Pain relief and pregabalin : Is there anyone... - Pain Concern

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Pain relief and pregabalin

Kingsley09 profile image
40 Replies

Is there anyone out there that has been on pregabalin for a long time and has been ok on it as I’ve gone on it and it’s all the bad reports on what it does to you especially your memory and speech problems that are worrying as it definitely helps my nerve pain and would like to stay on it

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Kingsley09
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40 Replies
Bananas5 profile image
Bananas5

We get more posts on here for Pregabalin and Gabapentin than any other topic.

If it suits you and you don't get those side effects then wonderful. Stay on it.

If you start to experience them then it isn't going to work for you.

There is no half way house and you don't get the choice.

So don't start worrying just yet

x

Kingsley09 profile image
Kingsley09 in reply to Bananas5

Thanks for replying the trouble is I think it’s a bit like plane crashes you only remember them and not the hundreds of planes that set off everyday and if a drug is good for your problem then I assume your not really going to write on here just to say I’m fine 🌝

Bananas5 profile image
Bananas5 in reply to Kingsley09

People do. I do!! No one listens but I always try to give both sides.

I remember when my David was prescribed it by pain clinic...years ago. Nurse told us if it doesn't work you will forget where you live

It didn't work for him and yes he forgot where he lived.

But many people do take it and successfully.

x

gindy profile image
gindy in reply to Bananas5

Hi there,

I've been on gabapentin > then> pregabalin for the last maybe 4.5yrs and I'm ok. I do get a bit of an allergic reaction occasionally with the pregabalin. It makes my top lip swell slightly, but a decrease in mg's for a couple of days (not a drastic amount as you need to taper this drug if you cut down or stop) and some O.T.C allergy meds stops it.

I haven't had any noticeable memory issues as yet, but I do keep a close eye on my meds as I have to take a lot for my illness.

If it's working for you then that's great, just stay aware for any symptoms that it's not a drug for you.

Kingsley09 profile image
Kingsley09

I thought even if it’s working for pain relief you still can forget thing that’s what bothers me as I’m a widow now and need to be on the ball now I’m on my own. Up to now I’ve been on it on and off 3/4 months because it definitely helps my nerve pain thanks for your reply is David your son

Bananas5 profile image
Bananas5 in reply to Kingsley09

My broken husband.

x

Kingsley09 profile image
Kingsley09 in reply to Bananas5

Sorry he’s suffered like that x

I have been on this for 5 years or so. It helps a lot with my nerve pain and gets me through the night. I'm not sure if it affects my memory/brain fog as I struggled with that even before I started taking it (pain and exhaustion also badly affects your memory)

I'm independent and am living by myself, I do forget little things a lot and names but never forget any important things.

Just see if it helps you and see what is better the pain relief or possible side affects (it affects everyone so different) just give it a few weeks before deciding if it's for you, most of the side affects will go after the first two weeks.

Kingsley09 profile image
Kingsley09 in reply to

Thanks for replying I am going to keep going for 3/4 wks then see my dr about carrying on the trouble is we all forget things sometimes as we age I’m 78 and I don’t want to blame it on the medication and as you say pain makes you very tired and you can forget when you are tired, I live by myself now my husband passed 3 yrs ago so we do need to be on the ball

trixiesmam profile image
trixiesmam in reply to Kingsley09

hi Kingsley i have been on pregabalin for so long now i have forgotten start date lol blame it on the meds ,i am getting frequently forgetful words,names, shopping and lots of little things but then i am in my 70s take things like that in your stride my love as long as they help your pain .have you tried physio they may be able to help hope you soon feel better

Frostielyme profile image
Frostielyme

Hiya, how're you getting on with it? I was on gabapentin for 3 years and now pregablin for 6months. I've suffered with major brain fog, memory problems and word recall before I started (5 years+) and it hasn't got much worse. It seems to fluctuate and I don't think it's pregablin making me worse. It does have a slight numbing effect but I see that as a positive when you are in constant pain!

Good luck

X

Cb1963 profile image
Cb1963

Yep been on pregabalin for 5 years, not had any memory problems or speech problems, but I'm a male in my mid fifties and I'm not to sure whether they have caused man "boobs" I have constant PN and unfortunately I don't think my symptoms have improved, so sometimes other underlying conditions can add more problems, recently been diagnosed with vitamin B12 deficiency and feel like I've ended up with a double dose, so try not to read to much into any long term memory problems if the tablets work for your nerve pain all is well and good, and eat a healthy diet and who knows you might be able to reduce your dosage, I'm currently on the 300mg one, twice a day, so it's a high dose and my symptoms are still the same, but I'm feared of reducing my dose as the pains I have were right at the threshold of pain, and I hope these tablets do what they are meant to do and reduce the symptoms, so I don't really know if they are working for me, cheers

Kingsley09 profile image
Kingsley09 in reply to Cb1963

Thanks for the reply what you have said has given me the confidence to keep going on with it

Don_in_midlands profile image
Don_in_midlands

Hello

I’ve been on pregabalin for about 5-6yrs and I am taking 225mg twice daily. As far as I’m aware, I don’t experience any of the usual side effects. As someone else has said, the fibromyalgia can cause brain fog, fatigue and forgetfulness. It can also cause forgetfulness 😂 hehehe

If you have really important things you need to remember, write it down - don’t trust your brain that you’ll remember it, because that fool is lying to you!

