Can we try to sleuth this headache out together?

[Blurry62]

I wake up headache free in the morning. Eat my breakfast at 8:00 and take my prednisone.....4:00 ish my head pain starts to creep in. Too much prednisone? Not enough? Went the rhythm? Thank you in advance for your excellent input!

[SnazzyD]

Perhaps it’s postural as by 4pm you’ve been upright for a bit and problems have had a chance to develop. Going to be allows the neck and head to settle so you feel better in the morning.

[GOOD_GRIEF]

Hmmmm....

Maybe trying a split does would help?

[fmkkm]

Yes, splitting your dose might help. I did that in the beginning. Also, as the day wears on your body just gets tired and the inflammation creeps back. That’s your clue to take a soak in Epsom salts and put your pajamas on. I am three years in and I am worthless after 6pm.

Hope you feel better soon.

fm

[Blurry62 in reply to fmkkm]

March 19

My gp increased my dose to 20mg.

This was my first day for that and I actually did save 2mg to take at dinner. It's helped by now. Headaches is 90 percent gone.

[bunnymom in reply to fmkkm]

I only make it till 7:15 and I'm even retired! Going somewhere for an evening out uses up the next day's energy.

[fmkkm]

When did you say your appointment with the specialist is? I hope you get some relief after you see them!

[Blearyeyed]

Perhaps as others say splitting the dose may help but ask your doctor's opinion first before you make your decision.

Unfortunately , until you get to discuss the type of headaches , where they originate , the type of pain and when in a day they get worse with a specialist there won't be a definite answer.

Further tests may be required to eliminate different causes for the headpain.

Not all of the headpain may be caused by PMR or GCA , PMR or the reduction of steroids in your system may be making other headaches worse or causing side effects , but other changes in your body or other medications could do this too .

I know that many people , including myself , suffer increases in pain at different times in a day for no apparent reason , with no particular triggers , and even before beginning medication. This can happen with many illnesses including PMR or GCA but also with heart , kidney , thyroid , hormone and adrenal issues.

One reason that certain doctors consider is that an increase in symptoms can be caused by the changes of naturally occurring hormones , enzymes and pressure changes in the body.

Most people who suffer with these unexplained pain , BP , heart rate or temperature changes do find that they follow the body's natural rythmn and often occur mid afternoon or wake us up in the early hours of the morning.

Write a headache/ pain diary if you haven't already started one to take to your appointment and show the specialist .

Tell them if these headaches cause any other symptoms like visual disturbances or palpitations , tinnitus or increases in pain in other parts of the body.

Write down how long any new pain lasts and where it is located on the head.

If it stabbing , or throbbing .

State exactly what part of the head they hit. Use a diagram if you need to.

If you have any other symptoms that you have experienced with headaches recently but not during your diary tell the specialist these too.

EG: going to the toilet more or less , twitching , numbness , sweating .

All of this information will help the specialist establish what is causing your headaches and which tests are required to rule out any other types of illness or deficiency that could be making your headaches worse apart from PMR/ GCA.

In the meantime , taking the opportunity to rest in a relaxing space before the time you feel the headaches begin , taking a recommended dose of standard painkillers ( like paracetamol) just before they begin to be able to record if this will help. Reducing screen time and other triggers .

Putting something cooling ( a cream or oil containing menthol) on the temples , behind the ears and down the neck may give some relief .

Using a neck pillow to rest your head inside on your pillow helps as it allows extra support round your head which helps your muscles relax.

Working out which position you get more relief in while you sleep can reduce the headaches you have , some headaches can be aggravated by your position in bed.

Hope you get answers soon , I understand your frustration and the pain , the waiting is the worst with this sort of illness. Bee xx

[Blurry62 in reply to Blearyeyed]

Thank you for the wealth of information. I will start a diary. Why didn't this occur to me over the course of this last year? Should have done it...

[Blearyeyed in reply to Blurry62]

Realistically the doctor should have told you to , but they hardly ever do , and sometimes they can be a bit huffy if you give them informed information and details , but that bad doctors and poor practise not bad patients xxx

[BeansHB in reply to Blearyeyed]

What a great wealth of information! Though I'm not experiencing headaches, I found the information valuable.

[Telian]

Could be many reasons and without knowing your dose etc hard to say, have you recently reduced as could be withdrawals! Discuss with your GP/Rheumy.

[SheffieldJane]

I wonder if you are tired Blurry62?

I find that I need a small snack at about 3 pm then a lie down at about 4 pm. I take my Pred at about the same time as you. I sometimes sleep for as much as 90 minutes. I find that this gives me an evening when the family return.

[Blurry62 in reply to SheffieldJane]

Ya know, I do get tired by three or four. Husband observed that I don't anticipate fatigue. I keep pushing through the day until I've a wall. I hate this gca! There's so much to do! My house is dirty, tasks always Partially done, I want to finish my education, and want these blooming headaches to go away!

[SheffieldJane in reply to Blurry62]

I know! It is so frustrating, but you have a serious systemic illness and the priority must be to take care of yourself properly. Everybody’s house is filthy deep down. I live in my old Victorian house with a colony of spiders, who just replace their webs as soon as I have whacked a feather duster round. The 50’s housewife is dead, may she rest in peace. The education probably gets to you more, what are you in the midst of?

