Pregabalin hell: Hi all. I just wanted to post... - Pain Concern

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Pregabalin hell

Stormtrooper4 profile image
8 Replies

Hi all. I just wanted to post about a recent experience I have had in relation to Pregabalin.

I was prescribed this drug for nerve pain on the 16th February (50mg so a very low dose) together with morphine. This helped initially with sleeping as I had been having a lot of pain during the night.

On the 6th March I had a procedure done at the hospital to treat my severe sciatica so following this procedure I stopped the Pregabalin as I thought 'well my backs fixed so I can stop the medication'. This is where the nightmare began.

By the Friday I was suffering from nausea, sweats, dizziness, upset tummy, awful headache etc. I just thought I had picked up a tummy bug and it would pass after 24 hours. Fast forward to Sunday when I had been constantly sick and unable to even lift my head, my partner phoned 111 and they sent an ambulance to assess me. My temp was sky high, I couldn't stand any light, I passed out every time I tried standing.

Long story short, I was going through withdrawal. Obviously I was only on a low dose so goodness knows what it would be like for someone on a high dose to stop cold turkey.

I had never been told by my GP that I couldn't just stop the Pregabalin and having only been on a low dose for about 3 weeks, I thought I would be fine.

My advice to anyone on Pregabalin that wants to stop DON'T do so without speaking to your Doctor first.

After seeing lots of stories in the press recently I can categorically say that this drug should either be banned or it should come with a clear warning.

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8 Replies
Madlegs1 profile image
Madlegs1

Sorry to hear of your experience.

Very traumatic.

Pregabalin is a very useful medication, and along with it's cousin, Gabapentin, is widely prescribed for RLS ( restless leg syndrome)

We would be severely disadvantaged if it were to be banned.🤕

I'm sure there is a clear warning on the patient information leaflet, not to stop the medication without first talking to your doctor.( As you advise)

Again, I'm sorry for your experience, but please don't throw the poor baby out with the bathwater!!💚

Good luck.

Emma2017 profile image
Emma2017

I was put on this drug after my first op as the pain had not gone. It was build up to the highest dose. After more ops I felt good enough to get of it but it took me ages to slowly get of it. It is very addictive and for a lot of us very difficult to get of it. I managed it without a Dr but it took a long time. I would never go back on it and have had episodes where I thought shall I but no if it gets bad I just use a dihydrocodeine which helps enough. So yes am with you there about the addictiveness. But also am sure some really benefit from it.

Cappo profile image
Cappo

hi I have been on the highest dose with morphine they even over dosed me for two weeks until they realised and a doctor rang me up panicking also amitryptoline backlefen co codomol just been put on statins high risk of heart failure so did a deal came off amitryptoline and baklofen pain is up a little so dare not come off pregablin as well had different meds over past 8 years been on this lot around 3 years no pain is manageable most days so I’ll stick at it for now

clare86 profile image
clare86

hi stormtrooper4,

Your GP should have warned you not to stop taking suddenly, and it clearly states this information in the drug leaflet which the pharmacy are required to provide you by law.

I hope your surgery relieved your symptoms.

Did you restart pregabalin or just stop after going through withdrawal?

It is a powerful drug and patients are being taken off this drug if alternatives can be found due to the side effects, and it also severely affects people with mental health conditions.

I have a severe spinal injury and been told three weeks ago that I will not recover from the nerve damage. I am working with a specialist pain team who can tailor a programme to each individual involving weaning off painkillers when appropriate and providing the safest options and doses.

If you can, get a referral to the pain team for specialist help.

People don’t believe in holistic approaches to pain, but I can tell you from great experience that things like Pilates and yoga, along with meditation and mindfulness does help to a degree, along with pacing yourself.

I hope things work out for you

Heman69 profile image
Heman69

it’s a horrible drug isn’t it I’ve been saying for years it should be withdrawn from medical use I’ve watched my wife on that medication. Her eyes where rolling about in her head I thought she had brain damage at one point so I made sure she was taken of it and made the GP give her something more suitable instead she now takes nortriptyline instead with no complications or health risk infact I also take nortriptyline myself and know it’s completely safe and stops any nerve pain.

Jaff1 profile image
Jaff1

I had the opposite. I was on pregabalin for trigeminal neuralgia and was on 150mg daily. Unfortunately it stopped working so I had to switch back to amitriptyline although double the dose of the first time around. I stopped straight away and didn't suffer any withdrawal symptoms. I have no idea why. It certainly shouldn't be banned. You should have been informed about possible withdrawals. Pregabalin took away my pain and i'm eternally grateful for that.

Smilesalot profile image
Smilesalot

Hi sweetie🤗🤗🤗.I understand withdrawals and I'm sorry no-one warned you about them. I'm moving to pregabalin as Gabapentin didn't help pain wise at all. I'm starting withdrawals from them..

The pharmacy and meds leaflet should have warned you

!!!

???

There should be green cards for all dangerous meds.

I hope you're feeling a bit better ?

I look up all new meds online and I didn't see anything saying the withdrawal symptoms would be so bad😭.

I got a card saying don't just stop steroids ?.

That was it. I'm the type of person who needs a full explanations. So smart idiot me stopped the after 2 years.

I swelled up especially my feet and legs.

Oh boy did I get a rollicking. Lol. They suddenly stopped all my meds😯😮😮😮😮😮😖😫. The Gp said I couldn't be trusted and wanted me in hospital ?? Wtf???

Anyway how are you doing sweetie??? You're reaction was severe and I'm glad you posted this to warn other people !!!

Hugs sweetie 🙂Dawn

deb25426 profile image
deb25426

I was on a small dose it took me about 6 weeks to come off it.. fortunately yep the pain management nurse advised me how to come off it .. I think I was on 25mgs x 2 daily

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