Hi , id like advice from anyone further down the line than me. I took preventive beta blockers and amitriptyline for ten years. Had a chronic migraine now for 1 year. Ajovy and botox not helped at all. Currently cut out sugar and alcohol and about to start 30 day strict healthy keto diet. Reading on here I think also dairy cut out will be next but lots of grass fed butter on keto diet.Take no drugs at all as nothing touches. I know lots people worse than me , i can function, just. Can read swim and walk which is good. Retiring from work earlier than would have liked but no concentration whatsoever.This pain has never left once even for an hour. Tried cefaly machine for 3 months. Torture but does get more bearable. Cannot tolerate electric lights television /radios.small children .cannit babysit grandchildren any more at all but can visit them. Im female 59. Any advice grateful for
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Francesca21
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Have you tried the correct dose of magnesium? I use magnesium glycinate (there are about 4-5 different types) I take it 3x a day at a high dose, 400mg. I also have found Feverfew helps a lot, which I take 2x a day. In addition I have Imitirx pills( higher than normal dose 100mg) and 6mg in injection form.
I know this seems like a lot but I now have few episodes than ever.
When needed I put ice on the area in my head that hurts.
One last thing, I keep peppermint roll on oil to smell when something doesn't small right or I feel it come on.
Please listen the the "Heads Up" Podcast, they are 2 UK migraine specialist that have changed my life.
Please also do a sleep study to make sure you are getting enough sleep.
Have you looked at the Stanton migraine protocol? If you want to go down the diet route it's worth a look. It's a carnivore diet high fat, high protein low carb diet. I'm just starting out on it and so far so good. You sound like you are in so much pain but trying to be upbeat. I wish you all the best.
Apart from what has been suggested already - you may want to check with dentists (Orthodontics) to see if there is bite misalignment or not. Malocclusion (teeth don’t line up properly) can cause constant headaches and some people have reported their migraine / headaches have drastically improved after treating bite misalignment. Although kids benefit more, there are also treatments for adults including elderly.
Also, if keto diet does not help you may try going vegan for 3 months to see if there is any improvement (but don't forget to take high doeses of Vit B12, B6 supplements).
Thanks i will follow that up as know i have less teeth than other people ! I was born with no fangs either side of top front teeth.Am so grateful for all these avenues to explore.
Hi Francesca. I'm very sorry to hear that you're having a constant migraine. After reading through everything you have tried, the first thing that came into my mind is that your diagnosis of migraines might be wrong. Have you tried consulting other specialists? The issue with headache specialists, be private or not, they will keep on telling you that all your symptoms are because of your migraines and they will not look at any other possibility. You're not saying if the amitriptyline and Beta blockers were working and did you take them because of migraines?
When it comes to Cephaly, I was the same as you: real torture. I stopped after the second time as it just didn't feel right to me. It sounds that you've been doing it for 3 months and if it still doesn't work, well, I'm not sure it will ever. You're saying you're 59 and a female, did you get your hormones checked, including thyroid?
I wish you all the best and don't feel pushed into trying things that don't seem right for you. Make sure that you challenge your doctors as it sounds they have put you in the 'too hard basket'.
Hormones checked is next avenue to go down. I had episodic migraine at 20/21- and headachey type person throu 20s-30s-40s- at 48 menopausal, i had horrific acute migraines that wipe u off feet for 24 hours darkend room and vomiting. Have never had an aura . I was then put on prophylactic meds of beta blockers and amitriptyline- these worked very well for 10 years. Then i began having breakthrou headaches and became guilty of over the counter medication abuse. And had to endure cold turkey. Because of covid all referrals were denied. So ive been paying a private nhs neurologist. I now have nhs appts with him and his specialist nurse. But ajovy cgrp inhibitors not avail on nhs. Botox is avail on nhs but not until ive bn on list for a year. Thanks for advice much appreciated
Hi Francesca, Did an injury cause the migraines? Do you have auras? Have you seen a neurologist? I've had migraines for 40 years, and many people in my family have migraines. I've been lucky. The triptans work fairly well and so does Botox, mostly the injections at the back of the head. And I use a heating pad on my head when the pain is intense. I hope that you find something to help relieve the pain.
Do you think there is a stress factor here? I sometimes think that if I didn't have a migraine, I wouldn't be so stressed, as I have so much to do. Counselling helped me. Relaxation techniques might help, but they don't solve underlying problems, unfortunately.
Yes defs think stress factors! Ive had a very stressful life. I dont have stress now other than ive had a severe headache that wont go away. Ive wondered if its learned behaviour by my brain.i sleep well, I exercise a lot , swimming daily when pools are open. Im well hydrated and good diet. Electric light and noise- television/barking dogs/ small children etc send my score rocketing. I score it in headache diary 3 times a day. I can function if score under 8. I feel lucky that i can function. But the tingling face /trigeminal nerve and nausea tell me its chronic migraines. I darent not follow the pathway im on with a top nhs neurologist. But agree it could be a headache disorder. Tried all the triptans and max dose nortriptyline.Consultant was sure ajovy or botox would help but not up to now. Thanks for reading xxo
Hi Francesca21, so sorry to hear about what you have to endure.I have 2 ideas. 1. your interesting thought about learned behaviour: my system creates an autonomic (I suppose) response to one specific stress that results in a fairly instant migraine. I mean, like a few seconds. Then the damn thing takes a couple, to many days to resolve. Comes in different levels of pain, depending on the strength and duration of the stressor. Can’t easily avoid the stressor, as I live with it. I’m interested to know if with training this can somehow be unlearned and the link broken. When I have time I wish to explore this further - maybe I need to post on it to see who else has had this experience?2. I’m taking Candesartan prophylactically, which has helped me to some degree.
Hello, I am French 60 and suffer from migraines since age of 26. Valproate can help you , I can’t use because bipolar troubles. Since two month the specialist give me ajovy , for majority of people it’s working very well
I'm confused as to whether you've had botox and CGRP inhibitors or not. They're both available on the NHS now. The only new drugs not yet available are the gepants and lasmiditan (but hopefully they will be soon).
I had ajovy / fremenuzab in October November December. Had to pay. Neurologist said not avail nhs. Didnt work.at all.December jan feb i used Cefaly. Also didnt work. Got 80% refund. Had botox in February, had to pay - 1 yr waiting list nhs. Due second go at that 30 april. Also didnt help. Not sure where rhe neuro will go after this if it dosnt work. . Been on nhs waiting list for botox since December. He disagrees its incurable. Trying keto diet atm. And magnesium. Just ordered belladonna. Thanks though 👍
I don't think CGRP inhibitors were all approved until last November, so you were a bit unlucky there. St. George's Hospital Headache Clinic are currently able to prescribe them.
As for whether or not it's"incurable" well it's genetic, so unless gene therapy becomes available for it, it can't really be cured. The brain can be de-sensitised though ( e.g. by way of preventive drugs) - at least in most migraineurs. It's just complicated by the fact that everyone responds differently.
Is it genetic? I didnt know that? My mother certainly has never had them. But my 28 yr old son is very definitely headache prone and had loads between age 10-14. Im inclined to think hormonal. He gets bad headaches now but probably self inflicted. He will learn. Haha
Yes, it's certainly genetic. My mother had bad migraines for several years, but they vanished when she got older. I think they talk about the genetics on the Heads Up podcast (which is a must-listen for every migraineur).
I've read that there is a new treatment for migraine it's a drug called Fremanezumeb. If your GP is reluctant to prescribe it ask for Rimegepant to try first.
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