I have had a vein pain on the left side of my brain for a while. I mentioned it to an eye doctor and to a vascular doctor who is treating me for varicose veins. No one knew anything.
I finally went to the general practitioner and she said I could have temporal arteritis. It is so scary. I am on 20mg prednisone but I am a little panicky that it might not be enough. I have an appointment to see a vascular doctor on Thursday the 9th- not soon enough.
What should I be concerned with? I still feel the pain a little bit on the side.
I have seen an eye doctor because I have those eye floaters. He saw licking on both eyes but didn't make a big deal plus he didn't know about the danger of temporal arteritis. I have had back stiffness for years and years and also around my neck so I always thought to see a chiropractor but it never goes away. I thought it was my spine so I have an appointment with a spine dr made before I was told about this disease.
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Elizabeth55
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If it’s one sided then less likely to be GCA (won’t say it can’t be, because it could).
However from my own experience and all I’ve read about GCA, I am still a bit doubtful - but any new headache should be investigated- and at least your GP has considered it. There is obviously something amiss, but tbh I’m not sure what.
As I said please let us know outcome and fingers crossed it’s not GCA or anything as serious.
I’m sorry you have this anxiety without any clear diagnosis. To be honest, GCA is often based on symptoms rather than test results, and of course this is difficult because the prednisone affects the symptoms! So not easy to diagnose.
I can only endorse DorsetLady’s very clear list of symptoms, and agree that if your condition worsens, you should attend the ED for an assessment.
One thing I am not clear about, is why you are on 20mg prednisone. Generally this would be a dose appropriate to PMR ( polymyalgia rheumatica). Have you been diagnosed with this?
I haven’t been diagnosed with anything yet.I have an appointment with a vascular surgeon for Thursday. The rheumatologist for January so I need one that is sooner.
I have had back stiffness for years. When my head goes back I feel it in the spine. Also stiff neck so when I look to the sides I feel the stiffness.
I cannot comment or advise on the issue of GCA but it may be worth looking into a good physio' who could massage the sternocleidomastoid muscle and provide you with exercises to soften it up.Quite often this can be the cause of the kind of pain that you refer to when rotating your neck,the deltoids could equally need some work but having gone through a similar problem it can help to get the correct exercises.
I am very surprised that your eye doctor was not familiar with GCA. I imagine that as a significant cause of sight loss he would be totally familiar with it. I hope that you get better help with your Vascular doctor this week!
Yes I agree and I feel disappointed since it has been over 3 months since I saw him twice. I know the sooner we tackle any problems then better results we get. I also made the wrong choices by thinking it was my back causing the pain.
Thank you all. I will update once I have more information. I am hopeful now that maybe it isn’t GCA. Thanks for replying. It is so scary when one finds out that there is something wrong inside that can cause so much pain and anxiety.
Morning Elizabeth, nothing much to add to the already excellent comments already made, the doctor prescribed you you with 20mg of Pred has taking that every day made any differance in your pain or stiffness?
It has given me a little sense of security as I was panicking about my eyes since I do feel that my left eye is going through something not good.I was contemplating going to the hospital. The pain on the vein is less strong but I still feel something there. I am also praying. It is a scary time for me and my family.
If you are sure it is pain on the vein in the forehead, then it is unlikely to be GCA -which ONLY affects arteries. Where on your forehead is the pain?
Those could be signs of dry eyes - do you find you get streaming eyes, watery tears? Are they gritty in the mornings? It is quite common in many autoimmune conditions. If so, then you can get artificial tears and sprays from the doctor/chemist/optician which will ease the symptoms. That is always worth a try. And try to limit the time you spend on screens, whatever you use. Or consciously blink more - we tend not to blink as much when looking at things on a screenand that makes dry eyes even worse.
Hi again, yes, I can understand the worry, anything to do with eyes is always a scary time and hopefully the doc on Thursday will come up a diagnosis. Did the Pred help with the neck and back pain?
Hello Everyone,Thank you all for replying to my post.
I went to the hospital last night because of the constant pain on the vein.
I had a catscan done and it turns out I might have Chiari malformation and not temporal arteritis. The next step is to find a neurosurgeon who specializes in Chiari malformation since I might need surgery.
I THINK there is still someone else on the forum with Chiari maformation. It is a rare alternative - but the symptoms if it and GCA do overlap. So pleased someone looked a bit further.
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