How do I get DH to understand how I feel?

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Since I started my periods I've been getting migraines in the days leading up to my period.

At first they were occasional. Now I'm periomenopausal so about 3 years now and I get the migraines every month and they've got worse over time too.

They affect my sight, my hearing, my ability to speak, my balance and movements, as well as being incredibly painful and making me sick. I saw a neurologist who prescribed more triptans, beta blockers and prescription only painkillers and pregabalin. He also took scans of my brain and said that when I get migraines I'm pre epileptic. As it was explained to me I don't have PMS epilepsy but my brain function takes on some of the features of epilepsy without being fully epileptic. For the rest of my cycle the epileptic features are gone.

The pain is so bad that I had an operation last year and the migraine still hurt through morphine.

The result is that now I'm in a darkened room, unable to move for three or four days a month.

I do need to see my GP and the neurologist again when lockdown is over, I know that.

DH is someone who has to be doing something especially around the house every day. He knows he can't be unreasonable but he's getting impatient with the migraines. I need him to be kind to me. Instead, he's remote and irritable. Also he won't leave me to be alone in bed, he keeps coming into the bedroom for a chat or trying to persuade me to do household jobs or go for a walk or whatever.

DH is not a monster, if he knew how bad it is I know he would be understanding. As there's nothing visibly wrong I think he assumes that I'm alright really.

How do I explain it to him so that he will understand?

I don't know if this helps at all but a friend of mine who suffers from cluster migraines has been having a treatment for a couple of years that has completely changed her life. There is a specialist she sees every three months and they inject something similar to botox somewhere into her neck, might be some veins which are key to the migraine taking hold, essentially paralysing them, and she is pretty much migraine free until they wear off. The only thing is I believe this treatment is not available via the nhs and has to be done privately, and costs £250 ish a time. It would be worth looking into if it could work for you. Her symptoms were the same as yours.

The Botox treatment is available on the NHS but.... it's bloody expensive so they don't offer it very often.

There's no doubt that I need to seek medical help again. My GP says I've reached the limit of anything they can do to help. In our area you can only get a referral to a consultant in a proper emergency. We have access to private medical insurance through work but again, those consultants are overwhelmed with their NHS casework.

My last neurologist's appointment was via the NHS, this time I'll use my private insurance so I should be able to have the Botox treatment.

For years I had mirena coils and they were fantastic. Then in 2017 I had one inserted, it perforated my uterus, it caused an awful infection I was hospitalised and had to be removed surgically. The result is that I've been told that I cannot have another.

I've had HRT, originally I was prescribed Evorel Sequi, they helped with the migraines but didn't eradicate them. Then there were production problems and I haven't been able to get hold of them since October. There should be more available soon.

Last time I went to the neurologist I took DH with me.

I absolutely wouldn't complain that my DH is lazy, he definitely isn't. What he wants is my company, not for me to do household jobs. When we met our DCs were a range of 12 - 19, DH isn't very sympathetic with teens including his own whereas I worked very hard to build relationships with them, DH and each other. It really paid off, even though they have since left home we are all a solid family. I love my DSCs very much. That's what DH wants when he won't leave me alone to my migraine. So yes, firstly he has no concept of how much pain I'm in and also he wants my company.