Chronic Pain Whatever the cause, support for managing long term or intractable pain.


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Old 10-15-2013, 06:10 PM #151
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Default my lyrica hell

hello all,
I cannot tell you how relieved I was to find this forum and fellow lyrica victims.
I went to a clinic in florida to be treated for chronic fatigue symptoms, was hooked up to an IV daily for a month. this doctor claimed his treatment was 95% natural. I was so desperate at that point I agreed to his treatment without out knowing what all was in the drips. amino acids and vitamins, he said.
He also put me on several prescription medications to take after completing the month of IV's. One of those drugs was lyrica, the other hormone replacement therapy.
I felt great the first month or so after coming home, then started getting some weird numbness and tingling, first in my feet. So, after a little more then 3 moths on the lyrica and multiple other supplements he had me on, I stopped taking everything, cold turkey. To see what the culprit may be. No one had ever mentioned to me lyrica was addictive or that I should taper off. within days after stopping the lyrica, and supplements I felt like I was on a bad acid trip. I ended up in 2 emergency rooms with heart palpitations and anxiety through the roof.
I told the ER docs my history and about the IV therapy that was "proprietary" information, sure that something in those drips had caused this breakdown.
I even mentioned the lyrica. Panic attack they said. I had never experienced one and wasn't buying that in my 50's I would all of a sudden get anxiety.
I am telling this story6 months after the initial withdrawal. I had been on lyrica for 3 months, 100mg. a day for fibromyalgia, he said.
I had no idea my symptoms were from the lyrica, so when the pain came back I would take some for a few days, then feel crazy again. long story shorter, I finally, through my own research realized it was the lyrica.
this drug made me feel like I was loosing my mind. sweating, yet cold. all clothes feeling uncomfortable, pins and needles prickly feeling everywhere.
bowel issues i have never felt before and I still can't even verbalize the side effects as well as I would like to. I have severe memory problems, anxiety still off the charts, I cry for no good reason. I wanted to admit myself to a psych ward. all these last 6+ months not knowing why this was happening because that idiot doctor would not consult with me after he got his 15K.
I have come off of opiates and this withdrawal made that look like a walk in the park.
I have muscle twitches, weird sensory problems, the constant prickly feeling none of which I had before.
so its been 6 months since I took 100mg. daily and just a few days worth here and there since then until 2 weeks ago. The initial withdrawal was so intense for 2 months at least.....I would finally have a day where I felt the exorcism was over and I felt normal, then bang, the jaw clenching, etc. etc..
the worst part is my doctor here does not know of lyrica withdrawals or side effects. But lucky for me I found you folks before I killed myself. At least now I know what the beast is and pray it will end. It will, won't it??
thanks all for your input and any advice on how to minimize the side effects, please let me know,
peace.
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"Thanks for this!" says:
eva5667faliure (10-21-2013), Icanndo (10-27-2013), SunkissFL (12-26-2015), vbeck (11-20-2013)

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Old 10-19-2013, 12:03 PM #152
Heather D Heather D is offline
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Default Ugg

I have been on Lyrica for 2 years. I now take 50mg daily and I cant stop. I have tried several times. I recently tried to go to every other day and had extreme dizziness and nausea. So I started again. That was two weeks ago and I still am having extreme dizziness. I am having a hysterectomy in a week and a half. Prob not a good time to stop but I have vacations in Jan and March. Any ideas?
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Old 10-20-2013, 10:49 AM #153
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Originally Posted by Heather D View Post
I have been on Lyrica for 2 years. I now take 50mg daily and I cant stop. I have tried several times. I recently tried to go to every other day and had extreme dizziness and nausea. So I started again. That was two weeks ago and I still am having extreme dizziness. I am having a hysterectomy in a week and a half. Prob not a good time to stop but I have vacations in Jan and March. Any ideas?
Hi Heather,

I am just at the end of getting off lyrica. I did it slowly. Was on 100 to 125 mg a day. My doc set up the schedule which was too fast so I just did this:

4 pills...25 mg every 8 hrs for 3 days
3.5
3
2.5 25 mg spaced thru day for 3 days
2
1 25 mg every 12 hrs for 3 days
1/2 25 mg every 12 hrs which is where I am now

I do have some symptoms but I am just trying to eat well and take good care of myself. I am sweating alot with any exertion and I too feel some dizziness and clumsiness and headaches. I do have to say the beginning was worse...I have been on them for yrs, I think something like 5 or 6 yrs.

I have broken apart the capsules to make the 1/2's. I would suggest just going slower instead of doing every other day. Also, maybe not a good time to mess with your meds 1.5 wks before surgery. I wish you the best with taper and surgery. Take care, Diandra

p.s. forgot to mention my doc letting me take lorazepam to calm down all the jitters and racing mind but some folks mentioned Benadryl helps. doc also let me take clonidine but I was really given that because I a going off norco(hydrocodone) next.

