Constant migraines!

[Bakbre]

Does anyone else have constant migraines please? I have suffered migraines since I was 18 (I am now in my 60’s). These were about 3 times a year. But for the last 2/3 months I am getting them every week, sometimes twice a week. I have spoken to my GP who sent me for a MRI which came back clear. So now I don’t think he knows what is causing them and I am stuck with painkillers. Can anyone help please?

[honeybug]

Hi Bakbre 😊🌿🌸🦋

Soooo sorry you are suffering with these agonizing headaches.

I’m across the pond and my mom has had these headaches since age 5. We thought she had a tumor in her brain her MRI showed both dementia and Alzheimer’s so every medication created rebound migraines. Sometime later it was suggested that Botox injections can prevent almost all migraines and what a marvelous treatment this would have been for mom if she didn’t react so badly to everything.

She will be 96 in December. She has been blessed by being migraine free for the last few years. Not sure but it seems like her Alzheimer’s has given her the relief from those horrific headaches...so blessed she isn’t still suffering from them with the Alzheimer’s too.

Try talking to your GP about this and ask him to guide you to the right place to give this a go.

I just prayed for you that you will get this sorted soon.

Please take care and stay safe

EvaJo aka EJ

😊🤗💗😘🙏🕊🌿🌸🦋

[Spandau]

Hello Bakbre

Sorry to hear you are suffering so much with migraines. Last year I went from having 3 or 4 migraines a month (for the last 30 years) to 1 everyday for 6 months. I ended up paying to see a neurologist who specialises in migraines and after discussion with my rheumatologist I was put onto the blood thinner Clopidogrel (they wanted to try me with baby aspirin but I am allergic to aspirin). My migraines have improved dramatically!

The reasoning was that my SLE causes my blood to be more ‘sticky’ even though I am not diagnosed with APS and this was causing tiny blood clots that were causing the headaches.

I had been on many preventatives, trial drugs etc and this is the first thing to work.

I hope you find something to help.

[Bakbre in reply to Spandau]

Thank you for your reply. I am to speak to my GP again tomorrow and I will have to ask him again for some kind of treatment.

[chrisj]

My son, who is 52, suffered terribly from migraines when he was at comp school. I believe it was stress that caused it. He's partially sighted and endured a lot of name calling that resulted in a break down. Our gp prescribed 2 lots of tablets, one to take when he knew one was was coming and another for the pain when it hit. He said later neither were any use. I cant remember the names of them they were pink and yellow tablets.

Things are better years down the line, he complains sometimes of feeling "out of it" seeing lights and colours but I believe the pain is gone. He takes an aspirin every day as he has a condition called septo optic dysplasia which puts him at risk of strokes. The doctor he saw said he needed the aspirin and thankfully we've had no problems with that.

I do hope you find some relief. I know my son suffered terribly with them xxxx

[Bakbre in reply to chrisj]

It was really nice of you to reply. I am speaking to my GP again tomorrow so I will see what that brings.

[miccika1]

There are a lot if treatments available. You can try one by one until you find what works. Botox was helpful to me as well as Nurtec. Everyone is different so some other ones might work better on you.

[Bakbre]

Thanks for reply and suggestions, I am going to speak to my GP again tomorrow and hope to get some answers. I would normally ring the Rheumatologist Dept but getting through is really difficult, if not impossible these days, but that will be my next action if I don’t get any joy with the GP.

The Botox sounds good though, but that’s for my wrinkles, never mind the headaches! At my age every little helps!

Thanks again.

[Chanpreet_Walia LUPUS UK]

Hi Bakbre,

People who have lupus have an increased chance of having headaches compared to the rest of the population, occurring in up to 72% of SLE patients. It is worth noting that in the vast majority of patients, headaches are not considered to be due to the lupus itself, but most likely have a separate cause.

We published a blog article on coping with headaches and migraines which you may find helpful - lupusuk.org.uk/headaches-an...

Best wishes,

Chanpreet

[Tempname]

Hi Bakbre,

You have my full sympathy, migraines are the worst. I'm having a bad run of them myself at the moment, and I've had one on 20 out of the last 30 days. I have Sjogrens and am on HCQ, and I take Zomig as needed for the migraines. It controls the pain well enough, but I still have the dopey feeling, extreme fatigue and light/sound sensitivity. .

One weird recent feature I have noticed is I get the migraines at 2pm everyday. I thought maybe it was the HCQ at lunch, but switching it to evening made no difference. Then I thought it was a dip in blood sugars before lunch, but having 2 small breakfasts and 2 small lunches hasn't changed it either. So I'm at a loss on that one! Anybody had a similar experience?

Some helpful advice I was given: if the thought enters your head 'hang on, am I getting a migraine?', then just take the zomig. Don't wait to see, you're not imagining it, just take the medication!

Hope you get some answers from your GP and you feel better soon!