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

Hi Amynay. Thank you for sharing your thoughts about what you've been through & about Lyrica. Wow, 3 MVD's. And, you mentioned your nerve was also cut as far as it could be. I thought an MVD is placing a small sponge between the nerve & the vessel pressing against the nerve & no cutting done at all. I thought only a rhizotomy involved cutting or damaging the trigeminal nerve so it couldn't send pain signals. Although I don't have TN, I somehow understand how you feel about loving the pins & needles since you had so much pain. I'm sorry. Mom has suffered much, too, & like you, with "constant TN." A few days ago, Mom decided to start taking Lyrica, 75 mgs. at bedtime at the advice of her neurosurgeon. So far so good amazingly. I can't believe the pins & needles stopped after 1 day of taking Lyrica & they haven't returned. I don't know if that's because she also takes Ativan for sleep (for 20 years) & Lyrica might be interacting with it--maybe increasing the potency of both drugs. I don't have good feelings about her taking Lyrica long term due to the many side effects you said it has. I've read about them & they're horrible. I thank you so much for mentioning the topical cream you were prescribed. I told Mom about it & she's going to ask for a prescription. She had not yet heard of a topical. I don't know why her neurosurgeon didn't even suggest a topical before putting her on Lyrica. That seems remiss to me. She should have at least had the option of using a topical instead of immediately going on Lyrica. Thank you, Amynay, for your help! Keep feeling better!

Amynay said:

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.

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LB said:

Hi Amynay. Thank you for sharing your thoughts about what you’ve been through & about Lyrica. Wow, 3 MVD’s. And, you mentioned your nerve was also cut as far as it could be. I thought an MVD is placing a small sponge between the nerve & the vessel pressing against the nerve & no cutting done at all. I thought only a rhizotomy involved cutting or damaging the trigeminal nerve so it couldn’t send pain signals. Although I don’t have TN, I somehow understand how you feel about loving the pins & needles since you had so much pain. I’m sorry. Mom has suffered much, too, & like you, with “constant TN.” A few days ago, Mom decided to start taking Lyrica, 75 mgs. at bedtime at the advice of her neurosurgeon. So far so good amazingly. I can’t believe the pins & needles stopped after 1 day of taking Lyrica & they haven’t returned. I don’t know if that’s because she also takes Ativan for sleep (for 20 years) & Lyrica might be interacting with it–maybe increasing the potency of both drugs. I don’t have good feelings about her taking Lyrica long term due to the many side effects you said it has. I’ve read about them & they’re horrible. I thank you so much for mentioning the topical cream you were prescribed. I told Mom about it & she’s going to ask for a prescription. She had not yet heard of a topical. I don’t know why her neurosurgeon didn’t even suggest a topical before putting her on Lyrica. That seems remiss to me. She should have at least had the option of using a topical instead of immediately going on Lyrica. Thank you, Amynay, for your help! Keep feeling better!

Amynay said:

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.

I am a 64 year old female who have damage to trigeminal nerve cause by dental work 2 years ago. I was on put on Lyrica for the pain. While on these drug I had trouble seeing and driving, allot of brain fog and confusion, trouble with my balance, diarrhea, and 8 kidney infections. I took it for 13 months.
My doctor took me off in one week while taking another anti seizure drug - Trileptal. My withdrawal was long and horrific. I was out of work for 4 months.
It is now 12 months since withdrawal last June, and I am improving but not yet back to my normal self. Withdrawal symptoms: severe insomnia even with 3 sleeping pills,nausea, weakness, blurred vision.fatigue, pounding heart beat in my ear, and burning skin sensation even today. I spent out of pocket over $4,000 in medical bills. I had horrible withdrawal heachache which I would get a shot at the ER and 2 hours later back in severe pain.
20% of patients on this drug has trouble withdrawing - mostly women over 60. Some insurance companies will not pay for this drug, and I can understand. Doctor get kickbacks from this drug since is the number 1 money making drug, Some doctor will not prescribe this drug. I didn’t think I was going to make it. This is a very potent drug, and I wish I would have been warned by doctor. I wish he would have use one of the older anti-seizure drug which have been around and don’t have the reputation of this drug. I now have a new doctor.

Thank you, Pollywolly, for sharing. That's great your right side has returned to normal. I'm sorry it took a while though. You didn't mention if you took any medication to help it get back to normal. And, it appears by your response that you've never had any type of surgery for TN. If this is true, it's kind of amazing to me you didn't need it. Maybe that means your TN has never been too intense or continuous. Anyway, I hope you're feeling well & the TN is under control & not causing you any more pain if possible. Thanks again, Pollywolly, for sharing your experience with me. Take care.

