Temporal Arteritis: 111 then a Visit to... - Atrial Fibrillati...

Atrial Fibrillation Support

31,037 members36,637 posts

Temporal Arteritis

Offcut profile image
28 Replies

111 then a Visit to A&E I helped with the shopping yesterday at about 6 after cleaning and loading I started to get a severe headache which I thought was at first a migraine but then it all got a bit weird. The pain was on the outside of my head and very painful to touch as well? by 10 pm I was getting worried as all sorts went though my head! So I call 111 who went though their check list and decided a local Out of hours would call me back. They decided I needed to go to A&E! The pain was so great I went with the wife. After many hours of tests and CT scan alone ( Wife not allowed in) I was booked into a AMU ward with other shielded people it turns out. After even more tests it was decided I appear to have Temporal arteritis. With that I was given 16 steroid tablets and co-codamol, Sleeping was not an option as it hurt to lay on the pillow, plus I was still being checked over for something or other all though the night and morning. 5 pm the next day I am given 4 weeks of steroids (16 a day in the mornings) A card telling people I must not stop taking the steroids and a letter to my GP and a Rheumatologist and booking of an MRI. Just found it can affect the eyes so fingers crossed

Be well

Written by
Offcut profile image
Offcut
To view profiles and participate in discussions please or .
Read more about...
28 Replies
jeanjeannie50 profile image
jeanjeannie50

Oh my goodness Offcut, I was just thinking how nice it was to hear from you again, but what a worry that pain must have been for you. You're on 16 steroid tablets - wow that's a hefty dose! I really hope they cure the problem for you.

Honestly, it's no fun growing old is it? When young I used to wonder why older people always talked about their ailments. Now I've become one of them I understand and do the same. Me and my friends have a good laugh about it as we discuss our health problems (shhh have to keep quiet when young people are around).

Wishing you a speedy recovery and please let us know how you get on. .

Jean

Offcut profile image
Offcut in reply to jeanjeannie50

Will do my arms are in a mess the nurse had a bad day trying to get the canola in Doctor had to do it and he apologised on behalf of the nurse. Which you do not see that often he was great with every thing else.

jeanjeannie50 profile image
jeanjeannie50 in reply to Offcut

I've been victim to people who aren't sure how to put a cannula in - not nice!

Offcut profile image
Offcut in reply to jeanjeannie50

I was dripping blood on my jeans as well. Then he asked you on thinners? Yes!

mrgwair567 profile image
mrgwair567 in reply to Offcut

I sympathise. Some nurses have no idea how to put a canula in. and patients are used as pincushions!

They should have it done to themselves and maybe then they would be a little more careful !

Offcut profile image
Offcut in reply to mrgwair567

I do not like needles do not mind the blood I have split enough of that over the years

mrgwair567 profile image
mrgwair567

I’m so sorry that you’ve had such a frightening experience! Just to be in hospital on your own is enough to contend with , without everything else you had to endure. !!

Hope that the pain is under control now and I wish you all the best for all the tests that are to come!

Take care !

Offcut profile image
Offcut in reply to mrgwair567

Thank you . The pain is still there but bearable now,

mrgwair567 profile image
mrgwair567 in reply to Offcut

Hi

Good to know that the pain has eased.

Take care

Kaz747 profile image
Kaz747

That sounds very scary. Hopefully the medication does the trick and you are feeling well again soon.

Offcut profile image
Offcut in reply to Kaz747

Matter of time I think. I do now have a reddish bloom on my hairline so not sure if it is the steroids or condition?

Auriculaire profile image
Auriculaire in reply to Offcut

One of the symptoms can be pain in the scalp so it could be due to the condition.

Tapanac profile image
Tapanac in reply to Offcut

It is the inflammation of the veins from within the skull

opal11uk profile image
opal11uk

So sorry to hear about your frightening experience , I can relate as I get something very similar, they test me for ITA's and can't make up their minds whether its visial migraine or ITA's or both! Good luck and take care x

Offcut profile image
Offcut in reply to opal11uk

I have fell into the not sure range on a few of my conditions. You get yourself prepared for one thing then they say "no it is this"

wilsond profile image
wilsond

That sounds grim! Hope the steroids and co codamol do the trick . Look after yourself now xx

Offcut profile image
Offcut in reply to wilsond

Me too!

