I am so sorry for your pain and hope you respond well to treatment. However, you might want to go ahead and prepare yourself or a real long .painfull battle. Sharon, do you have type 1 or type two? God Bless
Sharon, if the meds work don't try anything more invasive.
Sharon said:
Thanks for the info KC. I found Striking Back at Amazon and will order it.
My family wants me to try alternative treatments even though the tegretol is working and I am having no side effects.
Tegretol helped me,but worked wouldn't be an accurate description.I was up to 800mgs a day and had tremendous pain at the end.In my opinion it works less as time goes on.
Greco I was diagnosed in the ER last week. From what I have read, I have type 1 TN. The pain is only in the right side if my forehead if I rub it. I have mostly had zapping pain except for when I went to the ER. That time the pain was severe and lasted for a minute. I thought I was having a stroke. The severe pain has not reoccurred so I am very fortunate.
Hi sharon--
I was diagnosed five months ago after my first attack. I had been having intermittant molar pain--thought it was a tooth problem--but when i had the severe pain-- I thought I was having a stroke, too!! The pain was so intense behind my left eye that I was sure something had exploded!! The good news is the low dose of tegretol did the trick to calm down the nerve..and after three months i went off the tegretol and have had little pain since then!! It seems remissions can be long-- some as long as many years... so I am praying for that. I freaked myself out by reading too much when i was first diagnosed. It is a nasty disease and very very difficult for some people. Some others seems to have an easier time. And there are new treatments/medications in the pipeline. I am trying to stay positive and not dwell on it...and enjoy this painfree time!!
Thanks for your comments. I hope you continue to be pain free. I have also been pain free for 5 days and think the low dose of tegretol is working. I will see my primary care doctor in a few days for follow up from my ER visit. TN is a new diagnosis for me and I hope she understands TN.