Pollywolly said:

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, Don, for your good wishes for Mom! I appreciate it very much. She just started Lyrica a few days ago at the request of her neurosurgeon & the pins & needles sensations are gone already. It's pretty amazing to me. She still has numbness though. I wish she didn't have to take anything for it though. I don't have a good feeling about her taking it long term since there are so many side effects with this drug. It appears from your response that you don't take any drugs for the sensations you experience. Wow! Good for you if that's true. Going without drugs is ideal. Mom couldn't take the pins & needles sensations at all. They were driving her crazy. The numbness isn't as bad to her. But, she felt she needed chemical support for the tingling & pins & needles sensations. I hope she doesn't need it long. She's going to ask her neurosurgeon for a topical cream for it soon. We just found out that one exists through this site. Her neurosurgeon never even mentioned that there is such a thing. I don't know why. The least invasive intervention possible seems most logical. Anyway, Don, I'm glad you're pain free & it's wonderful you're so positive! Thank you for sharing your experience. May all keep going well for you!

Don said:

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 had gamma knife in 2008, then MVD in 2009 and two balloon decompression surgeries in 2013. I have all kinds of sensations on the right side of my face. I didn't think Lyrica was doing anything until I was in the hospital for major surgery. I was taken off Lyrica and believe me I preferred the Lyrica over any narcotic. I take 225 mg and a time release Ambien to help me get to sleep. It helps. It doesn't totally take any of the pain away but it backs it off to the point I can have some kind of life. It's better than nothing. Evening is the worst time of day for me because the more tired I get the harder it is to cope. I am thankful that my husband has a good job and I don't have to work out of the home. Lyrica can make you gain some weight but I'll take a little weight gain if to get a little help.

Thank you, Kimberly, for your information about Lyrica. That's great you didn't have any problems with it. A few days ago Mom was prescribed Lyrica by her neurosurgeon. And, so far so good thankfully. I don't know if Mom received a pamphlet or not about Lyrica. I'll ask her. Mom told me since she started taking Lyrica (75 mgs.) the pins & needles sensations are gone after only 3 days on the drug! But, she also takes Ativan for sleep (has for over 20 yrs.). So, maybe because she takes Lyrica & Ativan at bedtime the 2 drugs interact. That could be why the pins & needles went away so fast. When drugs interact sometimes they increase in potency. Hopefully, they are not interacting negatively also. She hasn't mentioned any side effects. So maybe everything is okay. Thank you again, Kimberly, for your helpful information! I'll tell Mom what you said & relay your good wishes to her as well. Blessings to you.


Kimberly said:

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

I have been taking Lyrica for 7 yrs , I stopped for 5 mths after MVD , but TN returned so back on it I went . Originally on 75mgs daily , now on 600 mgs & find this drug works for me ,also have fibro. & on Oxycontin for severe osteoarthritis of spine. The only side effect I have had is weight gain ( 30 kgs ) & some ankle swelling. I know some people can't tolerate Lyrica , but anything is worth a try , it also made me a bit blaise about things at times .

Hi Linda. Thank you so much for your comment to my discussion. Unfortunately, Mom went on Lyrica last week at the advice of her neurosurgeon. I wish Mom could have just been able to handle the pins & needles sensations without chemical intervention--especially Lyrica! She has not even had pain since her 2nd surgery, just the annoying sensations with numbness. But, it has only been 4 months since her 2nd surgery & maybe if she had just waited it out & used a topical cream, perhaps, it would have been much better for her. I didn't want Mom to go on this drug. I really let her know I was not happy she wanted to go on it. I knew it would have a lot of side effects. But, Mom being Mom, who is also a very strong, independent woman, didn't listen to me. I believe she is going to have problems sooner than later with this drug. But, Mom says so far so good. The pins & needles were gone after only 2 days on it but the numbness remains. Last night I went on peoplespharmacy.com & read some of the comments of people who were dealing with Lyrica withdrawal. Unbelievable! How horrible! You are absolutely right the drug should be taken off the market. And, I believe you that Lyrical withdrawal is worse than any drug withdrawal. I'm very concerned about Mom. All I can do is pray she will be okay.But, the worst part is when she will want to get off it. And, I believe she will want to eventually. I still cannot believe the comments of the people on peoplespharmacy.com! Sooooooo many people have gone through hell because of this drug. How did it pass through the FDA I wonder? Thank you again, Linda, for commenting.

