Pregabalin

[Loulou199696]

Hi I am on 2x150mg Pregabalin for spins pain/depression/anxiety and substance misuse.

My eyes keep flickering/brain fog etc. and the pain in my back still hurts. (Scoliosis)

Anyone else out there that can help or any advice?

[Cb1963]

I'm on a higher dose, and unfortunately I still get intense pain, the neuropathy is constant, I get mirtrazapine prescribed for night time to aid for sleep, which is used more frequently for epilepsy, but because of the nerve damage it helps me sleep a bit better,unfortunately my downfall was alcohol, and that what has caused lasting damage, people don't realise that drinking can cause these problems,also I have B12 problems which double down on this condition and causes other problems, muscle twitching, eyes flickering,and tinnitus,so definitely avoid alcohol, and see how you get on, its not easy, and there are a couple of different medications out there that the doctor may try you on,good luck,sorry its not a to in depth answer, but sounds like you have only just started with your medication.

[Loulou199696 in reply to Cb1963]

Thank you for the reply.

I do take 15mg dissolvable mitrazipam at night time as well!

It doesn’t help much to be honest. :(.

Thank you thought x

[Cb1963 in reply to Loulou199696]

Yep I take 30 mg,mirtrazapine whole tablet non dissolvable, but I think I'm getting immune to them, been on them for several years, and I'm still up now,my sleep patterns are pretty bad, when I first stopped drinking I was ok for around 3 months, but all of a sudden things just changed,for the worse,my arms and legs would start throwing themselves around at night and then I got horrendous pains all over my body, shooting pains in my legs, feet,chest,you name it, and felt like red hot pokers coming out of my joints, this was the nerve damage showing, and its never recovered,its settled down,but I still have pins and needles in my feet, hands,and they constantly burn,and other issues, so I understand how you feel, give your body a rest,hopefully it may recover, try and eat a healthy diet, keep away from sugary stuff as this can affect the nerves as well,its difficult to understand this subject, even I can't get my head round it now,and thats nearly 8 years,maybe a trip to a pain clinic will help you, and they sometimes have better options, I was reading the other day that acupuncture was getting good results for neuropathy,but I don't know if that's available on the NHS yet, once again, happy to help.

[Hidden in reply to Cb1963]

Hi

I had it a few years ago on the NHS but I don't know if they still do it now. Take care Lynne

[Cb1963 in reply to Hidden]

It was only by sheer chance I caught something reading on the Manchester teletext service, saying that they had found that patients had found an improvement with acupuncture after receiving chemotherapy, which many patients end up with neuropathy, but I don't know how far or what parts of the body they were discussing, saying a 65% improvement was found in some patients, well that to me is quite a high figure, but obviously I don't know how many health authorities offer this service, and if the acupuncture has to be a particular type so before everyone goes running off for a quick fix,maybe some sort more information is required,but at least its another source of information.

[Loulou199696 in reply to Cb1963]

Unfortunately where I am there is no NHS, it’s free hospital treatment but a £42 gp and a £10 letter referral!

Thank you very much I’ll see if the doctor will answer the phone and refer me from there.

Thank you for your help x

[Cb1963 in reply to Loulou199696]

Just out of interest where abouts are you from then?

[Loulou199696 in reply to Cb1963]

Jersey

[Ritchie1268 in reply to Cb1963]

Interesting you have a B12 deficiency through substance use.

I was addicted to prescribed OxyContin for years. Been off it over 4 years now, but left me with sleep apnoea, (which has now gone since coming off it). Pernicious Anemia & Folate deficiency. Also peripheral neuropathy with nerve damage in my feet, burning, tingling etc etc.

I started self injecting hydroxocobalamin Xmas 2018 & now have never felt better.

Most Heroin addicts have a B12d also.

I refuse to take medication now & even though the pain I was given Oxy for is still there, I feel much better than I did when I was on it.

Take care

[Cb1963 in reply to Ritchie1268]

I'm not 100% sure if the drinking caused the B12 deficiency, as I've had numerous problems with my stomach when I was younger I had ulcerative colitis, a ruptured appendix, and then an internal stomach bleed after I had stopped drinking by then,and I'm on long term omeprazole which also can cause problems and ive had quite a few general anesthetics which I believe can cause an imbalance in the absorption process as the nitrous oxide gas causes issues in the stomach,but the neuropathy is definitely drink related,as for all the other symptoms they have been gradually 'creeping' up on me,but my doctor seems to ignore them,I'm on a tight budget and can't afford to self inject,thanks for your reply, have a good day, cheers

[Ritchie1268 in reply to Cb1963]

Omeprazole depletes B12.

Have you joined the Pernicious Anemia group on here? Loads of great advice on there.

