PMRGCAuk
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Reason for headaches?

Hi, does anyone else suffer from headaches? And if so, do you think it is due to PMR or a side effect from pred? I've been getting a lot of headaches recently, no other GCA symptoms so I don't think it's that. I do get a lot of hot flushes too which wake me up in the night so I'm thinking maybe it's the pred? Appreciate anyone's thoughts on this.

Thanks

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Hi, jacdo. I very seldom get headaches. When i had the beast GCA headache my doc missed the diagnoses and focused on my blood pressure, which I guess can give you headaches. Have you had your blood pressure checked lately? Any allergies that could be producing them? Hope you get it figured out. Headaches are a pain. (No pun intended.)

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Oh I didn't think of blood pressure as mine is usually on the low side. I'll check that out as I've got a machine in a cupboard somehere, thanks.

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I get headaches and the strange thing is maybe I don't get any for weeks and then I'll get several in a row. Seem to be different causes. Foods with additives, dehydration, lack of sleep, hunger, sleeping with my neck bent awkwardly, allergies in pollen season, lack of caffeine. I do think pred gave me more in early days, but with all those other possibilities, who knows. I did get my eyes checked by an expert ophthalmologist to rule out GCA. Have just flown to Amsterdam from Halifax via Toronto, and developed a really bad headache which went away after a very large protein packed breakfast with two huge mugs of tea. I blame dehydration and lack of edible food on plane and first day after arrival. Why do people think vegetarian means vegan and remove all the protein and flavour from a dish?

In my experience the best way to deal with pred headache is sufficient hydration and sleeping well, at least being comfortable.

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"Why do people think vegetarian means vegan"

Multi-tasking - gluten-free means low fat, low salt and expecting palatable food is a no-no. Though one place used non-spicy Indian food and it was wonderful! Different suppliers use different options...

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What does gluten free have to do with vegan? What am I missing?

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It was the rest of your comment I replied to - one meal to cover as many options as possible. If you are making a vegan meal it will obviously also "do" for the vegetarians. Just as gluten-free covers for a load of other demands re diet.

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Easiest option would be to not feed us at all. Once I got the vegan obstacle out of my way I've enjoyed the food in The Netherlands, although looking forward to stronger tea in the UK next week!

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Thanks HeronNS , yes I do try to keep drinking water as I think dehydration can be a cause of headaches. I used to suffer from menstrual migraines and I was so pleased when they ended and now I've started with these so just wondered what was triggering them. Seems I may be stuck with headaches!

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I recently dropped pred fro 9mg to 8mg and have had headache and nausea for 3 days wondering if it will ever go

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... "dehydration, lack of sleep, hunger, sleeping with my neck bent awkwardly, allergies in pollen season, lack of caffeine". Snap! I used to be able to go all day without eating, (not sensible, but possible) but now find I'm ravenous by 11.30 in the morning and if I don't eat enough the day before, this results in a blinding headache, which as you say, is usually relieved by eating and drinking. Steroids messing with metabolism, I suppose!

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The question is what type of headache for GCA. Ordinary peole get headaches, too.

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Only when there is something else wrong like what’s already been said, virus, poor posture, tension, eye strain. I wouldn’t have described my GCA pain as a headache because it felt like a burning on the surface of the head and temple rather than a headache which feels more inside.

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What a good descripton of a GCA headpain as describes mine exactly. I have reduced to 23.5 now and the tightness gets worse as my steroid day goes on. Relieved by the next dose. According to Consult I should be on the way to 10mg by now. Not going to be pleased when I see her in May.

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You need to allow your body to determine your reduction. Really no point ending up having to go back up to 25 due to cutting down too fast. Sometimes we have to listen to our bodies.

I am lucky as my rheumy seems to have given me the right reductions so far.

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I have GCA but never had headaches just a tender painful head along with jaw and vision problems.However as I am reducing pred following DSNS,now on 12/13mg I do get some headaches and have put it down to reducing,they are not severe and don't last very long.Are you reducing pred? Yes I get hot flushes too,thought I was over that many years ago!! I wish you well.

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Thanks lizzie47, yes I only suffered a little bit with hot flushes and thought I was lucky to escape quite lightly. Little did I know! I have been on 9 mg for a month now, having reduced from 15 mg over the last 3 months. I've followed instructions so far but have decided I'm going to do DSNS from now on, to be on the safe side. Hope all goes well for you.

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Oh I did forget to say that I do get headaches when I reduce. It is really predictable and for me is on about day 4. It lasts a day or two and feels like a normal headache. What’s more, Paracetamol works. With GCA it doesn’t.

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Thanks SnazzyD, I seem to be getting headaches a lot and I've been on 9 mg for a month now so can't be due to reducing. Paracetemol does help although doesn't get rid of them completely. It doesn't sound like GCA from what you describe but I will keep an eye out for any symptoms.

