I was just wondering if ppl can reply back and let me know when the unbearable pain hits, like the kind you wanna just die and find yourself in an er. When it hits are you off your meds, or did you miss a dose? Are they random? I have had 3 bouts in 4 years with that pain, but now I am on meds and want to get off. I luckily haven't had any.
I have experienced at least three to four different types of pain, the 1st one being the worst, since I have been on my meds I haven't had "the BIG one" as for the others I can still be taking the medications and will still feel pain from time to time...(but I don't want to up the dosage)...you can go into remission for any lenght of time, I was doing good for 4 1/2 weeks and then the pain is back.
TN comes and goes with meds or without. My worst ones came when under stress and when the wind blew on my face.
I haaaaated the meds - so had MVD.
I have almost constant pain and I am on the meds, but its not the unbearable pain like before I was on. I haaattte the meds also, and def dont want to up them. But if I am in pain almost always now, I'm wondering if I should just get off. But.... I am afraid of that terrible pain that made me into a huge baby. I don't do that. I like being known for having my big girl pants on. Thank you again ya'll.
Hi Jess,
Back in march 2002 when I was first diagnosed, I spent the spring and summer adjusting my meds to get pain relief ( I have bilateral TN). By fall I was pain free for 3-4 weeks when my neuro suggested slowly weaning off the meds. I did and after another aprox 6 weeks I was off all meds and pain free.
I then experienced an 8 year remission!
This time around, not so lucky… 2010 TN1 returned, well managed on Tegretol for 2 yrs.
My TN 1 is well managed by meds, TN 2 flared this spring and it has been a struggle to get relief…since April I have had at least 4 separate days where my TN hit 10/10. Nightmare!
Most of the time because it’s TN2 my pain is constant and hovers between 1-5/10 bad days , several times it has been between 6-9/10.
Our course with TN is uniquely our own. Although we share similarities, we all experience it differently.
My neuro suggested back in 2002, that if I was pain free on meds for 3-4 weeks I should try slowly ( with his supervision ) to wean off meds.
This time around I kept trying, but withdrawing one pill, I felt the twinges and ache so would add the pill back immediately after 24hrs.
Talk to your neurologist about wanting to wean off. Who knows you may have a remission like I did, if it doesn’t work Jess, you’ll hopefully know before it gets horrid like me.
Good luck, (( hugs)) Mimi
I have made an appointment with my neuro. but I also am switching to the Jefferson Hospital to see a specialist in this field. I hope he is better then who I have now and can help me not feel I have no real options. I can't even get a real person on the other end with my neuro now and cant get a call back. His answer is always, "I don't know" or "I've never heard of that" or "We don't know enough about this condition...." Well then at least listen to me! I do. I ask for different kinds of help and they always shoot it down. Even to just switch my meds. I've had this 3 1/2 yrs. I love this website cuz most days I can just log on and read others posts and feel like its not that hopeless. Yours is one today. Thank you Mimi.
I am on 1200 mg of Tegretol and I still have pain on a daily basis, but it is manageable for the most part. I still get "bad attacks" every now and then. My last one was just over 2 weeks ago and it last for 5 hours. Unfortunately, I have to lock myself in my bedroom when these attacks hit because I have a 7 month old and a 2 year old.
If I have a stressful day at work I know I am in for it that evening! My biggest trigger is chewing so since my last "bad attack" I have stopped eating anything that makes me chew! This is the longest (since being diagnosed in Sept 2012) I have gone without a "bad attack"!
My neurosurgeon sent me to a neurolgist to add a secondary medication to take along side the Tegretol and something for the headaches I have been having. I am hoping this will FINALLY make me pain free! At least for a short time until we schedule my MVD surgery...fingers crossed...early next year!!!
I REALLY hope your pain stays away this time :)
Jess, aside from pain control our biggest asset in dealing with TN is having a doctor or Neuro who we feel listens to us and supports us. I saw 5 different neuro’s over 3 years before I found mine. It makes all the difference, you too will find yours…don’t stop until you do. They do exist.
I read your other post ( we must have been posting at the same time) I would highly advise NOT stopping your meds if you are experiencing any level of pain.
Look, I was anti-med, prior to TN I rarely took an Advil…but TN is a whole other ball game.
Without pain control, we are not able to advocate for ourselves let alone care for ourselves, or make proper decisions…pain control is first and foremost…
Keep in touch, Mimi xx
Sorry sweetheart, the answer is "yes".
