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.

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?

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.