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Original poster

I am so scared to take this medication due to potential long term side effects - WWYD?

18 replies

CaraVann · 21/04/2025 12:31

I have suffered with a functional gut issues for decades, it has completely shaped my life and not for the better. It has lost me so many opportunities in my life including a career, social events, friendships and simply living a happy and contented life. As I am getting older it has worsened and my whole day is consumed with various upper and lower gut symptoms, which is truly miserable.

I have spent all of my savings seeing private gastroenterologists and gynaecologists (I also have endometriosis which is probably all connected). Money has also been thrown at dietitians, trying every digestive health diet going, seeing private hypnotherapists and meditation experts and that's not including all the NHS specialists that I have seen. I have had every test going, cameras up and down, scans, stool tests, tests for bile acid issues, coeliac disease, h pylori...... I have tried endless off the shelf and prescribed medications. Nothing, absolutely nothing has helped long term and I now have no money left for such things.

But there is one medication that could (potentially) help and it seems to help a lot of people with issues like mine. That drug is Amitriptyline.

I had been prescribed Nortriptyline which is the sister drug and works in the same way (it is supposed to have less side effects than Amitriptyline?). I tried it a couple of years ago and started to see some positive changes, my digestive system seemed calmer and much less gurgly and overactive (and less trips to the loo). However, I then discovered it is part of a group of drugs called anticholinergics and these are being linked to dementia.

Dementia terrifies me because I care for my mum who suffers from Alzheimer's, it is such an evil disease and it takes down everyone with it. Seven years on and as a family we are broken. Had I not known about these drugs being associated with dementia I would happily be on them now but I am so hesitant that I don't know that to do, it seems to be one of my last chances to gain back some life, the last 27 years have been dominated by my out of whack and out of control gut problems. I am 52 and yearn to live my life, to be able to go out for meals (My poor teens have hardly ever been out for family meals as I usually end up in so much pain after eating or needing the loo suddenly so I prefer to eat at home where my loo and bed are!), to travel loads and not to have to worry where every loo is or to give my digestive system a second thought.

I know only I can make this final decision but if you were in my position would you take or at least try the medication regardless of any potential long term side effects?

OP posts:
RosesAndHellebores · 21/04/2025 12:34

I'd look at it as potentially 20 to 30 years of quality of life now compared to a tiny increase of alzheimers developing at the end.

Have you tried cutting out wheat?

GroupDiscountOnTheBusToHell · 21/04/2025 12:39

I tried Amitriptyline for a different issue. It kept me awake all night, even though it has a sedative effect on most (but not all) who take it. I felt like I head of cement the next day and there was no way I could drive, so I stopped it after a week.

I do however now take gabapentin. I was so worried about the possible effects and possible risk of dementia I held on to the prescription for 6 months before even trying it. I had two grandparents with dementia and my dad is now in a dementia care home, so it is something that concerns me a lot. I did decide to try it, and it has really helped me. I will just have to live with the future consequences because I don’t think I would actually still be here if I hadn’t eventually decided to try it.

Pigeonqueen · 21/04/2025 12:46

I just knew this would be amitriptyline before I opened the thread.

The doses used for pain and gut issues are tiny compared to the huge doses people used to take for depression etc in the past.

It has been a miracle drug for me. I have had severe bladder and pain issues related to lupus since I was 14 (now 44). I had been on daily long term antibiotics since 14 for interstitial cystitis and bowel issues and that gave me terrible invasive Candida. My new urologist persuaded me to try amitriptyline and it has honestly changed my life. I have been able to completely come off the antibiotics and reduce my other pain medications. I can take up to 50mg but find 10mg
is enough for me.

If you do try it be aware that for the first couple of weeks it can make you feel quite groggy the next day but this wears off. Take it 2 hours before bed because it makes you sleepy.

The risk of dementia on the lower doses is very small and personally I am happy to take that risk for the quality of life it gives me. (I do have experience of dementia- my Gran and Grandad had it so not naive to how awful it can be).

Interested in this thread?

