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Old 10-21-2013, 07:09 PM #21
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Originally Posted by triviafriend View Post
Gosh my ego is a bit bruised...lots of views of this page, but no one posting. I hope if you have a similar story, you tell it here, even briefly. Reading posts from others who were suffering was some of the best recovery medicine I found (which is why sharing is the cornerstone of the 12 Step Movement). But even if you are just reading, I hope this thread helps you!
hi,
the worst part was not knowing the lyrica was causing these issues. I had been to a chronic fatigue clinic and this doc diagnosed me with black mold toxicity. when I started having these strange symptoms/side effects, I thought it was deoxing from the mold and/or one of many supplements he had put me on along with lyrica.
I was on 100-150 mgs. daily for about 3+ months. then stopped all supplements and the lyrica cold.
within a day or two I felt the strangest feeling I have come to aknowledge were symptoms of dissociative disorder. Mind you, I have never had any psychiatric or mood disorders prior.
some people have called it brain zaps....but for me it was the most terrifying of the sx. It felt like I had done LSD. for anyone who hasn't, it makes you feel you are detached from yourself. sort of a very uncomfortable tingling feeling in my brain. I though it was a stroke.
I also had a burning feeling in my chest, heart palpitations.
EVERYTHING felt strange to me, like all my brain circuitry was going crazy.
I would not know how to drees properly, all my clothes except for seats felt uncomfortable, foods tasted different, my breathing felt forced. hot and cold at the same time. night sweats, big time. insomnia and a type of narcolepsy, where I would shut my eyes and be asleep immediately.I also had severe short term memory loss, more like amnesia. things from several years ago I could not remember.
The bottom line was, I was not feeling, tasting as I had before this drug.
How doctors can not know how horribly this drug can effect you or that the withdrawal can make one feel like there is no option but to check yourself into a mental ward. anxiety is too mild a word for what I experienced. it was pure terror.
I'm sure it would not have been as severe an experience for me if I had known it was the lyrica.I was told it was a panic attack, detox from the mold toxins, so being confused and not even considering this drug could be the cause, made it all the more terrifying. Since I didn't know, when my bone pain came back I would take more lyrica for a few days, then, boom I would have a setback. It has been 5 months since taking it regularly, and 3 weeks since I stopped completely.
Things are much better, the worst was about 3 months long. I am still not back to my "normal". I am wondering if anyone out there who had similar problems with this drug have gotten their "normal" back?
or can this drug have permanent side effects that never stop?
I am so grateful for the people in this forum. I have been struggling to find a diagnosis to what my disease is. When you have one doctor telling you you have MS and another that it's chronic fatigue, which both illnesses are really just a list of symptoms, it makes me feel really discouraged and hard to trust or know who to believe.
I need a root cause so I can tackle this from the inside, not just treat symptoms of different problems that must all be related to one root illness.
Thanks all, I hope to get to know you all and be anyone's shoulder to cry on, as misery does love company.
peace,
sara
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Old 10-31-2013, 07:54 PM #22
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Hi Everyone,
I'm so glad that some of my information has helped you! I have now been off Lyrica completely for several months. I'm finally starting to feel human again, but going through the nightmare of Lyrica withdrawal affected my overall health so drastically that I believe I've lost years of my life to this drug.

The good news is that you can stop. If you are one of the lucky ones who have no withdrawal, God bless you, enjoy your freedom. However if you, like me, dealt with, or are dealing with these issues now, I'm so sorry. All I can tell you is the longer you can taper, the easier it is.

I've finally lost much of the weight I gained too, 25 pounds so far, with 10 more to go. Once again, for some reason, the lyrica weight I gained was so hard to get rid of. I was down to about 1200 calories a day, no fat, no meat, no sugar. Using this regimen, I was able to lose this weight in about three months.