Linda said:

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

My neurosurgeon told me the longer you are on this drug, the harder the withdrawal is. A doctor who research this problem said it only occurs in 20% of patient will have this problem. Hopefully she will not have problems. It has been 11 months since my last pill and I still have the burning skin sensation, however it is slowly getting better. This drug changes your brain and nerves, that is why the recovery is so long. Also, while on the drug, after a few months it does not adequately cover pain. It had to be increased. Highest I went was 300mg, then swelling started. I got off because my urologist told me I had to. Also the first month of withdrawal I went from 166 to 130 lbs.
I ended up under the care of 5 additional doctors.

Hi Linda. For some reason I didn't get your reply in my email like I did your other reply. I might have responded sooner if I had. I really appreciate you telling me what happened while you took Lyrica. What a terrible ordeal you've been through & still going through. I'm blown away. I didn't know some doctors won't even prescribe this drug. Thank you for telling me that. I think Mom's TN was caused by dental work too, & she also thinks so. Unfortunately, there seems to be no way to prove it so you can't even sue. I saw Mom today & she was driving & I was in the front seat with her. She seemed to be having trouble concentrating on the road while she was driving & moving the steering wheel back & forth kind of quick like she was having trouble steering. Her spirits were good, though, & she seemed to be a lot more energetic mentally than she has in a while. She's so happy the Lyrica is working so well for her. It has only been a week since she went on the drug & I have read other people starting to have problems with it after only 10 days. So, I'm preparing myself for what may come. Mom is very interested in trying a topical cream for her numbness, tingling & pins & needles sensations, I think, because I mentioned to her that Lyrica can also cause weight gain & she didn't like hearing that! I wish her neurosurgeon had mentioned there was a topical available to her. But, like you said, doctors get kickbacks from this drug, which I didn't know. So, no wonder they prescribe it before suggesting something else. I found out about a topical here on this site & am very thankful. Linda, I pray you get back to being you better & better every day! Also, I hope you have family & friends you can lean on. Blessings.

Linda said:

I am a 64 year old female who have damage to trigeminal nerve cause by dental work 2 years ago. I was on put on Lyrica for the pain. While on these drug I had trouble seeing and driving, allot of brain fog and confusion, trouble with my balance, diarrhea, and 8 kidney infections. I took it for 13 months.
My doctor took me off in one week while taking another anti seizure drug - Trileptal. My withdrawal was long and horrific. I was out of work for 4 months.
It is now 12 months since withdrawal last June, and I am improving but not yet back to my normal self. Withdrawal symptoms: severe insomnia even with 3 sleeping pills,nausea, weakness, blurred vision.fatigue, pounding heart beat in my ear, and burning skin sensation even today. I spent out of pocket over $4,000 in medical bills. I had horrible withdrawal heachache which I would get a shot at the ER and 2 hours later back in severe pain.
20% of patients on this drug has trouble withdrawing - mostly women over 60. Some insurance companies will not pay for this drug, and I can understand. Doctor get kickbacks from this drug since is the number 1 money making drug, Some doctor will not prescribe this drug. I didn't think I was going to make it. This is a very potent drug, and I wish I would have been warned by doctor. I wish he would have use one of the older anti-seizure drug which have been around and don't have the reputation of this drug. I now have a new doctor.

Thank you, Ed, for sharing with me some of your story & the truth about Lyrica. I appreciate it very much. I'm sorry for what you've been through because of it, especially having to deal with side effects daily. Unfortunately, Mom was just prescribed Lyrica by her neurosurgeon this past week. I pleaded with her not to get the prescription, really tried to convince her not to, but she didn't listen to me. And, it's not that she's in pain, she has no pain at all since her 2nd balloon compression surgery in January. She just has very annoying pins & needles sensations with a lot of numbness. It had driven her crazy emotionally & she just couldn't take it anymore. I recently heard on this site about a topical cream that may help her. Too bad the doctor didn't suggest it before prescribing Lyrica. It's obvious to me that a less invasive therapy is always best to try first whenever possible. But, he may get kickbacks ($) from prescribing Lyrica & is thinking of that before his patient, my one & only amazing Mom. She's gone through so much since 2013. TN is from the pit of hell! Mom was on Gabapentin before her 2nd surgery but didn't like it, lots of side effects. Although, unfortunately, she may start having side effects from Lyrica. So many people have them. I read on "peoplespharmacy.com" so many comments of people who have been on Lyrica & are now trying to get off it. I was horrified by their comments. I don't understand how Lyrica got through the FDA. You said it took a year for you to get used to it. Wow, that's a long time & you must have suffered in the process. Mom hasn't had a problem yet, amazingly to me. But it has been less than a week since she started it. Although, the pins & needles sensations were gone in 2 days after she started it! Numbness is still there though. But, I think her situation is too good to be true. I'm preparing myself for what she may tell me in the future about the side effects she may start having. Ed, I can't believe you had multiple dangerous sleep walking episodes from trying to wean off this drug. Also, I've never heard of an AVM. It sounds like it caused pain, all in an effort to try to get off Pregabalin. I'm sorry.

