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Medical Forum / General / Vision / January 2007Is what I'm experiencing an Ocular Migraine - I'm quite worried!
Hello all, I'm experiencing some frightening symptons. Went to the ER one night - they referred me to an opthamologist who was stumped - and he referred me to a specialist neural opthamologist who was stumped - and he has now referred me to a neurologist at the Stroke Prevention Clinic. I'm currently awaiting that appointment. There are quite a few details, but I'll present the typical episode I experience. I have never been an experiencer of migraines. Out of the blue I'll now occasionally bend over to pick something up, and I'll feel a bit of a head rush sensation. I'll feel pressure in my eyes and get sort of star bursts in my left eye (always the left) Within a few moments, my vision in that eye will go completely grey (as though looking through a curtain - totally blind except for perhaps a brighter area if I look directly at a strong light source. Within 5-15 minutes, vision slowly returns. Initially in patchy grey scale, and eventually colours come back and all is totally normal. No pain through any of this. Left with a feeling of pressume in the eye that goes away in an hour or two. There are a few variations. Sometimes I have a mild and pressure-like headache after. A couple of times an episode has been initiated by adrenaline rush when I suddenly worry about something. A few times I've been able to straighten up or calm down quickly, and the event doesn't progress beyond just the star bursts for a few minutes. If I'm helping the kids and bent over a lot....sometimes I can feel a bit of a ache developing in my head such that I feel I might have an episode.....and then if I've not stopped bending over, boom....I'll go blind a few bend overs later. Used to happen perhaps once a month beginning maybe 8 months ago. Now I'm having some sort of event at least every 2 weeks, and have frequent headaches resistant to Tylenol. Have had a blood test, a carotid artery ultrasound, and an orbit ultrasound. All normal. Am otherwise healthy and a 39 year old male. The neural opthamologis said ocular migraines were his most common referral and this wasn't it. Initially he said because 'bending over' didn't make sense as an initiator. But when I had episodes without bending over, he changed to say that an ocular migraine's visual auro wouldn't resolve in <20 minutes - and it can be as short as 5 miinutes for me. Spontaneously going blind is obviously quite terrifying and I'm very concerned about my health and if all this could be a tumour or lead up to a stroke. Am doing all I can through the health system.....but 3 weeks was the quickest the Stroke Prevention Clinic could schedule me. I'd REALLY appreciate any input from people if you think this may in fact be an ocular migraine. And IN PARTICLUAR I'd love any comment if people have heard of ocular migraine's being initiated by bending over!! Thanks so much for any input! Please reply to the group, or if you like my email address: maes_REMOVE-THIS_tro77@rogers.com Obviously remove the portion so the name reads maestro77. >Hello all, > [quoted text clipped - 52 lines] >people have heard of ocular migraine's being initiated by bending >over!! I get ocular migraine and it is nothing like you describe and no, it isn't caused by bending over. Have you had a brain scan? Ann >>Hello all, >> [quoted text clipped - 57 lines] > >Ann Hello Ann, Thank you for your response. No, not had any kind of brain scan. I'm hoping the neurologist will order an MRI or CT scan or whatever....and try to eliminate scarry possibilities like a tumour or weak vessels that could lead to a stroke.... or whatever..... Maestro77 schreef: Maestro, First of all, Internet isn't the place to diagnose your problem. It simply is not possible. Having said so and reading your story you might google on "retinal migraine" and "amaurosis fugax" In those cases it is strongly recommended to search for having attacks of amaurosis fugax especially when your are middle aged and having no history of migraine before (as your last specialist prescribed) Maybe this helps a bit, Jan (normally Dutch spoken) > I'm experiencing some frightening symptons. Went to the ER one night > - they referred me to an opthamologist who was stumped - and he [quoted text clipped - 56 lines] > maes_REMOVE-THIS_tro77@rogers.com > Obviously remove the portion so the name reads maestro77. Hello Jan, Thanks very much for your