Advice on Amitriptyline?

[MrsGxx]

My doctor is putting me on 10mg Amitriptyline, minor cfs symptoms, headaches etc.. any advice on when to take them and roughly when il feel the effects?

I actually don’t suffer any pain, & I am trying to find the right time for me to take the Amitriptyline. I took it at 9pm last night and wanted to sleep by 11:30pm (ish) I’ve taken it at 7:30pm tonight and I’m not feeling any effects at the moment.
All of the cfs story’s I have read, I don’t feel like I match them, lots of people tell me they are in pain etc and my Endo doctor also said most people have pain with it but he diagnosed me with it and said very low end of the spectrum, although I feel like I have the ‘I can’t be bothered’ to do anything as I know if I do I have no energy so I tend to want to lay down.
Can cfs make you feel light headed? I’m not sure if light headed is the way to explain it as I don’t feel as though I’m spinning etc.. I just don’t feel myself, no energy mainly x

Yes it is a shock, I think I’ve gone through the “why me?” and “my life is over” stage and have stopped making myself worse by trying to push through it. On a good day I have acceptance, I have many down days and spend a lot of my life on the sofa but I’m eating clean, aiming for a couple of 10 min gentle yoga stretches a week and trying to keep myself feeling as good as possible.
Hopefully the meds will allow you some much needed deep sleep so you can feel a little more human, accept all the help offered -esp with looking after a lively little one-and don’t stress about needing to do stuff, learn to pace yourself and look after yourself

I was given amitriptyline when I started needing it for nerve pain. I used to take it about 8pm, and went to bed around 10.30pm. It did help the pain but the groggy feeling all morning was so difficult to cope with, especially having to be up to take children to school and then on to work. I really didn't feel properly awake until after midday. After a consultation with the pain clinic they advised me to ask the GP to change to Nortriptyline (a "cleaner" version of amitriptyline. I take 50mg a night and it is far far better, although the dry mouth is still there. I'd say try it, if it helps but the side effects are a problem, then ask about Nortriptyline. Good luck!

Have you had your b12 levels checked? B12 deficiency is sometimes misdiagnosed as CFS. Waking up tired no matter how much sleep you have had is quite a common sign of it. It can also give you brain fog, breathlessness, nerve pains, sore or smooth red tongue, palpitations etc etc etc. There's a very long list of symptoms!

I take occasional amitrip for joint pain and take it about 8pm otherwise I find it very hard to get up in the morning. It doesn't make me go to sleep but it keeps me asleep. Also gives me constipation though so I don't take it every day!

Husband and Dd (17) have both had amytripyline. DH had it for a trapped nerve in his neck - worked fine - no side affects. DD (same 10mg dose for chronic knee pain) finds it makes her groggy and gives her terrible nightmares.

Bringbackthestripes - yes I feel exactly that way it’s almost hard to accept the diagnosis I’m mainly in bed. I haven’t managed the school run since they’ve been back in September (this started August) during the 6 week holidays.
I’m trying to eat clean, and do bits when I can. I feel like such a bad mother. He’s 5 and he understands a lot and he’s noticed it’s mainly him and daddy doing a lot and that I’m in bed most part, or on the sofa if I can manage it. I missed his assembly this morning he got a certificate 😤😔

Regarding the Amitriptyline, first night I took at 9pm but that was too late for me, I couldn’t wake up yesterday. Last night I took at 7:30pm and I didn’t sleep until gone 11pm but I did wake this morning at 9:30am and managed to put on a load of washing and clean around, plus make my bed and get dressed which is a first.

I believe I’ve had no side effects as of yet, possibly the dry mouth but it’s not been terrible.

Petulia - I am going to ask for a retest of bloods with my gp so I will update on levels when I get results x

Also taking 20,000iu vit d twice a week, for 7 weeks I am nearly finished and then a daily top up will be needed.
I’m not sure what I can do/take over the counter vits especially b12 to try boosting me as I know the over counter ones are very low

Like a lot of these things consistency and time is the key. I think there is danger of taking it and sitting back and waiting for it to work. Being ‘conscious’ of it sort of works against you if you see what I mean,. It took me about 2 weeks to get them to work once I started to take them daily. At first I was just taking one or 2 when I thought I needed them. In hindsight that was a mistake,

I take a daily B12 and Also Vit D as both of these came up low on blood test. I have started to slowly gain weight now, previously I had no appetite and went down to just over 7 stone. Although I am short this was too little.

I was prescribed vit D by my gp for 7 weeks and was then told a daily top up would be needed but just over the counter ones are fine. I know lots of people who have said the normal range for doctors is still classed as too low. I’m just cautious of taking b12 or something without advice first.
I’ve had to do a lot today more than I’ve had to do or done in weeks/months. I’ve had to go to Asda and get some bits and also pick my little one up from school and come home to cook tea. Normally I’m home all day resting or doing light housework and I have the energy to just cook tea of an evening, but I am finding my eyes feel like they’ve been dipped in chlorine since I’ve been out and come home. I’m now cooking tea but feel rubbish 😫 think I’ve over done it but I know exercise is good. Also, where my thyroid is (front of throat) feels ‘heavy’ and my voice is shaky after activity is this normal? I think since having cfs I’ve paniced a lot more x

Agree with springlike - Nortriptiline has the same effect as Amitriptiline but with far fewer side effects. I don't feel hungover in the morning on Nortriptiline, I've been taking it for 4 years for IC pain. Ask your doctor for it if the grogginess persists!