Anyway, I thank you, Ed, for laying it out for me. It hurts that I can't just tell Mom all you've told me. But, I believe I have to carefully choose my words with her. I don't want to stress her out by trying to help her. She knows I'm against this drug so she puts up a wall whenever I talk about it, or about my experiences on this site. She doesn't even want to join. She thinks she doesn't have enough time for it. But, I think subconsciously she's afraid of what she'll hear, that it may be too much for her. She's had a lot on her plate over the last few years, so she doesn't have a lot of emotional strength right now. Again, Ed, thank you for sharing.



Eddie said:

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

Thank you, OSUBUCKS1, for replying to my discussion about Mom. Just this past week she went on Lyrica at the advice of her neurosurgeon. I didn't want her to go on it, though, because of the side effects & withdrawal many people have problems with. I didn't know much about the drug when I started my discussion on this topic. But, I know more now. You're the 1st person who has responded to my discussion who hasn't had any problems with Lyrica. I've heard that withdrawal affects people more when they're over age 60. Mom is 77. And, she has been through a lot physically & emotionally the last 3 years, so she's not as strong & resilient as she could be. That's the main reason I'm concerned. I've read lots of comments on "peoplespharmacy.com" by people who have suffered severe withdrawals from Lyrica. Only 1 or 2 of them didn't have any problems. I believe you were very fortunate. I'm very appreciative of your response even though I'm not in favor of Lyrica. It eases my mind a bit to read what you wrote. It gives me hope for Mom. So, thank you! I have to say, Mom has been doing well on it since she started it. It hasn't even been a week since she's been on it & already the pins & needles sensations are gone! She still has numbness though. She doesn't take it for pain because since her 2nd surgery in January she has been thankfully pain-free. But, by 4 months after surgery she just couldn't handle all the weird sensations, heavy duty numbness, etc. anymore. So she resorted to the drug. So far so good with her. I pray it continues. But, I don't have good feelings about any long term use of Lyrica. Hopefully, she will be off it in about 6 months like you. Thank you, again, for sharing your positive comments. I do appreciate them & am happy for you that everything went okay.

OSUBUCKS1 said:

I was on Lyrica for six months and had no problems and didn't have an issues with withdrawal. But everyone is different.

There is hope for your mother. I had a crown on a painless chip tooth which started the problem with a new dentist. Pain continues after permanent crown for two months. I asked for an antibiotic and dentist said no just Aleeve. Actually I had an infection the whole time and nerve was nicked or damaged. . After the first of 4 root canals by a unhonest edontist, pain was excruciating and continued. I went on Lyrica which is the biggest money maker drug right now.
I did not research it. I had to take it once I got to work because I could not drive on it. The good new is that my tooth pain is almostly completely gone.
I got several diagnosis - trigeminal neuralgia type 2, left dental pain, atypical face pain, and trigeminal neuropathic pain. My new doctor- neurosurgeon at the Medical University of South Carolina, Dr. Suni Patel told me that it takes a long time for the dental nerve to heal anywhere from 3 to 5 years,
but the pain in my case will go away. I only have a few seconds of pain a couple times a month now. My nerve healed a little over 2 years from injury. He said the nerve was nicked. I do not take any meds now. I wish my old internist would have told me about capsicum creame which you can buy over the counter. Last summer when I went through withdrawal, I used this cream and it really works- applied above lip. Use gloves to apply or soap so you don’t transfer it to your eyes.
Also, I use Dynafreeze from Footsmart.com which a lot stronger than Biofreeze. She should have her B-12 level check - I took Superior Source B-12 5,000mcg under the tongue which is equal to B-12 shot. This help the nerve to heal. You can get a Rx for a stronger capsicum cream.

