Migraines & Headaches

I’ve always been “headachy”.  I remember visiting the doctor when I was in my early teens, about 13 or 14, as I’d started to get daily tension headaches which came on at around 2pm every afternoon.  In the 70s and 80s kids weren’t treated like they are now and I was made to feel like I was attention-seeking or didn’t like school and was trying to get out of afternoon lessons, neither of which was the case.  So I just took paracetomol and got on with it.  Hindsight’s a wonderful thing and I now know my mast cell issues ramped up at puberty, so looking back I’m assuming the headaches were hormone/mast cell related.  The daily headaches settled down after a year or so and I didn’t give them any more thought, though I went on to be a “headachy” adult.

After I developed M.E. in my twenties headaches and head pain in general were a daily occurrence, to the point where I was living on paracetomol.  I didn’t have my first migraine, though, until I was in my early thirties.  Mine started with Classic migraines, which involved auras.  This is fairly rare and only about 15% of sufferers have Classic migraines exclusively.  For me, the first sign I was getting a migraine was a dot of coloured light in my vision.  This grew to a small wavy line, usually in my peripheral vision, and eventually turned into a jagged multi-coloured light show a bit like looking through a Kaleidoscope.  My vision was often obliterated, and I always felt really spaced out and woozy, which meant I had to lie down.  I didn’t have any head pain with the Classic migraines though or any nausea.  The aura could last anywhere from 15 to 90 minutes, but the spacey feelings often lasted 48 hours after the event.  I didn’t take anything for these migraines, and often found if I ate some carbs (usually toast) at the first sign of an attack I could lesson the duration.

My thirties were a dreadful time, with an ever present dull, achy, throbbing headache and about 2 Classic migraines each week.  I was allergic to all the drugs used for migraine, like tryptans, and eventually became allergic to paracetomol and other painkillers.  I remember crying like a baby when I had anaphylaxis to paracetomol and wondering what on earth I was going to do for pain relief.  But actually, it turned out to be a blessing in disguise.  After stopping all drugs due to my reactions my headaches improved by about 80%, although it did take about 6 months.  Again, with the benefit of hindsight I realise I was having headaches to the headache medication which is actually more common than people realise.

After stopping the drugs, and by my early 40s, I hardly ever had a headache, and the Classic migraines were down to about 3 a month.  Which would have been fabulous news had the Common migraines not begun.  I stopped having migraine with aura, and started instead with the more commonly known migraine symptoms: prickling skin down the side of my face, intense pain over one eye (sometimes turning the eye blood shot), painful stuffed up sinuses, and pain over one side of my head which felt like a rat was eating my skull from the inside.  Some of my Common migraines have been so painful I’ve literally curled up in a ball and prayed to die.  The migraines can last anywhere from 24 to 72 hours and at times I literally haven’t been able to move my head for the absolutely horrendous pain.

About 3 years ago the nausea began.  Until then I hadn’t really had nausea with my migraines, but now I feel sick to my stomach and literally can’t eat a thing.  I have actually vomited, although this is thankfully rare.

Along with the nausea came a switch in sides and intensity to the pain.  Before this my pain was always right-sided, but this has now changed and I also have left-side only pain, or all-over head pain, both of which is excruciating and I know if I get a left-side only migraine it’s going to be a 3 day job.  I also still feel spaced out, often dizzy, extremely tired and can be very dyslexic for some days following an attack.

On top of the Classic and Common migraines I’ve also had Menstrual migraines for the last decade.  June was the first month in 10 years I didn’t have a period-induced migraine, though I’ve made up for it this month by having one which has lasted 3 days.  I also tend to have a migraine around day 17 of my cycle for some reason I can’t quite work out.  I don’t know whether the menopause is going to help the situation, or make it ten times worse due to falling hormone levels.

It isn’t all doom and gloom though.  This year has been the best for 2 decades in terms of headaches and migraine frequency.  I hardly ever get a headache, and my migraines are down to about 2 a month.  In fact in June I went 6 entire weeks migraine-free – the longest period in 20 years 🙂  I’m not sure if this is down to my low histamine diet, or the peri-menopause and a change in hormones.  Whatever, I’m just grateful!

