Wanting to come off amitriptyline

Hi everyone.

I've been on amitriptyline 20mg since april 2014 for migraine & sleep problems. I now want to come off the medication. After reading nightmare stories from members experiencing terrible withdrawal symptoms, i am so scared to come off them.

However, i really do want to come off them. Can anyone give me advice on the best way to do it please.

Any advice is greatly welcome.

Thanks, stephen

Hey Stephen.

Did they help your condition? are you Migraine free these days?

I would talk to your doctor about comming off them, they may suggest dropping down to 10mg for a few weeks first.

Hi Stephen

Myself and a couple of others have gone into detail in the 'Want to taper off

Amitriptyline' discussion on this website. Each of us is handling coming off

in a different way. I'm currently doing ok on 17.5mg after being on 50mg for

25 years. Due to cut it down to 15mg in a couple of weeks. I won't go into

detail here as it 2.40am here. You will see a fair bit of info on that other

thread.

Good luck

Hello Stephen, even though I have been on it for five years, my own experience seems different to everyone else. It seems very much a case of individual response or reaction. Some people seem to have done it gradually, others "cold turkey" (my case). 20mg is nothing. I doubt very much you'll have severe withdrawal... and if you do, just start again. It won't be the end of the world. Good luck. Rose

If you do not have migrains any more it could be the Amit. Doing its job. 20 mg. is a very low dose. Try going to 10mg. Your pharmacist can give you the best info. Amit. Is an old tri-cyclic antidepressent that is now placed in the pain relief catagory. I cannot tale any opiods, nerve pain meds, the only pain relief is from amit. I have a pelvic nerve problem. Do not go on cymbalta. It is the evil drug from hell that could take a miserable sickly  year to get off of it. I was given it for additional help for pain and it did not work. I had been on citalopram in the morning with no noticable negative effects.  I am now caught in an awful place of getting cymbalta out of my ststem through a step down. I thought when i finished the last pill i was ok. The withdrawl problems keep breaking through. It is still giving me problems, like dizzy, nausea,  i had blackouts while taking it, one time driving, skin scales, puffy face, lose of memory, hard ro talk and consentrate, every horrible side effect. Although  i am still on 75mg of amit. the  cymbalta in my brain it is over riding my  Amit. I have been off of cymbalta for 6 weeks. What is the doctor going to give you as an alternative. The amit. Is about as any lacking in having ptoblems. I have taken it for 26 years. The other good thing about amit. it helps with sleep. 

Amit. is not a scary antidepressent. The ssri and snri are the ones i do not want to take. I actually used it take amit. and  citolapram to stop migraines. 

I would talk to your doctor about what will you take instead of Amit. Any of the other antipressents can cause more problems. 

I am not understanding why  people are wanting to stop Amit., unless you are having negative effects. 

If you found a pill to make you feel better it is ok to stay on it. Your doctor can monitor for any problems. 

I do not metabolize meds normally and had a genectic study to help with the meds. Also you have to watch the pill reactions to each other. You can find websites to do that. I have a med. doctor who keeps track of them. 

Just like a diabetic or a person with high blood pressure may take pills the rest of their lives you can do the same with antidepressents. The reasons for taking it are not going to heal, like an injury. 

Hi guys & many thanks for your wonderful replies.

It has been a while since i had migraine.

Before amitriptyline i was suffering terrible migraines, althoigh i was sleeping i felt like a zombie throughout the next morning - very lethargic & no energy.

Amitriptyline has done good for me. During the past 2 months though i have been waking with very heavy eyes that has lasted all day. I thought that maybe now its time to come off . However last night i took my tablets at 6.30pm instead of 7pm. After a hour of tired eyes this morning i now feel ok. I will try taking the dosage at this new time & see how i get on this week.

But, if i'm being honest i do feel like i want to come off them & maybe try an energy boosting multivitamin instead.

Hi Stephen,

I agree that Ami has possibly helped me with pain and has

definitely helped me with sleeping over the years but ultimately I

don't want to have to be on ANYTHING. My thought is that if Ami

can make you feel so rotten coming OFF it then what's it doing to

our brain and internal organs while we are ON it.

The less chemicals we have to take the better. I'm going to

persist and hopefully come out the other end much healthier and

maybe even more awake 😊.

