Thursday, April 13, 2023

The Migraine Misery of Toots Mania - A Call for Help

 

For years, my daughter Tess has been calling me 'Toots'.

'What ya up to, Toots?'

'Is Toots feeling okay?'

Recently, on witnessing yet another of my middle-age mum foibles, she simply exclaims, 

'Toots Mania?!' 

...as if 'mania' is cover-all proclamation for any form of 'goofy' mother behaviour such as:

losing my keys for the third time in an hour; or accidently teaming a Kagoule with a chunky necklace, or my swift regret after eating too much almond and raspberry tray-bake.

"Toots Mania's gonna regret that.' 

 My 13 year old girl is all-seeing and mostly all-correct. 

But, if this is a story of desired corrections - the misery of my ongoing Migraines is Top of The List. You thought I was well, didn't you?

After the miracle of overcoming decades of terrible ME/CFS and a headache that lasted four years, how have I fallen back to battling the beast of migraine without any success? 

Defeated shrug emoji. 

Oh, Toots Mania. What will we do with you?

So this could be a reader-participation post. If you've struggled with migraines and gotten better, feel free to share your secrets with me. Please share your secrets with me.

I've tried -

Virtually all painkillers. Triptans take away the pain, but clobber me (like an anaesthetic) and all I can do is sleep. I love triptans. They are a furry blanket in a howling gale. The only drug that has ever helped the searing pain.

BUT, there is now growing opinion that the more you use triptans, the more 'trigger happy' your brain gets and ultimately, you can end up with more headaches. Doh. I am desperately trying NOT to take too many. 

Otherwise, I've tried - acupuncture, chiropractor, going on HRT for 2 years, coming off HRT, meditation, zero alcohol, epilepsy drugs, proprananol, etc. Lots of drugs I forget how to spell.  I try to deal with stress as best I can, while realising everybody has some stress. 

Lately, I found a website/podcast bold enough to call itself The Migraine Miracle. It claims that an 'ancestral' diet is the cure. That is, no grains or sugar. No almond bakes or chocolate croissants, for you Toots!

Nothing processed or out of a package. Nothing that our caveman ancestors couldn't find, walking around with spears - just meat and fish and 'low carb' veg. 

I was so desperate, I gave it a go. After 10 days, I felt like Ewan McGregor detoxing in Trainspotting. Carb-Queen 'Toots Mania' was in dire straits. Look away now. 

We were due to go on holiday, so I abandoned the diet, at least for the holiday. Cue normal holiday photos (minus migraine)-



I was barely home a day, and....wham...off the cliff into another two days of near-agony and incapacity, with the kids coming to the end of my bed like tentative sad dogs, checking when normal service might resume.

So, here I am, risen again, post-Easter, until the next time. I might try to go back to the diet, maybe in a less severe form, (sneaking in the odd oatcake). I'm wise enough to know that spikes and falls in blood sugar ain't good for the brain. Would a low Glycemic Index diet be enough?

I asked to see a neurologist on the NHS, but this requires me to try a 3 month trial of a strong epilepsy drug called Topiramate. A casual Google throws up medical papers telling me it can cause kidney stones in over 10% of patients

Fabby do! Spin the wheel...or maybe not. 

Ach well, time to get the laundry on the line. Normal service is slowly resuming. You'll see me body-swerving the pastry section, for this week at least. Onwards, fellow migraineurs. My hand in yours...our heads knocked thi'gither. 

3 comments:

Anonymous said...

I had terrible migraines for a long time. Sounds similar to you. Hormonal fluctuations of menstrual cycle were a big contributory factor I realised when I was postmenopausal. I craved sweet things but I think they exacerbated things. I went on Topiramate for about 5 years and really welcomed the total relief it gave me. No kidney stones. But I understand your caution. With hindsight I wish I’d been able to get really expert advice about the part played by the hormonal fluctuations. Hope you find a solution soon. It’s a terrible condition try to live with.

Anonymous said...

yoga?? get bad headaches possibly migraine-ish, always blame the wine… yoga w adriene has some migraine routines

Jacqueline Smith said...

You didn't mention trying homeopathy. I'm a practitioner of 25yrs and help is available.