Is Lyrica (Pregabalin) safe for "pins & needles" sensations 4 months after surgery for TN?

Mom had her 2nd balloon compression surgery in January 2015 for TN. Now she is left with "pins & needles" sensations, etc. on the right side of her face. Her doctor wants her to go on Lyrica (Pregabalin). Is it a safe med? Also, he told her she doesn't have anesthesia dolorosa (AD) since she's had surgery, which I thought she had. The doctor said to her that AD is a burning feeling. Mom doesn't have burning. But, I READ that AD is "numbness with pain" or "a nagging"; annoying feelings, which she has. Is Lyrica good for those kinds of sensations? I would rather her not have to go on this med since she is already taking Ativan daily for sleep & I think these 2 meds together would cause problems. Thank you for any info you may have!

Hi, I have MS aswell a TN and take pregabalin to dampen the pins and needles in my hand. If it wasn't for this tablet i wouldn't be able to do any of the tasks that i am able to do now. I hope that the tablets help with your pain.

Personally, I think Lyrica is the devil. IF your mom takes it, and says it helps her pins and needles, then she should continue. In my personal experience, Lyrica made things worse.

Hi - I can't answer your question about Lyrica, but I can respond to the "pins and needles" experience. I had MVD last October and I'm happy to say that it was a success. I no longer have pain, but I did have a lot of nerve sensation. It felt like the nerve was trying to heal itself. I'm still numb in my lower right jaw and cheek and occasionally experience a tingling sensation, but it is much less frequent and not as intense. I don't know if this is the same type of sensation your mom is experiencing. I wouldn't describe it as painful, rather slightly annoying. I learned to live with it and have no real complaints. If your mom can live with it for awhile, she might be happy to find that the sensations do lessen. However if she's in pain and the sensations are so annoying that they're debilitating, then I can understand your desire to help her get relief. I hope this helps.

I had a balloon decompression in 2006 after TN and it was unsuccessful and resulted in AD. I have been on my meds for TN and AD but didn't start Lyrica until 2013 for Fibromyalgia. Lyrica made me very tired, even on the lowest dosage and it only helped with my Fibro pain not my TN or AD. Lyrica has lots of side effects for many people and I found it hard to tolerate at first. One consolation is that 9 years after surgery my AD has decreased in the past year. I have been able to go off of Percocet, Trazadone, Topamax and Lyrica. I'm currently still taking Cymbalta as it helps with the TN and depression that can come from chronic pain. I wish your mother the best

Hello. After 3 MVD’s and a my nerve being cut down as far as it could so that most of my feeling is gone. I welcomed pins and needles. I have bad ones even in my incision area and I love them. It might sound strange but I would pick those over all 3 branches…constant TN. I was on lyrica and had many many side effects. I am prescribed a topical cream with lidocaine and ketamine in it to apply on my incision and wherever else i need it. I am still on a crazy amount of medicine so one less pill to anyone w TN is a great thing. Ask her neurologist about prescribing a topical for her then she can apply it whenever she needs it.

My husband has had all the treatments MVD, Gamma Knife, two balloon decompressions. He doesn’t have the shocks anymore but he has a lot of pain deep inside the eye and numbness. He asked hid dr about Lyrica and the dr said it the same as neurotic which he has taken for a long time. he keeps blue stuff in every car and takes ambien and neurotin at night to sleep. If your mother has only numbness and no pain. That is a good thing. Hope she gets better soon. Prayers

Thank you, Diana, for your good wishes & prayers for Mom! I'm very sorry your husband is still experiencing pain. To have gone through that many procedures & still have pain is terrible. But, I'm glad he doesn't have shocks anymore. My Mom had them too before her 2nd surgery. I couldn't stand to see her suffer so much! You mentioned "blue stuff" your husband keeps in his cars. Is that Lyrica? If so, why does he do that? To use when he feels pain? Also, I will share with Mom that Lyrica is like Neurontin. She used to take Neurontin before her 1st surgery & didn't like it at all. Mom started taking Lyrica last night for the 1st time, 75 mgs. No problems yet. Thank you, again, for your help! Prayers for your husband too.

