Pregabalin

[Kingsley09]

Looks like I’m going to have to take pregabalin again please somebody tell me they have had long time success with pain relief

[Bananas5]

Not in this camp.

Went to Fentanyl for 12 years. Then to Oxycontin for 2. Now reduced and almost off them.

And so we arrive to CBD...which is what you asked about the other day/

x

[Kingsley09 in reply to Bananas5]

Yes thanks for replying but I am limited as to what I can use as I’m on an anticoagulant and CBD oil thins the blood I looked into CBD oil also it can make your heart race andas I have afib I don’t want that this is a big problem for me having afib and being on anticoagulant it has limited what I can use for nerve pain relief pregabalin helps but I don’t like the side effects but it does get rid of the nerve pain but if I up it my body aches so at the moment I’m really fed up looking for something to relieve my pain but thanks for your import much appreciated

[etheral in reply to Kingsley09]

Pregabablin has helped my chronic neropathy for 17yrs at 75mg twice daily. I was up to 5 80mg oxcycontins daily and d after 3 tries got off the opiod ups and downs and withdrawal. Valium and carisoprodol helps get me through rough spots. I. also have AFib and found smoking cannibis helpful without side effects or getting me out of NSR. I am currently on dofetilide to stop my AFib.

[shortandround in reply to etheral]

Hi, I assume you are in the US ? No european doctor would prescribe 400mg of oxycodone a day for someone without cancer or end of life.

[etheral in reply to shortandround]

In Maine. Was standered therapy in 2000.

[Hidden in reply to Bananas5]

When i stopped oxycontin i went tbru it, it wasnt easy ut did it, felt better off of it, but i went too fast, i didnt stop at just the oxycontin i kept lowering 39mg oxycodones, 5 of them, i did them all within a month, my body took a hit, i broke out with a wild rash for a time and ended up with ringing, the good ole teninitus

[Coastwalker]

Kingsley look into a link between Pregabalin causing vitamin B12 deficiency (and same also with folate deficiency)

Anyone with nerve or nephropathy pain look into Low vitamin B12 or vitamin B12 deficiency.

Be aware that vitamin B12 often gets over looked and there is a grey area that will not be acknowledged.

Also check your vitamin D blood levels as I know both can cause Pain.

[Kingsley09 in reply to Coastwalker]

Thanks I do take vit b12 plus vit d

[Coastwalker in reply to Kingsley09]

Sometimes when we are B12 Deficient we need B12 shots, B12 supplementing might not be enough for some. (Not saying this is you Kingsley09, but for some it is not enough,) Also dose amounts vary as do taking the wrong type of vitamin B12 (some cannot convert it) and vitamin D too, I was prescribed 1000iu of D3 from a Doctor and it was a far too low a dose, only when I took a far higher dose did all my symptoms fall away overnight and stay away. Doctor did not even know vitamin D3 was connected to all my painful symptoms either, I found out by experimenting.

[shortandround in reply to Coastwalker]

Do you mind me asking what the evidence of D3 in pain is ? I’m Interested and can’t find any solid proof?

Also how can all the symptoms disappear overnight ?

[Coastwalker in reply to shortandround]

You might find it hard to find evidence out there. I can only tell you of how it affected myself and how I cured myself of several medical (self diagnosed) problems.

Well a D deficiency for me felt more like a deep bone pain, different to my Fibronyalgia/hypothyroid type pains and electric shocks I was having.

I had stiffness getting up out of chairs and bed, couldn't sit for long or stand for long without it hurting me, had lower back pain, hip pain, felt like I needed new hips, they hurt so much constantly back of my legs hurt, sciatica, restless legs in the evening, SAD/Seasonal Affective Disorder, felt very down in winter (bought a special SAD sun lamp)

I had such a long list of ills, I was too embarrassed to mention them all, (didn't want to be seen as a hypochondriac,) so only mentioned to my Dr my hip pain and bum pain (where I had to shift cheek to cheek to get pain relief,) Dr checked my hips and said nothing wrong ??? and that my hips were very flexible. I then mentioned my bum pain and Dr diagnosed me with a tailbone pain (coccyx problem, there is another name I cant think of) there are two types of tailbone pain you can get Dr said, mine was the type where you shift from cheek to cheek to get relief, Dr told me I would never cure it, just learn to live with it and prescribed me relief cream.

