Finally saw the specialist at the hospital yesterday,he confirmed my headaches as chronic migraines also trigeminal neuralgia.He wants me off the dreaded 200 mg of topiramate (thank goodness) but to start me on 10 mg of amitriptyline gradually building it up over time.
Now i have done my normal and googled amitriptyline and omg the side effects look horrendous,people saying it has turned them into zombies,unable to function etc,i thought the Topiramate were bad enough,does anyone have any experience with this please xxx
I was on 80mg amitriptyline for a number of years, titrating up from 10mg over a period of time. 80mg is the highest dosage for migraine apparently. Unfortunately it didn’t work to reduce my migraine/headaches.
The only side effects for me were a super dry mouth so always thirsty and deep sleep at night (the best nights sleep!) - I took it at around 6 or 7pm each evening as I found if I took it at bedtime I was a zombie the next morning finding it really difficult to wake up. I didn’t have any other side effects that I can remember.
It took me a long time to wean myself off it (about 1 year) as I couldn’t sleep without it.
Topiramate turned me into a mad woman - so depressed with it so didn’t try it for long.
Thanks so much for your reply. I already suffer with a dry mouth due to other meds I'm on so this is going to be fun (not)
I'm not too bothered about the deep sleep at night, quite looking forward to it tbh as i don't sleep well at all, but it's the next day feeling like a zombie I'm worried about, I'm on my own and need to be able to function as I've got a diabetic cat on insulin that needs injections every 12 hours.
I've also read, like you anytriptiline didn't help people with migraines.
But definitely want off the topiramate they are awful.
I guess I'll wait for the specialists letter to go to my GPS and have a chat with her.
Very rarely Amitriptyline works to prevent migraine, but it will make you sleep well which helps for migraine patients. Also it stabilises digestive system, good for people with IBS. So Amitriptyline helps indirectly to prevent migraine. In order to be able to wake up in the morning take it before 7pm as suggested by others. However 10mg will not make you Zombie, when the dose becomes above 25mg you will notice significant differences and you will notice increase of appetite.
Not sure how useful amitriptyline is for migraine, but it is often prescribed for nerve pain such as your trigeminal neuralgia, either that or gabapentin, so maybe that's why he's suggested it rather than an alternative migraine medication. I didn't take it for my neuralgia because you can't take it with erythromycin (antibiotic) and I was always on and off that for various infections, being allergic to most other antibiotics, but I have a friend who's used it - she reported that initially she noticed side effects, and when she increased the dosage, but she's been on it now for some years and functions normally.
Hi,im on Duloxetine for my neuralgia.TBH i wasn't really happy with the specialists verdict especially after waiting months for an appointment,he really didn't seem interested,he also said it was medication overuse of my naproxen as it was down on his screen as 2 x 500mg a day,but i don't take that amount as they dont work and clearly told him that!!Ive also found out from google you cant apparently take Amitriptyline with Duloxetine as it can cause serotonin syndrome,so i feel like the appointment was a waste of time,and am just going to have to wait for his letter to get to my GP and have a serious chat with her.I just want this terrible pain in my head to go away xx
Diagnosis, in my experience, is often where it all falls down - down the years, I've been variously described as having 'menopausal migraine' at 38 years old (it wasn't I saw an osteopath, it was a bone out of place in my neck), trigeminal neuralgia, neuritis, sinusitis and, from the dental hospital, temporal mandibular joint issues rather than trigeminal neuralgia. Seems to me its anybody's guess in the end - I just used to attend the cranial osteopath every six months, which seemed to keep most of the problems at bay. I certainly never found any drugs that killed nerve pain, though co codomol dulls it a bit.
Its certainly crazy isn't it,im also waiting on an ENT appointment for strange smells i keep getting but there's nothing there,my GP said it could be linked to my migraines or something else,so god only knows what they are going to come out with.Im totally sick of it being put on so many different meds all the time.
