42 replies to this topic

[123]

I've recently been prescribed this drug for severe upper back/chest pain and was wondering if any of you have had any experience of taking this medicine (good or bad - I need to know what I'm letting myself in for!). I'm particularly worried as I've had very bad allergic reactions to drugs in the past (temporarily paralysed by codeine once, years before my SCI). I tried tramadol initially, which was an effective pain killer, but had to stop it because I was getting a 'pressure' type feeling one side of my head. I'm just hoping I can find a solution to all this, as this new pain has diminished my quality of life even more. Any ideas??

Leah

[Edinburgh Colin]

123, on 19 February 2011 - 10:28 AM, said:

I've recently been prescribed this drug for severe upper back/chest pain and was wondering if any of you have had any experience of taking this medicine (good or bad - I need to know what I'm letting myself in for!). I'm particularly worried as I've had very bad allergic reactions to drugs in the past (temporarily paralysed by codeine once, years before my SCI). I tried tramadol initially, which was an effective pain killer, but had to stop it because I was getting a 'pressure' type feeling one side of my head. I'm just hoping I can find a solution to all this, as this new pain has diminished my quality of life even more. Any ideas??

Leah

I use it for nerve pain, taking it in the evening, I was taking 20mg but found I was sleeping well but really dozy in the morning, since cut to 10 mg and I seem much cleared in the morning and wake up more easily like I used to. A lot of the folk I was in Spinal with used it and it seems effective but one girl who was being given it in the morning could not function as she was wasted for want of a better word although she was on 40mg. They changed her to night and as a result she used to make the gym most mornings after that.

In summary I would say it seems an effective pain killer particularly for nerve pain but does seem to cause lethargy and dozyness. It's commonly used as an alternative to Gabapentin.

[catmint]

I was prescribed this for pain and at first it seemed fine. I was taking 10 mg at night. As Colin found I also experienced lethargy in the mornings...then again not being a 'morning person' it was no great problem.

However after about 3 months I started to get this terrible feeling that I can only described as though something was being tightened around my neck. It would happen a couple of hours after I got up. Not pleasant. My doctor just said some people get reactions but to persevere. I decided to stop taking them.

What I find interesting is that I too am alergic to coedine. If I take it I have severe breathing difficulties and confusion so I wonder if that's the key.

I did some research online and it seems to be the drug of choice for a lot of GPs because it is cheap. There are a lot of newer ones out there but they cost more.

[Iain]

The other thing to be aware of is the potential effects on bladder neck function - tends to cause retention of urine - ie increase in pressure in the bladder. Depending on the type of bladder management (and indeed other medication), it may be an issue.

Iain

123, on 19 February 2011 - 10:28 AM, said:

I've recently been prescribed this drug for severe upper back/chest pain and was wondering if any of you have had any experience of taking this medicine (good or bad - I need to know what I'm letting myself in for!). I'm particularly worried as I've had very bad allergic reactions to drugs in the past (temporarily paralysed by codeine once, years before my SCI). I tried tramadol initially, which was an effective pain killer, but had to stop it because I was getting a 'pressure' type feeling one side of my head. I'm just hoping I can find a solution to all this, as this new pain has diminished my quality of life even more. Any ideas??

Leah

[sh1wn]

I take 10mg at night for sleep and it did make me drowsy in the mornings at first, but it went away after the first week or so.

[edlee]

Do you take no other pain med, then? I've found myself in a position where neither Gabapenti nor lyrica have enough affect at controlling my pain ( neuropathic). I am at very close to the upper limits of each,, respectivly,, and am wondering what next.
ed

[123]

Hi guys,

Thank you so much for all your replies. I'm thinking now I should maybe try the amitriptyline, even if it means risking feeling crappy for a while. I was actually quite fortunate in the early days as I had virtually no pain and only took medication for bowel function. I was more or less numb from the chest down and feel stupid now for complaining about this! Two years down the line I'm crawling the walls with pain - I know exactly how you're feeling, Ed. Occasionally it disappears for a while like a light being switched off, but most of the time it's there. I don't know whether this has been brought on by stress (also had a personal problem), or whether this is all part of the healing (or deterioration?) process. To be quite honest I'm still fairly ignorant about SCIs, as is my GP, and I tend to rely on the Internet for any information. So far, the only pain killer I've tried is tramadol; not taking any other meds yet. Bladder management isn't an issue and, as the amitriptyline is effective for some people, I may as well give it a go. I can't go on living with my upper body feeling like it's stuck in a vice for much longer!!

