Headaches

[TedTheMaineCoon]

Morning !

Just asking if anyone else gets headaches / migraines with PMR ? Not on steroids at the moment.

seems to always affect right side of head & eye . Maybe cluster headaches ?

[PMRpro Ambassador]

If someone with PMR gets a headache that isn't something they have suffered before, we would tell them to go to the doctor because GCA must ALWAYS be borne in mind. You cannot assume it is a migraine without medical confirmation.

[TedTheMaineCoon in reply to PMRpro]

In the summer the rheumy said I had migraines 🤷🏻‍♀️ And because I’ve not got double vision, jaw pain when eating & temple pain , she doubts it’s GCA . So not sure what to do , I think it best to contact Gp , like you said can’t rule it out with having pmr .

Thanks for reply .

[PMRpro Ambassador in reply to TedTheMaineCoon]

There are many GCA patients who had no double vision, jaw claudication or temple pain. It all depends which arteries are affected.

[TedTheMaineCoon in reply to PMRpro]

Oh I see ! Thanks for info . Will bear that in mind when speak to Gp

[DorsetLady PMRGCAuk volunteer in reply to TedTheMaineCoon]

No temple pain as such, no raised temporal artery, no double vision- did have jaw claudication for a while - and eventually loss of vision [though blurriness] very late on, when damage done. So not everyone has ALL the so called classic symptoms. As PMRpro says depends what arteries are affected - and that isn't always obvious.

[TedTheMaineCoon in reply to DorsetLady]

Thank you for reply

[SnazzyD in reply to TedTheMaineCoon]

I mainly had scalp pain. Visually I black spots in vision if I was exerting myself and if I lay on my worst GCA side at night, that eye greyed out for a few minutes. Occasionally at night in pitch black I got sparks of light in my vision. No double vision. My jaw pain was a late symptom about an hour or two before my eyes felt like they were shutting down. Luckily I was in A&E by then.

[TedTheMaineCoon in reply to SnazzyD]

Thank you for the reply

[random901]

Hello! Yes, I get a migraine aura about once a week, earlyish morning, lasts 20 mins, left eye usually, sometimes both. Very slight headache. Abandon tasks eg knitting, close eyes and try to ignore flashing zigzag rainbow!

[piglette in reply to random901]

My next door neighbour mentioned the zig zag vision effect a couple of days ago, as she has it. Retinol migraine. I had not come across it before.

[PMRpro Ambassador in reply to piglette]

I had one last Friday evening! Never had one before - just ordinary migraines. Bit unnerving at first but it went after about 20 mins max and no headache. Been discussed here a few times.

[piglette in reply to PMRpro]

I think I have had one a couple of times that lasted around half an hour, but no headache.

[random901 in reply to PMRpro]

Reported my migraine auras during phone appointment with Rheum at hospital yesterday. They rang back and said go straight to A&E! About 6 further phone calls followed where more info was gathered. I now have appointment instead with Optomology Monday, but must up my pred from 20 to 40 for this weekend, and go to A&E if I have visual disturbance or headache before then. Grateful for their concern, but wondering whether this is over-reacting. Was so looking forward to getting go-ahead to reduce pred to 15, too. I've had these auras since my early 20s, but they have only reappeared since taking steroids. Do you think it possible to resume my taper after the appointment, all being well?

[PMRpro Ambassador in reply to random901]

Better safe than sorry I suppose - and given how many patients complain of being ignored, at least your rheumy dept cares! Probably. You can be at more for up to 2 weeks and drop back to where you were.

[random901 in reply to PMRpro]

Thank you!

[random901 in reply to PMRpro]

Migraine update: thorough examination by eye doctor yesterday confirms these auras are indeed migraines and not GCA flares. What a relief!

[DorsetLady PMRGCAuk volunteer in reply to random901]

Good to hear….

[nallufl24]

I never had jaw pain, temple pain or vision issues. I had a slight headache and just didn’t feel well. I also had very high inflammation levels. A temporal biopsy was positive so I would definitely check it out.

[TedTheMaineCoon in reply to nallufl24]

👍🏼Thank you , will do .

[Pixix]

Yes. But ve had migraines on & mostly off, thank goodness, since I was a teenager…first thing for me is only being able to see half a person, or reading is difficult. Then the jazzy patterns. Then the headache. If I haven’t taken tablets sickness can follow. But since I’ve had PMR (4 years) I’ve only had one, & it was very light. I get a lot of nausea when I’m tapering, light headed, balance even worse. No jaw pain, temple pain, & only jazz sight problem for 20 minutes as part of migraine.

[TedTheMaineCoon in reply to Pixix]

Thank you for your reply .

[SusieW2]

Wow! This is overwhelming. I've never heard of half this stuff. I was diagnosed with Sjogrens Disease over 20 years ago through a blood test, no symptoms. But the typical ones have come on over the years. I tend to go to the simplest explanations. I get sinus pain regularly, mostly on one side and at night. I correlate our dryness with diminished and thick sinus fluid and stuffy and blocked sinuses. I use an extra diffuser in the winter at night for extra moisture, essential oils breathed into my stuffy sinuses to open them up, homeopathic medicine for allergy/colds and use a salt inhaler to lessen post-nasal drip. None are toxic or invasive but seem to help. I used to get sinus infections but now haven't had one in years. If you try them, please try one at a time to judge their effectiveness for you. Good luck.