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I couldn't stand the pain any longer.

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I couldn't stand the pain any longer.
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stormonto57
21 May 2012 at 9:44PM
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I came off Gabapentin last November because I'd put a lot of weight on. I spoke to my Consultant and he said that Pregablin didn't put as much weight on as gabapentin and I changed over to that. Well I persevered with it until last week, I'd gradually increased the dose until I was on the highest dose per day, 600mg, but the nerve pain was there most of the time especially at night. My GP has put me back on Gabapentin (at my request) as I couldn't stand it any longer. i haven't slept properly since November and I've decided that I'd rather be fat than in pain all the time. A lot of people told me that Pregabalin was as good as Gabapentin but not for me. Has anyone else ever tried to change from one to the other? I'm at the point now in the change over where I'm taking a very low dose of both and it's awful but neccessary.

 

Lynne xx

hellMS
22 May 2012 at 9:33AM
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Hmmmm, I changed from Gabapentin to Pregabalin - weight gain yes, pain still there yes.  I'm living on the I'm so f**d nothing working to any acceptable degree 'so learn to live with it'.  Not a lot of help, sorry about that BUT the more you dwell on things the worse it gets.  Kick back against the misery/pain etc and do something anything BUT don't give up.thumbsup We are the coolclub, take care M

Candystripe
22 May 2012 at 11:03AM
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Hi Lynne,

 

Like you I was on Gabapentin, then stopped and tried Pregabalin.  On Pregabalin and Amitriptyline!  Weight gain and not a happy bunny.  Came off these and thenstarted taking LDN.  The weight dropped off me and the pain has lessened, and I mean lessened a lot.  Virtually no pain.

 

When they say these drugs don't make you put weight on they just make you feel more hungry.  What a lot of rubbish.  I feel better in myself all round.  No weight gain and less pain.  Although now middle age spread is coming!

C x

stormonto57
22 May 2012 at 8:48PM
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Yeah M it's impossible to 'learn to live with it', only people who haven't got this pain can say that ie doctors.

I've tried LDN C, i took it for 3 years but I never noticed any changes in my symptoms. I couldn't take any more than 2.5mg and i stopped taking it when I started to feel very nauseous after I took my nightly dose. I take Amitriptyline at night as well but it doesn't work on it's own. I know that part of my weight gain is probably middle age spread but not walking much doesn't help.

I'm on a very healthy diet now and I have started to loose weight very slowly, but at least it's coming off.

 

Lynne xx

kazza
29 May 2012 at 9:37PM
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Hi Lynne

 

I have changed from gabbapentin to pregabalin and finding that i am putting on weight all the time.Did you go to your G.P. and they changed you to LDN?Because if so I will go and see my G.P. to see if i can change to that.

Thanks

Karen

xx

whammel
30 May 2012 at 7:57PM
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Not sure ldn should be seen as a direct replacement, but no harm in asking your GP if you wish to try the stuff. It will probably help if you do your homework first, because a GP is unlikely to have much knowledge of the drug.

There is a GP’s information pack at www.ldnresearchtrust.org and I suggest you to take this along and leave with them to read.
 

stormonto57
31 May 2012 at 7:38PM
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My GP didn't precdribe LDN for me, he wouldn't because it's not licenced for MS. I joined E Med on the internet for £10 and they used to send the prescription to a Pharmacy in Scotland, then they sent me the LDN, it cost £20 for a 3 month supply. I've heard of a lot of people doing it this way. Not many GP's will prescribe it.

Well I'm back onto the dose of Gabapentin I was on before the Pregabalin, 600mg x 4 per day and I feel much better, the nerve pain has almost gone.

 

Lynne xx

kazza
31 May 2012 at 8:33PM
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Thanks Lynne

I really dont know what to do about it.  

 

You have gone back on gabbapentin and are not taking it anymore are you?

Karen

xx

 

 

stormonto57
02 Jun 2012 at 6:22PM
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Hi Karen

I'm not taking LDN any more it didn't agree with me but some people say they feel much better on it. I think it's worth a try if you can get it. My friends gP prescribes it for her but he's the only one that i've heard of. good luck.

 

Lynne xx

kazza
05 Jun 2012 at 3:47PM
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Thanks Lynne

I will ask my G.P.

xx

littlenell17
26 Jun 2012 at 3:37PM
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Do i take my normal meds of 1500mg gabapentin and 75mg pregabilin per day as im waiting for my first course of LDN. Im going through e-med and Dicksons as my gp was unaware of it. My ms nurse told me today when i asked if she knows anyone who has taken LDN she said yes but sometimes if you think a drug is going to work it will. make of that what you will. I am 46 and have PPMS its not nice folks and if this LDN does what it says on the tin and gives me the slightest improvement then what price could you put on that. Even if it does nothing i wish i was given a choice over a year ago when diagnosed. 

Snow Leopard
26 Jun 2012 at 4:25PM
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Hi Littlenell, not on LDN so don't know... but suggest you post as a 'new post' on everday living where you'll get a bigger response from LDN users (put LDN in the title).

Good luck with it. Yes lots of people swear by it. 

It's funny this thing about placebo effect. Medical people snear at it, but surely if something works because you think it's going to work then what does it matter? The point is if it works, it works. I don't mean to say that LDN works by placebo, but it's the same with anything. Surely the point is to find something that works and not be negative about the 'why it works'. Strange.

Apparently it's only in Western medicine they think like that. In Eastern traditional medicine they look at what works and don't worry about placebo effect.

Take care,

Pat x 

 

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