Life’s pace is vastly slower if you are living with chronic pain.
Anticipated outcomes from things like new treatments, explanations about causes of pain, pain research, realisations about personal ideas relating to my own experience all take months, years and even over a decade to arrive.
Yesterday was the day I finally received some closure about the wicked Lyrica.
There’s been a build-up of medication reporting this past year but none of it hit the spot like The Project’s report. I love the reporting on this show – it’s one of the few programs that brings me to the TV.
While watching last night, I got that bullseye feeling:
I’m not crazy!
How often does a person living with pain come to this blissful realisation? Not often enough I can tell you.
I spent so much time trying to explain my negative experience with Lyrica but I didn’t have the research or education to back it up. I was also a patient (‘what do we know?’ comes into it alot) and I was living in Lyrica fog hell.
But last night, I felt the relief with the fact that I was right about Lyrica. I was right to go back to my GP at the time and insist the recommended medication was not for me.
I still remember the conversation:
‘How are you Soula?’. My reply was, ‘How am I? I don’t know who I am, let alone how I am?’
I had shrunk to a portion of myself in the months I tried this medication. And the only thing I could use to describe my status was that I was in a small, empty can. I was in there spinning around and there was nothing else there. Nothing there able to help me out of the situation and nothing in there to give me hope. The radius of this small can was the extent I was able to think or plan – tiny!
I was also on Lovan at the time. What a cocktail hey?!
I don’t like to speak ill of health professionals (unless they’re working in the compensation system in which case their priorities deserve criticism). I do believe health professionals seek advice and what that fashionable advice is at that given moment is what a patient is going to get.
I got Lyrica. And Lovan.
And now looking back and remembering the nights I’d wake up thinking, ‘It feels like I haven’t taken a breath for a while’ and breathing in and in, and in and in to fill my lungs which felt empty and in order to start pumping my heart which was beating so slow, I wonder about the ways health professionals make their ‘informed’ decisions when administering medication.
Stats and data ain’t good enough!!! And listening to a patient isn’t quite valid enough.
The feeling that I had to motion my body to take a breath was a huge warning to me and needless to say terrifying. This happened many times.
I had other warnings like having to relearn how to cross the road, facing much confusion at the simplest tasks such as trying to sort produce at a supermarket, losing my vocabulary, losing all emotion, living in a scrambled mess and becoming depressed.
And the pain levels were going up and up and up.
‘Increase the doses if pain persists’.
Something didn’t seem right with that recommendation. Something wasn’t right with this medication.
In three swift months I stopped Lyrica and in another three I stopped Lovan. My withdrawal symptoms went on for almost a year.
Any positives?
Lyrica did initially fog the pain and I was able to learn which were my big-ticket pain pokers.
They were; weight, sitting and being in the car.
I also learned that sleeping was a great help in managing pain. Lyrica nailed sleeping for me. I was sleeping three extra hours during the day just to manage the medication’s living dead symptoms (which at the time wasn’t so bad because there wasn’t any reason to wake up).
Moral of the Med
Well, in my opinion you’d have to search deep to find any morals in this medication but there are three major morals stemming from my experience.
- Patients, please question medication (and start with far less than prescribed)
- Professionals, please listen to the patient, we’re not all made the same
- Lyrica works wonders for some but I would suggest people assess every possible thing they touch and do before taking any medication.
I couldn’t see the point of taking medication that not only caused so many side effects, but that also required the increase of dosage so fast.
That was my emergency signal for all medication I tried. It never impacted the pain for long. And all meds stripped me of my life and sent me plummetting into the hell den of depression – and I don’t have depression.
I did try Endep years later. I split a 10mg tablet and came up with a formula to suit me. I teamed it up with a nerve block and it got me to Italy!
https://www.drugs.com/interaction/list/?drug_list=
I’ve had some scary reactions to medications. Check for interactions drugs.com interactions checker
Thanks so much Michelle, I popped this great resource on the site today!
I was on the sister medication – gabapentin, which impacted my ability to grasp words (I’d look at a dish of diced cantaloupe and say “I’d like a few more of “those orange squares that I like.” That’s as close as I could get. When I was still working, I also had to tape my employer’s telephone greeting near the phone to remember what our department was called (“Good Morning, Inclusive Education – how may I help you?”) It was too many words to remember. And the weight gain. Geesh!!! Not me anymore.
Finally, I began getting more symptoms that these meds were supposed to be suppressing. I was so sick titrating off them. First, Cymbalta, which took a full year to stop with terrible nausea and horrific nightmares. Then topiramate. Then finally gabapentin. After stopping all 3 and keeping my narcotic pain medication, there was still no change in pain, but I could hear and think again. And speak. After 11 years of this and 3 enormous surgeries, I’m still waiting for the nightmare to end. No one should live in this kind of agony years on end.
Much love to you, Soula. What a warrior you are. XO
My darling Mickey… you’ve been through so much. The nightmare is well overdue to end for you. Lot’s of love to a warrior sister xxxx
I am now finally Lyrica free after 7 years. It did nothing to help my neuropathic pain. The side effects were debilitating and getting off it was sheer hell. I was on 600mg a day and was being poisoned. My previous pain specialist prescribed it and did nothing to help me with the withdrawals.
That is so great. You must be so relieved especially seeing the media too. Hard not to feel like a human trial… Hope you found a good team and are managing.
Anyone is able to report a negative experience with medications to the TGA. My local pharmacy were happy to help lodge a report, typing it up online, much faster than I could have managed!
The more records we create the better it will be for those who follow.
Thank you for letting us all know