Hey Folks!
I’m writing the post that I’d been hesitating to write for over a year. [deep breath]
It’s been a pretty hard 14-month period, but also an amazingly great period. A dull twilight punctuated with glimmers of pure white starlight, and dark moments, too.
The Good
The family’s healthy—for the most part— we have a home, heat, food, running water and as much love as any family could need! I have exceptional friends, excellent work, beautiful yarns to dye and sell and one of the best business partners I could ask for.
The kids are beautiful and thriving, Andy’s doing well in her 2nd year at Earlham, Max is applying to various colleges (c’mon Hampshire!)
The Bad
Gerry’s health, which has fluctuated between very good and scary bad since his initial diagnosis with Multiple Myeloma in 2007, has been on a bit of a downswing. We’ve experienced worse, and as we experience the loss of friends with this disease on a regular basis we realize how fortunate we are, but it’s a constant mental and emotional burden. But our dealing-with-ongoing-chronic/terminal-illness muscles have been honed, and we generally have a pretty good attitude about it.
I can honestly STILL say that the lessons that cancer has taught all of us—mostly about ourselves and our love—are worth learning.
The Embarrassingly Bad
In November 2014 I tried to kill myself, and I’m still dealing with the fallout.
I wasn’t depressed (well, no more than usual, like my father and many other members of my family, I suffer from depression and treat it with prozac, eating well and exercise)
I WAS, however, on a drug that caused me to behave in a way that was absolutely foreign to me.
Lyrica Blues
In August 2014 I was diagnosed with Shingles, and it was a bad case. The pain was overwhelming, causing me to be in and out of the ER several times. As part of my recovery, I was offered Gabapentine. Having used it before for Fibromyalgia, I knew it did little more for me than make me dopey.
So then I was offered Lyrica, and the difference it made in my pain was outstanding. Not just the shingles, but my fibro pain as well. It was as if Annie from 5 years ago was back and I felt like a million bucks. Until I didn’t.
One evening, after a VERY silly and unimportant argument with Gerry (seriously, we argue as every couple does, this was NOT a big one, just silly…) I found myself sitting in the living room with a fully bottle Gerry’s pain medication that I’d picked up from the drug store that day, and without really knowing what I was doing, I poured a big handfull out and swallowed it.
It was surreal. It was almost an out-of-body experience. I still can’t quite believe that I did it. It was almost as if I were watching a movie of someone doing what I was doing.
Gerry was upstairs, the kids were out of the house, and something in my brain just said, “Hey, take a bunch of those pills why don’t you…?” So I did.
I told Gerry immediately. He didn’t understand at first, but when he got it, we were off to the hospital.
And here’s where it got interesting.
I expected to be questioned pretty thoroughly, perhaps admitted to a psych ward or something (the only thing I have to go on with this are Lifetime movies.)
But when I explained to the nurse admitting me that I was on Lyrica, and I had NO idea what happened, I just suddenly had 30 strong painkillers traveling down my throat.
And her response? “Oh, Lyrica. Yeah. We see that a lot.”
I was sent to an exam room where a doctor and nurse came in to give me charcoal to drink (I chugged two bottles in record time, good to see my college education paying off) and, when I explained to them what had happened, they replied in unison, “Oh, Lyrica, yeah. We see that a lot.”
They didn’t even have a social worker come to talk to me, they chatted, and on my promise to see my primary care doc the next day, I was released.
The next morning I did see my doc, we worked on a schedule to taper myself off of Lyrica, and I also saw a therapist for a few months.
Since Then
I had never had such a strong urge to do myself harm before that night, and I haven’t had an urge like that since. Amen.
The fact that I DID have that urge is frightening; obviously there was something inside of me that felt entirely overwhelmed and full of despair. But it was the Lyrica that crystallized those feelings, that made them solid and compelled me to act on them.
I haven’t discussed this with the world in general (until now – hi world!) My good friends, family and some of my customers have known, though. I’ve had several folks come forward to tell me they’ve had the SAME experience with Lyrica.
I’m not saying that Lyrica should be banned, but I do think that it can be a very dangerous drug, I’m proof of that. The entire time I’ve had Fibromyalgia I’ve worked hard to deal with that ongoing pain with diet changes and lots of exercise. My instincts in this were more right than I could know, I’ll continue in this vein as long as I can.
