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Thread: Anyone withdrawal from Neurontin or Lyrica?

  1. #151

    Post My Lyrica story....

    I just finished reading the 15 pages, and even though the last post is over two months ago, I feel I need to add my experience so that it might help someone, or more than one.

    I had started taking Lyrica 75mgs about 18 months ago. I was having really bad nerve pain that was so bad in my hip/rump/thighs, that the injections I was getting for major issues with my Lumbar spine were impossible to tell if they were helping or not. The Lyrica took away a HUGE amount of that pain, and I was thrilled with how much it helped. It did keep helping, but my back issues got so bad that I ended up with no other option but Spine Surgery on 12/28/11. I had an ALIF approach from the front, as well as the back, and about a 12 hour operation. There was a two level fusion with cadaver disc replacements at L5-S1 and L4-5, and further fusion with rods and screws up through L2. I also had to have major decompression work done for stenosis and two facet joints which had to be removed. So, 10 screws, rods, and 4 level fusions later, I am home and all of the sciatica pain I had along with the pain in the lower back (all on the right side) are gone. But, I have a fair amount of numbness and nerve pain in the thighs and upper rump. I also had a fair bit of Lymphedema in my feet and lower legs that only got resolved when I researched it and found that I needed Lymphatic messages and leg wrappings (two of them and I was like new)

    Now, the Lyrica story that needs to be told. When I went in to have my surgery, I was on 100mgs Lyrica 3x/day. In the hospital, they insisted on me taking 50mgs 3/day. At the time, I was under NO belief that I needed to stay on Lyrica. My neurologist, who put me on Lyrica, basically told me not worry. So, with all that said, and more coming, I realize now that I am SO lucky that my surgeon insisted I take it in the hospital for the week that I was there. Fast forward to March, and I had been having more nerve pain due to the operation, I imagine, from all the stuff that had to be moved and touched. So, I had upped my dosage to 150mgs 3x/day to see if it helped. When it did not seem to help much, I came down to 100mgs/3x day and then within a week, I was off it completely. Mind you, I had no concerns other than my spine surgeon warning me about seizures. I was also on dilaudid and oxycontin for pain, and had basically gone down to taking oxycontin as needed, and strangely I found myself reaching for oxy more and more, sleeping less and less, being in more pain (bottom of feet, calves, thighs, upper butt/lower back) and painful to sleep...or try to sleep. My wife had gone out of town on business on a Monday, and by tuesday night, I was in SERIOUS trouble. I had fatigue that was completely debilitating. Just rolling over in bed took more than any strength I had. I had no appetite (not so much so that I was nauseous) but had to FORCE myself to eat. Feel VERY quickly into a depression that I could not even comprehend. I felt lost, scared, and so outrageously fatigued that moving was almost impossible. Walking without shoes on, was so painful on the bottom of my feet, that I was put on shoes just to walk to the kitchen for water. I completely understood how easy it would be for people to end it, because the feeling was of total helplessness and a life that was impossible to stand. I know that it sounds NUTS, but this is (was) the most amazingly scary thing I have ever been through. And this coming from someone who has battled fatigue at times, my whole life. I am a big guy. 6'3". I know that I lost weight after the operation, but the weight was melting off of my for the 4-5 days my wife was away and I was in this "moment". I started out before the operation, at 257lbs. The last time I weighed myself a day ago, was 239lbs. My wife came home yesterday. I was functioning at times. During the past few days, the neurologist never mentioned being off Lyrica could do this, and actually suggested a drug called Cymbalta. I took one 30mg does, and it was the WORST day of all. I was actually very scared, but never told my wife as I did not want her to cancel her trip and come home. Stubborn, but I have to admit I needed her there. But, there was nothing that I could even imagine her doing for me to help, but moral support. So I battled it, but it was absolute hell. Even after she was home, I still had no idea what really was happening to me. I was still hurting, scared, not appetite, fatigued terribly, and depression (that was subdued simply because she was there with me)

    On to today. I find this site, and read all 15 pages. I decide to take a dose of lyrica. I had 100s and 150s. I took the lowest dose I had, 100mgs. Within an hour or two, I felt almost back to normal. Now, my normal is still pretty weak at times, and plenty of pain, but it was HEAVEN compared to the dark hell I was in 4-5 days preceding today.

    THE ANSWER for ALL of my awful symptoms, was simply WITHDRAWAL from LYRICA.

    Of course, now I have to figure out what I want to do. I know the enemy that Lyrica can be. But I also know the friend that it was. At this time, I think I have to find a level that I can take for now that makes me feel ok, and then work down to the lowest dose possible. I am hoping that 50mgs 3x/day, or 75mgs 3x/day. I may try to get off of it completely, but there is no way I can deal with what I just went through.