I tried co codomal but found them harsh on my tummy and i don't want stomach problems too lol xx
Ah yes, smells - I don't think I smell random things that aren't there (though I'm not certain), but I do, some days, have an extraordinarily sensitive sense of smell which drives me mad, I smell everything, from dust to mould to finding the smell of fish frying (which I love) so strong it makes me want to throw up, and i can no longer bear scented candles or air fresheners. I know my sense of smell is very good anyway, despite being a smoker, the gas companies should employ me as a leak detector, I'll detect a tiny amount of gas from yards away... Still I figure its better than having no sense of smell at all!
I also have days when my vision is a bit weird - I assume all this is associated with my 'migraine brain' as they call it... though I have discovered a strong link between dairy (especially cheese) and migraine - now I don't eat dairy, at least I don't get aura migraine any more. Otherwise, frankly, I'm too old to care about all these random weird things😊
PS Re co-codomol - the codeine in it sets the bowels to concrete if you take it regularly, so best taken with a laxative, I find.
lol that reply has cheered me up,i thought i was the only one.
Before these random smells came along my son would sometimes turn up with fish and chips,omg the smell of it would make me want to throw up too.My wax melts i cant use any more,they flipping honk hahaa,petrol stations oh no stay clear.Even fabric softener 😂
And yes i agree with the co codamol also heartburn for me xx
I've been on and off Amitriptyline for years ( off it for two pregnancies ), I've been on 50mg at the lowest and 175mg at the highest. I don't find it has much effect on my migraines but it really helps me sleep, I'm a terrible insomniac and it has helped more than anything else. I take it at 8.00pm so that it is not too hard to get up in the morning but to be honest that aspect of it wears off after a while anyway. I wouldn't be without now.
I used to be on Pregablin and Gabapentin and they made me put on so much weight I hated it, although they were more effective for my pain levels. There is an issue with slowed cognitive function on amitriptyline but I can't say I've really noticed (eek). My memory is appalling but I've always put that down to the chronic migraines and all the brain lesions that I have probably amassed by over the years......
Thanks for your reply.I have the slowed cognitive function with the topiramate and my memory is terrible for a 46 year old,i was hoping that would stop by coming off them and going on the Amitriptyline (uh oh)
I definitely don't like the sound of Pregablin or Gabapentin,i've just lost nearly 2 stone after coming off sertraline.
I'm 42, its sad really, very difficult if you want to learn anything new. My husband is always things like "Don't you remember we talked about it for ages 6 months ago?" I always have to say 6 months may as well be 6 years ago, its all blank for me.
Im exactly the same,i have to write everything down and still forget.I had to get a weekly pill dispenser because i didn't know if i had taken my meds or not.My sister will phone me and we will chat and i'll apparently repeat myself several times.I seem to be in snail pace all the time its horrendous.xxx
Yes I've got a doset box (had to explain to my 74 yr old mother what it was!!) and an alarm but if I don't take my pills within 10 minutes it's 50/50 whether I remember to take my Amitriptyline til I go bed and then can't get sleep, then I remember!
So glad I did university 20 years ago or I wouldn't have graduated.....mind you I had undiagnosed chronic migraines then so I wasn't exactly on the ball!
My mum had vascular dementia god rest her,and there's times im nearly as bad as she was when she 1st got diagnosed,its terrible and losing things is the latest one its just awful xxx
Oh blimey you have a lot to deal with! Do you know I forgot my amitriptyline last night even after writing that message to you about forgetting it, ironic!
I took Zopiclone, I get very few so I can't use them often but I know I wouldn't sleep all night because thats what always happens. I got a migraine today though but then thats what I'd expect!
I found 20mg Amitriptyline worked well for me for many years. Much less side effects than Topiramate. It helped me sleep brilliantly with no problems the next day. Good luck.
Hi Sarah. I was put on Nortriptyline because Amitriptyline was making me too sleepy. The doc said it has the same effect but less side effects. Didn't help for the migraines, though. Good luck!