Hatten28 profile image
Hatten28

Oh dear, that sounds extremely painful and upsetting, never heard of this complaint, I hope you make a speedy recovery and never get it again.

I take it this has nothing to do with a/f or related heart conditions.

Best wishes to you

Offcut profile image
Offcut in reply to Hatten28

Not 100% sure if it is related but I did wonder if my IPAH has anything to do with it?

Tapanac profile image
Tapanac in reply to Hatten28

No it is not related to any heart conditions. It is inflammation of all the blood vessels, veins in the brain/head. Don't worry

irene75359 profile image
irene75359

I had to look this up; sounds quite awful and just as well you were seen promptly. Hope the medication sorts you out. If you are on steroids, please be aware that your bone density will probably be affected and it would be a good idea to talk to your doctor about supplementing with Vitamin D3, K2 and calcium. Wishing you a speedy recovery.

Offcut profile image
Offcut in reply to irene75359

Thank you for the kind thoughts. I am already on vit d3 plus iron the calcium is something to look at. They did give me 40 omeprazol I am on 10 mg so I am expecting reflux to flair?

irene75359 profile image
irene75359 in reply to Offcut

I don't know about omeprazol, I'm afraid, but definitely look at the calcium. My friend had a high dose of steroids for over two years and was quite badly affected.

Offcut profile image
Offcut in reply to irene75359

I understand that they are a strange drug. My sister was told by her doc that if they tried to bring them out now they would probably never get passed but hey can help in a lot of ways as in my case.

Tapanac profile image
Tapanac

Well thank goodness, they found it early.

My mum had that terrible pain for nearly a year, going to her GP (who to be fair did think it was Temporal Arteritis or Vasculitis as it is also known). The GP finally got her to the hospital and we saw the triage and a doctor who recommended taking Aspirin!!!! The worst thing possible!! Anyway after moving her in with us as she was in such a state, one day she was so poorly, couldn't see, being sick, we rushed her to another hospital (it was Frimley Park which is also an army hospital) and within a couple of hours the army doctor there diagnosed TA. She was put immediately on 100mgs of steroids and within about 3-4 days felt so much better. She did have to gradually reduce the dose over time and eventually came off of them when she was well again.

I know, through Mum, the sort of pain you experienced so I do hope that you are much better now. 16mgs in actual fact is not so very high so please don't worry and you will be cured.

Take care

xx

Offcut profile image
Offcut in reply to Tapanac

I am on 16- 5mg so the total in whole is 80mg. I have suffered headaches most of my life with occasional migraines but this was on a different scale I really thought I was on my way for a stroke! But none of the usual suspects followed it? Still got headache and a slight redness on my scalp now and painful to touch but no way as bad so hope it is going the right way time will tell.

Thanks for the in house knowledge very helpful. It seems that only 10 to 25 in a million each year get diagnosed.

Be wEll

wheelsup profile image
wheelsup

My mother had this last year and the steroids did resolve it for her. Took a while and a slow weaning of the dose to finally be off all steroids. So unfortunately you have this condition but have hope that it can be resolved for you.

Offcut profile image
Offcut in reply to wheelsup

I have my fingers and toes crossed. Nice to know it can get better!

You may also like...

The dilemma of when to call for help

and after about half an hour when the pain hadn’t got any better I decided to wake my wife. After...

The saga of faints and Afib

another 'do' this morning ...not as bad. Went to my bed and it passed. Then got a call from my...

Bit of reassurance re anticoagulants (or what A&E call ‘blood thinners’)

my daughter who is a career decided to phone 111. After a long wait I went through triage, then was...

Chest pain after viscous bout of Afib?

Didn't feel too great that morning. l had a tooth extraction booked for that morning as well....

Finally - LV lead reattached today

until the 6 week check. After talking things through with the consultant, we decided that because...