Last edited by Diandra; 10-20-2013 at 11:07 AM. Reason: more info...
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Old 10-21-2013, 08:04 AM #154
malugssuak malugssuak is offline
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Smirk Getting off the Lyrica Subway

Hello,

Am new here. Contracted Transverse Myelitis 4 years ago, and with the 5 spinal operations stemming from an industrial accident giving me 7 fused vertebrae, and the TM I am lucky to be walking. Take 300mg-450 Lyrica and 600 Gabapentin/day for nerve pain caused by the Transverse Myelitis. Really, it was the only thing that could stop the all-over bee sting pain. Plus, due to the previous accident damage to the spine, the TM added to it caused an "anomaly" in the brainstem, causing me seizures, which are mostly under control now, with 300mg/day Dilantin, and - amazingly - a teaspoon of brown mustard morning and night.

My dear, patient and caregiver wife has been telling me that my mind is definitely slipping - memory, etc. Then read that Lyrica causes reduction in new synapses being formed! Must get off it! Have tried before, but the pain came roaring back each time. Only Gaba can substitute for it.

How much coffee I drink just to stay upright and conscious! Maybe 2 large pots/day, plus strong tea in between. Same with any of you others?

Thanks,
Malugssuak
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Old 10-27-2013, 01:27 AM #155
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I have tried coming off this drug 3times. last time reducing dosage. But pain increased also. had a miserable month. The worst being when I actually stopped it. By the next day, sweats, itchy skin, pain unbelievable. saw Gp mid afternoon. all he offered was go back on at lower dose. by night time, I was a wreak. bedrest.couldnt move. screwdriver burrowing into my lower back, unbelievable.
survived the night, but next morning, returned to full usual dose of 600mg daily. By the following day, I was bouncing around back to usual self. took me another week to feel less fatigued etc.
its a dangerous drug. I felt like one of those heroin addicts coming off cold turkery. I lothe this drug,but it works for me.
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Old 11-10-2013, 06:55 PM #156
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Quote:
Originally Posted by tullys View Post
I have tried coming off this drug 3times. last time reducing dosage. But pain increased also. had a miserable month. The worst being when I actually stopped it. By the next day, sweats, itchy skin, pain unbelievable. saw Gp mid afternoon. all he offered was go back on at lower dose. by night time, I was a wreak. bedrest.couldnt move. screwdriver burrowing into my lower back, unbelievable.
survived the night, but next morning, returned to full usual dose of 600mg daily. By the following day, I was bouncing around back to usual self. took me another week to feel less fatigued etc.
its a dangerous drug. I felt like one of those heroin addicts coming off cold turkery. I lothe this drug,but it works for me.
Sorry to hear about your Lyrica struggles. I have posted many many posts to this thread, going into detail of my battle coming off the drug. Specifically, I want to respond to your experience with horrible pain initially trying to stop lyrica. I had a similar experience, which I can now say was a side effect of withdrawal from lyrica. My pain was horrible when I first started tapering down, but I've been off lyrica completely for 15 months now (wow, almost can't believe it's been that long), and that pain did subside. I still have my normal pain for which I originally took lyrica for, but I'm so glad I pushed through to get off Lyrica.
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Old 11-12-2013, 12:33 PM #157
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Am happy to have found a Lyrica withdrawal symptom group, as well. Holy sakes, no idea about the addictive power of the drug. I have read many have found physicians didn't explain Lyrica was so addictive. I think they just don't know. I was on up to 600 mg/day under a neurologists care. I got what I thought was flu, so went to an Urgent Care and that physician was the one who told me that was far too high and talked about problems. Turns out it wasn't the flu, wasn't w/d either since I wasn't off it, it was a noravirus. Am on 250 mg/day taken once/day at night now and under a rheumatologist's care (she's the best). Have been on Lyrica probably 5 years, maybe more?

Have other underlying disease problems; but, whenever I come down with a noravirus it takes about 3 weeks to get over it and generally 2 weeks of that is chronic, severe vomiting so no drugs stay in system. So guess I do the periodic episodes of w/d.

I have found for other anxiety issues, an herbal remedy called A2X. If I start to get high anxiety, I take it for a week or week and a half and then stop it. No w/d problems. I'm sure all natural remedies carry their certain risks, too. So everyone should do a lot of research and make their own decisions.

Thanks to all who've been so candid on their experience. You are all pretty tough cookies to get through the w/d.
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Old 11-20-2013, 10:25 AM #158
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Post Lyrica withdraws

Thanks for your post, I Thought I was the only one.

I had been on 600 mgs a day since 2007 for nerve pain. I know what you are going threw. I am now taking 300 mgs a day and suffer sweats just walking to the kitchen, no stairs. I feel sick to my stomach all the time. Did or do you feel sick to your stomach when you stopped taking Lyrica?