Good luck to us all.

hello Stephen, I totally agree with Sheena about preferring to be drug free. Not everyone can achieve that and therefore don't feel bad about it if you fail. After all, if you have diabetes you would not be expected you to come off your insulin.

I cannot comment on the use of Ami for migraine as I have never suffered it.

I think there is a certain amount of habit forming with Ami, in the sense that it stops working as a sleep aid for a while. In your case, it seems you are more drowsy. It's a bit of a mystery. Wish you evry success what ever course of action you take. Rose

Hello Sheena, I am pleased to see you still have your crusading spirit against AMI. You may remember that I have had to come off it for a while before starting on Trazodone. My sleep patterns have been greatly disturbed as a result, the consequence of "Cold Turkey" approach.

The first two or three nights have been a nightmare - dropping off to sleep for about 5 mins and then waking up startled because of horrendous dreams and, I think even hallucinations. Then wide awake for the rest of the night.

Days have been lost of course. I cancelled all my plans and appointments, falling asleep irresistibly in front of TV etc... generally feeling and behaving like an invalid. 

Last night I managed to stay asleep for about 5 hours from 2am to 7am. Triumph! But I cannot say that I feel great. I am supposed to stay off Ami for a forthnight now according to instructions. The doctor advised one week. I will follow the instructions on leaflet and maybe seeking advice from the pharmacist. 

Maybe by then I will successfully have restored good sleeping patterns and beaten insomnia! Nothing like a bit of positive thinking -as long as it does not keep me awake!!!!...

Today I will definitely try to stay awake by keeping on my feet all day. Hope never have to start on Trazodone.

Like you I am anti all drugs (if pos).

Have already lost one kilo!!!! Brilliant! Great incentive for me. It might kill me but who cares!!! Quality of life and good self-esteem is more important than sleep... Only joking really as being alive for my family's sake is far more important. I love them all so much!!!! 

Ideally is to have the good fortune to achieve all those aims: Good sleep drug-free, regaining a healthy weight and staying happily alive in the process!!! 

Wishing every success in attaining your own aim. I am sure the holiday will help. Rose

I understand where you are coming from rose about having to take medication for diabetes to use your example. I have had asthma since 1999 & as a result take the neccessary medication for it.

With regards my amitriptyline: prior to going on the medication i was first prescribed iron tablets by a neurolgist (ferrous sulphate) as my iron levels were low following a blood test as i was always complaining of headaches to my gp.

Whilst the iron tablets worked wonders & gave me fantastic energy, they also gave me terrible bowel problems. I weened myself off them slowly & felt good for a few months. Then, throughout the summer of 2014 i felt very sleepy all the time - even though i got my 7/8 hours sleep a night. I would wake the next morning & throughout the day be very lethargic, fatigued & zombified all day. I stopped swimming at this point as well as i just had no energy nor motivation to "get up & go."

So, i went to the GP & he prescribed the amitriptyline following the advice i saw from the neurologist back in oct 2013. He advised a list of 5 different medications. Amitriptyline was number 2 or 3on the list i think. The next medication after that on the list is epilim which i was told by an epilepsy nurse on a course i attended through work (i work as a support worker) that you only take epilepsy tablets if you have epilepsy. So if the amitriptyline has stopped working, this medication is next on the list & i am NOT taking that medication unless i am diagnosed with epilepsy.

So, after the usual 2-3 months of adapting to amitriptyline, i felt really good & did so up to these past couple of months. Now, coincidentally, i have been having an ear problem during that time (feels like permanent fluid in my ear). Im waiting for a referral to the ENT. Now whether its the ear problem that is causing the heavy eyes syndrome - i don't know! Or, could it be that the tablets &/or dosage no longer work or no longer needed. I have been back & forth to my GP about my ear. I feel worried about over bearing them again.

I apologise if this post is rather long winded, but hopefully it will give people a better insight into my current experiences.

It seems best to take the Amit., about 2 hours before you want to go to bed. I have been on the 75 mg. for at least 10 years and it has not deminished its effectiveness over that time. I am only going to take a small dose in the morning because of my pain. I have not felt any extra sleepiness during  the 5 days i have added 25 mg in th morning. These are not narcotics, so they are not physiologicaly addictive. 

So many people have trouble sleeping that it is better then a sleeping pill. 

