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Need to come off Pregablin - absolutely terrified.

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michelle99524
michelle99524

Hi Guys - this is my first post and i really need some help. I have been on 600mg of Pregablin for pain and GAD for 5 years. At first it helped and i could get on with life however the side effects are becoming unbareable. I have gained 4 1/2 stone in that time and i dont think it works as well as it did as i am sure my body is just so used to it now. The thing is over the years i have run out of this drug at times and i am absolutely floored by the withdrawel effects. I honestlt feel like its my last day on earth. I want so badly to come off this drug and i have been researching as much as i can how to accomplish this. I have read some heartbreaking stores of people struggling for not just days or weeks but sometimes months. I cant understand why this drug is handed out so readliy when by their own admission the companies are not exactly sure how it works. When i have the withdrawals i have no control over my body temperature, my stomach and bowels feel like they are fighting the worst case of food poisoning, my head is full of noise, my nose and mouth have terrible smells and tastes, my skin burns and tingles constantly, and sleep is so very far away. I really need to come off this drug and i wish i could turn the clock back and never take it. I am 42 years old and have never been addicted to anything in my lift - but despit only taking the recommended dose, i am horribly addicted to this. How can this even be allowed to happen. If you look at the rise in numbers of prescriptions being wriiten in the last couple of years its easy to see why the drug companies would never listen - why should they the money is coming in faster than ever. I am so consumed with is and i hate myself every time i put another tablet in my mouth. Could anyone give me some adivec about how to come off and whats the best way to alleviate the worst of the syptoms. I cant tell you hoe much i would appreciate some help.

0 likes, 9 replies

9 Replies

  • nstar
    nstar michelle99524

    Posted

    Hey, I'm so sorry to hear it's been difficult for you to get off Pregablin. I was on 275mg for about 2 years. One morning I woke up and all day I was depressed, had a migraine, confused, and it suddenly hit me I had forgotten to take my meds the night before. The side effects hit me so fast. Now I am down to 50 mg. The best advice I have is to slowly, Very slowly taper off. I mean cut 5 mg 2 weeks or even every month. I tried cutting 25 mg for about a month several times and felt horrible. Then I got back to my normal 275mg because I couldn't handle it. I too gained weight and hated it. However, it took so long (maybe 9 months for me to ever so slowly taper off) this way a barely felt the effects. My doctor told me it should only take a month total, she was wrong. These doctors don't know how addictive it becomes, I didn't even realize it, but my body sure did. Good luck to you and I really hope this helps.
    • michelle99524
      michelle99524 nstar

      Posted

      Thanks for that - some doctors dont beleive there are any side effects when coming off this drug - a fact that shocks and dismays me. If they dont know what chance do we have. I think thats the best advice to taper off as slowly as possible because i work full time and could not take the time off to deal with the worst withdrawals - and there is no way i could works when my stomach is contorting and the sweat is blinding me. The other thing that seems to be getting worse is my memory i can see the words but i cant get to them and its very fraustrating. My problem solving and decision making has also been dramatically reduced the long i am on them. Havent set a dte to start yet but probably the sooner the better really.
    • jessie2150
      jessie2150 michelle99524

      Posted

      Hi michelle - I think nstar has given really good advice.   I am now completely off Pregabalin (I was taking it for neuropathic pain), but crikey I had to do it very slowly just like nstar says, dropping 5mg for a couple of weeks at a time.  No harm in staying 5mg lower for even longer if you are coping OK with that dose.

      Although I am off it now I do now get nausea after food but expect that'll improve eventually.  I take fluoxetine anyway but I think stopping Pregabalin has made me very low so I have (temporarily) doubled the fluoxetine to cope!

      Take it slowly, it can be done and I am sorry to hear of all the awful side effects you are suffering I felt much the same while on it.

      Let us know how you get on. best wishes x

       

  • sophie33405
    sophie33405 michelle99524

    Posted

    Hi Michelle - I felt the same as you terrified to come off this drug. I was on 600mg a day for 2 years for interstitial cystitis. I was getting side affects affecting my everyday life (dizziness, blurred vision, weight gain etc) so decided to wean myself off slowly in January this year and I'm so pleased I did.

    My advice would be to stop researching online. I know everyone is different and people may experience side effects and some non at all but I felt reading all the horror stories about coming off this drug online automatically put me in the mindset that it was going to be tough and I was worrying myself. I stopped googling pregabalin withdrawal and reading people's bad experiences and I thought to myself I can do this and just tried to completely forget about it. I know this won't work for everyone especially if u do get lots of withdrawal symptoms but it's worth a go.