response. Please note I'm working my way through the medical system (current waiting to be seen by the neurologist), and am just using the internet to try to find possibilities to discuss with the doctors. Or locate any similar symptoms that perhaps have found a dignosis. Amsurosis Fugax and Retinal Migraine have given me two other topics to research. Amaurosis Fugax does not seem to fit my symptoms since it's often described as 'curtain coming down vertically'. That's not the nature of how my blindness begins. As well, I guess that possibility is why the neural opthomologist ordered a carotid artery ultrasound which came back normal. Still, thanks for the idea and maybe I can raise it with the neurologist when I see her in 2 weeks. I suppose Retinal Migraine might fit. But that might just be a different name for Ocular Migraine. The definitions of all these seem to be very loose. But again......I suspect if I'd used the term retinal migraine with my neural opthomologist he'd have similarly said it doesn't make sense that bending over would be such a significant initiator of a problem. Thanks! >Maestro77 schreef: > [quoted text clipped - 74 lines] >> maes_REMOVE-THIS_tro77@rogers.com >> Obviously remove the portion so the name reads maestro77. It's hard to answer questions about ocular Migraines because it's not a standard diagnosis under the International Headache Society's International Classification of Headache Disorders, which is pretty much the gold standard. Thus, the term is used differently by different people. If it is a Migraine it actually sounds like retinal Migraine, which is the one form that causes full, but temporary blindness in one eye. Here's an article: A Look At Retinal Migraine http://www.helpforheadaches.com/articles/WhatRetinalMx.htm  SignatureTeri Robert Author, Patient Advocate www.helpforheadaches.com www.MyMigraineConnection.com Author of, "Living Well with Migraine Disease and Headaches" For info: www.helpforheadaches.com. > Hello all, > [quoted text clipped - 58 lines] > maes_REMOVE-THIS_tro77@rogers.com > Obviously remove the portion so the name reads maestro77. Thanks for your assistance Teri! I have read that ocular migraine is not much of an "official" description and not formally recognized. Certainly I've found myself that descriptions of it vary widely over the internet. Sadly, with all the numerous events that seem to get blamed on ocular migraines, I've not found anything that seems to relate to how bending over so frequently kicks of an episode for me. I want to believe ocular migraine fits since that's not terribly serious....but perhaps my neural opthamolagist is correct that this is NOT just some form of migraine. I really hope the neurologist will order an MRI or whatever. Thanks for the term Retinal Migraine. Searched on it quickly, and it seemed just a variation of ocular. But I'll look more extensively later today and maybe can find a better fit for my symptoms using that as a search string. Thanks! >It's hard to answer questions about ocular Migraines because it's not a >standard diagnosis under the International Headache Society's International [quoted text clipped - 4 lines] >A Look At Retinal Migraine >http://www.helpforheadaches.com/articles/WhatRetinalMx.htm > I have read that ocular migraine is not much of an "official" > description and not formally recognized. Certainly I've found myself > that descriptions of it vary widely over the internet. It's "official" enough, because it's a distinct entity in everyone's clinic experience. Ocular migraine is far, far more common than retinal migraine. Ocular migraine indistinguishable from "regular" migraine except there's no headache. It involves the posterior cerebral artery and affects your visual cortex, almost always on just one side of the brain. So the visual symptoms always appear in _both_ eyes and always appear _to one side only_, stopping in the middle. They tend to be "formed" hallucinations like zigzags and heat waves. "Retinal" migraine aura would virtually never appear in both eyes. It would not likely cause nicely-formed and colorful hallucinations. It may well cross the midline. It may also be confused with non-migraine conditions like an arterial obstruction that can vary with thoracic pressure (bending over, bearing down). The understanding of migraine in general has changed a lot in the last couple of decades, but the relationship of _any_ migraine to bending over makes one cautious about your cerebral circulation. If you have the aura again, notice