About this Support Group

I'd love this to be my Support group, cos I'm in love with it.
I love David too, so I'll be in his testing one too

Members

Allison M, annawato, Apac, Astra, Ayanna, BqHM7z7Ks8sP, Cat-a-Tonic, ChronyKate, cjh, cmack, Dmarks70, Doc_Kitty, foodlady, Gayle, Georgie98, Hamed, hillcountrygirl, Jessica91, Jo-b1, Johno87, kellehbeans, Kero, lacey2, Layla, lccmorris, long time crohnie, Lulu24, Mary:), Medwards30, Miaa, MsJason31, Nims22, niwid, Paul Cronk, PerkinsRooster, pjmel, poppysunflower, PVail, rollinstone, rrhood1, scottsma, Shreela, SooBee, StaceyC96, UnXmas, valleysangel92, Weeze2

I have absolutely no idea wot I'm doing, but it's fun trying!

I'm in, Joanie!

Not sure what this is exactly, but I would like to join it.

I haven't got a Scooby Doo neither, but we're in!

Shall we discuss our Amitriptyline experiences in here? I'll start. Hi, I'm Cat, I've been on Amitriptyline 25 mg for a little over 2 years now. My GI put me on Entocort in October 2010, and while it worked great, I had one side effect from it and that was constant, chronic headaches. After a couple weeks of that, I couldn't take it anymore and called my GI to tell him about the headaches. He put me on Amitriptyline and the headaches stopped! I was on Entocort for 7 months but have stayed on Amitriptyline with no plans to discontinue it. It prevents my migraines and helps me sleep at night. My GI feels like it should also be calming my guts, but I don't feel like it made any difference there. Still, I like not having regular migraines and I need all the help I can get with falling asleep, so I'm happy to stay on Amitriptyline.

Hiya I'm Joan and this Amitriptyline is the Dog's Doodah's!!
At high doses (250mg) it's an anti depressant, called tri cyclic, an old one, been around for decades.
Docs discovered it's uses at lower doses (10mg-25mg) as a first line defence for IBS, bed wetting and as a preventative for migraines.
I've been on it for over 2 years now, as a preventative for migraines. I discovered it's magic almost immediately, it stopped spasms and contractions in my gut, got rid of the headaches, but more importantly, I stopped getting up during the night.
I sleep so restfully, it's sheer bliss! Also, when I was on Pred or Entocort it keeps me calm!
One drawback, I put weight on, but that's ok, and it retains urine, sometimes it's hard to empty bladder efficiently.
I'd recommend this med for insomnia, anxiety and migraine/headache.
I have no intentions of ever stopping it, I love it xxx

I developed severe insomnia and restlessness/anxiety when I took prednisone for the first time. I tried buying sleeping pills but they didn't help. My GP prescribed my amitriptyline. At first I thought it didn't work because I was on a low dose (10mg) which is standard for treating insomnia.

My GP said to increase the dose until I found the amount that "knocked me out." At about 150mg (the dose usually used for depression) I was getting the best night's sleeps of my life! After weeks of taking it I realised not only was I sleeping again, but all the anxiety and restlessness had gone - I was always calm, and was a much nicer person to be around. My family actually commented on this! I presume this is because it's working as an antedepressant on me, even though that's not what I'd intended.

I can't say enough good things about it. It does make my bladder uncomfortable, but I'll take that any day rather than go back to how I felt before. And that includes how I felt before prednisone - my not-on-drugs normal state. I didn't know I could be such a calm person. I'm normally more than a little neurotic. I didn't realise how much until the Ami kicked in and I could notice the difference.

I've been on it since mid-December last year, and had worried about tolerance building up, but that doesn't seem to happen with this med. I'll keep taking it forever too.

Hi,I just got prescribed Amitriptyline 10 mg for insomnia...took just 3 tablets...I'm scared to take all the time,so I don't get hooked ...I wonder does anybody else have problem w/insomnia..and addiction forming...thx

Hi Miaa, welcome to the forum. Do you have inflammatory bowel disease? Why don't you share your story in the My Story part of the forum, so that everyone can get to know you.

Amitriptyline will work best if you take it consistently every day. It's an anti-depressant so it's non habit-forming. You won't get addicted to it.

Miaa said:

Hi,I just got prescribed Amitriptyline 10 mg for insomnia...took just 3 tablets...I'm scared to take all the time,so I don't get hooked ...I wonder does anybody else have problem w/insomnia..and addiction forming...thx

10mg (or 30mg if you took 3) is a very low dose, so you shouldn't worry too much. To get it working for my insomnia, I had to go up to 150mg. Although that's a higher dose than usual for insomnia treatment, people taking it as an anti-depressent go up to 300mg. So at your current dose the side effects shouldn't be too bad.

