Migraine or GCA?: About half an hour ago my... - PMRGCAuk

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Migraine or GCA?

SheffieldJane profile image
43 Replies

About half an hour ago my eyesight began to behave as if I had been dazzled by a bright light. This is obscuring my eyesight a little. I have a dull prickling pain on my left temple. It is reminiscent of migraine, I haven’t had one for years. Coincidentally I am due at the hospital for an NHS eye check tomorrow at 12 noon. I am trying to decide whether it is a GCA warning or a migraine and whether I should take action. It doesn’t seem to be getting worse. I have been very tired today. I have plenty of Prednisalone in the house. What should I do?

I had a head MRI about 18 months ago but no test for Cranial GCA for about 4 years when non Cranial GCA was diagnosed.

Any thoughts?

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SheffieldJane profile image
SheffieldJane
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43 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

That’s disconcerting, and don’t think we can categorically say it is GCA. If it is similar to migraine attacks you have had in the past it could well be that. Did tiredness precede your previous attacks? Do you have medication or strategies that have help previously- if so I’d be inclined to try those initially.

If they don’t help then maybe consider Pred, but you do need medical advice, although NHS 111 may be busy bearing in mind strike action .

Please let us know how you get on…and best wishes.

SheffieldJane profile image
SheffieldJane in reply to DorsetLady

Thanks DorsetLady. I have taken an extra 5 mgs of Pred that doubles my dose. No sleep for me tonight. I have been fasting, following yogabonnie’s advice for a diverticulitis flare.

I’ll let you know. X

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SheffieldJane

Ahh… Maybe have a look at this -

verywellhealth.com/how-fast...

SheffieldJane profile image
SheffieldJane in reply to DorsetLady

That’s useful, the episode only lasted an hour, it’s only the possible GCA connection that alarmed me. I will mention it at the diabetic eye check tomorrow and see my own Optician for a thorough eye check. The extra 5 mgs seemed to help as soon as it got into my system. I think my 5 mgs dose and plans to taper might be wishful thinking.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

HOW are you fasting?

SheffieldJane profile image
SheffieldJane in reply to PMRpro

Clear liquids only, then non clear liquids tomorrow, then soft foods, then normal meals. Yogabonnie said that it was sufficient to heal her diverticulitis flare. I am being driven mad by constant, gnawing abdominal pain. Pain free when I don’t eat.

yogabonnie profile image
yogabonnie in reply to SheffieldJane

ah.... I get visual migraines with aura...they subside in about 20. min... often if I am having just clear liquids.. or a major change in diet good or bad...... I should have mentioned but didnt think. You can eat MORE ...a lot. just the clear, then soft..etc... Hope I havent steered you wrong. glad you have eye check tomorrow!!! ox

PMRCanada profile image
PMRCanada in reply to yogabonnie

I follow the same protocol shared by my surgeon, following a diverticulitis flare. Was told it’s important to allow your digestive system to rest (via fluids and then soft foods), before introducing solid foods and fiber.

SheffieldJane profile image
SheffieldJane in reply to yogabonnie

It was bliss to have a peaceful abdomen for a few hours. If that was a migraine it was a minor one. I am grateful for your advice - just a bit freaked out by visual symptoms. Normal today, 💖

yogabonnie profile image
yogabonnie in reply to SheffieldJane

you might go longer with soft foods. etc.. if it hurts dont stop the liquids but be sure and get enough calories in you. thinking about you and keep us posted! xo

Stills profile image
Stills in reply to SheffieldJane

Sending you a feel good hug 🤗 sorry to read about your eyesight worries. I’d be interested when you feel better, to hear about diverticulitis. I’ve got something going on and don’t feel normal. I’m concerned it’s ovarian cancer but know it mimics many things, diverticulitis is in my family and I think it’s something I should consider. May I ask what the symptoms are?

Hope eye test ok today.

SheffieldJane profile image
SheffieldJane in reply to Stills

My symptoms also mirrored Ovarian cancer. I had a scan, internal and external that discounted ovarian cancer. My symptoms include gnawing lower, abdomen pain, with the centre of the pain in the lower right quadrant ( like an internal boil or abscess). Bloating, diahorrea alternating with difficult bowel movements. Much worse for eating bread, pastry, black lentils, mushrooms, chilli . Meat, Tomatoes, citrus. A small glass of wine would cause a flare of several days. Diverticular disease, a small hernia, some ‘ insignificant’ scarring of the pancreas , internal haemorrhoids and a tiny amount of blood at the base of my oesophageal area were diagnosed following a colonoscopy, an endoscopy and two camera endoscopies for upper and lower GI tract. My symptoms became worse when on Actemra/Tocilizumab but didn’t improve when I stopped. I have been told that diverticulosis can cause few or no symptoms and is present in most older people. IBS has been mooted in my case, but it is not a cramping pain that causes urgent diahorrea. Following these tests I feel that the GP is no longer interested. I have been prescribed omeprazole for 8 weeks and a stool softener. No real improvement . Fasting provides relief - then this migraine type aura.

