Don't seem to be getting anywhere

[Daisydarling]

Good morning, last posted about two months ago (don't know how to find my post or copy and paste) Went to A&E with frontal head ache facial jaw pain (had only one headache in my life and I am 76) Spent day waiting when I did see doc he didn't even get out of chair just had blood test which showed esr and cpr normal.They eye pain was bad so next day went private at optician.I do have a tumour at the back of my eye and thought it was that (never had any treatment) He said no swelling of optic nerve. Went to GP few days later he said it was prob virus (face felt swollen) For years I have had flares of stiffness muscle pain and just feeling weak and unwell. Always blood tests came back ok (been hypothyroid for thirty years.) Wouldn't start me on pred which is madness as it progressed to getting up in the night dizzy falling double vision which was very scary. Another dr app (yes amazing to get one!) said I had tinnitus ear ache which I had forgotten to mention before.Listened to my arteries in neck and in my ears.Then arranged for CT scan of head which I had last week.Update pain in head and eyes and dizzyness has subsided a lot,I can still feel it and gets worse when bend down or any excersise Still have muscle pain. My depression has got so bad that I find it hard to do anything and that just isn't me as I have a great granddaughter I look after twice a week (16 months hard work stage!) but now can only have her when husband is hope as frighted the dizzyness will start again. Also have very low blood pressure and irregular heart beat which had a 24 hr holter dr didn't seem to concerned,But have never been dizzy with it.So sorry for long post x

[DorsetLady PMRGCAuk volunteer]

Goodness, what a story of ineptitude from A&E and GP… headaches/ear issues do sound very GCA ish, [normal CRP and ESR not not rule them out] but could also be TMJ issues - have a look at this and see if anything rings true -

cedars-sinai.org/health-lib...

Dizziness is typical of low BP - so perhaps needs more investigation - but could also be connected to ear issues- BPV -

healthline.com/health/benig...

PS - to find previous posts just go to your profile and you’ll find them listed there.

[PMRpro Ambassador]

You will find all the posts and replies you have written by going to your profile page - click on your avatar at the top right of the thread where it says More and choose Update profile and then See Profile when you get there,

I don't like lazy doctors - a physical exam of your head is the least they can offer! What you are describing is very vague and not entirely typical of GCA or PMR really. I know it is hard but without fairly concrete signs and symptoms they can't really just start someone on pred.

What was the jaw pain like - was it all the time or just when eating?

How low is your BP? Low BP per se isn't really a problem unless it causes symptoms - like dizziness or falls. Double vision is a red flag - but the best place to start with that is at your optician when your GP is not helpful. Although the dizziness, falling and double vision at night would justify calling 999. Have you fallen much? If so, requesting a referral to the Falls Clinic would be justified I think.

[Daisydarling in reply to PMRpro]

Thank you,dr said keep a chart cause she thought it was POTS so I did, and it can go very low . The lowest distolic was 84/53 and systolic 62/68 but that's usually when its irregular. The jaw pain was more of a deep ache and I could open my mouth wide. Thank you for your concern x

[PMRpro Ambassador in reply to Daisydarling]

Yes - but was it just any time or only when you started to chew something>

I think your doctor needs to investigate that BP, especially if it coincides with an arrythmia (irregular heart beat). An arrythmia can be a cause of low BP because the heart isn't beating effectively and pushing blood out into the system and one particular type of arrythmia can cause a dramatic drop on BP like that. Jaw ache can also be a sign of heart problems,

Do you know what your pulse is when it happens? Have you got a pulse oximeter?

[Daisydarling in reply to PMRpro]

Yes had to do a sitting and standing bp.Pulse went up average 10/15 when standing. Usually between 60s and 70s. They did an ecg and fitted a holter heart monitor over 24 hrs nab said there were a few concerns but nothing major.Thinking of going private as like other hosp ours has a very long waiting time.Went to docs two years ago and said I think I have heart problems but the didn't bother following it up. I used to be so active in the pool with my grandchidren but now very weak and tired.No my jaw just ached all the time not just with eating.Shoulders neck arm aching but back of head and front ears ok x

[Ruthy53]

my husband had low blood pressure dizzy spells especially if he bends down and comes up and a bit of an issue with balance at times. He has an irregular heartbeat and fatigue. Diagnosed with sleep apnea. Given machine to help but still exhausted. He’s 75. Recently picked up with ecg sinus rhythm problem he had a grade 1 no issues 20 or more years ago. Now progressed to grade 2. So suggested a pace maker due to have op next week. Hoping it helps. Could this be part of your problem? My sister has no thyroid gland since mid 20s now 40 yrs on lots of autoimmune issues with fibromyalgia arthritis diverticulitis and mental fuzziness. Hormones aren’t always understood. Her muscle and joint pain required pain relief for years. Hope this helps

[Daisydarling in reply to Ruthy53]

Thank Ruthy hope your husband is feeling a bit better now.Yes so many different things it could be.Still getting head ache when I do anything like turning head.Muscle and joint pain so will mention it when see dr next week x