Insomnia, Chronic Migraine, and Doctors Who Don’t Understand

puppy with ice pack on his head - migraine?

Migraine pain and symptoms affect 18% of women and 8% of men. According to the [UK] Department of Health (2005) eight million people get migraine making it the most prevalent long term neurological condition. – The Migraine Trust

I am so sick of begging for more medication or help in general with my chronic migraine and insomnia. Doctors don’t listen. They don’t understand. Most of them are middle-aged men with no idea what a migraine or PMS (which triggers migraines) feels like or how debilitating it is. Living in darkness, confined to your bed, in constant pain and unable to do anything but exist is depressing and can lead to suicide – and yes, I’ve thought about it, it’s hard not to.

I’m tired of explaining that my situation is long-term and that I need higher doses because my life is stressful. I don’t have a choice about that, and yet they seem to think I do. I’ve even requested a referral to a migraine clinic or a neurologist and was met with a resounding “no”. If this continues much longer, I’ll consider self-referring though it’s expensive.

My medication works (Amitriptyline and Verapamil) 99% of the time but not at the tiny doses they prescribe. It did at first, but not now. I know the doses I’m taking aren’t dangerous because my mother’s taking 3x more than what I do, and I’ve never suffered any side effects – my blood tests were all clean and my BP and pulse is good.

I don’t understand the problem.

It is estimated that [chronic migraine] affects fewer than 1 percent of the population, but this still means that there over 610,000 chronic migraine sufferers in the UK. – The Migraine Clinic

This makes me believe that GPs are under-educated when it comes to CM and the interlinked insomnia.

Migraine is the least publicly funded neurological condition particularly relative to its economic impact. – The Migraine Clinic

The CM and insomnia began suddenly in May 2011 and for 5 months I went untreated while multiple tests were done, including a brain MRI. In that time, I educated myself to a certain degree.

I have a dysfunctional hypothalamus – the regulation centre of the brain. Neurotransmitters that aid that regulation such as serotonin (affects happiness, appetite, and body temperature) and melatonin (affects sleep) are usually in short supply, and the stress hormone cortisol is usually quite high.

There are other health implications for migraine sufferers as well. I’m more likely to suffer from stroke because during a migraine, the blood vessels in the brain constrict, reducing blood flow. Those that experience aura (distorted vision) are most at risk.

I started taking cod liver oil, magnesium, B vitamins, zinc and motion sickness tablets and taking short bursts of regular exercise.

To some extent, this helped. But when a junior doctor accused me of putting it on so I didn’t have to work, I was shocked. I had to tell this woman I was a carer for my mother and then she went on to test me by asking what health problems my mother had.

Afterwards, I took two steps out of the hospital and cried. In public. I’d never done that, and my protective mama bear went back in and complained. I got to see a consultant, surprisingly someone I knew, as he was my former best friend’s father. I was suicidal and genuinely felt like I was dying from the pain, and if it didn’t kill me, I’d kill myself. It didn’t help that no matter what I did – I tried everything – I slept about 6 hours every 3 days. He provided medication.

For the first few days, there was immense pain, then one day I woke up in heaven. No pain, and I could think. And sleep. Happiest day of my life. No doper was higher than me that day.

I had my life back.

I know what my triggers are: stress, insomnia, too much strenuous exercise (although a little can give relief), dehydration, bad sleeping positions, digital motion sickness, erratic blood sugar levels, eating too much salt, PMS, severe weather storms (which have been battering the UK one after another for the past few weeks), incessant bright light, loud noise and strong smells.

I still want to learn more about migraine so I’ve bought the following:

Migraine books

These appeared to the most informative of those currently available on the subject.

I enjoyed Sacks’s The Man Who Mistook His Wife for a Hat. It helped understand the brain a little better after my mother had a stroke and suffered trans-global amnesia as a result. It must be interesting to be a neurologist, but tough too, not having all the answers to what makes the brain tick.

If these are any good, perhaps I’ll gift them to the doctor at my next appointment.