Then you might like threads about these subjects:

Dementia & alzheimer's General health
Original poster
CaraVann · 21/04/2025 12:48

RosesAndHellebores · 21/04/2025 12:34

I'd look at it as potentially 20 to 30 years of quality of life now compared to a tiny increase of alzheimers developing at the end.

Have you tried cutting out wheat?

Thanks, I do need to look at it like that, I know.

Yes, I am wheat, gluten, dairy, sugar free and low fodmap.

OP posts:
lilyflower1803 · 21/04/2025 12:49

My partner swears by amitryptaline, it has changed his quality of life that was poor. Totally understand though, I take fexofenadine daily for allergies which has increased risk of dementia, but it’s a cost-benefit analysis.

lilyflower1803 · 21/04/2025 12:50

^he got it for gut issues too

Original poster
CaraVann · 21/04/2025 12:50

GroupDiscountOnTheBusToHell · 21/04/2025 12:39

I tried Amitriptyline for a different issue. It kept me awake all night, even though it has a sedative effect on most (but not all) who take it. I felt like I head of cement the next day and there was no way I could drive, so I stopped it after a week.

I do however now take gabapentin. I was so worried about the possible effects and possible risk of dementia I held on to the prescription for 6 months before even trying it. I had two grandparents with dementia and my dad is now in a dementia care home, so it is something that concerns me a lot. I did decide to try it, and it has really helped me. I will just have to live with the future consequences because I don’t think I would actually still be here if I hadn’t eventually decided to try it.

I do need to look at it with keeping the here and now in mind. I will always be petrified of dementia but I am not living a decent quality of life right now. I am going to have to give it some thought and at least try it for a trial period and see how I feel and work from there?

OP posts:
Original poster
CaraVann · 21/04/2025 12:52

Pigeonqueen · 21/04/2025 12:46

I just knew this would be amitriptyline before I opened the thread.

The doses used for pain and gut issues are tiny compared to the huge doses people used to take for depression etc in the past.

It has been a miracle drug for me. I have had severe bladder and pain issues related to lupus since I was 14 (now 44). I had been on daily long term antibiotics since 14 for interstitial cystitis and bowel issues and that gave me terrible invasive Candida. My new urologist persuaded me to try amitriptyline and it has honestly changed my life. I have been able to completely come off the antibiotics and reduce my other pain medications. I can take up to 50mg but find 10mg
is enough for me.

If you do try it be aware that for the first couple of weeks it can make you feel quite groggy the next day but this wears off. Take it 2 hours before bed because it makes you sleepy.

The risk of dementia on the lower doses is very small and personally I am happy to take that risk for the quality of life it gives me. (I do have experience of dementia- my Gran and Grandad had it so not naive to how awful it can be).

Edited

Thank you, that is very reassuring, so glad to hear they are helping you.

I have been given 10mg and if I do take the plunge and go for it I plan to cut them in half to start and go in low and slow to start.

OP posts:
Original poster
CaraVann · 21/04/2025 12:53

lilyflower1803 · 21/04/2025 12:49

My partner swears by amitryptaline, it has changed his quality of life that was poor. Totally understand though, I take fexofenadine daily for allergies which has increased risk of dementia, but it’s a cost-benefit analysis.

I am going to try to put myself in that mindset of quality of life over anything else right now.

OP posts:
lilyflower1803 · 21/04/2025 12:56

CaraVann · 21/04/2025 12:53

I am going to try to put myself in that mindset of quality of life over anything else right now.

Show quote history

Definitely I would too, you can try it for a bit and see how you get on then you can always come off it and see how you are too! He’s on 10mg, has no side effects at all and he takes it at night! To be a bit philosophical, you never know what is in the future and many things have correlation to certain issues as we get older, but who knows if it is a causation or something else. Do stuff that makes you happy and hopefully makes you feel better now in the present, then if you get to a place where you feel you want to come off it, you have that option too.

all the best to you, let us know how you get on x

Pigeonqueen · 21/04/2025 13:37

Something else to consider - there are a lot of medical advances etc being made in the world of dementia, and by the time we get to that stage (if we ever do, and it’s not a given) there may be new medications, treatment etc we can have then anyway. I personally prefer to try and live in the now. Living with a chronic illness is horrible and we need to try and find the immediate joy and quality of life where we can.

