Gabapentine

[Ascb]

Hi, I am taking gabapentine as I have nerve pain and numbness/pins and needles due to lumbar spinal stenosis. I've noticed that I have problems finding words when I'm speaking. It's so frustrating, just can't bring to mind the word I need. This happens fairly often. I was just wondering if other people have noticed this as a side effect?

[Bananas5]

Gabapentin is known as the 'marmite' drug. Together with its sister pregabalin.

It either loves you or loathes you and there is no half way.

What strength are you are and how long have you been taking it?

x

[Ascb in reply to Bananas5]

Hi 300 three times a day. I was taking it a couple of years ago for a nerve foot pain ( that I now suspect is to do with my back!) Then I stopped but started again with this diagnosis. I don't take it as prescribed. I take less than that.

[Sydney75 in reply to Ascb]

Husband had similar problem, can't tolerate higher than 900mg. Time release version Gralise had more side effects. Struggling to lose weight too. Reduced to 600mg felt it did not help that much.

[kev60]

hi, i was prescribed gabapentin in June 2018 and after 5 days I was hospitalised as they thought I was having a stroke (had problems walking , talking and thinking) had numerous tests was in hospital for three days. I was then discharged with no answers just I would get a neurology appointment within six months. As i could not walk properly my GP was not happy and got me an emergency appointment. From that I was diagnosed with FND (took 19 months). I did learn to walk and only bash into walls occasionally and like you I have trouble finding words (there in my head but come out as different words ie: banana), forget conversations half way through then my wife prompts me. I now have to tell medics that I had a reaction to gabapentin. I would strongly advise you see your GP tell them what's happening and they will either change your meds or stop it. As I said I only took it for five days and woke up and was unable to walk in a straight line( i looked like i was drunk). Although not cured I am much better and they say its something i will have to live with , so as i said before contact your GP and mention FND (Functional Neurological Disorder) as it may point them in the right direction. good luck and hope you get the help you need. kevin

[Ascb in reply to kev60]

Oh gosh that sounds awful 😕. Thank you so much for the information and also your well wishes.

[Bloneg]

Hi. I’ve only just joined up here to look for help with nerve pain. I’ve been on gabapentin since January. GP prescribed it, whilst I waited for my urgent referral to neurology to happen. Unfortunately I’m still waiting.

I’m on 700mg 3 x a day, but I started off on 100mg a day, so I’ve done a very slow and cautious build up. This is the maximum I can tolerate. Higher than this and I become ‘drunk’. I’m dizzy, forget words, and have problems getting my mouth around words.

Have to say, even on the 2100 a day, my nerve pain is only dulled. I have burning pain over both my legs, so the gabapentin allows me to tolerate wearing clothes. It’s not quite good enough to give me a proper night’s sleep though.

[Ascb in reply to Bloneg]

I think I need to increase slowly as I'm a bit scared of going straight into what's prescribed. What is your diagnosis, if you don't mind me asking?

[Bloneg in reply to Ascb]

No diagnosis - I’m still waiting for a neurology appointment. The waiting lists are very long just now.

[Ascb in reply to Bloneg]

Oh goodness, they really are. Hoping it comes round soon for you

[gordon292]

Some time ago I was prescribed Pregabalin and the doctor who prescribed this medicine told me he was confident it would help me. My reply was that I wish I could share his confidence. Well it did not do a thing for me and it obviously loathes me. Unfortunately for me after having an MRI scan and seeing the same doctor December 2nd 2023 he told me that because I was also on blood thinning tabets any medical procedure was unsafe. I have sciatica which is very very painful and have had to suffer it now for 4 years. Any way I was not satisfied with the letter the doctor sent to my surgery so I waited until a week into this year and then wrote a letter to my surgery asking if I can have a second opinion. I then received a referral to a spire hospital and on seeing a doctor there an injection is planned for April 26th. Lets hope it takes and even if only for a couple of months I will be happy. I have had 2 injections in the past and also had an operation but this was in 2016.

[Ascb in reply to gordon292]

That's odd about them saying they won't do the procedure due to anticoagulants. I am on apixaban and been told to stop taking it 3 days before my operation. Good luck with your injection.

