Blindness

[rosie41]

Hi everyone a Happy New Year to you all. I haven't been diagnosed with GCA yet but I keep waking up in the morning with a headache and am so scared of going blind. I am only on 4mg pred. Does anyone else worry like this ?

[DorsetLady PMRGCAuk volunteer]

Hi Rosie,

Think its unlikely to be GCA unless you have other "head" symptoms - scalp tenderness, jaw claudication, stiff neck & throat, difficulty in eating.

Could anything else be causing headaches - eyesight need testing, sleeping differently, tension etc?

Do OTC painkillers help, if so unlikely to be GCA. does it last all day?

My experience of GCA was a headache like no other ever experienced.

You could try increasing Pred to see if that helps. Suggest you book appointment with optician, and doctor - in that order.

If nothing helps in the meanwhile, or symptoms increase, especially any eye problems - go to A&E. And try and stop worrying - that will only make your headache worse!

Good luck.

[rosie41 in reply to DorsetLady]

Thank you so much for your advice it has made me worry less about it

[Celtic PMRGCAuk volunteer]

Rosie, I think many of us would admit to worrying about succumbing to GCA whilst we are battling through PMR. However, rather than "worry", which will just cause unwanted stress, far better to just remain alert to any unusual symptoms that could suggest GCA. In a way, those patients with 'just' PMR are 'lucky' in that they usually become pre-warned and aware of the signs to look out for with GCA and know to seek immediate advice, as opposed to those unfortunate people who suddenly succumb to GCA/TA symptoms such as head/eye problems but be totally unaware that such symptoms need immediate treatment.

If your headache has started only recently and whilst on your present dose, then just returning to the previous dose where you felt comfortable (without the headache) may resolve things and provide an answer. If your headache is only there when you awake in the morning but soon disappears as the day goes on, I would have thought you haven't much to worry about - there was no let-up with my head pain until 40mg of Pred worked its miracles. However, if you still feel concerned, then do go to an ophthalmologist and ask him/her to examine the back of your eyes for any abnormality.

[rosie41 in reply to Celtic]

Thank you so much for your reply . I will do as you suggested

[lucky12]

Hi rosie41 I know exactly how you feel i have been sent to a&e twice with headaches one was more of a migraine however the eye specialist that I saw was very thorough and did put me up to 60pred and every thing settled down.l am now back down to 3.5pred which I did very slowly for 18 months. I do have PMR and like you aware of GCA but I agree with previous replies as your headache is your only symptom it is unlikely to be GCA so try not to worry and keep in touch with your GP and of course this site Good Luck

[rosie41 in reply to lucky12]

My surgery is terrible lots of doctors have left so mainly locums and they don't seem to bother about regular blood tests as they are so busy. I will phone tomorrow for phone consultation and see if I can have another one. I am looking forward to seeing Rumi on 23rd Feb might get me some help there. I was told 5mg was a high dose by my GP when she diagnosed it in June but I see a lot of people on here take higher dose. People say money doesn't buy health but at least you can see doctors when you want and the best ones at that.

[chockybuttons]

Hi, I was diagnosed with GCA a year ago, started on 15mg pred a year today. I'm 49 and already had type 2 diabetes, so doc put me on, what I thought was, a rather low dosage, glad to hear someone else talking about 15mg. Am currently on 9mg, did get down to 8mg but head worsened again. I understand how you feel, I do get concerned sometimes, but the good thing is you are on pred, so should be helping and controlling, though as you say you haven't had diagnosis yet, it may not be GCA, as DorsetLady suggested. Definitely talk to doc though if you want. Blood test every month or 6 wks, so am in contact with my doc regularly. Take care :-))))

[chockybuttons]

Sorry Rosie, don't know why I mentioned 15mg in my post, probably confusing myself with another post I was reading too, sorry !

[judam9]

yes , i wake uo in the morning with a ocular migraine. it does go away eventually, but it is worrisome to me too. the eye dictor said that i have the beginning of macular degeneration, which the thought of going blind is frightening. but it does no good to worry about it, in fact it only makes things worse. i do a neck exercise every morning,which for some weird reason seems to be improving that eye. a physical therapist told me how, and i still do my reg. exercises after that. about 5 days a week.

when i'm stressed out, the words keep moving up and down. and jumping around. but i must say the eye is getting better. i haven't talked to him about it yet. figuring out my check book is really "fun" , because everything keeps moving around. i never could see thru the left eye with a pair of binoculars. but now i can. weather thay will stay improving i don't know, but it seems that worry makes things worse.

take care.

[rosie41 in reply to judam9]

I such a worrier anyway I must try to be positive in the future.

Thank you for your advice god bless

[judam9]

i know it is probably in our genes. to worry. but we could try to switch our minds to something else more pleasant.

good luck to us both. rosie. love judi