I am reasonably well and am on a maintenance dose of 5mg Pred and 100mg Azaathioptine daily.
I have been getting an intermittent stabbing pain around my left ear but I can't really decide whether it is in my ear or my head. The other wierd thing is that brushing my hair on the left side is really uncomfortable, sort of super-sensitive.
The pain is quite severe when it comes and has been waking me at night. But the it just goes away again.....till the next stab.
Does this sound like anything I should be seeing the doc about? Feels a bit of a non-symptom as it's not there all the time.
Thanks for reading this.
Heather
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laidbackreader
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Hi Heather. I have these pains just as you describe. I have been diagnosed GCA (giant cell arteritis). You need to speak to your GP and ask his advice.
I was diagnosed with CSS in Dec 2003 after I'd had two 'stroke type events'. Been on Aza ever since and up and down on pred . Flares usually show themselves with a cough and chest symptoms. Not sure whether this pain is nothing to do with vasculitis but it is very peculiar and I've not had anything like it before,
I'm in North Staffs and have been seen at the University Hospital in Stoke since diagnosis. Can't get GP appt till end of next week but I'm feeling ok apart from these intermittent pains. Thanks to everyone for their helpful comments.
It took over a year for me to be diagnosed initially (by which time I had been disabled by strokes). Consultant wasn't happy that he couldn't get a lung biopsy the as I'd already started on cyclophosamide but was ok with CSS diagnosis. Surely it's not possible to have two types of vasculitis??
It's possible to have the symptoms of more than one autoimmune disorder - and sometimes they then call it an overlap syndrome. It all depends on which arteries are affected - the name is less important.
I agree with babssara - in the absence of any other diagnosis if someone described those symptoms to me my first thought would be GCA - the scalp pain is very typical. It is a vasculitis that affects the elastic part of artery walls. It is perfectly possible that other sorts of vasculitis could replicate the symptoms - but I think it is definitely something to get your specialist to consider - always better safe than sorry. The dose of pred you are on isn't high enough to manage GCA and the aza won't help a lot if that is what it is.
As a patient, I often think it is about time Rheumatology started looking into antigens in patients, which are causing the vascular inflammation / necrosis etc. My neuro thinks there's always some virus or /and bacteria infection which could well be driving these vascular diseases in some unfortunate patients (me included). There are lots of papers which suggest this to be the likely indirect or direct causes behind "vasculitis". If this is the case for us, in theory, behind the different labels (names of different types of V), there is a commonality. So, yes, it seems that the scalp seems to be one of the common sites for this type of vasculitis. I often wondered as to why the scalp? But it seems this is so common shared by so many (I, included).
Hi, about 13 years ago I took pains as you describe, after a few days the pains became almost constant, and it felt as if I was having electric shocks in my face/head. Impossible to sleep. I went to dentist as emergency in case it was a tooth nerve but after xray was told my teeth were all fine so went to GP after a night of NO sleep at all due to the pain. She sent me directly to hospital as she thought I might have Trigeminal neuralgia. It turned out I had. Really strong pain relief was administered. It did eventually go and thankfully I haven't had it since.
Hi. The symptoms you describe were some of my earliest symptoms that something was not quite right. I too ended up seeing the dentist who could not find any reason also my GP who likewise had no idea of cause. It later developed into into more intense pain in sinuses, face, head and ears and then loss of hearing. I was finally diagnosed with Wegeners GPA so would advise you to seek further medical advice.
I would definitely get this 'checked out', even if it is 'nothing'-I would rather have a hundred 'nothings' checked than miss an important one! To paraphrase your 'post' name' please don't be too laid back on this issue.
Merry Christmas, and a Happy New Year, to you and your family.
Thank you to everyone who has responded. It's reall helpful to know that this community supports us and has such a wealth of knowledge....often gained through personal experience!
I have an appointment to see my GP next Friday so I'll take it from there....
The signs and symptoms you describe do fit with Giant Cell Arteritis and the big worry with that is that it can sometimes cause sudden and irreversible loss of sight, so it does need checking out properly.
As PMR pro said, your current pred dose would not suppress it. it's a big jump from CSS to GCA but with vasculitis and other auto immune diseases anything is possible!
Hi, I had the ear pains myself a year ago then lost the hearing in my right ear and had it replaced with tinnitus. They did a head scan MRI to look for a cause and found, incidentally as it were, a pituitary adenoma, this is creating too much growth hormone which in turn is giving me daily headaches and what I would call 'spiky' pains around the eyes. Acromegaly. That's not to say that's what you have yourself, but with all the possibilities including a new vasculitis effect, you should always get new symptoms checked out in case there's more to it than meets the eye.
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