Coming off Amitriptyline for Migraine Relief...there is hope!!

[KassieO]

Hi,

I'm a newbie to this site but just thought I'd share my experience so far with Amitriptyline.

I've suffered from migraines since I was about 18 (I'm 53 now) so I've had lots of experience with them. I had meningitis when I was 17 and my GP thinks that there might be a link (some type of scaring to brain tissue) but I'm not sure if this can ever be proved.

I've been from self-medicating, to prescription preventatives and Triptans for relief and eventually ended up on Amitriptyline, with my maximum dose being 50mg each evening.

Initially the Amitriptyline seemed to help but after a few years, I found I was putting up with the side-effects (constant lethargy. excessively dry mouth etc.) for very little benefit. If I took them too early in the evening, I couldn't wait to go to bed and if I took them too late, I couldn't get up in the mornings.

So, I went to see my GP to discuss coming of them. The GP agreed that it was worth trying, but advised me to do it gradually, reducing by 10mg every fortnight. She told me that it if migraines got too bad, I could titrate onto a new treatment at the same time but that it's better to come off one completely before starting another treatment, otherwise it can be difficult to tell which med is doing what.

I dropped my dose from 50mg to 40mg as the first step. Within a few days I had a really bad migraine and needed to take a couple of days off work. I figured that there was no proof that this was caused by the dose reduction, tried to remain positive and continued at 40mg for the 2 weeks as advised.

The next drop to 30mg seemed ok. I did notice some further withdrawal symptoms, in particular, really bad dreams and increased frequency of headaches - not awful ones, just niggly ones that I could cope with.

As it was going relatively well, I dropped to 20mg after a week and I have to say, that was when I started to feel more 'alive' than I'd done for a long while. I felt happier, as if I was in less of a 'zombie' state than when I was taking Amitriptyline. So after just 5 days at 20mg I decided to drop to 10mg. Again, seemed ok. At least, I didn't suffer anything that I couldn't cope with.

A further 5 days later I stopped the Amitriptyline altogether and the only little issues are that I'm still getting some bad dreams (not as bad as earlier in the withdrawal) and niggly headaches.

I've bought a device called a PainGone Pen which really seems to help with the headaches/migraines. It delivers small electric impulses to the site of pain, or can be used on the acupuncture points for headaches/migraine. I believe that it uses the same technology as TENS machines and all the reviews I've read have been largely positive. I'm now using pain killers less and less and am feeling so much better.

I'm sure that migraines & headaches will continue to bother me, but I plan to keep using my magic Pain Pen (aka my zapper), along with Paracetamol & Ibuprofen to try to relieve them. In the long term my aim is to be medication free so that I'm not filling my body with poisons.

I'm feeling hopeful, but am also realistic so will be prepared for the odd hurdle. I just wanted other sufferers to know that there is hope!

I've adjusted my diet to eat more healthily, I try to keep my lifestyle as stress free as possible and I've communicated my intentions to my family and friends so that they can support me when I'm maybe not quite so positive about the whole thing.

So far, so good. Long may it continue. Good luck to anyone coming off this drug!

[fixit]

Thanks for notifying me of your post KassieO. Great to hear you are doing so well. I will have to buy myself a '"zapper" pen. Do you use it at the back of your head or on your skull?

I am down to 10mg Amitriptyline - Taking it slowly. Similar to you I already feel less tired & brighter in the morning. I had two Daith piercings last week as I have heard it can help migraine. Unfortunately, I am on antibiotics as it got infected, but I am feeling hopeful.

[KassieO in reply to fixit]

The zapper can be used at the point of pain or on one or more acupuncture points. I find these better to be honest as it gets a bit tender if I use it directly on my head. The acupuncture points are between thumb and forefinger and front and back of wrist. There are also other points that can be tried if these don't work for you.

Daith piercings are next on my list if the migraines become too troublesome again. Good luck with yours.

[fixit in reply to KassieO]

Thanks Kassie0

[Clazzy78]

Hey, you've done well comingnoff the amitriptyline. I got off 70mg. Like you did it slowly.

I found the last 20mg the hardest, so I split mine 10 in morning, 10 in evening.

I like you felt more alive off it. I could pee better too, I didn't even know I was suffering the urinary side effect.

My migraines are worse off it, as I was on it for depression and sleep but it did help my migraines a lot; especially my menstrual ones.

Well done 💗

[KassieO in reply to Clazzy78]

Thanks for your kind words.

Now that I've been off it for a few weeks I'm actually staring to sleep better again.

I hope things improve for you too.