Migraine packs. 

After many years I have stumbled across a little concoction of medications that almost always kills a migraine if I take it at the right time. Taking it at the right time is of course half the battle. It’s so very easy to fall into the trap of “waiting and seeing” then by the time you take the medication it’s too late. You haven’t saved money, side effects or embarrassment by waiting to take the meds. You’ve just made things worse.

Anyway I always carry meds with me, an assortment of them, and they always lived in this:

Appropriate, no?

Prior to stumbling onto my magic concoction, this “roar case” was stuffed to the brim with various sheets or cuts of medication that may or may not have worked. Once I got my concoction together it got a little neater, but I then experienced having to painfully instruct my boyfriend through which three medications to find, pop and hand to me. So to help him, and myself, I decided to make “migraine packs”. Like so:

Handy, but suspicious to some I’m sure. 

As you can see, this convenient for me and my boyfriend, but might be hard to manage if I get frisked at an airport for instance. So I was excited today to find these little pill poppers:

They’re called GoTubbs

These are really neat. They store each bundle of meds in a neat, sealed environment AND they have a one hand quick open feature where you just squeeze the sides and it pops. Handy if I’m curled up in the fetal position in bed.

Observe:

 

This is the packaging if anyone is interested in hunting them down:


Take care everyone!

Advertisements

Do you suffer greatly?

I was at the book store recently, collecting a migraine book I had ordered. The book is called A Brain Wider Than the Sky. With that as its bold heading, the book store assistant hadn’t realised it was a migraine book, because she hadn’t looked closely at the subtitle (A Migraine Diary).

So when book store lady handed it over said “The title sounds interesting, what’s it about?” I said “It’s a migraine book.” Her reaction was my favourite reaction to my chronic condition I think I have ever had. She simply looked empathetic and said “Oh. Do you suffer greatly?”

This four word question was magical. It made me think. I thought not only about how much I do or do not suffer, but also about how whilst the level of suffering I feel may more or less than others,it is still a valid suffering. Because what suffering isn’t valid? So I stopped, took a micro moment to think, and answered honestly. “Yes. I really do. But I can work full time and stand here talking to you. So I’m lucky compared to some. But when they’re bad I guess I do suffer greatly.”

It was fantastic. My therapist had only recently said to me that I needed to recognise that just because I wasn’t permanently bedridden, unable to work and on benefits to survive does not mean that my migraines are not impacting on my physical and mental health profoundly. This one question asked by a stranger made me realise just how right my therapist was.

And book store lady’s response to my answer was even better. Rather than the usual platitudes about how she knows someone who gets migraines, or asking if I have tried yet another therapy, she simply said “I’m so sorry to hear that”, smiled with genuine empathy, and continued ringing up my purchase. She didn’t labour on or try to equate my experience to those of people she knew. She just acknowledged the reality of my situation.

It was a beautiful moment and will stay with me for some time.

A tea towel on my face and a starburst in my eyes

I am currently reading A Brain Wider Than The Sky: A Migraine Diary by Andrew Levy. He talks alot about aura, which is understandable given that he has aura.

I don’t have aura. Or at least I never thought I did. I just have pain. Blind pain. Dull pain. Burning pain. Permeating pain. Pain that I wouldn’t describe as throbbing, thumping, pulsating like most people describe  theirs. Just grabbing, clutching pain. There is also nausea, confusion, anger and depressive thoughts. But never aura.

But then again maybe there always has been and it’s just not the usual aura. The only time I ever thought I might actually have had an aura experience was less than a year ago. I was driving (I. Know. Excellent timing.), and all of a sudden there was this weird blur, or silvery shimmer, in my vision. It was in my right eye, listing to the right, and covered maybe a 3rd of my vision in that eye. It had a distinct shape, kind of like a stretched out South America on a map. It was gone in a few blinks.

A few weeks later I asked my doctor if she thought it might be a side affect of the Topomax I was trying (That’s a whole other post. Long story short, I’m no longer on it). She said “Well maybe, but do you realise you just described an aura?” No, no I did not. I couldn’t recall if my little vision event preceded a migraine, but it doesn’t really matter. Aura doesn’t really work that simply after all. I am now fairly certain it was an aura, and there are probably more to come. I’ll just add that to the list of symptoms that have changed or appeared since I turned 30 (another post on that soon too).

