Hi all not been on for a while hope everyone is keeping as well as they can.
Just a quick question, does anyone have pain in their temple area on one side it seems to affect my eye also it's very painful to touch and well just painful like an extremely bad headache but in the temple area. I have had it before but it comes and goes. I seem to remember dr Hughes saying what it was once but it was a long time ago and my memory seems shot to pieces. I feel under a lot of stress at the moment so maybe it's that. Had several TIA in the past so don't want to totally ignore it. Many thanks. 👍👍👍
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Gillyg
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I have had something very similar - I would keep getting it on the right hand side. It would seem to start around the temple area and spread around my eye - it was a nagging debilitating pain and my vision would blur.
As with so many symptoms, it can be down to a number of causes so I would go and get it checked out if I were you. In my case it may have been down to a type of hemiplegic migraine or down to occipital neuralgia.
I had a couple of nerve blocks put into the occipital nerve which seems to have done the trick for now and I've not had a bout of this since the last one but I've never been too sure of the actual cause.
Ok went to see the Lupus nurse today and explained I was a little concerned about the temple pain and she had a word with the consultant who said I should have a blood test, she wasn't expecting anything to be wrong and if it didn't show anything then she would carry on with the plan of reducing my steroids. So no answer and to be honest no interest. I hadn't had an appointment for 8 months and the first thing she said was you look so well, what is the one thing lupus people look like it's well. I just said I didn't want it to be anything that could be threatened me having another TIA I have had a few. It's just frustrating I was told phone next week for blood results and will see you in 6 months. Well I should know better 30 years of being fobbed off. Thanks everyone who answered and I hope you all get answered. 👍👍👍
no nothing different to normal bloods CRP etc. had a phone call this morning to say all was ok and to start reducing my steroids. I had a comment to say to her and i didn't get the feeling she was happy with what i said. Dr G Hughes once said to me he doesn't really take too much notice of bloods if the patient is saying differently he will look at the patient. You can't get anyone else to see this. I told her my pain levels had gone up since last reducing it and she said its not that she doesn't believe me oh my god those words so upset me. Why would anyone make that up. The bloods said all was settled. I have Fibro and SS also. I totally understand wanting to reduce the steroids as I constantly have chest infections and last year was diagnosed with Microvascular angina after having a heart attack. These people don't understand living with pain I only blame myself I put up with things and only say when I am desperate for help. Anyway sure all will be ok thanks for answering. take care. x
Oh my goodness. You poor thing. It's horrible when you ask for help or tell people you are unwell and still get no help or understanding. Are you seen by cardiologist as well?
Yes I am on open access for cardiologist and yes it was a lupus nurse. Not going to stress about it. Just a shame that unless you look really ill or play on it you don't get the understanding that autoimmune illness cause a lot of unseen pain. Hope you are well at the moment. 👍
Hi yes that is what dr hughes said it was he is from St Thomas in London that was a long time ago. I go for my check up tomorrow I will mention it. Thanks
I suffer from headaches of various descriptions and have down since my teenage years.
I am limited for time, at the moment, as I have a poorly boy at home, needing my attention.
But I have today posted about the lesions found on my brain MRIs and I had the worst headache ever and my longest earlier this year - around 6 weeks, with the news symptoms of a tightening feeling around my head, my head was tender to touch and I had shooting pains down my neck, which felt like my veins.
I had worried in the past that these terrible headaches were indicative of strokes/TIAs but apparently you don't get a headache with a TIA. Is that right??
My GP ended up forcing bed rest for 48 hours. My husband took time off work to deal with our children and the school run and cooking etc, so I stayed in bed and rested. I used paracetomol, ibuprofen - both max dose for the 48 hours and diazepam too. (At that time the local rheumy was telling me that I was no allowed steroids under any circumstances and I lost my temper a bit and told the nurse it was inhumane).
Since starting Mepacrine (along with my hydroxy and MMF) I have had a lot less headaches, they are shorter in time and less severe. Plus paracetomol or sumatriptan work now - whereas they didn't touch it before.
I will follow your post with interest. I hope you get some useful replies.
I'm 21 and I've been getting the same thing for the past 5 days. I went to my GP and she suspected temporal arteritis and got emergency bloods done (just an ESR) and said that I'd hear that night if I would need to be admitted to hospital or not. My levels came back fairly normal for me so they decided not to take any action, but like you, I know the bloods don't indicate everything! The pain is still here and my head in general has been pounding for 5 days. Not sure what to do because I know there will be no intervention until something shows in the bloods!
Do you have an understanding GP? Mine helped me in the end (not Rheumy or rheumatology nurse). She gave me some sumatriptan, first 50mg tablets and then 100mg tablets, which work better. And the last big one I had diazepam and bed rest to get on top of it. Worth seeing your GP. Headaches that don't go for days or weeks are SO debilitating.
Made an appointment for Thursday to see the GP who I saw and did the blood tests last week (she's not my GP but she was the on call Doctor at the time). She's been really helpful in the past so here's hoping! Thanks for the advice. X
Good luck! I hope she's able to offer you something that helps and you can knock this headache on the head 😆. Like I said, my last big one went on for 6 weeks, which it never should have, but I didn't know where to go and didn't get help from my Rheumy department. Best wishes. Wendy
That sounds great! The highest dose of steroids I had was 20mg a day, for 5 weeks tapering and I had relief from all lupus symptoms and no headaches. I wish we could stay on steroids at those dosages with no side effects, as the truth is steroids work wonders! I really hope you stay headache free. Are you on the steroids for long?
Hey Wendy, really sorry I seemed to have missed this message!! I stayed on 40mg of prednisolone for 5 days and it really knocked the headache on the head!!! I’ve still been getting intermittent headaches along with my droopy so eye so I’m seeing a neurologist in a couple of weeks time. Hope you’re doing well xx
Hi Wendy, he didn’t make much comment about the headaches but he is thinking I have myasthenia gravis which is causing the droooy eye. Thanks for asking! Hope you’re well xx
I have to admit that I had to Google that, as I have never heard of it. I hope he is taking good care of you and can offer some treatment options. Take care. x
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