Why Now?
So why am I telling the world this story now? I’m not entirely sure.
I feel as though there’s been a dark cloud on the horizon since this episode in Nov 2014. As much as I tried to fight through it, I would wake in the early morning hours gripped with terror (unreasonable fears; financial ruin, Gerry’s demise, something happening to the kids, etc.) and it’s been a long road coming back from the fear surrounding this episode.
It’s just been in the past few weeks that I feel I’m finally passing out of this dark phase. I knew it would happen, I knew the light would shine again and I’d feel more like my best self. But it’s been a lengthy process of dealing with guilt for the fear I caused Gerry, anger at myself, and fear that I’d broken something that couldn’t be fixed.
But light is filtering through again. Many folks have written to ask why I’m not blogging as much, how come I’m not on Facebook as much as I used to be; this is the answer.
Last year I talked about my experience in front of a Multiple Myeloma group leaders at a conference . Lyrica is a drug that is commonly used within the MM community as shingles is often seen among these patients.
After I’d heard Lyrica praised over and over at the conference (and it IS a remarkable pain med!) I wanted folks to hear from someone who had personally experienced the, “may cause suicidal thoughts or actions” warning first hand.
As many of you know, I’m no shrinking violet and can speak in front of a room, but this was a terrifying experience; admitting that I’d done something so stupid and potentially harmful to my family. But I feel it was an important thing to do, and heard later from someone who’d had a similar experience in the group but had never talked about it.
So now you know.
I’d like to say, “Now let’s just forget this ever happened, and go back to life as it used to be!” and I’m trying to do that as much as I can. But I’ve stood on the cliff, I kicked a stone off and in an almost trance-like state, I followed it over. But I caught a branch on the way down and didn’t go splat.
The reality of this experience had darkened everything I did for months.
I’ve been adding touches of black to many of our ModeKnit colors (which works well in many cases) but finally I feel as though I’m able to see many colors as they really are, pure and bright.
As much as I understand that there will be periods of light and dark in the future, I’m feeling more hopeful about moving forward than I have in – well – 14 months. Thanks for sticking with me.
Thank you for your honesty , Annie.
As someone who lives on that edge between dark and light, hearing your story gives me an opportunity for a deep breath.
I applaud your courage, your intuition and your willingness to thrive.
Thank you again.
Annie….wow. Thank you for sharing a very hard and personal experience and more importantly thank you for not giving up on you! I hope people understand the bravery you have shown so we can have more open discussions like this so we can dea with many of the diseases head on.
Thank you Annie. I too was prescribe a medication that can cause (in 10% or so of users) suicidal thoughts. I was lucky enough to stop taking the meds, before i acted on these thoughts, (but my doctor is not as understanding and will soon be my former doctor)
What is needed is more people to speak out–(i have been offered lyrica for pain, and i have passed, the simple mention in the commercials , or “May produce suicidal thoughts” is enough for me to NOT want this med.
I hope you are able to continue doing all you do, with as few Rx drugs as possible, It is very good that you had people around you to get you to the hospital, and the help you needed.
My urologist talked me into trying Lyrica last summer for my interstitial cystitis and probable fibromyalgia. I was on it for a week and thought it was the most insane thing ever. What really got me off of it was when I started having trouble breathing, but when I talked with my internist, he flat out told me he never wanted me on anything from that family ever again. I would forget what I was saying in the middle of a word. I ran into walls. It was like something else took over my body and shut my brain down, and it was scary. It took a month for one week’s worth of medicine to get out of my body, and that in and of itself was scary. I think we don’t put enough warnings on that medication and I think doctors need to be very, very careful before they prescribe it. The only one who really, seriously questioned that prescription was my pharmacist, & I never second guess him anymore. In fact, I take his opinion more strongly than I do almost anyone else’s.
I am not surprised that happened to you on that drug. Lyrica rewrites the brain somehow, and it is just scary. I remember saying things while a little voice in the back of my head was wondering what on earth was coming out of my mouth. I remember not being able to do stuff that I had been able to always do, and it was just bizarre. I am so very, very glad that you were able to get help fast enough to stop that drug from taking over.
