GCA indication

[Cycleman]

I’ve had PMR for 4 years now and have managed to taper down to 1mg per day.

A few hours ago I was standing in a queue and I started to feel a headache at the back of my head, which over a minute increased in severity. It felt as if I had been “sandbagged” on the back of my head. 5 hours later the pain is still there, dull rather than sharp. I should stress I have never suffered from a persistent headache in my life. My thought was possible GCA onset although I don’t have blurred vision or stiff jaw. Any advice would be welcomed.

[DorsetLady PMRGCAuk volunteer]

Possibly the start - blurred vision nor jaw claudication don’t necessarily appear early days.

Could try painkillers - if they work unlikely GCA.

If they don’t, then maybe an extra few mgs over the weekend - again to see reaction.

But try and make GP appointment for next week (I know, I know!) - any new headache needs to be investigated whether GCA or not.

Obviously if things escalate over weekend then 111 or A&E - just to make sure.... and impress PMR/possible GCA link - don’t be fobbed off.

Hopefully it’s not, but please keep us informed.

[Cycleman in reply to DorsetLady]

Thank you For your swift reply.

I was thinking of trying 5-10mg which seems small dose for GCA but could see if pain is alleviated. I took Two paracetamol which didn’t seem to have much effect. Lying down with my head covered made it go away. Having a headache like this is a totally new experience for me.

[DorsetLady PMRGCAuk volunteer in reply to Cycleman]

Lying down helping doesn't really sound like GCA - perhaps a migraine, never had one, but blocking out light sometimes helps I think.

Hopefully others may have more suggestions, but as I said it does need following up, as and when you can.

[Cycleman in reply to DorsetLady]

Thanks again

[PMRpro Ambassador in reply to Cycleman]

Positional headaches can have some causes that need to be looked at sooner rather than later. This:

healthline.com/health/posit...

sounds scary I know but the most common cause will be BP.

But with it being a BH weekend - don't just ignore it if it doesn't improve.

[PMRpro Ambassador]

There are other causes of headache besides GCA. Do you have any other symptoms of any sort? Anywhere in your body? If you do, it gets worse or you can't think through the pain do call 111 for advice.

[Cycleman in reply to PMRpro]

Thank you for your reply. No I don’t have any other symptoms other than being a little light headed, but this is probably because I am distracted with the situation.

To be honest the pain is quite bearable and probably nothing like what I imagine migraine sufferers to go through. However it does feel that I have been whacked solidly on the back of the head. The pain is constant and dull.

My main concern is that it came on so quickly and I have never before experienced a persistent headache of this nature. I will make sure I keep hydrated, take it easy and see how it goes over the w/e. Before contacting my GP ( who is pretty good on these matters).

Thanks again for your advice.

[PMRpro Ambassador in reply to Cycleman]

It is the sudden onset and new to you that concerns me too.

[Marijo1951]

This sounds very similar to the GCA headache that I experienced.

I'd advise going straight to A&E at your nearest hospital with a rheumatology department. Explain you have PMR and your current symptoms could possibly be those of GCA and that you need to see a rheumatologist. If the receptionist isn't amenable, say you risk losing your sight.

You could ring 111 first but I'm sure that's what they would advise you.

[Cycleman in reply to Marijo1951]

Thanks for your advice. As the pain is quite bearable I will see how I am tomorrow before deciding to ring 111.

[Marijo1951 in reply to Cycleman]

I hope all goes well for you. If you do go to hospital, you can be sure the doctors won't treat you like a time waster, even if you turn out not to have GCA. They understand better than most the importance of checking out these symptoms.

[pinks33]

If you go to A&E they will test for inflammatories, which may shed light on whether or not it is GCA. Last summer I developed a headache which varied from mild to moderate to severe, and lasted every day for 8 months. At my visit to A&E my headache was at its worst but CRP was less than 3. Bloods throughout the 8 months were normal. CT scan normal. Paracetamol not much help. GP diagnosed a tension headache, about which I have my doubts. But pain completely gone now - only to be replaced with a GCA flare! Like you I had never been a headache person (before GCA struck), and it's hard to accept that new persistent headaches are either nothing sinister or have nothing to do with GCA, even indirectly.