As Cat said, it's not addictive and does take a while to build up in your systmen so you have to take it consistently, though that's more true for its anti-depressent effects than for its sleep-inducing properties, which tend to start straightaway. However I have found that if I take a higher dose (say 200mg - I played around with the dose a lot to find what was best for me) I'll sleep longer and deeper, but not necessarily on the night I take the higher dose - it might be a night or two later. It's hard to predict the timing of its effects, so you do need to be consistent in taking it once you're found your optimum dose. Often a doctor will start you on a low dose and then have you build up gradually until you get to an amount that works well for you.

While it isn't addictive like some other drugs, it can cause a physical withdrawal if you stop suddenly after taking it for a while. From the leaflet that came with my prescription:

DO NOT stop taking these tablets suddenly...
... Withdrawal symptoms ... include feeling sick, headache and generally feeling unwell. Gradual withdrawal is associated with ... symptoms including irritability, restlessness, excitement, and hyperactivity, as well as dream and sleep disturbances during the first two weeks of dosage reduction. Feeling elated or overexcited has been reported ... These symptoms are transient and are not a sign of addiction.

So it's really important you follow your doctor's instructions, both now and if/when you stop taking it.

It's worked so well for my insomnia, I feel so much better on it. It took a while to get the dose right and for all the effects to kick in. If you decide to take it, make sure you stick with it a good few weeks in order to feel its benefits. If you get side effects you don't like, go back to your doctor to discuss coming off it or finding ways to counter the side effects.

If you're not happy taking something that can cause withdrawal or don't want to have to take something every day, you may be better off with some other insomnia treatment. But amitriptyline isn't psychologically adictive - well except that I feel so good on it I don't want to stop!

Hi everyone..I joined this group because I am always looking for something to help my severe anxiety..I wanted to see if it helped you all with anxiety too

Hiya Mary
Yeah I believe it's helped me. It tends to keep me calm, it certainly did on steroids!
xxx

Mary:) said:

Hi everyone..I joined this group because I am always looking for something to help my severe anxiety..I wanted to see if it helped you all with anxiety too

It definitely makes me less anxious, which took me by surprise because I began taking it only to help me sleep!

When I started taking amitriptyline I was already on prednisone, which was causing me to have all sorts of mood swings, including anxiety. The amitriptyline seemed to counteract the anxiety from the pred., but then I tapered off pred and kept taking the ami, and, as I said on my first post on this thread, now I'm calmer than ever. I'm more able to concentrate, I don't get restless and bored like I used to when I'm stuck in the house much of the time (I'm currently off work due to health problems) - I feel content just passing the time resting, reading, etc. whereas before (and especially when on prednisone!) I'd get so frustrated not having enough to do.

I also like amitriptyline's effects on my mood because while taking it I still feel like myself and in control of my emotions. With the mood changes that came with prednisone, even the ones that should have been positive (I experienced spells of "euphoria" fairly often when on it) unsettled me because I was aware there was no logical reason for me to be feeling that good. The moods felt fake and random and not really "me". With amitriptyline, I feel more down to earth, and my emotions are the same as I'd be feeling if I wasn't on ami. I can still feel negative emotions - anger, sadness, etc. - but now I'm able to deal with things more reasonably and put things in perspecitve. It makes me calm but doesn't deaden my feelings.

I expect it works differently for everyone, but definitely worth trying for your anxiety.

I've been taking Amitriptalyne for nine months now and it definitely works. I take 25mg at night. I have one question, is it covering symptoms that may need to be checked out. I mean I'm grateful that it relieves the cramping but I feel like it may be keeping me from having a true diagnoses. Does this make sense?

Goin to the GP in a moment to see if I can join da club, I'm constantly getting annoying headaches from the imuran, hoping this will do the trick

MsJason31 said:

I've been taking Amitriptalyne for nine months now and it definitely works. I take 25mg at night. I have one question, is it covering symptoms that may need to be checked out. I mean I'm grateful that it relieves the cramping but I feel like it may be keeping me from having a true diagnoses. Does this make sense?

Are you seeing a doctor or awaiting any tests? I take it you haven't been diagnosed with Crohn's yet?

I wouldn't have thought Amitriptyline would alter test results (colonoscopy, endoscopy, etc.), and it won't treat any inflammation there might be in your intestines, so in that sense it won't keep you from being diagnosed, though you should always tell the doctors doing any tests you have what medications you're on, just in case they do influence results.

