Irritable bowel syndrome and Amitriptyline

Hi Annie - this is really really helpful - thank you so much for sharing your experience - I really appreciate it. Everything you’ve written here is extremely relevant. My relative has tried various diet related things - but part of me wonders if they didn’t try them for a long enough period to get results. I think often there is not one answer to these sorts of chronic issues and causes are multifactorial. My relative has been dealing with a lot of stressful things in their life for a very long time - years. I think autistic people find so many aspects of life very stressful (I know I do) and the impact on our health can show up in lots of ways. Definitely with gastric issues. 
You’ve confirmed what other people have said about it making you drowsy. My relative is probably going to be very unhappy if they get that as they are naturally far from drowsy - much the opposite! - and they like to b3 really sharp and on the ball. Still - maybe it’s being quite ‘wired’ that’s partly causing this. 
Thanks for the warning about coming off it. Their Doctor has said to try it for 8 weeks and see how it goes. I’m just keeping my fingers crossed that the side effects aren’t too severe for them. And who knows - maybe it will really help. 
I wish my relative would be referred to a dietician- I think that would be helpful. I don’t think anyone has suggested that (as far as I know). They’ve lost a lot of weight - even though they eat a lot. 
Thanks so much for sharing your experience- it really is so helpful and reassuring to hear other people’s experience with these things. When you google Amytriptyline the results are a bit scary! 
I hope that the changes you have made have worked for you :) 

Thank you Starfox - that’s really helpful to know. It’s so strange how people can have such different reactions to the same drug. It’s so helpful to hear of both experiences though - as it’s helpful to be prepared for what my family member might experience. I must confess I’m very worried about them taking this drug - but I want to be prepared so that I can be supportive if something like this happens. Knowledge is power isn’t it? Almost anyway! Better than having no idea what to expect at all. 
I’m sorry about your experience - it sounds dreadful and must have been awful for you. Many years ago I had a really terrible reaction to an anti-depressant and I will never ever forget it - 2nd worse experience of my life. I think this is why I’m so wary of my relative taking this. I definitely wouldn’t dare take it. But because they’ve struggled so much with their digestive troubles I think they’re pretty desperate at this point. 
so I’ll just have to keep my fingers crossed for them. 
thanks so much for your help - and I’m glad it’s helping your mum :) 

I had to take Amitriptyline for migraines in the past, but hated it, made me feel like someone had poured me full of cement, was so tired, couldnt think, could barely move, so difficult to do anything that I just cried. I then decided to stop it without tapering, very bad idea, nonstop panic attacks, resting heart rate of about 150, sweating, horrid thing. But then again, my mum takes them to help her sleep (1 at night) and she doesnt have an issue (except a slight med hangover in the morning), so all people react differently, but for me it was one of the worst medicine experiences I have had.

Yes, I have a friend with high bp who does exercise and seems to have a reasonable diet, he has to take the pills. And I am glad of my arthritis pills, and my husband takes meds too, but we try to keep it to a minimum. I don't want to end up having to take pills for the side effects of pills ad infinitum!

It’s great that you managed to get your blood pressure down through diet and exercise - and off course your whole health (mental and physical) will benefit from that too. I really do believe that if it’s possible it’s the best approach. Of course sometimes it’s not - and there’s little option but to take the drugs. My husband has asthma for example - he really needs that medication. 

Yes, I'm another who prefers the bare min of meds, though I am very reliant on the one I take for my arthritis and am afraid they keep wanting me to change it.

When I had high blood pressure they wanted me on meds for that, but I decided the side effects sounded really bad and insisted I first try to change diet and exercise, given that how bod both were was probably the cause in the first place. And it worked, though I have not proved it to them as I hate having my blood pressure taken and it can only be done manually, those machines are horrible, they hurt me so the bp spikes and gives the wrong reading anyway. I know my bp has gone back to normal range as it was OK at the dentist for a root canal! They have to take my bp for sedation.

I have suffered from severe anxiety for about 25 years. It was really really bad last year after a bout of serious illness at the end of 2021. My anxiety was off the scale and I was ready to try anything (waiting list for therapy was 11 months and I’m still not at the top of the list) but can’t take SSRIs due to a severe adverse reaction when I took them many years ago. 
Anyway last year someone on here (can’t remember who unfortunately!) recommended something called L-Theanine. So I bought a product by Viridian : L-Theanine and Lemon Balm. It might be coincidence, or placebo - or just something else - but I’ve seen a lot of improvement. Obviously I can’t be sure but I think it might have been significant in helping reduce my anxiety. Worth trying - I’d recommend it to anyone to try. I really think it’s helped me. No side effects, small easy to swallow capsule. So whoever recommended it I’d like to say thankyou - whoever you are! 