[Cycleman]

Thank you

[Telian]

If it is GCA pain killers or lying down won’t alleviate the symptoms. Try what DL has advised re pred then you’ll have a better idea.

Think you need to get seen sooner rather than later as sudden onset headache needs checking out.

Best wishes.

[yogabonnie]

DID you have any visual distortion or auras?

[Cycleman]

Nothing.

[Cycleman]

Thank you for all your advice. I am writing this from my hospital bed.

I called 111 on Sunday morning when the pain was particularly bad. They advised me to go to A&E “within the hour”

Got there and was checked out by nurses then a doctor who put me in for a CT scan - Clear, then scheduled for a lumbar puncture to check for bleeding. The rationale being to discount potentially dangerous and urgent conditions. They did blood tests in between which were all normal.

The Lumbar puncture was “ murky” so the sent for a second opinion. I’ve just been woken to go for a second scan this. time using a dye. Not sure if this is because they decided that the lumbar puncture did show blood and they wanted to find the leak, or as an auxiliary test to confirm if there is a leak or not. Hopefully I will know in the morning. Doesn’t look like GCA though. Pain has almost disappeared btw.

[Hidden in reply to Cycleman]

Well done! Sorry to hear that you are in hospital and I wish you well, a swift diagnosis and a subsequent speedy recovery.

I actually think that by making the right choice and seeking help promptly from health professionals has ensured that you will be treated appropriately and recover. I am so glad that you did not take advice re self medicating with powerful drugs at our disposal, which may have impacted adversely on the investigations you are being subjected to and at best delayed correct diagnosis and at worst.......

[Cycleman in reply to Hidden]

Thank you, You are right, best not to grab at the easiest available solution Especially for a symptom which could have 101 causes.

[PMRpro Ambassador]

I feel rather relieved you did call 111 - and that they took appropriate action to rule out the scarier things. Hope it is all sorted soon.

[Cycleman in reply to PMRpro]

Yes it was the right decision. I am a bit frustrated as noone on the ward has access to the results and I have to wait for the doctor to come on his rounds, which being a bank holiday is taking time. I’m quite sanguine about it but my family (esp my wife) are very anxious)

Thanks again for your interest

[PMRpro Ambassador in reply to Cycleman]

Bet they are - and not quite how they envisaged spending BH Monday!

[Cycleman in reply to PMRpro]

Just an update. The angiogram on Sunday showed a very slight bleed but no sign of an aneurism. I am now on complete bed rest until they do a repeat Angiogram on Monday. If no sign of further bleeding they will release me into Outpatient care. They have put me on nimodopine which ensures that arteries don’t clamp down if further bleeding.Headache is gone .

Bright spot is the food menu is amazing with two 3 course meals per day including lots of stodgy puddings with custard.

Any no longer pmr/gca related so I won’t post further on the subject.

Thanks to you and everyone for your advice.

[PMRpro Ambassador in reply to Cycleman]

Any opinions as to what led to it?

Actually - if you look back at the start of the thread it is very relevant to GCA and PMR. The first thing people with either think of when they have a headache is GCA. But sudden onset new headache, whatever your history, must be taken seriously and quickly. I'm so glad you did muck up the family's BH weekend - because if ignored it could have been a lot more that got got spoilt!

Enjoy your stodgy puds and custard - and don't complain if you put on weight

[Cycleman in reply to PMRpro]

Well I need to put on weight, unlike most commentators on Pred I never regained the weight loss initially put down to PMR.

My treatment here York hosp. Is being managed from Hull which is the nearest Neurology c.o.e so the doctors i see are not neurologists.

However the view seems to be that it was the equivelent of a graze and likely to be a one off. Possibl factors could be high BP ( which I don’t suffer from though it does jump about a bit) possible injury/ trauma( not aware of any). I guess I won’t know for sure until I become an outpatient and have a face to face with my neuro consultant.

[PMRpro Ambassador in reply to Cycleman]

Hmm - my daughter was in York hospital a few weeks ago - she found the food a tad beige!!

The wife didn't lash out in her sleep?????

[Cycleman in reply to PMRpro]

Well I Was one of the people who loved school meals- I used to return for “ second sittings”. There is a certain similiraty.

[PMRpro Ambassador in reply to Cycleman]

There were certain meals I'd eat now! Not many mind ...