Tapering off Lyrica gave me panic, nausea, extreme anxiety

Posted by cdcc @cdcc, Nov 28, 2017

I have been taking Lyrica 150 mg two times a day for four years for trigeminal nerve neuralgia from shingles. Since I am now beginning to loose my teeth from this medication I decided to go off it. Folding my doctors withdrawal program I became very sick. Panic, extreme anxiety, nausea, could not eat and lost 17 pounds in 7 weeks, not good I’m tiny as it is. Ended in the ER for I’ve fluids, nausea medications. Back to the family doctor. He put me back on 50mg a day because he felt I needed a long withdrawal from the medications then also said you may have to go back on your full dosing which after all this suffering I am doing I don’t want to do that. I have even made an appoint with a psychiatrist to help with the anxiety although my family doctor gave me Ativan 0:5mg to take twice daily. I don’t even wan5 to go outside the house, haven’t driven in 7 weeks afraid my anxiety or panic will take over. Has anyone experienced these conditions with coming off this medication. Thank you

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@cdcc

Woke this morning with the shakes again. Took an 0.5 mg Ativan hopefully it will kick in soon. One day I’m good next day blah! Going on 8 weeks of this crap now and with the holidays coming I’m wondering if I’ll feel any better by then. Still not liking to go out of the house, I get really light headed when I get out of the car and it takes a few minutes to settle down. Haven’t driven or gone anywhere by myself in weeks. And I’m 66 years years old I don’t need this crap at my age,

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I see your post is from 2017. Im trying to taper off of Lyrica, with my doctor's advice. I wonder if you succeeded on getting off of the Lyrica and if so, how long it took>

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I have never taken Lyrica but did take Gabapentin for a short period of time and could not tolerate it. Doctors always recommend Gabapentin to me for everything and I refuse. Anyway, I would like to caution you on starting the Ativan. It is very hard to get off of. I went cold turkey from .05 one time per day, it almost ruined my life. I had to find a doctor that understood this drug. I could not sleep for days, lost 30 pounds in two months and was so anxious I could not leave my home. The doctor reinstated me on the drug and when I got stable I started a slow taper. I have been tapering for almost a year now and will be finished in March. Just warning you about trading one drug for another that is hard to get off from. Good luck.

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@swansong777

I have read that Clonidine is given to patients that are in rehab and withdrawing. Perhaps that could help.

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Please be careful starting on Benzos. They can not be stopped abruptly and you will have another drug you have to taper and most doctors don't know how to tell you to do that, believe me I was in a living hell from stopping Benzos without tapering.

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@pmacg88

I was on Lyrica for at least 8 years...I started at 50 mg three times a day. I remember leaving the doctor's office and his nurse, Phyllis, walked out with me. She told me to not read the drug side effects because it might change how I reacted to the Lyrica. Little did I know how hard it would be to go off. Through the years I was able to eliminate the mid-day dose. I tried to taper myself in October2023 and wound up in the ER with hypertension, extreme shakiness and dehydrated. Now, I am working with my doctor to taper off. I started at 50 mg two times at day and on Dec 6 he reduced it to 50/25mg a day. On December 25 he reduced it to 25/25. He will see me in March of 2024. My life has not been the same since December 6th. I tremble inside, so much that it wakes me up at night, my head seems to be spinning and I feel nauseous at times. I'd afraid to go out anywhere, because I can't drive with these symptoms. I'm trying to do regulated breathing that I learned in Yoga and I take Busprione for the anxiety. I just stay home!

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Sorry you're going through this, but there is freedom on the other side of your suffering. 1. Keep up your progress in yoga, breathing, time for yourself in relaxation & with the support of others on this newsletter. 2. Work with a practitioner without expectation of being weaned off less than a snail's pace of 2.5 - 4 years. Hey, if I could be weaned off 30 years of venlafaxine & buspirine, 20 years of Depakote in the above amount of time, you can do it too. The key to it all: Faith in yourself, your purpose in life, & your service to others in the same boat. A worked for miracle of sorts: At age 76, I am healthier, happier, more in synch with life than at age 46, when I started all those prescriptions over prescribed by docs whose focus was their bottom line, not the health of their patients. Thanks to the changes I made in my life, I took back the God-given power to have a voice, fight for what is right in mental/physical/ spiritual health. Happen to be the adult child of an alcoholic, ex-wife of an alcoholic, current wife of an "untreated Al-Anon spouse of a first wife who died of alcoholism. So, I also have the support of 12-Step brothers & sisters all over the world. My current psychiatrist was the first MD. to admit the role of spirituality in mental health recovery & partnered with me during the weaning process, as did a retired psychopharmacology professor turned psychologist who stressed the importance of meditation to calm me down naturally. Go for broke in self-care. Leave the worry & outcome to your Creator, not a robotic, humanoid health practitioner. Congratulations on taking your first steps to freedom. If I can do it in my 70's, you can do it too!