If your brain does not make the chemicals it needs to keep you an even keel than the antidepresent is there to help. People should not feel any euphoria when taking them. Some times when you stop too suddenly the brain needs time to adjust. If it can, everyones chemistry is different. 

The newer ssri and snri are the ones, through my reading and experience that make withdrawal horrible. 

Since i have bad reactions from just about any meds i feel amit. Is my friend. 

Hi Rose

            I hope you've managed to get a bit of sleep since this post.  The messy sleep pattern is by far the biggest problem for me when I come off Ami.  I am in a much better place physically, mentally and emotionally than I was last time I came off so I do have higher hopes for this time around.

            Losing weight is definitely a huge incentive to come off.  Everybody says I should worry about my weight as long as I feel ok.  That's just it.  I don't feel ok.  I feel heavy and tired carrying this weight around all the time and it's NOT healthy.  I did lose weight very easily last time and I really hope it's the case this time as well.  Either way, getting medication free will be much healthier to start with.

If I keep reducing at the rate I am it will still be another 9 months until I am off Ami completely.  That's quite the opposite to your cold turkey.  AAaaaaa!!!  I'll be on this forum for ever sad.  At least I'll be taking less and less all the time and that's going to be a bonus cheesygrin

 

 

Ose, if I understand you well, you have been on amitriptyline for 26 years. That's amazing. You are right about taking something for life. No layman would dare judge you or advise you if you had to take beta-blockers or statin or warfarin and other life saving drugs. So why be suspicious of someone with depression or insomnia -which are conditions not obviously painful like a broken arm or life-threatening... like a neck injury or something. Because it is not immediately visible to the naked eye... it ist nevertheless very debilitating.

People who don't suffer are very quick to give their unsolicited advice on what you should do instead of taking a drug (healthy diet, exercise, food supplements, meditation etc...). How stupid of me not working it out myself in the first place!!!!...  It always irritates me to meet such people and I always wished I had not said anything. I want to scream at them they are so smug!

Even talking about these kinds of health issues to a doctor is no guarantee of being taken seriously and not being told very quickly about so-called self-help and life-style changes. Families are not always that helpful and supportive either.

I so sympathise with your struggles and particularly your reaction to some drugs. How one metabolises meds is very much a question of individual make-up. What suits one person is a poison to another! 

For me Amitriptyline at first made me feel wonderful and took me back to radiant good health. Like you, I wanted to be on it for life. But gradually I started to develop increasing side-effects, notably weight gain (that no amount of dieting or exercise could control). This was because, with taking Amit, I had acquired a sugar addiction without noticing it straight away, as it came on so gradually. I first noticed an increased appetite as I was frequently hungry. But this "hunger" was a very unhealthy way as it seemed I was craving sweet foods and carbs. If I did not eat sugary high GI foods, I bacame very agitated, faint and sweaty, shaky, like with an overdose of insulin for diabetics (hypo's). My weight escalated and then I began to feel unwell again. Too many episodes of hypos, too much weight, too much sweet food, little exercise -I felt too heavy to walk briskly and quickly got out of breath and yet too faint with this strange craving for sweet things. A nightmare. It seemed that I had swapped my insomnia for a greater problem of addiction and obssessive need.

Of course, I now know that sugar is a very addictive substance -worse than heroin!

I have now stopped taking Amit for a week and have already lost my appetite and nearly 2 kilos in weight. No more cravings and hypo's, but no more sleep either. It is a vicous circle. I am quite desperate really.

Glad that even after 26 years on Amit, you at least are still able to live a normal life. It does affect people in different ways. My hope is to find something that will work for me as it does for you. 

Best wishes

Rose

Hi Rose

I enjoyed reading youur post.  I have been prescribed Ami' for nightmare insomnia.  Not sure which dose is good for that, the doctor said to try 10mg or 20mg, any idea?  I have really bad anxiety that came after the insomnia, I'm guessing due to sleep deprevation.  It overrides the over the counter stuff like nytol etc.

Sorry to read of your weight gain, thats not what you want is it, how long were you on Ami?  Diid you CT?  

When you say it worked brilliantly for you "at first" - does this mean it wasn't so good after a while?

