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12-31-2015, 01:25 PM   #1
ronroush7
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Ocular migraines?

Maybe once or twice a year, in my eyes, I see something twirling around. I have been told it is called an ocular migraine. Does anyone else get this. Is it associated with Crohn's Disease?
01-01-2016, 02:49 AM   #2
DustyKat
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I don’t have IBD but I do suffer with migraines.

Ocular migraine can be just that, a visual disturbance as you have described, it resolves and that is it.

For others the ocular disturbance occurs and as it resolves the migraine headache commences. In these cases people often refer to the ocular side of things as an aura as it signals the onset of the headache to come. Not all auras are visual. I suffer with visual auras.

Migraines can be associated with Crohn’s and it is thought they do so due to the inflammatory process.
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01-01-2016, 03:04 AM   #3
ronroush7
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01-01-2016, 04:24 AM   #4
Agent X20
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Yes. I've had ocular migraines in the past. I only had three and not had one for five years (since I gave up work, so I suspect they may be stress-related).
They can be a bit scary at first, psychedelic swishy colours in your line of sight. But it faded after about 40 minutes and the doctor said it was nothing to worry about.
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01-01-2016, 06:35 AM   #5
Jennifer
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I do see visual auras sometimes followed by a migraine and sometimes not. If you only see the aura in one eye then contact your doctor immediately as that could be a much more serious condition.

I made a thread about it back in 2010 when I started having them. Feel free to read other people's responses: http://www.crohnsforum.com/showthread.php?t=41463
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01-04-2016, 10:53 AM   #6
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I get ocular migraines 2-3 times per year. I get zig zag lines in my eyes and can't see in that area. They gradually move across my vision over about an hour. I get a very minor headache with it and am thankful I don't get the migrainous headache.
I got my first one after using odourless paint in an enclosed room….not sure if it was relevant though.
I haven't heard of an association with Crohn's but that doesn't mean a great deal!!!
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01-04-2016, 11:08 AM   #7
ronroush7
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01-05-2016, 06:19 PM   #8
Cat-a-Tonic
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If you only see the aura in one eye then contact your doctor immediately as that could be a much more serious condition.
Hey Jenn, I skimmed through your other thread as well but didn't see any more detail about this specifically. Any idea what serious condition it could be? I ask because I only ever get visual auras on the right side. Never ever on the left. My auras are different every time, too. A few times it's been variations of the psychedelic swirly stuff, once it looked like a Windows 95 screensaver (that multi-colored cube that turns into a ball and back into a cube? It looked just like that!). But other times, it's been more like, someone turned the lights off or on, but again only on the right side. Or once suddenly things got much more crisp and had more contrast, but only on the right. It's extremely disconcerting when it happens! My GP and GI are both aware and neither seems overly concerned (they both seem to think it's just another fun symptom of IBD, and I never got migraines/auras until IBD came along so I agree). That's slightly worrying that it could potentially be something more serious though.
01-05-2016, 08:04 PM   #9
Jennifer
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Hey Jenn, I skimmed through your other thread as well but didn't see any more detail about this specifically. Any idea what serious condition it could be? I ask because I only ever get visual auras on the right side. Never ever on the left. My auras are different every time, too. A few times it's been variations of the psychedelic swirly stuff, once it looked like a Windows 95 screensaver (that multi-colored cube that turns into a ball and back into a cube? It looked just like that!). But other times, it's been more like, someone turned the lights off or on, but again only on the right side. Or once suddenly things got much more crisp and had more contrast, but only on the right. It's extremely disconcerting when it happens! My GP and GI are both aware and neither seems overly concerned (they both seem to think it's just another fun symptom of IBD, and I never got migraines/auras until IBD came along so I agree). That's slightly worrying that it could potentially be something more serious though.
"A migraine aura involving your vision will affect both eyes, and you may see:

Flashes of light
Zigzagging patterns
Blind spots
Shimmering spots or stars


Retinal migraine:

Sometimes, ocular migraine is used as a synonym for the medical term "retinal migraine." A retinal migraine is a rare condition occurring in a person who has experienced other symptoms of migraine. Retinal migraine involves repeated bouts of short–lasting, diminished vision or blindness. These bouts may precede or accompany a headache.