I get my B12 ampoules from Germany, the last ones I ordered cost around 60 euros for 100 delivered. Needles & syringes from medisave in UK at around £20

[Cb1963 in reply to Ritchie1268]

Yes I m on that group chat pal,all interesting information, and often get a bit of a laugh, thanks for your reply.

[BadHare]

Do you take magnesium? Chelated or bisglycinate at bedtime with water on an empty stomach might help. Soaking in a bath with 500g Mg hexahydrate crystals is relaxing, & another way to absorb it. Mg skin spray is cheap to make & good for those who don’t have sensitive skin.

Try increasing your B12 intake with sublingual methylcobalanin, & if that doesn’t work, consider injecting hydoxocobalamin regularly. It’s important to ensure you have good intake of folate though this is found in lots of fruit & veg.

Also make sure to get enough vitamin D3 (cholecalciferol, not synthetic D2, ergocalciferol).

I’ve found these more beneficial for neuropathy (& general well-being) than toxic tablets with nasty side effects.

[Spacecat1]

Hi. I take pregablin takes about week to get used to them I had a fuzzy head every time I took one but eventually settled

[Pearce1940oscar in reply to Spacecat1]

How much pregabalin do you take a day and how long have you been on it I’m on a low dose 75 mg but it only helps a bit but it effects my vision and balance also the dr said you will have to keep upping the dosage as your brain gets use to it it’s the upping it that is worrying me so I’m wondering as I said have you been able to stay at the same dosage or have to had to keep upping the dosage

[Jpalm-hull]

I am on the max dosage for pregabalin but on quite a few others as well. Oxycodeine longtec, oxycodeine shortec, baclofen, clonazepam and quetiapine. The baclofen helps with any cramping and the oxycodeine is for for intense resting pain, pregabalin is for the nerve damage to help and the clonaZepam also helps stop the cramping. Iv tried numerous of the things mentioned in here but the best thing iv round for my complex regional pain syndrome (nerve damage) is nerve blocking injections in my spine and behind my back knee, next steps spinal cord stimulation surgery. The medication takes time before you adjust, I suggest trying to get yourself a pain specialist if your pain is still continuing. Hope you sort it!

[Loulou199696]

Thanks for everyone’s replies.

I have an appointment on the 28th with mental health. Only this doctor can prescribe me medication. So I’m hoping maybe he can help me get to pain clinics/ b12 injection etc.

Fingers crossed!

Will keep u updated x

[Jpalm-hull]

I’m also at the mental health team after couple of bad times in mental health units due to the pain and changes. Going from been a deep sea fisherman very active to using a walking stick and wheelchair at 29. Hopefully your mental health doctor can help push through trip to the pain clinic but there are a lot of people similar and we can all help one another if we talk. Hope you get sorted Lou lou

[Loulou199696]

I’m 23 and practically the same with scoliosis on top, I’ll phone my doc and ask for the b12 injection! 🙏

[Cb1963]

The doctor may only give you a B12 injections if your bloods are showing that you require this,so it may not solve some of the problems that you are experiencing,so perhaps you might need to request a blood test for this,they won't give you a injection without any form of further follow up I presume, I had to ask even though I had loads of symptoms,and was in a high risk bracket because of my previous stomach problems, and the stomach tablets I take and the amount of general anesthetics ive had cause of B12 problems, so it's not a guarantee that you'll get them,but if you do require them, hopefully that might ease some of your problems,but a pain clinic and understanding the body helps you work out things, and they sometimes have different options as well, so all is not lost,difficult for you to get your head round but the more information the better, hopefully this has answered some more of your points, good luck once again.

[Loulou199696 in reply to Cb1963]

Thank you x x

[Cb1963]

No problem

[Mia51]

They shouldn’t be putting you on pregablin if you’ve had substance misuse.Its just another serious addiction.my son ended his life because of this drug.Theres an American forum aimed at just how bad this drug ends up making you feel.You should check it out

[Loulou199696 in reply to Mia51]

Could you send me a link to it?

I’m really doing well with weaning off Pregabalin and it has helped in my temptations, I haven’t misused any substances for 2 months now. But I didn’t have a day on Pregabalin and I did feel awful.

[Mia51 in reply to Loulou199696]

Lyrics survivors usa

[Mia51]

I will send you the link when my daughter comes in.I never thought I would say this but I wish my son had just kept to other drugs,I wish I hadn’t stopped him.Addicts tell me pregablin is worse to come off than heroin as the medical profession don’t know how to deal with it long term

[mixedgrill]

I was prescribed the same medication and tryed it only twice i was seeing things that were not there brain fog ext was then put on gabapentin which works in the same way in pain but did not give me the nasty side effects

[Loulou199696]

Gabapentin didn’t seem to work for me unfortunately, now I’ve been on Pregabalin for a couple of months and not feeling the side effects now. But if I don’t take it when required I get side effects so sad now I can’t even get off it