On Lyrica my vision got very blurred and have to get new glasses every 6 months. Ever since being on that drugs I have had severed dry eyes which I am still dealing with. The blurred vision had clear. During the withdrawal I got vitreous detachment of one eye. Family and coworker told me that I was so out of it on that drug and not myself. My sister saw and helped me this past year. She said she did not think I was going to make it, she worried a lot about me. She said she will now research every pill before she puts in her mouth. I did not research until I started withdrawal. I am furious with my old doctor. If he had only told me about the cream, I would have not gone through this ordeal for 2 years. Or he could have tried a less potent drug.
In my case I did not have any tooth pain prior to dental work. Some people have dental pain first then have dental work. I will send you later a test by neurosurgeon in Oregon which can assist you by your symptoms. His test said I had trigeminal neuropathic pain which is injury to nerve like my mine from crown infection 2 months untreated, and unecessay root canal. I tried to sue but no lawyer would take the case because it is hard to prove unless you can find a dentist to testify in your behalf - which is almost impossible. I spent over $7,000 out of pocket after federal blue cross paid for treatment the last 2 year.
My internist for the past 20 years put me on this drug, and refused to take me off even though I called and begged him four times. So I went to the second neurologist I saw during that year, and he agree to take me off.

Accupunture actually help a lot and insurance will pay for some treatment.

I was put on Trileptal the same week I withdrew from Lyrica and almost had a seizure because there was not enough Trileptal in my systems. I would advised a slow withdrawal. Doctors go by what the drug company tell them - a minimum of one week for Lyrica and you must temporary take another antiseizure med so you don’t have a seizure. Then you withdraw from that short-term drug. This is what my neurologist did. He used Trileptal for 2 months. However, even on this I still had a traumatic and horrific withdrawal from Lycrica. Many trips to ER, I saw a new internist, new cardiologist, urologist, dermatologist., new dentist, new neurologist, eye doctor, and neurosurgeon last sumner. I had MRI (2), ultrasound of kidneys, cystoscopy,
nerve conduction test, numerous eye exams, biospy of skin due to 2 different rashes during withdrawal, nuclear medicine scan of my heart, and a lot of blood work. Now I am in good health except the burning skin sensation. These problems were caused by Lyrica treatment and withdrawal. Trileptal did not help these symptoms I was suffering from Lyrica withdrawal.

There is neurosurgeon at Oregon Health and Science University (OHSU) by the name Dr. Kim Burchiel with a lot of information about trigeminal nerve pain and different classifications of this disease.
Also, try the questionare. Go to Ohsu.edu website, click the words in blue
"Facial Pain Diagnosis Tool" This test was create by Dr. Burchiel.
See results after submitting. I went to many doctors and no one until I saw Dr. Suni Patel at MUSC gave me the diagnosis of trigeminal neuropathic pain which will heal over time. I am not familiar with your mother’s symptoms, but the doctors had me convince that I had TN while other said it
was atypical face pain ( psychological or in my head.) They were wrong and cause me a lot of mental suffering.

Hi Pamela. Thank you for sharing your thoughts on my discussion. I can't believe you had 4 different procedures in 5 years. Mom had 2 balloon procedures in 3 years & I thought that was a lot! I'm very sorry you still have pain though. I pray it lessens more & more daily until you have no pain at all. You sound like a very strong person who has decided to go forward in your life despite this. I really admire you. I know what my Mom has been through, not like she knows, of course! But, I've seen her suffer non stop for 3 years. It has torn me up to have seen her suffer so much. I can't believe after all she's been through in life, & it's a lot, that she would be stricken in her golden years with something like this. I needed this support group. I had no one to lean on. Luckily I found this site, & accidentally, while researching TN for her. She doesn't want to join though, unfortunately. I'm not sure why. She says she's too busy. But, I don't think that's really it. I think she has just been too overwhelmed by her condition & doesn't have the emotional strength to read about other peoples experiences with TN & to be there for them as well.

Thank you so much, Pamela, for telling me about your experience with Lyrica. I feel a little better about it now. Her neurosurgeon put her on it about a week ago, 75 mgs. at bedtime. So far so good. And, the pins & needles sensations were gone after only 2 days on it! Numbness is still there though. I'm concerned about the weight gain aspect of it for her. She has been trying to lose weight for a while & had recently lost 10 lbs. which I was so thankful to hear. She really can't use the extra weight. I pray she doesn't have to be on it long. She is looking into using a topical cream for the sensations she has been having since her 2nd surgery in January. I don't know why the neurosurgeon didn't suggest one. Maybe he thought it wouldn't be strong enough for her symptoms. Pamela, I really appreciate the time you took to help me look on the bright side of the Lyrica. Thank you again. Many blessings to you!



