Trigeminal Neuralgia
Posted , 4 users are following.
I got diagnosed with this 5 years ago and the pain keeps coming back. Sometimes I feel like I can't take it anymore. Anyone else understand how I feel? I have 2 kids to take care of, a job, and I'm a full time student. This horrible pain makes that very difficult sometimes. I'm on a ton of medicine that makes me feel like crap all the time. I'm considering the surgery but I'm scared. Although I would do almost anything if it meant I would be pain free. It's been in remission for several months and tonight I realized it's coming back again. It has me all out of sorts.
1 like, 12 replies
gill32586 hsisk24
Posted
Everyone on this site understands what you're going through and knows of the lack of understanding you have from others. Most people think you have 'face-ache' or that you're exaggerating. the pain. You've described your life so you're obviously young and otherwise healthy but need to ask your doctor to refer you for an immediate appointment with a neurologist. There are other treatments or even surgery which have the potential for complete recovery so don't be too distressed.
Anything you need to know just ask. We're all here to help anfd and a wealth of information. If you're in the U.k check out the FPA - Facial Pain Association. This is an excellant place to go for help.
It's a dreadful thing to cope with, especially when you have so much going on in your life.so do try to be insistant with your doc. If you've had it 5 years you should have had more medical support.
Best of luck with all this and do keep in touch, Gill
hsisk24 gill32586
Posted
I've actually been going to a neurologist for 3 of the 5 years I've had this. It annoys me how people don't understand how much pain I'm in. But then again how could they? My husband is great support. He tries to understand bles his heart. But you're right other people just don't get it. A lot of people get this mixed up with TMJ. I'm glad to have support from this site. It's nice to talk with people who have what I have. Thanks for your reply!
esther48415 hsisk24
Posted
I would suggest reading the information on this website: http://fpa-support.org/
There are a lot of people who understand what you are going through.
I found reading the quarterly journals to be very helpful. Know in advance that there are a lot of advertisements from hospitals that have treatment for TN
http://fpa-support.org/wp-content/uploads/2017/07/TNA-Quarterly-2017-Summer.pdf
hsisk24 esther48415
Posted
army183 hsisk24
Posted
I concur with Gill. Get referred to a neurology team/neurosurgeon. It's the only way forward for you (unless you've done that already). There are several medical/chemical and procedural/surgical options available to you depending on how good the clinical diagnosis is. If this proves that you do have a classical type 1 (TN1) then the outlook is rather favourable. If it's TN2 then there are lots of drug and procedural things that should be open to you.
Don't restrict yourself to the views of a GP who may be very supportive but not an expert in TN. I would even recommend that you get referred on the NHS and then accelerate things by requesting a private consultation with a top quality neurosurgeon. It's worth the 200 quid or thereabouts. Then you'll know EXACTLY the diagnosis, the options available to you and the outlook for you.
Another good place to try is the UK TN Association, just look up TNA. They have a great support line, loads of useful forum posts, several thousand members and a sound base of clinical experts who will offer advice etc. If you join them (about 25 quid I think) you get loads of relevant literature, notes, updates from their regular medical/scientific conferences and also some local support groups - not sure where you live. Are you in the U.K.?
Good luck
Cheers
Big D
hsisk24 army183
Posted
I've been with a neurologist for 3 of the 5 years I've had this. I actually met with a neurosurgeon a few months ago who is willing to operate on me. He said once the pain came back then to call him (because it ALWAYS comes back) honestly I'm not sure if this is TN1 or TN2 but I'm going to ask because now I'm interested. I'm on tegretol, gabapentin, and lyrica at the moment. Fairly high dosages. They make my hands shake and it annoys me. Actually I'm in the US. I stumbled across this site last night and figured I would join! Thanks so much for your reply!
gill32586 hsisk24
Posted
Hi There and thanks for your answer . You've obviously been trying hard to resolve this and done some research. My son always advises me to stay off google and I know what he means. It can be so scary but we do need to know all options open to us.
I don't know if your neurosurgeon is offering MVD but it does seem to be the most effective of all although probably the one you have to consider most carefully. Do get as much info as you can from him/her and write down any questions you might have well before the appt. I have a good local friend who had this op. 25 years ago and was ccompletely cured-no pain since- and if you read army/183 posts on this forum you'll find another good story, but do ask for all figures on results ( success and failure ) before you decide.
It would be wonderful if you kept in touch and let us know what you decide and, more importantly, how you are.
Wishing you the very best and praying that you will soon be out of pain
Remember that everyone on this site is cares what happens to you,
Gill
hsisk24 army183
Posted
I've been going to a neurologist for about 4 years now and just got referred to a neurosurgeon a few months ago and I've been working with him. He is great! I've never been told if I had TN1 or TN2 but from reading the difference between the two I would say my pain more so corresponds with TN1. I'm in the US actually!
connie41374 hsisk24
Posted
Hi
I do understand being so young , you that is ! I'm know it's horriable ! I'm sorry .
im dealing with it right now as I type ! I'm habpving pain with ice lick headaches and burning in my gum ear pain ect .. the list goes on . Mine is so bad that it's transferring across the the side if the top of head .
Does anything help you ?
hsisk24 connie41374
Posted
I'm so sorry that you're having so much pain. I wouldn't wish this on my worst enemy. I actually had MVD surgery on 8/22/17 and my pain is completely gone. Before surgery nothing helped me which is why I went ahead and did the surgery. I have no numbness, double vision, or vertigo. My surgery went fantastic. My only regret is I wish I had it done sooner. Is surgery an option for you? I would recommend it to anyone. No one should live with this unbearable pain constantly.
connie41374 hsisk24
Posted
Hello
I'm sad to see so many people suffering on here like me . My prayers go out to all.
Does anyone have ice pick head aches and lots if inflamation and facial puffiness ?
Along with burning in the gum and horriable ear pain ?
All I know this is horriable ! Very attack seems to come back harder and nothing really works now to stop this flare ! I have a several health issues which makes mine a lot morncomplicated ! I was in re,
missin until I had a neck fusion and that's all it took I've been in pain now for 2 yrs ! And now their saying I have a parotitus gland issue , to make it more complicated they said I have as of this July hashimotos ! Wow and the doctors in my area say they don't know what to do except shop me up the road to the nearest university .
But in the meanwhile I sit here and suffer with no medical support no help.
Sorry to complain for tonight any suggestions on the pain , or what to do ?
They have to find something for this horriable pain !
prayers to all !
hsisk24 connie41374
Posted
Are you on any kind of medication for this? I was on tegretol, gabapentin, lyrica and baclofen for mine. I really am so sorry you're having to deal with this! Mine was always in my jaw. I couldn't talk, eat, brush my teeth. It was awful. Are you a candidate for surgery?