Trigeminal Neuralgia

RobbieKCPhT · July 2012

I have Trigeminal Neuralgia. I'm really struggling to eat healthy while I have this disease. Anyone else out there who has TN that can offer any support would be much appreicated.

If you aren't familiar with TN, please Google it and read a little about it. It is horrible facial pain. Thanks for educating yourself.

roander · July 2012

Do you belong to the TNA? There's a member board where people are sharing their stories, ideas for relieving pain, etc. It's just nice to know you're not alone. I have the Atypical TN, since it's not random shocking pain, it's constant and never goes away.

Where do you hurt the most? Do you have triggers that you're aware of? I can't associate it with anything in particular, except the dentist - I dread going to the dentist!

Wish I had some advice, but it seems what works for one, doesn't help another. {{Hugs}}

RobbieKCPhT · July 2012

I'm not a TNA member, but I have been on their website & I belong to several Facebook groups, I have a lot of support from those TN friends. I know I'm not alone in the world, but at home, in my small town, I'm very alone. No one really understands it 100%. I haven't really figured out what the triggers are. My most painful areas are my right lower jaw under my teeth and then it extends towards my right eardrum. When the pain is the worst, I feel like my teeth are shattering & my ear drum is going to explode. I also dread dental work.

I used to go every 6 months for a cleaning, now its more like 1 time a year. Right now I'm just struggling with pain control. My TN is so random, it comes & goes. I was in remission for almost 2 years, and a week ago, it just came back out of nowhere. I don't take regular medications for TN, because I've tried several in the past and they never seemed to help anyway, so I just quit taking it altogether. Now I just use pain meds when I'm having episodes. This past week has been the worst. Thanks for supporting me thru this & I hope I can support you too!

tidesong · July 2012

You might ask in an MS forum as it is seen pretty frequently in MS. I'm lucky and haven't experienced it.

roander · August 2012

I am starting to think that air pressure causes me to hurt more. I am my own barometer.
Also, PMS time hurts a lot more. I usually am very tired then, so I can try to nap it off.

Mine is usually right at the left temple, down thru my cheekbone and upper jaw. My teeth throb when it's at its worst.

Facebook pages, eh? I'll have to check that out.

My doctor gave me a scrip for Vicodin which relaxes everything - I don't take it often because I have to lay down very soon after taking it, but it definitely helps.

Hope you're feeling better!

pocketpygmie · August 2012

I have a friend with TN, she hasn't mentioned diet, but I keep asking if she would ever try acupuncture. I had it when I had a migraine for over 6 months.I helped so much. If you could, just do it 3 times, that helps re train the nerves where to send messages.. I'm telling you many many years of success can't be argued with! Feel better soon!

Leslietheriot · January 2013

I am also fighting with TN. I read that a diet rich in Magnesium and lots of B vitamins seem to help. I am laying in bed right now with an ice pack on my face. I have had this for years and still don't know my triggers. I have been to several doctors and through several different medications. Nothing seems to help.

MerRock · February 2013

I know this post is a little old. I was searching the message board to see if anyone had talked about TN.

I actually had MVD surgery in September because it had gotten to the point where nothing stopped it, and it was controlling every part of my life. As I'm sure you guys know, there would be hours and hours where I couldn't talk, couldn't eat, and I would just curl up and rock back and forth.

For the longest time I would still push myself to work out. I have Fibro, so working out is essential for the rest of my body not to hurt. But the worse the TN got, the harder it was to work out. All of the extra blood moving around in my head would make the artery compress into the never even worse.

The surgery has been an absolute life saver for me. I still have a little pain off and on (generally it will be after working out) but it's night and day. When my doc went in, he found not just the artery, but a vein was also tangled up with the trunk of the nerve. I did have a "minor" complication, which was a CSF leak that took a few months to clear. But overall I am SOOO happy I had MVD. It is evasive, it's nothing to be taken lightly, but if any of you are at all a candidate, I can't being to explain how fortunate I feel to have had it. I'd be happy to answer any questions if any of you want to know anything.

Best of luck to you all. I know how awful it is, and how hard it is for people to understand what it's really like.

zymurgea · April 2015

I joined MFP in January and this is the only thread on TN. I've had it now since Oct 2008. I know how many sufferers are fighting weight gain from medication side effects or inactivity (like who wants to exercise if their face is hurting?).

I started a ketogenic diet back in the end of September. So far, I've lost over 20 pounds. I don't have to exercise, but I don't consume any sugar, starches or grains. I haven't really noticed a lot as to pain, but I do feel better and feel that at least I can control SOMETHING.

There is plenty of information of ketogenic diets both on YouTube videos and various sites on the web.

As to my TN - I have both types. Type 1 is with me all the time. I get up to 20 attacks an hour or more with pain rating as low as 2 or 3 but up to 8 - 9 when it's being a bear. I only get Type 2 symptoms when it's cold or when the weather changes (which does everywhere). So - for me this diet is the best way to go.

Because of the medications over the years, or just the wrong diet, I started developing fatty liver and problems with my gall bladder, so I'm also hoping this diet will help with those conditions as well.

Trigeminal Neuralgia

Replies

Categories