Just a question

[TerriF]

Hi everyone,

While reading through the forums I noticed alot have posted about having headaches  and was just wondering, how (if they are) are headaches related to SS? I am newly diagnosed and feel like I really don't know much about it. 

Thanks in advance,

Terri 

[Scottietottie]

Hi Terri 

In all honesty it's hard to know whether headaches are related to SjS or not. Some sjoggies get migraines, some don't. Millions of people without SjS get migraines. I get headaches now if I'm out in the sun long - but maybe I would if I didn't have SjS as well.
Our sinuses tend to dry out and that can lead to headaches.
I was plagued by 'tension headaches' when I was young. An interminable illness can put anyone under stress and that can induce headaches.
Another thing that can induce headaches is constant pain killer use and headaches result if we don't remember to take the next lot of meds in time. Prescription pain killers can be addictive.

Take care - Scottie 

[missy1306]

I don't really get headaches anymore than someone without SJS but I too like Scottie will if I am in the sun/

Missy

[katyjo]

The headaches that I have experienced this year are not like regular headaches.  It feels like my lymphs were burning, They follow a track, from the back of my neck, to the back of my head.  The back of my head would hurt when I layed down on the carpet.  It would have pain at a specific point above my eyes.  If you look at a medical illustration of the body and where the lymph nodes run, you will know what I mean.   The pain always passes, then I think I don't have anything fatal.  I haven't been officially diagnosed yet, and I'm actually to get the confirmation or to be on medicine.   

[Patze]

Hi Terri,

Got to love the "sun headaches", get them whenever I'm in the bright sun for too long.  When I get run down, I get hit with the migraines and they are the worst.  As I told the neuro, it is like having a hangover without the fun of getting one (I just get the deer in the headlights look, oh well, that gal needs to party some more! ).

I don't know if there is a headache link to SJS, but I get migraines a lot more than I ever have, but that maybe just me getting older too (or a decrease of hormones, who knows?).

Take care -

Patze

[Poochie]

Hi Terri,
I never experienced any headaches with Sjs until my rheumy prescribed Salsalate for me.  I had a headache the whole time I was on it. (4 mos.)  Then when I told him about the headaches at my next appt.  he immediately took me off of it and prescribed something else.  I haven't had any problem since.

Good luck,

Pooh

[Chickpea]

Hi Terri

It seems that headaches are a medical mystery for everyone, not just Sjoggies.  Like many others here I get migraines, and have done since early teens.  They've changed over the years: the ones with bright lights and vision loss tend to hurt less than those without the lights.  I see auras before migraines and also at other times. 

I also get headaches I call 'Trotsky headaches' because they are agonising and feel as if someone's put an ice pick in the back of my head - that's the way Trotsky was despatched by Stalin's squad of assassins.  (You can tell I used to teach History!!) I haven't found any form of pain relief that touches this level of pain, but I've had fewer of them since being on Prednisolone.  (Thanks Katyjo for your post.  Your comments are making me wonder whether these are connected to lymph nodes - I'll ask the rheumy next visit.)

Then there are the exhaustion/stress/low blood sugar headaches which we all get, which are often accompanied by nausea.  As Scottie says, anyone with an AI is more likely to get these because of constant stress and ill health.

It's worth including headaches in your symptom diary because before diagnosis everything is relevant.  Well, it is after diagnosis too I suppose!

Take care - Chickpea

[TerriF]

Thank you everyone for you replies, it helps.

Hoping everyone has a wonderful day.

[jonnell]

Jenna and I both get heat headaches when out in the hot sun for a long time.  They are very painful and turn into full blown migranes.

[gsmraxe]

I'm the headache queen.  I was just thinking  about how my head is starting to hurt when I saw the topic for your post.

My sinuses swell shut they get so dry, which causes me to get migranes.  Since I quit smoking, I don't get headaches in the winter when it's damper, just in the summer when our dry weather kicks in.  I take ibuprofen which brings down the swelling and takes the edge off of my headaches.  My eyes swell and ache along  with the headache.

I don't know what more I can do, just tough them out and hope the summer doesn't last until December like it did last year.