For me it's the middle of the night, around 2am especially. I have missed a dose once, and I paid dearly for that, but usually it has nothing to do with that. I think pain is just worse at night, because there is nothing to distract you, no one to call, and you feel helpless (at least I do).
I actually moved a recliner into my bedroom so that when the pain is awful and I can't sleep horizontally, I can still be in my bedroom (my toddler daughter and I co-sleep).
Recently my doctor suggested that I take a stronger dose of my medication at night, since that is when my pain is worse. I tried it for the first time last night and I was pain-free for most of the night! Didn't even need the recliner.
I hope you feel better, and keep coming on this site. There is hope, and help, and nice friendly people to make you feel less alone. :)
i have bi lateral type 1 and 2 i am struggling with constant pain and break thru pain i am very consistant with my meds and i still get sharp burning electric pain that comes in waves that lasts for days. it takes everything i have not to scream. it even hurts to cry. the more i hurt the more i stress and then i hurt more. all i can say is keep communicating with your neuro and meds are hit and miss. keep trying thats all i can say. i keep switching neuros because they just dont get it. my first neuro was a life saver but i moved too faar away from her and i havent been able to find one as good since. my neurosurgeon is sending me to a neuro so im hoping that he is "the one". i am lucky because i have a good support system at home that steps up when i hurt too much to function. i have found that sometimes my TENS unit that my first neuro got for me does give added relief
Mimi said:
Hi Jess,
Back in march 2002 when I was first diagnosed, I spent the spring and summer adjusting my meds to get pain relief ( I have bilateral TN). By fall I was pain free for 3-4 weeks when my neuro suggested slowly weaning off the meds. I did and after another aprox 6 weeks I was off all meds and pain free.
I then experienced an 8 year remission!
This time around, not so lucky... 2010 TN1 returned, well managed on Tegretol for 2 yrs.
My TN 1 is well managed by meds, TN 2 flared this spring and it has been a struggle to get relief...since April I have had at least 4 separate days where my TN hit 10/10. Nightmare!
Most of the time because it's TN2 my pain is constant and hovers between 1-5/10 bad days , several times it has been between 6-9/10.
Our course with TN is uniquely our own. Although we share similarities, we all experience it differently.
My neuro suggested back in 2002, that if I was pain free on meds for 3-4 weeks I should try slowly ( with his supervision ) to wean off meds.
This time around I kept trying, but withdrawing one pill, I felt the twinges and ache so would add the pill back immediately after 24hrs.
Talk to your neurologist about wanting to wean off. Who knows you may have a remission like I did, if it doesn't work Jess, you'll hopefully know before it gets horrid like me.
Good luck, (( hugs)) Mimi
Marcy said:
Mimi said:Hi Jess,
Back in march 2002 when I was first diagnosed, I spent the spring and summer adjusting my meds to get pain relief ( I have bilateral TN). By fall I was pain free for 3-4 weeks when my neuro suggested slowly weaning off the meds. I did and after another aprox 6 weeks I was off all meds and pain free.
I then experienced an 8 year remission!
This time around, not so lucky... 2010 TN1 returned, well managed on Tegretol for 2 yrs.
My TN 1 is well managed by meds, TN 2 flared this spring and it has been a struggle to get relief...since April I have had at least 4 separate days where my TN hit 10/10. Nightmare!
Most of the time because it's TN2 my pain is constant and hovers between 1-5/10 bad days , several times it has been between 6-9/10.
Our course with TN is uniquely our own. Although we share similarities, we all experience it differently.
My neuro suggested back in 2002, that if I was pain free on meds for 3-4 weeks I should try slowly ( with his supervision ) to wean off meds.
This time around I kept trying, but withdrawing one pill, I felt the twinges and ache so would add the pill back immediately after 24hrs.
Talk to your neurologist about wanting to wean off. Who knows you may have a remission like I did, if it doesn't work Jess, you'll hopefully know before it gets horrid like me.
Good luck, (( hugs)) Mimi
Mimi those words just jumped out at me and will stay with me forever, no one has described it better.
TN is uniquely our own, Although we share similaries, we all experience it differently.
This is so true, and just like having a procedures done, I am so afraid of jumping in just because it might work for one and others that have tried it are suffering the results.
Take care.