Thanks again,

Leah

[Edinburgh Colin]

123, on 19 February 2011 - 11:53 PM, said:

<br />Hi guys,<br /><br />Thank you so much for all your replies. I'm thinking now I should maybe try the amitriptyline, even if it means risking feeling crappy for a while. I was actually quite fortunate in the early days as I had virtually no pain and only took medication for bowel function. I was more or less numb from the chest down and feel stupid now for complaining about this! Two years down the line I'm crawling the walls with pain - I know exactly how you're feeling, Ed. Occasionally it disappears for a while like a light being switched off, but most of the time it's there. I don't know whether this has been brought on by stress (also had a personal problem), or whether this is all part of the healing (or deterioration?) process. To be quite honest I'm still fairly ignorant about SCIs, as is my GP, and I tend to rely on the Internet for any information. So far, the only pain killer I've tried is tramadol; not taking any other meds yet. Bladder management isn't an issue and, as the amitriptyline is effective for some epeople, I may as well give it a go. I tarcan't go on living with my upper body feeling like it's stuck in a vice for much longer!!<br /><br />Thanks again,<br /><br />Leah<br />

<br /><br /><br />
a
I only started to need the pain management recently and spasm drugs about 3 months ago. I'm 21 months post injury and incomplete, consultant says it's nerve related and because of regeration. Bugger really I would have prefered more movement!

[123]

Hi Colin,

I'm really glad you said that because it answered one of my questions. I actually pondered on the possibility that mine may be due to the regeneration process. I had my spinal cord surgery 26 months ago (but lost the use of my legs 6 months before that). The beginning of my pain coincided with my bowel function returning and I keep hoping it may be a good sign (of course, I could be kidding myself and just clinging on). It's almost as if my condition has entered a different phase and is changing. I just hate the pain and find it is slowing me down and holding me back physically and mentally. I've been spending most of the day laying down; this is something I've never done or had to do since leaving hospital. Don't suppose your consultant gave any indication as to whether it can go again??

[edlee]

I'm a complete,123,, and have had no return,, but my pain started about two years in. I guess it's been there the whole time,, but never was much of a bother till then. I don't have much when I'm lying down, either,,, but I decided that I'd rather hurt than spend my life in bed. Beginning to think about that, now.

It would, I think,, be easier to accept if I thought I was getting something out of it,,,, well,,, maybe I'll just convince myself that's the case.

As for the meds,,, whatever lets you get on with what you want to do, seems like a small price. I'll keep lookiong, too. If I find anything better,, you can be sure,, you'll hear it here.
ed

[silone74]

Hi I am on amatriptyline and so far it has help with some of the pain but it has totally wiped me out i cant get out of bed in the morning it seems after taking my morning tablets it just knocks me for six and it is not getting any better as time goes on I have asked the doctor that prescribed it to me if there where any other alternatives but seeing as I have tried other meds with no effect on the pain it is really the last resort according to the doc I also have anesthetic patches to apply to the areas but there is so many areas of pain they dont work they just end up rolling up into a ball under my t shirt and they don't stick under my arm I am starting to wonder weather I should try and cope with the pain but it gets so bad at times i can't move but I am spending half the day in bed and even when I force myself to get up I have light headedness for a few hours after and I have cut the dose down to 10mg and take it earlier on a night to try and help but it doesn't?

