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.
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Cycleman
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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.
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.
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).
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.
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.
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.
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.
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.......
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)
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.
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
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.
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Horrible gca headache!! (and update)
GCA? or something else?
Question for those with GCA
SUSPECTED GCA ANY ADVISE PLEASE