Only when I went back for another appointment complaining of walking oddly, similar to my legs starting to bow and stopping me from walking properly did I find out about my vitamin D deficiency with blood tests. I was prescribed 1000iu of vitamin D3 told it was a very high dose ???

I was really surprised all my problems fell away overnight, first I twigged on was when I climbed out of bed and just got out normally with no stiffness at all and I stopped in surprise, then I realized all the conditions I had were falling away, but a few days later they all came back with a vengeance. A member here on Health Unlocked said 1000iu was a mere maintenance dose, try 5000iu of D3, so I did I now take D3 with K2. All symptoms fell away again over night, (even my diagnosed tailbone pain my Dr said I would never cure) and all have stayed away, thankfully, but if I forget to take my D3 they can come back quite quickly and remind me to take my D3. Also I no longer need my SAD sunshine lamp as I feel far happier in winter now.

[MumofSam]

I’ve been taking Pregabalin for just over 3 years following spinal surgery. My consultant told me to get it for nerve pain. It has very much helped, alongside Tramadol. I don’t know how good it would be on it’s own, but I guess it would depend on what type of pain you’re taking it for. I haven’t found any side effects from it either. Hope it helps you.

[Kingsley09 in reply to MumofSam]

Thanks that’s good for me to hear

[makemepainfree]

I take 300mg if pregabalin for about 5yrs along with lodine thyroxine citalaopram diazapan longterm shortec all back and radiating pain in my legs have started going too pool doing light exercise and it is helping I hope weather stopping me from going at the moment

[stenosis49]

Hi kingsley 09, I take pregabalin along side amitriptyline for nerve pain caused by prolapse repair and a tot (mesh) for mild stress incontinence. thankfully my mesh was removed back in 2013 as this has now become the biggest scandal ever. despite this I remain a chronic pain sufferer but at its best they work for me. theres nothing I haven't been through or taken to get where I am today. I take 300mg in the morning and again at night more so at 4.00pm as after this time my pain begins to break through. good quality of life I suppose compared to the pain I was in. Hope you find some relief and as you have been on this before you will know about the weight gain.

[Kingsley09 in reply to stenosis49]

Thanks it is down to quality of life because when my nerve pain is bad I can do nothing

[Cb1963 in reply to Kingsley09]

Hi Kingsley09, I'm currently taking one 300mg pregabalin, twice a day, and nerve pain is probably the most intense pain that comes in all sorts of guises, muscle twitching, burning sensations, pins and needles to name just a few, I have neuropathy and have had these symptoms for Nearly six years, and the pains are just as bad as the day they started, and to be honest I'm fearful of trying any other medication as there would be cold turkey involved, I have lidocaine patches that I stick on my calf muscles as the burning is like nothing else I've experienced, and its constant, 24/7,365 days, so trying to get on top of your nerve damage will be a difficult journey, and I wish you all the best in your quest to be pain free.

[Kingsley09 in reply to Cb1963]

Thanks for you input on nerve pain I’m finding it helps a bit but I can’t up it past 100 mg a day because of side effects what is worrying me is that I’ve had almost every drug the dr can give me and this has been this has been the best upto now it doesn’t get rid of the nerve pain completely but at least I can get out and about when I take it , how long have you been taking it you may if you try another drug be able to go straight onto it if you are slowly tapering down from pregabalin and I went straight from gabapentin onto pregabalin the reason I had to stop gabapentin was I was so dizzy I had to hold onto my furniture to get about so perhaps you should ask your dr about doing that sorry for your pain it’s hard for other people to understand who do not suffer from this good luck

[Hidden in reply to Kingsley09]

Isnt pregabalin and gabapentin the same?

