Migraines....

[lindsay81]

I have recently been to see an occupational dr to prove I have lupus for my employer... Whilst there he asked my symptoms so I told him, severe fatigue, joint pains ad I also suffer with awful migraines. He has stated in his report he believes my condition will improve & that migraines aren't linked to lupus. My understanding is that no1 can say my lupus will get better or worse and that migraines are part of lupus...any help or advice?!?!?

[Lupylass]

Hi there Lindsay

I suffer with migraines which seem to get worse with lupus disease activity, or when my lupus meds are reduced. My rheumatologist was concerned, stating that it could be lupus affecting my brain, and referred me to a neurologist.

The neurologist said I had simple migraine with aura and that there is no link between migraine and lupus.

It just goes to show the difference in opinion between 2 doctors.

However, my albeit limited understanding is that both lupus and migraine are covered by the Equality Act ( which replaced the Disability Discrimination Act) and so your employer will need to make reasonable accommodations for you in the workplace. Hopefully your lupus will get better but you may need some support at work in the meantime. I needed reduced hours for a year whilst my disease was brought under control.

Can you consult a union or the citizens advice if you are in any doubt?

Good luck.

[Schnulke]

Hi there,

I´ve suffered from Migraines since my late childhood and I feel like that whenever I have a flare of Lupus the Migraines get worse - both in frequency and quality. There might be no direct connection but I think that my migraines get worse with my general physical condition. Like if the body wants to say: "I can´t go on anymore!".

[Paula1968]

I too suffer from migraines and have from the age of 12 (43 now). my doctors didnt take any of my symptoms seriously when I was a child even though I had sun rashes etc. I was diagnosed at 17.

My doctors have since taken my mirgraines very seriously however I have to say my Lupus doctor (organised scans etc) not my GP he nearly put me in hospital treating me with meds that didnt agree with me!

I think my migraines are deffinatly related to my condiditon the more fatigued I get the more migraines I get.

Hope you get sorted.

[Maya23]

I also suffer from migraines, they started when I was 16. I get different types:

I get the migraines with aura that starts as a pinpoint then zig-zags bigger and bigger over one side of my vision before the pain kicks in on the other side of my face and eye. If the aura lasts for more than a few seconds (sometimes lasting for half an hour) I know it's going to knock me out for the day.

Over the weekend I had small pin point auras which only lasted a few seconds but still got knock-out pain that made me sleep all day.

often I get 'migraine-like' headaches without the aura and start with a stiff neck, glands up, sore throat, and then pain in one eye. I get these really regularly and make me feel miserable.

I think they are triggered by the same things that trigger lupus flares ..like stress and for me food intolerances (cheese, chocolate. caffein) and hormones. I think they are directly related to lupus. I've had terrible attacks when on the combined pill, also the depro-vera injection, (also on my honeymoon!!)and so I know hormones and stress have a part to play!

[Maya23]

Just found this on The Lupus Site:

"Compared with the general population, lupus patients are perhaps twice as likely to suffer from migraine-like headaches.

Many patients also have antiphospholipid antibodies, while others display Raynaud's phenomenon.

Lupus headache is managed much like conventional migraine, using painkillers, anti-inflammatories, vasoconstrictors, & sometimes beta-blockers, or tricyclic antidepressants.

Lupus headache is different to most migraines, since patients may respond to a 1 week trial of 20-60 milligrams of prednisone daily, which is rarely useful to migraine sufferers."

hope that's helpful xx

[tintin49]

i have never suffered from migrains until i strated meds for lupus and having a long flare. its only the stroid injection taking the edge off it. i wish doctors took a vow of honesty and just said they dont know rather than being arrogant and saying no!

[blessing40]

Hie, yes headaches, migranes are part of lupus. You also need a scan. Because when I was diagnosed it started with really bad headaches, which was then discovered that it was cereberal lupus. You need to ask your consultant if you can have a scan.