Be strong...You can get through this!
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Old 11-08-2013, 11:09 AM #23
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I was diagnosed with fibromyalgia and put on lyrica a year ago. Worked up to 150 mg. Needed to increase but decided to taper off instead due to the side effects. The medicine did help with the pain but started to experience brain fog, confusion, blurred vision, weight gain, and hair loss. The main reason I made the decision to stop is because when I would forget a dose, it felt as though I was on my death bed! I thought that a medicine couldn't be good for my body with those withdrawal symptoms. I notified my doc and her instructions were to take 75 mg for 7 days then 75 mg every other day for two weeks. This is my first morning after the decreased dose. It's pretty awful. My eyes feel swollen, nausea, vomiting, gi issues, and general pain. I am hoping my body adjust quickly! I am wondering if I should see how I feel over the weekend before I ask my dr. It could be a coincidence and the weather change causing my illness, but it feels like when I miss a dose.
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Old 11-26-2013, 04:40 PM #24
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I had to taper at a much slower rate to avoid withdrawal. I went down around 10 mg per week, eyeballing my dose. It took 8-10 months in all. Crazy, but true.
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Old 12-03-2013, 05:14 PM #25
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always remember tapering off medication needs the help of a Doctor .. Never do it on your own...
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Old 12-17-2013, 01:11 PM #26
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always remember tapering off medication needs the help of a Doctor .. Never do it on your own...
That's right, although my Doctor wanted me to taper much faster and I couldn't tolerate it. Had to slow down just to function.
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Old 01-05-2014, 11:31 PM #27
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Hi everyone...I know that there have been several threads posted by members who are dealing with difficult withdrawal symptoms caused by Lyrica. However I believe that it's time to start recording the experiences of those suffering, so we can understand which symptoms occur commonly. Many people going through withdrawal are shocked by how sick they have become. Doctors and healthcare workers often don't know, or don't believe that stopping Lyrica can be the cause of so much misery. As terrible as it sounds, Doctors often react with anger or frustration when a patient complains of suffering because they don't want to assume any responsibility or accept any blame for prescribing something that makes a patient so sick. "You must be imagining things, or even lying or exaggerating,because this drug does NOT cause this level of withdrawal!"...Well, we know better.

I was prescribed Lyrica for RSD, 450mg per day. I made the mistake of running out when my pharmacy was closed. I became so sick that I was unable to get out of bed for more than two weeks. I was unaware that Lyrica caused withdrawal, so much so that I thought I had the flu! My husband picked up my prescription by chance one day, while having his own prescription filled, and brought it home. I was blown away to find myself completely well within an hour of taking my regular dose. Then and there, I made the decision that I would stop taking the drug. I had found the side effects horrific anyway, with the weight gain, mental foginess and emotional deadness I had been experiencing while on Lyrica. I began a taper immediately.

I started reducing my Lyrica by 25mg every 10 days to two weeks. It was rough, especially when I went down in dosage, and it took days to feel even marginally better. Still, I stuck it out, beginning in January 2013, and finally finishing in July of the same year. A long, slow taper, I know, but I went as fast as I felt I could, enough to keep the withdrawal symptoms at bay so I could function. Many have found, like I did, that quitting cold turkey was virtually impossible, due to the fact that the terrible illness of withdrawal would just go on and on, never getting any better. I've heard of people sick for months while going through Lyrica withdrawal.

Reading about the experiences of others going through what I was going through was an enormous comfort to me. It made me feel that I wasn't crazy, that I was one of many who had been taken in by promises of pain relief without fear of addiction or withdrawal (that's what I was told!). The following is a list of the symptoms that I experienced during withdrawal from Lyrica. I encourage everyone to add your experiences to this thread as well. Believe me, there are lots of people suffering right now who will visit this sight and be comforted with the knowledge that they are not alone!

LYRICA WITHDRAWAL SYNDROME

Exhaustion, coupled with insomnia (horrible combination)
Depression
Crying jags
Rage
Extreme episodes of sweating
Chills
Inability to regulate temperature
Headache
Nausea
Stomach pain (often described as stabbing pain)
Severe Anxiety
Restless Leg Syndrome
Body aches
Muscle contractions
Vision problems
Suicidal ideation
Difficulty breathing (hard to take deep breath)
Lack of desire to socialize in any way
Mood swings