Thank you for any help & best wishes to you and everyone on the page smile

 

Hi Caron and all others with sleeping probs. My poor sleep was due to back pain, but instead of dealing with the root cause, i.e. the back  pain, was given a benzo - Nitrazepam. Yes, it helped with sleep, but that was decades ago. Now hooked on the drug which no longer works since the brain not only becomes used to it, but continues  to need more!

I want OFF drugs addictive or otherwise - long term they harm the body. Patients then end up with a coctail of other drugs to counteract the ones that have failed them! There has to be a better way!

My research on sleep deprivation led me to the body's natural amino acid called serotonin which governs sleep, mood, weight and a whole load of other vital bodily activities.

Not only is serotonin one of the body's essential amino acids it also regulates the other 8 or so amino acids - that's how important it is.

Lack of sufficient serotonin causes a brain imbalance leading to all sorts of disorders of the kinds mentioned in these forums - insomnia, anxiety, panic attacks, headaches, mood disorders, poor memory - the list goes on!

Determined to avoid drugs and find a less harmful way of getting better sleep, from my research on serotonin I came across a herbal supplement called 5-HTP (5-hydroxytriptophan). Triptophan is in some foods but it has to first convert to serotonin. Unfortunately most of this ends up in the gut, whereas amino acids need to get to the brain where they become neurotransmitters. This is where 5-HTP comes in, because it does get to the brain when taken as a supplement.

Since taking it 2 months ago when my sleep was a shambles of 2-3 hours a night, it immediately improved rising to 4, then 5, and I am now at between 6-7 hrs a night, without waking dozey or unable to think clearly.

And while I didn't need to feel calmer, it has made me feel more calm, clear headed and positive thinking.

And guess what, because of better sleep I am now able to VERY slowly taper off my Nitrazepam, having in 2 months cut from 10mgs to 8mgs, so roughly 1/4 mg per week, a lot slower than the Ashton Manual recommendation. It's working for me, with NO withdrawal effects.

I can't vouch 5-HTP for others, that's up to them to decide, but my experience corresponds with many others using it.

I tried Amit for both sleep and pain but it didn't work for me, in fact it made me feel panicky - something I'd never experience before, and certainly won't be trying again.

I keep reading of patients using Amit experiencing weight gain and sugar/sweet cravings. Well, another of 5-HTP's claims is to help reduce these cravings, so it can be used to help reduce weight when combined with a sensible diet. Double blind tests have proved its ability to do this.

So, for me, better sleep (much, much better), calmer, able to taper off a benzo and eventually become drug free. It's a no brainer!

 

Hello Caron, I assume you are talking about my post to Ose this morning. I have previously sent several post to several people because I have been on this page for a over a week now. If you can retrace some of them, it will tell you more about my struggles. Please read the ones I have exchanged with Sheena and Amanda.

Yes I did go CT. The only "withdrawal" symptoms as such was the immediate return of my insomnia!

 

Basically, I was on Amitriptyline for 5 years for what I would describe as severe insomnia (I stopped taking it a week ago today). Doctors think I exaggerate when I say "severe" or "chronic". They prefer to have the privilege of their own diagnosis or assessment of your symptoms."Trust me, I am a doctor. You are neither ill nor suffering. You are just a time waster, a hyponchondriac, an attention seeker etc..."

s not sleeping more than two hours a night and then feeling rotten all day, falling into depression, and spending most of your time trying not to sleep randomly and irresistibly during the day "severe" enough? During my time as a teacher I remember falling asleep at least on two occasions in the middle of a lesson... while sitting at my desk!!!! (thankfully not standing up!!!!). That's what happens to some long-distance lorry drivers at the wheel... with lethal consequences.

I would say insomnia is an illness like any other, and one that impacts and blights your life at every level!

I so understand your anxiety and other related symptoms.

All I can tell you is how I reacted to Amit. It is no indication of how you might react.

Yes, it was wonderful at first because I slept like a log, and after the inital drowsyness during the day, I got used to the med and the drowsiness disappeared, giving way to a wonderful feeling of well-being, wellness, clarity of mind etc... But gradually I started noticing I was putting on weight. Weight and dieting had never been an issue in my life. I was always very slim -effortlessly, and being naturally frugal with no "sweet tooth" or other indulgences.