Si

[123]

Hi Si,

I am in exactly the same position as regards to pain and it is really debilitating. Like you, I find I am spending more and more time either in bed or laying down on the settee, as even sitting upright hurts. I've tried everything from heat patches to hot water bottles and all to no avail.

I had to discontinue taking the amitriptyline as it was making me depressed (ironic considering it is supposed to be an ANTI depressant!). It did help with the nerve pain at first but after a few days I felt my mood drop. The last night I took it I ended up going to bed at 8pm in floods of tears. I felt as though a black cloud had been cast over me, it was really horrible. I found that I couldn't sleep either, which is also bizarre as it's supposed to make people drowsy. I just don't know what to try next to help myself. The doctors don't seem to know much either!

Leah

[silone74]

Hi Leah

I am seeing the pain team at my local hospital it has only been up and running for about 7 months but it was the doctor there that put me on the amitriptyline the only thing is there are so many people that have been refered to the new pain clinic and they only run 2 days a week it takes along time to get seen by the doctor so I have seen the doc twice in the 7 months and the pain is still there my GP does not really know about alot LOL to be honest so I don't visit them alot unless its important.
It also has effected my mood I really put it down to not being able to get up and out like I want to but also I can be wide awake through the night one time and then some times sleep through the night and through the day I don't want the pain but I also don't want the side effects of the meds.

I know it won't get better quickly but I hope you get something sorted with this as I hope I will I have put up with the pain for so long it has become part of my life which it should not have to be.

Si

[greybeard]

I have just been prescribed amitriptyline so it has been interesting reading all your posts. Low start 10mg at night raising to 30mg. It will be good to get a decent night´s sleep - I hope!

[sh1wn]

It has worked great for me using it for sleep. All the other sleep aids I have used worked good at first but lost there effects after a few months. I have been on the same dose of amitriptyline for a year and a half or so. The bad part is I am unable to sleep at all if I miss a dose.

[Edinburgh Colin]

greybeard, on 15 July 2011 - 05:10 PM, said:

I have just been prescribed amitriptyline so it has been interesting reading all your posts. Low start 10mg at night raising to 30mg. It will be good to get a decent night´s sleep - I hope!

Good luck GB, it certainly should help you sleep!
My pet hate was I could not get concious in the morning, I was taking mine at 10/11 at night. After talking to a non Sci mate on it, he took his at 7pm otherwise could not get up for work the next dy.
Let us know how you go over the next few weeks.
EC

[brockit79]

Hi,

I take this drug so I thought I would reply.

I take 50mg at 6pm that way I get good sleep and am OK in the morning. I take pregabalin too at 10pm. This combination works well for me.

I have tried to come down a notch in dose twice with no luck. When I have accidentally neglected to take either one of these tablets I have a really bad time with pain. I really rate both amitriptyline and pregabalin (lyrica) as neuropathic pain meds.

I believe that you should take as little as possible but a dose which is effective to manage pain. I am dreading trying to lower my doses of both of these drugs (again) and fear that I am dependent on them.

One of the side effects listed is increased pins and needles (interesting as it would seem that it can cause the thing it treats) and another is constipation which can be a another problem for us SCI folk.

I, personally, am going to try everything I can to come off these medicines by taking baths at night, getting active using FES machines and swimming. Activity mediates pain and personally I notice it more when I am relaxing (trying to).

Good luck with it. I hope you get some relief,
Broc

[AussieBrad]

Hiya Leah,

I used to take amitriptyline for nerve pain and a little depression but found it ineffective.
I spoke to my DR. and he prescribed Cymbalta for me. I am taking 20mg at dinner time and have
found it to be more effective. It is a newer medicine used for depression but is also great for nerve
pain relief.
Also I am not as drowsy in the mornings.
It works for me and mabe it is something you could look into.
Hope you find the right combination.

Cheers Brad

Just a short note, my partners sister was on a high dose of amitriptyline and found it was very hard to ween off of. So just be aware that it may be a highly addictive drug.Of course I am only speaking from our experiences with the drug.

Edited by AussieBrad, 16 July 2011 - 08:45 AM.