Pamela Olson said:

I had gamma knife in 2008, then MVD in 2009 and two balloon decompression surgeries in 2013. I have all kinds of sensations on the right side of my face. I didn't think Lyrica was doing anything until I was in the hospital for major surgery. I was taken off Lyrica and believe me I preferred the Lyrica over any narcotic. I take 225 mg and a time release Ambien to help me get to sleep. It helps. It doesn't totally take any of the pain away but it backs it off to the point I can have some kind of life. It's better than nothing. Evening is the worst time of day for me because the more tired I get the harder it is to cope. I am thankful that my husband has a good job and I don't have to work out of the home. Lyrica can make you gain some weight but I'll take a little weight gain if to get a little help.

Linda, thank you so much for sharing your story of what you went through & also how Lyrica was the reason for so many problems! I think I'm going to forward your reply to my Mom. She needs to read this. I really appreciate you saying there's hope for my Mother. But, right now, I believe she's blindly walking straight into a hornet's nest. And, I can't even stop her! She has a mind of her own. She's a very strong, independent woman who thoroughly believes she's the Mother & I'm the daughter; that I really shouldn't be telling her how to conduct her business. So, I have to bite my tongue most of the time. She, of course, deserves the respect so I don't force any of what I've been hearing about Lyrica on her. When the time is right I open my mouth, but carefully. I thank you, too, for all the info about capsicum cream, Dynafreeze & Superior Source B-12. I told Mom recently she may be deficient in B-12, she had the symptoms, so she got a B-12 shot. She doesn't want regular B-12 shots though. I had suggested to her the use of sublingual B-12 but she didn't go for it. She doesn't want to put something under her tongue for some reason. And, it's no big deal. I told her the pills are very small & they melt very quickly. Still, she doesn't want to take it. As we age we don't absorb B-12 from food as easily so it makes sense to supplement. I've really tried to help her with the info I have. Unfortunately, I think she's going to have to suffer some more before she takes the bull by the horns. She doesn't know what she's in for. And, it hurts me so much that my hands are tied.

Linda, it was great to read your tooth pain is almost completely gone & only a couple seconds of pain a month. Any pain is terrible, but I'm glad it passes quickly. And, it was great to read the trigeminal pain will definitely, finally go away within 3-5 years. And, the fact that you're not on any meds now is great news! Thank you for sharing your good news with me. But, what you went through was really unbelievable to me. And, the fact that you can't even sue is horrible. There should be at least 1 dentist who could testify on your behalf! And, I can't understand why the first dentist couldn't tell you had an infection. And, then, the endontist doing 4 root canals & not seeing the infection is absolutely unbelievable! Just the fact that your nerve was nicked & damaged is proof that you have reason to sue & should be able to get a dentist to testify on your behalf. Also, the fact you didn't have any pain before dental work. And, the findings of the Oregon neurosurgeon is another reason why you should be able to get a dentist to testify for you. You did say you tried to sue but the lawyer wouldn't take your case. I hope you can find a lawyer who will. I really believe there's hope for you to sue. And, I can't believe you were soaked for $7,000 even after Federal Blue Cross paid. I'm really sorry. You've GOT to be able to sue! I really hope & believe you'll find the right attorney.

It was great to read you have a sister who's there for you. I believe her that you almost didn't make it with what you've been through. Your family & friends really suffered along with you. I can't believe your internist for 20 years wouldn't take you off Lyrica even when you begged him! What a blessing it must have been to find the 2nd neurologist who finally took you off it. But, I'm very sorry you had horrific withdrawals. So many doctors & so many tests while having horrific & traumatic withdrawals--even while taking Tripetal! What a relief when you found acupuncture helped!

Thank you, again, Linda for sharing the horror you've been through. I look forward to seeing that test by the Oregon neurosurgeon you said you would send. If my Mom doesn't get off Lyrica I know she's in for trouble. You've made it clear that Lyrica is very dangerous and I believe you entirely. You may have spared my Mom a horrific future with this drug by writing about your experience. I pray she receives the truth you've stated. Much peace & many blessings to you.



