Pregabalin Withdrawal Timescale and Symptoms

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I have been on 600mg Pregabalin for 2 years for muscle spasms in the back as a result of the muscles in the left lumbar region apparently distrophying.  

I have been warned about hyperalgesia syndrome and have been trying to self withdraw from the drug.  300mg per day to start with and achieved with fairly severe side effects but were alleviated within three weeks.  And now I have gone cold turkey for two of the most physically horrible weeks possible - intense pain, nausia, lethargy and foggyness, sickness and depression.  

Im sticking at it as it has to be worth it - has anyone else done similar with same quantities?

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  • Posted

    Hi Paula. Hope you can help me out with my situation. I'm 22 years old guy. On 3rd March 2017, I smoked hash with my friends and my blood pressure rose 190/100 mm of Hg and my condition was so severe that I even told my parents I'm about to die. These might be my last words you are hearing on phone. After 2-3 days of hospitalization, I got home. But since then I experienced different allergic reactions, muscle stiffness, high blood pressure, tingling numbness in genitals, severe pain in my right temple area, high palpitations, anxiety, insomnia, very SEVERE PRESSURE BEHING MY NOSE,FOREHEAD, CHEEKS. I started taking Pregabalin 150 mg per day along with Inderal 40 mg , Citanew 10 mg & Rivotril 2 mg on 8th of April 2017. I felt better now that I weaned off the whole medication properly and stopped taking it on 1st August. My conditon for first week was better. But now again I feel like my condition is same like before from where it started on 3rd March. Severe pressure behind my nose bridge, eyes, forehead & cheeks. Allergic acne on chest and back, itchiness, muscle stiffness (severe not able to cope with daily life), insomnia, wet dreams on daily basis, dizziness and much more. I'm just losing hope and want to suicide. I'm in my senior year of Engineering Course. I don't even want to go to university because I can't tolerate my pain and it stops me from my daily life routine. PLEASE anybody help me get out of this. I would be very grateful to him/her for the rest of my life. Your one kind opinion can save my life. 

    • Posted

      Hi shahroz 98724

      We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.

      If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.

      Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.

      If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.

      Kindest regards

      Patient

    • Posted

      DEAR SHAHROZ

      I REALLY FEEL FOR YOU AND HOPE YOU HAD SOME HELP TO COME OFF ALOT OF YOUR MEDICATION OR PREGABALIN.. TRY MEDITATION ,MASSAGE AND USE CHILLI RUB [CHEAPEST FROM THE CHILLI PEPPER CO., HOTTER THAN CAPSAICIN]. 

      FOCUSING ON YOUR ENGINEERING IS A MUST.

      GOOD LUCK, KIM X

  • Posted

    Hi, not with the same quantities,I have been on lyrica for about 9months. I was very reluctant to even try it (my dose is 25mg per night). Yes it does help with the pain even on that low dose,but whilst I have a good nights sleep,the following day it takes me a while to come to, I mean that I seem to have to get myself together,but during the daytime I have feelings of fatigue and wanting to sleep,and same in evening.Feeling Lethargic also. 

    This becomes rather embarrassing also so I decided that I would like to come off of this medication. and have been told whilst waiting to see my Rhuemi who put me on this medication to take the medication every other night instead of every night. I have to wait at least 4-6 weeks before my next app with Rheumi

    I have recently had shingles, and did not experience any pain whilst on regular Pregabalin, but pain has increased since reduction. I am also on reduction of Steroids

     

  • Posted

    My nan has been on 600mg pregablin for over 6 years.

    She started showing dementia like behaviour and been back and forth from AnE. The Dr there put the episodes down to the pregablin and horamorph.

    The Dr has told her to stop taking pregablin completely as well as cutting the horamorph. She is 1 day in cold turkey and is in a complete state!

    I feel so sorry for her she's in her 70s.

    • Posted

      I can't believe a doctor said that! They can't have read the advice and research. It is dangerous to go cold turkey from a high dose, especially when you've been on it for more than a few weeks. I hope your Nan is OK.

      To anyone else, there is a good reason why this drug needs to be tapered off, please follow the proper advice or you might end up in hospital. If you cut down too fast increase back up a little and go back to your doctor.

    • Posted

      I have just gone for my repeat of 500mg of pregabalin to find out I am no longer on it.

      Cold turkey for me on Monday.

      That’s coming from the psychiatrist office. We talked about me stopping it (for over 18months now) and this is how the nhs does it, not even in person.

      It was the same from the max dose of agomelatine, no longer available, cold turkey.

      I think they do it to prove a point, i’m going to do the cold turkey to find out if it is the medication they have been giving me that is making me sicker. It is the only way to prove I have the side effects, and not have “coincidental” symptoms.

      luckily I have support already in place (different charities) - I can only be this confident because I am not alone. .

      I am afraid in the case of mental health care, you have to have lower expectations. I don’t even get to see the same psychologist on my checkups, and therapy seems to be barred. 

      Suddenly having medication stopped is a common subject at charitable groups. unfortunately It’s not isolated incidents.

       

    • Posted

      Andrew, that is terrible. It goes against the information in the patient leaflet, and even NICE says taper although faster than the research and drug companies advise, especially if you are on a higher dose/have been on it longer

       - If they are not following NICE Guidance please put in a formal complaint.