and tell your doctor whether it's hallucinations with shapes, or just gray fading, and try to notice whether it crosses the midline. Sometimes it's hard to tell that both eyes are involved, so cover each eye and check. -MT, OD >> I have read that ocular migraine is not much of an "official" >> description and not formally recognized. Certainly I've found myself [quoted text clipped - 27 lines] > >-MT, OD Hi Mike, Thank you for your input and the information. Note that I don't really have much by way of aura. Bit of "sparklies" for only a few moments before everything greys out into blindness. It's most definatley only in one eye - I have closed each eye to be sure during an episdoe. Thanks The first thing I would do (as an optometrist) is make sure it's not some type of retinal detachment. I don't think it is, but that's the first thing I would want to exclude. So assuming your retina looks OK the next thing I would check is a computerised visual field test which can often shed light on unusual conditions affecting the optic nerve. If this also shows up as being OK then I'd probably be stumped too, and I'd refer you to a neurologist - which has already been done. It certainly doesn't sound like a typical or classic ocular migraine, but still it does sound likes something to do with the blood supply to the head/brain/optic nerve/retina. You say you're healthy, does this mean your BP, cholesterol and weight are normal and you take regular exercise? Dom > Hello all, > [quoted text clipped - 58 lines] > maes_REMOVE-THIS_tro77@rogers.com > Obviously remove the portion so the name reads maestro77. Hello Dom, Thanks a ton for your response, particularly as you're an optometrist. Fear of retinal detachment is what took me to the ER the night I finally decided to seek medical attention. Three different doctors have now dilated my eyes (plus an orbit ultrasound) and so retinal detachement definitely doesn't seem the diagnosis. Didn't have any computerized visual field test - but since I've now been referred beyond just the 'eye realm' to a full neurologist, I guess it's too late to follow that avenue. My BP has been measured a couple of times at these doctors and has been normal if perhaps a touch high (I was obviously nervous). Had a cholesterol baseline test done perhaps 5-6 years ago - was a little bit high but not so much that the doc was particularly concerned. Standard advise of eating well and exercise. I'm 6 foot and about 175 lbs, so am rather on the slim side although with a slight pot belly these days. ;-) I've two small children, so don't get as much exercise as I used to (used to play softball and volleyball regularly) but now am reduced to only playing soccer once a week in the summer. Interesting that you agree this doesn't seem to fit the classic ocular migraine description. From what I've read on the internet, I think a LOT of my symptoms fit - but the strangest aspect seems to be the strong (but not absolute) correlation to bending over being an initiator. I was really hoping to find someone with a similar story. Thanks VERY much for your input. Cheers. >The first thing I would do (as an optometrist) is make sure it's not >some type of retinal detachment. I don't think it is, but that's the [quoted text clipped - 74 lines] >> maes_REMOVE-THIS_tro77@rogers.com >> Obviously remove the portion so the name reads maestro77. On Jan 23, 4:31 pm, Maestro77 <maes_REMOVE-THIS_tr...@rogers.com> wrote: > Hello all, > [quoted text clipped - 3 lines] > he has now referred me to a neurologist at the Stroke Prevention > Clinic. I'm currently awaiting that appointment. snip > I'd REALLY appreciate any input from people if you think this may in > fact be an ocular migraine. And IN PARTICLUAR I'd love any comment if > people have heard of ocular migraine's being initiated by bending Your doctors are doing the right things in the right order. Ocular migraine remains a possibility as do stroke, tumour and other cerebral vascular events. In a patient with symptoms like yours, who has never previously had migraines and does not have a definite headache with the episodes, then migraine is a "diagnosis of exclusion". That means that all other possible causes have to be ruled out before one says migraine. Carotid artery blockage and a few other things have been ruled out already. There is no test for migraine. As stressful as it is to wait for further testing, that is your only option. Dr Judy >On Jan 23, 4:31 pm, Maestro77 <maes_REMOVE-THIS_tr...