Diana said:

My husband has had all the treatments MVD, Gamma Knife, two balloon decompressions. He doesn't have the shocks anymore but he has a lot of pain deep inside the eye and numbness. He asked hid dr about Lyrica and the dr said it the same as neurotic which he has taken for a long time. he keeps blue stuff in every car and takes ambien and neurotin at night to sleep. If your mother has only numbness and no pain. That is a good thing. Hope she gets better soon. Prayers



LB said:

Thank you, Diana, for your good wishes & prayers for Mom! I'm very sorry your husband is still experiencing pain. To have gone through that many procedures & still have pain is terrible. But, I'm glad he doesn't have shocks anymore. My Mom had them too before her 2nd surgery. I couldn't stand to see her suffer so much! You mentioned "blue stuff" your husband keeps in his cars. Is that Lyrica? If so, why does he do that? To use when he feels pain? Also, I will share with Mom that Lyrica is like Neurontin. She used to take Neurontin before her 1st surgery & didn't like it at all. Mom started taking Lyrica last night for the 1st time, 75 mgs. No problems yet. Thank you, again, for your help! Prayers for your husband too.

Diana said:

My husband has had all the treatments MVD, Gamma Knife, two balloon decompressions. He doesn't have the shocks anymore but he has a lot of pain deep inside the eye and numbness. He asked hid dr about Lyrica and the dr said it the same as neurotic which he has taken for a long time. he keeps blue stuff in every car and takes ambien and neurotin at night to sleep. If your mother has only numbness and no pain. That is a good thing. Hope she gets better soon. Prayers

Thank you, Jason, for your response to my question regarding my Mom. She is the one who had TN & has had 2 surgeries for it. I'm glad this med helps you so much. I told her what you said & she was very happy to hear that. Thank you so much again!

jason sankey said:

Hi, I have MS aswell a TN and take pregabalin to dampen the pins and needles in my hand. If it wasn't for this tablet i wouldn't be able to do any of the tasks that i am able to do now. I hope that the tablets help with your pain.

I had a surgery but not for TN. Anyway the operation disturbed the TN and I did have swelling, tightness, and tingling on the right side where my TN manifests. That was 4 years ago. It took a while to return to normal.

Thank you so much for your honesty! I'm sorry Lyrica made your situation worse. Mom started taking Lyrica last night, 75 mgs. So far so good, no adverse reactions. She is going to try it for a week to see if it helps. My thoughts about Lyrica have been that it is the devil, also, because there are so many side effects. And, Mom has been through it with various meds over the last 3 years. Between Tegretol & Neurontin, etc. before she had her surgeries, she has had enough. But, she is willing to try Lyrica per her neurologist because she is so disgusted with the after-effects of her 2nd surgery. They are very annoying! Thanks, again, for your information. I hope you are much better these days!

Socheezy said:

Personally, I think Lyrica is the devil. IF your mom takes it, and says it helps her pins and needles, then she should continue. In my personal experience, Lyrica made things worse.

Good luck to Mom.I had Gamma Knife 2 yrs ago in July.It seems to have caused me to have a tingling numbness that is bothersome at times.About when i start to forget about it,it pops up.But i'm so happy to be free of the TN pain,it's a great trade i'll take anyday.

I do not know if Lyrica would help the type of pain your Mom is experiencing, but Mom started out taking Lyrica for her TN and had no problem during the time she was on it.

Not sure if that helps or not?

My Mom is planning on having a rhizotomy this summer. It will be her first. I do not like hearing that your Mom is having another type of pain after her balloon procedure. I wonder why they want to do another one so soon? Would be interested to know how she tolerated the balloon? Did your Mom ever have the gamma knife treatment? I am a little fearful for my Mom to go through the balloon because she is up in age, and I fear complications. Any comforting words would be appreciated.