P.S. I also suffered a rotator cuff injury to my left shoulder a week ago, and together with the migraines and severe and extended PMS, going online was impossible despite several attempts.

10 thoughts on “Insomnia, Chronic Migraine, and Doctors Who Don’t Understand

  1. I’m going to give away my age here, but I got my first migraine when I was in 6th grade, over 35 years ago, I’ve been seeing a neurologist for more than 20 years and I still get them (I’ve been battling one back and forth for the last two days). I didn’t even realize how lucky I was to have been granted immediate access to a neurologist – as soon as my headaches were too much for my regular pediatrician, he sent me off to one.

    I’ve been doing a few things that you have – I know my triggers, I’ve made dietary changes and added certain supplements and I try to get regular exercise. I recently found out I have moderate to severe sleep apnea, something I was completely unaware of. Once I started using my C-Pap machine, it did cut down on some of my regular daily headaches which has cut down on my potential migraines.

    I have a bunch of other things going on health-wise that affect what meds I’m taking, so I don’t know what would apply or help you. I sort of take a mix of things that my neurologist finds useful for migraines. I get the 30-minute warning aura (disrupted vision, tingling extremities, etc.) but none of those shots or pills that supposedly head off a migraine when you feel it coming have ever worked for me. Anyway, a few of the things I’m taking are Gabapentin, Topomax and Indomethacin (I hope I spelled all of those correctly!). My doc hates prescribing opioides but I do have Percoset as a last resort. She gives me grief for it, but when my migraines are triggered by hormones, I’ve found it really works to take 1500 mg of ibuprofen plus 500 mg of acetominophen together. It knocks me out but if I take it, put on my blackout mask and lie down in a cool, quiet room, I usually wake up feeling better.

    Well, this has gotten ridiculously long. You are not alone, not by a long shot. I hope you find the help you need soon.

    Ooh, before I forget – some other common migraine triggers you may want to look for (or at least they’re mine and seem to be common for my family):

    hot dogs/processed meat (this is HUGE for me)
    aged cheese
    alcohol (another huge one – I’ve barely ever had any alcohol)
    food with MSG
    food with wheat


    1. Thanks, Barbara.

      I’m glad I don’t experience aura.

      I’ll look into those drugs.

      I don’t eat processed meat, only the occasional hamburger. I rarely drink alcohol – it doesn’t taste good and I’ve never been able to get drunk or develop a hangover. Cheese doesn’t bother me. MSG isn’t used much in the UK and I don’t eat many processed meals so I don’t know if this is a trigger for me.

      Starchy carbs are all good for me, especially oats. Before meds, I ate obscene amounts of bread. I craved it. Apparently starchy carbs help make neurotransmitters, like serotonin, which give some relief.


    2. Gah, here I was composing this big post and I forgot one of the things I was trying to say about the sleep thing.

      I was having a similar issue as you – I was barely getting a few hours a night, sometimes I wasn’t even sleeping. It’s still not perfect with the C-Pap because I have terrible sleep habits, but when I make an effort to go to bed, I actually sleep well for the 4 or 5 hours and feel rested when I wake up. If you can’t even get a neurologist or decent medication though, I can’t even imagine the struggle you’d have to go through to get to a sleep study/clinic.

      I feel bad that I just take all of the care/referrals/easy prescriptions for granted while you’re suffering so much. 😦


    3. Don’t feel bad. My sleep is regular again with the Amitriptyline, but becuase I take so much to get a normal and restful amount of sleep, the docs have been stopping me from getting more, so if I run out I don’t sleep. This prompts my mother to try and give me some of hers. 😦


  2. It’s is terrible to read about your experiences with doctors. We don’t need them to give us sympathy, but they should always take us seriously. According to Mt. Sinai hospital, 50% of migraines sufferers who go to to a doctor get misdiagnosed, and the danger of under-treatment is that it gets more difficult to treat over time.

    I’m not sure if it will help in your case, but I just summarized some guidelines on herbal treatments from the American Association of Neurology ( Either way good post, and I wish you the best.


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