[Bea61 in reply to Hidden]

No..

[Cb1963 in reply to Kingsley09]

Yep sorry for not getting back to you sooner, I have had the gabapentin at the beginning, and had amatryptaline which I had horrible side effects, I really feel that the medical fraternity don't have anything else and I suppose they are waiting on the big drug companies to try and get a "new" tablet that really does do some justice to the pain folk have with nerve damage etc, and the weight gain is fairly impressive, so I'm on a double edged sword, I can't do the exercise cause I'm in to much pain, and then I got my own GP telling me to lose some weight, I've got a good sense of humour, so I went out and got a chocolate bar to celebrate, hey what a pain, pain is, cheers

[Coastwalker in reply to Cb1963]

Cb1963, pins and needles is top classic symptom of B12 deficiency as is burning and nerve/nerve damage/neuropathy pain. A good book to consider reading is 'Could it Be B12 Deficiency, An Epidemic of Misdiagnosis.' by Sally Pacholok. Or maybe go over to the PAS (Pernicious Anemia Society,) site here on Health Unlocked which is also for symptoms of B12 Deficiency and ask about your symptoms there. Many dont realize it can be all connected to prescription pills they are taking that lowers your vitamin B12 blood levels and which in turn can also cause some, gut issues. Not saying this is what you have but to consider and rule out.

Be aware that there is a grey area in the blood ranges of vitamin B12 that gets over looked.

[Hidden in reply to Coastwalker]

I do take b supplements, super b and uts in the multi too, used to care for seniors znd some took b shots for balance issues

[Coastwalker in reply to Hidden]

Can I ask what symptoms you have Michele007 ?

[Hidden in reply to Coastwalker]

Sorry I didnt notice i had a message til now, my apologies, i have nerve damage on the left and right sides of the s1 and the left l4, which gives me crippling disabling pain from my back down both legs to the feet, its unforgiving, i had 2 fusions in less than a year, and its still so so tender to the touch, i had 4 knee surgeries and last week i fell on ice and landed on both knees! Now here i ago again,,,i need a total knee replacement on the left so far, but i dont think i can do physical therapy on the knees again, i cant sit, stand, or walk very much, im having a really hard time, im in bed 23 hours everyday, i do force myself to take my little dog for a walk and push to stay out 45-60 minutes, after that im toast! How about you?

[Coastwalker in reply to Hidden]

So sorry to hear all this Michale007, must be awful for you to cope daily, Idea only - This may or may not connect with you, but might be worth ruling out.

Look into getting your vitamin B12 bloods checked, if the nerve damage and pain was there before your fusion, (anything to do with nerves or neurological pains check your vitamin B12 bloods,)

Surgeries, using nitric oxide (anesthesia,) can bring on low/deficient vitamin B12, which in turn 'can' cause degeneration of the spinal cord. Anything nerve/neurological from head to toe even walking can be linked to a vitamin B12 deficiency. All mentioned in Sally Pacholoks book 'Could it Be B12 Deficiency An Epidemic of Misdiagnosis'

Also consider getting your vitamin D bloods done too especially if you don't go out much in the sunshine. (vitamin D is called the sunshine vitamin) 85% 0f us here in UK are low or deficient in vitamin D. Sitting/standing/stiffness, walking pain can also be down to low or deficient vitamin D. (excluding pain that has been caused by an accident.) Vitamin B12 and D are often over looked and are not often checked. Always get bloods checked before supplementing vitamin B12 , because many people need B12 shots instead, and supplementing B12 beforehand will skewer the blood results and will make a B12 problem far worse and taking a B12 supplement would also be a waste of time.

