migraine and insomnia

[Rosebud66]

I’ve posted on here before, but I do wish the migraine society could do more research into migraine… I have had nonstop migraine now since 2021. I always was a poor sleeper, but now I can’t sleep because the migraines are so bad, and yes, I am on antidepressants. Now I have dry eye. My family now think it is all in the mind after all these years. (Surely by now …?). Then again I have tried four times to end my life, because the insomnia and migraines are just too much and I go down with every virus that comes my way for a week to two weeks, and the migraines just intensify. I know you should let go of the what if’s, and I could if there was any improvement or way out of this mess. But I am stuck . I wishe it was easy to end your life, I have had no idea it would be so difficult.

[cat3]

Hi Rosebud.

I had migraines every week 'til my brain haemorrhage in 2012 ; since then I've had only two, so at least one positive side effect.

But I clearly remember the pain, sickness and exhaustion of full blown migraine attacks, often lasting days.

I hope the link below can help :-

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The Migraine Trust Helpline:

0808 802 0066 (Mon-Fri, 10am-4pm)

0203 9510 150 (to call our office)

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Best wishes, Cat x

[Painting-girl]

This sounds truly awful Rosebud, must be incredibly hard. My post MTBI migraines did respond to physio by a post concussion specialist sports physio, eye and balance exercises, and fatigue management strategies. They only rear up now if I consistently overdo things over a few days. All this when the standard migraine drugs hadn't worked ( and also made me feel variously physically grim to suicidal by the way - so even though what you're going through is awful, you might also want to rule out any side effects from your drugs). I know everyone's different, but how much have you been able to pursue post head injury type rehab rather than migraine treatment? What's been happening to you so far please? ( I see you've tried a lot of treatments.)

Take care

[Rosebud66 in reply to Painting-girl]

There just aren’t any post concussion syndrome specialists in my area… I do travel to a physio but he’s not post concussion… I was referred to a London post concussion specialist but turned down as we live too far away… so acupuncture and physio and sports massage which really knocked me back.. I do wish more was done region wide

[Painting-girl]

Yes, help seems very patchy, it doesn't help matters. I only got help by a bit of a fluke, and I had to go to London for it ( but on my medical insurance). My post concussion migraines were from I think a mixture of sources, one was the nerves in my neck - apparently some don't go through the spinal cord but directly to the brain - so I had a lot of fairly tough physio on my neck. Then I also had oculomotor and vestibular issues - you can do some basic exercises regularly to help with that. (This is all with a clear MRI by the way). Plus I did graded exercise based on John Leddys Buffalo protocol, where you stop if you trigger any post concussion symptoms with the intensity of the exercise, like a tight band round your head - but not on a treadmill ( on a stationary bike) because my head movement on a treadmill would have made the headaches worse because of the oculomotor and vestibular issues. (Plus being thoroughly coached in fatigue management). That and an antidepressant (duloxetine used for pain in fibromyalgia) finally saw off the migraines - I was a bit more headachy when I weaned off them, but overall I'm glad I did come off them after about eighteen months, and felt generally better - and I've carried on improving beyond all recognition from when I had the constant migraine. Is it worth doing some research on oculomotor and vestibular issues and trying out some exercises and talking to your GP - some people on here seem to get this type of help from occupational therapists I've noticed. Wish you well though, hope you find a resolution to this, it must very difficult to deal with - pain affects everything. My second neurologist insisted that post concussion migraine was not chronic in the way that regular migraine is, so I hope you can find a way through this back to health.

[Rosebud66 in reply to Painting-girl]

Thankss for that sound advice. Especially the heartening news about post concussion migraine not being chronic. Yes, I will see if I can get help with fatigue management, continue with the physio and where would I get help with the Buffalo protocol, do you think?

[Painting-girl in reply to Rosebud66]

While it's probably best if you're got a sports physio or occupational therapist specialising in post concussion, because then you get all the exercises to do with oculomotor and vestibular issues, plus the support to keep going with the graded exercise, but you could probably get enough info on the web to have a go on your own. The idea is to exercise for twenty minutes well below a pulse rate level where you expect to get added post concussion symptoms - headache, nausea, dizziness , tight band round head etc. Any increase in symptoms, you stop exercising right away. The idea is that gradually over time you try increasing the pulse rate you work at each week by about 5 bpm, up to your personal max ( which is when it would be better to be supervised). Any week the increase seems too much, you go back to the previous lower level. The first neurologist gave me the best advice to get a second hand piece of gym equipment ( my Crosstrainer/ elliptical was free on social media - my octagenarian mum found and got it for me!)

Theo Farley was my sports physio - he was trying to build an app for TBI sufferers a while back. Otherwise look at some of the content on YouTube for exercises. Clark Elliott the 'Ghost in my Brain' writer posts to YouTube - I haven't watched all his content though.

(Do you get any problems in supermarkets or large shops by the way, because that's an indication that you've got oculomotor and vestibular issues - with motion tracking with your eyes and balance, I couldn't 'scan' stuff on shelves and walking in a supermarket was a nightmare, until I'd done many weeks of exercises)

completeconcussions.com/con...

(I found this description online, which sounds right to me - but I have no knowledge of this company)

Hope you find the help you need, and that you have a listening GP x