Amitriptyline doesn't seem to be help... - National Migraine...

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Amitriptyline doesn't seem to be helping my headaches anymore !!! PLEASE HELP !!

NatashaBee profile image
12 Replies

I've been taking amitriptyline for about 3/4 months now and the first two months I was on 10mg and it did relieve the headaches, I felt like a new person ! But then they stopped being as effective so they put me up to 25mg and the same is happening again, If anything my headaches are back to how they were before I sought help for them.. I have co-codamol and diclofelx to help when I get a headache but I'd rather just not have a headache, or is that asking too much ??

My doctor thinks I have chronic daily/new daily headache syndrome because before I went to the doctors I'd be getting 2/3 headaches a week. I've been to the eye department at the hospital and they ruled out my eyes being a cause so I don't know what else could be triggering the headaches as much as they are.. :( :( :(

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12 Replies
manofkent profile image
manofkent

Hi...

I tried the same preventative (along with many others) and had no joy long-term. I now take Propranolol 80mg per day and don't feel they help either! I have through April had a migraine almost every other day. 10 thus far...

I put it to my G.P. that I am not keen on taking them when the benefits seem few but he insists that I would be unwise to stop.

I also wish I knew what triggers my headaches. I have had SO many tests and ruled out so many possibilities, there just doesn't seem to be one trigger. I find it a constant juggling act between taking a Zomig (these are what I use) early to ensure it works, and trying to manage without, or at least as long as I can, so as not to induce over-medication headaches. Personally, I feel that perhaps I am NOT having as many as I think? Maybe, I am not actually getting ride of the one headache properly and it's just re-occurring? Not sure if that might apply to you though.

I feel for my doctor because he has tried all he knows over 20 years plus to help but has run out of ideas (he also suffers by the way). I have been seen at The Migraine Clinic..had allergy tests, tried cutting out foods...drinks...making sure I sleep well and regular, ensuring I eat regular, had acupuncture, had scans of head, neck, back etc. tried meditation, cold turkey, heat and cold treatments, stress therapy, head massages, sound-wave treatment, I could go on and on but nothing has worked for me long-term.

I have had mine since I was around 12/13 and am 61 now...think I may be stuck with them forever-I wish you better luck and hope you find relief in some way, it's a terrible thing that NOBODY understands unless they suffer.

John.

NatashaBee profile image
NatashaBee in reply tomanofkent

nooo, NO ONE does unless they're sympathetic I've found hahaaa I get a lot of "just have a drink of water.. you're just dehydrated" hahahaa, no. I'm really not dehydrated :L !! some of my friends are starting to get really "fed up of my headaches"

I've fell into the trap of over-medicating too, until recently when I found out it can actually make them worse as you get a "re-bound headache" when the medication has worn off.. apparently ibuprofen and paracetamol are bad for this.

I can't think of anything other than caffeine that can cause headaches.. any advice on common triggers because I can't think of any. My mums are red wine, smell of petrol, looking at sharp/small points e.g. end of pencils (weird I know), and fairgrounds (the smell of burger vans) she's also more likely to get one when she's menstruating.

Allen59 profile image
Allen59 in reply tomanofkent

Hi John, I've also had the same experiences, I'm a 30 year chronic migraineur and in hospital at the moment trying to sort out rebound headaches as well as different meds for the migraine, amitryptilin has never really worked that well and my dose has gone up to 50 mg so I don't really want to go up anymore. I am also on pregabalin 200mg and imigram for when it gets too bad. I'm gonna look into the physio/acupuncture side of things as I have heard good reports, hopefully on the nhs. I also found lindaphoenix' blog very interesting as I am also about to start takin magnesium and will ask my neurologist about the other vitamins she mentioned, so thank you linda phoenix and yourself John and hope there is a cure for us all soon. It's a comfort to know I'm not alone.

Ladyofshallot profile image
Ladyofshallot

Hi I'm sorry to hear about all the headaches, I first started with them 20 years ago & know how badly they affect your life. Have you tried seeing a chiropractor? The problem might be coming from your neck & if so can be easily sorted. It might not be available on thr NHS where you are but if it solved the problem for you would only take one or two appointments. I had problems for many years before it was suggested to me & it really helped, I hope it helps you. Best Wishes, Ladyofshallot.

