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Endometriosis UK
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Post op anti epileptic drugs for neuropathic pain

Anyone else on these? How are/did they work for you? I'm up to 300mg Gabapentin but on my period so that pain is overriding everything at the moment.

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Hi

I can't help much but am sitting on a prescription for these and pregrablin, I've been on a similar anti-epilepsy drug before for something else (high dose for 3 years!) so am waiting to see if I can put up with things enough for the pain to improve in its own time before I start taking the drug as I've really had it with taking drugs at the mo (other than painkillers). I'm at home and off work at the mo so it doesn't matter too much if I can't function 100%. Hope you're doing ok x

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I am a 67 yr old male and have been living with neuropathic pain for more than four years due to nerve severing during a major op for renal cancer. I tried Lyrica 75mg twice daily but it was not really effective so I went onto Gabapentin 100mg twice daily. It took a while to kick in but it was very effective for pain relief.

However I took myself off it because it made me a bit vague (could not remember to where I was driving). Despite assurances this vagueness would be temporary I spoke to a paralympian who has lived with this side effect for many years. I think this drug is very individual specific but give it time. I might even revert to 100mg at night so I can sleep. Good luck to you.

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Hello, they work well for me apart from for my night time pain. I'm on 300mg, three times daily. Good luck !!!

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Thanks guys!

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Hi Anna

I think its down to the individual patient as to how well these drugs work (or not!)

I was prescribed Gabapentin for endo pain and was optimistic of its effect but despite increasing the daily dose <every time I saw my GP or gynae consultant> it just didn't work for me. In the end I was on 1800mg a day but to no effect. At this point I decided the drug wasn't effective for my symptoms and stopped taking it with my GP's consent. I think I then managed my symptoms with painkillers and shortly afterwards began Prostap injections which were a lifesaver for me.

I hope you get some relief soon

Take care

Caroline, x

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Thank you Caroline x

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Hi,

Not sure about Gabapentin for Endo but my daughter was on them for a long time. She had a very rapidly progressing spinal curve and was on the waiting list for spinal fusion surgery. She took these for approx 6 months pre op and they worked very well for her. Her pain was very extreme tho (she bacame a hunchabck within 11 months!) and she combined it with other very strong meds too. Gabapentin is a very strong drug and needs very careful monitoring. Hers were issued from a pediatric hosp pain clinic and they used to ring every week to check on her. She started her dosage on 100mg and ended up taking 900mg. It can cause some loss of field vision whilst on them so careful monitoring at ur optician is req'd too. Generally a good med tho xx

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I had it and within two weeks was advised to take 1800mg, this for me was very strong and I felt like I was spaced out, I couldn't drive at all, I felt sick and dizzy and often fell over due to the dizziness and blurred vision. And even with all those side effects it never helped with the pain for me. I've heard for many people it does but personally my experience was bad, now I tend to try and get through the pain with all of willpower and breathing techniques similar to labour, when that doesn't work and I can't move I end up calling paramedics who are sick of seeing me cuz they know my GP won't help me anymore so I call on there help I times of desperation, not very often though. I hope they work for you and you dont get the nasty side effects, good luck.

Leya :) xxx

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I should have been more specific, it's not for my endo monthly pains (which I also use willpower and breathing to get through) but constant pain from my op where the surgeon left raw nerves after cutting out my endo. Anyone else used it for that?

I don't see how it could help endo monthly pains as that's muscle spasms. Some GPs are bananas.

X

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Hi Anna

That's exactly what I've been prescribed it for, I'm still trying to force myself in getting through the next couple of weeks without it as the consultant told me the post op pain will improve in its own time but the drug would speed it up, but looks like I'm going to have to back down! I saw a pain consultant privately who gave me the prescription, there's overlap with pain from nerve and muscle damage as I've been given it for both as they think my post op pain is muscle spasm with nerve damage, I wouldn't consider taking it for endo pain though!

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