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I was given Lyrica 75mg twice daily for shingles. I took it for 8 weeks. It was a life-saver in the beginning but the loss of cognitive ability, balance, memory issues and depression frightened me so I decided to stop taking it. I took 75mg at night only for two weeks and then stopped completely. That's when the real nightmare began. The depression worsened and I actually had the thought "I now have enough pills to kill myself so why not just get it over" That scared me to death. The thought of suicide was SO casual, as if there was nothing wrong with it and was a viable way out of my misery. I really wanted to die and didn't care who I left behind to pick up the pieces. That is NOT who I am so I started researching "Lyrica withdrawal symptoms" and landed here. Thank GOD I did. The writings of others and their experience kept me going as well as kept me from turning to other drugs to help me get through it. It took 5 days full days, but this morning I finally feel like myself again. I have no balance issues, I can think clearly and have a general feeling of well-being and cheer. I actually, finally, feel "normal". If I got shingles again I dont know that I would take this drug even though the pain and itching of shingles is unbearable and this medication definitely stops it. The side effects as well as the brutal withdrawal symptoms would require me to have great caution. I want to thank all who shared their story on this site. You made it possible for me to beat this. For those who are just now starting their journey to get off this drug, I hope my words give you encouragement. There is light at the end of the tunnel, even though it may seem a long way off. I wish doctors were more helpful but I think they simply do not realize what this drug does to those who take it. I asked about addiction and long term effects of this drug when it was prescribed and got only "It's completely safe, not addictive and no long term effects" How wrong was that!!!! As of this morning, I am back to myself. I again want to sing and dance. I feel free. I have a new perspective of those addicted to any drug and how hard it is to get off. Just say "NO" isn't easy at all!!!! Dont give up. To feel normal again was worth every painful step to get here! Just for information purpose, I am female age 66 and in good health. At least I was until I got shingles!!! I cannot stress enough GET THE SHINGLE VACCINE!

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@parus

@yangedd So true what you described and I know I would not want to experience thus again. Withdrawal from Lyrica along with other prescribed meds had me in such a state of fear and pain there are no words. I did not know anything about withdrawal. I do now and never want to see, hear or feel the things I did at that time. I did not know at the time It was withdrawal. I do now and the memories are still vivid after over 8 years.

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Sorry you went through that, how are you feeling today?
Tracey

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@johnbishop

@texas1950, I'm sorry you are having so much pain. I've never had the pain with my neuropathy, just the numbness and tingling. If you don't mind my asking, how was your neuropathy diagnosed? Did you get a specific diagnosis like diabetic neuropathy or was it a result of nerve damage from surgery or an accident?

I think the more you can learn about your specific health problem, the better your chances are for getting something that works for treatment. I was diagnosed with idiopathic small fiber peripheral neuropathy. You can read my story in an earlier post here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985

Hoping you find some pain relief soon...

John

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Dear John,
No pun intended

Have you been checked out for Lyme disease?

A new member,
Tracey

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@tenacioustracey

Dear John,
No pun intended

Have you been checked out for Lyme disease?

A new member,
Tracey

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Hello Tracey @tenacioustracey, Welcome to Connect. To answer your question if you are asking me and not @texas1950, I have not been tested for Lyme disease but then have no reason to be tested since I have already been diagnosed with idiopathic small fiber peripheral neuropathy. Fortunately I only have numbness and some tingling but no pain.

Do you mind sharing what brought you to Mayo Clinic Connect? Are you trying to find some answers?

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@johnbishop

Hello Tracey @tenacioustracey, Welcome to Connect. To answer your question if you are asking me and not @texas1950, I have not been tested for Lyme disease but then have no reason to be tested since I have already been diagnosed with idiopathic small fiber peripheral neuropathy. Fortunately I only have numbness and some tingling but no pain.

Do you mind sharing what brought you to Mayo Clinic Connect? Are you trying to find some answers?