[Hidden in reply to Coastwalker]

Thx for the info, your the 2nd person who suggested b12 here, i did get injured during spi al surgery, the surgeon burned 2 muscles and the nerves in them cant be reached for radio frequency ablation, they just cant get to it, but when i see my dr next time i will def inquire, its worth looking into and vit b12 which cant hurt, i do take super vit b which has 250%daily value, along with 2 lipo flavanoid before bed which is loaded with b1 6 12 and mostly 22 as well

[Coastwalker in reply to Hidden]

Tell your Dr you are already taking taking vitamin B12 before bloods are done, so they are aware, some need more than just supplements, they need vitamin B12 shots (injections) as supplements might not be getting into cells, but their B12 blood tests will look normal/OK, so will not treat you. Beware there is the grey area that gets over looked and taking folic acid can make your B12 blood results look OK/normal when they are not OK/normal. There is a lot to checking for vitamin B12, it is not easy to prove you have a b12 problem if you do have one that's for sure.

[Hidden in reply to Coastwalker]

Thx any advise is welcome, always good

[Cb1963 in reply to Coastwalker]

Yep I've had trouble with my stomach and yep i only found out through this forum that I found out my antacid tablet could affect B12, I'm really surprised that they anyone who's on long term omeprazol or something similar that can cause these problems aren't monitored by the nurse for a six monthly blood tests, as the nerve damage cannot be restored back to normal, and yet when I mentioned this whilst me asking to get this blood test done she didn't know this fact, so is it that our health professionals have to much already on their hectic schedules to get the word out regarding vitamin B12 deficiency, as vitamin D is now getting a mention in our local health centre I would expect there's quite a few "zombies" out there and don't have a clue why, ah well at least I understand now, cheers

[Hidden in reply to Cb1963]

Everyone on this forum sounds like myself, one issue causi g more issues,,what a consuming cycle of trying to figure out what we should try next

[Coastwalker in reply to Cb1963]

Yes far too many depressed, anxious, paranoid, suicidal, confused zombies and more out there who dont have a clue. I read many patient own stories daily and know well that B12 gets over looked or missed. It is totally shocking, because so many illnesses are connected to low or deficient B12, Cb1963.

[Juls143 in reply to Cb1963]

Mines the same too have had neuropathy 9 years now the burning is so itense wish was something for relief😣

[Hidden in reply to Juls143]

Im sorry you also have been in so pain for so long, i will say a parayer for all on this forum,,i thought i was alone and dealing with a rare issue , but im finding there are many out there, i just never knew of anyone personally

[Hidden in reply to Juls143]

Me too, ive tried everything and use a little of everything for nerve pain, pain meds, xanax, and lidocaine patches too. Never completely pain free except when im sleeping,,its not too too bad if im laying down til change positions,,but the minute i rise it starts,,,it stinks

[Cb1963 in reply to Juls143]

I didn't hit the " like "button for the pain your suffering, but an acknowledgement to your problems as well, yep it's depressing and tiring as well, and because it does not show any visual symptoms, sympathy is low on the ground, btw where is your main PN affecting you? Thanks

[Hidden]

May i ask how much you were taking, how much have you reduced, or how long has it been since u stopped?? I have stopped, its been very hard, but there is hope ahead

[Juls143]

I feel it dosent do much for me ;; take 200g twice a day ,,still at night the severe burning do u have this yea .hope works for u is any one else here on anything diffrent that could help..so many symptons

[Hidden in reply to Juls143]

I only took 300 mg at night, had harsh side effects, by the time i realized the side effects were from the nerve pain 2 years went by, lowering this med is hard and MUST be done very slowly, if you decide to not take it, plz plz dont just stop all at once,,,its been 37 days since i took the last dose and im still going thru a really hard time

[Hidden in reply to Juls143]

