09-25-2012, 06:30 PM   #1
Jennifer's Avatar
Ocular/Visual Migraines

Anyone have these where you see auras of flashing light that aren't there (like when you look at a pool of water and the light at the bottom is bright and rainbow like and moves around) which could be anywhere in your vision and affects both eyes (when I cover up each eye I see it in both, I know seeing it in one eye is a more serious condition) and usually lasts for less than an hour (mine last for about a half hour)?

I do also get headaches usually on one side of my head that throb and make me sensitive to light so I guess those would be migraines instead of a regular headache. I'm starting to get one now since the aura in my vision is starting to go away. Now my eyesight in general seems pretty fuzzy.

Hard to find proper info on migraines and especially visual ones. I'm already on beta blockers (mentioned on webmd to possibly help with ocular migraines). Will be seeing my GP on Oct 1st for my B12 shot so I'll bring it up with her. This is my 3rd visual migraine this year within the past few months and I know I never had them before (I've seen twinkly stars before many times but those only last a few seconds so those never seemed like a big deal and are common). Wondering if anyone else has had them and perhaps something helped them so I can suggest things to my doc when I see her soon. Its pretty annoying to not be able to see for a while.

This also started before I started taking Humira so I know its not related to that.

Edit: Here's a video that shows what the visual auras look like: http://www.mayoclinic.com/health/migraine-aura/MM00659
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.
09-25-2012, 08:10 PM   #2
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Hello Crabby,
I get those, been having them extremely rarely for a few years. They are just part of my family history, my mother and brother also gets them. Since they are new on your side I would definitively try to see with you GP and maybe try getting an appointment with a neurologist if she judges it is relevant. Usually it is minor but since our brain is so complex, it worth being that little extra cautious in my opinion!

I hope you get your answers quickly
Take care,
Diagnosed UC 1999 then refractory CD.
Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

Currently taking: Omega-3, D-3, med-free for the time being.
~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

You'd like to chat and feel facebook would ease this point,
send me a private message and i'll do so =)
09-25-2012, 09:28 PM   #3
Jennifer's Avatar
I actually have a neurologist already. Was supposed to see him again but the office never called and I kind of forgot about him. I started seeing one because I was having issue with my back and left thigh going numb. They did a couple MRIs on my back and a nerve test on my lower legs along with some blood work then I never heard from them. Gotta call the office and figure out his name again so I can make an appointment with him too.

My dad told me that he's seen those same things before too so maybe it might run in the family. :/
09-25-2012, 09:56 PM   #4
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Crabby - I suffer from chronic migraine headaches - really bad. Once had one that lasted 3 months. Anyway, just wanted to mention that my neurologist put me on a preventative medicine called Nortriptyline and it stopped these migraines in its tracks. The only side effect I found was a bit of a dry mouth in the beginning, and it will give you a huge appetite. Just wanted to share.
09-29-2012, 07:24 PM   #5
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I get these. I looked it up online and I found it to be a migraine with aura. I don't get a headache just flashes of light. Looks like "snow" from the TV. I haven't gone to a Dr. becuase it doesn't hurt and lasts about 30 mins or so.
09-29-2012, 08:50 PM   #6
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I suffer with migraines Crabby and always have the visual aura. Zig zag flashing lights that slowly slowly enter my field of vision from the bottom right and then extend further and further into it before fading off. It takes about 20-30 minutes from start to finish and it is then that the migraine symptoms start. Bleh, I feel nauseous just thinking about it!

Migraines can be hereditary and there has been some suggestion that they may also be a part of the hereditary link between asthma, hay fever, eczema and sinus.

Good luck with the appointments and I hope you find something to keep the buggers at bay!

Dusty. xxx
Mum of 2 kids with Crohn's.
09-29-2012, 09:10 PM   #7
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Hi Crabby,

The docs think that my son may be getting abdominal migraines so I have been doing some research into the subject of migraines in general lately. Our pediatrician has recommended supplementing with a high dose of riboflavin (vitamin B2) as there is some evidence that it may help prevent migraines.



