Another despondent Brit!

I've just gone back on Amitriptyline, having tried and failed with beta-blockers and anti-convulsants.

I'm trying desperately to break the cycle of taking daily triptans which is frightening me. Better the devil you know - I thought. It was never a huge help before but things have definitely got a lot worse since I came off it in the autumn. My quality of life is just about non-existent at the moment (as with a lot of other people ).

However whereas before it made me sleep so well, I've been waking in the night in a panic and with a horrible headache. It's early days so I'm hoping things improve but I seem to remember reading on here not so long ago, that someone else had a similar reaction when starting Amitriptyline? If they did, did things settle down after a while please?

Thanks

Liz

as a person who is also stuck with daily triptans, i certainly don't want to post a downer response. but i'm 70, this regimen hasn't killed me, nor caused me ANY side effects. zero, zip

i know there are others here who've tried just about all the preventives (moi) with no success, and terrible side effects. i've determined to not ever try any so-called preventives again; it's just so much guesswork. "here, ms. cook, i'll throw this drug at you; see what it does to you". no thanks.

until there is serious research into this disorder we have, i'm stickin' with what works. i'm sorry the ami failed to help you sleep. imho, this is a huge factor in whether or not a person gets the killer pain. if i sleep, i have only background pain. it's the sleeping which is another huge mystery. why can't i do the most normal human thing anymore?

several surgeries later, i'm giving up on cures, and going with the few drugs i can take and which help me have a semi-normal life and to work 30+ hours/week.

be sure to check if you are getting the same BRAND (GENERIC BRAND) of ami as before. those fillers can be very problematic, and every company uses different ingredients. dianne

Hi Dianne

Thanks for replying - I know you take them almost daily and reiterating it has reassured me a bit. I think too you alternate between triptans which is something I might try.

One of the big problems at the moment is more often than not, I'm waking with a migrane, so as it's already got a grab. When I take the triptan, it then gets worse for a couple of hours, before improving but leaving me with horrible dregs. so that means the majority of the time I'm not functioning for a large part of the day. The ones that come on in the day are easier to deal with. I just want to get a bit of life back if I can.

Hope it's a better day for you today

Liz

Liz,
I took Amitriptyline about 20 years ago when I began to suffer from migraines.
They misdiagnosed my migraine as a second syptom of depression.
It helped quite a lot with migraines. It gave me weird side effects for the first weeks. I used to feel my brain foggy and had some sleeping issues. Side effects lasted only 2/3 weeks anyway and then I got only benefits.

Hi Liz,

Are you taking daily triptans? How many are you taking? Do you get any break at all?
Someone must be letting you have them, are they stressing you, or are you stressing yourself?
I ask because I think you know, I agonised over them. BUT less so now.
Last month I decided to just go for it and take them whenever....less stress.
Took 1 extra last month. I imagined it was going to be double.

Seems to me there is a lot going on with these drug scares.
Triptans have been around 20+ years and I am not aware of any deaths or dreadful occurrences.
I am sue someone will put me straight if that's wrong.

They are my life saver. I have a love hate thing with them.
Today I was glad to take the damn thing. And I am glad I did.
I always wake up with pain, so then I go through about 2 hours of debating and stressing is it Triptan, OTC or nothing.
Today after 6 days without, but 4 days on 2 Anadin a day (after 6 days off them). I just took it.
The pain was bad, and I felt odd. Well that was 9.15. Its now 12.15 and it is better enough for me to typo my way through this. I also have belly ache because I couldn't face eating, or even drinking some milk. I give then 5 hours to finish "working".
I will almost certainly feel better by bedtime....great....
I have no idea what tomorrow will bring, another triptan? If not it will be sunday because mine can do that.

I am like Dianne, I am sworn off the preventatives (unless they make one for migraine).. I know Linda feels the same.
I am sick of being a lab rat. Yes I had Amitriptyline. It turned me into a zombie, as did the supposedly milder nortriptyline.
This went on for 8 weeks with no lessening of the side effects. At that point my GP took me off them. Oh and they gave me headaches, which I don't actually get....oversleeping maybe....until 2pm. I did not have what you describe, but I was probably so zapped out, I wouldn't have known. That sounds horrible BTW Liz.

I wont be trying them, nor any of the others again. Had 3 goes on beta blockers and each time the side effects increased (this may be due to my fibro), and not a jot of difference in the migraines. The neuro has quite gone off me because I wont take any more of his drugs....so he reluctantly suggested B vitamins and Butterbur....
Well if they work, why would I want all these horrible drugs? Why didn't he start me on them???

