I was diagnosed with PMR just over 2 yrs ago. Based in NW England. So far, it has been a bit of a bumpy ride with tapering and symptoms. I am currently on 10mg. I have had a few minor flares that have been managed by upping my pred dose. I have changed Rheumy as my local, first one was not a pleasant guy to deal with and my wonderful GP suggested a second opinion so I am now under a brilliant Rheumy in Leeds. Unfortunately seeing her is a 2.5 hour journey away. I have had jaw ache but no claudation, sore teeth and “face aches” on and off for over a year. I have also had something similar to tension headaches on and off. These tension headaches have slowly got worse. When I was with my Rheumy last month she arranged an ultrasound on my occipital and temporal arteries, along with a look under my right arm to check the artery there as I was having aches in my arm when sitting in certain positions. I had the scan 4 weeks ago and it was normal and didn’t show any halos etc. Since then my headaches have really increased. I also had covid the week after my ultrasound - just to muddy the waters! I am guilty of really clenching my face and jaw, suffer with anxiety since taking pred and along with getting over covid, I have tried to put it all down to that. The headaches are like a sharp, insistent tightening at the side, top and back of my head - not in the temporal areas. They build as the day goes on but I do not get them at night or wake up with them. Yesterday I finally plucked up the courage to call the GP and explain what has been going on. It was a new GP - he got me into the surgery, listened carefully, and was really great. He suffers with RA so was really knowledgeable about pred etc and very sympathetic. He suggested that my headaches were probably tension related and not GCA. I left feeling relieved. Then yesterday evening the headaches got much worse and I began to feel nauseous. I went to bed lat night feeling really rubbish and have woken this morning without the headaches so far - I just feel a bit punch drunk. I am going on a family holiday tomorrow night and obviously don’t want to end up in A&E abroad having had some kind of GCA scare or worse. My hubby is not in the least bit sympathetic, refuses to acknowledge that I have PMR and is furious with me this morning for suggesting that I might need to go to hospital to get checked out.
So that is the question…. Do I go to A&E myself and get checked out or do I accept the ultrasound results and the GP advice and put up with the headaches as they are just tension related??
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Burroughs123
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Do you have a BP cuff at home? That is something you can check without difficulty.
What you are describing isn't really typical of GCA - I think the headaches are more likely to be unrelenting and what you describe would fit with tension headaches far better. A&E isn't really the place to be either I don't think - you do risk VERY long waiting times apart from anything else and if it is tension it might well make it worse rather than better. Not to mention what it might do to you relationship with your husband!
Few EDs will have access to the tests at the weekend, they don't have rheumatologists on duty so will won't see one and you have already had the u/s which isn't available at all in many hospitals. Sarah Mackie's department does and she uses it but I don't think you would get it from her at the weekend either.
Where are you heading for on holiday? I must say - watching UK news I think I'm rather glad I'm staying at home! Since flying to the UK for a visit is very impractical for me, I wonder how long I will have to wait for Calais-Dover to be a reasonable option again ...
On gosh what a worry before holiday! No doubt that will be making it worse. I’ve had many aGCA scare while recovering from GCA all down to the sternokleidomastoid muscles. From my experience and that of others is that GCA headaches tend to be around at night and early morning before it becomes constant. Sounds like your neck is getting some blessed relief when you take your head’s weight off it. Then as the day goes on the neck becomes battle weary. It’s worth always keeping on top of your sternokleidomastoid muscle health whatever the situation. Try these sites
I still get teeth pain from steroid induced dentine hypersensitivity when a whole row will just go into agony mode for a few minutes if I eat something warm. If you clench your teeth that can set up all sorts of issues in the head.
Sorry to hear your husband doesn’t t get it. At what point does he shut down?
I don’t think A&E is good place to go unless you’re in dire straits and I mean not just worried about your holiday. For one they will see a good work up so far on your notes and your doc’s thoughts sound feasible and you may be given short shrift. I guess they could get you seen by a neurologist but beyond that I’m not sure they have anything more at their disposal. X-ray possibly but not sure what of but I’m not a doctor. What pain killers work, even if for a short time?
Sorry to hear you are going through this…..particularly with OH.
We would always say please get headaches checked out, and although you have, it seems that your are not entirely happy with the replies…understandably.
I think YOU have make the decision…..
1. either go to A&E today, be prepared for a long and tiring wait, but be satisfied you have done so, or
2. try and forget about things and go on holiday - but will you be relaxed and enjoy it, or just be worried all the time? And are you flying? Not a good idea with headaches perhaps.
