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 think I was in complete denial when I was diagnosed last Friday. Since the first day, I just don’t recall having a virus or anything to bring this on, I was sick once and I just couldn’t recover, nearly 7 months later I have a diagnosis.

It seems I am suffering cfs, I can’t imagine myself to actually feel normal again, I lay in bed on my bad days feeling worse about myself, my 5 year old needs me at my best and I’m just not and I feel I have more bad days than good, luckily my husband has been amazing.

Yes I have a stool to sit on in the kitchen, I’ve only been cooking again for the last maybe 2 weeks since this all started as I was really bad at the beginning. I think because it hasn’t gone, like a normal ilness your back to yourself within a week, I learnt to try and get on with things although you crash for days after.
It was Friday I had an appointment so I was up and ready nice and early so afterwards we popped to some shops, and I picked my son up from school and went for a coffee at my sisters, I definitely over did it. I was ok on Saturday, but yesterday and today I’ve really felt the effects.
Can you make a full recovery at any time? I still find it’s something I don’t really understand?

Some people do recover, as far as I know.
It must be so hard with a young child, I'm sorry. I don't have kids and won't now, not just because of the illness though. Have you been referred for occupational therapy? I got it through the local CFS/ME service. Not a cure but helpful in learning to pace etc.
I've found some of the supplements recommended by Dr Myhill helpful. Worth a look. She has a website and a book that has the same info but in an easier form. Called mitochondria not hypochondriac or somering similar.

The way I see it, some disagree, is that ME is a set of symptoms rather than one specific illness with one specific cause. So some people say "ME is caused by mercury fillings, because I had mine out and I recovered" others say similar about lyme disease or a number of other things. All of them cause a similar set of symptoms. Some are also misdiagnosed and actually have a deficiency or illness such as being coeliac. It's a complicated illness :-(

It’s hard for anybody but having a 5 year old son is quite challenging, I mean it’s not really bad as my husband takes him to school, and picks him up from school and just works school hours he’s self employed which helps as he can work around things.
I think I’ve picked him up 3-4 times since September 😔. The worst times will be school holidays, the years go so fast, 6 week holidays will be a challenge. Since my diagnosis I haven’t seen my doctor. It was my endocrinologist that diagnosed me, & told me to fetch my prescription of Amitriptyline from my GP. I need to make an appointment but what do I ask for to help manage this? Coeliac can that come on later in life? It’s a lot to take in, and an illness I don’t understand. I was also very out going and close with my sister, she doesn’t understand it I’m not sure she believes it.

Find your nearest CFS/ME service and ask for a referral. My doctor told me about it - I didn't know such things existed - but if yours doesn't suggest it then ask. When I was referred they required a raft of blood tests results to be sent with the referral, which in itself is a useful starting point. You can be diagnosed coeliac later in life - not sure if it develops or goes undiagnosed but I know someone diagnosed after their child was.

From my experience the fact you were busy and active and outgoing and suddenly stop being so helps people realise there really is something wrong.

It's early days for you though, things will improve. Your health hopefully, and if necessary your life and way of working with it to achieve the most possible will. I'm glad your husband is so supportive.

Thankyou. I will get an appointment with my doctor as soon as I can and try and speak about this. I’m having another better day today, I went to my friends for an hour and had a coffee with her. I’m now home feeling like my eyes have been dipped in chlorine 😔. It’s early days, but It seems ages ago since I was ‘well’.

Have you ever tried anything for the dizziness/light headedness that works?

I used it as a muscle relaxer following surgery for years. Take it at bedtime because it can make you very drowsy, also prepare for the weight gain.

I put on a stone with amitriptiline and it also gave me a huge appetite.

Isitweekendyet - yes I’ve noticed the drowsy ness, I didn’t realise it made you gain weight, but then again I’ve noticed the appetite changing. I constantly want to eat.

Have you ever tried anything for the dizziness/light headedness that works?

Not really, sorry, just resting when necessary and living with it I'm afraid. Though not skimping on salt and making sure to drink plenty is meant to help if it's low blood pressure related. I do both, but no idea if they really help. Low gi diet and eating regularly help energy levels too.

@MrsGxx how are you now? Xx

My dr wants to put me on this. Was diagnosed with Bell’s palsy after going to drs in pain. Took steroids but didn’t make any difference after I came off them. Getting pain in right side of face. Had this after second child and pain went one day overnight but this pain is getting me down. I’m scared it could be something more sinister. Anyone else get face pain? Does the amitriptyline help at all? The paracetamol and ibuprofen work for a little while but becoming less effective

My husband and I have both had to take this and it worked the same for us both in terms of side effects. The first week or so we were incredibly drowsy. My husband took one, went for coffee and spent the morning trying to lift his head off the table. He switched to night time and the drowsiness passed enough that he didn't notice it during the day. Same for me. I had to take one during the day recently and still, the grogginess and palpitations are unpleasant. How well it works for your situation I don't know but good luck!

@Lushmetender i am taking it for facial pain. U may need to up it till u get to the right dose x what mg u on? Xx

Hi it’s a suggestion from the dr and ill see them on Tuesday. With how sore it is I think I’m willing to give anything a try.

Starrr123 / they’re suggesting to start on 10 mg and up it after 5 days. What is causing your facial pain? Saying mine is trigeminal neuralgia-I hope something works as I’m struggling at the minute with the shooting pains.

@Lushmetender they are saying the same to me!
Its soo annoying !
How are u finding it ?
Do ur teeth hurt? And what caused yours? Xx

Yes teeth, tongue, chewing, severe ear pain last night. Constant headache. First time for amitriptyline tonight but not sure what will happen. Think I banged my cheek on the car but I was a bit all over the place due to mother dying so dr says it might be stress. Don’t know

@Lushmetender oo i am so sorry to hear about your mum :(

Stress is definitely a trigger! Mine started either from having covid and being pregnant with stress :(
The ear ache is the worst :( i hope it helps you. You may need to up it till you get to the right dose. Please message me if u need a chat or anyrhing x

Thx. Interestingly I had something similar after birth of second daughter over 10 years ago. It lasted 6 months.

@Lushmetender oo really?
Thats weird isnt it? Maybe its hormone related?
Since ive had a baby uve had auch weird symptoms xx

Startr123 trying to have toast and it’s the most sore I’ve had with chewing - you getting that?