@rogers.com> >wrote: [quoted text clipped - 27 lines] > >Dr Judy Hello Dr. Judy, Thanks very much for your response and opinion. I feel a bit reassured hearing you feel the various doctors I've seen are proceeding appropriately. Still difficult to wait of course - I wish our medical system was able to move faster - but in the big picture perhaps a 2.5 week delay to see a neurologist is reasonable. Of course if the next step is a MRI.....I may have to wait months which will be very frustrating. I'm also note you seem to feel that in fact what I'm experiencing might fall into the ocular migraine category - even with bending over being a key trigger to an episode. Certainly I prefer a form of migraine to a tumour or stroke! ;-) Thanks! A reply to me from the alt.support.headaches.migraine newsgroup: ************** Hi, - I'm intrigued by your post. - Don't wait 3 weeks if you suspect stroke: ================ http://www.StrokeAssociation.org/ - Phone: 1-888-4STROKE - Maybe aneurysm? That is before it goes pop! I have an info stash to Yahoo! concerning stroke or hemorrhage. Email me if you want the url. - I think I have experienced migraines a few times over the years, not knowing they were migraines. I called them "heat" headaches and I was near the realm of heat exhaustion every time. I never realzed they could be migraine. They really hurt though. During one episode I was so incapicitated on the job putting in below grade swimming pools I was fired on the spot! I couldn't do anything and these guys had no sympathy what so ever. - I was a distance runner since high school to age 50. One summer day, 1978 or so, doing a 4 mile easy does it run, I overdid it in the heat. Later that night my right vision got occluded, into tunnel vision, then bad headache. That was 1st visual incident. - April 2001 and many 10K races and half marathon races later I got visual experience #2. I was out training for a 10K race, running the course in 40 degree F. weather. I was overdressed so that set me up for heat exhaustion even in relatively cool temps. At mile 4, my vision was like looking backwards through a 3D fresnel lens image. At mile 6, I was into a very bad headache. Runners tend to ignore pain, it's a Zen thing. I didn't stop. A long story, short: I walked into ER and passed out. When I came around into in/out consciousness I was pitch black blind. I vomitted while on the gurney. I remained blind for 18 hours. That earned me 4 days in the hospital, starting out in an intensive care unit, and a ton of tests mostly cardiac. Conclusion? Nobody could tell me what or why as to what happened except I blew out my serum potassium right down to zero. A couple of RN's that were also runners said I probably got into heat exhaustion. Docs called it ALTERED STATES. I called it a really surreal place to be and I realized what we take as being normal is just a very fine balancing act into this surreal realm. While I was there in pitch black darkness, it was so relaxing, no fear existed. They called in a neurologist to ask me questions. I heard her talking, I knew what I wanted to say, yet couldn't speak. Listening to her was like she was at the end of a tunnel so far away. I asked the cardiologist if without hospital would I have survived this? He said doubtful. I think I was pretty close to the edge. Wife said I had clear bags of solution IV in each arm to get rehydrated. 18 hours later my vision returned. - I returned to running but after sunset. - December that same year I did brain hemorrhage in my left cerrebelum, not related to doing exercise. Something I was probably born with, popped! No warning signs. - Migraine problems since. What an ordeal learning to walk again. - September 2006 my 1st visual aura migraine with the brilliant white, flashing, wwwwwwww's. Everything went blurry. I couldn't see to dial the phone. I was on Toprol XL. Two days of horrible pain curled up in my recliner. - My GP put me on Fioricet. He had me do followup with my eye MD. I'm sorry, I don't know the eye exam jargon to tell you exactly the tests done. Some kind of computerized retina exam like looking into a fish bowl and they take photos of the eyes. Another test to check field of vision. He dilated my eyes with drops, did a look/see with a very bright light. My eyes were OK. But, now I gotta' be checked out every 6 months for my eyes. Next time a more advance field of vision test will be done. I do know I now get times when things go blurry and all I can do is give up and go to sleep. I'm OK when I awake. I take 25,000 