[jeni2k7]

I was diagnosed 2 years ago with Lupus, and since then over time i've learnt to deal with most of my symptoms except for the headaches!!!! .. sometimes they last a few hours.. others 3-4 days. I get distorted vision, as if im in a fish bowl. My doctor gave me some maxalt which worked for a few weeks, then stopped even helping in the slightest. I later got put onto Half Inderal LA 80mgs, which worked for abit longer.. but now neither are working and im still suffering from really bad headaches, which i think is causing me to sleep more, and feel drained all the time. i slept for 15hours last nite! and i feel like im in a no win situation because i know sleeping too much can cause headaches too! can anyone help?

 

[miss_gladys]

Headaches

Not sure if this will help for you but my neurologist put me on Topamax and it works great. I have to take it all at night though (100 mg.) cuz its makes me too sleepy if I take it in the morning (I'm a teacher).

You'll start gradually and increase the dosage. I haven't had an aura or serious migraine in 3 months. I started taking it in June.

Best Wishes
Michelle

 

[Katharine]

Hi Jeni,

I think that headaches are truly one of the most difficult things to treat effectively as there can be so many causes. They are also one of the most frustrating and debilitating things to suffer from.

I have had years of bad headaches. All examinations (neuro, MRI etc.) revealed nothing of note and no-one seemed to have an answer. They first went for a while when my disease activity was better controlled. Then a few months later I got them again. They were slightly different and despite more stability in my lupus were not going anywhere.

I have recently been put on a med that can help if the headaches are due to either APS or vasculitis and so far (touch wood, it's only been three weeks) it seems to be working. I have to stress here though that that med is not a headache med, I was also having pretty significant cognitive problems. Everybody's case is different.

Basically what I'm saying here is that there can be so many causes but unfortunately docs will tend to "ignore" it a little unless you have bad examination results so I think it is important not to let it go. If you don't already see a neuro I would definitely try that route and if examinations haven't been done then I would hope that he/she would do that.

I would also want to know if you have been checked out (blood test wise) for APS. If you haven't, then it would be just worthwhile ruling that out.

Katharine

 

[cath]

Hi Jeni,

I am sorry about your headaches. Which doctor is helping you with them? Have you told your rheumatologist? What does he/she suggest?

I wonder if it would be an idea to seee a neurologist for some specialist advice, especially since you are getting vision problems with the headaches.

Lupus headaches can be notoriously difficult to manage and to live with though.

Gentle hugs,

X C X

 

[halfpintfl]

Hi Jeni, I am very far past the age of 50, and have battled migrains since the age of nine. There are a lot of meds out there, so you can keep trying, if you want, you might strike gold. I finally found something that someone found out that it works. Just Google the word "feverfew", it is a natural herb, and you can get back-up info on it in a plant book in the library, one of the newer books. best of luck, smile.

 

[mary520]

Hello Jeni,

Sorry you're feeling so rotten. Headaches and fatigue are my biggest lupus problems, too. Hope you find something that helps.

Mary