23 replies to this topic

[brockit79]

Hi Para-bods,

I am 15 months post injury T10 complete paraplegia. Pain is a big issue for (as it is for a few of you guys), I was wondering whether any of you guys stopped taking Amitriptyline; if so how?

I am getting side effects that I don't want, for pain it works well but my hair is thinner plus I just don't want to be on these meds. When I can I want to get involved in competitive sports; there is no room for Amitriptyline on this vibe.

I take 50mg at present, I tried before by halving the dose but it was too much of a decrease and it was a painful experiment, that was 9 months ago.

If you can offer any suggestions or comments or anecdotes I would be grateful.

Thanks,
Broc

[biggdoggpa]

Hi Broc,


Coming off of any pain med can be a nightmare for anyone!!! though i am sure some one will better answer your question did you ever try maybe staggering the dose like maybe 1 today then skip a day? the only reason i say this (and I'm not familiar with that medication) is it a time released medication? I'm sure there is another alternative some one will suggest good luck and your hair looks just fine!! begin to worry if it starts to look like Paul's!!!!!!!! lmao

[knightrider]

I'm like you Kel Le Brock, I don't like the side effects of Amitriptyline either, makes me like a zombie, but it's the only pain med that has worked for me, i've tried them all and this is the only one that has some effect.

Maybe you could ask your doc at the SIU to see if you can try a different med, there are a lot of types out there, but some do have horrible side effects. I did manage for years without any at all as i only get the "Strong nerve pain" a few times a day and know it'll soon go after 5-10 mins but those 5-10 minutes are unbearable I always say if the Japs could of used that kind of pain on a prisoner...they'd soon talk lmao. If it were constant i'd jump off a cliff lol. I don't mind the burning sensation in my legs and feet because its always there and have got used to it but that strong electricuting/blowtorch to the skin type... Meds are needed big time lol.

Maybe you could try what Biggdogg said, try taking them on alternate days or something until you can try a different med. No one should be in pain, SCI is bad enough without it!

[Edinburgh Colin]

Hi Kel,

You know I tried Amitriptyline for a while but hated the side effects so had to come off it, Trinny will probably pipe in or PM you on this bit I would try reducing it by 10 mg a week so over a month or so you should be able to get clean. You will also be able to gauge your pain as the level of drugs in your system reduces.

I went onto Gabapentin which worked well for me and I found after titrating up that a dose of 1,800mg/day was sufficient to cover the pain. I was on that for 6 months but after breaking my leg in June I had real problems with peripheral edema (swelling in my lower legs with fluid) which is a side effect of Gabapentin so I tried reducing the dose. Over 3 weeks I reduced it to zero and luckily for me as an incomplete of 2 years at that point the pain had changed. My blowtorch in the thigh and burning feet had almost gone, just a bit of pain in my feet which I thought I could cope with.

Unfortunately in the last month or so it has got significantly worse with both my lower legs, buttocks and a line across my back at he injury transition becoming hyper sensitive and by the latter part of the day extremely sore and especially my lower legs like they are bing attacked with a red hot cheese grater.

I have just in the last few days started to take Pregabalin (Lyrica) at Trinny's suggestion (and my Spinal Consultant but Trinny was first!!) and we will see but at a really low dose it seems to be working a little which may be enough to cope with it.

I know you want to be clean but here are a couple of other options you may be able to try even at very low dosages to get of the hated Amitriptylinene.

Good Luck and let us know how you get on, I suspect you're not alone!

EC

[brockit79]

Thanks guys,

Im going to reduce by 10mg a day until I'm off them. I love guaranteed sleep but weight gain and fine hair is a step/turn of the wheel too far. I want to come off Pregabalin too, the problem is that they work really well :/

K-LB

[paul1404]

Hi kes I have never took any pain meds, so can't blame them on my thinking hair, (more likely the wife & kids are to blame for that) but just my option any meds are a bit of a slippery slope , so I just double up and curse like f*@k! At least I know aI am still alive,!!

[edlee]

Pain is pretty individual. We each have our own,, and our own tolerance level. I try never to compare mine with others,, as I can't roll on their wheels. I know that my own has increased quite a lot in my 7 years,, from almost none to the point I find myself,, on the verge of opiates ( but not yet). Getting off any drug can be troubling,, both from physical withdrawal symptoms,, AND,, from the increased persception of the pain these drugs have been masking.

You can expect some pretty bad days,, while you get used to what the pain you have is like,, unmasked.

I hadn't heard of amitriptylene until this site,, nor of it's hair thinning side effects, till now. I know that gabapentin can also cause the edema,, but so can pregabalin,, if you read the literature closely. The only ones that seem to have the least side effects are the ones most addictive,, but the ones they have are even more insidious than bald spots.

