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Discussion Starter · #1 ·
Anybody know how to get rid of a headache that wo n't go away. I get headaches anyway but for last 3 days had one that really hurts, its similar to a migraine but I can stand up and semi function. No painkillers knock it back. It is even there when I'm asleep when I eventually get to sleep. All my joints are also screaming. I am back at work tomorrow so any suggestions will be greatfully recieved.
Thanks
I've tried aspirin and cocodomol
 

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Hi -

I've had similar type headaches before I think - in my case it seemed to be referred pain from my chest and joints, but my rheumy sent me for an MRI to rule out anything more serious (it wasn't).

The headaches didn't really settle down for me until the flare became more under control - in the meantime, my GP prescribed some painkillers for me and they took the edge of the pain somewhat.

I think if you can you should try and see your rhuemy, or at the very least, your GP.

Hope this helps -

Nellie
 

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Hi, I agree with Nellie, you need to see your gp. They should be able to help you more. Let us know how you get on.

Take care

Deb x
 

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Like Nellie, my headaches are more severe when I am flaring or when the meds have not kicked in..... I have had the most time without headaches now I am reaching the 8 mth mark on plaq and on pred too (but reducing). Mine is definitely related to the MCTD.... good idea to get yourself checked though. Hope you get some relief soon.X
 

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Hi there :)

Headaches can be a real problem with or without lupus as it is often extremeely difficult to determine the cause.

I get lupus headaches which, as the others have said, are very much linked to disease activity and so, for me, went on for months and months. My rheumy sent me to a neuro to make sure nothing sinister was going on and we tried several different treatments to try and control them. It was extremely hard to find a solution and I'm not even 100% sure that the solution has been found (can you hear that I'm trying not to jinx it here :lol:). It can be a huge question of trial and error and it takes time and a motivated doc.

Another thing which might need checking out, if it hasn't already been done, is whether you might not have APS (Hughe's disease) which can cause headaches and can be associated with lupus.

Some things that can be tried are low dose betablockers which are often used as preventative migraine treatment, better disease control (headaches often spontaneously disappear when treatment kicks in or a med is added) or other meds (there's a whole range of possibility).

In any case you need to complain very loudly before any doc takes headaches seriously - they are extremely disabling but such a common complaint that it's pretty hard to get it looked into and also, admittedly, very hard for the doc to find the solution even when very motivated.

In the meantime I found that the only thing OTC that worked for me was paracetamol with caffeine (panadol extra?) but I'm very caffeine sensitive so maybe that's why it works so well (and I can't take it after about 1PM or I don't sleep at night!).

Hope you can get someone looking into it and that it eases soon,

Katharine
 

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My first lupus symptom was migraines at age 5. I've battled them on and off ever since. In 1996 I had a migraine which lasted 4 1/2 months. Ultimately, I spent a week in hospital getting them under control. I was put on using DHE-45 injections to get them down. It was a very long road back, but was lucky to have one of the best neurologists in the world here. He ended up moving me onto using neurontin to control them, and it did work. We've added a few things since then, and they do work. Now, as long as I take my medication combination I am headache free. I am down to between 5 to 8 per year.

My recommendation is to get in with a neurologist who understands how to handle autoimmune brain involvement. The first neurologist I saw decided I was more complicated than he wanted to deal with, and he wrote me a "good-bye" letter! So, don't despair if you are not getting help the first go round. Keep working for a neurologist who knows what cns sle and autoimmune brain involvement entails.

It is possible to get lupus brain involvement under control. Take care of yourself and don't get discouraged. You just may need to jump thru a few hoops in order to get to the solution.
Sally
 

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Discussion Starter · #8 ·
Hi. Thank you for your replies. i'm seeing my GP tomorow to see if she can help. I've had headaches similar that have put me in A and E but mri always clear. When i was there last time I vowed I'd never go back.
When I spoke to my rhuemie a couple of weeks ago I mentioned the headaches though they were n't as bad as this week and he said it sounded like it was caused by inflammmation and recommended I try azathioprine to try and control it. Guess it's worth ago if this continues.
I'll let you know how I get on. Thanks again.
Hope you all ok.
 

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I also have crazy bad migraine activity, had one for 5 days last week, mine get worse when trying to lower prednisone which I was doing last week, had to go back up a bit and with rest yesterday I was migraine free :), whew.

I also take Verapamil which is a calcium channle blocker and helps some but I still get migraines all the time and they are much worse with a flair. I have positive APS antibodes sometimes so they won't let me do the imitrex type meds.

I've tried many meds over the past 4 years and rest seems to be the best thing sometimes.

Good luck to you!
 

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Katharine suggested APS (Antiphospholipid Antibody Syndrome), which i've had for 6 years. i strongly suggest you get your blood coagulation checked. The theory is that micro-clots cause the pain. I used to have headaches almost every day for as long as i can remember. After starting coumadin, they disappeared.
 
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