[Blurry62 in reply to SheffieldJane]

Physical therapy assistant. I have one more year to go. The director gave me a medical deferment last term because she saw I was sick. Bloated up on prednisone and barely moving. I don't know if they'd offer me another. I don't have it in me to successfully complete it right now. I know you're right...everything you said.... Yes..... Ive always been very energetic... Blessed with health and vigor for 62 years of age. Honestly, I ran circles around the 18-20s students at college. Then this GCA took me out!!!! Now I feel 80..... I admit, I am not handling it courageously right now.

[SheffieldJane in reply to Blurry62]

Bless you! You’ll get there. Put yourself to bed at a regular time each afternoon, whether you want to or not. It really helps x

You will be an amazing physical therapist with so much empathy,

[PMRpro Ambassador in reply to Blurry62]

If you try resting BEFORE you would hit the wall you will very likely find that you then get far more useful time out of the day. That is the whole point of the pacing we keep banging on about:

healthunlocked.com/pmrgcauk......

[Blurry62 in reply to PMRpro]

I hear you.....

[Janstr]

Are you drinking enough throughout the day?

And do you eat lunch?

[GCA1947 in reply to Janstr]

Dear Janstr

Thank you for reminding me that I should be drinking more liquid. I've just had my pain relief changed after three years of paracetamol because it wasn't coping with an additional pain. I just have G.C.A. (C.R.P. 51 on 05/02/19, Pred. at 6 mg) but additionally a fractured spine bone with surrounding pain, reactivated osteoporosis, cervical spondylosis and now Cellulites’ has broken out on my lower left leg, ankle and foot and the left big toe has developed an ulcer and has a 2 mm deep hole leading into the toe. The bone is visible to the Practice Nurses naked eyes and I'm having the below knee leg veins mapped by ultrasound scan on 11/02/19. New pain relief is Co-codomol and the conversion of the codeine into morphine by the liver is a wow for easing my pain. After three years of not very efficient Paracetamol, the addition of the small amount of codeine, in the tablet is a revelation.

Regards

Colin

[Janstr in reply to GCA1947]

What a terrible time you are having.

When were you diagnosed with GCA & what dose of pred were you initially on?

The increased CRP level could be due to your toe infection.

[GCA1947 in reply to Janstr]

Dear Janstr

Diagnosed 27/01/14 initial dose 60 mg, though I should say that the headache that preceded diagnosis started on 23/12/2013, lasting for 35-days.

This is the second time my C.R.P. has been raised 8-weeks ago it was 49. I have my inflammation tested every 4-weeks and I always copy the result to my Rheumatologist . He blames being on steroids for increasing my risk of this sort of infection, luckily this is the first infection I have suffered in five years of G. C. A.

Zoledronic Acid gave me 24-hours of Amnesia and an awful cold/fever, sneezes etc. It is known to have 130 or so side effects and I had 10. Now I'm having Denosumab every six months.

Other than the fearful pain in my big toe and the leg swelling as I can't get my elastic stocking on, I'm not doing too badly. I have varicose veins as well and had the main vein stripped out in 2009. I had Ultrasound scan this morning (11/02/19) and the technician said she couldn't find the blocked vein in my left calf diagnosed in previous scan on 19/07/2017. The water has definitely helped in other areas as well.

Regards

Colin

[Blurry62 in reply to Janstr]

I drink water all day long. Two quarts easily. I'm juicing organic fruit and vegetables and eating clean. Anti inflammatory, Low gluten, no dairy, basically vegan who eats chicken.

[Jackoh]

Can’t remember Blurry62 if you have GCA ? In which case they advise not to split the dose. I have GCA/PMR and often don’t feel so well around the same time for a couple of hours. Don’t know why!!

[Blurry62 in reply to Jackoh]

Interesting! Yes. I have GCA

[survivalist]

I have more or less exactly the same issues at a later time in the day for me its well after 4m but I take my Prednisolone uncoated at 2:30 to 3:30 am each day with a pot of live yogurt. I assume with me its the Pred levels going down. I have worked out I dont maintain Pred in my body for as long as some other people but I still fear the dreaded GCA is coming. Its not throbbing or a serious headache but any funny feeling in my head now makes me paranoid !

[alvertta in reply to survivalist]

Me too!! And for good reason.

[Blurry62 in reply to survivalist]

Thanks for sharing! We have good reason to be paranoid I think....we have to be ever watchful.

[Lanakay]

I am seeing a chiropractor because of headaches. It’s down to twice a week now. I am waking up at about 4 in the morning with a headache. I’m sure I’m not supposed to take Alleve but I do and I put ice on the back of my neck. After I’m up and moving around the headache goes away but I don’t reAlly want to get up at 4 in the morning!

[Blurry62 in reply to Lanakay]

Do you have gca or pmr?

[Lanakay]

I have PMR. I am currently down to 7mg of prednisone. I bought a new pillow at my chiropractors office. I am hoping the chiropractor, the pillow or something helps I had a bad one last Friday.