Worse still when I became hungry on Amit it was not in a normal way. I would experience severe drops of sugar levels which, even after I scoffed two doughtnuts would affect me for several hours or, frankly ruin the rest of my day. I called them "hypo episodes". Again, after going backwards and forwards to my doc with this new symptom, he didn't take it seriously, putting weight gain down to age!!!! And sugar cravings and hypos to a figment of my imagination!!!! Adivising me to watch what I ate etc... a "balanced diet", as they say, and take up exercise and a new challenging activity to take my mind off it and by way of "self-help" etc... In other words stating the obvious and thereby, Insulting people's intelligence!

No one would understand that my need to it sugary foods and having hypos, it was both real and very bad for me. Like being on an overdose of insulin.

Blood tests showed normal sugar levels though, but I was sure that I had developped a sugar addiction, brought on by Amit and that what I was experiencing (the "hypos"wink was no more than withdrawal symptoms of sugar. Like and addict, I needed my shot every two to three hours. With no control over it!

The weight rocketed, the hypos got worse and I had no choice in th end but to discontinue the Amit.

Insomnia immediately returned but I was right about the sugar addiction and the weight. Even on the first day offI lost my appetite and any desire for sweet foods. Result: have already lost 2 kilos (8 more to go!). But the insomnia is killing me! I have become a bit of an invalid and a reclusive. Is this how I am going to spend the rest of my days.... obssessing about sleep??? and suffering the effects of sleep deprivation??? 

I have so lost confidence in the medical profession. I can't be bothered to go back to the doc. I am looking for other remedies (natural ones?) but i have already tried those unsuccessfully in the past, including melatonin (available only on the internet).

Dr Michael Mosley did a programme on insomnia last night (BBC 2, 9pm). He is very good and I am going to explore his findings for myself. Programmes like that are bringing the subject into public awareness and making it a real issue, worth taking seriously, quantifying and researching scientifically. So there is hope for the future generations.

Please don't let my account deter you from going ahead with Amit. Ose seems to be doing well on it. Many other people do too.

By the way, I found that Nytol was very quickly ineffective as a sleep aid and was also causing me anxiety, such as you describe, after using it.

Sorry this is so long. Please do look up the Dr Michael Mosley programme as it dignifies sufferers and gives hope.

This forum too is good for the morale and for the various tips people give you, and, more particularly, because you realise you are not alone. Thousands out there are havind the same struggles as yourself. It is like having a support group of like-minded sufferers! So, I hope you too will find the forum helpful. 

For me it gives me the chance to bang on about it (getting all my anger and frustrations off my chest), with impunity. I hope what I writes helps others too. Let me know all of you!!!

All the best with your new treatment Caron Don't be discouraged by what I write. You might be perfectly all right with it. Let me know.

Rose 

Hi Caron,

I tried to reply to your post about an hour ago. But it seems it is being moderated!!!

I honestly say nothing untowards or indecent or pernicious or inciting violence!!!! I wonder why it is taking so long???

Oh Yes! I know... the post itself was too long!!

So Caron, look out for it

I'll contact you a bit later agin

Rose

Hi will. Just read your post with utter fascination. Where do you get this supplement from. Does it work really well.

Hello Stephen, I have just bought some from Amazon. It has 5 star reviews from thousand of people! Supposed to arrive by tomorrow. So will let you and others know. Rose

Hi Stephen

I found the whole subject quite a revelation, of how serotonin and the way that it and other amino acids collectively run one's body via their neurotransmitting activities. I have no medical knowledge whatsoever, but it makes a lot of sense when you think about it.

However, a word of caution. 5-HTP may not suit everybody, just as certain drugs don't. It's natural (actually from the seed of Griffonia Simplificonia - an African shrub) but that doesn't necessary make it safe.

However, of all the test results I've looked at online none have indicated any side effects other than nausea in some people, and even that wore off after a few days.

Reviews are mostly positive, especially for sleep, mood etc.

I think it might help a lot of people trying to lose weight if they have sugar or sweet cravings. Obesity is on the increase everywhere. The cost to one's health and lifestyle, plus the escalating cost to state budgets to treat it make it (5-HTP) worth considering as a way of getting it under control.

I hope it is of some help to you and others who try it, but bear in mind my caveats about its use. Incidentally, I hope to also taper off its use once I've lost my dependence on Nitrazepam, but I'll have to wait a bit longer to reach that point.