Can somone please tell me if it is normal to have a constant headache? I mean really constant?
For weeks now its just always there. Some days worse than others. I go to sleep with it. Wake up God knows how many times in the night and its there. Same in the morning and all day.
If you have PMR there is a chance of you getting GCA . also high doses of prednisolone can cause a headache. You need to see your GP
Bowler is right - NO it is NOT normal to have a constant headache and you need to bring it to your doctor's attention.
For us to offer more suggestions you need to give a lot more info: where exactly, what sort of headache, any other symptoms/problems.
Hello Jacqueline
As you have been diagnosed with PMR and GCA, you should have been started on a steroid dose somewhere between 40 and 60mgs, and this should have given you almost immediate relief in your head pain. My head pain disappeared as if by magic on 40mgs. As you are still suffering from headache, then you may need a higher dose to control the inflammation that is causing the pain. You need to get an immediate appointment with your rheumatologist or, in the case of any problems with your eyesight, such as blurred vision, pain or any momentary loss of vision, go to the nearest A&E. Good luck and do let us know how you get on.
I agree with Bowler on this. After my diagnosis and having the high steroid dosages, twice, I developed a bad headache. I went to the ER, because I didn't know if it was a flare. The doctors were not sure. My eyes were ok, but I had heart symptoms, and at this point, the artery dissections were discovered. They theorized that I had a combination headache, migraine and some of the GCA symptoms were present. At first they tried to give me the 60 mgs of medrol again, but I refused. They gave me 20mgs. When I was discharged, they suggested reducing slowly back down to 5mg. I saw a neurologist who specialized in migraines and she put together medications which dealt with the migraine and helped the side effects of prednisone. I have been using that since and have not had another very bad headache. Would definitely see your doctor. The high dosages of prednisone may be contributing to your headache. I hope you feel better. wishing you good health. all my best, Whitlesey
PLEASE seek medical advice... I had GCA appear 10 years after 1st diagnosis of PMR. Doctor thought it might be a cluster headache, but, a diagnostic hit of 40mg of pred instantly stopped the pain. Be safe rather than sorry.
Hope you get help soon.
Jcqln1505
You have been given good advice. I would follow it up.
You can try this as well.
Each hair on your body has a little muscle attached and can and do go into spasms, more so with PMR. Spread your fingers through your hair and gently tug, do this all over your scalp. This can release the tension and the headache. Bit like Shiatsu hair washes.
Thank you everyone.. Being new to this I am putting everything down to worry.. stress and all the tablets.. Will ring GP tomorrow and def try the hair tugs.. Thank you all xx
Hi Jaqueline,
I have to say at the outset that I don't have a definitive diagnosis but was treated as if I had PMR/GCA for a while.
I too have had constant headaches for the past 10 months along with facial pain, arthralgia, myalgia, fatigue, weight loss, blurry vision and anemia. My headaches didn't settle with high dose oral or IV prednisolone, nor do they respond to conventional analgesia, I am 48yrs old.
My inflamatory markers have only ever been moderately raised, I still don't have a definitive diagnosis but now the feeling is its probably some kind of auto immune connective tissue disease as my complement is low.
The reason I have posted is that it would appear that headache is a very common vasculitic and connective tissue symptom and difficult to get rid of until the right treatment is found.
As Celtic has said the right dose of steroid should get rid of a GCA associated headache, if it doesn't then maybe an alternative dagnosis should be considered.
My symptoms settle most of the week now with high dose MTX, but recurr as it wears off, I am still on pred as well.
You have my sympathies as I know how wearing a constant headache is. I echo everyone's advice to see your GP and I hope that your symptoms settle soon.
Best wishes
Keyes
Hi everyone, another headache story.
First story
I posted on here recently about estrogen pessaries, and maybe they were the cause of my flare of GCA ? since then I have been on 40mgs pred. and just reduced yesterday to 37.5 mgs. [ I'm convinced it was the pessaries that caused the flare ] the headaches started to get better once on the 40mgs of Pred. and stopping the pessaries.
Second story
However another set back last night/ today with an horendous headache, and I mean horendous, worse than my GCA !!!!!
On Friday I was called by my surgery to say I had yet another UTI [ I have stage 3 kidney disease, with one kidney smaller than the other, so I get frequent urine infections ]
I collected my prescription of antibiotics, [ Trimethropim] and started them straight away.
In the early hours of this morning, and in a lot of pain, I put 2 and 2 together, and thought " it must be the Trimethoprim" as I had stopped the estrogen pessaries. I looked at the info on the pack, and low and behold it states headaches as a side effect of the Trimeothropim. [ I only had 3 ] I have not taken any today, and my head is getting better. So another set back for me, and again I'm convinced, like the estrogen, these antibiotics were agravating my GCA.
I'm hoping I wont have to go back up to 40 mgs again. I will see how I go.
It's a catch 22 isn't it ? I must have the antibionics because of my kidney's, but not good for my GCA. I will have to ask the Dr. for a different antibiotic, but dreading the thought of more headaches
Thank God for this site to share my problems with.
I am sorry you are in constant pain as we all know it just wears you down.After I was diagnosed with Temporal Arteritis and GCA I was sent to a specialist clinic .The consultant asked if I was in pain I said it came and went. His advice was if I had a headache that lasted 15minutes I should phone the hospital help line. I am fortunate that I have a help line number but would suggest if you have a Rheumy you phone the hospital and ask if someone can speak to you about it . Hope this helps Take Care
Hi Jacqin 1505.
I was diagnosed with GCA three and a half years ago, and I had head pain, scalp tenderness and occasional jaw pain. My inflammatory markers were high and despite 60mgs. Prednisolone, gradually reduced over this period of time and taking Methotrexate weekly, now discontinued, I have always had the head pain. My inflammatory markers are now normal but I never have relief from the head pain and scalp tenderness. The pain is worse at night and I need to sleep sitting up supported by pillows. If my head is in contact with the pillow it causes pain. It never goes away, but I would not describe it as an headache. I occasionally get an headache, which is definitely different from my usual head pain. Perhaps you could try sitting up to sleep - eventually you would get used to it, but I long to be able to lie flat. My Rheumatologist does not think I can have head pain when the inflammatory markers are normal. However, I live with it every day and night.
All good wishes.
Tomasina x
I've never been completely free of the head/scalp pains in all these years. Have had to compromise with sleeping though as I can't sleep sitting up, I have to be lying flat i.e. head in a straight line with my spine. If I sleep in any other position I wake with horrendous pain in neck and shoulders.
I am used to sleeping practically face-down, but I have now got a very small pillow which I can wedge between neck and bed so that only the edge of my head is on the pillow (does that make sense?) and at long last I can sleep on either side! It's just a bit of a business if I want to turn over, but I can't have everything, can I?
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