NatashaBee profile image
NatashaBee in reply toLadyofshallot

I'm going to mention trying some other methods to the doctor on Friday.. but it's not my normal doctor :( so I don't know what to expect.. my usual wasn't free till next week but I run out of my tablets on Friday :/

I rang an acupuncturists earlier today but it's sooooo expensive, should I just mention I want to try it to my doctor and hope they offer it me.. :L

LindaPhoenix profile image
LindaPhoenix

I was exactly the same - in fact your story could have been written by me! I was on 10mg Amitriptyline & it worked for a couple of months, then the migraines came back, so it was upped to 20mg, the same thing happened, then it was upped to 30mg, etc etc until I got up to 50mg. At this point I got quite bad heart arrhythmia and had an ambulance called to me one night! For the 8-9 months I was on Amitriptyline, it would only work for a few weeks at a time. I had to gradually come off it earlier this year. I've since been on a high dose of Magnesium 600mg, Co-Enzyme Q10 300mg and Vitamin B2 400mg a day. Again this worked for three months, but my migraines have started coming back again! I'm now trying a Chiropractor - had my first initial consultation yesterday. He said my neck is in quite bad shape, so I'm starting a series of appointments next week. I'm sure some of my migraines are hormonal. I tried Soya Isoflavones (natural oestrogen type supplement) 2 years ago and had no migraines for three months, but again they started coming back. I'm now going back on it again to see if I get the "honeymoon" period again for a few months. I'm also trying sleeping elevated in bed (3 pillows arranged in a triangle with a neck pillow for extra head support - not attractive!). I get quite despondent at how much I'm trying to control the migraines, but things only work for a short period of time. I also have a low dairy and wheat diet and have cut out Aspartame and MSG. I'm still not as bad as I was a couple of years ago as I would get severe vomiting migraines and I have only had one of those in the last 2 months (they were once a week) but I just want to have a clear head! I hope one or more of my suggestions may give you an idea of something else to try. x

NatashaBee profile image
NatashaBee in reply toLindaPhoenix

what are you having done at your Chiropractor.. I enquired today about acupuncture, only thing is its SO expensive.. can the NHS do this ?? Hopefully they can sort your neck out and you feel like a new person !! And does MSG cause headaches :S I don't even know what it is if I'm honest hahaa..

I'd be interested to know how you're appointments go with the appointments, I have my fingers crossed for youu ! :)

I vomit if my migraine is really bad but not normally thankfully.. throwing up always makes the pain worse !!

I hope you find it as comforting as I do to find how many people are suffering in silence about this very debilitating problem! in my case it seems to be old age inability to cope with stress, which is better than dementia or a brain tumour which is what i think i feared! Trouble is that when you have a condition which is not either life threatening or easily curable you are in a very difficult place in the nhs. Have you been watching the programme Keeping Britain Alive on BBC 2 about the nhs? gets things a bit into perspective. lots of good advice on this site everyone!

NatashaBee profile image
NatashaBee in reply to

you're right it is a comfort (as selfish as that sounds) to know other people have it to hahaa.. and no I've not seen it, will it be on BBC iplayer ?

Oh goshh, well I'm only 19.. hope it doesn't get worse ! :L

LindaPhoenix profile image
LindaPhoenix

I had an hour with the chiropractor today (£65 !!). He manipulated my neck & jaw, there were several tender spots that he found, I'm going back next week for another shorter appointment & he's given me massage to do at home on my jaw & temples. He also put 3 acupuncture needles in, but I've been having a course of acupuncture with a physiotherapist on the NHS (I used to work with them, so I knew they did it). If you want to try acupuncture, go to your GP and ask to be referred to an NHS acupuncturist - there should be one in your locality, normally in health centres in towns, rather than hospitals in cities. MSG is monosodium glutamate - google it! It's an artificial flavouring, basically a high salt taste, very common in chinese cooking, known to cause headaches & migraines. Best avoided. There's a really good group on facebook called Chronic Migraine Awareness, most of the posters are in the USA, but it's a very good group with about 900 users, some with the most chronic migraines imaginable & on a cocktail of drugs. I've found it very supportive and useful with suggestions of things to try, supplements etc.

richardjobe profile image
richardjobe

I have been suffering from chronic migraines for 18 yrs. Smells, sounds, foods trigger them and sometimes last for 2 weeks. My Dr started me on 25mg of Amitriptyline which I bought here internationaldrugmart.com/a... . Instant relief. First 2 weeks it would knock me out & when I woke I would be drowsy and float through work. Not even a headache for 28 days! 29th day, migraines were back, not as bad. Dr. upped my dosage to 50mg. So far so good. Side effects I have experienced: Dizziness, drowsiness, & dry mouth.

Livibird65 profile image
Livibird65

Almotryptan worked for me for a few years. I understand from the GP that painkilling properties are at low levels. I had 10mg tablets and could take 2 per day. Then it wasn't so effective and, when I got headaches, I was taking 5 or 6 per day. Then the headaches got more frequent and finally they returned to the old 3 days of vomiting. Then the GP said stop taking them and try 900 mg of dispersible aspirin.

Don't over dose and follow instructions on box. I was skeptical but it does offer some relief. See your GP again.

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