But have to say, don’t sound very GCA ish, but still unsettling.
Thank you so so much for you super quick responses. It is really appreciated. Your replies have helped me think a bit straighter and so I am going to wait it out and not go to A&E. I have tried paracetamol over the last few weeks with mixed results but I’ll keep going with them. Yes, we are flying. I will try and think calm thoughts and see how things go… thanks again.
By that, I mean that wearing my glasses can bring on the headaches or make them worse. The GP checked where my glasses sit and they are not pressuring anywhere on my head as they are pretty loose. The only pressure point is where they rest on the top of my ears. I have had a little earache that comes and goes but nothing too remarkable.
Far more likely to be your prescripion not being quite right and you are straining to focus.
Many of us have found pred caused problems and some of us found moving our specs up and down our noses helped! It's probably as much due to fluid retention as anything else but you should also get your eye pressures checked regularly (at first at least) when on pred. The eye people here tell me it either happens or it doesn't - so if it doesn't happen in the first couple of years it probably won't.
I have just tried a pretty old pair of specs (distance as I'm shortsighted) and find I can see much more comfortably despite the eye specialist saying my prescription in the more current pair is fine. I'm also not happy about my computer specs, I read without glasses. It can happen any time - and vary from day to day, hence the "try moving your specs up and down your nose!"
I have had a very thorough eye exam (inc pressure) every 6-8 months since diagnosis with an optometrist and I also had a good “going over”(!) with an ophthalmologist last August who diagnosed blepharitis (which apparently is a pretty common occurance for pred users and menopausal women) so I use daily drops. I do regularly change the sitting position of my glasses when wearing them. Up until the headaches started 4 weeks ago, I was wearing them with no issues at all.
I was so ready to positively embrace my 50’s but so far it hasn’t gone to plan!
It isnt the position that is the problem - it is whether the lenses are focussing what you are looking at ideally. And I emphasise, it can change from day to day or even during the day. Your brain will work hard to make sense of the signals it is receiving - and it can cause a headache of the sort you describe.
I got a new pair of glasses many years ago where the technician had the central spot of one lens a fraction of a mm out of position - nothing wrong with the prescripion, by cutting them to fit a smaller frame and getting it in the right posiition they were perfect. Same happened to my daughter - the optician wouldn't consider there was a problem but my optician confirmed my suspicion. It can also happen if the frame is even the slightest bit out of allignment.
And another thing that may be doing it - and you can try this out immediately - is dry eye, It is common with both pred and PMR (either or both) and it tends to get worse when you are working on a screen or reading because you "forget" to blink as much and the surface of your eye dries and that can also affect focussing.
You can get eye drops - I use a liposomal spray that you use on the outside of your closed eyes and that makes it much more comfortable.
Yes - thank you - I have HYLO DUAL lubricating drops with ectoin for my blepharitis (which came on a year ago and was attributrdto PMR, pred and menopause!) and I can be a bit slap dash about remembering to use them!
I have had trouble with my eyesight changing due to glasses I have had to go back to my previous glasses which I can see perfectly when I put on my newest pair everything is blurred my eye doc/consultant said it is tapering down with the steroids as well. Hope this may help you to not worry so much and have a great holiday. Also my thing told me it is also osteoarthritis in my neck that gives me pain in the top of my head and forehead.
I found that Pred kept monkeying about with my focus, especially my ability to change from one distance to another. My optician said that Pred can do that and it would change with dose. Sure enough, the goalposts kept changing and I could never keep up and rely on my focusing to be reliable from one day to the next. As my dose got to very low numbers, it lessened this issue.
The following will sound a bit off the wall.................extract from Tips and Tricks from Patients.
f)
When you get discomfort/pain in your scalp, spread your fingers through your hair and gently tug. Do this all over, bit like Shiastsu.
Every hair on your body has a muscle attached to it. So they can need relaxing. Think how sometimes the hairs on your arm stand up.
Each individual hair has a muscle attached to it, those muscles can ache. The simple action of running your fingers upwards and gently tugging can relieve some scalp pain.
I am probably stating the obvious, but do take a copy of your recent medical history/prescription and rheumy contact details with you as well as your medication of course. Going abroad seems to be much more stressful in the lead up, but hopefully, once there and you relax a bit the headaches will ease.
