Trigeminal Neuralgia Support Group

I am sorry that ANYONE has to face this MONSTER. I have had TN for 2 years. I had bilateral brain tumors, the first removed in 1/08, my other FRIEND is still here. I get the feeling of bugs crawling on my face before I get zapped. Nothing has helped thus far, I have tried almost everything there is/ Neurotin helped in the begining, but only lasted about 6 months. The only thing that helps take the edge off is pain meds. I have also had a headache everyday for 24 months,and 3 days. The pain has now gone to the other side of my face,but only in 1 region. I have not experienced remission, but pray daily that it will happen. I hope that I have not scared you with the facts, but you need to know what could happen. I don't believe that everyone has the same reactions, but they can happen. Talk to your doctor and see if they can give you something else to help on those bad days. Wishing you many pain free days.

Hi JCTomes,

Thanks for your comments. It's always good to feel heard and supported. I'm so sorry for your pain and I think of you and send you good wishes. May we all be well!

Like JCTomes I get the bug crawling sensation. I also get things like a tingling, a numb feeling in my lip/chin, pressure sensations in my cheek/ear... twinges of pain in my upper and lower jaw radiating along the gumline... these usually give me a clue that something bigger is building/coming.

For me, major physical activities are a bit of an up and downer. One reason is that one of my worst cases of TN followed a salsasize class which I had crazily thought I would try and I must say, I feel like I never got over the apparent connection between prancing around and the worst TN ever.... I do things which I consider reasonably active - I have other health problems that prevent me from being overly active anyway, but I do walk my dog as much as possible and I live in the countryside, so this sees me walking on open fields (more like hiking). One thing I have to be cautious of is getting my face cold and the wind.

When I have been successfully on Tegretol I have managed to get rid of the pain, but have still had odd sensations (completely bearable) like numbness and tingling. My doc kept me on it until I was not in pain and then after a while of not being in pain, I chose to wean off it (as over time the effect lessens). I start taking it again as soon as I get any symptoms.

I have had some remissions and I still don't fully understand why I have had another attack that has ended each of them. I think part of it with me is related to stress and when I become very stressed or very low immunity (e.g. catch a cold) I seem to have an increased likelihood that TN strikes. I think this is probably because my body is struggling to cope overall.

Everyone is different, so whether you can get this under control and become very active again is very much a personal thing. From the sounds of it you are on the right track and it seems promising that you are getting treatment early on.

Hi Vicsta,
Thanks for your response which sparked much familiarity. It feels good to be understood. I've been a bit hesitant to exert myself physically, which is hard because it's been totally my identity. But tonight's the big test. I'm going to salsa dance for fifteen minutes! If I can dance for fifteen minutes instead of my usual two hours and body build for five instead of forty-five minutes, I would feel more spirited. Keeping high spirits are my current plan. I'm taking 1100 milligrams of Tegretol, but still have the exact pulsing symptoms - little mice always running and chewing in my face - that you mentioned. I can't decide if it's best to add more milligrams and aim for absolutely zero pain, or stay where I am which is definitely livable. Oftten I forget how much pain is pulsing in my mouth and wonder why my life feels so low. It's like the boiling the frog theory, where I don't even know I'm simmering away. Like you, dog walking is daily exercise, and I'm also fortunate enough to live rurally. Anyway, thanks for your upbeat note. My very best to you.

Hi ya

Nice to hear from you. I agree that starting out at a lower intensity and for less time than normal is a good strategy. Also, perhaps start a diary and log activity, food etc and see if you can make any links between TN and those things.

With the Tegretol, you could perhaps talk to your doctor and try an increase, then if it does not rid you of the crawling sensations, you could decrease again. I prefer to be on as little as possible!

Good luck with your exercise :o) - let us know how you get on.

Finally I have found some people who have what I have it is lonely out there when you describe what is going on and no one gets it . I am do thankful I found this group I have had this for 4 yrs and today is not a good day head feels like it is pulsating ya know that weird feeling.

Hi Kevinsgirl

You're amongst friends here. We understand! :o)

So many of us seem to have the horrible sensations as well as the pain.

Vicky

Hi Vicky,
I have a lot of things going on today like crawling on the face , head feels heavy, and ears popping, I was reading about the barametric pressure sometimes when a front comes through it will effect the head.

The sensations I have been having are a little different this week it is like my head is going to blow up! Behind my ear lobes are tender. It seems as if it produces new symptoms!

I am excited to find this group for 4 yrs I have had no one to talk to about this. Janie

I too am glad to have found this group. I have felt so alone in my suffering and talking to someone who does not have it , is not the same as communicationg with a group thats on the same page. I hope and pray the best outcome for each one of you

I agree that I am thanksful to have found this support group! Everyone I talk to just doesn't understand what I go thru on a daily basis. Even my husband doesn't have a lot of sympthy for me and the shooting pain. He just doesn't understand. I've had TN for over 3 years now, and used to "complain" a lot and grab my jaw when the pain was at its worst, but now just sit quietly until it passes and deal with it. Doesn't help to complain and everyone thinks I'm negative all the time. TN SUCKS!