Hope you get to feeling better and the withdraws go away. I have tried several times to get off lyrica with no success.

Vbeck
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Old 11-20-2013, 11:10 AM #159
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Originally Posted by vbeck View Post
Thanks for your post, I Thought I was the only one.

I had been on 600 mgs a day since 2007 for nerve pain. I know what you are going threw. I am now taking 300 mgs a day and suffer sweats just walking to the kitchen, no stairs. I feel sick to my stomach all the time. Did or do you feel sick to your stomach when you stopped taking Lyrica?

Hope you get to feeling better and the withdraws go away. I have tried several times to get off lyrica with no success.

Vbeck
hi vneck...I am off now 3 wks but was only on 125mg per day. I was nauseas but more loss of appetite, had no interest in eating at all which was a good thing because I am over weight. I was very short tempered and jittery but most has worn off. I also had wicked sweats just walking, had to change clothes several times a day. Lyrica is excellent to help neuropathy and was a Godsend to me at the time...I am not knocking it by any means...just harder to get off of than I expected although my doc did warn me to do a very slow wean because I am prone to seizures.

Nothing wrong with staying on the 300 mgs if you need it. Are you having the sweating at that dose or just when lowering the dose? Diandra
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Old 12-14-2013, 01:03 PM #160
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Originally Posted by quitlyricalive View Post
HELLO EVERYONE!:

I just want to make an update since I'm 99% certain this is the place to come for accurate information on the side effects of discontinuing Lyrica. Please refer back to my prior posts to get a clearer picture of my recovery time, how long I used Lyrica, dosage, tapper period, other drugs I used, why, etc. This is day 74 of no Lyrica, that is, a few days shy of two and a half months. I do not take any other drugs. It's hard to believe I'm speaking from this position, having escaped this far. I remember how long the hours were and how I just wanted the days to rack up, welcome to the summer of 2012.

I'm am chiming in here to tell you all that I am pretty sure that the past few days I have felt more like myself. I still toss and turn at night for a while, and my sleep pattern is really messed up, but there are times when my body actually shuts off I think, this is just in the last couple days. I am also feeling more positive, my memory is improving, I can remember words, I have ideas, articulate stories--I am not as tongue-tied, I am more relaxed. It is very difficult to quantify the Lyrica recovery period because it happens so slowly and sometimes you think it might be getting better and it does not, it's up and down.

Through this period I have suffered from many things I don't normally deal with like: social anxiety, insomnia, depression, etc, lack of feeling. For the past months, all I have been in-touch with is how bad I feel, I have been very self-centered in a way, because how I feel has been as the forefront of my existence, it's terrible.

Lately this is changing a bit and I am able to have feelings beyond how I feel physically and emotionally. I exercise, do not drink, smoke, etc. This Lyrica deal has been the most challenging thing I have every gone through, I hope that it has humbled me and made me a better person.

I am not fully recovered by any means. I have heard from others who are not taking other drugs in place of Lyrica, or drugs that work in similar ways, that recovery time can take 4months. During the past months I have done lots of work on myself, like running, eating healthy, quitting smoking, and it felt like I was getting nowhere for so long, that it wasn't making a difference. I just kept saying to myself that when this passes and my body and mind recover, when the chemistry in my brain resumes normally, I will be able to access all of the strength and integrity that I am currently building but cannot feel.

My love is with all of you who have stopped Lyrica, stay strong, be a steward of your own body. Go easy on yourself as you go through the depressions and anxiety, remember that it is not reality, it is that you have been poisoned, and as illogical as it may seem, this one takes a long time to get over.

My appetite came back after a few weeks, but I was depressed so it was hard eat, but I just did it. I created a rhythm for myself and stuck with it, it became all I had really, I trusted in it, it was kind of amazing, maybe even spiritual as I was so empty, felt so abject, hopeless, and helpless. Listening to music was really helpful and gallons of water each day, and enough can't be said about walking, that's what I did, it became the option, I must have walked hundreds of miles during the past two months.

It will go up and down and you'll think the damage is permanent, but peace comes. Peace comes and this will ultimately unravel.

You may always PM me (if that is possible) if you want more information about my experience or need support with your own.

I'm feeling some happiness folks, regular, old-fashioned, simple, run of the mill feelings of happiness and well being I never thought I would feel again.

Thank you and take good care, I will update again.
I wanted to thank your for this post quitlyricalive. I am down to 12.5mg a day of Lyrica from 100mg a day and am suffering terrible depression, GI symptoms and a very poor memory and cognition. I am terrified my memory issues are permanent. Did your memory ever fully return? I fear mine will not and that I will be stuck here as a shell of my former self because of this drug. Any reassurances is helpful.

Thank you

p.s. I feel my memory issues are worse as I taper than they were at my highest dose if that makes sense.
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