Any way, all this is to say that I have since been thinking a lot about the past 30 years and what might have constituted an aura that I have missed. This is somewhat complicated by my strong symptoms of having a sleep disorder (such as narcolepsy…a sleep study sort of ruled it out but didn’t). There are lots of questions to consider. What if something might have been an aura, but was actually a hypnagogic hallucination? Or a sleep deprived “ordinary” hallucination? Or just my overactive imagination? Or the epilepsy my sister displays but which was also ruled out for me? Co-morbidity is a complex beast.

Anyway, the only other strong example I can think of is from when I was very, very young. Maybe 5 years old. Maybe even younger. I remember being fascinated with dreams and thinking that if I tried hard enough I could give myself a dream. I laid in an armchair with my Dad and my brother nearby, they were preoccupied with the TV. I laid a tea towel over my face to stimulate the night. I covered my ears and squeezed my eyes shut really tight and concentrated. After a little bit, the black of my inner eyelids turned to a blue black and bursts of starlight came into my eyes. I concentrated harder and I started to hear the tinkling of Miss Kim’s magic mirror music on our local children’s TV show, Romper Room (and Dad had been watching the news! Was this success?). Then my brother Tommy’s tiny hand touched my knee and started me awake from my concentrated dream-state and I recall a feeling of bitter disappointment…the same one I feel to this day if I wake as I’m about to bite a cheeseburger in my dreams.

Those star bursts speak strongly of aura to me…but they could have been a dream. Or maybe I just held my breath in concentration and damn near passed out.

Regardless, aura remains a mystery to me. The only symptom that tells me a migraine might be coming is tension in my shoulders. But I also get that from hunching at my work desk, sleeping in a tight ball and just generally moving around in the world. A warning system like aura could be useful, but then again the ability to drive without a silver South America blocking your vision is also quite handy.

Ginger for migraine.

I have read a lot about ginger as an option for migraines. Specifically the commentary  usually talks about ginger working very effectively as an alternative for people who rely on sumatriptan, which would be excellent for those who get side affects, as well as for those who have a history of heart disease as triptans are not ideal for such people.

For me, there would be multiple benefits if this were an option. I have the family history of heart disease, sumatriptan is expensive, and most annoying of all I can only get four tablets dispensed at a time. The whole thing gets to be a bit of a fiasco sometimes.

Like any claim of medical miracle, I would take this with a grain of salt. In this case there have actually been some studies on this. In the most referenced one, looking at 100 patients, each patient was either allocated ginger (250mg) or sumatriptan (50mg). It was a blind study, so no patient knew which they were getting. The results were promising, showing very similar migraine reduction across both groups. However this is a relatively small study and probably doesn’t account for an immeasurable number of variables in the world of migraine cause and effect.

But considering the limited negative impacts of experimenting with ginger, and the fact that it will be near free for me to do so, why the hell not give it a try? I do like ginger alot, after all.

It took me a while to find a free article which talked about this in detail. This is the one that gave me the best information (doctormurray.com). As mentioned in the article, 250mg of dried ginger (which apparently did show positive effects) is actually a tiny amount. Many other studies apparently use 1g and the author of the above mentioned article considers that 10g of fresh ginger would be worth a try, and certainly would unlikely to be harmful. Juicing it is recommended as an option.

I’ve decided to give something simpler a go. I don’t think I’d be keen to try plain ginger powder out of the spice cupboard in hot water, it just sounds gross. But I’ve always quite liked ginger tea…though some brands leave a bit of an after taste. So a while ago I went down to my local Woolworths and added to the tea collection.

I already had this one unopened in my cupboard:

GingerKick

Higher Living Ginger Kick Tea

And then I purchased this one:

download

Nerada Organics Peppermint and Ginger tea

These are tea bag teas, but I decided to get up close and personal and deconstruct them. Here is a shot of what was in the bags:

File 4-04-2016, 8 54 10 PM

Nerada on the left, Higher Living on the right

As you can see, there is more content in the Nerada tea than in the Higher Living. The breakdown is as follows:

Higher Living, 27g teabag

  • 60% ginger (16g)
  • 40% lemon peel (10.8g)

Nerada, 60g teabag

  • 40% ginger (24g)
  • 60% peppermint (36g)

So the Nerada tea has much more ginger in it than the Higher Living. Plus I freaking love peppermint tea, for flavour and for digestive symptoms in general. It’s also good for the nausea associated with migraine.