PS i just treated my self to a skein of Werks –and will knit some socks to remind myself to live in joy.
Thank you for sharing this, Annie. More people need to know that those warnings aren’t just included for CYA – real people, strong people like you, can be overcome with suicidal thoughts brought on by a medication. Thankfully, you weren’t alone and were able to get immediate help. The world would be a much poorer place without you. Your courage and willingness to share your experience will help others.
Blessings!
Thank you for sharing. Depression is so common an yet keeps being somewhat of a secret/shame. Knowing one is not alone is such a relief and helps to fight and try to crawl towards the light even when one can not see anything but darkness.
Your honesty is breathtaking. Thank you for sharing this part of your life with “the world”. Sending warm thoughts and joy to you and your family.
I went through a very similar experience, not with Lyrica, but with Prozac. I gone through a very traumatic event and my doctor upped my prescription. I was talking with a very close friend who was helping deal with the trauma. When out of the blue I found myself having very suicidal thoughts. He kept me on the line while he called for an ambulance. My son was at his grandparents place, so thankfully I didn’t need to worry about him.
They actually weren’t surprised as they had been seeing more of this. Thankfully I was released and my doctor weaned me off of it. I’m not in anything right now, but who knows I may need to be put on something again. I’ve been in dialysis for 3 yrs now and it’s been difficult to adjust….sigh.
So glad you are here and I know there is a light at the end if the tunnel. Take care.
Thank you for your bravery. Drugs are no joke. God bless.
Hi Annie – It’s unsettling (to say the least) when a prescribed drug takes over and causes one to do things so out of the norm. I had the same sort of experience with Lipitor – thoughts of suicide are not uncommon with it, but are never discussed. I’d never thought if suicide, and suddenly it seemed a rational idea, especially when another side effect (extreme muscle weakness) kicked in. I’m still looking for a new doctor I can trust because the prescribing doctor said I should just push through the side effects.
Fortunately, like you, I have strong support from my husband, and I’ve learned to read the very small print about rare side effects.
Your ability to share your journey is wonderful and appreciated.
Oh wow, I don’t see suicidal thoughts on the sheet for Lipitor. http://www.accessdata.fda.gov/drugsatfda_docs/label/2015/020702s065lbl.pdf
You should report that to the FDA. https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home
I had a bad reaction to an OTC drug once, but fortunately my brain knew that was the cause of the odd thoughts and I was able to ride it out. It’s scary.
Annie, Very close to the same boat. Currently feel like usual am hanging on.. was on an SSRI. That results in Serotonin Syndrome which drains the natural Serotonin from your brain, very similar tiebreaker cocaine use. The Doc took me off ; however,it has been a long line building my own serotonin back up. I am thinking clearer, but I am not as docile as I used to be.good for me, not so good for every thing else. Working hard to retain me. I really know where you are at. Thank you for sharing, know you really are not alone, write,message,call anytime, we live you,got your back.
Some where in my history I was a therapist if that counts.. you have helped me so much. You have my total love.
Lesley Wallace
Annie! Hugs, kisses, blessings. I had a similar reaction to a different drug. Happened very quickly–within five days, as I recall. I stopped taking the drug immediately and a day and a half later, I felt the cloud lift. So, a very compressed experience, but it stayed with me a long time (it was in spring 2013), and I can still feel the despair when I think of it. Xo
Prednisone makes me crazy. On a Prednisone high, the worst thing I did was buy $1,000-worth of fun fur on clearance. The crash afterward was horrendous and the doctor told me never to let him or anyone else prescribe this for me again.
I’m thankful yarn buying was the worst of the side effects. I cannot imagine having my brain change to the point where it was encouraging me to end my life. It’s terrifying that drugs intended to help us with one problem could cause life-altering side effects, some from which we might not recover. They really do need to do a better job of informing us of what we might be getting ourselves into, at the least, and to adjust these drugs so they don’t have those kinds of side effects at the best.
I’m very glad you’re OK now. (Would you like some fun fur? I still have plenty.)
