Nightmare lyrica withdrawl

Discussion in 'Fibromyalgia Main Forum' started by chippercricket, Jul 19, 2011.

  1. chippercricket

    chippercricket New Member

    I would like to share my lyrica experience. Due to my neck issues, my pain doctor kept increasing and increasing lyrica. As many meds have different dosages, i had no idea what was a lot, and what wasn't. I ended up at 450mg a day. I found out later after many terrible falls, falling asleep at any time that this was 150mg over the recommended dosage, and it tells you that withdrawls will be much more severe after 300mg. My doctor started to wean me off with a drop of 150mg a day. I had no idea what i was in for and i don't think she fully understood it either.

    My periods ceased, i suffered menopause like sweats. I am 38 now. 36 then. I suffered terribly. It is now 2 years later and i took the task in my own hands. After 2 years i am still trying to get off lyrica. I have been succesful at reducing my daily intake to 75mg a day. Even though it has taken 2 years to get to this point, i am very proud of myself. I still have no periods, i have been tested for menopause and i am not in it they say. I suffer from sweats. These are not normal sweats. I used to run long distance and i have never felt anything like these. They literally feel like i am on fire inside out.

    I forgot once to take a pill, and i always thought my narcotics were responsible for my issues, but when i woke up, i was in such a state it was like a scene from a movie. I also read on the lyrica info sheets that this medication causes skin sores in animals, which was a huge motivator for me. I fully get that for many people this has made their quality of life better. It is worth it if it does that for you. I wish that these doctors though had taken much more into account for me.

    I also realize that i should have taken a much more active role in my care. I am now hopelessly addicted to oxycontin for pain, and i am trying to stabalize myself with the lyrica before i drop a bit more. for those of you out there that do not get a huge positive from this drug, i would seriously, with the help from your doctor, consider getting off this drug. I regret the day i took that first pill.

    Please understand that for those who benefit, i get it is worth taking. I would never take it just to help me sleep at night. I have suffered with this drug for 2 years. Imagine what it has done to my body.

    I wish everyone on this site good health and positive feelings for their future. I learned the hard way that some doctors just treat their patients like cattle. We have to be more involved with our own health care, as these doctors go home at 5 or 6 and believe me they don't wonder how i am doing.
    love to all............chippercricket

    (paragraph breaks added by Prohealth Moderator to make it easier to read)

  2. Chelz

    Chelz New Member

    Chippercricket, I feel so horrible for you. The reason? I went through the same thing as you except the drug the doctor put me on was Paxil and antidepressant.

    Although I was not taking nearly as much as you were, this drug was a total nightmare. I, like you, had the problem of my periods stopping as well. You didn't mention any weight gain from the Lyrica, and I hope you didn't gain a lot from it as a lot of people have. I gained 60 pounds from Paxil and another 40 pounds from Elavil (another antidepressant).

    I was about 34 years old at the time (I am now 46) and my periods just ceased. Then in about 3 months, I would get one and it would last about 3 weeks straight. The PMS was horrible as well. I kept going and going and going to the doctor to find out WHY my periods were so messed up, when before I took this drug, I had very normal periods.

    I was tested for prolactic levels, hormone levels, I had about 3 transvaginal ultrasounds and one doctor wanted to put me on Provera to start up my periods again. I said no, no more drugs. I went on the internet and found out that Paxil and so many other drugs can cause a woman's period to go haywire.

    Also, the withdrawal was so horrendous I wouldn't wish that on my worst enemy. Because of my extreme weight gain, loss of periods, hair falling out, and I knew it was these drugs that was responsible, I held on very very tight and did not ever go back on them, no matter how bad the withdrawal was because if I did, my weight would have increased even more and my periods would never be normal again.

    When I finally went through all the withdrawal including the shakes, headaches, hot and cold flashes, excessive anger, crying, zaps going through my head, nausea, etc. my periods went back to normal, which took only 1 month to happen. They have been normal ever since, actually, at my age, you would think they would be now screwed up, but they are not.

    You and I both learned the hard way, and yes, doctors do treat their patients like cattle, like you said, I feel so horrible for you because those days of withdrawal, which lasted for at least 2 months, were I felt, literally hell on earth. That was back in August of 2000 that I got off those drugs, and never looked back.

    It was such a horrible existence, if I took another Paxil I thought, maybe the withdrawal would go away, but, on the other hand, my body was so damaged that I just had to bear it. Either way I felt doomed. Taking it was bad, not taking it was bad, as far as the withdrawal goes.

    Like you had said, we have to be more involved with our health care. I don't even see any more doctors for my FM, I tried a few times, but these kinds of drugs are all they offer, and I will not go there ever again. None of the doctors who prescribed these drugs for me EVER told me any of the side effects, that was back in the late 90's when I didn't have a computer to do any research and frankly, I probably didn't think I had to, boy was I wrong. I was so sick from my FM, that I just "took" whatever they told me to take.

    I take many supplements, changed my diet, try to exercise, try to surround myself with positive, (yet supportive) people, quit drinking coffee or any kind of alcohol, deep breathing, muscle rubs, massage. THIS is what got me through, not the drugs. I keep hearing stores of side effects and withdrawals from these kinds of drugs, and it makes my cringe every time. Please be gentle with yourself. It has been a decade later for me, but I am much better, I hope the same for you. Sorry so long, Hugs Chelz.