If the medication helps and you get no further side effects, then I would be happy, so I wish you luck x

Kingsley09 profile image
Kingsley09 in reply to Don_in_midlands

Thanks for replying I. Not even taking more than 75 mg so what you have said helps with my deciding to stay on it

dundeemanny profile image
dundeemanny

Varying levels for the past two years and I am right down to My lowest dose Ever, 100mg per day from 450mg

The brain fog is probably my worst side effect as I can be having a conversation and I just can't find the words I'm looking for.

I used to find it difficult to breathe when I was on gabapentin, it was getting to the point where I felt I was forgetting to breathe!

I personally thought it was an age thing but now I'm not so sure.

Joanne1972 profile image
Joanne1972

I'm also on pregabalin.....think for about 1.5 years and I've decided the pain relief is worth putting up with the side effects, for me fluid retention n sleepiness are the worst. Like others I have memory brain fog problems anyway so have got used to it. I also live alone and have managed to cope. I usually make a joke of forgetting things and people around me know this happens and so it's not been a big problem. Write things down n place somewhere you won't forget to look, if you see a programme you want to watch on tv, set to record it rather than think you will remember to watch it. Set out your medication in a pill box when your brain is alert. The days will remind you if you've taken your pills or not. Have a shopping list on the go all the time rather than writing it before you go shopping, as soon as something runs out add it to the list. Double check things like keys, purse, before you leave the house. Get a family member to remind you of birthdays or get a birthday calendar which you can use year after year.

I find my brain is best in a morning so I do important things then

There are days I'm fed up with the fluid retention n. Sleepiness but then I think of the pain in my jaw, shoulder n hip that pregabalin helped with and decide not to speak to dr. I'm still on the same dose I was started on, I haven't had to increase the dose. I couldn't cope with going any higher as I'm also on zomorph n those side effects

I'm not sure but I think I read somewhere that if you are struggling on pregabalin you can try gabapentin as I think that less strong or a bit different but similar drug. Double check that tho cos think I read that online.

Hope you find a happy medium

Jo

miked46 profile image
miked46 in reply to Joanne1972

I agree with everything you've said about coping with memory problems. I must remember to make use of your tips...thank you.

Mango07 profile image
Mango07

I have been on pregalblin for 4months, I have put a stone on that a side effect . I am sick and had rash etc... cut down the dosage what feels better, every drug is different to each person. If your getting on with then stay , but make sure you see you Gp regular to make sure your ok. It very strong drug . Good luckm

Kingsley09 profile image
Kingsley09 in reply to Mango07

Sorry it’s not so good for you x

Marky profile image
Marky

I have been on Pregabalin at various dosages for over 10years. Initial I put on weight, put am now stable.

Zelda007 profile image
Zelda007

Maybe I’m one of the lucky ones but I don’t get any side effects from it. I can vary the dose to suit the pain without anything. Unfortunately maybe it’s because I don’t find it very efficient. If it works keep going with it. Some folk find it great. My friend has taken this family of drugs for 15years, and through 2 pregnancies. She finds it wonderful.

If it ain’t broke don’t fix it.

Bramble71 profile image
Bramble71

Hi. My experience is with Gabapentin but I understand they're similar. I've been taking them for 5 years+.

They help the nerve pain a bit. I often think they don't, till I forget a dose!

I found, though, that they do affect my cognitive abilities & my memory terribly. After a long absence from work following surgery & increasing the drug, I couldn't even re-learn my own job. It was awful. I can't form patterns, remember names, remember much of anything really. I have since developed Fibromyalgia, I believe as a result of the trauma following that surgery. My GP won't send me to the pain clinic as the Fibro will always cause me pain. So I guess I'm stuck with the Gabapentin, morphine etc.

I can only advise speaking to your GP if you're worried at all.

morphalot profile image
morphalot

Hi I've been on it for about 7 years with no problems. Try it, you can always be weaned off it!

numps profile image
numps

Hi,

I`ve been on Pregabalin for 10 years now.I do have forgetfulness occasionally,but put that down to my age ! I also write lists .In fact they are all over the house ! It certainly helps with my nerve pain,but we are all different.Give it a go,but give it time to work.Good luck.

woodpecker94 profile image
woodpecker94

Hi

I have taken gabapentin for about 5 years at varying doses. At present I am taking maximum dose 2x600mg 3 times a day. I seem to have been lucky as they help me control my nerve pain between sacral joint injections and I don't seem to have had any major side effects. It seems everyone is very different with these type of medication.