A retinal migraine — unlike a migraine aura affecting vision — will affect only one eye, not both. However, most often, loss of vision in one eye isn't related to migraine. It's generally caused by some other more serious condition. So if you experience visual loss in one eye, be sure to see an eye specialist."
http://www.mayoclinic.org/diseases-c...e/faq-20058113

"Retinal migraine

Vasospasm of the retinal circulation or ophthalmic artery is thought to be the cause of the amaurosis of ocular migraine.1–5 Ischaemic optic neuropathy6 and permanent arcuate scotomas3 may occur after ocular migraine and retinal vascular occlusions have been reported in conjunction with cerebral7 and ocular migraine.5,8

Retinal vasospasm may be associated with underlying systemic diseases such as SLE5 and antiphospholipid syndrome.5,9 In older patients it may be associated with giant cell arteritis, polyarteritis nodosa, and eosinophilic vasculitis.1 Other associated haematological abnormalities include low protein C and S levels and positive antinuclear antibodies.5"
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1772006/

"Vasospasm can have many different causes and can occur in a variety of diseases, including infectious, autoimmune, and ophthalmic diseases, as well as in otherwise healthy subjects. We distinguish between the primary vasospastic syndrome and secondary vasospasm. The term "vasospastic syndrome" summarizes the symptoms of patients having such a diathesis as responding with spasm to stimuli like cold or emotional stress. Secondary vasospasm can occur in a number of autoimmune diseases, such as multiple sclerosis, lupus erythematosus, antiphospholipid syndrome, rheumatoid polyarthritis, giant cell arteritis, Behcet's disease, Buerger's disease and preeclampsia, and also in infectious diseases such as AIDS. Other potential causes for vasospasm are hemorrhages, homocysteinemia, head injury, acute intermittent porphyria, sickle cell disease, anorexia nervosa, Susac syndrome, mitochondriopathies, tumors, colitis ulcerosa, Crohn's disease, arteriosclerosis and drugs. Patients with primary vasospastic syndrome tend to suffer from cold hands, low blood pressure, and even migraine and silent myocardial ischemia. Valuable diagnostic tools for vasospastic diathesis are nailfold capillary microscopy and angiography, but probably the best indicator is an increased plasma level of endothelin-1. The eye is frequently involved in the vasospastic syndrome, and ocular manifestations of vasospasm include alteration of conjunctival vessels, corneal edema, retinal arterial and venous occlusions, choroidal ischemia, amaurosis fugax, AION, and glaucoma. Since the clinical impact of vascular dysregulation has only really been appreciated in the last few years, there has been little research in the according therapeutic field. The role of calcium channel blockers, magnesium, endothelin and glutamate antagonists, and gene therapy are discussed."
http://www.ncbi.nlm.nih.gov/pubmed/11286896


One thing that I was told when I was dealing with these was to always check if I only saw it in one eye or both by closing each eye to see if the vision is affected in both. If it's only in one eye then I was told that they would need to figure out the underlying cause.
01-05-2016, 09:04 PM   #10
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i get retinal migraines, only once a year or so thankfully.I loose all perpherial vision in my left eye, and about half an hour after it starts I get a knock-me-out migraine. The full kit-n-caboodle; pain, sensitivity to light, nauseau, vomitting, sensitivity to noise ans smells, etc. I had a bunch of tests after the first one, and it was determined that I just have migraines. I only ever get them after "the perfect storm" though- last one was the day after I took the GRE's.
01-06-2016, 04:57 PM   #11
Cat-a-Tonic
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Thanks Jenn, very interesting. I think I'm similar to Kitten_Owl, I think I just have migraines without any sinister underlying cause (or, the underlying cause for me is IBD, since both the IBD and migraines started at the same time). And amitriptyline seems to prevent them for the most part, I haven't had a migraine with aura in awhile.

