New symptom? Aura?

[Nikkicch]

I am concerned. Today I had what I can only describe as an aura. Two oval opaque objects in my line of vision. They had rainbow colored jagged ^>< outlines that were flashing like a strobe light. I would say that about 80% of my field of vision was compromised. It lasted for about 45 minutes. It ended with me getting a cluster. I've been getting clusters chronically for over 10 years. This has never happened before. Anyone have anything similar happen to them? Thank you!

[Nikkicch]

Anyone out there?

[spiny]

Hi Nikkicch!

 

Welcome to the group.

 

I have not read of this occurring, but that certainly does not mean that it hasn't. Many get migraine and CH. Some with migraine only have the aura, not the pain. I have a daughter with this condition. She does not have CH, just aural migraines. Did this only occur in one eye or both?

[Nikkicch]

Thank you for your response and for welcoming me.

As for this episode, I've never experienced anything like it. It was in both eyes. Any ideas?

Have a good day

[hyphen]

Hello Nikkicch,

 

What you describe seems pretty close to ophthalmic migraine. I'm an episodic cluster head and I have them also, but they never happened at the same time together.

But who knows we're all different. What I know from ophthalmic migraine which I have since childhood is that you have to close your eyes and stay in the dark or low light until the visuals effects goes away. (it can happen in one eye, both eyes, even change from one to the other) That way the headache that comes after is very less stronger than if you keep your eyes open. Without doing it, I remember really debilitating migraines who could last 4 to 8 hours. Usually those little bastards happen when I'm really stressed.

I'm really sorry to read that they mix with cluster in your case.

Hope it could help.

[CHfather]

Thank you for this observation, hyphen.  I know almost nothing about this topic.  Opthalmic migraine is also referred to as ocular migraine, or retinal migraine.  According to a 2001 survey of more than 1,000 cluster headache patients, and some other surveys, as many as 20-plus percent of people with CH experience auras.  I don't know enough (as I've said) to say whether what you have described is similar to the kind of aura that these people in these studies reported.  I'm going to try to attach that big study, but I haven't had any luck creating attachments at this new board.  It's Rozen and Fishman, "Cluster Headache in the United States of America: Demographics, Clinical Characteristics, Triggers, Suicidality, and Personal Burden."

[Nikkicch]

Thank you both.

Hyphen, my cluster headache came after the aura went away. I'm sorry to hear that you've experienced this since childhood. I can't imagine having something like this happen as a child! It was scary. I didn't know if I would be able to see again. I'm divorced and was home alone with my 9 year old. Not a good feeling.

CHfather, I am definitely going to read the study. It sounds interesting. Thanks for the suggestion.

It hasn't happened since. I'm hoping it was a one time only thing. A friend suggested dehydration.

Few interesting things to add to the quest for answers.

1. My brother also get clusters, chronically like me.

2. A few years ago I went for an eye exam. Once my eyes were dilated I was unable to focus the eye on my cluster side. I couldn't even make out the largest letters.

Have any studies been done to see if there is an increase of cerebral spinal fluid at the base of the brain?

[Nikkicch]

Hyphen, I forgot to mention something. After it started I went into my bedroom and laid down with my eyes closed. A few minutes later I opened my eyes and it seemed a little better initially but went right back. So I thought if I closed my eyes longer it might get better. So I closed my eyes when I opened them back over 30 minutes had passed. I didn't fall asleep though. It's almost like those 30 minutes passed in less than 5. Do you know if this is common? Thanks

[CHfather]

Nikki', do you have any interest in talking in general about what you do for your CH?  Plenty of people here with plenty of ideas and experience.  If not, it's fine of course.  If so, you might start that discussion on one of the private boards, like Share Your Busting Stories (even if yours isn't a busting story).

[hyphen]

Hello,
Thanks CHfather for this study information.