    I just want to thank all those who told their story or allowed us to here their cry for help, as I can tell you that it convinced me to realize that it WAS Lyrica. At the very least, I now know what I am dealing with, and that is a blessing that I can't describe, but you all know what I mean.

    I will add more as I get a reading on what is happening with me. I hope I can do well one way or another.

  2. #152

    Lyrica given to you by a psychiastrist to relief anxiety f

    Quote Originally Posted by jarocho2003 View Post
    Hi everyone,
    This will be my first post here and it relates to Lyrica as it was given to me by psychiatrist to relief anxiety from tapering off Ativan.

    Anyways, I'm not going off this med yet, but I'll like to know what would be a good tapering schedule to get off 150mg of it?

    Any references?

    Jarocho
    Lyrica given to you by a psychiastrist to relief anxiety from tapering off Ativan.

    Okay this post confuses me as I am having trouble with terrible anxiety that I have not had before. I am going back ON Lyrica in 50 mg doses two to three times a day to remove the withdrawal horrors.

    Then I was suggested to go on Xanax to relieve the anxiety that others have suggested and noted that they suffer from all from withdrawal symptoms. Now I am confused as the Xanax seems to work so I am slowly cutting back on Lyrica and it does not seem to help with the burning/stinging pain.

    NOTE: Different doctors, therapists, psychologists, pain specialists, psychiatrists, and, depending on their specific training, where they were trained, and do they specialize and or were trained in Spinal Cord Injury issues specifically, or just general anxiety and psychological issues, and how many years have they been practicing; all have to be taken into account when actually doing what they suggest. Over the 33 years in the chair, I am now 73, I have heard so many conflicting ideas and suggestions I am now listening to my own inner voice and reading the posts in CCC forums which have been a lot of help.

    I'm going back and reply to some other posts regarding the horrors of anxiety.

    Gary
    Gary Is = L-1 Para for 34 years.....................
    ~~~~~~~~~~

  3. #153

    Yes! I *totally* hear you, Stevezi!

    Quote Originally Posted by Stevezi View Post
    I just finished reading the 15 pages, and even though the last post is over two months ago, I feel I need to add my experience so that it might help someone, or more than one.

    I had started taking Lyrica 75mgs about 18 months ago. I was having really bad nerve pain that was so bad in my hip/rump/thighs, that the injections I was getting for major issues with my Lumbar spine were impossible to tell if they were helping or not. The Lyrica took away a HUGE amount of that pain, and I was thrilled with how much it helped. It did keep helping, but my back issues got so bad that I ended up with no other option but Spine Surgery on 12/28/11. I had an ALIF approach from the front, as well as the back, and about a 12 hour operation. There was a two level fusion with cadaver disc replacements at L5-S1 and L4-5, and further fusion with rods and screws up through L2. I also had to have major decompression work done for stenosis and two facet joints which had to be removed. So, 10 screws, rods, and 4 level fusions later, I am home and all of the sciatica pain I had along with the pain in the lower back (all on the right side) are gone. But, I have a fair amount of numbness and nerve pain in the thighs and upper rump. I also had a fair bit of Lymphedema in my feet and lower legs that only got resolved when I researched it and found that I needed Lymphatic messages and leg wrappings (two of them and I was like new)

    Now, the Lyrica story that needs to be told. When I went in to have my surgery, I was on 100mgs Lyrica 3x/day. In the hospital, they insisted on me taking 50mgs 3/day. At the time, I was under NO belief that I needed to stay on Lyrica. My neurologist, who put me on Lyrica, basically told me not worry. So, with all that said, and more coming, I realize now that I am SO lucky that my surgeon insisted I take it in the hospital for the week that I was there. Fast forward to March, and I had been having more nerve pain due to the operation, I imagine, from all the stuff that had to be moved and touched. So, I had upped my dosage to 150mgs 3x/day to see if it helped. When it did not seem to help much, I came down to 100mgs/3x day and then within a week, I was off it completely. Mind you, I had no concerns other than my spine surgeon warning me about seizures. I was also on dilaudid and oxycontin for pain, and had basically gone down to taking oxycontin as needed, and strangely I found myself reaching for oxy more and more, sleeping less and less, being in more pain (bottom of feet, calves, thighs, upper butt/lower back) and painful to sleep...or try to sleep. My wife had gone out of town on business on a Monday, and by tuesday night, I was in SERIOUS trouble. I had fatigue that was completely debilitating. Just rolling over in bed took more than any strength I had. I had no appetite (not so much so that I was nauseous) but had to FORCE myself to eat. Feel VERY quickly into a depression that I could not even comprehend. I felt lost, scared, and so outrageously fatigued that moving was almost impossible. Walking without shoes on, was so painful on the bottom of my feet, that I was put on shoes just to walk to the kitchen for water. I completely understood how easy it would be for people to end it, because the feeling was of total helplessness and a life that was impossible to stand. I know that it sounds NUTS, but this is (was) the most amazingly scary thing I have ever been through. And this coming from someone who has battled fatigue at times, my whole life. I am a big guy. 6'3". I know that I lost weight after the operation, but the weight was melting off of my for the 4-5 days my wife was away and I was in this "moment". I started out before the operation, at 257lbs. The last time I weighed myself a day ago, was 239lbs. My wife came home yesterday. I was functioning at times. During the past few days, the neurologist never mentioned being off Lyrica could do this, and actually suggested a drug called Cymbalta. I took one 30mg does, and it was the WORST day of all. I was actually very scared, but never told my wife as I did not want her to cancel her trip and come home. Stubborn, but I have to admit I needed her there. But, there was nothing that I could even imagine her doing for me to help, but moral support. So I battled it, but it was absolute hell. Even after she was home, I still had no idea what really was happening to me. I was still hurting, scared, not appetite, fatigued terribly, and depression (that was subdued simply because she was there with me)