Kitten_Owl, your retinal migraines sound similar to mine. I don't get quite as severe symptoms as you - but anywhere from 15 mins to 4 hours after the aura, I get a lot of sensitivity to light & sound, some nausea (no vomiting so far, the nausea has stayed reasonably mild), and some head pain. It usually only is bad for 1-2 hours or so (I need to lie down in a dark, quiet room for that long) and after that I am usually okay to get up and be in a room with a reasonable amount of light and sounds again. And yes, you read that right, it once took 4 hours between the aura and the actual migraine. I had the aura at about 10 AM, then nothing. I even forgot about it!... until 2 PM when it hit me. Of course, I was at work at the time and could not go home sick, because I was already covering for someone who had gone home early that day. That was not a fun day! I just had to tough it out.

Okay, another migraine question for everybody - does anyone else get more than 1 type of migraine? I also get what I think are sinus migraines. It starts with my sinuses feeling weirdly full/stuffy, then the pain starts. It begins in my sinuses, wraps around the back of my head, and goes down into my neck. I get these headaches fairly often and they can be horrendously painful and can last up to 5 days. Certain meds seem to trigger them (when I was on Entocort, I had a ton of these migraines, including I had 3 of the 5-day-long ones 3 weeks in a row - literally I had about 2 days in between each one of feeling okay-ish and then another one would hit). I am pretty sure they're migraines - I don't get auras with these, but I do get sensitivity to light, sounds, and sometimes smells, I get nausea, and they are incredibly painful. Fortunately the last few that I've had have only lasted about 2 days each, rather than 5. I've only found a few things that help somewhat - if I take Tylenol Sinus and Benadryl together, that sometimes takes the edge off. A heating pad on my neck sometimes helps a bit. And, weirdly, crying helps a little. It seems to relieve some of the sinus pressure.
01-06-2016, 05:12 PM   #12
ronroush7
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I just get the twirling lights. I don't usually have any pain .

01-07-2016, 01:34 AM   #13
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I see stars now and again maybe its my bp coz my bp the last time were 180/101 but i get migrains quite often last migrain i had my neck got so sore the day before it started then my eyes get sore, head feels heavy , nuasea once had a migrain for a week
01-07-2016, 03:26 AM   #14
Jennifer
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Okay, another migraine question for everybody - does anyone else get more than 1 type of migraine? I also get what I think are sinus migraines. It starts with my sinuses feeling weirdly full/stuffy, then the pain starts. It begins in my sinuses, wraps around the back of my head, and goes down into my neck. I get these headaches fairly often and they can be horrendously painful and can last up to 5 days. Certain meds seem to trigger them (when I was on Entocort, I had a ton of these migraines, including I had 3 of the 5-day-long ones 3 weeks in a row - literally I had about 2 days in between each one of feeling okay-ish and then another one would hit). I am pretty sure they're migraines - I don't get auras with these, but I do get sensitivity to light, sounds, and sometimes smells, I get nausea, and they are incredibly painful. Fortunately the last few that I've had have only lasted about 2 days each, rather than 5. I've only found a few things that help somewhat - if I take Tylenol Sinus and Benadryl together, that sometimes takes the edge off. A heating pad on my neck sometimes helps a bit. And, weirdly, crying helps a little. It seems to relieve some of the sinus pressure.
I haven't had those last for 5 days (sounds miserable) but I have had them last 2-3 days. Similar to where they start up front then spread along the side of my head and then into my neck. I take Imitrex for those (I'm having a mild one right now actually) and I like to use a heating pad on the back of my neck (helps a lot for me). If those aren't cutting it then I use caffeine (Coke or Pepsi etc I haven't tried green tea or caffeine pills) and eat some high % dark chocolate.

Have you ever had a Sensory Aura before (thinking about odd headaches made me remember this one)? I've had one a couple of times where my mouth and left arm started going numb. Was really weird. This video talks about the different kinds of auras: http://www.mayoclinic.org/diseases-c...a/vid-20084707
01-07-2016, 10:53 AM   #15
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I haven't had a sensory aura, no. That sounds terrifying! When I get the weirder auras, like the ones where the lights are turned off/on on one side, it's worrying enough to the point where I get slightly afraid that I might be having a stroke. I think if I got numbness on one side like you described, I would definitely think it was a stroke! That's horrifying!