When i was taking the gabapentin i woke up every morning with severe withdrawals,,the gaba has a 4 to 7 hour half life which explains my taking it at bedtime only, i couldnt handle taking it during the day, i felt literally drunk when i tried, taking the 300mg at night helped me sleep and not have leg pain all night, by the time i figured out the wd symptoms wete from gaba 2 years plus had gone by,,,i jad to lower the gaba 100mg per month, it was the hardest drug to come off of , lowering pain med is a walk in tbe park compared to any neurontin drugs, at least when lowering pain meds its uncomfortable but it ends in 4 to 5 days,, gaba keeps going and gping for 6 to 12 months after the last dose, some people it can take a few years, if anyone would like to educate themselves of lowering gaba i can tell which site to google,,,but plz plz NEVER stop abruptly,,very very dangerous

[Hidden in reply to Hidden]

I had slurred speech, double vision, head pain (tender to the touch) lost my motor skills, was always in a fog like being high, increased pain everywhere, sometimes 1/2my body would be completely dead/numb, one time it felt like there was a air compessor on left side of my brain, it was literally vibrating hard and loud, boy that hurt, it lasted about one minute then thought it was stopping as it got lower then started back up, then it stopped again,,,i thank God that never happened again,,,before i weaned off i had chest pain, left arm pain, jaw pain, skipped heart beats additional pain in lower legs, constant swollen glands, ears ringing, panic attacks, fear, anxiety and more,,,all those symptoms stopped when i reduced and stopped finally

[Hidden in reply to Hidden]

,,i dont mean to make light of anyones pain by any means, but sometimes when we talk about it it may just help someone

[Hidden]

Kingsley have you restarted the pregabalin again yet?

[Kingsley09 in reply to Hidden]

Yes I have but I have decided to come off completely as it does help with my nerve pain but since I’ve gone back on it I’ve started aching all over again and my balance is bad so it seems that I have a choice nerve pain or muscle pain so it looks like I’m stuck with the nerve pain again

[Hidden in reply to Kingsley09]

Are you still feeling off, off balance, etc? Im still feeling it and i took my last dose 37 days ago,,pains on one side of my head, double vision and so much more,,this is one of the hardest things ive ever been thru, ive even lost motor skills and slurred speech, and sometimes half my body goes totally numb, craziest symptoms, there is a place to google,,,peoples stories of hell withdtawing from gabapentin which is pregablin and lyrica,, they are all same meds,,,plz be smart,,i feel better off this med, very strong med, even the armed forces in the united states have banned these meds( but still good enuf for us civilians!) Crappy pharmaceutical companies,,they have been sued for these and still market them

[Hidden in reply to Kingsley09]

Stick with being off of it, not worth it especially when u still have same pain

[Hidden in reply to Kingsley09]

How have u been feeling since stopping, any better? Its gonna take time, you will have good and bad days, out of no where i cry for no reason, its the craziest thing

[Hidden in reply to Hidden]

Im sorry i didnt receive your reply til now, im now at 60 days and still in a fog, craziest symptoms start up and then stop, sometimes for a moment, other times for weeks then end, i also cry for no apparent reason hete and there, one day out of nowhere i had high anxiety and panic attacks, thank god that only happened 1x

[Squire14]

I take 225mg of pregabalin in the morning and 225mg at night to help with epilepsy, as well as nerve damage in my left hand.

Unfortunately, I don’t see results, but my doctor swears by them. 🤔

[Kingsley09 in reply to Squire14]

I think they help with nerve damage but gave me to many other side effects your dr may swear by them but it would be interesting to know if he would take them himself I’ve worked in a surgery and Drs do give out lots of medication but a lot of them wouldn’t take them myself anyway hope they work for you

[Hidden in reply to Kingsley09]

No dr could possibly undersrand what we feel from coming off this med, nor can we fully explain it, only us people can relate to this, if it werent for you guys i would have lost it. I would have believed that this was permanent at this point

[Hidden in reply to Squire14]

Omg, ate you still taking it?