I have fibromyalgia and take 10mg at 6pm, I can get up at 6am (usually 7am) for the school run. It's helped massively with my sleep and because I sleep better, I'm not in as much pain throughout the day. I've found it's also helped my moods as I'm no longer constantly tired

Another thing I've found is that my fitbit tracks my sleep (I'm not plugging fitbit, just making a point) and I've noticed that I have hardly any deep sleep, almost all light and some REM.

I found that it takes a bit of shuffling to find the right dosage and time before you hit the sweet spot

This is really interesting, I've been taking 20mg to help with recurrent facial pain, but I have just been recommended to up this to 70mg a night...that sounds a lot doesn't it??
I am concerned how that will impact me in the mornings, interested people say take it earlier in the evening. I think I will try this.
One GP I saw also said it was tricky to come off...ironically the one who originally prescribed didn't mention that...

I'm taking 35mg for chronic daily migraine, the only side effect has been dry mouth and it makes me sleep really well!

Of course helping with the head pain has been the biggest positive - it really has been a miracle drug for me after trying many others.

Thanks for all the replies, I find I’m not getting a dry mouth, or any side effects of my 10mg. My gp did say he will up my dose within 4 weeks if I find I need it. I need to find the right time to take them. I think 7:30pm has worked for me I’m wanting to sleep around 930-10:30pm which is a nice time. I’m not taking it for pain x

Yes I take mine at 7pm and start feeling sleepy by 9.30pm!

For cfs/me sufferers do you feel better lying down? I feel so much better when I’m laid down x

Yes, reclining on the sofa with my feet up. Sitting upright is too difficult and exhausting.
.

I feel as though all my symptoms disappear when I lay down, I’m trying to exercise daily. Just small walks as all the lying down and how inactive I have been, I’ve got a dvt which turned into a p.e.

I’ve had my 5th day on Amitriptyline last night and I’m getting some vivid dreams 😬 only side effect I’ve noticed I’m having. I’ve still also not fount the right time for me to take them, although for the past 2 days, I can’t seem to wake up. I wake up absolutely shattered. Any advice?

I've taken it for about 5 years for sleep ME/CFS. I find it takes a good 12 hours to wear off but without it I really don't sleep - perhaps I am addicted to it to a degree now but I needed it when i started it and it seems to still work.

Did you post on another thread about feeling because you're not in pain it can't be CFS/ME? Pain isn't one of my main symptoms, apart from headaches and migraines, and some aching joints if they get particularly cold or over used. yet i was diagnosed as a classic case by my local CFS/ME service. I've been badly affected for 6 years. Technically "moderate ME", but I can't read books for migraines, use a mobility scooter to get around outside the house (I'm 35 and used to be very active), have difficulty showering, cooking, thinking, talking at times, a million things. Light head and dizziness has also been a long term symptom of mine, certainly help by lying down. I went through a period of having to lie down pretty much all the time - got up once an hour to get a drink or visit the loo etc, pin the advice of my doctor, but sitting for more than a few minutes made me very light headed. That thas imprtoved, though i can't stand for long (usually use a shower seat eg).

I should add I'm quietly content with my life at the moment, with lots of sleep and careful pacing, DP does a lot for me, and I do craft things to keep myself sane.

Pacing is key - learning your limits, learning how to use you energy in the best way, learning how to gently push what you can do to male gentle improvements.

Good luck.

Wow. Thankyou for the advice, I’m sorry your suffering the way you are.
Yes, I did post that after researching I fount pain wasn’t a lot of some people’s problems.
Mine is dizziness, light headedness when I sit upright laying down generally makes all my symptoms disappear. I don’t know how I keep myself sane. I’m ok with showering, bathing and cleaning some days. But today and yesterday I’ve been terrible and just wanted to lay down most of the day. I also find the more I sleep and stay in bed the worse I feel but if I get up I want to lay back down, I can’t seem to win. Although when I do have a good day, I manage to do a few things like clean, pop to a few different shops, drive & pick my son up from school but I’ve fount I need to rest a lot for days afterwards. I think my husband has realised the more I do in the day, I can’t then cook tea because I’m to tired. I’m learning how to pace wisely.
It’s such a horrible illness.

Thanks. Yep, feeling up to doing more one day (or having to force yourself to do more) then crashing the next few days is very familiar. Learning when to stop is frustrating but is key. I had it described as thinking of the stopping distance of a car - if you put the brakes on early enough you don't hit the wall. If you put them on too late, although before you've crashed, you'll still skid into the wall. You have to learn to put the brakes on in time, before you feel tired, then you can have a bit more energy for later/the next day.

Do you have a stool to sit on in the kitchen? Helps to adapt things a bit to make the things you have to do easier. If you feel the need to lie down maybe factor it into a routine - x mins lying down rest every y hours? Plan pre-emptive rests to allow you to do more overall?

Mostly though, its early days and my understanding is if you really let your body rest and recover at this stage you're more likely to make a full recovery. Says she who went back to work on a phased return after a couple of months off (I started wirh a virus) pushed until she was in tears driving in because of complete exhaustion, shaking with it by evening, then over the course of an afternoon after a few weeks of that got hit by cant-stand-up dizziness and completely crashed and now I'm still much more disabled by it than I had been. I guess I was pushing and pushing and riding the wave of adrenaline/stubbornness/pig headed refusal to give in and when the wave broke I was completely broken too. Good luck.