No real help here,,, I guess I just needed to vent a little. I hope you have success in your sport of choice.
ed

[A trophy guy]

Titrating slowly is the best advice I could give. If halving your dose is too much of a dosage decrease, then tapering off by 10mg per every other day probably will give you the best chances of successfully coming off of that very troublesome medication. Good luck and keep us updated!

[brockit79]

edlee, on 26 October 2011 - 07:52 PM, said:

Pain is pretty individual. We each have our own,, and our own tolerance level. I try never to compare mine with others,, as I can't roll on their wheels. I know that my own has increased quite a lot in my 7 years,, from almost none to the point I find myself,, on the verge of opiates ( but not yet). Getting off any drug can be troubling,, both from physical withdrawal symptoms,, AND,, from the increased persception of the pain these drugs have been masking.

You can expect some pretty bad days,, while you get used to what the pain you have is like,, unmasked.

I hadn't heard of amitriptylene until this site,, nor of it's hair thinning side effects, till now. I know that gabapentin can also cause the edema,, but so can pregabalin,, if you read the literature closely. The only ones that seem to have the least side effects are the ones most addictive,, but the ones they have are even more insidious than bald spots.

No real help here,,, I guess I just needed to vent a little. I hope you have success in your sport of choice.
ed

Hi edlee,

I have found it helpful so thank you. I need to mentally prepare for this as I have tried and failed already to come off these drugs but my spirit is strong and I am focussed. One thing is for sure I'll not be winning any gold medals off my rocker on amitriptyline :/

A trophy guy, on 26 October 2011 - 08:02 PM, said:

Titrating slowly is the best advice I could give. If halving your dose is too much of a dosage decrease, then tapering off by 10mg per every other day probably will give you the best chances of successfully coming off of that very troublesome medication. Good luck and keep us updated!

Hi A trophy guy,

ok this helps too. I tried halving the dose back in Dec10 but it wasn't successful. I have come to accept that this will be a slow process but I am determined.

I will for sure let you guys know how the withdrawal journey goes and update you on my sporting endeavours!

Thanks a mil!

B

[Tatiana]

Ive no advice to offer but good luck with it Kell, im sure you will achieve yr aim...your a determined miss :-) xx

[Trinity]

slowly as possible is the key, it takes a while for a therapeutic level to build up of amitriptyline therefore you have to drop down even slower. My suggestion is to ask you gp for the smallest mg of tablets, I think it's probably 10 mg and then reduce you dose by 5mg per week so if you take 50 mg, try dropping down to 45mg for 7 days, if you don't feel like you can drop to 40mg after that stay on 45mg for another 7 days then drop to 40mg, then repeat down to 35 etc. If you struggle at any point then you can increase again by 1/4 of a tablet which would be 5mg. You may actually reach a point where your pain is adequately controlled and the side effects are no longer an issue in which case you're a winner! lol. I did something similar for pregabalin and managed to get from 600mg/day down to the rather odd and un-round figure of 475mg, which annoys the doctor as it's more than one prescription!

[Edinburgh Colin]

Trinity, on 27 October 2011 - 09:33 AM, said:

slowly as possible is the key, it takes a while for a therapeutic level to build up of amitriptyline therefore you have to drop down even slower. My suggestion is to ask you gp for the smallest mg of tablets, I think it's probably 10 mg and then reduce you dose by 5mg per week so if you take 50 mg, try dropping down to 45mg for 7 days, if you don't feel like you can drop to 40mg after that stay on 45mg for another 7 days then drop to 40mg, then repeat down to 35 etc. If you struggle at any point then you can increase again by 1/4 of a tablet which would be 5mg. You may actually reach a point where your pain is adequately controlled and the side effects are no longer an issue in which case you're a winner! lol. I did something similar for pregabalin and managed to get from 600mg/day down to the rather odd and un-round figure of 475mg, which annoys the doctor as it's more than one prescription!

Thanks Trinny, you just answered a question I was going to pose to you on pregabalin.


EC

[brockit79]

Trinity, on 27 October 2011 - 09:33 AM, said:

slowly as possible is the key, it takes a while for a therapeutic level to build up of amitriptyline therefore you have to drop down even slower. My suggestion is to ask you gp for the smallest mg of tablets, I think it's probably 10 mg and then reduce you dose by 5mg per week so if you take 50 mg, try dropping down to 45mg for 7 days, if you don't feel like you can drop to 40mg after that stay on 45mg for another 7 days then drop to 40mg, then repeat down to 35 etc. If you struggle at any point then you can increase again by 1/4 of a tablet which would be 5mg. You may actually reach a point where your pain is adequately controlled and the side effects are no longer an issue in which case you're a winner! lol. I did something similar for pregabalin and managed to get from 600mg/day down to the rather odd and un-round figure of 475mg, which annoys the doctor as it's more than one prescription!

missed this one. cool, thats what i'll do!
thanks trin

[dancin' johnny]

Good luck Brok.