I'd rather treat my symptoms than wait around in pain as the diagnostic process can take a while! You can still see a doctor about the problem, even when you're treating it yourself at home. Amitriptyline is just stopping you feeling the pain, it isn't treating the cause so there's still good reason to see someone about it. I presume you've been prescribed amitriptyline by a doctor, so you must have reported the cramping then? Have you been referred to a gastroenterologist? Just make sure when a doctor asks you about your pain you inform them that it was worse before you started on the medication. It may actually be useful for them to know amitriptyline is helping, as that may give them some clues about the cause of your pain. (Amitriptyline only works on certain types of pain.)

UnXmas, I am undiagnosed, and have been for almost two years. I have seen three different docs including the IBD clinic in Vanderbilt. They are the ones that prescribed the amitriptalyne. It works fine 80% of the time. I will have pain break through at times.

MsJason31 said:

UnXmas, I am undiagnosed, and have been for almost two years. I have seen three different docs including the IBD clinic in Vanderbilt. They are the ones that prescribed the amitriptalyne. It works fine 80% of the time. I will have pain break through at times.

I guess you know all about diagnosis taking a long time then. I went undiagnosed for many years. I think if it were me I'd continue taking the ami. if it's helping. I hope it continues working for you.

It's defiantly not working today or the past two days to be exact. Do you have days that the pain comes through the ami? Along with the nausea, indigestion and gas and bloating.

MsJason31 said:

It's defiantly not working today or the past two days to be exact. Do you have days that the pain comes through the ami? Along with the nausea, indigestion and gas and bloating.

I don't really take it for pain. I don't have that much pain, and when I do I take codeine for it. I take it for insomnia and anxiety, and although I've not had a day when either of those were anywhere near as bad as they were before I was on ami., there is still some variation in how deeply I sleep and my anxiety levels.

Perhaps you're having particularly bad pain at the moment, so that even with the ami. the pain is noticable, rather than the ami. no longer working?

UnXmas said:

I don't really take it for pain. I don't have that much pain, and when I do I take codeine for it. I take it for insomnia and anxiety, and although I've not had a day when either of those were anywhere near as bad as they were before I was on ami., there is still some variation in how deeply I sleep and my anxiety levels.

Perhaps you're having particularly bad pain at the moment, so that even with the ami. the pain is noticable, rather than the ami. no longer working?

That makes sense. Everything seems to be better this morning, that would be such a welcome relief. I do have hydros, in fact I took 2 1/2 pills yesterday along with zofran, bentyl and tums. Did it take them along to find yours if so how long? I just don't understand why they can't find it, this has to be more than IBS.

MsJason31 said:

That makes sense. Everything seems to be better this morning, that would be such a welcome relief. I do have hydros, in fact I took 2 1/2 pills yesterday along with zofran, bentyl and tums. Did it take them along to find yours if so how long? I just don't understand why they can't find it, this has to be more than IBS.

Do you mean how long did it take me to be diagnosed? Over ten years! But I was a very complicated case for a number of reasons. It's a long story.

What other symptoms do you have besides pain? What tests have you had?

Is the amitriptyline working again now?

UnXmas said:

Do you mean how long did it take me to be diagnosed? Over ten years! But I was a very complicated case for a number of reasons. It's a long story.

What other symptoms do you have besides pain? What tests have you had?

Is the amitriptyline working again now?

In May 2011 I was awakened in the middle of the night with abdominal pain and what felt like gas that I couldn't pass. It got increasingly worse and I went to the er. They did a ct with contrast and the er doc came in said you have crohns go to a gi doc here is some pain pills along with cipro. Needless to say I was back the next day. My stomach was so dissented I looked like I was 9 months pregnant. They admitted me, I was there for 9 days during that time they did an upper and lower scopes, of course they did them both seperatley so i got to do two clean outs, ct endography, numerous X-rays. When I got out the same doc did an MRI endography and a pill cam. The MRI showed a gallstone and the doc didn't want to do anything with it. The doc lost my pictures for the pill cam and then he miraculously found them and he said that didn't show anything. But I'm not sure he really found my pictures. Needless to say that s when I changed doctors. The new doc removed my gallbladde, did a breath tet to check for bacteria over growth- negative, did a promethious test- negative, checked my poop, did another ct endography and then they sent me to Vanderbilt. Let me back up after the ct at the hospital the radiologist said it was crohns and the hospitalist sent me home with pantesa and steroids. When I went for the follow up is when the other doc said no crohns. Vandy scoped me again up and down and it came back negative. The doc at Vandy said that I had a major insult to my small intestines and that has caused me to have IBS. She wanted to do a pill cam I Said I quit. She put on ami and here I am.

