Headaches.: Hi.have been getting some headaches... - PMRGCAuk

PMRGCAuk

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Headaches.

Flosy profile image
24 Replies

Hi.have been getting some headaches again,is it a flare,havent had jaw pain,woke up sun with ear ache,but am having problems with ears,waiting to hear from e.n.t.have still got my dry eyes.

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Flosy profile image
Flosy
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24 Replies
SheffieldJane profile image
SheffieldJane

Have you had your ears examined Flosys? This has been dragging on for too long. It may be a middle ear infection causing all your symptoms. Then of course we have to bear in mind that Giant Cell Arteritis can affect the ears. I think your doctors should be treating this with more urgency.Don’t be hesitant about asking for help.

Flosy profile image
Flosy in reply to SheffieldJane

Hi yes I have had my ears examined it was all clear,but they wanted me to see e.n.t.i have to ring them what's going on.thank you.

SandraLinks profile image
SandraLinks in reply to Flosy

My GCA affected my ears. I kept going to the doctor thinking I had an earache, but my ears were fine. It was the artery behind the ear.

Flosy profile image
Flosy in reply to SandraLinks

Ok.thanks.

brambles22 profile image
brambles22 in reply to Flosy

Had bad earache temporarily - probably because of my GCA. It went away and only came back once for a short while.

Flosy profile image
Flosy in reply to brambles22

Hi.thats like mine.what did you do about it.

brambles22 profile image
brambles22 in reply to Flosy

Took a couple of paracetonol. It was a very sharp pain which went away after the paracetonol. Not had any since.

Flosy profile image
Flosy in reply to brambles22

Hi.thanks,that's what I do.sometimes they go away.thank you.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

What dose are you on.

Last post, you were reducing 10mg to 9mg with a review on 21st Feb. What’s situation now?

It’s difficult to say if it’s a flare, just because you don’t have jaw pain doesn’t rule it out....and of course you still don’t know about ears.

Have you tried painkillers to address headaches? Might be worth trying those initially....obviously if no better, then an increase in Pred may be necessary...but I think we need a bit more info to give sensible advice.

Flosy profile image
Flosy in reply to DorsetLady

Hi.i am on 9mg.due to go to 8mg 0n 3rd march.have been taking paracetamol,sometimes they help.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Flosy

I would be inclined not to reduce - until headaches sorted - and when you do by 0.5mg a time. Think you need to discuss with doctor if paracetamol only works sometimes.

Flosy profile image
Flosy in reply to DorsetLady

Thank you.

PMRpro profile image
PMRproAmbassador

Dry eyes will be with you for some time to come. It is impossible to say whether or not a headache is a flare just from saying you have a bit of a headache - you need to speak to a doctor. Have you tried paracetamol to see if it deals with the headache?

Tahiri profile image
Tahiri

Last October I felt my hearing had dulled and this was followed by earache. ( a year last October). This was all dismissed but notice was taken when a bulging vein or artery appeared on one temple. It was GCA and within a few hours of being prescribed Prednisolone the earache had miraculously vanished as had scalp tenderness. I’m now tapering very slowly. The earache was because the illness was affecting the cranial artery. I still haven’t regained what used to be acute hearing.

Noosat profile image
Noosat

I have tapered to 2mg doing one half very slowly after reaching the 9mg level. Sometimes I get a headache but because a strong dose of Tylenol gives some relief, I don't think it is flare.

I really don't expect my body to ever go back to the way it was 3 years ago. Therefore I havee to limit my actions and my expectations. Hope you feel better today. :)

Flosy profile image
Flosy in reply to Noosat

Hi.thank you very.

Highball profile image
Highball

Hi Fosys. I’ve not been diagnosed with GSA, but my neurologist thinks I might have it. I get terrible headaches, pain at the base of the neck, at forehead and sometime just everywhere it seems. When I get the headaches I just feel miserable and a sick feeling comes over me. All I can do is lay my head back and relax.

I also have sjogren’s which causes my eyes to be dry, amongst other areas, and other symptoms. For the past week or so I’ve been having more headaches than usual and dry eyes are more noticeable than ever before, especially when I wake up.

Your post has caused me to be more concerned. I have an appt to see my rheumatologist next week.

I pray you feel better soon. I saved your post to follow up with how you are. Hang in there...

I forgot to mention my ears. I have ring in my left ear and sometime there is pain, but more like it’s in the cartilage. Ear doctor had no answers. Sometimes when I have headache, dry eyes and that sick feeling, I put my drops in my eyes and a few drops of sweet oil in both ears. When the oil goes in it feels soothing and I feel it behind my eyes. The best way I can explain it is to say that It feels like it’s calming/cooling a hotspot. It gives such a relief.

Flosy profile image
Flosy in reply to Highball

Hi.where can I get sweet oil from,and how many drops to put in.i will try that.thanks.

Highball profile image
Highball in reply to Flosy

I get it from Walmart. I put 2-3 drops, maybe 4. It helped me, hopefully it will help you as well.

Flosy profile image
Flosy in reply to Highball

Hi.is that a health shop or order on line.

PMRpro profile image
PMRproAmbassador in reply to Flosy

It's an American supermarket.

Sweet oil is a traditional remedy for ear problems and is another name for olive oil - did your mum not use it when you were little and had earache?

healthline.com/health/sweet...

Flosy profile image
Flosy in reply to PMRpro

Think so.thank you.

Di01 profile image
Di01 in reply to Highball

Hi i suffer with a lot of dryness my eyes run from dry eye my nose is empty & feeling of dryness, my ears too all my skin flaky dry lips i also have ringing in my ear frustrating

Flosy profile image
Flosy in reply to Di01

Snap.it is very frustrating.i know how you feel.

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