I also get visual migraines occasionally. They start as a blurry half moon shape in the left side of my vision. The blurry shape gets more pronounced and I can barely see for about half an hour. After that I have a bit of a headache. After the reading I've been doing I realize that I am LUCKY that the headache is only mild. Mine are usually triggered by bright lights (ie dazzling sunlight in my eyes) so I am careful to wear sunglasses when it is bright out.

My son has had some success with taking acetaminophen at a higher than normal dose just as the symptoms start. If he waits too long the acetaminophen doesn't work.

Good luck. I hope you can find a way to avoid them!
Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
09-29-2012, 10:14 PM   #8
Join Date: Apr 2011
Location: Georgia
I have had 3 episodes of ocular migraines in the past year -- nothing prior to that. I looked up the symptoms on the Internet and what I had fit the definition exactly. I recently had an eye checkup and discussed this with my opthamologist -- no cause for concern, just something weird that sometimes happens. But I've also been on Pentasa for over a year -- hmm, I wonder. . . . .
DX March, 2011 - Symptoms 5 years prior
Azathioprine (Imuran) - 200mg
Vitamin B12 - 1500mg
Slow Fe - 180mg
09-29-2012, 11:27 PM   #9
Jennifer's Avatar
Exactly. I've read that it's no cause for concern either but when it starts happening suddenly with no explanation and possibly frequently, how can you not think that there might be something more serious going on other than, "well, looks like I have to wait a half hour before I drive anywhere."

I've had the type that starts in the corner and gradually grows till half your vision is practically useless to the kind that starts in the center and looks like you must have looked at an intricate button on a shirt that the sun hit directly in your eyes and eventually clouds your entire vision to where you really can't see well at all. How is that not a cause for concern? :P
09-30-2012, 01:00 AM   #10
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Breathing exercise like pranayam will cure this problem of visual migraine permamnently. My father had it for years until he started Pranayam and bingo !! its gone forever..its been more than 10 years that he last had headache of any kind...currently am doing it and its been just a few months...I do not get visual migraines but I always suffer from migraine which is also not as severe as it used to be. there is no harm in trying it....its just a part of ashtang Yoga.
In remission since Diagnosis

Crohn's since Jan 2011.

No meds.
Diet as per ayurveda.
Vitamin D and B12 shots.
Currently experimenting with Probiotics, starting 2016.
And a large joint mad family, thus stress cant touch me.
09-30-2012, 01:07 AM   #11
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Thanks for the suggestion but honestly I wont try it. Sorry.
08-14-2013, 12:37 AM   #12
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My son gets migrains about once a month. He just rests in a dark, quiet place and they go away pretty quickly, but is there anything he can take? With school starting up again, he may not always be able to find a dark, quiet place to rest.
Three passions, simple but overwhelmingly strong, have governed my life: the longing for love, the search for knowledge, and unbearable pity for the suffering of mankind. Bertrand Russell
08-28-2013, 08:37 AM   #13
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hey. i also get them every evry month. due to menstrual cycles. i got one a couple days ago but is not time yet. dont know if its crohns or sinuses. i mine usually start with fuzzy vision then i start getting wierd flashing trippy colors and patterns that take over most of my vision.it always starts in my peripheral. mine are hereditary. mom and grandma had them. they both had anurisims and my mom had a avm which resulted in brain surgery that didnt turn out well. went to neurologist for mri to make sure everything was clear.it was.he prescribed a injection for migraines but found it didnt do much good and scary side effects like sudden death so i just deal with it now. my mom got them from caffeine and chocolate. dont know what my point was as im a a bit lethargic from im not sure think crohs flare. any ways i give you my support and hope your headaches gets better.
08-28-2013, 01:57 PM   #14
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Hi Jennifer. I was getting the migraines you describe fairly regularly when I was first flaring and before I started on any meds. I'd had a few when I was younger - usually triggered by strong smells like in the science lab at school ( paint smells brought them on for my Dad ) and occasionally I'd get them with the onset of my period.
The post Crohn's ones I think were brought on by food. I had them regularly when I went to my friend's house for Gaelic classes. She's a great baker and I'd pig out on cake and coffee, then half an hour later I'd get this sweeping lethargy, followed by the visual disturbances then the headache.
They went when I started experimenting with my diet and cutting out sugar, caffeine and wheat.
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
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Helen x
08-29-2013, 02:12 PM   #15
Jennifer's Avatar
My son gets migrains about once a month. He just rests in a dark, quiet place and they go away pretty quickly, but is there anything he can take? With school starting up again, he may not always be able to find a dark, quiet place to rest.
There are multiple treatments out there for migraines: http://www.mayoclinic.com/health/mig...ents-and-drugs Finding what works for your son may take a while. I know for me regular pain meds like Tylenol and Ibuprofen do not even touch the pain. I'm already on a beta blocker and am not sure if its helping or not as I started the beta blocker well before I started having these migraines and visual auras. It would be a good idea to talk with your son's doctor about trying one of the treatments out there for preventative treatment in that link I gave if regular Tylenol does nothing.

