Last Monday suddenly had shocking red hot pain above right eye- thought I was having a stroke but obviously not after a few minutes where the pain carried on spreading to back of head. I was calling out in pain and called 111. After lots of questions she told me an ambulance would be with me within 2 hours. 4 hours later a friend had come over and we cancelled ambulance . Took 2 Co-codamol and slept fitfully - called Doctor, could not get an appt - tried the GP hub - no appointments- eventually called a private doctor - drug he gave me reacted badly and I was vomiting thru the next night so I called 999 as pain was exacerbated. I was told a “Medic” would call back. All these calls and emails I sent stated I was 75 and alone with a husband who was a stroke victim. I have never felt so helpless and lost in my life ,!! Now awaiting call tomorrow for time of hospital appointment to test (biopsy) for Temporal Arthritis. Any one else had this pain? It has diminished unless I move my head forward - nuff said 🥴
I have help now and am a very strong independent woman but goodness me, if I hadn’t had the money to get a private Doctor??
I was actually warned NOT to go to AE due to COVID surge here which is why they couldn’t send ambulance
Sorry I’ll stop now.
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Cas70
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This sounds similar to something I have. I get a pain above my right eye and it arches over my head and goes down to the back of my neck. It is a neuropathic type pain so I take extra pregablin. I get it more when I am exhausted or over doing it
My Rheumatologist has sometimes given me an injection in the base of my neck as she believes it is triggered by entheseopathy. The steroid injections really worked.
I hope you find an answer to the cause of your headache. I took had to clutch my head and scream out . They call it pick axe headache.
Thank you so much happytulip - that is reassuring. I just got some relief by dabbing a gentle menthol cream across my forehead and on tip of my nose - try anything !,, x
My sister has just been diagnosed with this. She is on steroids and she said they helped and fast. She said it was the most horrific pain and she is not wuss so I feel for you. Take care and keep us updated
What a terrible experience but well done for getting through it and having the energy to rant about it -respect (as my son would say).I have RA not Lupus but do experience this and use codeine based products OTC as my GP told me it was tooth ache and to see the dentist!!!!! Interestingly migraine medication doesn’t touch it as for years that’s what I thought it was. Glad you got through the episode to fight another day 🙂
Hi Cas, what an ordeal you have been through. At least you are being seen and hopefully you will get some answers soon. I have UCTD and was diagnosed with Temporal Arteritis (also known as GCA) in March 2020 and then with PMR last month. The GCA head pain was horrific and relentless, it started to abate within 48 hours once on high dose steroids. Do follow the link that PMRPro posted - it is a really helpful and informative site. I really hope you don’t have GCA - but do keep us posted as to how you are doing. Take care and accept all the help offered to you, best wishes xx
Thank you so much for this message - I am still waiting for some kind of consultation with my Lupus Dr !! I think since I can’t move without sickening head pain I will take my usual dose of Pred it might ease it off a bit- I can’t believe nothing is happening and it will be one week tonight. Have lost 4 lockdown kilos is weird bonus - thank you all - will let you know diagnosis if I ever get seen. 🙄 xxx
Ignore the warning, mask up, hand gel up, get a lift or taxi to the ER or dial 999 emergency. Take you to the ER and insist on emergency treatment. Its important this is looked at and they can't refuse you at the ER. They may do a test, but you are probably negative and they have to see you. Take an assertive friends with you to insist. I don't know what it is. You have had strokes in the past but it could be anything. It might be neurological, it might be something else. Just go to the ER and insist on being seen. Stuff the "advice" people on the phone, probably a bot anyway . You have a right to urgent care and if you are there, they can't refuse, but insist on the urgency of it. If nothing else works tell them you fell down and hit your head. They will see you then. Its ridiculous but you practically have to hold a gun to them now to get taken seriously. Don't wait for medical help. Get down there and demand to be seen.
I agree- go to emergency! Last October I ruptured my calf muscles walking. I did not go to hospital due to Covid. I followed website advice. Something went wrong and it’s not healed inside. Scan shows internal tear in muscles after 5 months. It’s now nearly 9 months and still in pain likely also with permanent limp! Please go - nothing to lose everything to gain 🙃
Thank you LynMarie - another day with no (promised)contact. My husband’s carer is taking me tomorrow- I have taken advice from the good people on here who have the condition and it has eased it xx
Just came across your post. I called A&E but nothing done. Had just found out I have a puitary gland tumour bit gold no action as too small. Just had major back surgery as headaches so strong I’m vomiting and have t has sight in one eye for 2weels.
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