Coping with the pain of migraine when you’re almost totally drug allergic is hell…….really, there’s no other way to describe it.  All I can do is wear a cool gel strip on my forehead, put either an ice pack or hot water bottle on my head, wear a hot neck wrap to help the muscular tension and wear acu-pressure bands on my wrists for the sickness.  I’ve got to be honest – none of it helps much.  Sometimes when the pain is on the right-side of my head I can still function and watch a bit of tv, but when the pain is left-sided or all-over I just have to lie in bed until it passes.  I’ve just spent 3 days in bed with period pain, backache and a nausea-generating migraine, which started on the right-side of my head but switched on day two to the left-side – it’s been really boring as reading, watching tv or being on the computer just made the situation 10 times worse.  And then suddenly at 4pm this afternoon the pain just………..disappeared (though I still feel sick as hell)!

I was going to go into other types of head pain in this post, but it’s gotten too long already so I’ll save that topic for another day.

My Mum gets Classic migraines with aura and mild headache, but thankfully not Common migraines with the severe head pain or nausea I experience.  I also have a cousin with an extreme and rare migraine disorder called chronic hemiplegic migraine, so migraines obviously run in our family.  I have a pet theory that mast cell disorders run in our family too, but can’t get any of the affected family members interested enough to find out which is frustrating.  My biggest hope is that as I age the migraines will lesson, especially as they are currently mainly connected to my menstrual cycle.  Time will tell!

 

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10 thoughts on “Migraines & Headaches

  1. kneillbc

    Yet another thing we have in common! I empathize with your migraines! I suffered from migraines from age 15 to about 35. I got ones that had pain on one side of the head, and an aura that remained throughout the 72 hour event. I knew when they were coming- the day my menses begin. Interestingly, they stopped when I discovered a mild IGG mediated allergy to the cassine protein in milk. The moment I cut down the amount of milk and dairy I was consuming- especially around my period, they stopped. I’ve had two since. Interestingly, milk (only plain milk and cream- no other dairy product) is one of three foods I can eat now… With only relatively mild allergic response. Do you find that there is any food connection for you, or is it purely hormonal?

    I know how lucky I am to have escaped my migraines. They are truly tortuous. One of my pet peeves is when people self diagnose migraine, when what they really have is a nasty headache. I recall once, several years ago, there was a woman at work who claimed she had terrible migraines. Yet, she would get them, not take anything for them, and sit at the lunchroom table carrying on a perfectly normal conversation. I’m sure you feel the same way- migraines are NOT headaches. They usually include a headache a as symptom, but migraines are SO much more. Anybody who has ever really had one knows it without a doubt, and it is all-encompassing! I tell people that it’s like being in love- impossible to discribe, but you know it when it comes! Love is a touch more pleasant though! 🙂

    I did not see you mention that you were sensitive to light during a migraine, although you did hint at it. Are you? I know it is a common symptom, and it makes it all the worse- you can’t watch TV or ready because they’re too bright. I have a friend who listens to old radio shows when she has a migraine (there’s an app for that), I wonder if auditory might be better than visual stimuli for you?

    Glad the head pain is gone- I’m sure the rest will follow!

    Karen

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    1. bertieandme Post author

      Hi Karen

      Strangely enough I’m not overly sensitive to light during a migraine. If I go outside and it’s sunny I do wear my sunglasses, but I don’t have to have the curtains drawn in the bedroom like many people do.

      I’ve tried going dairy-free for 3 months and it made not one jot of difference to any of my symptoms including migraines. I can’t find any food trigger at all. There is an obvious hormone connection for me, although I do get migraines at other times of the month too. Being over-tired is never good and stress obviously can bring them on, but other than that they’re very random. My neighbour gets migraines and she can often connect hers to the weather, particularly low pressure or storms, but that doesn’t seem to trigger them for me either.

