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New here, would love advice?

10 Replies

Hello all,

Been reading through some posts and already found some great advice, I'm just wondering where to start! I've had episodic migraine with aura for 13 years, and I usually get an average of 1-2 a month with clusters of 5 or so every spring or autumn, however the last month and a half I've had 9, often knocked out for days between attacks and have had several without aura.

Things I've tried: Propanolol, magnesium 400-600mg for 6 months, avoiding hard cheese, red wine, chocolate, citrus, caffeine and alcohol, (I still avoid all but chocolate after cutting it out for a year), chiropractor.

Things I've started trying since the cluster: Dolovent, (study approved amounts of magnesium, Riboflavin, Cq10), feverfew, just started hypnotherapy and for 2 days been wearing Axon glasses to filter out certain lights. Keeping a food diary.

Since my attacks are usually sporadic I've always struggled with finding a pattern. I understand now I've not been 'taught' correctly and that it's probably more a combination of things.

I had to be written off work due to this cluster and I'm dreading going back. I know so many people have it worse but this frequency is new and scary for me, all I can guess is my threshold has gotten lower for some reason. I know the things I've mentioned can take time to work and I'd rather go the natural route but just had 2 in 2 days and wondering whether to ask my GP for amitryptaline as I've heard that works faster as a preventative than natural supplements like Dolovent. For onset I take Naproxen, Metoclopramide, and Sumpatriptan nasal spray.

Thanks for any advice, it's just so hard to know where to start and while my logical brain says try one thing at a time so you know what's working my hurt migraine brain says screw it try everything!

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10 Replies
fixit profile image
fixit

Amitriptyline worked for me and as a bonus it helped me sleep.

in reply to fixit

Hi fixit - how long did it take to help for you?

fixit profile image
fixit in reply to

Pretty much straight away.

in reply to fixit

That's encouraging! Thank you

KatherineM_PBC profile image
KatherineM_PBC

Hi willowsarah. Similarly I had episodes of distinct migraine, aura then 2-3 day headache, with several days inbetween attacks......but my headaches morphed into daily head pain with flares of more intense head ache which needed strong painkillers (I no longer get the aura!)

I spoke to Rebecca the Specialist Nurse @ Surrey Headache Clinic and she recommended Dolovent, I've been taking it for 2 months now and will continue short term, I believe it has helped. She told me that taking 75mg soluble Aspirin a day would help with the aura, and I no longer get an aura preceding the headache, so that might be the reason?!

I have been seeing an Osteopath and he agreed with the Neurologist that Amitryptaline would be the drug of choice as it is helpful for chronic pain/muscular skeletal problems. I started on a low dose of 10mg increasing to 20mg after a week, week 3, I was pain free for 10 days, that's a record for me. I did just have a stinker of a headache last weekend (lasted Thurs-Sat) but as it was without the aura I don't know whether to call it 'migraine' anymore? Personally I would not start on any long term meds (like Ami) unless you are under the care of a specialist. There are minor side effects (only things like dry mouth etc) so they suggest you start with a small dose, then increase weekly. I have read posts on this forum from people who were not given any advice and started on 50mg for example and couldn't function cos they felt too sleepy etc, I have not had this at all.

Like you I avoid alcohol (much to my disgust as I love a glass of Champers) and can't really see a link with cheese/chocolate etc, I get a headache whether I eat them or not. It is my understanding that chronic head pain is not caused by diet, but I may get shot down by other members?

The logical path as you say is to try 1 thing at a time, I would relate that to meds only. If you do get prescribed the Ami though, keep taking the Dolovent, it's a supplement so won't hurt if you take both (and I honestly don't think the Dolovent will help just on its own). I'm upping my Ami this week to 30mg, I have read I might need to get to 50mg before I get good relief. I'm also considering Acupuncture, I'll try it all to find a solution😂

Good luck to you and let us all know what works for you? 😘

in reply to KatherineM_PBC

Thank you Katherine, that's really helpful. I'm the same as you that when I don't have an aura I'm at a bit of a loss as to what to call it! As much as I don't like the aura it is at least good as a warning. I agree I'm really struggling to see a pattern with food; from what I can tell it's highly individual anyway so while one person might benefit from cutting something out another might not.

Glad to hear the ami seems to be helping for you, I've managed to get a doctors appt and if I see no change before then (in 9 days time) I'll ask about it. I believe can help with depression too and I am feeling really low with this latest bout. Thank you again

blinc profile image
blinc

Hi, totally sympathise:- I seem to have more migraine/headache days than clear at the moment. Agree we are all so different & drugs react differently for each. Good luck with the Amitripylene. Didn't suit me; made me v sluggish all the time & didn't help head either! Propanolol not helping either (though i know some swear by it)... so important to try!

With head out of control at the mo (at 49, i think my hormones are going haywire), Im talking to dr tomorrow about HRT gel; i've been told this can be v effective by a wonderful female GP fiend of same age. This is something i said Id never take, but like you, I'm up for anything right now!

I will definitely give feedback to you all.

I hope the Amitryptyline helps!

Good luck😀

babs1234 profile image
babs1234

Amitriptalyne 25mg helped me for 9 months but the the headaches started to come through plus I was like a zombie so came off that drug. Tried acupuncture ( think it helped initially) tried chiropractic that helped in the freeing of my neck (which always seemed bad when I had the headaches) but not really much help for head pain. Had the daith piercing which I did notice quite an improvement with the severity of pain but not much help with frequency. Now on the Gammacore device trial, that is helping with the frequency and severity

in reply to babs1234

Thanks babs - did you up your dosage at all or just come off? I am wary of anything that makes you tired as I'm usually worn down anyway but just desperate for some relief - I have the daith piercing too!

babs1234 profile image
babs1234

Hi. I gradually weaned off as I was so zombified I didn’t want to up my dosage. I was like someone with dementia 😩 having said that everyone is different and it might suit you. I must admit it was nice to be pain free for 9 months though

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