I don't really do caffeine (no soda/coffee), but I will have a small bit of chocolate sometimes during a migraine and it seems to help a bit. I can't take Imitrex, I have tried it but it causes rebound migraines. One day I had a right-sided aura and felt the right-sided migraine come on, so I took an Imitrex, and although it cured the right-sided migraine, the next morning I woke up with a left-sided migraine! I never get those and it was really disconcerting and not fun. Apparently it was a rebound migraine from the Imitrex. So yeah, no more Imitrex for me.

Oh, I did get myself a TENS unit recently, haven't tried it out yet. I know that you're not supposed to stick the pads to your head, but I was thinking I could try it on my neck pain during my next sinus migraine. So that will be an interesting experiment, will see if it helps at all.
01-08-2016, 12:31 AM   #16
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Just signed up for this forum. Searched the forum a few months ago to find out how fustulas were dealt with. Then I saw this ocular migraine class. I've had ocular migraines for about 15 years. Sometimes I get a headche and sometimes I luck out and just get the visual disturbances for 1 to 3 days. Never dreamt they could be related to CD. Just thought they were weird. Had never heard of anyone else with them.
01-08-2016, 12:34 AM   #17
ronroush7
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Welcome to the group. My head never hurts just get the psychedelic lights. By the way, did you see the section titled Fistulas, Fissures and Abscesses?

01-08-2016, 02:31 AM   #18
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Ron, yes I did read a bunch of posts and I think I'm a little more informed.
It's amazing how many things happen and they end up being related to this yucky disease.
I Just try & take it a day at time and deal with things as they come.
01-08-2016, 07:20 AM   #19
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Have you ever had a Sensory Aura before (thinking about odd headaches made me remember this one)? I've had one a couple of times where my mouth and left arm started going numb. Was really weird. This video talks about the different kinds of auras:
This is interesting. I read this thread the other day, and for the first time read about a sensory aura and it makes me wonder if it explains something.

About 20 years ago, about the same time I started getting abdominal pain I noticed the weird sensation of numbness down my right side. Slightly alarmed I saw a doctor who used something to test sharp and dull all down my arm and leg, which I was able to feel. He said there was no evidence of any nerve damage or of anything actually wrong. A blood test showed my B12 was low, but he didn't think that was important.( If he'd put that together with my lower right abdominal pain perhaps I'd have been diagnosed 20 years earlier).

I didn't pursue it, and it would happen every now and again over the years, and sometimes the left side too, but never got worse and with no actual loss of feeling. I noticed that it would coincide with feeling very tired, and also I get a lot of sinus pain and headache (just like Cat says - maybe it's a cycling thing) and I wondered if that was related too. In recent years it seemed to go away completely.

A few months after my surgery in 2014 I was generally doing quite well, but then one day really crashed. I felt unbelievably tired, just like my head was full of fog and could barely function and again got this weird feeling of numbness down one side. Lying down in a darkened room for a couple of hours was the only relief. I thought this might all be because of B12, and the doctor gave me extra injections, but now I'm wondering. Was this a migraine? It never really occurred to me before.
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01-12-2016, 11:50 AM   #20
Cat-a-Tonic
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I saw my GP on Friday and I offhandedly mentioned something to him about the sinus migraines that I've been getting. He's concerned enough about those that he wants to check on my sinuses to see if there's anything going on like chronic sinusitis that would be causing those. So, I'm having a CT scan on my sinuses on Thursday afternoon. Wish me luck!
01-12-2016, 04:42 PM   #21
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I've had ocular migraines in the past (pre-Crohns). My optician said it was nothing to worry about, just something that happens in middle age.
01-15-2016, 06:05 PM   #22
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Well, my CT scan was totally normal. No answers about my sinus migraines. Hmph.
01-25-2016, 07:47 PM   #23
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I've had ocular migraines in the past where I've completely lost my peripheral vision in both eyes. Plus, if I happened to be reading, print is lost in certain areas. Went to the ER and they said it's stress related, sometimes physical stress related, too.
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