Yes, I have tried both drugs and both come with a huge range of side effects. Topiramate though considered best for chronic migraine, turned me into a complete zombie, unable to take anything in & suspended my consciousness and so my neurologist took me off the drug. I only got up to a dosage of 50mcg and couldn't think straight even on that. But for me Amitriptyline was even worse. Made my heart beat race to fast for hours and go irregular, body sweats, dry mouth, nausea and dizziness, hair loss. I just couldn't tolerate it even in the tiniest of dosages. There's no point in taking a drug where the side effects are too serious or too many. And it had no effect on the pain or frequency of my migraines. If like me you have sleep problems due to your migraine then antidepressants break sleep up even more and aren't good. I'm on Pregabalin and that's much better for deepening sleep.
Everyone with this condition is different and there's no one drug that will treat all your symptoms.
Take the least amount of meds you can and stick with the ones that help & with which the side effects are tolerable . Introduce new drugs slowly and reduce drugs slowly before starting anything new and that way you will hopefully know what's doing what in terms of side effects and any benefits.
Each new med should be tried for at least 3 months to see if it helps you, as long as the side effects are not too serious.
I'm now on a Cefaly device and prefer it, as there's no serious side effects with this machine as opposed to taking medications.
I'm currently on a mix of Nortriptaline 120mg, Propranalol 120mg (twice a day) and venlafaxine (anti depressant) and the side effects are a bit tough, particularly my fatigue, but my migraines are way better! Down from 20+ days a month to 12-15!
Each person experiences different medications differently - keep persevering with the meds the doctor perscribes and hopefully one of them will be the right one for you.
Hi. I have a couple of experiences with Amitriptylene. The first time I took it a couple of years ago I suffered with dry mouth and mental confusion so was moved onto something else with mo success. Then when I started attending the NMC I was advised to try Amitriptylene again. I wasn't looking forward to it but had a go. This time I've still got a bit of dry mouth but cognitively I feel fine despite being on a higher disr than before. I'd like to say it has helped my migraines but no luck so far but I do live in hope.
Just to say thought going mad , with smells that are not there, nobody else smells them had another aura migraine when out for Sunday lunch, hadn’t had one since August which was great, but then my neck hadn’t flared up since then either? So still feel convinced connected , vision on off blurred to , but was bit concerned with the weird smells , haven’t taken anything but paracetamol ibuprofen as seem to get bearable headache more the aura then just feel heady few days after , painful when having aura shooting up back of head thanks for sharing helps a lot best wishes
Hi there,glad someone else is experiencing these smells,i also thought i was going mad.Ive got one again atm,its like a rotten smell up my nose,i was actually at the drs again on friday to see if she had received the neurologist report yet about the amitriptyline (but she hasn't )and i mentioned it to her and she has given me an antibiotic cream neomycin and chlorhexidine to use twice a day for 10 days so im giving that a go.Last week i kept smelling burning but nothing was (ive had this happen a few times) im still on the waiting list to see an ENT specialist.I also get the horrendous shooting pains up the back of my head,i just really want to get to the bottom of this as its really affecting my life.Take care and best wishes to you too.Sarah xx
Yes same here I thought something burning to , couple days after aura migraine and neck paining again seems to be somehow connected, have you ever had neck checked out as took 9 months to realise i have slipped vertebrae in neck and migraines started about same time, do feel for you so frustrating not knowing with all these symptoms hang in there, and know you’re not alone, it does seem to come and go , i try not to focus on it so much less stressful then , thanks for sharing xx
Topirimate was what made me so ill ended up in hospital for two months ..Amitriptyline is wonderful if your body tolerates it. I also have arthritis so it helps with both . It hasn't stopped the migraines but reduced pain levels considerably so much I can manage with paracetamol and ibuprofen saving sumatryptan for back up . Having said that horrendous weather since Christmas has meant they're still weekly at moment
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