Thanks, Donna

That was my first med I took. I had no problems. Here in Chile, with every med u get a great little pamphlet that is very helpful. I havent been in the states in years so dont know if they give these out now or not. It seems very safe. Hope it helps her. Kim

Pago, Thank you so much for sharing your experience. That's wonderful you no longer have pain. Mom IS experiencing the same types of sensations you've had and in the same areas. And, like you too, her surgery was a success since she is no longer experiencing pain. But she had balloon compression surgery, not MVD, for the 2nd time. Her lower right jaw & cheek are still numb & she gets "pins and needles" sensations. Although, she may get tingling sensations too. Thank you for telling me the numbness and tingling are much less frequent and intense than it used to be. Maybe there are similarities between the 2 types of surgeries and that Mom's very annoying side effects of surgery will lessen more and more. It has only been 4 months since it was done. But, these side effects have been very emotionally debilitating for her. I hope it's not because it's a 2nd surgery that she's having such a bad time. Her 1st balloon compression surgery didn't cause all these intense after-effects. It was just that the pain came back intensely after 1 year so she opted to have a 2nd surgery. She started Lyrica last night for the 1st time, 75 mgs. So far so good. I wish she didn't feel the need to take Lyrica & that she could have been able to just live with it until it lessened over time. I think it will lessen like it did for you. But, she was too emotionally weary to hang on any longer without help. She was the one who wanted to take Lyrica because her doctor recommended it. I didn't want her to have to take it since she also takes Ativan for sleep (for 20 years), and I thought the 2 meds might unfavorably interact. I was hoping she could go the natural route, like maybe supplements, for her distress. Lyrica has a lot of side effects too. I feel, somehow, she jumped the gun in trying to get relief. She hasn't had any pain since her 2nd surgery, just the numbness & weird sensations. But, I'm not in her shoes of course. And, she has suffered SO much over the last few years! I really can't believe it. Once again, thank you so much, Pago, for sharing your experience. You have helped me & given me cause for hope. I'll tell her what you said. Keep feeling better and better too!

Pago said:

Hi - I can't answer your question about Lyrica, but I can respond to the "pins and needles" experience. I had MVD last October and I'm happy to say that it was a success. I no longer have pain, but I did have a lot of nerve sensation. It felt like the nerve was trying to heal itself. I'm still numb in my lower right jaw and cheek and occasionally experience a tingling sensation, but it is much less frequent and not as intense. I don't know if this is the same type of sensation your mom is experiencing. I wouldn't describe it as painful, rather slightly annoying. I learned to live with it and have no real complaints. If your mom can live with it for awhile, she might be happy to find that the sensations do lessen. However if she's in pain and the sensations are so annoying that they're debilitating, then I can understand your desire to help her get relief. I hope this helps.

Lyrica withdrawal is worse than any drug withdrawal. I think it should be taken off the market.

Hi Jane! Thanks for responding to my question about whether Lyrica is a decent drug for my Mom. She just started taking Lyrica, 75 mgs., 2 days ago after she saw her neurosurgeon. He recommended she take it. So far, she hasn't had any problems. In fact, the pins & needles sensations are gone after only 2 days on Lyrica but the numbness is still there. And, she doesn't have any obvious side effects of the drug. I hope it continues to go well. But, I still have an uncomfortable feeling about this drug, that it may not be good long term. (Oh, by the way, I noticed a note from "Donna" under your response. Is her note meant to be there for me to respond to in some way? All I know is that you, Jane, responded to my discussion. So, I don't know if Donna's question is for me or not. I'll be happy to respond to her though.) Also, it seemed to me that your Mom is doing well at this time since she is no longer on Lyrica. I hope she's feeling well. And, thanks again!

Jane said:

I do not know if Lyrica would help the type of pain your Mom is experiencing, but Mom started out taking Lyrica for her TN and had no problem during the time she was on it.