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Here are some questions. It is worth thinking hard about them so you can tell the doctor because the word ‘headache’ is very non-specific. How would you describe them? What type of pain is it, Sharp, dull, like a mist, like a pin? Does it throb? Does it stay put in one area? Does it move about or refer to somewhere else too like the neck? Do you feel dizzy with it or have any other symptoms at all? Time of day? Can you tell when you are about to get one before the pain hits? I’m sure there are more.

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Wow, that's a lot to think about! I'm going to start keeping a headache diary from now on. Thanks for the advice :)

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Great idea, and put in your activity and food and fluids to see if there’s a pattern too.

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Yes actually, every evening without fail and my head never feels clear, always a bit like it’s full of cotton wool. This is in my forehead. I used to get a more severe pain at the back of my head - not so much now.

I do not know what causes the headaches, but the hot flushes are definitely a Pred side effect, sometimes accompanied by sweating. The hot flushes disappeared almost completely when I got below 10 mgs.

I have got PMR diagnosed in March 2016, currently attempting to taper from 7 mgs to 6.5 mgs using the dead slow nearly stop method.

I wonder if my headache is fatigue/ eyestrain and the fact that I am far away from my Pred dose in hours. Do painkillers help? I think they take the edge off with me.

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Oh that's awful, having a headache every night. Mine tend to develop by midday but not every day. I think the hot flushes and headaches may be linked. I was hoping the hot flushes would go with the pred reduction but no luck yet. And yes, I have actual sweating too which I never had before. The back of my head feels like it's on fire sometimes!

I take paracetemol which as you say does take the edge off the pain. I've just rubbed tiger balm on my temples too which helps when I go to bed. I do have migraine tablets but only take those when I'm at work and need to concentrate.

And yes, fatigue could be a factor. Time for bed now I think!

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If you are talking about a burning sensation on your scalp, I have heard people with GCA describe their symptoms like that. Maybe run this past your GP and certainly be alert for eye symptoms or pain while chewing. It must be so hard to put in a day at work, distracting too I guess. I miss it sometimes.

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No I don't have a burning sensation as such, just when I'm having a hot flush.

I moan about having to go to work but yes, I'd probably miss it if I had nowhere to go. The main problem is sitting at a computer for 8 hours a day as it does bring on the stiffness. I do try to have a stretch and a walk whenever I can.

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Pred has affected my eyes in that the muscles don’t work properly to adjust for sight. The optician said that my glasses aren’t quite the right prescription any more but it changes by the day. Working at a fixed distance, especially screens causes massive eye strain for me. I gave up work at 54 last year and it was like having a limb cut off, but it has been the single most important thing I have done to heal myself. I still get days when I feel totally useless and without purpose but to have struggled through a working day, even a shorter one would have been detrimental. The problem with working is that you have to keep ignoring ones body’s cries for help. If I had had to work then the best I could have done was treat my free time as a health crisis time and act fully like an ill person just to recover for the next day.

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You really need to get away from the screen at least every hour. I have a legacy of cervical Spondylosis from bad posture at screens during my working life. Negotiate this minimal thing with your boss if you need to.

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I suffer 'GCA head' - not the same as a normal headache - mine is on the affected side only and is like having a heavy weight on my head and is very sore, sore eyes too, aching jaw/teeth so perhaps not a good example to follow but worth you knowing. I suffer withdrawals badly when reducing and for the past 18 months have not been able to get lower than 3mg pred and during this time the 'head' subsided.

Last month I had a flare following a procedure and upped to 4mg then 5mg pred to relieve the symptoms. I am now trying to reduce with little success, and the 'head' is back.

As SJ says keep vigilant with your headaches and if you start to get any type of visual disturbance see a Doctor as a matter of urgency. You don't say what pred dose your on for your PMR but definitely hot flushes are down to them, they will only subside as you get much lower - are you reducing? that will cause headache/fuzzy head for a short while.

So many questions to ask you but in the meantime keep well hydrated, I take paracetamol, doesn't take it off but helps to deaden the pain. I take it you didn't have headaches before getting PMR? As you will know there are many reasons for headaches and has already been mentioned by SnazzyD best to keep a diary to show your Doctor.

Best wishes

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Thanks for your reply. I've been on 9mg for the last month and I think probably from all the replies, the headaches are a side effect of the Pred so hoping they will reduce along with the Pred, fingers crossed!

I will take the sound advice of keeping a headache diary. I'm very grateful for everyone's descriptions of their GCA headaches as mine don't seem to fit these which is a relief for me.

Hope your reducing goes well and your head gets better.

Jackie

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Thanks Jackie, I agree it does help to compare symptoms and it's good you now feel more satisfied where you are. Hope you continue to improve.

Terri

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Hello I have had pmr for nearly 6 months, commenced 15mg of pred last November and responded well.

However started daily headaches and night sweats once I'd tappered down the pred from 7.5 to 5 mg end of January (probably too quick in lowering the dose, but it's part of the learning curve). Like you didn't think it was GCA as no other symptoms and ordinary over the counter analgesics were very effective, especially Naproxen.

