Me and my migraines

I've had migraines since I was small. Until a few years ago, there was nothing I could do to minimise them. I am a regular visitor to hospital with migraines lasting up to 9 days. I've tried all types of medications and had all types of treatments from acupuncture to botox.

4 years ago I was diagnosed with a wheat intolerance and my migraine episodes have almost halved, but the intensity of the ones I do get are no better and aren't any easier to treat.

Lack of sleep, dehydration, long journeys, sitting too long, not eating regularly, over indulging with food/drink can all trigger a migraine. Cheese, chocolate, alcohol, caffeine aren't triggers. In fact the last time I was admitted to hospital in November 2023, I was given a can of coke and a coffee by the nurse whilst waiting for the consultant to see me. 

I keep a food diary, I used to keep a menstrual diary, there has never been a link with hormones/periods, I exercise regularly, but not excessively. I also keep a diary of my migraines, symptoms, been doing it for years. Finally I've been referred to a Neurologist so maybe they'll want to see it all, maybe they won't.

I'm 52. I've learnt to live with migraines, I've learnt to not let them spoil family days out, interfere with my work, activities, holidays. I've heard many times that if they don't interfere with the above then they can't be that severe. 

Let me try and explain what a migraine is for me.

It starts with one or several of the following:

The smell of burning toast

Amplified sounds

Lights hurt

Sensitive to touch

Slurred words

Inability to identify every day objects

Inability to answer simple questions

Nausea

These can last for 2-3 days and continue throughout the migraine and for 2-3 days afterwards. This is the point where I MUST take my medication. Triptans, anti sickness tablets, paracetamol. 3 times a day. If by the end of day 1 the pain has kicked in I then take 900mg of aspirin 3 times a day with the above, for up to 3 days, then seek medical assistance. The GP at this point usually sends me to hospital, but  sit for 7+ hours in A&E in pain with bright lights, loud noises, I'm put on a drip, the pain goes away. At this point I go off work sick and I'm literally smacking my head against the wall in desperation. It takes a further 2-3 days for me to recover fully.

I also take regular preventative medication, previously beta blockers, then pizotifin. After a while these meds stopped working and the dose had to be increased, side effects were increased appetite and inevitable weight gain.

I'm currently on topimate, side effects weight loss (which has settled now) but I'm still getting break through migraines, but without the pain. I still have to take the additional meds. I'm not sleeping on these meds, on the previous ones I was getting up to 10 hours a night.

In between migraines I get weird electric stabbing pains around my body that last for a couple of seconds and patches of skin that feel like it's on fire. I get dizzy, have pins and needles and numbness in my hands, but don't have a reduction in strength, I have a tightness around my chest, that squeezes me, I get breathless, especially walking up stairs, I have bad fatigue, but don't sleep and my eyes hurt and are tired (Ophthalmology and Retina Clinic involved for past 2 years) That could be the B12 or the ferritin deficiency or the cause of the migraines, no one seems to be linking everything together, or it might not be linked in anyway.

The pain of the migraines is one sided, usually right sided and forces my eye closed, the back of neck is painful and my shoulders hunch. Pressing on the site relieves the pain as does heat and strangely enough so does sleep, but when I wake up, the pain returns. The pain takes over everything, it is the only thing that is happening in my body. It is so intense that I often feel that the only way to relieve it is to hit my head against the wall. It makes me shout, swear, angry, it isolates me from people, it causes rows because I look ok, I'm functioning, I'm going to work, if it was that bad, I would go to bed. 

But if I went to bed, I would spend half the month in bed, half the month not going to work, not going out, not doing anything and I won't let the migraines control my life.