Hi all, my name is Gemma and I’m a 32 year old mother of four from the UK. My facial pain started a few years ago with an intermittent sensitivity on the left side of my face, this would come and go and often not return for months. The skin would be so sensitive that even a light touch or breeze would be painful.
Around two months ago I had my first episode of sharp ,absolutely excruciating electric shock pains, the pain was in my teeth, gums, bones and flesh. I had no idea what was happening and sat frozen to the spot unable to even get the courage to swallow. This lasted around five minutes with aftershocks of pain for around a week after. I hoped it was a one off, a quick google told me my symptoms were typical of TN but put it to the back of my mind. Until yesterday that is, and the same happened as before only this time the after is more painful. My face is very tender now and the aftershocks more frequent)
Anyway I decided it was time for the doctors and I realise I’m incredibly lucky that my GP was very helpful, compassionate and informative. She has started me on 10mg of amitriptyline, I start those tonight. I’ve got to say though that I’m a bit worried and a bit sad. Partly because of the fact I need to be medicated, and I’m worried about the future and scared of future attacks. I class myself as having a pretty high pain threshold (four kids born without pain relief!!!) but this was something else and the thought of it happening mid meeting at work petrifies me.
Thanks so much for reading, i look forward to getting to know some of you.
I meant to say as well that I would be interested to hear from those that have taken amitriptyline and it’s effectiveness, side effects etc. I don’t normally like taking paracetamol etc, so this is quite a leap for me.
Welcome, Sorry to hear what you are going though…. I’m 31 and have had facial pain for several years, it is not fun in the least.
It is good though you are already basically diagnosed (that is half the battle!) the support here is great and Treatments options for this condition keep getting better.
I don’t have TN1, which sounds what you have, so my experience is a bit different. I’m sure other will chime in with what worked for them with medication.
However I can say Amitriptyline is used to treat neuropathic pain and I have tried it. 10MG is a good start, my doctor started me on 50MG and in knocked me out. Horribly Dry mouith,and I felt like I was a zombie. So I basically stop using it. I probably never gave it a fair shot, so It's best to start low and go up.
It takes a while for it to kick in, so if you get in more pain perhaps your doctor can prescribe something else more powerful in the time. Usually anticonvulsants seem to be used more for TN1 type pain.
Hi Joe thanks for the reply, yes my doctor said to start low and we’ll work our way up. I’m back at the docs in 4 weeks to review. Will I be able to drink alcohol whilst on them? I’m in no way a big drinker but enjoy the occasional night out.
I took amitryptaline when I was younger for a completely different reason (sleep problems and migraines) and I drank socially while on it and was fine. I’m sure the literature and all doctors will tell you not to, but they say that for every medication. Just take it slow and see how you do with it is my advice. I don’t drink at all anymore, partly because of all the surgeries and meds, and partly because I’m afraid it will set off an attack.
I hope the medication does the trick and you are pain free soon!
Hi Gemma
Welcome aboard:) sorry you are experiencing such excruciating shocks.
I have taken amitriptyline in the past and it can make you a bit groggy in the morning so my advice would be to take it mid evening, and not wait until bedtime. And give yourself a bit of extra time in the morning. However, some people don’t experience this at all. It’s an old drug that’s been around for a long time, not to worry too much. It can be effective for some types of pain. Best of luck with it. Everyone is different.
Bella
Thanks heather that’s reassuring, u really don’t want to miss my night out.
Bellalarke thanks for the advice, I really can’t afford to be groggy with 4 little ones to see to so I hope it doesn’t affect me in that way. I suppose I’ll just have to see how it goes.
*I really don’t want to miss my night out, not you obviously lol
Hi Gemma
Just wanted to let you know that I have found Amitryptline to be a wonder drug!! Tried most of the others and nothing worked, I started on 10mg like you and felt completely wiped out but after a couple of weeks I felt ok, and pain free!!! I'm at 25mg at night now and don't have any side effects. So hope you have a good experience too and it helps with the pain. I felt the same as you and didn't want to take any meds, but am so grateful for them now!
Good luck, hugs, Maggie
I totally forgot my dad is on amitryptaline. He had a month long migraine a few months ago and the neuro put him on it to prevent it coming back. He isn’t sleepy at all from it. No side effects at all and he hasn’t had one more migraine since. He was only a very occasional migraine sufferer to begin with. I remember when I thought that was the worst pain imaginable sigh
Thanks heather, I must admit I’m not liking them so far, I’ve felt awful today. I’ve got a virus so unsure how much is the amitriptylines fault but either way I feel rubbish.
Aww I’m sorry you aren’t feeling well. Maybe give it until the virus clears up and reasses? I just heard there’s a stomach bug going around here. Guess I can be grateful to be stuck in bed now lol
I think there’s lots of viruses going around at the moment. Having 4 kids doesn’t help lol, they catch everything that’s going. Hope you’re up and about soon xx
I thought dealing with taking care of two dogs was awful when I’m not feeling well and/or having bad TN attacks! I don’t know how you do it with 4 kids!!!
Hello,
Sorry to hear that, must have been quite a worry when it first came on.
Amitriptyline is a good first choice from the doctor and it is reasonably effective in many cases although you may find a higher dose is required. Always good to start small and work up though. A tip is to take it 12 hours before you want to get up - so say you want to get up at 6 am then take it at 6pm the night before. This helps to minimize morning grogginess.
I was put on this first, it did work to an extent but I found the side effects too much at 30mg so was switched to Gabapentin which is probably what the doctor will suggest next for you if Ami is not sufficient. Good luck finding relief.
Welcome to this site. You will find many wonderful and kind people who understand your pain. As you begin this difficult path I would encourage you to get the book Striking Back and do lots of research on how you can help your doctor help you. You are your best advocate. I wish you all the best and many pain free days.
Haha heather, I really don’t have time to be ill, but my husband is very good when he’s not at work.
Thanks unsure that’s a good tip about the 12 hours. I’ll try that today.
Hi patty and thank you for the welcome, everybody is being so kind and friendly already.