Now I am aware that drinking a teabag tea, and not fully consuming the ginger, is likely to have a significantly reduced effect. But by my basic mathematics, the Nerada tea equates to 24g ginger which is 24,000mg, which is much, much more than the 250mg in the trial and is more than twice what the author of the doctormurray.com article suggests. If even half of the ginger can be infused into the hot water from the tea bag I will probably be getting the benefit that has been studied. And in future I may experiment with a more direct method, including drinking the contents of the teabag within the tea, as opposed to via infusion.

I’ll see how it goes. I always pick up these new possible treatments after a few migraine days, then things feel fine for a few weeks, then the migraines come around again and I gravitate toward what I know: I know sumatriptan (and valium, advil and a heat pack) works. The unknown may not.

But I will try to give this a go as a regular drink and also when I am feeling migrainey, and will update if I see any benefit!

The current situation…

Last time I posted was almost exactly 2 years ago. I said I would be blogging regularly from then but I didn’t. Lots of things got in the way. Life mostly. A breakup. Moving house. Turmoil. A new relationship. And migraines. Always migraines. In my last post I said I would be blogging regularly from now on. I haven’t blogged at all. I don’t even know if anyone has looked at this site. I doubt it. My other (completely stagnant) sewing and writing blogs occasionally get views I think but I’ve never even looked at the stats for this one. Yet this is the one I feel compelled to return to. Migraine still completely stifles my life at times and I want…need…to write about it, regardless of who reads it.

Since last I wrote I am back on preventatives. I trialled Propranolol first, and when that had adverse affects I was finally allowed to try Topamax. I’d read such good reports. And for the first 4-5 months it seemed to be helping. But lately I feel like I am back at square one. I have an Implanon rod in my arm so I only get my period once every 4-5 months. But every month, without fail, at around the 4th or 5th of the month, I get migraines. One month it will be walking migraine and I’ll just push through the few days until it passes. The next month I’m bedridden. The bedridden scenario is particularly likely if it clashes with a head cold or extra work stress or some other trigger or dilemma or pile on. This month I got a sinus cold and was vomiting in bed whilst trying to do work tasks that had to be done that day. The cycle is clearly hormonal, even without a period, exacerbated by whatever else my life or body throws at me.

On top of the migraines resisting treatment, the side effects of Topamax are not ideal. I have had heightened anxiety and feel like I’m touching on depression…though that’s usually when my migraines are at peak and I think it’s just an accumulation of dealing with this nonsense for 30 years. It’s actually been really, really distressing as everything else in my life is going so well and having lived with a chronic condition my whole life I have been blessed not to have dealt with mental health all that much myself, though I have certainly supported those closest to me. It has felt particularly cruel to be hit with this, and more than once I’ve found myself crying to my boyfriend “isn’t the migraines enough…I don’t need this bullshit too!”. Other side effects have included brain fog and memory weirdness, very occasional vision disturbances and tingling in my hands and feet. The brain and memory stuff is infuriating as I have a very mentally challenging job and I just need my brain to work. When it doesn’t I get stressed, and stress causes migraines.

Treatments for attacks are still Imigran FDT. Though I’ve finally conceded defeat and gotten prescribed Valium to take alongside the Imigran. It is SO much more effective. I only need a low dose and it simply helps my muscles relax so that my body can let the Imigran do it’s job. It’s just very hard not to wonder if people hear the word “valium” and think I’m just popping drugs willy nilly.

Anyway, that’s the current situation. A constant battle and experiment to try and fight this demon that latches on to the back of my skull and won’t. fucking. let. go.

I’ll update my treatment summary which can be found on the “My Story” tab.

Thanks for reading. I won’t promise to post regularly this time, but here’s hoping?

Update to My Story

It has been over 8 months since my last post and some things have changed.

  • I am now off my preventative and will be only returning if my migraines become frequent again. If I do return to a preventative, I will be trying a new one as Amitriptyline left me very drousy. This side effect only worsened over time and became intolerable. My current preventative measures are all lifestyle based. I am not perfect and don’t always get it right, but do my best. Amitriptyline was still a huge miracle for me as it worked to ‘reset’ my body to a migraine free state, from which to build a healthier life. I would resort to it again in future if other preventatives were not as effective.
  • My new migraine attack drug of choice is Imigran FDT which is a sumatriptan in a fast dissolving form. I originally found Imigran too slow to work, requiring me to lay down for up to two hours which was completely impractical (I work full time). So was using Maxalt instead (a rizatriptan). However I then found that with Maxalt it would wear off fairly quickly meaning I had to redose. Then my doc discovered that they had developed Imigran FDT which means “fast dissolving tablet”. It works very quickly and effectively for me, with no side effects.