[gordon292 in reply to Ascb]

Many thanks for your good wishes with regards the injection. Well had the injection on Wednesday April 26th and what I encountered I am still in a state of shock. The injection has not worked and I am not surprised at all. With regards the procedure I went through there was a lot of probing and pinching of the skin and as I lay there on my tummy I thought to myself this is going to be a case of hit or miss. In my case it has been sadly and to my dismay a miss. If I had known before hand what they were going to do I would have declined.. I have had 2 injections in the past and the procedure was carried out under the posh name, CT Guided nerve root injection lumbar. Both were successful. So it has been a complete waste of money for the NHS and also a waste of my time because I was at the hospital for 7hours15minutes. Not only that but I am in more pain than before this latest injection. Once again thank you for your best wishes.

[Ascb in reply to gordon292]

Omg I'm so sorry. That's sounds awful. What on earth did they do differently this time? Can you ask for your medical records to find out why?

[gordon292 in reply to Ascb]

As I explained they just made a mark on my back and when in the operating area there was a lot of pinching of the skin as if they were trying to determine where to inject. Where as with the method used in the past a small injection of x-ray dye is injected to make sure the position of the needle is correct. Because of my dismay with regards treatment I have been on Trustpilot and what I have found there is shocking. There is only 19% 5 star markings with 69% 1 star. The remaining 12% are 2,3 or 4 star. What is also interesting is unlike the Nuffield hospital group Spire do not respond to bad reviews. With regards my medical records I most certainly will try to obtain them. Take care and thanks for your interest.

[Trenholm]

I put that down to my age, 75.

[Ascb in reply to Trenholm]

😆 you are just a young one compared to my dad. He passed recently at the grand age of 93.

[Ascb]

It doesn't really help if I'm honest 😔

[DonutEater]

Hi Ascb I have exactly this myself I know what things are but finding the word is so difficult I get frustrated pointing at things or trying to describe something it looks like I’m playing charades sometimes.

[Ascb in reply to DonutEater]

That's me, haha. It's really annoying!

[DonutEater in reply to Ascb]

My wife is very understanding but even she gets annoyed when I mumble on and stop half way through a conversation and try to get the word out.

[Defenders]

Yes, I have noticed this side effect. I take them, 300mg morning and afternoon and 600mg at night. I have antibiotic damage, causing Peripheral Neuropathy in my lower legs and feet. I also have a severely degenerated lumbar spine and it’s for this reason that Gabapentin were first prescribed. They don’t do much for the PN. Isobel xx

[Ascb in reply to Defenders]

My lumbar spine is degenerative too. Apparently it can be genetic, which makes sense to me as my mum and two sisters had/have the same. Goodness, which antibiotic caused so much trouble for you?

[Defenders in reply to Ascb]

The antibiotic was Ciprofloxacin, so I must not take any medication in that large family of drugs ever again! It was prescribed for Sinusitis 8 years ago. It also attacked the tendons in my legs , so walking is a problem.

[Ascb in reply to Defenders]

You poor thing! It sounds horrendous. You were allergic to it without knowing until you were given it? Terrible experience

[Sydney75 in reply to Defenders]

Sadly they use to give Cipro to infants for ear infections. Now must be over 18 in US. Causes spontaeous ligament tears class action lawsuit too

[Defenders in reply to Sydney75]

Thanks for your reply. No chance to get a lawsuit here in 🇬🇧, no lawyer will touch it. Big pharma pay for the NHS! I’ve completed so many Yellow Cards (informing the MHRA of severe side effects) that in the end they told me not to contact them again! Cipro has given me Peripheral Neuropathy, Achilles Tendonitis, Axonal Sensory Neuropathy, Tinnitus and dizziness. I call it ‘the gift that keeps on giving’. It even caused Gulf War Syndrome! Keep well xx

[Defenders in reply to Ascb]

I’ve been told by a Spinal Surgeon that mine is genetic! My mum had it but it was never diagnosed, she had same symptoms as me. The same Spinal Surgeon pointed out on my MRI, that two of the vertebrae in my lumbar spine had fused together. He said this was a good thing, people have ops to have this done!

[Robinsoncruso]

Ascp, I took Pregabalin for sciatica made no difference!! My legs became uncontrollable and I stopped taking it quickly. I have found the best thing for sciatica is regular back stretching exercises to open up the back as recommended by my physiotherapist. Tony

[Ascb in reply to Robinsoncruso]

Thanks Tony, once I have had the operation, providing it goes ok, I will have invest in some physiotherapy to strengthen the muscles in my back.

