Today's email

1

I want to comment that I definitely have pain on both sides of my jaw, specifically. The temple and forehead pain seem to be limited to the right side however I agree with the email (below) when considering jaw pain. Level 1 & 2.

Dear members,

I am having a discussion with a medical doctor who thinks that trigeminal neuralgia on both sides of the face is extremely rare. I think he's got his facts or assumptions wrong. Thus I am asking a favor of all of our members. If you have had either type of TN pain or both, on both sides at different times or at the same time, then please visit and join our group for patients with bilateral TN. (Type I = brief volleys of sharp, jabbing, electric-shocks, Type II = deep burning, boring 24-7 aching pain). The more information you can provide, the more I'll be able to compile in a demographic study for the medical profession.
2

I also, definately have pain both sides, my neurologist tells me because its both sides it can't be TN. he now suggests i have 'ice pick' migraine.

The pains I experience range from my eyes feeling they're being gauged in or out,a hot scewer being driven in through either temple, electric shocks, jabs,being hit heavily about the head, migraine, fortunately each pain only seems to last a few seconds

i had a cerebral angiogram in May and now i also have 'floaters'.(red and white laser like dots in my peripheral vision)very distracting ,

I am taking Epilum , an epilepsy drug, for treatment, pain still breaks through and the dose keeps increasing, it does give me some relief though , the pain isn't constant now, just makes me really really tired.

i hope this helps

3

'Lola", I hope your neurologist reads up on this. Isn't it frustrating when professionals are not aware of new ways of thinking regarding their speciality? The day of my first attacks I thought it was dental pain. The dentist tried a few things. Still, I was in tears... a few hours later, I sent an email to my niece and two nephews-in-law, all doctors. Then left to try the ER. I thought it might be an intense sinus infection. SIX HOURS later,nothing... but all those docs had replied and one suggested it might be TN (though he clarified it is not his specialty and very rare). I saw my GP the next day and he knew in a minute what the ER doc could not figure out in 6 hours. Dang. Mostly on the right side, in the last 2 months it has occurred to a lesser extent on the left as well. I only take Advil. I know about floaters; my mother had them and saw lights. I get a few but nothing like yours. I hope you will have an MRI to clarify the cause. I am so sorry to hear of your multiple challenges.

4


STanabe said:

'Lola", I hope your neurologist reads up on this. Isn't it frustrating when professionals are not aware of new ways of thinking regarding their speciality? The day of my first attacks I thought it was dental pain. The dentist tried a few things. Still, I was in tears... a few hours later, I sent an email to my niece and two nephews-in-law, all doctors. Then left to try the ER. I thought it might be an intense sinus infection. SIX HOURS later,nothing... but all those docs had replied and one suggested it might be TN (though he clarified it is not his specialty and very rare). I saw my GP the next day and he knew in a minute what the ER doc could not figure out in 6 hours. Dang. Mostly on the right side, in the last 2 months it has occurred to a lesser extent on the left as well. I only take Advil. I know about floaters; my mother had them and saw lights. I get a few but nothing like yours. I hope you will have an MRI to clarify the cause. I am so sorry to hear of your multiple challenges.

Hi STanabe I have had MRI’s for an aneurysm, a doctor in the emergency dept suggested I have TN…
I can’t see how all of this pain , all of the time can be migraine , which is the latest suggestion, there are too many conflicting factors, pain killers and migraine treatment and preventative medications aren’t working