I don't think it is going to be much better where we are going either! We spent 5 days in the rain and chilly winds at the beginning of January in Dubai and I have a feeling that this trip isn't going to be warm and sun-filled either. Never mind. It's a much needed change of scenery.
Thanks - yes I have it all ready - and I have attempted to do a printed out translation in Spanish too... God only knows whether it'll make any sense to anyone!
You will find lots of well written Spanish info on US sites as they often publish in both languages - usually a box to change language somewhere towards the top right.
Google translate has improved a lot in recent years. Linguee is also very good. The grammar on google sometimes needs tweaking but grammar isn't the be-all and end-all in most languages
I have to say, despite what the experts above have said, that my headaches sound similar to yours and GCA diagnosed. All at the back and sides of my head, worse on pressure, as in resting my head against a cushion or pillow. However I did wake up with it and it got better during the day as long as I didn't rest against a cushion. It felt like a tension headache. GP thought GCA and referred me for urgent assessment. They too thought GCA and put me on 40mg pred with an instant result. A temporal biopsy a week later was negative. So maybe take some extra pred with you just in case, after all, that's what the medics will prescribe.
Thank you for your reply. It isn’t when I rest my head on anything and I haven’t been waking up with it. I am taking extra pred with me as a just in case.
Good morning l also have the type of headaches you describe and have been told by my Rheumatologist that they are not GCA type headaches. It's unpleasant and scary. I have noticed that l get very tense in my shoulders and face. I think this is responsible for a lot of my headaches. It's alarming and frightening as you can't tell if it's a flare up or not until the next blood test. It drives me nuts at times which doesn't help. I have been sent to A & E twice by my doctor who l think didn't want to deal with the issues l was having so dumped it elsewhere. The second time it was very very stressful as it was so busy and it seemed that they just wanted to refer me too my rheumatologist. They did blood tests and other checks. Which were inconclusive but ok to discharge me. Rheumatologist was then cross because he felt it should have been dealt with at the surgery. Which the doctors. A & E also mentioned. Can't win can you. I would however say that if l was going abroad and concerned l would go to A & E for reassurance. Sorry you husband is not understanding.
It is very confusing at times and all the ups and downs are quite depressing. I just keep going as best l can but the weirdness of the side effects can really drag you down at times. I have to very careful not to focus on every ache and pain l get and think it's a vasculitis flare up. The steroids are wonderful but have a lot to answer for.
You poor dear...Maybe PMRpro is onto something with checking your BP? An increased BP can cause headaches!Now you have Covid on top of it? Well, I can not advise regarding A & E as I am in the USA so sorry.
I had Covid also (in March). I was told Covid can be a different experience for everyone too. How long have you been on 10mgs of Pred? I had to double the normal dose of steroids for 5 days when diagnosed with Covid.
You are having cluster headaches or Migraine. You can have them without Aura. I would try to take a relaxation class to help with the tension. I used to do the same as you when my husband passed away and never had a bad headache before, then I got lots of them all the time to the point of throwing up. I got medication for them and there kept in check now. I hope your doctor gets it sorted soon.
I didn’t increase my 10mg dose whilst I had covid as I wasn’t struck too badly, thank goodness. I was offered extra meds or an infusion but didn’t feel that I needed it. I have been out of isolation for a week and other than the continuing headaches, I’m feeling ok. Thank you for your suggestion of migraines or cluster headaches. I have had migraines (the aura ones) on and off since I was in my 20’s. I shall certainly ask my GP or Rheumy if they are a possible cause.
The holiday got cancelled… hubby and eldest daughter tested positive this morning so we aren’t going anywhere! Going to see how I feel tomorrow and take a view on what to think/do next after that. I had a good, almost headache free day yesterday. The first in weeks. Today has been mixed.
Hi. I am sorry you are feeling so rubbish and unsupported. My husband has had PMR for 12 years. He started on fairly high steroids and now down to 4 mg permanently. He is in great health and even started back at the gym. We dread the day a doctor starts the old chestnut "we need to review". If he ever came off them he would be a shrivelled bed ridden man like beginning. He has had 2 episodes of those headaches. They start at top and down forehead towards eye. One caused burst blood vessels in an eye. The 2nd episode we were ready and he took extra pred for 3 days. I fear that a stroke or blindness will occur.please insist with your Dr that this must be a serious consideration.
I get these temple striking pains with sore teeth and jaw pain but my drs refuse to give me preds. So it's very very scary.
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