units beta carotene as supplement, just one capsule when I get blurry and it helps. I did this on my own, knowing that WW II, B-17 pilots suffered vision problems on long missions and big doses of vitamin-A were prescribed for them. - All I'm giving you is similar experience. I'm not a doctor. I'm on a journey like you are and I take it day by day and reailze most with brain bleed episode, die or are really very messed up. My experience is just a minor inconvenience in comparrison to most stroke surviors. Go to a stroke recovery group up close and personal to see it. - I asked GOD in ICU to let me survive the bleed and not leave my wife a widow. I told Him I'd take whatever He dishes out and I'd try not to complain about it too much. You gotta' learn to adapt and go with the flow. - Out of 6 different neurological practices only one neurologist was migraine qualified as his exclusive practice and he was also a psychiatrist. He did EEG and carotid ultrasound, but I found him very close minded as Topomax was all he was interested in me taking and not willing to talk compromise as alternative therapy. - I take Toprol XL 50 mg (baby dose) daily to prevent them, or at least extend my activity range. Fioricet is for the pain when I get them. I had to really cut back my once very active life. Currently I walk a mile at 7 AM here in NY and 2 miles at 5 PM with my wife at my side. That probably still sounds more active than most do. Active to me is walking 7 miles back to Mt. Marcy in the Adirondacks and back before sunset. I'll never get that back. - Damndest thing, what a chore in the hospital filling out the daily menu. I lost the ability for quite awhile to make decisions. The other thing, visual, like to WalMarts, shelves of multicolored boxes really throw me to find a particular item. I never told a doctor, I just live with it. I drive my car OK, but if I ever get aura driving, I'm heading towards the sholuder quickly. I make sure I always have my cell phone on me and I will dial quickly 911 before I blurr out. - I have a rather sour disposition towards most doctors. There are a couple people on this board I'm pretty sure are MD's, good natured, well meaning pros. I liken it to finding a really good car mechanic, you got to just keep looking... ********* <maes_REMOVE-THIS_tro77@rogers.com> wrote: >Hello all, > [quoted text clipped - 58 lines] >maes_REMOVE-THIS_tro77@rogers.com >Obviously remove the portion so the name reads maestro77. On Thu, 25 Jan 2007 15:43:32 -0500, Maestro77 A follow up I received: ************ Hi again, - I'm not a doctor. - I Google'd some of your symptoms into their search input box and went from there. May or may not be specific to your symptoms. Chase out the leads and modify the search input terms to what you are experiencing. The medical jargon gets pretty intense, figure two or three days just looking up what the nouns mean. (LOL!) : =================== bend over starburst visual blindness+disease - Google Search http://www.google.com/search?hl=en&ie=ISO-8859-1&q=bend+over+starburst+visual+bl indness%2Bdisease&btnG=Google+Search =================== Flickering vision http://72.14.253.104/search?q=cache:HerLD52NjQcJ:www.medhelp.org/perl6/EyeCare/m essages/1665.html+bend+over+starburst+visual+blindness%2Bdisease&hl=en&gl=us&ct= clnk&cd=3&ie=UTF-8 =================== gray out blindness bending over - Google Search http://www.google.com/search?hl=en&lr=&ie=ISO-8859-1&q=gray+out+blindness+bendin g+over =================== Benign Recurrent Transient Monocular Blindness: A Possible Variant of Acephalgic Migraine ------------------------------ Blackwell Synergy - Headache, Volume 27 Issue 2 Page 66 - February 1987 (Article Abstract) http://www.blackwell-synergy.com/doi/abs/10.1111/j.1526-4610.1987.hed2702066.x =================== Acephalgic Migraine - Google Scholar http://scholar.google.com/scholar?hl=en&lr=&ie=ISO-8859-1&q=Acephalgic+Migraine% 0D%0A&btnG=Search ************** <maes_REMOVE-THIS_tro77@rogers.com> wrote: >A reply to me from the alt.support.headaches.migraine newsgroup: > [quoted text clipped - 203 lines] >>maes_REMOVE-THIS_tro77@rogers.com >>Obviously remove the portion so the name reads maestro77. WOW!!! First of all, thank you VERY much for taking the time to Goggle around looking for info for me. I've spent piles of time doing similar searches with search strings like that. BUT....you REALLY hit gold with the below link from Blackwwll Synergy. Please can follow the link if they want, but basically it's about an article from 