    I think it's likely that anyone coming off this drug will experience some negative withdrawal symptoms. I weaned myself off from 600 to 300 to 200 to 100 to 50 to 25mg a day over January to 1st May when I officially stopped. Since doing this I have lost all the weight I gained initially from what I gained with this drug, I dint feel bloated anymore, my ibs has improved, I don't feel drunk and disorientated anymore and my concentration is a lot better.

    Don't get me wrong there has been some struggles and I did have a few really bad days with nausea, pins and needles in toes, itchy skin, headaches. But got better each day. The only thing that's been hardest is difficulty I've found with sleeping since coming off these. But again this is improving weekly.

    I can get quite anxious which is why I found not looking online worked best for me. I signed up to this forum (it's great for advice and support) but have not used it since comptlely coming off the tablets which I think has helped because it's helped my mindset so I am not reminding myself daily about pregabalin. It's only now that I am off the drug that can totally move on from it and hope this advice can help you or someone else.

    Try not to worry focus on other things there will be bad days but it is very likely to get better smile

  • sophie33405
    sophie33405 michelle99524

    Posted

    Further to this I too had the memory/ struggle to find words issue when taking this drug - thus has greatly improved since coming off them.

    I think if you do it slowly enough and think positive you will feel a lot better and will be able to do this. Best of luck smile xx

    • michelle99524
      michelle99524 sophie33405

      Posted

      Thank you for that Sophie. I do understand what you mean about reading up on it as it can be very disheartening, however the flip side for me is that i also come across stories like yours and that gives me hope that i can do this too. The thing is the first time i ever ran out of these tablets i was actually treated for food poisoning my symptoms were so bad and it wasn't until about a year later when it happened again that i made tha connection and since then any time i have run out the syptoms return. I am also worried about approaching my doctor and she is not the most understanding person and i have a feeling she will want me to taper off quicker than i want to. The official line on coming off these is to do it over a week! There is no way i could do that and it goes against everything that i have read from people like yourself who have successfully came off these but did it over a matter of months and not a week. Really worried about how to approach this with my doc. Was your doc understanding with you and how did they react when you said how slowly you wanted to come off?
    • sophie33405
      sophie33405 michelle99524

      Posted

      I understand Michelle I came off abruptly last March whilst on 600mg a day for 9 days and I turned in to an emotional wreck. Really important u wean yourself of slowly. I saw numerous doctors whilst weaning off all didn't know a lot about the drug some said can wean off down a lower dose every 2 weeks other said do it slower. I talked to the drs about what I had read and stresses my concerns and said I wanted to do it slowly. So I started 600 to 300 for 1st month then 1 month on 200 then 1 month 100 then weaned off every 2 weeks after this 50 to 25 but stated on 25 for maybe 3 weeks. This is the hardest part getting down to say 25mg then after this became a lot easier. I suffer ibs pregabalin made my symptoms worse since weaning off in Jan I started an nhs diet called low fodmap diet this really helps with stomach trouble and could help u if u were getting food poisoning type pains x
  • michelle99524
    michelle99524

    Posted

    Hi Guys - well today was d - day for me i have just returned from an appointment with a different doctor that i expected and had booked. However - he was a blessing in disguise as he was familiar with people having terrible side effects and said the way i was planning sounded like the best idea. We are going to drop 50mg a month with the idea i set the pace - he says he will get stick from the practice manger over this (due to the cost) but he thinks given the severity of the withdrawels i have had and the fact i have to work all the way through these the best - obvously the dose and the length of timae may change - but we read the leaflet together which comes with the Lyrica/ Pregabalin annd it says one week which the docotor found not only funny that they could be so funny but also dangerous given the severe depression it can cause. But i have made the just onto the journey hopefully off this drup for like and i an really hopeful i can do it with the help of my new doctor. So nervous but exictied as well. Get in!!
    • sophie33405
      sophie33405 michelle99524

      Posted

      Wish you the best if luck Michelle smile u can do it! Keep reminding yourself u can and you'll definitely find the strength. Expect some bad days anxiety, depressive feelings, headaches, lack of sleep and tiredness , pins and needles but it will pass and as the months and weeks pass and your dosage lowers it will give u even more confidence and an even more positive outlook smile x
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