Grumbletum it would seem that my visual auras are triggered by lack of sleep. At least that's the only connection I've found. My grandpa has been getting them too lately and his may also be from a lack of sleep as he hadn't slept well for days leading up to the visual aura. For him and I we don't always have a migraine after seeing the aura. None of my doctors were concerned about it so no testing has been done yet.

Here's a video that shows what the visual auras look like: http://www.mayoclinic.com/health/migraine-aura/MM00659
07-15-2014, 01:53 PM   #16
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I had this happen to me today for the first time. I've had migraines before but never with aura.

Webmd said some triggers could be bananas, avocados, cheese, citrus, lack of sleep, illness, and exercise, among others. All of those apply to me! Hard to pinpoint which trigger did it.
07-15-2014, 02:21 PM   #17
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Have had migraines for 40 years - was on beta blockers until they stopped working am currently on Topiramate (Topomax) it is actually used to treat epilepsy but it works wonders on vascular migraines which are a bit like having a stroke - starts with the visual aura but for me its like looking through the bottom of a crystal glass then I lose all feeling on one side, get Asphasia, nausea and a blinding headache that can last for hours. Have been on the topiramate for 10 years.
07-15-2014, 02:41 PM   #18
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Wow - I have these also but never ran into anyone who had this too. The first one was about 1 1/2 yrs ago right after I had eaten at a Mexican Restaurant. I thought I had been given drugs in my food after seeing that odd zigzag.

I saw a colorful zigzag line in my vision field (one eye only), next one was just a zigzag line - clear or like vaseline colored. I don't have them much but went to a Neurologist who diagnosed it.

Good luck to all - not fun!!
Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
07-15-2014, 03:16 PM   #19
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Migraine And Crohn's Disease Support Group http://www.crohnsforum.com/showthread.php?t=64613
07-15-2014, 03:42 PM   #20
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I have had these before. My vision also gets very blurry when I read for a long period of time or if I am in the sunshine. I also had the numbness and tingling in my legs. That was transverse myelitis. The eye issues started later and I thought they were connected, although my neurologist said I should have no symptoms above the lesion in my spinal cord c2,c3. He sent me to an ophthalmologist. A few things I learned from that appointment- They worry more about issues that happen in one eye as opposed to both eyes. Optic neuritis usually never occurs in both eyes. Also, it is worrisome if you start to have issues seeing color. They gave me a colorblind test. You could take a look at some on the internet to get an idea if this is an issue for you. Also, if being out in the heat makes vision worse. Mine was worse in sunlight but really didn't have anything to do with over heating.

They gave me some eye drops and suggested I might have dry eyes. Over the last few years it has gotten better but my vision still gets blurry if I read outside. (both eyes)

I would try to get those MRI results. I had them of my brain and cervical and thoracic spine. This ruled out MS and ocular neuritis.
Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
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