Charliek3 profile image
Charliek3

Hi sorry to hear you are in pain...never easy to decide what drugs to use when we hear all the horror stories etc. There are even Facebook Groups screaming at folk on how bad these drugs are for us. Well I can only sing Pregabalins praises as it really has changed my life for the better. Osteoarthritis & Disc Degeneration all piled on top of a serious Lumbar injury in my teens. I am 47 now & for the past 2 years I had been sleeping on a two seater settee because I could not lay flat or any way in my bed as leg & back spasms had me driven mental. I was put on Pregabalin & an anti depressant called Duloxetine 60mg apparently often used for my condition along with Pregabalin. I did have memory problems & a little weight gain but have gone back down to normal weight now. Sometimes the memory, like finding words & the like come back but not bad enough to ever make me consider stopping Pregabalin.

Everyone is different & there are people that this drug is not for but I seem to be in the lucky category that it has helped immensely. I do all that list stuff like writing the shopping needed as soon as something runs out & I also tape all programs I enjoy in case I forget them. But I am back driving & Fishing with the kid's again...Oh & back in my own bed with the wife LOL...Always a plus LOL... I hope you feel much better in the coming weeks & do give the drug time to work & for your body to get used to it. I never believed I would feel almost normal again & although pain does raise its ugly head every so often I can cope with that...I'm paying now for a reckless youth lol

Kingsley09 profile image
Kingsley09 in reply to Charliek3

Thanks for you input I’m now on amitriptyline which is very similar to amitriptyline and it does help I cannot put it upto more than20mg and my dr would rather I kept to 10 mg but it’s not enough I can’t put it up as I have afib and amitriptyline effects that but if after a couple of weeks if 20 is not enough I will try taking the pregabalin again with it and hope for the best glad to hear you have found it helpful best wishes to you and your family

Kingsley09 profile image
Kingsley09 in reply to Charliek3

Me again how long have you been taking pregabalin x

Charliek3 profile image
Charliek3 in reply to Kingsley09

Since the beginning of October 2017...was started on Gabapentin but never touched the pain then Lyrica ( Pregabalin ), 100mgs X2 a day up to 200mg X3 a day over a fortnight I think it was...but I was feeling relief almost immediately with the spasms in my legs & back. I swear it was a miracle drug for me & I just hope I never get a tolerance as I think 600mgs a day is the highest you can take but Hey every year there are new drugs being approved. I read an Indian medical page here on the Net on every ill & none. I am fascinated with medicine & the search for cures for the weirdest illnesses lol.

littlebear profile image
littlebear

Hi, I have been on it for seven years. It has really helped my pain and especially with my deep nerve pain made worse by air movement (allodynia). Yes it causes me to forget words sometimes, and to struggle with spelling sometimes, but that's the price I have to take due to the severity of the pain and the relief it gives me.

However, pregabalin hasn't been enough on its own as I also need duloxetine, but both together really help me.

Kingsley09 profile image
Kingsley09 in reply to littlebear

I’m starting to take pregabalin and amitriptyline so as you said it has been helpful to you I’m hoping it will be the same for me as amitriptyline is very similar to duloxetine

littlebear profile image
littlebear in reply to Kingsley09

I used to take amitriptyline before both the others. It used to help me a lot but I later found I couldn't increase it when I needed to due to side effects. Good luck.

Kingsley09 profile image
Kingsley09 in reply to littlebear

It’s my afib that’s why I can’t up my dosage and why I’m adding pregabalin

littlebear profile image
littlebear in reply to Kingsley09

I understand. It was the side effect of chest pains that was the reason I changed.

Kingsley09 profile image
Kingsley09 in reply to littlebear

They won’t let me start on duloxetine as that also can effect your heart so they tell me x

Jaff1 profile image
Jaff1

I've been on it about 6 months now and haven't experienced any side effects that I have seriously noticed. It works and i'm currently reducing the dosage. I was on amitriptyline for 6 years but it stopped working. I don't know what I would do without these drugs.

Kingsley09 profile image
Kingsley09 in reply to Jaff1

I have had to come off amitriptyline as it has started to effect my heart and I have afib the pregabalin does help but I feel I need to up the dosage I’m on 75 mg at night and25 mg in the morning but it blurred my eyes and effects my balance so I’m worried about increasing the dosage plus my dr has written to the cardiologist at the hospital as she is not sure if it will effect my afib am seeing her on 6 th March I’m hoping she’s not going to stop it as I’m running out of options for pain relief

Jaff1 profile image
Jaff1

I hope they sort out your pain relief Kingsley and soon. My biggest worry is the lack of options in the future. I can't take carbemazapine because of the side effects so I hope they get some sort of breakthrough before that happens.

I hope you stay pain free my friend.

Poppy_Ann profile image
Poppy_Ann

Hi there, I have been on it for several years and have not noticed any new problems than I had before I went on it except it may have been partly to blame on my weight gain, I came onto this from gabapentin which caused me to have extremely bad headaches once I stopped to this the headaches stopped and it also reduced the pain in my back, I also take several other pain medicines as I broke my back in 4 places along with several other problems so I now have to take 5 other pain medications to keep it to a level I can cope with. Hope you find a way to cope with your problem. Regards Poppy Ann

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