Linda said:

There is hope for your mother. I had a crown on a painless chip tooth which started the problem with a new dentist. Pain continues after permanent crown for two months. I asked for an antibiotic and dentist said no just Aleeve. Actually I had an infection the whole time and nerve was nicked or damaged. . After the first of 4 root canals by a unhonest edontist, pain was excruciating and continued. I went on Lyrica which is the biggest money maker drug right now.
I did not research it. I had to take it once I got to work because I could not drive on it. The good new is that my tooth pain is almostly completely gone.
I got several diagnosis - trigeminal neuralgia type 2, left dental pain, atypical face pain, and trigeminal neuropathic pain. My new doctor- neurosurgeon at the Medical University of South Carolina, Dr. Suni Patel told me that it takes a long time for the dental nerve to heal anywhere from 3 to 5 years,
but the pain in my case will go away. I only have a few seconds of pain a couple times a month now. My nerve healed a little over 2 years from injury. He said the nerve was nicked. I do not take any meds now. I wish my old internist would have told me about capsicum creame which you can buy over the counter. Last summer when I went through withdrawal, I used this cream and it really works- applied above lip. Use gloves to apply or soap so you don't transfer it to your eyes.
Also, I use Dynafreeze from Footsmart.com which a lot stronger than Biofreeze. She should have her B-12 level check - I took Superior Source B-12 5,000mcg under the tongue which is equal to B-12 shot. This help the nerve to heal. You can get a Rx for a stronger capsicum cream.

On Lyrica my vision got very blurred and have to get new glasses every 6 months. Ever since being on that drugs I have had severed dry eyes which I am still dealing with. The blurred vision had clear. During the withdrawal I got vitreous detachment of one eye. Family and coworker told me that I was so out of it on that drug and not myself. My sister saw and helped me this past year. She said she did not think I was going to make it, she worried a lot about me. She said she will now research every pill before she puts in her mouth. I did not research until I started withdrawal. I am furious with my old doctor. If he had only told me about the cream, I would have not gone through this ordeal for 2 years. Or he could have tried a less potent drug.
In my case I did not have any tooth pain prior to dental work. Some people have dental pain first then have dental work. I will send you later a test by neurosurgeon in Oregon which can assist you by your symptoms. His test said I had trigeminal neuropathic pain which is injury to nerve like my mine from crown infection 2 months untreated, and unecessay root canal. I tried to sue but no lawyer would take the case because it is hard to prove unless you can find a dentist to testify in your behalf - which is almost impossible. I spent over $7,000 out of pocket after federal blue cross paid for treatment the last 2 year.
My internist for the past 20 years put me on this drug, and refused to take me off even though I called and begged him four times. So I went to the second neurologist I saw during that year, and he agree to take me off.

Accupunture actually help a lot and insurance will pay for some treatment.

I was put on Trileptal the same week I withdrew from Lyrica and almost had a seizure because there was not enough Trileptal in my systems. I would advised a slow withdrawal. Doctors go by what the drug company tell them - a minimum of one week for Lyrica and you must temporary take another antiseizure med so you don't have a seizure. Then you withdraw from that short-term drug. This is what my neurologist did. He used Trileptal for 2 months. However, even on this I still had a traumatic and horrific withdrawal from Lycrica. Many trips to ER, I saw a new internist, new cardiologist, urologist, dermatologist., new dentist, new neurologist, eye doctor, and neurosurgeon last sumner. I had MRI (2), ultrasound of kidneys, cystoscopy,
nerve conduction test, numerous eye exams, biospy of skin due to 2 different rashes during withdrawal, nuclear medicine scan of my heart, and a lot of blood work. Now I am in good health except the burning skin sensation. These problems were caused by Lyrica treatment and withdrawal. Trileptal did not help these symptoms I was suffering from Lyrica withdrawal.

Thanks, Linda, for this great info! I can't believe some doctors even told you the pain was psychological! That's more reason for you to be able to sue also! Regarding Mom, I believe her neurosurgeon did say she has neuropathy now since her 2nd surgery. I need to educate myself on that diagnosis. Mom's symptoms before her 1st balloon compression procedure (to right side) in 2014 were shocks, also a nagging, dull type of pain. Mainly, she had the electrical type or shocks, as I've read it's also called. And, they increased in intensity & duration until she had her 1st surgery. She was pain-free for a year until it returned about as bad as it was to begin with. So, she had a 2nd balloon compression procedure in January this year. She told me they did "more" this time around. I guess they completely crushed the trigeminal nerve root. Since her 2nd surgery she hasn't had any pain thankfully. But, the other sensations were unbearable to her. She had a lot of numbness (4 months after surgery), pins & needles sensations & other very strange feelings that even move around. They've been so annoying & distracting that she just couldn't take dealing with them anymore & asked her neurosurgeon what she should do about it. Lyrica was his answer as you know. She's been on it just over a week. She doesn't have any more pins &needles (after only 2 days of using Lyrica). But, the numbness is still there. I still think Lyrica wasn't necessary. I even told her about many side effects it has; potential withdrawals. Mom has been under a lot emotionally in many ways these last few years so I think that's why she opted for it. She knew of it's anti anxiety effects too. So, I think she wanted it for that as well but didn't tell me. She even takes Ativan (for 20 years to help her sleep) & I thought the 2 drugs might interact & cause problems because of interaction. I told her I thought that too. She has started taking only half of the Ativan at night since she's on Lyrica too. I worry about withdrawals from Ativan now. Well, she's on Lyrica & I can't change it. All I can do is pray & hope she will dump the drug ASAP. Thank you so much for all your help!