    On to today. I find this site, and read all 15 pages. I decide to take a dose of lyrica. I had 100s and 150s. I took the lowest dose I had, 100mgs. Within an hour or two, I felt almost back to normal. Now, my normal is still pretty weak at times, and plenty of pain, but it was HEAVEN compared to the dark hell I was in 4-5 days preceding today.

    THE ANSWER for ALL of my awful symptoms, was simply WITHDRAWAL from LYRICA.

    Of course, now I have to figure out what I want to do. I know the enemy that Lyrica can be. But I also know the friend that it was. At this time, I think I have to find a level that I can take for now that makes me feel ok, and then work down to the lowest dose possible. I am hoping that 50mgs 3x/day, or 75mgs 3x/day. I may try to get off of it completely, but there is no way I can deal with what I just went through.

    I just want to thank all those who told their story or allowed us to here their cry for help, as I can tell you that it convinced me to realize that it WAS Lyrica. At the very least, I now know what I am dealing with, and that is a blessing that I can't describe, but you all know what I mean.

    I will add more as I get a reading on what is happening with me. I hope I can do well one way or another.


    Stevezi-

    I have literally scoured the internet to find other people who have had these kind of withdrawal effects. You wrote:

    "I completely understood how easy it would be for people to end it, because the feeling was of total helplessness and a life that was impossible to stand. I know that it sounds NUTS, but this is (was) the most amazingly scary thing I have ever been through."

    Abso-frickin-lutely. That's EXACTLY how I feel. I miss 1 dose and it gets bad, if I miss 2 doses... it's the pits of hell. For me this feeling is a severe form of the depression/anxiety I had to begin with. Odd. Years ago I was feeling so great that I weaned myself off Lyrica- spacing the doses out from 12 hours to 13, 14, etc. Eventually I hit the "miss 2 doses" mark and felt a slight bump of panic, but it passed and I was "in the clear." Literally. Spent the next year or so happier and more "me" than ever.

    A few years ago I was "in the bad place" (seems like a combination of anxiety, depression, and panic) and went back on Lyrica. I've normalized out now, but every so often - or towards the end of winter- I start dipping down again even though I'm still on Lyrica. I've learned that hangovers are a major trigger for anxiety/panic attacks.

    I don't have much practical advice, other than emergency drugs that can carry you through those worst of times. Xanax, which is a wonder drug, can work magic on eliminating the "everything in life is stupid and I hate being conscious ever second" feeling, Adderall is suprisingly effective in getting back to "normal" for a while- especially if there are things you have to do, and, as a last ditch effort, I take a Percoset. That will make everything perfectly awesome for about 2 hours, then it usually ends up worse than I was before. But sometimes you just need those 2 hours.

    Regardless, it's all stupid. I've done enough research on all this to fill 6 doctoral dissertations, and the whole thing is irrational and probably some weird chemical imbalance. Life factors, situations, current events, attitudes, jobs, relationships- none of these matter when it comes to this awful "depression" (yes, I used quotes). You said it perfectly when you described Lyrica as both your friend and your enemy. I see it as a great tool (why suffer if you don't have to) but ultimately something that should be temporary. Still workin' on stuff.

    Oh, and I didn't mention that my whole "situation" started with unexplained pain in my back/shoulders (which later spread) that occurred when I was playing trumpet in a college marching band. I didn't notice much difference in "pain" (again, misuse of quotations, but I can explain if you want) but who knows.

    If you want to talk more about this or share stories/remedies/complaints, please feel free to email me at caleb dot shreves at g mail dot com!