My up to date treatment summary can be found on the “My Story” tab.

The original post regarding my treatments (now out of date) can be found here.

I am going to be very actively blogging from now. Migraine and headache are so vastly misunderstood I want to do something, anything, to raise awareness and support sufferers.

My Story

NOTE: This post is no longer up to date due to changes in my treatment since it was originally published (16/2/14). The “My Story” tab at the top of The Headache in the Room home page will always be the most current reflection of my condition.

I have suffered headaches and migraines my whole life. Over the years the following things have been considered when trying to determine causes:

  • Gluten/Wheat
  • Caffeine
  • Sugar
  • A bunch of otherwise healthy foods such as tomatos and mushrooms and spices
  • MSG
  • Flavours and colours
  • Spinal and skeletal problems
  • Hormonal cycles and changes
  • Sinus and hayfever flareups
  • An ovarian cyst
  • Sleep disorders or disturbances
  • ADD/ADHD
  • Stress

All of these things have been tested and eliminated as the cause of my migraines. Some of these things certainly do trigger an attack, but they are NOT the sole cause of my migraines.

I recently saw an exceptional neurologist who said three simple things:

  1. They are almost all migraines. It is most likely rare that I ever get a headache in the normal sense of the word. Just because I have learned to function with them (on good days at least) and do not experience aura or spots on my vision does NOT mean they are not migraines. They are ALL migraines, even the milder ones.
  2. My condition is genetic. All the elimination diets, hormonal manipulations, neck adjustments, supplements and treatments in the world will not cure them, so I am better off expending my energy managing them as best I can.
  3. My biggest trigger is clearly stress, this includes both good stress AND bad stress. I need to manage stress as best I can through all the usual methods, and can supplement this with targeted medications.

It was a HUGE relief to have a doctor say these things. I have spent years having doctors say things like “What you are describing is a bad headache, not a migraine”, “Just relax more!”, “Have you tried the elimination diet?” etc etc etc. This neurologist KNOWS migraines and knows what a migraine sufferer has been through over many years. I shed tears in his clinic at the relief I felt merely being understood.

My current treatment plan is:

  • Amitriptyline 10mg per night.This is a very low dose of a tricyclic antidepressant. It is taken at night to give me a relaxing, tension free sleep which in turn leads me to waking feeling fresher than I can ever recall feeling. Sleep and migraines had become a huge battle for me. I had started to fear sleep because I would wake up with a full blown migraine. I have only been on this medication for 2 weeks at the time of starting this blog (16/02/14) and I feel fantastic. I DO have concerns about weight gain. I currently have at least 15kg to lose due to the amount I put on when my migraines escalated to their worst ever over the last year. Some people GAIN weight on Amitripyline and I am in a position where I need to do the opposite. Luckily, my new found migraine reduced life is giving me an opportunity to exercise again. Further, the Doctor expects that when I am able to exercise again, there will be a natural improvement in my migraines and I may be able to cut back on the Amitriptyline, or even go off it all together, only returning to it if I escalate again.
  • The second part of my treatment is around when I DO get an attack. When I am in the “mild headache” stage, I take a couple of Advil. Advil is an over-the-counter liquid capsule ibuprofen and it works really well for me if I catch a migraine early. If the migraine becomes worse I am now taking Maxalt, which is a rizatriptan in a dissolvable tablet form (you sit it on your tongue). I have also previously used Imigran (sumatriptan), in both tablet and nose spray form, but have found it just doesn’t work as well as it should.
  • I also use Zofran (Ondansetron) if I get so bad I start vomiting. I have a ghastly intolerance to the usual anti-nausea drugs Maxolon and Stemetil. Zofran is my only choice and is RIDICULOUSLY expensive.

Some of the other things I rely on to ease my migraines are:

  • My trusty heat pack
  • Dencorub or voltarin gel
  • Spicy food such as ginger, chilli, curry etc
  • Hot cups of tea
  • Massage and chiropractic manipulation
  • Back cracking hugs from my boyfriend
  • Deep breathing
  • Seeing a therapist regularly to keep on top of stress
  • An occasional Coca Cola after a really bad attack

Everyone who has migraine and headache conditions is unique and this is my unique story.