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Adjusting to life with temporal arteritis
Would like to hear from people that have gone thru or going thru temporal artritis. I am now going on my 5 month after being diagnosed. It is getting better but very slowly. Is this normal?
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So I had the Ultrasound on my arteries yesterday. They had the results posted on my online chart in just about an hour. The results were that everything was "normal". So glad that even though I am currently sitting here in my recliner with one of those I shaped pillows keeping my head which is sore to the touch from touching the back of the recliner and my jaw is sore to the point that my wife says I don't open it all the way to talk and, my cheeks hurt, eyes are watery and blurry and feel like someone is trying to push them out of my head from inside and my temples feel swollen and hurt to the touch, that everything is fine and normal! So it's all just Normal! That must mean that everyone has this exact same thing happening to them too. I should just stop nothing the doctors and forget and live with this. So glad that I can finally move on from this because it's all just Normal!
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Don’t give up , you could request for a follow up and they can refer you to further testing with perhaps another Specialty or different testing
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1 Reaction@amptrooper can you get a second opinion? I would be asking the doctors if it's all normal then what is causing these symptoms. I agree with @soteloli - don't give up. If they are not helpful then I would be looking for another doctor.
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1 ReactionI somehow lost the post I had been writing you. Having a normal biopsy doesn’t prove that you don’t have GCA. I had been on prednisone for a few weeks before they scheduled my biopsy so mine also came back as normal . My rheumatologist said that the clearest sign that I had GCA was that within a a few days of being on prednisone I felt so much better. Hang in there and if you feel like the doctors aren’t listening make an appointment with another one. Having a good working relationship with your doctor can help you get through a lot of the ups and downs
Sorry if I posted twice on this. I just can’t find the first one
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2 Reactions@amtrooper....how frustrating! Just a thought. Look up trigeminal neuralgia and see if you share these symptoms. Type one presents with electric type shooting pain. Type 2 is an awful ache caused by the nerve, which has 3 main branches, with many branches off the three. Affects the jaw, teeth, cheek, eye and brow, forehead and scalp. Something to consider. Oh and may not affect all areas mentioned...but may. JMJ
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1 Reaction@amptrooper - I understand what you are going through. I kept going to doctors in Orlando and no one knew what was wrong with me. Finally my husband took me to the emergency room at Mayo Clinic in Jacksonville, FL. They diagnosed me in 1 and 1/2 hours and the biopsy was scheduled the next day. Do not give up. Remember that this can cause blindness. Have you had the Sed Rate and CRP. My Sed Rate was only 38 and they believed that I had a really bad problem. Do you have a really bad headache. It is interesting that you had an ultrasound. The Neurologist that was taking care of me said that an Ultrasound would not show anything. Where do you live?
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1 Reaction@amptrooper - I tapered off of my Prednisone in October and around Thanksgiving I started having jaw pain. I got in touch with my Neurologist thinking my GCA was back. They did the testing and my tests (Sed Rate and CRP) came back normal. They told me to see my Internist. After seeing her, I asked for a referral to an ENT because of the jaw pain. The ENT decided I had TMJ and told me not to chew on the side that hurt. My pain is now discomfort that I can live with but I read online to use ice and heat and message in front of the ear. You might want to see an ENT for the jaw pain. The ENT said they could refer me to a Maxillofacial surgeon. I said I did not want surgery but they said the doctor does more than surgery and would just diagnosis and help with the pain. Mine is getting a little better with the ice packs and heat and massage in front of the ear. Mine is just on the right side. I also went to my eye doctor because of pain in right eye. She said everything looked fine. I don’t know if you have seen an ENT.
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1 Reaction@amptrooper A friend had what her Dr thought was THE but she went to bed dentist for another problem and told him about the pain Dentist checked her teeth with X-Ray anf d found an abscess on her molar after removal and antibiotics she is fine so suggesting to also don't rule out your dentist
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1 ReactionI was just diagnosed with temporal arteritis yesterday after years of everyday headaches. This past week has been the absolute worst it has ever been as the vessels in my neck and head got so inflamed and my blood pressure was at stroke level. Now on prednisone but can't get into neurologist for follow up till next week. Looking for advice in the meantime. Headaches not bad but still really hurts my neck and head to lay down on the pillow at night. Any suggestions as to pillow types? Neck still gets very stiff and hurts too. Also anything suggested for how not to reaggravate those vessels? Sitting or lying positions, etc? Just starting to learn to deal with this so any everyday living suggestions would really be appreciated.
I can not give you any advise on a pillow type but I had this in the beginning and after being put on prednisone in 24 hours the pain was all gone.
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