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Living With Facial Pain

New Canadian girl


#21

Hi New Canadian Girl, like others, I suspect rather than TN, given the description of your symptoms, that you may have geniculate neuralgia or otic glossopharyngeal neuraglia. Sorry to write in a dreadful hurry. I am a fellow horror right ear sufferer, teeth, occasionally throat sufferer - 10 years or so. Failed MVD. My MRI showed serious vascular complications, and even fixing them did them (I was under for 3 and 1/2 hours) did not fix the pain. Loads of sufferers have had success wit the various drugs mentioned here. I found the only thing to ever help the burning and stabbing and shocks in a significant way is clonazepam/paxam. Life saving. Hoping to have a more aggressive surgery in future. Happy to chat. Moreover, sorry about what’s happening to you. It’s truly distressing and devastating. Sending a hug. SFK


#22

I also have tn. What a nasty thing. I am on 1500mg of one drug and 18 mg of another. I am pain free for now and how it lasts the rest of my life. I am 58 yrs old. This disease is the worst ever and I wish you the best.


#23

Thank you and I hope you stay pain free as well.


#24

Hi again, just wanted to ask you one more question about carbamezapine. I’ve noticed lately quite a bit of hair loss, not handfuls but definitely more than usual. Is that something you’ve experienced?


#25

No, I have never noticed hair loss with this medication. I have heard that
extreme stress, like having trigeminal neuralgia can cause hair loss
though. I do not know. Blessings on you always


#26

Thanks again, I have a feeling it may be stress related. :neutral_face:


#27

Actually, carbamezapine is known for hair loss in about 10% of those who take it. You can google “carbamezapine and hair loss” and get lots of info about it.

I have hair loss on all epileptic meds but taking a prenatal vitamin helps somewhat.


#28

Thanks for the info. I shall look it up.


#29

What rash?
I might have missed something.
If you have a rash on this drug something serious might be going on.Please investigate.


#30

Hello my fellow Canuck, I am glad I read this. Yes, I also have ear pain at times. Short, painful stabs. They have gotten less for me and I hope the same for you.


#31

No unfortunately they seem to be my main source of pain these days. I get probably 20 to 30 a day. I also have some jaw pain but its nothing compared to the ear pain!


#32

I have ATN and every so often it will figure up in my ear, I have found wearing a soft ear plug helps. Maybe sound makes it worse and deadening the hearing is helping? You can get a two pack for a dollar or so at any pharmacy. I’ve seen them at the dollar store, too.


#33

Okay, thank you for the suggestion.