Does anyone get a pulsating sensation in their head on prednisone? I keep getting like my heartbeat really loud thumping in my head , sometimes it causes a headache but not always, yesterday I was just sitting and it started, I got dots all over my eyes then most mornings and evenings it starts.
Thanks
Wendy xx
Hello, I got the head pulsing on Pred but normally on higher doses than 10mg. The spots in your eyesight needs to be looked at because they can be caused by various things, some just annoying and some, including bu not solely GCA, that need attention.
I had blood tests as I was getting pain in temples also and blurred vision which I’m still getting, worst with headaches but nobody from rheumatology came back to me about bloods so I’m assuming they are ok.
I would advise you to never assume after so many incompetencies from some of my heath carers. Such as missed Avascular necrosis on X-ray, missed severe sinus infection on MRI, a prescription written from my rheumatologist for a med I am allergic too. I could go on but suffice it to say I recommend you get a copy of any tests you have done . Also blood tests are just one tool in diagnosis of PMR and GCA. Good luck cxx
Thank you, yes I’ve had a lot of misdiagnosis over the years until I’ve ended up at this point. Says a lot when my own Gp admits he didn’t think I’d make it!
Thank you, I have Serositis and still awaiting cause, although on blood test for PMR was put down now things have changed, I’m staying in 10 mg of prednisone but I’m going to be starting immune suppressants so until I see rheumatologist again in June everything is guess work now, I have had for over a year pleural/pericardial effusion bilateral exudate, I also get painful wrist and pain across the tops of my ankles with ankle and wrist swelling. My spine is terrible excruciating nighttime pain so referred back to spinal team.
I’m ANA negative but was high inflammation markers until I started steroids.
Wendy xx
Very best wishes. You have a lot of things to juggle.
Oh yes, I think years of being left has finally caught up.
nationalheadacheinstitute.c...
If you are getting visual symptoms too, I would be looking for medical advice. It may be occular migraine but it could be something else - you say "keep getting" but not how often. Daily, weekly, monthly?
And please - the title is supposed to give an idea of the post content. "Headaches", "throbbing headache" would have been far more appropriate.
Daily since I dropped to 15 mg I’m now on 10 . I reported it to rheumatology nurses and they asked for bloods but I haven’t heard anything and it’s been days so I’m assuming bloods were fine so must be something else.
Thanks
Wendy xx
As 123-go suggests, use the MECS/CUES service which is equivalent to an ED for eyes but operated by a local optician
primaryeyecare.co.uk/servic...
The site has a Find a Practice page - find your nearest and phone them
primaryeyecare.co.uk/find-a...
Do you think I should go as I thought I was ok considering nothing must have shown in bloods with them not getting back to me, I’m scared of wasting peoples time. I had a recent eye check as I have been getting blurry vision and he put it down to extreme dry eyes and issued drops and gels on repeat.
Blood tests don't show everything - they were probably just looking for raised inflammatory markers. If you have floaters that you didn't have before - it needs to be looked at. Without people "wasting their time" they'd not get paid or serious illness be diagnosed.
I’ll contact my GP tomorrow and tell them it’s happening daily. I’m using the drops and gel, nothing touches the pain I just have to wait till it eases off , there’s no warning it just comes but only since I’ve been on steroids. Could steroids be the trigger or cause?
You may be able to see the CUES service sooner than you can speak to the GP and they can do all the tests the ED would do, more than most EDs in fact. GPs can't examine anything properly. It is possible there is an optician who can see you today - ask. They can only say no.
Ok I will have a look and thank you
Just called specsavers who I use and because I had a test and scan a month ago they have signposted me to GP because my pain isn’t coming from eyes so I’ll have to wait to see if I can get an appointment which I doubt tomorrow.
Wendy xx
You did mention the floaters?
Dots in my eyes yes
‘No’ to question about pulsing sensation but I do agree with Snazzy that the spots in vision must be investigated. I strongly advise you to make an appointment with an optician as soon as possible and ask for an OCT scan which gives a detailed assessment of your eye health. There is a small cost for this but well worth peace of mind.
It does come up quite regularly - and you have had replies from others, but had you entitled your post with the actual subject rather than just "Question" you would have got related posts.
Sorry I didn’t realise, I’m new to all of this
No probs...maybe have a look at this for info on forum -
I have also had the pulsing sensation after 4 years of pred and it turned out to be high blood pressure caused by pred. The veins were pulsating & I could feel it especially in my neck. Our neighbour is a nurse and came and took my blood pressure one day when I was feeling it and it was 185-130 He ( my neighbour) sent me to hospital after 2/ 3 days of similar high readings. Its now come down as I taper and I am reducing the blood pressure meds alongside but it means I am now under a cardiologist as well as a rheumatologist. Ha sanyone taken your blood pressure at all? I know my Rheumatologist never does.
I have low blood pressure as a rule , so shouldn’t make much difference. I’m ringing doctors now but doubt I’ll get an appointment, who knows I might get lucky.
Yes as did I before Prednisone
I checked BP this morning and it’s still low so definitely not that, thanks anyway for bringing that to my attention.
Well, it's interesting isn't it.Prednisone, especially at high doses can have multiple nasty side effects on some folks.
I wad pretty unlucky 😕 I think I got them all!!!
I often got this very disconcerting noise like tyres crunching on gravel between my ears, often at night, which prevented sleep. But it could come on in the day at any time.
Fortunately things do seem to improve once your Prednisone dose decreases.
I hope your health does improve soon.
All the best 👍
Thank you, my Gp thinks it’s just the recent drops in prednisone that’s causing it but he doesn’t want to put me back up again, he’s hoping it will stabilise.
Thank you
Wendy xx
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