    Caleb

  4. #154

    Angry Lyrica withdrawl

    NOTHING could have prepared me for the withdrawal sysmptoms, nor the duration of them I have experienced.
    I was diagnosed with fibromyalgia and prescribed Lyrica to relieve the cramping and twitching. I started on 50 mg twice a day, but was later changed to 100 mg twice a day.
    I gained over 40 lbs, and had problems I later learned side effects, that I attributed to weight gain and fibromyalgia. A year ago, I developed monocular diplopia, and have seen numerous doctors. I decided to stop taking Lyrica, because of continued weight gain.
    The withdrwal.......
    My doctor put my me on 100 mg once a day......I think the first mistake. My weaning was done to fast. 2 weeks on 100 mg once a day, then stopping.
    During this entire time I have experienced nausea, stomach cramps, diarrhea, sweaty hands and feet, headaches, insomnia, anxiety, an inability to eat, dizziness, night sweats, and tremors. In addition, I have had trouble standing and walking. I think that is everything. I went for 3 days only being able to tolerate water. This has lasted for 37 days. I am getting somewhat better, but eating still makes me nauseous and I have to lie on my stomach to begin feeling better.

    I have learned that diplopia in a common side effect, and have never been told that it was a possibility Lyrica could be the reason. I had tear plugs put in and cataract surgery to try to correct my diplopia. Nothing to date has worked, and I remain house bound and unable to drive. I experienced wheezing and other side effects that seem to be resolving themselves. No one can tell me if the vision loss is permanent. Why, since there are so many side effects is this drug still approved by the FDA?

    Thanks to all that have contributed an opinion, you have made a difference that no doctor did. I know I am not losing my mind

  5. #155

    Angry Lyrica withdrawl

    NOTHING could have prepared me for the withdrawal sysmptoms, nor the duration of them I have experienced.
    I was diagnosed with fibromyalgia and prescribed Lyrica to relieve the cramping and twitching. I started on 50 mg twice a day, but was later changed to 100 mg twice a day.
    I gained over 40 lbs, and had problems I later learned were side effects, that I attributed to weight gain and fibromyalgia. A year ago, I developed monocular diplopia, and have seen numerous doctors. I decided to stop taking Lyrica, because of continued weight gain.
    The withdrwal.......
    My doctor put my me on 100 mg once a day......I think the first mistake. My weaning was done to fast. 2 weeks on 100 mg once a day, then stopping.
    During this entire time I have experienced nausea, stomach cramps, diarrhea, sweaty hands and feet, headaches, insomnia, an inability to eat, dizziness, night sweats, and tremors. In addition, I have had trouble standing and walking. I think that is everything. This has lasted for 37 days. I am getting somewhat better, but eating still makes me nauseous and I have to lie on my stomach to begin feeling better.

    I have learned that diplopia in a common side effect, and have never been told that it was a possibility Lyrica could be the reason. I had tear plugs put in and cataract surgery to try to correct my diplopia. Nothing to date has worked, and I remain house bound and unable to drive. I experienced wheezing and other side effects that seem to be resolving themselves. No one can tell me if the vision loss is permanent. Why, since there are so many side effects is this drug still approved by the FDA?

    Thanks to all that have contributed an opinion, you have made a difference that no doctor did. I know I am not losing my mind

  6. #156
    I too wonder when the withdrawal ends, but things are a very little bit better now. It is day 37 for me (of withdrawal). I refuse to take Lyrica to make me feel better. I have already paid too much of a price.

  7. #157
    I developed monocular diplopia while taking Lyrica. Like you I also developed skin problems and rashes.

  8. #158
    wow! i weened myself off lyrica, i was taking 150mg nerontin and 100mg a day so i never had a really high dose. didnt notice any withrawal systems. i do take 100mg in a one time dose when the shocks get bad. what i have noticed is when i do this i might as well forget reading the paper the next day. totally whacks my vison for a day or two.
    very blurry, and i have to hold anythig i try to read about three feet from my face. and the doctors keep telling me to take it, shit....i'll take the jolts.
    Last edited by lonecoaster; 04-10-2011 at 11:42 AM. Reason: ................

  9. #159
    I will keep you in my thoughts. I too have had the jolts you speak of, but eyesight is too big a gift to mess around with. Take care.

  10. #160
    All I can say is Wow after reading all of these threads. I am looking to taper down my lyrica and wanted to know what the side effects were going to be. Before I started the med I was in extreme pain and had trouble walking, major anxiety or just living. I too understood why folks would commit suicide as pain with no end in sight is very over whelming. Lyrica has given me the freedom to experience less pain, I am currently on 225mg twice a day. The weight gain has been horrible. I can't pin all my weight gain on the med however i can pin the stomach puffiness to it. I can't lose weight no matter what I do and something has to give. I will def take everyones lessons learned as I go through all of it. Thank you for all for sharing your experiences.

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