I was diagnosed GCA 2 years ago, I started on 60mg pred and am now down to 12. I 've been through many of the ups and downs that I have read about on this forum, it's certainly a challenging illness!
Does anyone else still get really bad headaches? It's the one aspect that I find just so debillitating. I get them randomly, i.e, every day for a week then none for 2 weeks etc. I've kept a diary to check if there may be a cause that I've overlooked but there's nothing,they are random. I can cope with all the aches and pains etc but the headaches really get me down,they're so painful and after I'm exhausted.
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FranTodd
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However, has it been considered these could be cluster headaches - and then you need the right specialist to confirm it probably. Here is a reliable bit of info about them - they fit your description.
Thanks for the reply. The neurologist said the same thing, cluster headaches could be a possibility, so it's a 50-50 between that and GCA as the symptoms are similar. He's put me on 75mg of amitryptiline to see if it helps, so far no joy,its been a month but it can take a while to kick in. Fun and games!!! Thanks again for replying.
Can you describe the headaches. As you may have read, my GP has declined me anymore pred, and the initial five day at 40mg eased all my pain, however, now i have this steady temporal ache. The initial head pain a week ago last Thurs morning was extremely acute. This lasted for a while before reducing over two hours to a steady moderate pain.
My pain over the body, such as ribs, hands, wrists etc. flares up occasionally and lasts from hours to sometimes weeks. This GCA seems a different sort of pain though. All my inflam pain is different to my osteo pain (intra-articular hand joints or knees, lumbar spine) it is more 'burning', but I have never had the acute sharp -out of the blue- pain that my temple suffered at that time. I can really sympathise with you. All pain is very dibillitating.
Hi Daphne. The headaches come suddenly at random times and last about an hour. The pain is on the left side, behind my left eye, my skull,my inner ear and jaw,ending in my throat. It's very intense and I cant keep still, I wander around rocking my head. I'm sure people used to get put away in lunatic asylums years ago for behaving like this when all they had was a headache! My neurologist has put me on 75mg Amitryptiline to see if it helps and I'm still slowly decreasing the pred. Any similarities?
Lots of news today. Thanks for this reply, as it is exactly right. The PMR pro has been guiding me, because, as you, it is clear that my GP knows little about GCA and has put me at risk. Briefly:
Sunday morning I decided the action to take. I chose, first phone 111. Mistake. Waste of time.
Next move. Out of hours GP. Now success. Come and see me, he says. When I get there on my bicycle, it is a different GP, a lady. We have a long chat and I explain everything and answer all the questions. Alas....she repeats what my own GP told me. Essentially no more pred and I am to relax and go home.....I was upset by then having fought my corner for three hours. Tears came and I was shaking with frustration because I KNEW THE GP'S WERE NOT BEHAVING IN A WAY THEY SHOULD. She realised the state I was in and said she would call the registrar of the hospital. She repeated most to him as best she could and I listened. He immediately explained that she was wrong and that I should be in Secondary care and still be on PRed at 40mg per day until then. When I heard this I burst into tears with relief. I was so pleased, at last someone who immediately knew what I was talking of. The GP's attitude melted to one of sympathetic cooperation. She gave me a prescription for 40mg pred with an anti-ulcer stomach pill. A fast track letter to my GP to get me to a Rheumy. Exactly as the registrar told her. She was so kind and so caring, and so totally different. Soooo, I now have the pred med and an appt in the offing. Of course now I have the three to six months wait, unless someone cancels. (As I left, the GP was also going on about osteoporosis as a new long term concern caused by the pred.
Whew, that is a relief. I now know your sight is protected. Now you need to learn fast as you can about GCA. Visit the website pmr-gca-northeast.org.uk and read as much as possible.
Do not worry about osteo etc, this might never happen and there are ways of dealing with it. What sort of anti- ulcer pill (PPI), Lanszaprole, Omnaprozole? Read the side effects of both. Did she also prescribe Calichew if so don't take at at the same time as pred, Rule is pred for breakfast and calcium for lunch. They don't work together.
I have also sent you a private message, please read it.
Try this, spread your fingers through your hair and gently tug all over your scalp. Each hair has a little muscle to which it is attached, doing this relaxes the muscles. Bit like when you go to a hairdresser who has been trained in Shiatsu massages and uses the skill when washing your hair.
Follow this link and in the Tips and Tricks section you will find many tips from Patients for Patients with PMR and GCA.
Thanks Smoky, I do that sometimes, other times even that's unbearable though. Thank goodness they only last up to an hour,any longer and I think I'd chop my own head off!
Hi FranTodd,
I am hopefully coming to the end of my almost 2 year journey with daily headaches. I won't bore you with all the details suffice to say that GCA has been ruled out totally now and the best guess for mine now are migraines secondary to either Bechets or another auto immune/ inflamatory condition.
I saw the neurologist at the Neuroimmunology clinic at Addenbrookes 1 month ago who has started me on Topiramate an anti convulsant that can be used for migraine prevention. I had taken amitriptilline in the past which hadn't helped and they didn't want to give me beta blockers as I often get dizzy spells.
I think they only give you tryptans for occasional headaches, if you have to take them too often you get rebound pain and symptoms.
I hope the amitriptyline brings you relief. My daily background headache I could cope with, unfortunately a few times a month my pain would become more severe for 72 hrs making me miserable. Interestingly I am very light and noise sensitive all the time, I don't know if you have these symptoms?
The Neuro was quite amusing, she said I bet you have tried every painkiller and none of them did anything so you don't bother now! She got that totally right!
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