I’m so sorry you had to/are going through this. I can add to your anecdotal evidence. My husband suffers with lots of pain – the cause has never been found. Doctors have given him the catchall diagnosis of fibro, but who knows. He was given Lyrica for his pain and after taking it once or twice, he had such dark thoughts he said never again. On another one he felt like he had crazy electrical currents running through his brain and stopped that one immediately as well. Another caused breathing problems. He never did find a drug to help with his pain that didn’t also cause super scary side effects.
I’m very glad to hear you are making your way to better days. Thank you for sharing your story! I wish you and your family bright days and all the best!
Annie, thank you for your courage not only to speak out at the conference but to blog about your experience. There are so many drugs with vicious side effects out there and some prescribing physicians aren’t informing patients of these warnings. I’m glad you can finally see the light at the end of the tunnel! Forgive yourself! Medications can make us do terrible things by changing brain chemistry.
Dear Annie, many of us have been in a dark place where it wouldn’t take much of a push… and drug ads on TV are not casual warnings. Normally we would cope, though it’s often grim and oh, how we would be grateful for some relief… like you. You have probably helped more people than you realize by telling your story – about what some drugs, Lyrica in particular, can do to regular people, not self-destructive people, not people who would normally consider suicide. Thank you.
Dear Annie.
Several friends with multiple myeloma made me stop, really read your honest post, and to decide I needed to reply.
I’m on an SSRI, and it HAS made a difference. But we are always aware my body may ‘do something stupid’.
I am thankful for you, your family, your honesty. You will be in thoughts and prayers.
MM is no cake walk. Hugs to your wonderful husband
How frightening! We really don’t understand nearly enough about the brain and these medications–not as much as some doctors seem to think, certainly! Thank you for sharing your story: getting the truth of your experience out there is so important, and you may never know who you help by doing it.
Annie, thank you for writing and posting this. It will bring both caution and hope to a lot of people who need them (::raises hand::). So glad to hear you (and family) are doing better! I am enjoying imagining you amid the beauty and colors of Colorado.
(We met just once, at Grace’s in NJ, so you would not recognize my name, but you are a memorable person!)
Colorado is lovely, I’ll be there in April. Right now I’m at home in Minnesota.
Well, white is a good color too, right? : ) (posted from my “new” home in Wisconsin)
Thank you for loving and trusting us, as we do you.
Happened to me with gabapentin, I turned into an angry murderous wild woman. My husband finally broke into tears and begged me to see my Dr after being on it for two weeks! When my husband told me about the last weeks, I was horrified. That wasn’t me!!!
I’m on a different medication now for pain and depression and it’s helped a lot.
I’m glad you shared your story. It makes me feel that I’m not alone.
I’m so sorry this happened to you and that you’ve felt guilty about it. Lyrica is one of those drugs that probably shouldn’t be on the market due to that particular side effect. It’s more common than many medical professionals realize.
Frankly, if you ever have a chance to get in on a class action about this, I think you should. Your family underwent a huge strain because of it and deserves compensation.
I’m proud of you for coming forward and am really happy you’re getting over the undeserved depression.
Annie, *YOU* didn’t do anything “stupid” to yourself or your family. The medication did something very dangerous to you and your family. *YOU* did the courageous thing by immediately asking for help and sharing what happened, both in the moment and every time you’ve told this story since. I am proud of you.
Well said, Judith. And Annie, I will echo the thanks that everyone else is expressing. Both of my stepchildren have been on and off antidepressants in the decade that I have known them, and I always, alwyas worry about the side effects — and then sometimes I think, “But their doctors wouldn’t prescribe them if they thought these patients were at high risk.” Your experience suggests that calculating risk is exceedlingly difficult. I am so glad that the darkness is beginning to recede. You have NOTHING to be embarrasses about.
Thank YOU Annie. Thank you for having the courage to share. I hope it helps, I think it will make you a bit lighter. Reading this brings up so many feelings and words for me, I get it. ❤
Thank you Annie ,
Last year my Docs had the brilliant idea to taper me off my anti anxiety drug (a good thing to do), and switch my anti depressant at the same time. While I never got to the popping pills or making a plan to do anything I got close. I am not sure what stopped me but I am glad something did. I had lots of people asking me if I was OK (even homeless guys would come up to see if I was ok). I told everyone I was ok, lucky I realized I wasn’t and got the Docs to switch me back.
While it is hard to admit we are human it is good to tell our stories.