There seems to be some difference on some of our American friends comments here, regarding warnings of MOH etc.
Someone said just the other day their neuro said, go for it. The important thing seems to be to get out of pain and have some life quality and NOT stress....Easy to say of course.

Liz. I have little life quality either. I spend most of my life on this bloody uncomfortable couch watching, well at the moment Loose women. Oh, there is Peter Andre, I knew him as a child...This is my life, it is painful, and boring and depressing.
So in order to catch the odd glimmer of light I take the damn triptans. Am I happy with that? No way.
Do I think I have MOH. Actually no, and I think it is overblown and causes a lot of unnecessary stress.
Does it exist, yes I think it does, but it effects maybe 2 in 100 of us. As the poster whose name I have shamefully forgotten temporarily said her neuro said. Whether its rebound or migraine, its still migraine, take the Triptan.

Is it possible Di, that you are stressing so much that it is driving the migraines. I know I was and it took Lee from MA to point it out to me.

As we are both in England if you ever want to chat, I am happy to give you my phone number.
Meanwhile, I do hope the side effects back off, and the anti dpressants work.
Take care.


apologies for any triptan driven typos, cant be bothered to go back over, taken me an hour to type.
SORRY, and addendum. Just saw you said ~"tried and failed". YOU did not fail Liz, the drugs failed you.
Perhaps if they gave you a drug for migraine instead of a million other conditions you dont have they wouldn't fail you.
That is why all we really have is Triptans. At least for you and I they work a bit.

Thanks for that Ivy, I'm hoping things will settle down a bit soon.

Thanks Pen too. Yes I am taking them every day at the moment, I think there was just one day last week when I didn't. I now get given 18 each prescription which lasts about 3 weeks. My GP doesn't like it but knows I need something at the moment. I know we haven't heard much about dire effects of triptans but the fact they constrict your blood vessels, I feel it can't be good to do that to my body each day. There have been a lot of strokes in our family which adds to my worry. However I just can't do without them at the moment. I'm definitely not suicidal but am so very tired of having to cope with life and migraines. Is that defeatest - probably yes, self-indulgent - maybe, I don't know. I don't have a very clear perspective at the moment. I'm glad you're not agonising over taking them now though Pen. I know you say you don't get stressed but the worrying over taking them can't have helped. Let's hope things may improve soon, you never know

Liz

Liz, I do still get stressed about taking them. I just dont agonise over the actual taking as much.
When I get a bad spell as I had two weeks ago, I hate taking them maybe 3 days in a row.
I have kept a journal and csn now see that I get bad runs, and no idea why, but I will (hopefully) get a better break.
So I decided to not agonise over the bad run for one month, and then that ran into two.

Dont get me wrong, I am NOT happy living on Triptans, nor with how many I take.
Especially when I have MA pounding me with warnings of not more than 9 a month....
But is there evidence of them causing strokes?
As I understand it, and I think it is Linda who posted about this, having had a stroke.
The migraines are the stroke danger rather than the Triptans...
I think she said her advice was to stop the migraines.

I wish there was something else I could say Liz. Are you on my FB page, we do get some good advice and articles there, and there are people taking as many and more Triptans, and very strong drugs.
I dont think you are being at all defeatist.
I just think you are down and struggling and there does seem so little hope.
We all need hope.

Take care Liz,
Pen

Isn't Triptan what Turkey has in it? I think I will just start eating a nice Turkey sandwich with mayo, lettuce and tomato or two followed by a cold coke.

Hal

Just googled this Liz.......

Give it a read, wont solve anything, but might help a little


http://www.neurology.org/cgi/content/abstract/62/4/563

Hal wrote:Isn't Triptan what Turkey has in it? I think I will just start eating a nice Turkey sandwich with mayo, lettuce and tomato or two followed by a cold coke.
Hal

Like going cold turkey!!!

Thanks for the link Pen, that was interesting.

Hal good idea!

Welcome Liz,
Wasnt totally heartening I know, but bit less scary at least in part.
What do MA say about the stroke connection and Triptans?

P

Found another one Liz.....quite a few out there.

http://www.amjmed.com/article/S0002-9343(01)01064-6/abstract

the triptans do have contraindications for stroke and high hp. are you under a neurologist? they do say you have to have 2 clear days i nbetween taking the triptans before taking any more. my neurologist is also a consultant pharmocologist and teaches very clearly about them. the one thing they say is if they just take the edge of the mig and the come back theyre not working. ask your gp to get you to a nerologist who understands migraine. if is a minefield trying to get our meds sorted for igraine but unless youre on one that is clearing your migraine and giving you a clear head in between migaines theyre not working. DONT MAKE DO WITH HAVING THE EDGE TAKEN OFF YOUR MIGRAINE, keep going and find that drug that will clear the migraine for you. you dont deserve to just live with headaches everyday!! ive been there ive had the daily meds and the liver test that at the age of 35 was that of a 70 year old from the meds! aim for that quality of life you deserve with the best support from a neuro you can, there are some excellent one in london, nr you. keep going .good luck.