  3. shanrg

    shanrg New Member

    Hi! Oh!, this is the kind of stuff that makes me craaazy--reading about how people are being given these drugs--like Lyrica--when it (this drug) has been demonstrated to only reduce pain by up to 50% in only 1/3 of those taking it AT MAX DOSES (300-450mg/day)--when the side effect profile is positively alarming--and almost all on this med gain weight and are sleepy, etc.--what kind of crap med is this??? I wouldn't be at all surprised if we find in a few years how dangerous this drug is--like so many others that have been pushed out in the last 20 years. (I could go on, but I'll stop (so help me...).
    I am not anti-med, do not get me wrong! I totally believe in pain medicine (like oxycodone and hydrocodone and hydromorphone--all of the oldies that have stood the test of time aaand are cheap) and the OCCASSIONAL "nerve pill" (anti-anxiety med--Xanax or Ativan--again, oldies and cheap aaand excreted relatively quickly)--and Adderall (again, with us for years and cheap) and also Wellbutrin (the only antidepressant I will take considering the discontinuation syndrome associated with the SSRI's (i.e., Paxil, Lexapro, Celexa) and SNRI's (i.e., Effexor, Cymbalta)--not to mention the almost universal (and stubborn to loss even well after cessation) weight gain and sexual dysfunction (which is also associated with the TCA's (i.e., Elavil, Trazadone) and the TeCA (tetracyclic antidepressant), Remeron)!
    I am so sorry that you have had to suffer like you have--as if hurting, etc., wasn't suffering enough!!!
    Yes, we can not just take what they proffer! We are offerred these "fibromyalgia meds" (like Lyrica (originally for the neuropathic (nerve) pain associated with shingles) and Cymbalta (an antidepressant, nothing more) for pain) out of MD ignorance (lack of knowledge) and/or because "it's the expected course of action"--despite that these have been shown repeatedly to help only a little--if at all--and, as well, cause a plethora of very undesirable side effects--when what we need is something effective for the bloody pain (an opiate, heaven forbid!), because if you truly have this disease you hurt EVERY day, ALL day, pretty much ALL OVER. And unrelieved chronic pain actually kills a body. Also, the relief of pain (and the ability to get things done and even socialize as a result of that relief) helps with depression--as does the opiate itself. I think it is awful--unethical--that one with this diagnosis is not given real pain medicine (if desired/needed). Yes, I am very aware that opiates come with their own issues--chronic constipation, decreased immune function and physical dependence with a terrible withdrawal when the dose is sharply reduced or eliminated (followed by a persistent funk for months following cessation). But. This disease is not going to go away--it is not curable!--and nearly all feel worse as the years go by (due to getting old alone--add arthritis (pain), peripheral vascular disease (pain), etc.). And which is worse--the side effects of that pain pill--or those of Lyrica or Cymbalta and unrelieved pain???
  4. voraciousreader

    voraciousreader New Member

    On my sixth day without Lyrica... only because my neurologist's office manager is a sadistic witch-it is his wife. I ran a few days short of medicine. Not sure why probably threw the almost empty bottle away. I have been on 200 mg. tid for a couple years now. Oh this has been like the worst flu ever from chills to profuse sweating, nausea, diarrhea, and insomnia. I cannot afford to miss work and yet I cannot work going through this. Plus that itchy pinchy neuro pain that feels like restless legs but all over. I have never had a litigious nature but I feel as I am being unduly tortured. Thoughts? Guidance?
  5. Nikki

    Nikki Member

    I also decided to take myself off Lyrica & Cymbalta @ the same time (with Dr.'s assistance).

    After successfully weaning off both drugs, I went thru a severe depression. I stayed in bed 3 weeks, until my husband (thank, God) dragged me to a Dr and finally got me to an outpatient facility. It literally saved my life. I attended 3 mos., 5 days/wk for 6 hrs/day.

    I was told that most people don't realized that Lyrica is a mood elevator . . . and getting off may cause some folks to sink into a deep depression. I would have never believed I would be one of those folks . . . I've had lots of down days . . . maybe even a week . . . but, this depression was the worst thing that ever happened to me.

    I think if I had been aware of that particular side effect from tapering off Lyrica, I would have monitored my feelings much more closely.

    I'm still heat/cold intolerant . . . and it can change on a dime.

    Torure is a good word to use. Be careful . . . monitor your feelings.

    Soft Hugs,
  6. kdeenak

    kdeenak New Member

    I was on a very high dose of Lyrica too. My doctor did not listen to me when I told him Topamax seemed to work well for me and I needed it increased. Instead he decreased it, and added Lyrica in increasing amounts. I also take lithium, so when I began complaining of severe memory loss and trouble speaking, he either blamed it on anxiety or lithium. He said I was on too much medication and ignored me. Finally, it got so bad, I sometimes forgot my phone #, age (I'm 36), would completely forget what I did yesterday, etc. He told me sometimes Lyrica has this side-effect, so I began a very slow taper.

    I did it over a couple of months' time, so it didn't make me too sick, but it was still hard. It didn't help my pain much at all. Another annoying side-effect that has not gone away is cold intolerance. My memory is still bad some days, but is better. Good luck to anyone who is on this drug or is thinking about trying it. It was not a good drug for me.