Good Luck to you and your Family.
Big love, big hugs, big respect xxx
Annie, I am so sorry you had to go through this. I’m glad you are feeling better.
Thank you for this. I too was prescribed Lyrica for shingles pain (I’m one of the outliers who’s had shingles lesion flare-ups in the same location multiple times). Lyrica made me loquacious. I’m an introvert. I quit taking it within a week as I rapidly was unable to recognize myself whilst on it. The side effects were worse than the pain.
I just wanted to say I am SO GLAD you are still here.
Holy Cow! Thank God you came through that horrible exerience. I am so glad to have you in the world. Much love and light to you. Keep knitting!!!!!
Annie, I applaud your courage to share this with us. I wish you all the best and hope you’ll be in New York again before too long.
Elaine in NYC
How horrible for you and your family! And, as others have stated, you have nothing to feel guilty over, as it seems very unlikely that this would have happened without the drug. I am one of the lucky ones on Lyrica; it staves off most of the pain associated with my spinal stenosis. I don’t think that it has affected my emotions, but I appreciate more now than ever that it could. Thank you so much for your bravery.
There should be a more complete description of exactly what “suicidal thoughts” entails. I have always thought it meant getting to such a dark and painful place that ending one’s life was the only obvious answer. The drug-induced condition should really be called an impulse.
What you described, “something in my brain just said, “Hey, take a bunch of those pills why don’t you…?” So I did” is closer to the sort of impulse that occurs to me if I’m standing at a mountain or cliff edge — “hey, what would it feel like if I just stepped off here?” These drugs seem to give one permission to follow through. I wonder now if this is what happened to my friend’s husband whose successful suicide closely followed a radical change in his depression meds.
Thank you for speaking out Annie. I hope your words and others’ experiences will bring a clearer understanding of this drug’s side effect.
Dear Annie- Still waters run deep. Your depth is so full of amazing creativity and emotions- both tortured and inspired. Thank you for trusting the world with your journey. You are an artist that I admire and respect.
The struggle is real and the the reality is not always pretty. We navigate the best we can. Having watched your beautiful children grow up on your social media, you must never doubt how important you are to the future of our world. The medical world often offers a poison to treat a poison in an effort to ease sickness and pain. Historically this has played out before. We cautiously move forward. LOVE to you
Yup – the wonders of modern medicine. It works – until it doesn’t! D’oh. My dad was prescribed Gabapentin for neuropathy (due to heavy metal poisoning – chemo), and wishing 48 hours he and my mom caught that he was having weird/dangerous thoughts. He’s not on Lyrica, and it makes a huge positive difference. (we can all tell if he’s missed a dose). It sometimes makes you wish (for just a moment) that we all had “cookie cutter” physiologies and metabolisms, and that drugs and their interactions were oh-so predictable. Glad to hear that you’re on the other side of things!!
Thank you so much for writing about this!! What a horrible thing to have happened to you and how wonderful Gerry sprung into action so quickly!! It’s amazing how much a drug can affect a person and this should be emphasized by the doctors. I’m so glad you are “ok” even though I’m sure you are still suffering some PTSD after this. Take care of yourself, I know you do that but please do keep on top of it, it’s so easy to let ourselves go while taking care of others, and you have a lot going on. Thinking of you!!!!
Thank you for sharing a difficult experience and pushing past the shame it made you feel. Too often we don’t share our experiences and concerns because we aren’t sure how they will be received, we don’t have a clear understanding of why/how we got there or because by the time we’ve processed it, it just never seems the right time. I’m so glad you have loving family and friends, caring doctors and a willingness to seek therapy to help you move past a difficult and scary time. Thank you for being brave and courageous, for sharing with us. <3
Annie, Wow!! Thank you for being such an inspiration! Praying the light stays bright! Keep shining!
Thank you for coming back, to life and to the blog. I’ve missed your voice.
There’s nothing to be embarrassed about. Hope the year to come is filled with sunlight.
Sending best wishes for a continued healing trend. Things take time: doesn’t that suck? Your willingness to share this story is important and brave.
The days are indeed getting longer in the northern hemisphere even if there is not a lot of sun over here.
As others have said eloquently above – thanks for posting this!
It will definitely help people.