as some may know i was on tegretol and pain free up til a few weeks ago when side effects caused me to change to gabapentin, so obviously i felt pain in the transition and still now while i work up the dose of gabapentin,
my problem is that since the pain has come back ive started feeling pain on my right side in the same area i get pain on my left (left side is where my TN started) at first i thought i was being paranoid and though it may be from just brushing my teeth or eating so i stopped both for about half a day and low and behold it started :( and it was the same sensation as the left, although is it far milder it is there and i assume it will get worse like the left side has over the past 4 months,
is this bad? what do i do :( ? does anyone else have this and one side is more painful than the other? so far i have had no severe attacks on the right just dull aches
I have had the same experience. It is much milder breakthrough pain and it is much less often. I am fairly new to TN (5 months) so I would like to have this answered from more experienced TN sufferers.
I'm supposed I'm the more experienced (?) :-/ been having it for 3 years but just joined here.
Mine is bilateral; started on the right...3 months later - the left went at it too.
From my experience, the 2nd half could be the more painful side at times, like when I had my left side went awry for 4 months. And all the while, the right one was just quit troubling me altogether.
BUT the thing is, it always changes - it is TN after all so.. yeah
Hi Haly22, glad i could draw you in :D !! My neurologist is a big pain in my bottom too!! she didnt even think i had TN because i got dull ache pains as well as the typical sharp severe pains, shes still running along the TMJ route, even though i dont get pain in that area, thankfully i have a very understanding GP who still allows me to have TN meds or i prolly wouldnt be here!! Unfortunately i cant fire my neuro coz im in the UK under the NHS we just get sent to Dr's with no choice really.
Hi ladies. :). I also started with my on just one side and now have it on both. The pain on the original side (my left side) is sharper and more stabbing and the pain on the right is more of a burning pain. Do any of you feel like your head is in a vice? I get a tight burning feeling on the top of my head and around my jaw line. Fun stuff, huh? Lol.
mine was gone with Tegretol but i had to come off it because of side effects :( ! now i have to find something else, so far Gaba aint working too great, off to docs on weds to increase dose :(
Yes, that's how mine feels, like I have a brick pressing down on the top of my head and a vice on both sides. I also get the burning on spots that move around my head. Am currently trying Trileptal to see if that works.
Vicki Dvorak said:
Hi ladies. :). I also started with my on just one side and now have it on both. The pain on the original side (my left side) is sharper and more stabbing and the pain on the right is more of a burning pain. Do any of you feel like your head is in a vice? I get a tight burning feeling on the top of my head and around my jaw line. Fun stuff, huh? Lol.
When mine started, it felt like an elephant was standing on my cheek, just too much pressure - calling it 'pressure' is an understatement.
So I called it 'the elephant' hah :-P
Sure I can sort of mock it NOW but really i was miserable.
Are you ladies having any luck with Tegretol?
I've yet to try it. Since the last time I'm trying to switch from Gabapentine to Trileptal but turns out I'm allergic to it so I'm afraid to try other drugs again.
I'm still new to TN (just 4 months now) and this week, mine switched and decided to become bilateral. I knew because the pain and the nerve twitches were exactly the same. So weird. I'm so sick of this already and it's only 4 months. I can't imagine how you all have dealt with it for so long. I don't do well with the meds either. It's awful. Collette, my heart breaks for you. It sucks.
Hi, I have bilateral TN, I can only speak from my own experience; my TN started on right side many years ago lasted for 8 months then I was in remission for many years. When it came back again it also started on right side for 2 yrs, this past month and a half it has moved to left side and I have had to increase from 800mg of Tegretol cr to 1600mg. When I felt it on left side it started out as a dull breakthrough achiness but slowly it has become full on TN pain. I have never had the pain on both sides at once.
Because bilateral TN is rare according to doctors & neurologists they may insinuate you don’t have TN , my neuro knows me and although he acknowledges it’s rare he is working with me to increase the meds (find pain relief) and has scheduled another MRI ( my last one was 2 yrs ago).
I have learned with TN to never assume anything… The most important thing is relief of pain and ability to function. Keep track in a journal so you can bring up concerns with your doctors.
Take care of you,