[russ1]

Horrible stuff that amitripitylene - it's primarily an anti depressant and in my opinion commonly misprescribed to early stage SCI's many of whom don't need an anti depressant. When I came off amitripitylene my friends described it as me not acting and thinking in slow motion any more. I moved from amitriptylene to gabapentin which for me worked better for neurological pain and didn't have the horrible side effect of turning me into a zombie, I'd never ever go back to taking it.

[Boudica]

I was perscribed it recently for nerve pain and yes I got a good night sleep but found myself very drowsy and had to set three alarms to try and wake me up in the mornings. I start work at 7am and it definitely affected my driving/speech and I didnt really wake up until 11am lol. I took myself off it but I dont sleep very well now.

[Cathelena]

Boudica, on 16 July 2011 - 08:02 PM, said:

I was perscribed it recently for nerve pain and yes I got a good night sleep but found myself very drowsy and had to set three alarms to try and wake me up in the mornings. I start work at 7am and it definitely affected my driving/speech and I didnt really wake up until 11am lol. I took myself off it but I dont sleep very well now.

I was prescribed amatriptyline whilst in rehab for the pain at my point of injury, which they called junctional pain. I came off it after a few months because, although it
workrd ok for the pain it made me so drowsy. Also, i know alot of the medication we take gives us a dry mouth but with this I found my tongue literally sticking to the roof of my mouth when trying to speak. I was then prescribed imipramine, which is apparently a "sister" drug abd find it works even better for the pain i was [rescribed it for
without the nasty side effects

[pinkcloud]

hi leah

i'm on 60mg..at first its hard ok, possible nightmares, crying bouts..please do keep on it.

I went up slow.

without it, life would be unbearable, as i got tooth ache abseess pain down the body..without it...it will be a absess tooth pulled out with a string and door slam.

its old, its tried..its great.

no way in this world would i ever been able to work during these early stages of taking them, you wake up with a hang over....

i so hope they work, i was the type who thought of drugs as 'one i'd go crying to a dr and say help...i'm going mad'....good as it kept me off street drugs..not so good as took me so long to brave taking tablets.

lets us know how to get on..nerve pains evil

[steve parsons]

123, on 19 February 2011 - 10:28 AM, said:

I've recently been prescribed this drug for severe upper back/chest pain and was wondering if any of you have had any experience of taking this medicine (good or bad - I need to know what I'm letting myself in for!). I'm particularly worried as I've had very bad allergic reactions to drugs in the past (temporarily paralysed by codeine once, years before my SCI). I tried tramadol initially, which was an effective pain killer, but had to stop it because I was getting a 'pressure' type feeling one side of my head. I'm just hoping I can find a solution to all this, as this new pain has diminished my quality of life even more. Any ideas??

Leah

I use a mix of amitryptaline and gabapentin and this combination seems to work best for me. At the moment i take 3000mg of gabapentin and 100mg of amitrypaline. Hope this helps

Steve

[Edinburgh Colin]

steve parsons, on 28 July 2011 - 12:25 PM, said:

123, on 19 February 2011 - 10:28 AM, said:

I've recently been prescribed this drug for severe upper back/chest pain and was wondering if any of you have had any experience of taking this medicine (good or bad - I need to know what I'm letting myself in for!). I'm particularly worried as I've had very bad allergic reactions to drugs in the past (temporarily paralysed by codeine once, years before my SCI). I tried tramadol initially, which was an effective pain killer, but had to stop it because I was getting a 'pressure' type feeling one side of my head. I'm just hoping I can find a solution to all this, as this new pain has diminished my quality of life even more. Any ideas??

