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Debilitating Migraines

Coogybear

My darling boy who is 17 and has ASD, Dyslexia and co-occurring learning difficulties has been suffering with Migraines for many years now. In the past year and half they have escalated significantly and I’m at a loss to know how to help him. Currently, he’s averaging 3-4 a week and they are completely debilitating. We’ve eliminated trigger foods like cheese, chocolate, juice, marmite etc and yet he’s still getting them as severely and frequently as before. With the migraines he becomes light sensitive and frequently vomits, rendering any medication he’s taken as useless. He has a reliever and anti-sickness drugs, but these seem less effective as time has gone on. He’s tried preventers, but appears very sensitive to them and even the smallest dose puts him into a deep sleep for days. Osteopathy has helped to some degree and I have taken him during an attack complete with bucket and dark glasses, but this not always convenient as he can and does also suffer attacks in the middle of the night. We’ve just recently started tissue salts again and migraine relieving teas, but with no real impact.

We’ve run a food diary and a headache diary, but nothing we try seems to reduce them. He’s under a neurologist, who has ordered an MRI, but it seems to have taken ages to even get to see someone about his detraining condition and he’s been largely advised to ‘suck it up’. Migraine is in the family, but even at my worst I’ve never been as bad as my son.

My lad is getting more distressed with every episode and now sobs uncontrollably when he gets an attack. As the year has gone on, I can see he's becoming more depressed about the situation. He says he feels lonely, scared and constantly exhausted. His college attendance has been affected greatly, and he’s now considering curtailing his education aspirations for HE, because he cannot function on any manageable level. He’s now been advised to take anti-epileptic drugs, which seems somewhat extreme, as he doesn’t have epilepsy and they do have fairly serious side effects. Today, he's in my bedroom with a bucket having had his forth episode this week. The likelyhood is that he will be out of commision for most of the day and possibly even the weekend.

Despite being a suffer myself I’m struggling to know what to do or where to go to get him help. Does anyone out there have a similar experience? Or does anyone know of something I could try to help him further, even if it’s a natural remedy?

Should I be insisting that this MRI be brought forward or am I being and over concerned mum?

Any advice gratefully received. Thanks in advance.

Yours exasperated

Coogybear.

Parents

  • I originally tried to post on your previous discussion, but my post disappeared when I tried to edit it to correct an incorrect link Frown

    Your son's experience with migraines sounds truly terrible.  I doubt that my own approach to migraines will be of much help, but I know it works for some people.  But the main point I wish to make is that there could be a stress or anxiety based feedback loop with migraines that could them even worse or more frequent than they'd otherwise be.

    Firstly, I have an ASD.  Secondly, I'm now in my forties.  Thirdly, I only very, very occasionally have migraines.  They've got more frequent in recent years, from an average of one migraine every few years to as much as a few migraines a year - vastly less frequently than your son!

    The first migraine I remember having started with special effects and partial blindness, back when I was in secondary school.  I didn't mind that optical stuff.  But later that day, I had the terrible headache.  It was so bad, I decided I just couldn't be bothered with such headaches in future, as if I could just 'not bother' to have them.

    The next time I had a migraine, I had the attitude that I couldn't be bothered with the headache part of it.  And I didn't.  I just didn't have the headache, except for a very slight hint of it.  It was as if I really had just not bothered.

    And that's generally how it's been since then.  I just don't bother with the headaches (usually).  It's not so much something I do, as something I don't do.  It really is a matter of having a laid back, can't be bothered attitude.  Taking it as an excuse to have a lazy day might also be helping.

    I've known one other person (who I suspect might also be somewhere on the Autism Spectrum) who independently made the same discovery.

    Of course, it's always possible that we just happen to be two of those people who happen to get migraines without the headaches, and it just seems like our 'can't be bothered' approach works when we just wouldn't get the headaches anyway.  Maybe it's an example of the placebo effect, with the 'can't be bothered' attitude as the placebo.

    Whether or not this kind of approach would work for your son I just don't know.  I only mention it just in case it might help.

    As for anxiety triggering or worsening migraines, I can easily imagine that anxiety about migraines could form a positive feedback loop, making the migraines worse, and perhaps helping to trigger them in anticipation of the migraines then triggered.  Could this be a kind of nocebo effect?  I don't know if cognitive behavioural therapy (CBT) or some kind of meditation might help, but that's what comes to mind when wondering how to break such a feedback loop.  Could listening to suitable music (such as suitably chosen Pink Floyd, Tangerine Dream or Vangelis) help?

    Anyway, I hope you're successful in your efforts to find a way to help your son with his migraines.

Reply

  • I originally tried to post on your previous discussion, but my post disappeared when I tried to edit it to correct an incorrect link Frown

    Your son's experience with migraines sounds truly terrible.  I doubt that my own approach to migraines will be of much help, but I know it works for some people.  But the main point I wish to make is that there could be a stress or anxiety based feedback loop with migraines that could them even worse or more frequent than they'd otherwise be.

    Firstly, I have an ASD.  Secondly, I'm now in my forties.  Thirdly, I only very, very occasionally have migraines.  They've got more frequent in recent years, from an average of one migraine every few years to as much as a few migraines a year - vastly less frequently than your son!

    The first migraine I remember having started with special effects and partial blindness, back when I was in secondary school.  I didn't mind that optical stuff.  But later that day, I had the terrible headache.  It was so bad, I decided I just couldn't be bothered with such headaches in future, as if I could just 'not bother' to have them.

    The next time I had a migraine, I had the attitude that I couldn't be bothered with the headache part of it.  And I didn't.  I just didn't have the headache, except for a very slight hint of it.  It was as if I really had just not bothered.

    And that's generally how it's been since then.  I just don't bother with the headaches (usually).  It's not so much something I do, as something I don't do.  It really is a matter of having a laid back, can't be bothered attitude.  Taking it as an excuse to have a lazy day might also be helping.

    I've known one other person (who I suspect might also be somewhere on the Autism Spectrum) who independently made the same discovery.

    Of course, it's always possible that we just happen to be two of those people who happen to get migraines without the headaches, and it just seems like our 'can't be bothered' approach works when we just wouldn't get the headaches anyway.  Maybe it's an example of the placebo effect, with the 'can't be bothered' attitude as the placebo.

    Whether or not this kind of approach would work for your son I just don't know.  I only mention it just in case it might help.

    As for anxiety triggering or worsening migraines, I can easily imagine that anxiety about migraines could form a positive feedback loop, making the migraines worse, and perhaps helping to trigger them in anticipation of the migraines then triggered.  Could this be a kind of nocebo effect?  I don't know if cognitive behavioural therapy (CBT) or some kind of meditation might help, but that's what comes to mind when wondering how to break such a feedback loop.  Could listening to suitable music (such as suitably chosen Pink Floyd, Tangerine Dream or Vangelis) help?

    Anyway, I hope you're successful in your efforts to find a way to help your son with his migraines.

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