Gulp! The liver of a 70 year old! That is seriously worrying. At the beginning of my migraine career I was always concerned about the side effects of meds on my kidneys and liver, but over time I blew caution to the wind and took whatever got me through the day .... mostly triptans and a cocktail of preventatives. I am only 40kg and the effect of all this poison on my slight body frightens me now. Gotta run immediately and buy some milkthistle to help out my poor liver ....

P.

I am ONLY on Triptans, no other drugs, sworn off them.
I got my liver checked about 6 months ago, function is fine.
I think it is the pancreas that struggles with some of the meds.
Sure the liver processes, but dont forget it is self repairing.

Do we need to keep scaring ourselves.
Remember, we are only trying to get out of pain, and have some life quality.
I wonder if sufferers of other illnesses get as beaten up as we do?
My friend has PD, she doesnt....

petzi, you can see surgery is so enticing, the liver can only repair iself if it ist havign all the drugs and ive nursed many whose liver didnt. but the main thing is just finding that mig drug that works and not overusing it but using it how it works. its an ongoing struggle, yes i think lots of people are struggling with meds in many different ways. we are forever in the learning curve.

Thanks for the further link Pen.

Dawn, the triptans do generally get rid of the migraine entirely in the end, not just take the edge off but I do understand what you are saying. I too worry about my liver as does my GP. I've got an appt with another neurologist in August and this time he is a headache specialist thankfully. Not that I hold out high hopes, but I'm told he isn't simply a tablet pusher.

Milkthistle Petzi, have to consider that . . . .

Liz

hi liz, am very pleased youre seeing a headache specialist , you need their support and guidance, and thankfully you havent long to wait. hope you havent got far to travel( another mig trigger) ive never had to visit it but there is also the city of london migraine clinic which is very good. hope your appt goes well. good luck.x

hi lizzi, let us all know how you get along with the neuro, as its hard to find ones that we can get along with and feel we can work with what theyre prescribing and also those who are close to where we live so dont get a mig by the time weve arrived at the clinic. think you said youre in london, im 1 hr on train from london in essex. good luck

Dawn, I've been to the City of London Migraine Clinic a couple of times. They made suggestions to try, which I did, but it didn't help unfortunately. Now they've doubled the 'voluntary' fee, it makes it more difficult. The neurologist I'm going to see is only 20 minutes away - I'm down in Sussex.

Thanks
Liz

Liz,

And what happens if you do not pay the "voluntary" fee?

Hal

You probably get beheaded . . . . . which would solve all the problems!!!

Liz

Yes, apparently milk thistle taken at the same time as your medication reduces the impact of the drugs on the liver by half. I think the article was in the Daily Mail recently, but I could be wrong. I made a mental note to go out and get some for the sake of my liver. With all the surgery hooha I put it on the back burner.

I have been to the City of London Migraine Clinic a couple of years ago. Their registrar Anne Mc Gregor is okay (i don't know if she is still there), but they also had a French doc working there and we clashed immediately. She accused me of having a bad attitude when I didn't want to undergo cognitive behavior therapy. CBT for migraine? Anyways nothing they suggested there had any impact at all so gave up going there. Wast of "volutary contribution".

P.

Hi Petzi,

I went to CLMC years ago. I saw Ann McGregor, she was about the only one there then.
I had two appointments, and then had migraines for the next two and couldnt go.
They dumped me. They do that. I asked to be given phone consultations as we had gone through all the necessary.
Nope...have to be here. It wasnt the money, I was still going to pay...its their protocol.
Tried numerous times since. Last month in fact. big fat NO!

Now they are charging a lot. And I heard that they expect you to pay if you cancel.
I cant do that. I haven't been able to work since 1992 and my husband is redundant.
So I couldn't risk the appointment, and in any case the chances of me getting there are about zilch.
I just cant travel to order. She is still there BTW.

I was offered CBT on NHS. I took it because I have a lot of anxiety.
I went 8 times. It was all assessment. When I missed two (not subsequent) appointments, they dumped me too.
Referred me to pain clinic. That was in November. I am still waiting for an appointment.

Pen