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Yes, thank you for answering my question.
I was on Lyrica/pregabalin and have been off of it for a week. I wanted to connect with others to learn about this drug. This is a mean drug. I have found alot of great info about what this drug does to your body once off of it. It causes a bunch of glutamate to storm your brain and depletes taurine. The glutamate storm may cause severe brain damage. There are liquid supplements that you can take to offset the damage. I really searched for the best that I could find. They are:
High amounts of vitamin C, magnesium taurine, to help with the taurine defecancy, vitamin D3 with K2 to help it get absorbed. When I fully understood the withdrawal symptoms I was horrified. This drug should be outlawed. I want to add that I am not a doctor so please do your own research. I am not giving medical advice. I was an Occupational Therapist and have enough savvy to know how to research, I just wish I did that before taking the pregabalin. I may try activated charcoal to take as an detoxifier because it is absorbed in the gut. I mentioned lyme disease because I have that. I have horrible headaches daily. I got an epidural in January and it took my pain away. Then I started pregabalin and my life have not been the same. I tried to get another epidural and it did not take. I know it was that I was not taking the drug anymore. Like so many on here the drug worked wonders for me for about 2 weeks and then it stopped. I had 60 pills given to me at 25mg and now only have 20 left. I am not going back on it and believe that through taking those supplements as mentioned they will help me. A component of withdrawal is an increase in pain etc...so for whomever is reading this I hope I have given some insight on what to do. I pray to Jesus Christ that I am returned to the person I was before taking this horrific drug. I took gabapentine and will try to get on a lower dose of that. I really only had one problem and that was horrible water retention. I am very blessed that I don't work. I would not be able to do so because of the demon of a drug pregabalin/lyrica is!!!!! I know very long, I bet you are already sleeping from reading this. I had a frank talk with my pharmacist about it because I was afraid of going into serotonin syndrome, very similar to a glutamate storm that happens in the brain when you get off it. I am married and have a wonderful husband who has been taking care of me. I am very grateful for him and for my faith. Reading the other posts on here freak me out, I can't believe that lyrica/pregabalin cause tooth/hair loss. What do you do for a living? Have a blessed day.
Tracey

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@tenacioustracey

Yes, thank you for answering my question.
I was on Lyrica/pregabalin and have been off of it for a week. I wanted to connect with others to learn about this drug. This is a mean drug. I have found alot of great info about what this drug does to your body once off of it. It causes a bunch of glutamate to storm your brain and depletes taurine. The glutamate storm may cause severe brain damage. There are liquid supplements that you can take to offset the damage. I really searched for the best that I could find. They are:
High amounts of vitamin C, magnesium taurine, to help with the taurine defecancy, vitamin D3 with K2 to help it get absorbed. When I fully understood the withdrawal symptoms I was horrified. This drug should be outlawed. I want to add that I am not a doctor so please do your own research. I am not giving medical advice. I was an Occupational Therapist and have enough savvy to know how to research, I just wish I did that before taking the pregabalin. I may try activated charcoal to take as an detoxifier because it is absorbed in the gut. I mentioned lyme disease because I have that. I have horrible headaches daily. I got an epidural in January and it took my pain away. Then I started pregabalin and my life have not been the same. I tried to get another epidural and it did not take. I know it was that I was not taking the drug anymore. Like so many on here the drug worked wonders for me for about 2 weeks and then it stopped. I had 60 pills given to me at 25mg and now only have 20 left. I am not going back on it and believe that through taking those supplements as mentioned they will help me. A component of withdrawal is an increase in pain etc...so for whomever is reading this I hope I have given some insight on what to do. I pray to Jesus Christ that I am returned to the person I was before taking this horrific drug. I took gabapentine and will try to get on a lower dose of that. I really only had one problem and that was horrible water retention. I am very blessed that I don't work. I would not be able to do so because of the demon of a drug pregabalin/lyrica is!!!!! I know very long, I bet you are already sleeping from reading this. I had a frank talk with my pharmacist about it because I was afraid of going into serotonin syndrome, very similar to a glutamate storm that happens in the brain when you get off it. I am married and have a wonderful husband who has been taking care of me. I am very grateful for him and for my faith. Reading the other posts on here freak me out, I can't believe that lyrica/pregabalin cause tooth/hair loss. What do you do for a living? Have a blessed day.
Tracey

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Hi Tracey, It is hard to read the stories of so many folks on Connect that are suffering and looking for answers. The best thing each of us can do is learn as much as we can about our conditions using whatever reliable resources we have available to help us become a better advocate for our health. It's great to hear you have a supportive husband along with your faith. It is something we all need.

Thank you for sharing the details of your journey with lyme disease. We have a niece with lyme disease and remember how difficult it was for her and her family prior to being diagnosed and trying to figure how to help. She is now a missionary and doing really well. I'm guessing you have already used the search feature on Connect. The tech team behind the scenes has done a fantastic job the past few years in beefing it up with additional function and features. I use it regularly when trying to locate discussions and members for specific conditions. You can find many discussions and member comments searching with "lyme" - https://connect.mayoclinic.org/search/?search=lyme++

To answer your question, I'm retired and fortunate enough to have retired twice from two long time jobs after serving in the Navy during the 60s. First career was with IBM (computer repair/maintenance and later as a technical writer). The second career was working for a local telephone company as their Internet helpdesk and computer guy. I found Mayo Clinic Connect while search for answers after being diagnosed with idiopathic small fiber peripheral neuropathy in 2016. I am blessed with the opportunity to volunteer with Connect which helps me give back to the community that helped me. I also owe everything to my bride of almost 59 years 🙃who provides me with attitude adjustments when they become necessary.
Hoping you have a blessed day also. Feel free to tag me using @johnbishop if you have any questions.
John

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