We are patients living with Trigeminal Neuralgia, here for your support.

I Feel Good (or wish that I could)!!

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A group where we can all discuss how to feel better. How do you counteract your condition and the associated side effects of the medications we take?

Location: subject-specific group
Members: 87
Latest Activity: 3 hours ago

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Discussion Forum

Diet Change

Started by EJaenicke. Last reply by crystalv yesterday. 2 Replies 0 Likes

Hey all, I just wanted to share that a recent diet change I made has helped cut my pain exponentially! I was diagnosed a little over a year ago, I have what I think is bilateral Type I, and I am on…Continue

Personal appearance

Started by kimburlee. Last reply by Angela Filewood Feb 1. 23 Replies 0 Likes

I remenber when my Neurologist said " and no makeup". I thought, OH NO!!! I have worn makeup all my life. Well I decided that I would really take care of my skin the best way I could. It had…Continue

Personal Appearance

Started by lorraine. Last reply by booklass Jan 6. 25 Replies 0 Likes

thanks for the invite i was trying to tidy myself up yesterday after 4 days of wearing my pj so i had a shower and done my hair was inposible to put make up on my face cos i got the pain and it just…Continue

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Comment by crystalv 6 hours ago: I've been wondering if Provigil would be helpful to fight the sedating side effects of my meds. Do you like the Provigil? Does it help?

Comment by Tinkerbell 9 hours ago: Someone asked about how to minimize drowsiness other than increase caffeine intake. My doctors gave me Provigil or Nuvigil. It's basically for narcolepsy. If I have a headache, I make sure I use Bayer Back and Body because it's only aspirin plus caffeine (no acetominophin/Tylenol). Hopefully others will reply and we can see what has helped them stay awake in spite of the meds....

Comment by Tinkerbell yesterday: I've greatly minimized gluten, minimized milk products and almost cut out all meat from my diet about 3 years ago...no help so far so if it's helping somebody, that's fantastic!

Comment by Tinkerbell yesterday: Thanks, Jackie. If you send that Parcel express, I'll reimburse you! I've been doing the B12 shots for about two months now, but have seen no difference. I've followed the regimen the docs wrote of in the book (Dr. Oz's inlaws). I at least thought it would help my energy levels but ...nothing.

If you all had to pick the top 5 MVD surgeons in the country, who would they be?

Awaiting your opinions...thanks! tracyburttata@gmail.com, aka Tinkerbell aka Tracy Tata

Comment by Richard A. "Red" Lawhern yesterday: Cathi, Low B-12 doesn't cause TN. In my opinion Dr. Oz isn't qualified to comment upon or treat TN. He's trained in cardiology, not neurology, and some of his so-called "holistic" ideas border on outright quackery. Beyond that, B-12 shots were proposed for TN as far back as the 1940s, but that train of investigation was dropped after Tegretol was developed. There have never been large-scale trials, that I know of. There's a section in "Striking Back -- The Trigeminal Neuralgia Handbook", if you want to read deeper into this.

Regards, Red

Comment by Jackie yesterday: Tracy, I feel for you and your desire for some relief. I wish I could send it in a parcel to you. I love that clean, fresh feeling too!

Comment by Tinkerbell on Thursday: Yes, I'm told that if I just "fix up", I'll feel better. I do for a little while, but about 2 hours after a good shower, etc. I'm back in the bed, but all clean! Sometimes I have to blow dry my hair sitting on the floor, pain it too bad to keep me on my feet. I do put on make up about half the week because it seems to make others feel better than it does me! I do it more for them I guess because my meds make me so tired and sleepy that the energy to do it is just exhausting. But I do love nice clean hair, nice warm shower and that makes me feel good. How did you all get your pain to go away even for a couple of days? email me at tracyburttata@gmail.com or 706-207-5552

Comment by Jackie on January 29, 2012 at 4:51am: Oh Cathi, sorry life has not improved somewhat for you! It is hard for non TN/ATNers to understand, I think we have all found that at one time or another.

Do a bit of research on B12 or ask RED for his opinion. I believe there are mixed opinions on this. Take Care Jx

Comment by Cathi on January 28, 2012 at 4:25pm: Been MIA for a while....have had some good and not so good days. Even though I'm not posting a lot I try to get on a couple of times a week to read what is going on with everyone. Feel like my meds are not working as well but have a neuro appr on the 22nd, so hopefully there can be some changes made. Am starting to feel as though some of my friends think I am looking for excuses to climb into bed and not be social....it's so hard trying to make people see what's going on, sometimes that's more depressing than the pain! I guess because most people don't know what TN is they can't understand it, or really don't want to. I did hear something on dr oz this week about b12 levels being to low can trigger TN, I have been doing b12 injections for years and still have low levels...could this be the culprit? More research in that area for me! Hope everyone has a great week!

Comment by pinkbird on January 28, 2012 at 3:00pm: warm sun on your face help pain, i even use my heating pad. but with the sun gives you some color, oh and let me think; oh yeah my husband found me a heating pad for the car it plugs into the lighter, now as i get out of the house i can still have my confort of the heating pad