Do you have the option of seeing any more doctors? I had to go through several before I found ones who took me seriously. Being dismissed with an IBS diagonsis seems to be something many people experience before going on to be diagnosed with Crohn's. So many things can cause the same digestive symptoms, so diagnosis can be difficult. Getting back negative or inconclusive test results seems to cause some doctors to assume there's nothing wrong.

Did the steroids help you at all? If they did, that would support a diagnosis of Crohn's or similar conditions. Do you have copies of the CT results which showed Crohn's? It might be worthwhile seeing if you can get copies so you can show them to new doctors without having to go through more testing.

There are some good doctors out there. I found you have to find a balance between pursuing a diagnosis and giving yourself time off from having to deal with doctors.

So at the moment Apparently i have inflamation of the TI . I have constant LRQ pain and headaches , sore joints , weird intermittent skin things on my knuckles. A red eye every couple of weeks and now Im enjoying hip pain that would put a toothache to shame !
Amitriptyline is the only thing so far to help with the pain ( head aches and it helps me go to sleep ) for that Im grateful. As ive been on Asacol now for 2 years and it works for me to a point . But both are not doing a bad job at all , or beast of a bad job.
I had to go up to 50mg for it to be effective and it took a while but I get blissfull sleep with it , so I can put up with most stuff during the day .
Peter

PVail said:

So at the moment Apparently i have inflamation of the TI . I have constant LRQ pain and headaches , sore joints , weird intermittent skin things on my knuckles. A red eye every couple of weeks and now Im enjoying hip pain that would put a toothache to shame !
Amitriptyline is the only thing so far to help with the pain ( head aches and it helps me go to sleep ) for that Im grateful. As ive been on Asacol now for 2 years and it works for me to a point . But both are not doing a bad job at all , or beast of a bad job.
I had to go up to 50mg for it to be effective and it took a while but I get blissfull sleep with it , so I can put up with most stuff during the day .
Peter

I see you were recently dx, how long did it take them to find yours?

UnXmas said:

Do you have the option of seeing any more doctors? I had to go through several before I found ones who took me seriously. Being dismissed with an IBS diagonsis seems to be something many people experience before going on to be diagnosed with Crohn's. So many things can cause the same digestive symptoms, so diagnosis can be difficult. Getting back negative or inconclusive test results seems to cause some doctors to assume there's nothing wrong.

Did the steroids help you at all? If they did, that would support a diagnosis of Crohn's or similar conditions. Do you have copies of the CT results which showed Crohn's? It might be worthwhile seeing if you can get copies so you can show them to new doctors without having to go through more testing.

There are some good doctors out there. I found you have to find a balance between pursuing a diagnosis and giving yourself time off from having to deal with doctors.

I am on my third doc, and yea I could change again but I have been to the IBD clinic at Vandy and they even dismissed me as to having IBS. The doc at Vandy said I had a "major insult to my small intestine". Someone really needs to explain that to me because I can't find out anything about that. She even did a scope on me, she was the one that found the skin tags on my hiney and said that the fact that had a gallstone and I had to have my gallbladder removed and liver enzymes were up and down during my attack were signs of crohns but she does not think I have it. Go figure. And yes the steroids helped. When I was in the hospital I had a partial blockage and the steroids reduced it. My first ct without drinking the gooy stuff just the contrast through my veins showed swelling in my small intestine and in my ti. Then I had a ct endography done and that really showed the blockage and swelling in three different places in my small intestines not to mention my ti. And that was after 4 or 5 days on steroids. I went to see my gp on Monday, I had a low grade fever and my sed rate was elevated. But the rest of the blood work was good even my liver enzymes. I go see my gi this Monday. We will see what they say, it's been a while since I have been. Over the testing.

MsJason31 said:

I see you were recently dx, how long did it take them to find yours?

Well it took almost three years of phoning ,argueing and basically not giving up in the hope of finding something that would explain why my life changed.
Never give up , even if its just treating symptoms as this too can help in diagnosis apparently.

Peter

Regarding Amitriptylene (which I use myself every night) I have just read an article in the magazine of the Crohns and Colitis UK group. It makes clear that high doses of Ami were used as antidepressant. Now it is well recognised that pain relief is achieved in smaller doses and it also slows bowel function. Together these things give me a nights sleep. Confusion arises because Ami is only licensed as an antidepressant, because the manufacturers patent has expired making the drug very cheap. Therefore there is zero incentive for the drug company to apply for a new license and the medication leaflet does not address the real uses and benefits of Ami to those of us with Crohns.