Stills profile image
Stills in reply to SheffieldJane

Thank you SJ, that’s a detailed and useful reply. So far I’ve had a gastroscopy (I think it was pointless) checking for liver or ovarian cancer….. I’ve had a 4 months in omeprazole. What you describe had some similarities although I have randomly spread abdominal pain, bloating, gaseous, lower back period type pain , increase in normal vaginal fluid and darker, inner thigh pain and terrible hip bone pain and lost 16 pounds in 3 weeks but stable now. Combined with RD symptom’s it’s difficult to be objective. I think I’ll just watch and edit for a few weeks before trying for an appointment. Thank again for sharing your experience.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

That's fair enough - but as has been pointed out overnight, fasting often causes headache at first and you do need to keep fluid and blood sugar up.

Blearyeyed profile image
Blearyeyed in reply to SheffieldJane

Did you get this head pain before or after you started fasting? If you have had Migraines before fasting can trigger them. I don't usually stop all food for more than 24 hours on my fasts for Pancreatitis or Diverticulitis, and I usually get an electrolyte to prevent the digestive treatment triggering a flare in my Migraines.

I usually just eat 2-3 small portions of my probiotic live yoghurt with a little honey on the second day. Then I bring in a few plain foods on the third, and have a more basic meal plan for the rest of the week.

It sounds like a Migraine with Aura , especially if it only lasted an hour, and if it felt similar to ones you have had before, but obviously you need to discuss it at your appointment today or with your GP because you can't be too careful. Getting the eyes checked will rule out other causes of inflammation that could cause a Migraine as well.

Pred can also be a treatment for certain types of Migraine but it's usually taken for shorter periods in small doses .

If it turns out to be Migraine and they begin to happen more frequently or it wasn't just triggered by the fast you will probably benefit from discussing a more suitable medication for future attacks.

SheffieldJane profile image
SheffieldJane in reply to Blearyeyed

That is helpful Blearyeyed. My eye test is because I was once diagnosed with pre-diabetes 2 and am still in the system. Not sure if they can expand the eye examination. Everyone works in their own tramlines these days. Electrolytes are a good idea and your programme sounds good. This was my first Migraine in 20+ years. I may have been dehydrated, I am bad about water even though I always have a glass beside me and take it out with me. I also need to drink more of it.

yogabonnie profile image
yogabonnie in reply to SheffieldJane

Re dehydration.....I am bad about water..I told a nurse I never feel thirsty any more and she said quite bluntly Natures way of killing you off. !!! haha. I loved it. now I put a glass of water in every room I will go in during the day..and when I am in there at some point I make sure that I drink some or all of it. and it works. I do it first thing. no coffee until glasses of water in place! reading a great book called Atomic Habits. coffee is my reward. ! and realized that just having 'drink more water' on my mental or physical list doesn't cut it... have to have an actual plan! and I think of myself as a water drinker!..not someone who needs to drink water. So at the end of the day I have 48-64 oz.

Blearyeyed profile image
Blearyeyed in reply to SheffieldJane

Very possible, I'm really careful with water and I can still get caught out on a hot or busy day.Dehydration is the most common Migraine trigger after general stress. It's even more important to drink enough in a fast because you need the extra water to help remove the toxins you are removing more quickly or that also makes you feel flu like and causes headaches.

It takes a while to get past the point if feeling like you are also drinking before you get into a good hydration pattern. It did for me.

Take care , Bee

SheffieldJane profile image
SheffieldJane in reply to Blearyeyed

Thanks both! It was a hot muggy day as well. I am drinking filtered water as we speak. Xx That experience was a big fright.

musicality profile image
musicality in reply to DorsetLady

Tell them at your eye appointment - they may be able 2 help. Be cautious about using Pred until you've spoken 2 them or a specialist nurse in Rheuma clinic if you have one. If you have a good GP who listens and is knowledgeable about this condition they may be a good bet if you get nowhere with the eye people. Best of luck

nuigini profile image
nuigini

Prior to PMR I had occasional migraines that began with an aura where I would lose partial sight and other weird light shows prior to the onset of pain. For the first 5 years on prednisone I never had a headache of any kind and then suddenly they reappeared occasionally. I was very worried about GCA, but over-the-counter pain meds handled the headaches, which could be quite severe. I now have meds to take when the aura begins, which usually halt the development of the headache.

I've noticed a possible pattern with mine. It may be when I haven't had enough fluids the day before, often after bowel issues related to celiac disease or microscopic colitis. I often drink a bit of pedialyte (replenishes liquids and electrolytes) in these situations as well.

Perhaps your body is reacting to the fasting,

SheffieldJane profile image
SheffieldJane in reply to nuigini

This does sound similar to what I experienced. I might try the pedialyte or similar. Thanks!

nuigini profile image
nuigini in reply to SheffieldJane

Concentrate on water for hydration and don't overdo the electrolytes.It's a delicate balance. :-)

SheffieldJane profile image
SheffieldJane in reply to nuigini

I am notoriously good at delicate balance ( not).