      Meanwhile you say cold turkey from Monday - can you split your dose from tonight and taper a little at least?

      https://bnf.nice.org.uk/drug/pregabalin.html#treatmentCessationInformation  

    • Posted

      Andrew - my first reply to you got stuck awaiting moderation.

      I suggested you use whatever tablets you still have to try to taper off, as cold turkey from Pregabalin is not recommended by the manufacturer or the official medical bodies.

      I can't understand why doctors do this.

  • Posted

    DEAR SIAN

    I AM SO SORRY TO HEAR OF YOUR NAN, SURELY THE DR. CAN SUGGEST COMING OFF IT GRADUALLY IF IT HELPS, MY DR. ALSO SUGGESTED COLD TURKEY BUT FOR MY SON SUGGESTING GRADUAL WITHDRAWAL.

    [LIKE WITH ANTI-DEPRESSANTS  IT HAS A DETRIMENTAL EFFECT IF NOT WEANED, N MY GP DID NOT SEEM KNOW MY HISTORY AND APPEARED RUSHED WITH THE TELEPHONE APPOINTMENT].

    THE ONLY SYMPTOMS THIS PAST WEEK OF 200MG LESS OF PREGABALIN IS AN IMPROVEMENT IN MY SPEECH , WHETHER THAT'S DUE TO LESS MEDICATION, I COULDN'T SAY. I COME OFF A FURTHER 200MG ON SUNDAY 10/01/2018, WILL KEEP YOU POSTED.

    GOOD LUCK WITH YOUR NAN [HAVE ONLY POSTED SUGGESTIONS, AM NOT A DR.]. KIM X

     

  • Posted

    Hi Paula

    Are you still off of Pregabalin? I want to get off it too but I’m worried about the withdrawal and I don’t want to consult my GP over this right now. 

  • Posted

    FURTHER TO MY LAST POSTING, I MANAGED TO WITHDRAW FROM 600MG OF PREGABALIN, LASTED 2DAYS BUT WAS IN SUCH PAIN THAT I WENT BACK ON 400MG AND MANAGING WITH THAT AND MY CHILLI RUB. ALSO HEARD OF GOTU KOLA. HELPS ALOT OF AILMENTS WITH INFLAMMATION. I TAKE CAPSULES, MY SISTER GROWS THE PLANT FOR SALADS, SEEMS TO WORK.
  • Posted

    I had surgery on a herniated disc a month ago today and have been decreasing my lyrica ever since. I went from 450mg to 150mg in about 10days post surgery. BAD IDEA. I was pretty much bed bound with nausea, diarrhea, migraines and argh the itching.

    I decreased by 25mg every few days after that. I still get nauseous, anxious and turn into the worst sleeper for every decrease. Now only only 50mg a day. I'm just going to suck it up this week and get off it. 

    On the positive, I've lost the 6kg I gained when I was injured. I can think clearly again and that $40 a fortnight now goes in my pocket. 

    My advice is recover from surgery before you decrease or decrease slowly. That one week tapering guidance is for crazy people. I thought I had gastro for the first few days.

  • Posted

    i just saw this post, my hubby has taken 450mg a day and has for back problems also for four years, no plans of weaning off them but it is in our minds what if he ever has to,. he needs them though to work. How did you get on with it all, i realise it was a few yrs back, How are you doing? Didnt sound easy at allllllllllllllllll
    • Posted

      I just started coming down from 500mg. The best advice, based on research, is to come down by 20mg at a time but my GP won't do that so I'm stuck with 50mg decreases. Not sure if they don't want to issue extra prescriptions or if the 20mg one costs a lot more (the pricing structure is odd as some of the larger dose tablets are the cheapest).

      I'm really feeling it. I'd tried their advice of alternating days but that did not help at all, if anything I felt worse. So I dropped just down by 50mg.

      I have worse insomnia and noticeable tremors (no cooking for me, no sharp knives) and I itch. How I itch.

      It has been nearly two weeks so far.

      And my short term memory is worse than fibro fog. I'm wafting around casually forgetting everything.

      The things that keep me going are that my pain is no worse, I've lost a bit of the weight that had piled on, and the discontinuation symptoms are short-term; they will stop.

      My aim is to get settled on 450mg, wait till everything feel at least the same as before then try 400mg.

      But if I go lower I really have to nag my GP because under 200 the 50mg decreases apparently feel a lot worse and I'd want the 20mg tablets.

    • Posted

      oh that s ounds terrible to go through, do you mind me asking how old you are. Phil is 49 he is the one taking them. It is a cost thing for the decrease amounts i think, alwayssssssssssssss cost a lol.ours are covered by acc so free for him thankfully or it would be 500dollars a month . Phil is a trucker driver so weaning off would be baddddddddddddddddd as. dreading if ever that time will come
    • Posted

      Things got sidetracked as I was diagnosed as I came off the migraine drug as my next step - it wasn't helping much, reacted with my other drugs but also had to be stepped down. And then just after I started reducing that I was diagnosed as diabetic.

      So I stopped the migraine drug OK, apart from some nausea, and I've been concentrating on getting my blood sugar down by diet. Luckily the small reduction in Pregabalin (50mg) helped me to lose weight.

      So 7 weeks in and my blood sugar is in the normal range as long as I stay on a low carb diet (as recommended by Diabetes UK). And in spite of not doing even minimal exercise I've lost 22lbs.

      So I'm not making any decision about whether to reduce the Pregabalin further until everything has settled!

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