Leah

I use a mix of amitryptaline and gabapentin and this combination seems to work best for me. At the moment i take 3000mg of gabapentin and 100mg of amitrypaline. Hope this helps

Steve

Jeez Steve that's a lot. Did you titrate up to that level? Do you know if you backed off a little would the nerve pain surface again?
I think 3600mg Gabapengin is the max and I'm not sure about the Amitriptylene maximum dose.
EC

[Trinity]

Edinburgh Colin, on 28 July 2011 - 04:16 PM, said:

steve parsons, on 28 July 2011 - 12:25 PM, said:

123, on 19 February 2011 - 10:28 AM, said:

I've recently been prescribed this drug for severe upper back/chest pain and was wondering if any of you have had any experience of taking this medicine (good or bad - I need to know what I'm letting myself in for!). I'm particularly worried as I've had very bad allergic reactions to drugs in the past (temporarily paralysed by codeine once, years before my SCI). I tried tramadol initially, which was an effective pain killer, but had to stop it because I was getting a 'pressure' type feeling one side of my head. I'm just hoping I can find a solution to all this, as this new pain has diminished my quality of life even more. Any ideas??

Leah

I use a mix of amitryptaline and gabapentin and this combination seems to work best for me. At the moment i take 3000mg of gabapentin and 100mg of amitrypaline. Hope this helps

Steve

Jeez Steve that's a lot. Did you titrate up to that level? Do you know if you backed off a little would the nerve pain surface again?
I think 3600mg Gabapengin is the max and I'm not sure about the Amitriptylene maximum dose.
EC

I know amittriptyline has a pretty high maximum dose as the neuro pain dose is sub therapeutic for it's anti-depressant effect, however fair play to anyone that can function with 100mg of amitriptyline in their system, I can't function properly at half of that!

[greybeard]

The 30 mg dose of amitriptyline before bed is certainly helping to reduce the ferocity of the burning/scalding on my thigh during the night, but on Friday night and again last night there were worrying developments that make me wonder if this drug is actually making things worse.

On both these nights I was woken by what I can only describe as a burning, tingling, numbness starting from my saddle area and bilaterally down to my feet. I had no additional loss of motor control, but no sensation apart from what I have described. After sitting on the edge of the bed for about 10 minutes, I felt confident enough to stand with my stick, but was aware that I wasn't in full control of my legs. I did manage to totter to the bathroom and urinated successfully despite the saddle numbness. I also noticed heightened sensation on the soles of my feet. The tiled floor felt much colder than usual.

On both of these occasions I awoke laying flat on my back. This is the sleeping position that triggered the initial burning/scalding. I am wondering whether the amitriptyline is masking the pain too well, and is actually causing me to stay on my back long enough to do serious damage. Would I be better off without it, and being woken by the burning so I am forced to change position earlier?

I have a doctor's appointment booked for Tuesday morning to discuss this, but it will not be the one who prescribed the amitriptyline. He is on holiday.

I know I should seek emergency treatment if I experience any sudden weakness, anal numbness or incontinence, but I'm not sure if this qualifies as sensation is returning almost completely when I change position after these episodes. They have made me a little fearful of going to sleep on my 10" thick Tempur mattress at the moment. I thought they were supposed to make you better!!

Anyone experience anything similar, or have advice based on personal experience?

Edited by greybeard, 05 September 2011 - 01:38 PM.

[sherbs]

Greybeard

I find sleeping on my back makes my spasms and burning / tingling pain worse, so i avoid it at all costs.

i do occasionally wake in the morning and i am on my back, and my pain levels are so much higher

I sleep on my side at night, either side, in the fetal position or one leg over the other, with a small pillow in the curve of my back, i know sounds delightful, but having a small pillow does help with the low back pain

hope this is of some help

[greybeard]

Thanks Sherbs. I had already decided to try a pillow behind me tonight to try and stop myself from rolling on to my back.

[Edinburgh Colin]

Geoff, you tried a pillow under your knees while on you back? It tilts the pelvis a little and for me stops al the spasm activity in my legs. I only sleep that way occasionally and not for too long either but it does give the body a change of posture.
You know my feelings on the evil Amatrip!
EC

[greybeard]

Trouble is, Colin, that I roll on to my back while I'm asleep. No opportunity to tilt my pelvis with a pillow. Thanks anyway.