Amitriptyline

New diagnosis and before diagnosis
1

Hi, I’m new on here and wrote a post before about what I’ve been experiencing. In a nutshell, I started with numbness in the left side of my back just over a year ago. Over the last year, it’s spread to the right side of my back, through my left shoulder to my left arm and fingers. It’s been a steady and continuous progression.

The last 2 days have been really awful. My left arm is weak, numb, rubbery and heavy and I have pain from the base of my skull down to my left wrist. The weakness is significant and I can no longer open bottles or jars or pick up my 13.5 month old baby!

I went to my GP as I couldn’t cope with it anymore and paracetamol wasn’t even touching the pain. He prescribed me codeine and amitriptyline. I don’t mind taking the codeine as I’ve had it before during my pregnancy for SPD and I can control how much I take as and when I need it.

Amitriptyline makes me nervous though. It’s a strong drug. He’s only prescribed me 25mg to start with but that’s a fair starting dose. There are soooo many side effects and I know you have to wean down to come off it. I don’t know whether to start taking it or not.

I had an MRI of my cervical and thoracic spine a few weeks ago and will be getting the results on 8th Jan, so don’t know whether to start before then, when I have an appointment with the Musculoskeletal Clinical Assessment and Treatment Service (MCATS).

The GP suggested it was unlikely to be a trapped nerve, as was one possibility for the cause of my trouble, and that after the results I would probably need referring to a neurologist for some nerve conduction studies.

Should I start it before these tests? Will they not skew the results? On the other hand, it could be months before I go for these tests waiting for referrals and appointments etc.

Any advice from anyone who is on Amitriptyline or has been is welcome. If anyone has experienced side effects, how bad were they? Should I start now or wait a while?

Thank you for you advice in advance.

Natalie

2

Hi Natalie

Poor you. It’s so frustrating…I’ve got Amitriptyline too, but the first time I took them they gave me rather gruesome nightmares - I don’t watch horror movies, so I was a bit shocked. No other side effects though, apart from sleeping late. Will they skew your results?..Not sure. I made a conscience decision NOT to take them for exactly the same worry. I am under a neuro dept, waiting…waiting…All I can say is only take one when you really need it, and try to take a break from them for a few days. Let’s face it - NO drugs are innocent. They all take a chance in some way or another. If you don’t already have an appointment for tests, I would suggest just take one Amitriptyline, and see how you go. You can’t wait indefinitely with all those symptoms. We wouldn’t treat a dog like that, after all. Would we???

All the best, and I hope you get some answers very soon.

Ali

3

Hi Natalie I was diagnosed in September and take amitryp. No side effects for me only very positive results. Or they were until I went and got flu and have been feeling like death for the last two weeks. Am just coming out the other side now. But amitryp def works for me. Am only taking 10 mg at night though. Xx

4

I doubt that codeine will do anything for your pain - neuropathic pain doesn’t respond well to standard painkillers :frowning:

Amitriptyline at low doses can be very good for neuropathic pain though - a lot of people with MS swear by it. It does come with a lot of potential side effects, but I’m afraid all of the standard meds used as neuropathic painkillers do :frowning: The good news is that these normally wear off after a while.

If you are concerned about trying it, I would suggest that you start with a half pill (or ask for a lower dose prescription). Amitriptyline can make people very drowsy so it’s normally best to take it in the evening (not at bed time else you might not wake up till very late!). A half pill probably wouldn’t need titrating down, so if you try it and can’t put up with the side effects, then you could probably just stop.

As far as the nerve tests go, just tell the neuro that you are on amitriptyline (if you choose to take it). They will take it into consideration if necessary. I personally wouldn’t put up with pain on the small chance that I might get a nerve test in the next few months (there will be a waiting list to see a neuro, he/she may not send you for a nerve test, but if they do, there will be a wait for that too, during which time you can always come off amitriptyline if it’s deemed essential).

Karen x

5

Hi Natalie

I was started on amitriptyline early Oct (before my dx which was late Nov). I was told to take 10mg at night for the first week and increase by 10mg each week until I got to 50mg, which is what I take now (although I’ve been told I could increase to 70mg if I feel I need it). I usually take it between 8.30pm and 9pm - sometimes I feel a bit dopey in the mornings but not too bad - and I drink a lot of coffee which helps. The thing I notice most is that I have a very dry mouth, but that’s not too bad considering how it helps with the pain. Occasionally I have strange dreams, but odd not scarey. Like you, I was reluctant to take it - the consultant had suggested it previously and I’d declined. By October I was desparate for some help and felt I had to do what was being recommended - overall I’m glad that I did.

Hope that helps and that you soon get some answers,

Hazel

6

Hi, I`ve been on amitriptyline since 2000. I swear by it as a nerve pain blocker…for me anyway.

I also started on 25mg a night. It did give me 12 hours of really good sleep. But it didnt stop the nerve pain when awake, until I`d got up to 100mg!!!

I dont think it could be so wise for you, having a wee one to care for.

I take 75mg a night now and it has kept that excrutiating bum cheek and back of my thighs pain away.

It doesnt do the sleep thing now tho`.

luv Pollx