Migraine... ?

[Roltuba]

Those of you who have GCA, are the visual disturbances at all like those of Migraine? I am still on 6 mg Pred split morning/evening after more than 7 years of PMR, still have stiffness and the occasional flare so not trying to get any lower, and have a knee which swells and has been drained /steroid injected 4 times. (150 ml drained couple of weeks ago). I haven’t had Migraine since my teens, when they were very bad, but had 3 episodes over the last couple of months which I recognise as the visual Aura - zigzags, moving blank spots, which luckily only lasted around an hour. As you may imagine, I am a bit rattled... male, 73, previously very fit, we don’t all have an easy time of it! The weakness in my legs comes and goes dramatically. Stress level pretty high in these times but the Migraines came after a relaxing time.

[Maisiek]

Hi , I’m similar/ on 5 1/2mg, getting the visual aura at times of stress: treat immediately with Anadin Extra and it goes away altho I’ve had nose bleeds, presumably because of the aspirin in them. As this is exactly the same as my previous migraines. I haven’t been too worried : looking forward to what the Pros say!

[DorsetLady PMRGCAuk volunteer]

Never having had a migraine, cannot compare - sorry. However my GCA wasn't as you describe, but as we know any visual disturbance is worrying if you have GCA.

Have you tried any other medication to see if it help - bearing in mind the contraindication with Pred.

If that doesn't help, maybe an extra Pred for a day or so to see effect of that.

[Roltuba]

Haven’t needed to try another med as has been short duration. Wife actually more concerned than I have been.... strange thing is, not had one after times of EXTREME stress, only after something nice (ish), and not had a migraine in over 50 years. Used to be set off by cross-country running competitively. Just read something suggesting migraine is an inherited condition but not aware of any rellies.

[CT-5012]

Mine were totally different, just a grey patch in vision lasting about two minutes then the pain, felt like my eye muscles were all working randomly and the pain was incredible. Hope this helps, all good wishes.

[123-go]

I used to have migraine headaches with stomach issues but not since retirement. My son had severe migraines in his teens. My mother also suffered having to lie down in a darkened room. She used to tell us she was having a bilious attack: not much known, I presume, about migraine in those times.I wonder if you're allergic to ingredients in 'something nice (ish)'?

[Maisiek]

Migraines tend to come on AFTER the stress is over for me 😰

[SheffieldJane]

However familiar this feels, I would still want medical opinion just in case and as soon as possible. There is nothing to lose and possibly a great deal to gain. Good luck.

[Janstr]

I also get the visual aura you describe before a migraine. When I realised my migraine medication contained a lot of caffeine, I started having double shot Black coffees which would often zap the symptoms & suppress to the headache. ( I normally drink decaf). When I got GCA the headache was like a low grade migraine, which lasted for over 2 weeks, & coffee & paracetamol wouldn’t make it go away

[Joannarosa]

Hi - its alarming, isnt it? A month or so ago, I got the migraine aura with no headache, multiple times a day for a couple of days. I've had isolated episodes for years, maybe one every couple of years ago, but this was horrible. GP sent me to ED and I was seen by ophthalmology in case of GCA. Eventually no reason to think that was it...and the auras stopped. I'm 73, have had PMR for 4 years, stilton 14mg Prednisone...

[Skysey]

Hi Roltuba. Any visual disturbance is scary when you have GCA. I have had some episodes of zig zag lines in my peripheral vision which the neuroophthalmologist thinks could be migraine. However, these are not always accompanied by a headache. Thankfully I haven’t had one in a while. If it responds to paracetamol it is likely to be a migraine. The headache I got with GCA was intense and my temples were painful and sensitive. It did not respond to normal painkillers. However, everyone has different symptoms so if it continues it would be worth getting it checked out.

[Blackcat1M]

I had in August flashing zig zag,and what i called a spider going across my eye, went to the opticiands,and he said i had PVD, then only last week when i woke up a reall bad bout of ziz zag flashes, went again,second opion Visual Aura Miagraine,which she said happens to older people.They also said if it gets worse i could call them,they would give me a scan again,and if they thought it neccessary they would refer me to the hospital, they know i have PMR and are very good.

[Kayaksal]

As we see, everyone's experience with GCA seems to be different. I have had migraines with aura for many years (I'm now 75). But I started having double vision episodes 2017 and went to the eye dr. At that point he saw nothing new or unusual, but did prescribe and different Rx. That did not change anything for me. I went to him again in 2018 with the double vision getting worse. This time, when pictures of my eye were taken, there was evidence of the artery leading to the eye leaking! He immediately diagnosed GCA and I was off to see specialists, put on 60MG of prednisone, etc. My scalp was so tender that it hurt to even lay down on a pillow. I still had the aura headache but it came with pain in the eye and a tender temple. I guess what I am trying to say is that there were other symptoms than just the aura migraine that I had experienced for many years. From my perspective, I would say it never hurts to have symptoms checked to see if there is something new going on.

[Cally55]

I had one bad optical experience at the beginning, day after GP diagnosed GCA because of painful top of head, vision in right eye disappeared completely for about 2 mins. Fortunately I was already on high dose of prednisolone and it never happened again. Later on in my GCA journey I regularly got optical migraines, the zigzag lines you describe, specialists say nothing to do with GCA! However since I have got a lot better I haven't had another. My painful right eye and right sided headache has been dismissed as migraine by more than one of them because I never had raised markers, not surprising as I was on 12mg of prednisolone at the time!Try and get a blood test, you might have raised markers to take to a rheumatologist.

[Palme]

I am Nonna, age 79, diagnosed with PMR, in August, live in Texas, USA, treated by rheumatologist at University of Texas, SW, and been on 10 mg Prednisone. Heritage includes England, Scotland, and Sweden. In regards to migraines and GCA, I have had migraines since my teen years. My father had them too and called them bilious attacks because we would both get them eating certain foods; especially greasy. I have found I get them too from shellfish and sudden stress. I take Excedrin at first and then another in 15 minutes and then one more in another 15 minutes and that works. Includes zig zags, lightning, and broken glass visuals followed by pain. Lately I have had two bad ones after starting Alendronate for osteoporosis, which I had some of before PMR. These recent headaches included more blurry all over vision. After study and talking with a great neurologist, I decided to treat them as migraines and not go to emergency. She said GCA headaches are different and specific: along the temple, or within the head, or involving jaws, and including a different type of visual disturbance—meaning lack of vision, visual field fogging, and a sense of thus being new and different. So this is as far as I have come. I believe I will know by my instincts and by the Lord when I should go to ER. May the Lord bless you and keep you.