I know that more symptoms exist, and I hope that you will add your own experiences to this thread. Only by bringing this terrible issue forward will we ever convince anyone...Doctors, health-care workers or Pfizer itself to do something about the irresponsible way that this drug has been fed to us all, and force them to take measures to at the very least inform the public of the risks that taking Lyrica bring.
Ok, so here's the conundrum! I'm on 600mg of Lyrica along with methadone 10mg 4x a day (which I'm getting ready to titrate down due to a pain pump being put in) as well as 5/325 mg percocet. Now I know that I have to go off the methadone. I'll stay on the percocet as needed for breakthrough pain but I'm not sure about the Lyrica. I take all of my Lyrica at night to help me sleep through any breakthrough pain so that I can get through the night without having to wake up in the middle of the night just to take more medication for my pain, and since the 600mg does get me through an entire night, why not. However, with the fact that I have the pain pump and I'm on morphine through that pump, I don't know if I'll need to go off of it or just lower my dosage. I've never had to experience the withdrawal symptoms since I've never been without it in the first place. I've always had plenty. It's always shipped directly to me by the VA. I've also never had any side effects from it either, unless some of the weird things that have been going on are related to this, because some of the things that one of the other people posted about their side effects kind of stuck a chord with me. I have been experiencing blurred vision over the last year which come to think of it is about the same time frame that I a started on the higher dose of the Lyrica, as well as the severe joint pain that I've been having. Severe pain in the joints in my fingers, hips and knees. Maybe I need to bring this issue up with my Dr. Most people on this forum probably have issues with talking to their Dr's about this and having them believe then, but I love my Dr's because they listen to me and one that I'm not bsing them and they respect what I say to the because they know I know what I'm talking about as I use to be a nurse. That being said, I pray that I never have to find out because of you had that with the 450mg, I can't imagine what it would be like if I had to do it from a 600mg standpoint. I hope I never have to find out! Btw, the reason I have a pain pump and that I take all the medications that I do is because I have MS and I have severe chronic nerve pain from the damage that the MS causes! Just FYI

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Old 02-09-2014, 10:23 PM #28
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Hi there. Just reading through some of your posts and I think what you are doing for people going through this is wonderful. I am about a month and a half off Lyrica after tapering off 600mg at my highest dose. Your post on GABA and how it helped you to feel better really helped to connect the dots. You see, I was put on benzodiazepines back in 2008 for mild generalized anxiety.
I was feeling ill about 6-8 months later and didn't know it was that little pill making me sick. Long story short it took about another year to realize I wasn't dying from some odd disease (all work ups were 100 percent normal) and no doctor caught it was the clonazepam and Lorazipam causing such ill effects. Little did I know that the real horror would be when I went cold turkey and the nearly 15 months of relentless withdrawal that makes my Lyrica withdrawal feel like a walk in the park!!

What I'm getting at and what we need to spread to these folks out here is that Lyrica is thought to act on the same receptors that Benzodiazepines do. This is why many of the symptoms are similar when withdrawal hits! These receptors take months (and for some years) to "reset" and regain affinity to attract GABA and cause the nervous system to calm down and the odd symptoms people feel to dissipate.

I did a LOT of research while in benzodiazepine withdrawal and have educated myself FAR beyond what your run of the mill physician will tell people. I was told I was crazy, that NO DRUG can cause withdrawal months after cessation. What they don't know is that it's the ADAPTION AND CHANGE in the brain that is causing the problem, not the actual drug which had left the body months ago. Same holds true with Lyrica.

If you have any questions or would like me to help anyone on here (I am new on here) please let me know. Like I said, I am only a month and a half off Lyrica and am experiencing about half of the symptoms you have listed but compared to what I have been through, this is something that can be tolerated and put up with because it does get better it's just that people are quite surprised to find that these class of drugs can create such a long and painful withdrawal syndrome. No other class of drugs, even opiates, cause such a long drawn out withdrawal.

If anyone needs help or questions answered let me know. I'm not a doctor, just someone that has been severely injured by big pharm and a medical community that is completely unaware of what the drugs they so freely dispense can do to people.
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Old 02-21-2014, 02:01 PM #29
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Default Lyrica withdrawal

I was only on Lyrica for three weeks and came off it because of weight gain, I tried to come off first by stopping the tablets all together but the withdrawal was so bad that I started them again and decide to taper coming off, the withdrawal is still not very nice as I got to the taking none stage. Hopefully each day will get better
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Old 04-03-2014, 12:03 PM #30
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Thanks for this post triviafriend.

Yep, I went through it too (for RSD and DDD)... and had all of those horrid symptoms as well. I also got some severe rashes on top of bloat, foggy, dizzy, depression... My doctor said nothing about withdrawal being worse than the side-effects, but they were until I was put on Neurontin, a sister drug, and the S/E (side-effects) stopped. What trial and error this process is..and we are all different in how we respond to any drug or treatment...

Prayers for us that we help each other to find what can work!
May you be painfree!!

Hana
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