With me I tend always research things (sometimes more than is probably helpful) - and when you read up on most drugs it can be pretty alarming. With something like stomach acid there’s so much you can do that is natural and harmless - but I think many Doctors don’t have the time or inclination to help patients in this way. Wide societal change is what’s needed to make us all healthier and happier - and I don’t see any prospect of that right now! I once had a sort of inflammation/arthritis/rash episode and my GP couldn’t identify the cause - or treat it with anything apart from soothing creams of various types for the skin to deal with the allergic type rash. So I thought I’d do a fast (I’d read that can help arthritis) and then have the simplest, healthiest diet possible. This meant that immediately over 90% of the food in the supermarket was off limits. I realised just how dreadful most of the food that’s sold in supermarkets is for us. 
My symptoms gradually just went away over about 4 months. I’ve no idea if what I did helped or if it was something else - but I learnt so much in the process. I don’t have such a healthy diet now - it’s a bit more ‘some unhealthy things in moderation’ - but I’m glad I have a better understanding now of what’s good for the body, and what isn’t. 

I'll take anything I can get my hands on if it helps my anxiety. sadly though, I think it is an autistic thing for anti-anxiety meds to just stop working after a short time due to some sort of in-built resistance and mabe worse side-effects. These days, I have diazepam for intermittent use (especially challenging days) and that stops me becoming 'immune' to its effects

Me too - I only take medication if it’s vital. I wonder if it’s a common thing with many autistic people? It might be I suspect. 

You’re welcome, if they are happy to try it and it is a lower dose, they can always stop if it doesn’t agree with them. You are most probably similar to me , I don’t even take paracetamol unless there is no other option.

Yes - my stomach always reacts really badly to stress. I remember years ago my mum phoning me and telling me my dad had cancer and it affected my stomach immediately. 

Thanks Roy - that’s really helpful. Yes - I have looked at the side effects of Amytriptyline and they are extremely concerning. I’ve advised my family member that it might be a good idea to pause and try other alternatives first - but they’ve been struggling with the symptoms for years and are feeling at the ‘I’ll try anything at this point’ stage. So they plan to take this drug - and it worries me to be honest. Part of me thinks the long term use of the PPIs has actually made the situation much worse, And as they’re autistic coping with the pain etc is perhaps harder to tolerate, and they have certainly had a huge amount of stress these last few years. As ever these things are often multifactorial and therefore hard to solve. 
I really appreciate the advice you’ve shared with me - please thank your wife for me too. We were relieved it wasn’t crohns too - but my family member wanted a clear diagnosis and a clear solution  - and he wasn’t given that. There are one or two academic papers online about Amytriptyline helping with IBS - so who knows - mayb3 it will help. I have to say that if it was me I wouldn’t take it. I think I’d try the natural, improve the gut biome route, and maybe fasting sometimes too. I always try a natural solution first before taking pharmaceutical drugs. My relative isn’t quite as averse to them as I am though. I’m just keeping my fingers crossed that their experience with this drug isn’t as bag as your wife’s was. I’ve heard lots of bad things about it. 

Thanks Roy - I really appreciate your help

Yes, I think stress is an important factor. Next to the brain, the gut is the most innervated part of the body. When my mother was in her terminal illness my gut problems were at their worst ever.

Hi, sorry for not getting back to you last night, I explained what has been going on and Amitripyline had been prescribed. Her first words were WTF. It’s used as a painkiller or for mental health issues / anxiety, I’m sure you have googled it and the side affects. My wife said  she was prescribed it for a back injury, she stopped taking it as in her words, “ it nearly sent me mad,” it sounds as if you maybe are  asking for a younger person, so more caution.

The other drugs are just for reflux, IBS is just something that some people unfortunately live with, glad  Crohns has been ruled out, more autistic people have stomach problems, whenever IBS patients are scoped, they very rarely find anything. Diet obviously plays a big part, the usual suspects, fry ups, spicy food and alcohol. Too much fruit is not good as it can be full of acid. She uses peppermint tea or buscopan. You are trying to stop the stomach from spasms. There are quite a few over the counter products, there unfortunately isn’t much more help than that. The stomach gut axis is basically the brain and stomach communicate, you have heard of a ‘knot in the stomach’ or when we get anxious we often need the toilet,( things like a driving test) it sounds as if the doctor is trying to help the anxiety and lessen the brain triggering the stomach.

I wonder how hard it is to make? Cabbage is cheap...

Yes - I’d like to try sauerkraut- I’ve never had it but have been meaning to try it.. I’ve sometimes looked at it in a shop and been close to buying it - but then been tempted into spending the money on something more obviously nice (like a cake!).

These ‘health foods’ are so often really expensive. We’re on a budget so it’s hard to always give up the unhealthy treat for the more worthy offerings. 

I agree, on all points.

Fermented cabbage is supposed to be very good, proper sauerkraut, or kimchi, but it has to be the right stuff and properly fermented, not just with vinegar added to taste a bit similar.

Thanks Sparkly - I really appreciate that! x