I have been taking 50mg Lyrica twice a day for 6 months for TN. Am I ever going to feel normal again? I have no energy, my balance is off (almost bumping into the wall down my hall in the house), problem staying focused on projects, problem finding the right words when talking, forgettfulness, just generally feeling stupid! I make errors when typing e mail messages and am gaining a little weight because I am eating more than I used to. My self esteem is going down. I am angry that my excellent health has hit a bump in the road & I have little control. I can only hope that the Lyrica is reducing the incidence and intensity of the TN events. Thanks for listening!
Hi, Dixie, This is a little more than a bump in the road. We all hope and pray for a permanent remission, meanwhile taking our life one day at a time. There are only so many “tolerable” side effects we can manage. It’s important to discuss your reactions to meds thouroughly with your doc as you may have to try something else. A pain diary is helpful to keep for your own remembrance of side effects from meds and a kind of tracking of the pain as it may morph into something different over time. For instance, the pain may begin with sharp, quick attacks but may change into an ongoing constant burning pain… or vice, versa. Having tn is like having infant twins with collic!! Well, only sometimes does it command that much attention. Please know that we are all here for you and completely “get” your comments and relate perfectly with the frustration. Taking care to tend to myself has been a saving grace. I’m learning to be my own best friend and really wish it had not taken a health crisis to bring out the best in me. Please msg me if you’d like to chat privately. Blessings to you! LyndaS
i know, i've had it all . you described it SO correctly (and that is what the doctors call - a medicine with "small" side effects). what doses do you take ?
i'll tell you- i had al those side effects (was on 450 mg for 6 months)
i'll have to admit - i became to a point were some day the pain was almost unnoticable ... but it' wasn't still OK .. .and wasn't "fine" . do i don't know.
my BODY felt a LOT better without those meds.
BUT
as much as i hated the meds... thinking now backwards.. that MAYBE even for the slight relief it gave + good sleep... maybe it's worth them.... .so please consider this.
if you "get off" the meds.. and stilll with the 24/7 pain... what would you do.
Thank you so much for your message. I have kept a journal since I have been dealing with TN (less than a year) so that I can recall when & where events(pain) occurred. I am on a waiting list to see a neurologist @ the Mayo Clinic in Jacksonville, Fl. I live in the Florida Keys & the neurosurgeon who diagnosed me in Miami wanted to do surgery almost right away. I refused and that is when I got on the list to see a neurologist. I realize the Lyrica I take is low dose @ only 50mg twice a day. Somehow I find it comforting to hear from someone who understands what I am coping with. Thank you.
.LyndaS said:
. Hi, Dixie, This is a little more than a bump in the road. We all hope and pray for a permanent remission, meanwhile taking our life one day at a time. There are only so many "tolerable" side effects we can manage. It's important to discuss your reactions to meds thouroughly with your doc as you may have to try something else. A pain diary is helpful to keep for your own remembrance of side effects from meds and a kind of tracking of the pain as it may morph into something different over time. For instance, the pain may begin with sharp, quick attacks but may change into an ongoing constant burning pain... or vice, versa. Having tn is like having infant twins with collic!! Well, only sometimes does it command that much attention. Please know that we are all here for you and completely "get" your comments and relate perfectly with the frustration. Taking care to tend to myself has been a saving grace. I'm learning to be my own best friend and really wish it had not taken a health crisis to bring out the best in me. Please msg me if you'd like to chat privately. Blessings to you! LyndaS
Thanks for your reply--I feel like a big baby when I read some people's problems. I shouldn't be complaining when all I am taking is 50mg. Lyrica twice a day, but yet, I do feel frustrated in so many areas & not too happy with what is going on and I seem to have little control. thank you, again.
i know, i've had it all . you described it SO correctly (and that is what the doctors call - a medicine with "small" side effects). what doses do you take ?
i'll tell you- i had al those side effects (was on 450 mg for 6 months)
i'll have to admit - i became to a point were some day the pain was almost unnoticable ... but it' wasn't still OK .. .and wasn't "fine" . do i don't know.
my BODY felt a LOT better without those meds.
BUT
as much as i hated the meds... thinking now backwards.. that MAYBE even for the slight relief it gave + good sleep... maybe it's worth them.... .so please consider this.
if you "get off" the meds.. and stilll with the 24/7 pain... what would you do.
I guess 50 mg. twice a day is a pretty low dose. Hopefully, I will see a good neurologist in a few months and perhaps my TN management will be more acceptable. Thank you so much for your reply.
Kc Dancer Kc said:
I felt very "stoned" on Lyrica and had to quit my job..... have you tried a lower dose?
no more botox unless we can find another delivery method/ air is not great at most times because it slows down release and promotes scar tissue tightening/ really trying not to waste time on dr. appointments.
is my balance off from my meds or the disorder itsself? j lost my great health to but it wouldnt mahe me dizzy or both feet numb. Do you have numbness.
When I took Lyrica I gained 7 pounds but it didn't go any further. I did have speech trouble at first, but that went away. But I did have that slowness feeling with it...
Min, thank you so much for your reply. I am aware of my short term memory problem and wonder if others notice. My significant other notices I am sure. He is supportive in every area, I must say. I do not like the fuzzy feeling I have and just generally dull, at times. It has been 17 days since I have had an "event", which is the longest I have ever gone. I am grateful for it but wonder, each time I wash my face, will it hit me today? Again, thank you for taking the time to respond. I hope you are enjoying Springtime.
Min said:
When I took Lyrica I gained 7 pounds but it didn't go any further. I did have speech trouble at first, but that went away. But I did have that slowness feeling with it...