Amitripyline - Side effects - for Occipital Neuralgia. Anyone got any advice?

[ThisisMax]

Hello
A while back I popped up a post about side effects of Amitripyline and got some replies.
Situation is I have had long standing neck pain, originally diagnosed as migraine then neurologist referred me to Pain specialist.

Pain specialist said it was occipital nerve issue - probably occipital neuralgia.
We did a few goes of botox which worked beautifully for a few weeks at a time. These then stopped working so he did a nerve block under general anestethic - these were more invasive, knocked out etc but did work for up to 12 weeks at a time. These have now stopped working. He will do them again he says with higher dose of the block if I want. My other option is an operation but this may have a poor outcome. I spent a few weeks on Naproxen daily which was difficult on stomach then was moved onto Amitripyline - first 10mg and now 20mg. I'm wrecked from this. I take it at 7.30pm - zombified by 10pm, then bed, then wake at 8, zombie for a few hours until I wake up. Sometimes very stoned feeling and uninterested and detached due to the drug. Not great. My GP said to try lower the dose which I did - now on 15mg for past week but pain comes back and side effects are similar.

Dont know what to do now. Thought about a chiropractor? Physio in past was good but could not resolve. The pain is not constant but if I wake with it I have it most of the day. I use paracetamol & ibuprofen to manage. Should I give up Amitripyline (taper off) or look at another drug? Pregabilin, or Gabapentin or go for a second opinion?

Anyone have this and resolve it?

Thanks & sorry for essay.

We all deal with Amitriptyline differently; and tbh I'd be knocked sideways on 15mg.

I can just about manage 5mg every other day (I halve a 10mg tablet). Other people seem to be able tolerate it better.

@SpinMeARiver Thanks. My GP is surprised at my side effects but I am sometimes completely unable to think in the mornings and evenings I'm zombified - sometimes I cannot write as the words are jumbled - very definite side effects. I know at 20mg it elimiates most of the pain but dont think I can get through on this dose forever. 15mg unfortunately does allow more pain through. Tricky to resolve.

Not much help but I take 10mg around 8pm and another just before bed, I don't seem to have any side effects.

you may find the effects settle down after a few weeks, I have to take 20 at night (along with gaba and tram twice a day) and it took me weeks to settle into not feeling zombied (though amy affects me least of the 3)… as someone suggested try speaking to your gp about taking it slightly earlier and spacing the doses slightly so maybe one at 6 and one at 9 and see if it helps…

I take 35mg at night for Trigeminal Neuralgia - I was very like you in the beginning with side effects - I couldn't drive to work for example however after a couple of weeks your body usually adjusts to the dosage. Now the only side effect I get is a dry mouth - worth asking your dentist for a prescription toothpaste with extra flouride to counteract the lack of saliva which increases your chance of tooth decay.

There's also a fb page for TN where people have been on Amitriptyline for a long time so might be also worth asking on there.

I think you need to keep trying. I take 100mg at night, and don’t even feel sleepy at night or in the morning. I do get a dry mouth though

Oh god! I thought I was struggling on amitryptiline and I'm on 40mg!

But yes very very tired all the time. I take mine when I go to bed and struggle to get up.

I found the effects quite severe too at 30mg. I now take 10mg amiltryptiline at 8pm 2 hours before bed and 4mg candersartan in the morning and that’s been effective at pain reduction. Not perfect but I’m functioning enough to get through the working day relatively pain free.

Hi OP

I was dx with tempromandibular jaw dysfunction (better known as TMD) almost 3 years ago. The vast majority of my pain centres around the occipital nerves which makes me wonder whether its actually occipital neuralgia instead (possibly both?)

Botox isn't working so I suspect the next port of call will be a referral to a neurologist. I'm under oral surgery atm.

Anyway, I was eventually prescribed amitriptyline but the side effects weren't bearable for me as I have a small baby. My GP switched me to noritryptiline with no issues. Far less side effects.

Contrary to its sedative effects it actually 'activates' me which means I struggle to sleep well if I take it too late so I switched to taking it in the mornings and have no side effects at all.

It worked a treat for the first week now the pain is back so I have an apt to discuss increasing my dose.

Chronic pain is the pits. You all have my sympathy.

I was a complete zombie on amitriptyline, couldn't function at all. I can't remember the dose but it was low.
I went on to gabapentin after that and stayed on it for 8 years. I had a few side effects (slurred speech, terrible twitching) but it made a significant difference to my pain and I could function on it.

I take amitriptyline for nerve pain and have been on it for ten years. I started on 10mg, which didn't work at all, worked up to 20mg which worked a bit, ended up on 30mg which is great and I'm virtually pain free now. For the first two weeks I could barely function due to sleepiness. I couldn't drive or work. But after about 3 weeks it eased a bit, then improved virtually overnight!

For a few months I took the tablets in the early evening so I was awake the next morning, but now I take them last thing at night and they don't seem to have any side effects at all now.

It might be worth hanging in there a bit longer to see if things improve. It's a great painkiller for nerve pain if you can tolerate it.