1987 published in some headache medical journeal. From the little page fragment that Google shows you with the key words highlighted....I coudl see part of a phrase about "33% bending over". That sounded great because more than anything else, I'm looking for THAT specifically as an initiator of an episdoe. Unfortunately, the actual link only takes you to a page with a short abstract paragraph about the medical article. The sell access to the whole article for US$39. I figured if this article was helpful, then the money was nothing....and so bought it. Was a VERY interesting read. ***** These newgroup articles get archived on Google and elsewhere, so if anyone is searching for problems like mine and finds this posting, you can email me at maes_REMOVE-THIS_tro77@rogers.com and I'll be happy to email you the article for free. ******* Lots of detail in the article relevent to me but it turns out that of the study of 24 people, 33% did report attackes precipitated by bending over. And 4 others said by vigorous excersize - note that I once had an attack while playing soccer. All these people were otherwise healthy and not predisposed to the more serious possible diagnoses. Only 29% had previously suffered from migraine, so this problem was rather an abrupt thing. Al had been through a battery of tests like me with nothing wrong. All this very we matches me. The article didnt' really have any particular conclusion. The point of it seemed to just be pointing out that MAYBE these episodes of Transient Monocular Blindes are just a varienat of Acephalgic (painless) Migrain. And the article says few have ever researched a link like that as doctors tend to just to more severe conclusions and order a bunch of invasive tests. It remains possible I may have a serious problem. But if after my neurologis app't (and maybe more tests) she still sees nothing wrong. Then maybe I fall into this group of people and while the cause is unknonw, it may be it's must a weird form of migrain. The article said only 1 person had permanet vision loss, and it was some minor for or something. Plus, it hinted the loss might have been because of some other thing the person was experienceing. And a follow survey seemed to find people still alive many months later. So I feel better that it's hopefully unlikely I'll permanently go blind or die of stroke. I realize I should still follow through with all the neurological test to be sure. And believe me....I WANT those tests. But my mind is now at least somewhat at ease and it's easier to wait these weeks now. Again, Metal Man, THANK YOU for digging up that article for me. It's exactly the sort of thing I was hoping would result from my original newgroup posting. Best wishes to you!! Cheers. >On Thu, 25 Jan 2007 15:43:32 -0500, Maestro77 > [quoted text clipped - 242 lines] >>>maes_REMOVE-THIS_tro77@rogers.com >>>Obviously remove the portion so the name reads maestro77. Hello, Thank you for your input! Unfortunately, short of going to the ER (or phone the neurologists office) and out right lying about my situation to make is sound more serious, there's nothing I can do but continue to wait the remaining 12 days for an appointment. I phone days ago to try to request a quicker app't, but the helpful lady explained that 3 weeks WAS their "emergency app't" booking!!!! I presume if I suddenly fell over with some kind of horrible, dramatic symptom they'd see me sooner.....but that's not the situation. Anyway, thanks for taking the time to write so much. I guess your situation is very different from mine, but your story made for an interesting read. About doctors. I've actually been quite pleased with the 3 I've seen so far. Although the most recent neural opthamologist was boderline rude in his lack of willingness to patiently explain to me WHY he feels so strongly Ocular Migraine doesnt' fit. But by then he'd already decided I needed to go to a neurologist so I guess he was in a hurry - I do realize he (and every other doctor in the hosptial) are always SUPER busy. In general, I've also been pleased with the medical system - although taking longer than I'd have hoped, I do seem to be moving through the system appropriately and of course it's all for free in Canada so hard to complain too much. ;-) Thanks! >A reply to me from the alt.support.headaches.migraine newsgroup: > [quoted text clipped - 203 lines] >>maes_REMOVE-THIS_tro77@rogers.com >>Obviously remove the portion so the name reads maestro77. |
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