Does anyone else here suffer from trigeminal neuralgia ??

[juggaboo]

I just found out on thursday that that is what I have and I am lookin for other people that suffer from it , I need to know how other people deal with the pain or the side effects from the drugs . I have four kids and it makes it so hard to take care of them . Either I am in so much pain that I cn barely move or the side effects from the drugs are so bad I can barely walk and feel like a total spaz . :(

[bribella]

I don't have it , I just wanted to send you some {{{{HUGS}}}} and I hope things get better for you soon.

[juggaboo]

thanks you bribella *hugs* :)

[juggaboo]

or if anyone knows of any support groups online that would be very helpful , I have searched but no luck :)

[Army-Mom]

I sent you a pm with some links to some support forums..
hugs and prayers,
Marcia

[juggaboo]

thank you army mom :D I will keep your son and family in my prayers my bil just came home from iraq about a month ago I hope your son makes it back to you soon as well :)

[joey74]

My sister was diagnosed with it last year. It took a long time to figure it out, ton's of doctors, weeks in the hospital, and countless tests. At one point they thought it was M.S. , because the onset is very similar. Anyway, her's has been controled by medication. In fact I can only remember two times that she has had pain from it(and I think it had something to do with going to the dentist!). Of course, she takes 4 or 5 different pills five times a day!
When she first found out she visited a lot of online support groups, but they were not very helpful. They ended up scaring her more than anything (not to mention most of the people had extreme cases that could not be controled by medication)
Are you on medication? If you would like I could find out what she is taking- perhaps you could could take the list to your doctor.
Good luck, I hope it all works out :)

[juggaboo]

thanks for the reply joey , so far they only have me on one medication , it seems to be helping a little I went two days without pain :D but then last night it got bad again and I had to go to the er again to get another shot of morphine and even then that just barely took the edge off the pain :( . I think my kids make it harder than anything because I can't play with them like I use to . My oldest son will be 9 in Nov. & said he wishes he was a genious so he could invent a nerve zapping machine to make me better lol that about brought me to tears . I just hope I get to be one of the ones that can either beat it or atleast control it . Thanks again for the reply & I would be interested in knowing what meds. they have your sister on :)

[advocate]

I used to work in a pain management clinic and we treated this in the clinic with trigger point injections into the nerve, so your son is correct in his method of treatment. If you can get a referral to a pain management specialist that would really be helpful for you, there are a lot of things they can do for this now, not just daily meds. Most patients get a lot of relief.

[juggaboo]

thanks advocate I will make sure and check into that , I was hopefull on these meds I had three days of almost no pain and now it's flaring up again severly , I was in the er last night to get shots to relive some of the pain and I am going to have to go in again today :( I don't know how I am suposse to deal with this , the pain gets so bad that I can not see straight and I have four lil ones to take care of , I just want the pain gone :(