BrisTG · 21/04/2025 14:17

I was given low dose Amitryptaline as a painkiller for something unrelated to my gut. However, it absolutely 100% changed my life in terms of my gut. TMI warning: Sometimes I wouldn’t make it to the bathroom. I would have spasms and loose stools (regardless of diet etc) but amitryptaline basically stopped it in its tracks because it slows down the digestive track.

as someone else said, it’s more important to live you life than worry about the (very small chance) of Dementia kicking in. Whether you took amitryptaline or not, you’re still at a higher chance of getting it due to family history. And even then there are no guarantees.

No regrets for me. No harm in at least trying it

Original poster
CaraVann · 21/04/2025 16:02

BrisTG · 21/04/2025 14:17

I was given low dose Amitryptaline as a painkiller for something unrelated to my gut. However, it absolutely 100% changed my life in terms of my gut. TMI warning: Sometimes I wouldn’t make it to the bathroom. I would have spasms and loose stools (regardless of diet etc) but amitryptaline basically stopped it in its tracks because it slows down the digestive track.

as someone else said, it’s more important to live you life than worry about the (very small chance) of Dementia kicking in. Whether you took amitryptaline or not, you’re still at a higher chance of getting it due to family history. And even then there are no guarantees.

No regrets for me. No harm in at least trying it

The exact same symptoms I suffer from.

I do worry as mum has Alzheimer's I am naturally at a higher risk so the thought of taking a medication which could further push that risk is worrying but I need to, somehow, move on from that fear.

OP posts:
YellowSunRays · 21/04/2025 16:09

I took Amitriptyaline for IBS.
It absolutely worked.
It was a very low dose.
The only thing I would say is that, even at a very low dose, it was awful when I stopped taking it. Even carefully reducing it, I had horrible headaches.
I stopped taking it because it gave me heart palpitations which I believe is quite common. Given the issues you suffer though, surely it is worth trying if you are fully aware of the risks?

Original poster
CaraVann · 21/04/2025 19:12

YellowSunRays · 21/04/2025 16:09

I took Amitriptyaline for IBS.
It absolutely worked.
It was a very low dose.
The only thing I would say is that, even at a very low dose, it was awful when I stopped taking it. Even carefully reducing it, I had horrible headaches.
I stopped taking it because it gave me heart palpitations which I believe is quite common. Given the issues you suffer though, surely it is worth trying if you are fully aware of the risks?

The same thing happened with my sister, she took it for 20 years and she was symptom free for all of that time but a couple days of years ago she started getting palpitations and after having her heart checked she was advised to come of it and was put on Sertraline but her IBS has slowly returned.

OP posts:
Octavia64 · 21/04/2025 19:22

I took it for about ten years for an unrelated issue.

my ibs pretty much vanished unless I drank caffeine or ate dairy.

I now take a similar drug and my ibs is not back.

i don’t miss it.

IVbumble · 21/04/2025 19:36

I've been on it since 2019 for a different medical issue & I know I wouldn't be able to work without it.

My dose varies with how severe my symptoms are - I'm not sure that the shape of the tablets allows you to break them in half as mine don't have a 'score' line but maybe alternate days might work for you.

The sedative effect does mean I am unable to go out anymore in the evenings & I cannot have my younger grandchildren to stay over as I don't think I'd wake up if needed.

It also took about 10 days for the morning drowsiness to stop so I couldn't drive to work until after that time.

WeeOrcadian · 21/04/2025 19:40

Not for gut issues but I take amitriptyline, for a pain condition

I fucking love it. I can actually sleep when I take it. And I certainly know when I haven't (which reminds me, I haven't taken today's)

The risk is minor and I'll take that to actually be able to function

I speak as someone who lost their DF to Alzheimer's.

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