[brockit79]

Cheers Dancin' is this what I can expect whilst I'm turkeying off the ami?

[Trinity]

Edinburgh Colin, on 27 October 2011 - 10:08 AM, said:

Thanks Trinny, you just answered a question I was going to pose to you on pregabalin.


EC

With pregabalin you may be able do it a little quicker as the drug takes less time to get into the system than amitriptylline. The smallest pregabalin comes in is 25mgs and as they are capsules it's almost impossible to go lower

dancin, on 27 October 2011 - 05:37 PM, said:

Good luck Brok.

brockit79, on 28 October 2011 - 09:39 AM, said:

Cheers Dancin' is this what I can expect whilst I'm turkeying off the ami?

It may well be Kel, I was cold turkeyed (is that a word?!) off it for a week and felt absolutely terrible

[brockit79]

Trinity, on 28 October 2011 - 02:55 PM, said:

Edinburgh Colin, on 27 October 2011 - 10:08 AM, said:

Thanks Trinny, you just answered a question I was going to pose to you on pregabalin.


EC

With pregabalin you may be able do it a little quicker as the drug takes less time to get into the system than amitriptylline. The smallest pregabalin comes in is 25mgs and as they are capsules it's almost impossible to go lower

dancin, on 27 October 2011 - 05:37 PM, said:

Good luck Brok.

brockit79, on 28 October 2011 - 09:39 AM, said:

Cheers Dancin' is this what I can expect whilst I'm turkeying off the ami?

It may well be Kel, I was cold turkeyed (is that a word?!) off it for a week and felt absolutely terrible

Trin,

It is a Brummy (the place you told me that you wanted to move to after your visit) colloquialism; yes 'Turkeyed' it means being slapped around the face with turkey giblets, presumably you mean the same.....

In rehab the powers that be stopped my meds (Ami' and Pregaba') after one night {*shudder} I was back on them. Awful. I'll go the slow way cold turkey can cold turk-off

[Edinburgh Colin]

If your going int Train spotting territory, stay out of Euan McGreggor's toilet cubicles!!!!

[brockit79]

Edinburgh Colin, on 28 October 2011 - 03:40 PM, said:

If your going int Train spotting territory, stay out of Euan McGreggor's toilet cubicles!!!!

ewwwwwww..EC how things could get oh so worse

[Edinburgh Colin]

brockit79, on 28 October 2011 - 04:26 PM, said:

Edinburgh Colin, on 28 October 2011 - 03:40 PM, said:

If your going int Train spotting territory, stay out of Euan McGreggor's toilet cubicles!!!!

ewwwwwww..EC how things could get oh so worse

Take it you've seen the film then, ha, ha, ha

[brockit79]

Edinburgh Colin, on 28 October 2011 - 04:30 PM, said:

brockit79, on 28 October 2011 - 04:26 PM, said:

Edinburgh Colin, on 28 October 2011 - 03:40 PM, said:

If your going int Train spotting territory, stay out of Euan McGreggor's toilet cubicles!!!!

ewwwwwww..EC how things could get oh so worse

Take it you've seen the film then, ha, ha, ha

I reckon most adults in the UK have or at least should have, a simply great fil-em

[Scorpio81]

I agree with the taking it slowly approach and was going to suggest pretty much what Trinity has - because they're tablets you can cut them in half into 5mg (either with a knife, or more safely with a nifty little pill splitter).

Cold turkey is just so rough, I would never choose to come off anything this way. I experienced withdrawal (from morphine, gabapentin and baclofen)unwittingly when I had a stomach bug and couldn't even keep a sip of water down, let alone my tablets - it was absolutely horrendous. That was kind of scary actually because it made me realise how used to the medication my body is

Before I started on Gabapentin about 3 years ago, I was on Amitriptyline, and I really hated it - like you say, I had that zombie feeling and remained in a bit of a fog for half the following day (I took it at night). I tried to take it earlier in the evening to try to stop the hangover effect, but all that did was knock me out way before bedtime, meaning I woke up too early! I only got moderate pain relief too, so I switched to Gabapentin and have never looked back - I find it really effective and have never had any horrible side effects (which is quite remarkable when you read the side effect list which is as long as your arm!)

Anyway, good luck in your mission to get off meds and into sports, that would be awesome

[brockit79]

Thanks Scorpio,

I take both groups of drugs (Amitriptyline and Pregabalin)I ran out of Amitriptyline a fair few months ago and took more Pregabalin instead as it was a weekend, that was a nasty memory which leaves a bitter taste in my mouth even now.

Hopefully from tomorrow I can start coming down to earth hopefully with not too much of a bump :/

[rjwheelz]

ohh that drug never did a thing for me except make my eyes bad and didnt help with sleeping either.