PMRCanada profile image
PMRCanada

Sorry to hear of your new symptoms. Hope you get more insight and direction tomorrow SJ. Keep us updated.

Pris80 profile image
Pris80

It sounds very much like Silent Migraine, which I get frequently when I am stressed. A small area in your vision in both eyes becomes obscured by a bright sparkling light ball which grows until it obscures about half of your total field of vision and then gradually shrinks and disappears. I just sit down, close my eyes, and try to relax until it goes away. Usually takes about half an hour. It's one of the reasons I have given up driving as I never know when it is going to happen.

SheffieldJane profile image
SheffieldJane in reply to Pris80

Yes it was just like that. I couldn’t look at a screen.

yogabonnie profile image
yogabonnie in reply to SheffieldJane

definitely a visual aura migraine. The vision part usually goes away within 20 min.. And often no headache. But when I get one I take a tylenol and a cup of coffee. Really! recommended by a doc. And OldPenny has nailed it in that photo!!!

SheffieldJane profile image
SheffieldJane in reply to yogabonnie

It is exactly what my vision was like. No really bad headache either. The woman who did my eye tests used those drops that enlarge the pupil and really sting. I couldn’t see properly for several hours, so I went to sleep with an audiobook read by Meryl Streep, she has a very soothing voice “Tom Lake” don’t ask me what it’s about. 😴

OldPenny profile image
OldPenny

To add my two-pennyworth, I have experienced migraine auras for years on and off and nearly always when I'm sickening for something. Also, I agree with nuigini re possible dehydration.

Fortunately, my following headaches are not acute and debilitating.

They just come on anytime during the day but most often morning or evening and look like this for me (see image).

The jagged annoyance moves across my vision over about 20 minutes and then disappears. Old Penny

Migraine aura image
Zebedee44 profile image
Zebedee44 in reply to OldPenny

Mine are exactly the same as that, usually before the pain and nausea set in. I have never worked out the trigger but the zigzag light usually precedes a long slow recovery in bed. I get far more migraine headaches without flashy lights and treat them with zolmitriptan, on repeat from the doctor.

9lives profile image
9lives in reply to OldPenny

Yes I have exactly the same aura. I had them checked out at the hospital a while ago as was getting more frequent and they confirmed ocular migraine x

SheffieldJane profile image
SheffieldJane in reply to OldPenny

That is exactly what it was like. It was only the thought of GCA the ever present threat that scared me.

SheffieldJane profile image
SheffieldJane

5 mgs of extra Pred may have shortened the episode.

Many thanks for your valuable insights! X

Amkoffee profile image
Amkoffee

This might be what they call an optical migraine. However it could also be a stroke so prompt medical attention is called for in this situation.

SheffieldJane profile image
SheffieldJane

GCA is a kind of stroke.

I had a thorough eye check today and all seems well but she’s put me on an amber alert whatever that means. More NHS checks I guess. We have an eye casualty at the local hospital that I have been advised to ring if it happens again.

yogabonnie profile image
yogabonnie in reply to SheffieldJane

try not to worry. Stress triggers too sometimes. I have had them back to back only a few times. I also take magnesium which was anecdotally recommended. but that also helps with vit. D absorption and bowels. so might try it!

SheffieldJane profile image
SheffieldJane

Thanks yogabonnie, I’ve got those to take. Everything is calm today because “ it got me” I expect. I really appreciate the support. X

Broseley profile image
Broseley

I had exactly the same thing the other day. Very scary. It was to the left of my vision, so looking directly at the telly was fine, but the dazzle effect was distracting. I tried covering each eye in turn, there was no difference, so I concluded that it must be a brain thing rather than an eye thing. I stopped myself panicking and resolved to phone NHS direct but after 20 minutes it went away. I had no headache or any other repercussions.

SheffieldJane profile image
SheffieldJane in reply to Broseley

Yes it was just like that. I was reassured that it was both eyes too but a muzzy sort of pain was in my left temple, I miserably concluded that was the eye that would lose sight. Fortunately I had all of you to stiffen my backbone. Fine today, well our level of fine.

Broseley profile image
Broseley in reply to SheffieldJane

Yes it's difficult not to panic where your eyesight is concerned, and these things always happen on a Sunday or Bank holiday so you can't go to the optician. I wouldn't want to have to go to A&E again after my 24 hour stint there last time. I have decided to see if it goes away on its own within say 2 hours and if not, then get expert help. But it's been fine ever since. I really felt as if I'd been staring at a bright light.

PMRpro profile image
PMRproAmbassador in reply to Broseley

In the UK, many of these opticians ARE available over the weekend.

Broseley profile image
Broseley in reply to PMRpro

Not where we live. The emergency optician is only open on normal work days.

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