Nikkicch to answer your question, I would just say that during those ocular manifestations, being in the dark, I try to relax and breath to get control over the headache. It could create a sort of meditative state that make me lose track of time.
Luckily in a sense, my mother has those ophthalmic migraines too, so she knew what it was when it first happen to me. They happen only 3 or 4 times a year in my case.

 

Wish you the best

[Dennny]

I get aura's before about half of them. Sometimes sparkly diamonds falling other times fogginess around the edges. Same time of day, twice a day. I think it is barometric pressure change during the day/night cycle.

 

I went into remission for a year where I got aura's for about 15-20 minutes, but then no headaches.  Try to fool your brain, when you get an aura, slam a water or eat an apple. its placebo, but you may be able to fool your brain. I really believe it has helped me.

[sunjunkie80]

I was diagnosed in April of this year with CH and I have visual disturbances about 10-15 minutes before EVERY headache. Sometimes it is one eye, sometimes both. I have lost vision, had double vision, had visual disturbances (stars, lines, etc). I am very curious as to whether or not this means I have been mis-diagnosed with CH or I am one of the few that experience the aura before the headache. However, I did read something recently that stated that women who have CH, it is far more common for the CH to be preceded with an aura than it is with men that have CH. Interesting... 

 

Also, I have noticed that when I go from well lit areas to dark areas or vice versa, its a trigger and the more intense/disturbing the visual aura is correlates to the intensity of my headache..I usually know what I am in for based on my eyes.

[Nikkicch]

The aura I described was the only one I've had so far. So I can tell help you with that part. I can tell you that one of my triggers is light as well. I can't sit in a dimly lit room for long. Glares are a problem for me too...or glowing lights (like headlights or the green glowing numbers on my alarm clock). I'm not sure if this helps, but feel free to ask me whatever you'd like. I'm sorry for the delay in responding. Take care

[Nikkicch]

The aura I described was the only one I've had so far. So I can tell help you with that part. I can tell you that one of my triggers is light as well. I can't sit in a dimly lit room for long. Glares are a problem for me too...or glowing lights (like headlights or the green glowing numbers on my alarm clock). I'm not sure if this helps, but feel free to ask me whatever you'd like. I'm sorry for the delay in responding. Take care

[Nikkicch]

The aura I described was the only one I've had so far. So I can tell help you with that part. I can tell you that one of my triggers is light as well. I can't sit in a dimly lit room for long. Glares are a problem for me too...or glowing lights (like headlights or the green glowing numbers on my alarm clock). I'm not sure if this helps, but feel free to ask me whatever you'd like. I'm sorry for the delay in responding. Take care

[Ericles]

This thread is about a year old but I figured I would drop in my own 2 cents. I've had CH since puberty. Occular migraines started when I was around 30 or so. As others have described I have angular prismatic pulsing blind spots that I can see with my eyes closed. These seem to be a problem with my vision (brain) rather than the eyes themselves. I have these rarely when in a cluster cycle but I'll usually experience a few leading up to a cycle. I just now had my first occular issue in over a year (which prompted me to check the forum here and made it a pain to register as I couldn't see half my screen). This means I'm probably set for another cluster cycle this spring. I'll start another thread on that to track this cycle. 

If it is any use to the OP, these seem to be harmless but I agree they are definitely scary. I've had to pull over when driving and wait them out because I couldn't see the road. Fortunately they tend to not last more than 20 minutes and spread slowly. Today's aura started in the lower left side of my vision and spread to take out most of the left side which then faded to just corners of my vision. 25 minutes and it is almost completely gone. When I'm in a full-blown CH cycle these often include the nausea and the restlessness I get from the headaches but today there was no pain or nausea. Lucky me... I only went legally blind for a half hour. As for causes or triggers I've noticed changes to my sleep patterns and stress seem to bring these on but the primary thing I notice is I get them at work when I've been staring at my monitor too hard for too long. I suspect I'm breathing too shallowly or even unconsciously holding my breath so there could be an oxygen connection. If I ever learn more I'll be sure to share it here.