Very fortunate have a good Gp and Rheumatologist. Both agreed that this was probably not GCA and both dismissed the link between the possibility of being steroid reduction related. For reassurance Rheumatologist arranged temporal scan and CT scan and both came back normal.

I Increased pred back to 7.5 and after a few weeks headaches disappeared! Interestingly pmr aches and pains have been almost non existent through out this whole period, apart from early morning neck discomfort. Unfortunately night sweats still continue.

Sometimes wonder if headaches have are being masked whilst on higher doses of pred which inadvertently may have been managing some sort of neck related/ headache.

GP wanted me to try Amitriptyline as thought headaches may have been tension /neuralgia related, tried it for a short while but experienced no benefits, he has also referred me to a headache clinic, this clinic has a 17 week waiting list so have decided to stay on waiting list in case headaches return

I am a registered Nurse employed in general practice and see many Pmr patients however never come across same symptoms, so I find your post very interesting and welcome others comments please

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Always have gotten prednisone headaches from day one. For three years now I have had headaches. Tramadol helps a bit. I also get tension headaches but I can tell the difference one starts in the neck where I carry my tension and the other is just plain prednisone headaches. Reducing does make the headache worse for a while. In my life headaches are here to stay.

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Good Morning,

I started having headaches about 2 months after starting on the Pred. Really bad headaches, which would wake me up around 4: am. Tried lots of stuff, nothing worked. Until I tried Hemp Oil (legal in the US). I take 15 drops at bedtime. Now, if I could only get my 13 year old labbie to stop waking me at 5 am (She is telling me to get up, let her out and feed her)...

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I read these posts with great interest because I now get headaches after not having them since menopause. I have tried to figure out what I do different on the days before I wake up with a headache but I just don’t know. I just wake up some days with a headache that almost makes me feel sick to my stomach. If I take some Tylenol and put an ice bag on the back of my neck for a while it goes away. Yes, and I never had hot flashes during menopause but I do get them now. I’ve just learned to live with that.

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Dear jacdo

Before I was diagnosed with GCA I suffered for 17-years with Migraines and was treated with Sumatripton one per episode, which averaged 4 episodes each month. Once I was given the all conquering Prednisolone, the migraines dwindled and I had none in 2014. Result!

Its probably just me because I'm having Testosterone Replacement Therapy as well every 28-days and that might have contributed. I still get the occasional headache but only GCA ones across my forehead.

I hope you get better soon

Regards

Colin

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Thank you for your reply Colin.

I have used sumatripton too for migraines but hadn't had to take any for months until recently when these headaches kicked in. Luckily, 9 times out of 10 the tablets do get rid of them. I try to only use them when I have to, otherwise I just stick to paracetemol which helps take the edge off the pain.

Thanks again and here's hoping we can beat the headaches!

Jackie.

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Hi Jacdo, yes, headaches were a part of my early pmr experience.

I was a life-long migraine sufferer, till menopause. 🤪 (nearly 20 years ago). After meno, I lived headache free till PMR, in 2013.

My early prednisone dose was 20 mg, tapering to 15mg, then tapering lower over time.

The headaches commenced during my early days with pmr.

They were NOT migraines, but annoying, nonetheless.

I had a headache every day, about 10 am. It was predictable, and I began calling them my Pred headaches. Each lasted 1-2 hours, and did respond to tylenol/paracetamol .

As I tapered below 8 mg, they stopped, and I seldom have a headache any more.

There are many aggravating little surprises with PMR . Everyone has their own, and I hope yours are few.

Kind regards, Jerri

***Diagnosed with PMR in Oct, 2013, currently using 7 mg pred, following a stress- induced flare in March 2018.

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Thanks for your reply Jerri

That sounds like my experience with migraines. It seems that headaches do appear to be a side effect of the Pred so hopefully they will start to ease off as I reduce down.

Very interesting to hear all the different experiences from everyone.

Thanks again

Jackie

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Dear Jackie

It's uncanny we get talking about headaches and guess what along comes a flare because I've reduced from 7 mgs of Pred down to 6.5 mgs. Been at 6.5 since 27/04/18. I'm reducing my pain relief Paracetamol 8 x 500mgs at the same time as requested by Acupuncturist and the pains in my forehead, eye socket, sinuses and upper jaw kicked in on 01/05/18. I was due for my second Denosumab on 01/05/18 but it got missed through an oversight, I'm having it tomorrow night 09/05/18. Pain in forehead was getting worse so I spoke to GP at Framfield today and he agreed to my raising Pred to 7.5 mgs until next test on 22/05/18. I have it tested every 28-days with Liver Function test another unexplained area no one is sure what is going on. Gastroenterology tomorrow when Heath Road will tell me what is happening.

I hope you are improving and enjoying this glorious weather

Colin

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