Hello again. Diagnosed with PMR in August 2018, still waiting to see the rheumatologist!! However, cutting steroids still proving difficult with flare ups when this happens. I have worryingly developed headaches in the early hours (usually between 3 and 4 am although these happen only occasionally, lay night I woke at 3.30 am with pretty much unbearable pain in my entire head, particularly in both temples, but the whole head was hurting. Took paracetamol and almost vomited shortly after. It took an hour for the pain to subside enough to try and doze off again and I experienced horrible vivid dreams afterwards.
I must emphasise this is the worst head pain I have ever experienced and unlike a ‘normal ‘ headache. I’m scared the same thing may happen tonight and I will have severe head pain.
Is this a pmr side effect ? Or something else, I almost called an ambulance at one point due to the terrible pain, but waited a while for things to ease. Does any else suffer with headaches that wake you like this? Any advice would help please
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Ezio100
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What dose are you on now and what sort of taper are you using? If paracetamol helped the headache it's unlikely to be GCA or PMR related although it should certainly be mentioned to your doctor. And if you have any visual disturbances hie thee to the emergency department of your hospital without delay. Better safe than sorry.
If you have never experienced a migraine before it could be what you've been experiencing. Migraine can manifest in different ways. My brother in law lost the power of speech for a while and after all sorts of investigations it was determined he had suffered a "silent migraine" and decades later he is still alive and very well, although at the time it was thought he might have had a stroke. Migraine can make you feel nauseated, and often the headache will go away once you've vomited.
There are a number of things which can cause migraine, although being a sleuth and finding your own triggers can be difficult. Certain foods, dehydration, stress are common triggers. Migraine is not the same as a regular stress headache as there is a vascular component to it. I once had what my doctor called a "vascular attack" which I learned long after was a fancy name for migraine which wasn't presenting with a headache. I've had migraines which feel like the side of my head is being scraped out with a spoon.
I know there are other types of headaches which also are extremely painful, cluster headaches for example, and perhaps one of the other types fits your symptoms better.
One other thing I learned which helped me last year was I started to develop morning headaches, waking with a headache, which was very unusual. This was something which developed gradually over a number of years, coming to a head (no pun intended) last spring when I was waking with a debilitating headache nearly every morning. Not as crippling as what you describe. But the cause turned out to be salt deficiency. As pred does mess with our electrolytes something like this could, perhaps when added to some other trigger, be causing your headaches.
Thanks for that Heron, I was started on 40mg and given a taper of 5mg per fortnight which others have said is far too quick. I got to 15 and experienced lots of symptoms again. It’s crept back to 27.5 and when I try to cut, the shoulder, hip and elbow/knuckle pain begins to return. It’s demoralising really, I feel I’ll always be stuck here. The headaches are new, starting a month ago, sometimes waking with one, but lately, awoken at between 3 and 5 am (probably 5 times this month) . Until now I usually got back to sleep with difficulty until last nights blinding pain in both temples, I mean I couldn’t touch my head and coughing was impossible! I took paracetamol and to be honest 2.5 of pred. Not sure if either helped or eventually It went of it’s own accord. I was really foggy this morning and thoughtless (does that make sense?) . Im open to migraine idea but always attribute everything to my PMR which is silly I guess. I’m 53 and feel 103 at the moment!
I really think you need to consult a doctor about this. Sooner rather than later. I didn't realize you had also taken a small additional dose of pred. It sounds like this is something which has been getting worse over the past little while and that's not a good sign. Better to nip it in the bud now. Please keep in touch, let us know how you are after you've seen the doctor.
"I must emphasise this is the worst head pain I have ever experienced and unlike a ‘normal ‘ headache."
This is a typical comment from someone with a GCA headache. I'm not saying it is, the transient nature doesn't support the suspicion, especially if the paracetamol helped. But it is something that should be reported to your GP - who possibly should try to arrange an emergency (not urgent) appointment with a rheumy. If you develop any visual symptoms and it gets worse then don't hesitate to call an ambulance.
Thanks pro, I’m beginning to think GCA tbh, this scares me, I don’t want to lose my sight. It was genuinely pain and not typical of headaches I have had. I’ll chase GP up as was referred in December, the local nhs trust are ‘struggling’ to offer appointments as they’re recruiting apparently so I’ll request a referral elsewhere unless I see somebody really soon. If the pain is that bad again, I will call an ambulance! I’ll also try and see GP tomorrow.
I agree with PMRPro. You need to treat this unusual head pain as an emergency and have GCA officially discounted. One in five PMR patients go on the develop GCA, these are not good odds, if my memory serves me.
If you can get into the GP tomorrow as an emergency appointment please do so.
If you can't arrange the quickest appointment you can with the GP , and keep trying at the time your surgery takes calls for emergency appointments until you can get in.
This definitely needs investigation as soon as possible , and the GP needs to make sure that the contact Rheumatology for an emergency appointment.
If you already have a letter from your Rheumatology Department , telling you the name of your consultant forcyour first appointment you can also ring the hospital and ask to speak to that Rheumatologists Secretary too , tell the switch board it is an emergency if they ask.
You can tell her you are a new patient still waiting for a first appointment for PMR but that you have had this spike in headaches , pain and nausea recently despite an increase in steroids and would like her to tell these details to the Rheumatologist and ask what you should do next. Ask if they can call back with some advice. They will.
They may just give the most useful advice or have arranged an appointment forcyour when they call back.
If you are still left waiting quite long and the pain is still intense , go to A and E , waiting isn't worth it if you have already been diagnosed with PMR. Action saves eyes!
Of course , it could still be severe migraines , possibly caused by the dip in Pred levels in your system before your morning dose if you are still not on a high enough dose . And they could be caused by vitamin and salt deficiencies or dehydration. So in the meantime drinking more fluids , especially mineral water and green tea , and adding a good multi vitamin and mineral supplement to your morning pill intake will help.
My other tip for severe headaches is to put ( oddly !) a smear of Vicks or any Menthol Rub on your temples , it cools them and reduces the pain , as long as you are tolerant to it.
Putting pressure on your temples and above your sinus with fingertips for a few minutes then releasing and doing it again a couple of times before putting on the menthol also helps . Eating or drinking something that settles the stomach like ginger tea or flat ginger ale or probiotic yoghurt with honey can stop the nausea before you try taking the painkillers.
Distracting your nerve impulses by putting pressure on your ear lobe then releasing it every 30 seconds on each side for about 5 minutes can help.
And staying in a dark quiet room and being comfortable .
But these are all just tips , you still need to get to the route cause be it GCA , PMR or Pred related or Chronic Migraines , you need medical help and instruction asap.
To paraphrase Shakespeare , " Get thee to a GP , Go!"
I did when diagnosed with GCA and painkillers did not help. Did the paracetomol help you - you said you were sick? Migraine?
You need to get checked out and if you get any visual disturbance go straight to hospital. Don’t worry about being wrong.
The headache you describe is how I described my GCA headache. Have your BP checked too - it can go awry with this illness. It could also be withdrawal symptoms - they come on the same day as a reduction and should go within a few days. Think you’re reducing too quickly anyway and most likely withdrawals. In that case you should go back to the dose you were pain free on and stay there until all symptoms have subsided. If they don’t it’s possibly a flare. I suffered exactly the same and took a while for me to get to know my body and how it reacted to tapering. Either way see your Rheumy/GP as they need to know what’s happening to be able to manage it.
Your pred dose is higher than the usual for PMR? You don’t get those types of headache with PMR alone.
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