Broken record head pain

[Plains]

I am once again at my wits end. Sharpe pains in my head on the right side near the temple.

I had this a few weeks back and upped my dose to 20 mg of prednisone. I am now down to 9 mg. I have the Actemra injections once a month. I cannot help but feel there is something else going on in my head, not just possible GCA. I have asked for a PET scan by my Rhumy but he does not see the need. A year ago my GP ordered a MRI do to ear pain and hearing a heart beat in my head.

What also happened that makes me think it is something else, twice I was sitting watching TV snd I had a very strange sensation and felt I was going to pass out.

Would GCA make you feel like this? I hate to go up on the prednisone, I feel in a constant fog being on this high dose.

I see my GP on Monday, I pray she will order a Pet scan. I feel like I am just waiting for something bad to happen. So to keep going back to my head pain…. I don’t know what else I can do. Thank you so much for listening.

[SheffieldJane]

The high anxiety I can relate to, the Pulsatile tinnitus too and ear pain , all have been experienced by me along this journey, related to PMR, GCA and Pred and Actemra. I agree that you ought to have investigations such as blood pressure, ears, temperature. The foggy head - we call it Pred head, is with me all the time as well.

I don’t really regard 9 mgs as a high dose. I have certainly known people to manage on 60-80 mgs for GCA. How about seeing a well equipped optician/Optometrist? This puts my mind at rest because my biggest fear is the loss of eyesight through GCA ( having had 2 grandmothers that lost theirs for reasons obscured by time).

I have had several MRI scans they have never shown anything that prompted action.

My non cranial GCA/LVV was diagnosed by a vascular ultrasound scan with abnormal cells spotted in my left armpit. The treatment was an initial dose of Pred 40 mgs, tapering quite quickly to 10 mgs, with the help of Actemra. Above all, try to ease the stress this causes - it makes everything worse. You are pretty well insulated against catastrophe. Best wishes!

[nallufl24 in reply to SheffieldJane]

There is no radiation used in MRI’s. They are actually safer than x-rays if that eases your mind a little.

[Plains in reply to nallufl24]

My understanding is a PET scan can show artery’s and inflammation. Since I had an mri a year ago maybe the insurance will not approve it.

[SheffieldJane in reply to nallufl24]

I have had so many scans. I am glad that the radio frequency , magnetic scan has none So the concern is any mental implants and sensitivity to the dye sometimes used. I have had about 4 in recent years and worried about it. Thanks.

[Plains in reply to SheffieldJane]

I have an ent, everything was checked out.

I also monitor my blood pressure, all good.

My understanding is an MRI is not an x ray so no radiation. I was down to 1mg of prednisone a few months ago with no pain until my head/ temple started bothering me. Went back up to 20 then working my way down. Hope my GP can do something, maybe another ultra sound if my artery’s., they only did my neck no where else. I have read other had their arm pits done.

[piglette in reply to Plains]

MRI uses magnetic resonance not X-ray. Hope your GP can do something.

[SheffieldJane in reply to Plains]

Yes I had head neck and armpit in an ultrasound, the abnormal cells were in the armpit.

[Plains in reply to SheffieldJane]

Thank you I will ask about this!

[Louiseiw]

When I was originally diagnosed with GCA I was started on 60mg pred. When I got down to 30mg all the pain etc kicked so I had to go up again. At 25mg the same happened and I wasn't able to reduce any more. So I started Methotrexate, originally tablet but they made violently ill so I now inject myself once a week. How often do you the Rheumatology team? They should be monitoring your blood pressure etc.

I agree the constant brain fog is horrid. I used to be really organised. Had a photographic memory etc. Now I am lucky if I remember my own name.

When you see your Dr explain the latest happenings and your fears. Prednisolone does have anxiety and depression as a side effect so maybe a small dose of an anxiety tablet may also help.

[Plains in reply to Louiseiw]

Thank you. I was on a very high dose when they first suspected I had GCA. I hope my GP can help. My Rhumy is retiring. I have been happy with him but looking forward to meeting my new one in January.

[PMRpro Ambassador]

I suspect a PET-CT wouldn't provide much evidence regarding GCA at the dose of pred you are on - it masks the inflammation uptake of the glucose plus the brain tends to swamp signals in the head.

When I had similar passing out sensations it was due to a plummeting BP due to long pauses between heart beats - and a PET scan won't catch that.

You need to differentiate between the purposes of various scans. Your neck scan was almost certainly a carotid scan - a different technique looking for something different, narrowing of the artery or turbulent blood flow as a signal there may be something contributing to risk of stroke. u/s for GCA is a specific technique looking for the halo sign (not the giant cells as has been suggested) of a thickened and less compressible artery wall,

It is all very satisfying to imagine that "scans" answer all the questions, They don't, just as lab results are also only part of the picture.

Sharp pains in the temple area can be due to trigeminal neuralgia or tempromandibular joint problems. I think you need to marshall all your symptoms and discuss them with a GP first of all, also expressing your concerns.

[Plains in reply to PMRpro]

Thank you very much. I will bring up all this with my GP

[HeronNS]

Is the pain transitory or persistent? Trigeminal neuralgia is a very sharp pain but tends to only last for a few seconds or up to a couple of minutes. I see that PMRpro has mentioned this and other possibilities and I'm sure she's right that your actual symptoms need to be considered with neither you or your doctor assuming that they're related to pre-existing known conditions. They may be, but just as easily may not. Hope you find relief soon. 🌼

[Plains in reply to HeronNS]

Thank you. They are transitory but alarming when it happens. I am afraid to go back asleep when it happens at night. Hoping my GP has some thoughts about everything.

[SheffieldJane in reply to Plains]

My daughter has a constricted blood vessel in her head ( reversible) that produces thunderclap headaches. They also suspect Vasculitis since her head MRI. She is under a neurologists whom she likes and trusts. This is all I know at the moment.