Not sure if that helps or not?

My Mom is planning on having a rhizotomy this summer. It will be her first. I do not like hearing that your Mom is having another type of pain after her balloon procedure. I wonder why they want to do another one so soon? Would be interested to know how she tolerated the balloon? Did your Mom ever have the gamma knife treatment? I am a little fearful for my Mom to go through the balloon because she is up in age, and I fear complications. Any comforting words would be appreciated.

Thanks, Donna

Thank you, cfbigsalt, for sharing your experiences, especially how you are doing much better these days. I'm sorry balloon compression was unsuccessful, resulting in AD. It's amazing to me how that 9 years after surgery your AD should finally decrease & that you could then get off 4 heavy duty drugs! It's also wonderful that you don't need Lyrica anymore for Fibromyalgia. Is the Fibromyalgia much better? I hope so. Thank you for wishing my Mom the best. I appreciate that. I'll tell her you said so & I'll tell her what you've written. I don't have a good feeling about her being on Lyrica long term, way too many side effects like you said. She said she is only trying it out for a couple weeks. So, we'll see how it goes. Thank you, again, cfbigsalt, for responding to my question. May all continue to go well with you!

cfbigsalt said:

I had a balloon decompression in 2006 after TN and it was unsuccessful and resulted in AD. I have been on my meds for TN and AD but didn't start Lyrica until 2013 for Fibromyalgia. Lyrica made me very tired, even on the lowest dosage and it only helped with my Fibro pain not my TN or AD. Lyrica has lots of side effects for many people and I found it hard to tolerate at first. One consolation is that 9 years after surgery my AD has decreased in the past year. I have been able to go off of Percocet, Trazadone, Topamax and Lyrica. I'm currently still taking Cymbalta as it helps with the TN and depression that can come from chronic pain. I wish your mother the best

Hi

I've been on 450 mg of Pregabalin (Lyrica) for about 7 years. Its a terrible drug, but it has been effective enough for me to continue to function. It took about a year to get used to it. The side effects make it a very difficult drug for anyone to take.

I asked the Specialists and doctors to get me off of it, and they said there was no other alternative for me. I tried Gabapentin in the beginning, before the Lyrica, and it wasn't effective enough. We later tried weaning me off the Pregabalin, and on to gabapentin. I never could get off the Pregablin altogether, and had multiple dangerous sleep walking episodes during this time. We stopped trying to get me off of the Pregablin and on to gabapentin because of this.

I tried lydocaine infusions, which also had negative impact leading to a seizure ((I also have a cranial Cavernous malformation - (AVM)) This was all in an effort to get off of the Pregabalin.

I'm not a doctor, but from my own experience, Pregablin is a very nasty drug with terrible side effects, but it brings me a level of comfort that allows me to function. You must stick with the prescribed dose, as your body develops a very strong and sensitive dependency. In other words, if tonight my pain is extreme, and I've already taken the prescribed dose - if I take another 150 mg (above the prescribed dose) to reduce the intensity of the pain, the pain tomorrow at the same time of day after taking all of my daily prescribed dose can also be elevated. I try very hard not to take an additional dose of Pregabalin when the pain is bad (even though I know it will make the pain more tolerable) because of this. This is a terrible drug.

Because of my experience, I would propose it would be best to avoid going to Pregabalin. If Gabapentin is strong enough to bring you a reasonable amount of relief, that would be a better option.

Pregabalin has affected my life both positively and negatively. I can't stand the drug, and want to be off of it. (100% risk of complication to perform any kind of surgery) I'm affected negatively by the side effects, daily. The truth is that it is effective for me, and I'll probably never be able to stop taking it. If you can avoid it, my advice is to do avoid it. If you can't avoid it, it could take a while to get used to it.

This is a very difficult drug to be on - If you can avoid it, my advice is to do avoid it.

Ed