Linda said:

There is neurosurgeon at Oregon Health and Science University (OHSU) by the name Dr. Kim Burchiel with a lot of information about trigeminal nerve pain and different classifications of this disease.
Also, try the questionare. Go to Ohsu.edu website, click the words in blue
"Facial Pain Diagnosis Tool" This test was create by Dr. Burchiel.
See results after submitting. I went to many doctors and no one until I saw Dr. Suni Patel at MUSC gave me the diagnosis of trigeminal neuropathic pain which will heal over time. I am not familiar with your mother's symptoms, but the doctors had me convince that I had TN while other said it
was atypical face pain ( psychological or in my head.) They were wrong and cause me a lot of mental suffering.

Thank you, Lyn, for sharing your experience with Lyrica with me. It's quite amazing you were able to completely stop Lyrica, apparently without withdrawals, for 5 months after MVD. I've read that people usually have to taper off slowly. I was sorry to read that the TN returned though. And, I guess a tolerance for Lyrica can develop since you started with 75 mgs & are now on 600 mgs. I was very glad to read it has worked for you though. Mom started taking Lyrica (75 mgs) just over a week ago at the advice of her neurosurgeon. She couldn't take the strange sensations & numbness anymore since her 2nd surgery in January (2015). Amazingly, the pins & needles sensations were gone after only 2 days on Lyrica. But, the numbness is still there yet. You said Lyrica made you a bit "blaise" about things sometimes. I suppose that means you didn't care that much about certain things going on around you; that you weren't as emotional about things. I suppose that could be considered a drawback to Lyrica, especially if you're blaise when you can't afford to be, like if something important is going on that you need to pay attention to & take seriously. That's an interesting observation you've made of the drug. But, I'm glad you've had success with it, though not without side effects. But I believe they could be much worse as you indicated. Thank you again so much, Lyn, for sharing. I hope you're healing better & better! Be well!

Lyn said:

I have been taking Lyrica for 7 yrs , I stopped for 5 mths after MVD , but TN returned so back on it I went . Originally on 75mgs daily , now on 600 mgs & find this drug works for me ,also have fibro. & on Oxycontin for severe osteoarthritis of spine. The only side effect I have had is weight gain ( 30 kgs ) & some ankle swelling. I know some people can't tolerate Lyrica , but anything is worth a try , it also made me a bit blaise about things at times .

Thank you, Linda, for sharing more with me regarding your experience. I really appreciate it! I pray Mom doesn't have problems & that she can get off Lyrica as soon as possible. I'm really sorry you have burning sensations on your skin & still have them after all this time. That's horrible! But I'm very happy to hear it's slowly getting better. I pray it just finally stops & soon! It must really wear on your patience too.

I've been reading how a tolerance develops to Lyrica unfortunately. That's a big concern for me regarding Mom. You said it was only after a few months of taking it when you had to increase it. After only a few months of taking it is far too soon to have to increase it, I believe. Thank you again, Linda, for your extremely helpful information. It has helped me so much to vent too. Thank you for "listening." I've had nowhere to turn & have been so stressed out about Mom. I found this support group accidentally while researching TN for Mom. It was a Godsend. Be well.


Linda said:

My neurosurgeon told me the longer you are on this drug, the harder the withdrawal is. A doctor who research this problem said it only occurs in 20% of patient will have this problem. Hopefully she will not have problems. It has been 11 months since my last pill and I still have the burning skin sensation, however it is slowly getting better. This drug changes your brain and nerves, that is why the recovery is so long. Also, while on the drug, after a few months it does not adequately cover pain. It had to be increased. Highest I went was 300mg, then swelling started. I got off because my urologist told me I had to. Also the first month of withdrawal I went from 166 to 130 lbs.
I ended up under the care of 5 additional doctors.