      I’m so pleased you’ve found your trigger and yours are much better 🙂

      Jak x

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  2. Sherry

    Hi there 🙂
    Just wanted to say that I suffer from headaches daily. Funny how some doctors do not believe this to be possible. Those are the moments when I wish I could zap my symptoms into them even if just for five minutes. Anyway… the really bad migraines are weekly for me and usually, just before they become nasty, I do not see an “aura” but my sensitivity to light is heightened dramatically and things like car head lights (we have daytime running lights on cars here) shimmer. When the lights are extra bright and shimmer, I know I am in for a bad one. I have chronic pulsating tinnitus and significant head pressure ALL of the time (spinal tap yielded nothing). Sometimes it gets so bad that I can barely move – let alone think. Often, when I brush my teeth or eat (chew) – fluid will exit my nose (gross – I know – but true). Doctor’s say little about that bit as well. I know that the illness itself, and/or hormones, food, environmental factors, medication…and so on – can all cause elevated head pressure but as is par for the course for me – the cause remains elusive. Like you, all I can do is throw on the oh-so-attractive cold packs on my head and neck and give into being a zombie until it lightens up – all the while feeling nauseous, dizzy, spaced-out, and as if I was on a drinking binge for a week (I don’t drink – body can’t tolerate alcohol.) Anyway, not much in the way of uplifting comments or suggestions from me on this one – ’cause I have no idea how to make this symptom more manageable.
    Take Care.
    Sherry

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    1. bertieandme Post author

      Hi Sherry

      I remember what daily headaches felt like and really empathise 😦 The thing which stood out most for me in your comment was the bit about fluid running from your nose. It’s not something I’ve ever had but I do know it’s something Diana Driscoll (doctor but also fellow EDS and mast cell patient) knows a lot about over at http://prettyill.com/ She’s been doing research on external communicating hydrocephalus and mentions nose fluid in this video:
      http://prettyill.com/videos/watch/external_communicating_hydrocephalus.
      She’s working on treatment based on the Driscoll Theory see:
      http://prettyill.com/videos/watch/why_eds_pots_patients_are_so_ill_relief_the_driscoll_theory
      http://prettyill.com/videos/watch/the_driscoll_theory_laymans_version_section_1 and
      http://prettyill.com/videos/watch/the_laymans_version_the_driscoll_theory_section_2_mast_cells

      Jak x

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      1. Sherry

        Hi Jak,

        Sorry for the late reply to your comments. First of all, thanks for taking the time to comment and to forward me the information on Diana Driscoll. I came across her work some time ago while searching the Net for info on what I was experiencing. Her videos, and the things she said, were very supportive to my situation and part of my push to investigate increased pressure in my head. I went through a lumbar puncture (twice, spaced weeks apart, as the first one was botched by an intern who was learning) and the outcome, although a measurement that at one time diagnosed intracranial hypertension (the ranges had recently been changed), was that I could not be diagnosed with high pressure. Just another moment for me to feel like I was losing my mind. But like many tests, it is only a snapshot in time and should really be monitored at structured intervals. I also tried some medication for head pressure (the name escapes me now – too many meds to remember) but the side effects were shitty and nothing changed for the better. My head throbs, I have loud pulsating tinnitus all of the time, I have vertigo and cannot lay flat as a result, I can’t bend over without it all worsening, and yes, liquid frequently comes out of my nose when I brush my teeth in the morning with my electric tooth brush, when I chew, or when I bend over. I am always happy when this happens as it means the pressure will be released somewhat…but the nasty heavy pressure never goes away completely and occasionally, I am distraught with discomfort. The doctors do not even comment when I tell them about the nose discharge…it is all very despairing at times. I am soon off to yet another specialist to investigate blood circulation issues within my torso and head…give me strength, give me emotional strength cause Lord knows I need it.

        Warmly,

        Sherry

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  3. Elizabeth Milo

    I, too, have always been headachy. And I didn’t develop classic migraines with auras until my late 20s. ME put headaches into a different stratosphere, with accompanying light and noise sensitivity. It’s probably my most debilitating symptom after post-exertional malaise (oh, how I hate that term). Having no painkiller options is really the cruelest part for me, too. Thank you for making me feel less alone. I want to reblog this and comment, “What she said.” X

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    1. bertieandme Post author

      I wanted to click the Like button. Only obv I don’t like that you have the Brighouse & Rastrick Brass Band in your noggin who play occasional gigs at force 10 volume, with accompanying light show. But I like that you like the post lol! 😉

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