[1vern0n]

I was prescribed Pregabalin for my spinal arthritis after other meds didn't work and my GP increased the dosage gradually. My husband noticed that I had developed poor memory recall and concentration. Then, I experienced an "out of body" feeling while shopping, I couldn't fully recall the trip and felt unsafe driving so I decided to wean myself off this drug with the consent of my GP. It's such a shame that different people have different reactions to drugs.

[Ascb in reply to 1vern0n]

Sounds very scary. Yes there's such a varied response to the same medication

[Mitch48]

Hi there,

I’m sorry that you’re suffering which procedures are you having for spinal stenosis?

Foramenotomy, Laminectomy, Discectomy & fusion perhaps?

I’ve had spinal injuries for 19 years and Gabapentin is a drug that I have taken for nearly that length of time. Gabapentin does work but I am on a raft of meds (Fentanyl, Oramorph , Baclofen, Naproxen, Duloxetine etc) and I STILL have breakthrough pain. I’ve had cervical & lumbar surgeries and numerous procedures within them - the latter for a couple of rare conditions, Impending Cauda Equina & Spondylolisthesis and have many symptoms that affect my entire body - I kid you not. My mobility is worse now and I use a wheelchair for distance. I have Cervicogenic headaches right down to problems with dexterity in my upper body etc along with problems with muscles, nerves, sitting & balance etc in my lower.

Gabapentin whilst being a good drug in my eyes has lots of side effects that are hard to tolerate, mostly the ones affecting cognitive function, I struggle to concentrate & have difficulty with brain fog whereas I cannot find the word/s that I want to say! It is very frustrating, this is the drug that stopped me studying at degree level over a decade ago & im wondering whether to try again ? I’m on 2700 mgs but have been on the maximum dose of 3600 mgs. Although Pregabalin was introduced, I put weight on very quickly with it & that was without eating more but a further slowing of the metabolism which Gabapentin does also, so I came off of it & back onto Gabapentin.

It’s very easy to forget how much pain you were in before you started a drug when it actually starts to work. I’ve titrated down drug amounts to discover which doses are the lowest maintenance dose possible for me. Nerve pain is horrendous - especially the electric shock type pain which gives no warning and “attacks”part of your limbs - this is not the more regular burning nerve pain that shoots down the nerve path, the former is related to advanced arthritis & nerve injury.

Good luck!

Mitch

[Ascb]

Goodness you have had a lot to deal with. I had laminectomy a couple of days ago, as the cauda equina nerves were clumped together and you'll already know the concerns about that.

I don't doubt that there will be further problems with my spine as it is degenerating and I do believe that once you've had one surgery, you'll likely need more.

But that's not to think about now, for now I'm just concentrating on recovery from this.

I was offered pregabalin, the weight gain issue concerns me as I have struggled to control my weight with various degrees of success for years. So I'll stick with gabapentine for now and put up with the cognitive effects, even though this makes work very difficult.

[trishj46 in reply to Ascb]

have been on gabepentin eleven years for spinal injury and all kinds of nerve pain-----don't think its much good but cannot get off it! Tried everything and just made my issues worse. Just decided to stay on it! It does cause a lot of weight gain too. Some times you just can't win with meds!! Good Luck!!!

[Ascb in reply to trishj46]

Thank you. You're right, each medication brings its own effects, both good and bad. And sometimes you definitely can't win

[Suzie42]

I was put on Gabapentin last December I took it for 2 months, nerve pain in back and legs certainly improved but my brain went to mush. I came off it very slowly and my pain hasnt returned like it was. I've now been off it for 2 months and finally my head is clearing. I think this drug should be taken with extreme caution as side effects can be catastrophic. I started physio for back and legs and doing the exercises religiously daily have improved pain. I just take paracetamol a couple of times a day now.

[Ascb in reply to Suzie42]

I'm glad physio is helping you. I will start this once I've got the go ahead from my surgeon, I'd like to get back to swimming too.

[Suzie42 in reply to Ascb]

Yes swimming is so good for you

[Defenders]

I take Gabapentin and I too find it difficult to find words, so frustrating! 300mg 2 x a day and 600mg at night. It does help the severe pain in my legs for the degeneration of my lumbar spine. It helps marginally the peripheral neuropathy in my lower legs caused by the Antibiotic Ciprofloxacin. Isobel xx UK

[Konagirl60]

You may not believe me but what has helped my memory is using Lion’s mane mushroom powder ( ancient Chinese medicine ) in my hot drinks. I usually add it to cacao and almond milk. Delicious.