Migraine aura anyone? Or does the cheese stand alone?

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caro

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Yes I hate when that happens! Wish I could sleep through the auras. Had a migraine today - weather is a big trigger for me.
 

slipkid

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Mine always start the same way, I realize I cannot see correctly in the center of my vision - part is missing, like if I am looking someone in the face part of their nose just won't be there (very small though). And not like there is a visual gap of some kind taking it's place, just nothing there to see of any kind. At first I hope it is just something like sun blindness right after a bright light hits me but when it lingers, then grows, then turns into an oscillating dot which then starts shimmering and growing into lightning bolt or meteor shape (and multiplying all over the place), I know what I'm in for.

I said this b4 up here either here or in a different migraine thread, I wish when I have a migraine that everyone can see it from looking at me, like have these damn shapes or lights flying out of my head/eyes so I can get some sympathy or rather not have any demands put on me like at work where things continue to be thrown at me 100 miles an hour and am expected to just keep working as usual when all I really want to do is hide in a quiet very dark room for awhile. I used to be able to do that when I had a "real" job rather than this godawful factory crap.
 

fynky

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My doctor says I have a colorful medical history. Scintillating scotoma (DuckDuckGo is my friend) is part of it.
Colorful blind spot in my peripheral vision, can be either eye. VERY distracting.
Started in 1976, seems to be related to low blood sugar (skipping lunch while working road construction).
Since 1976 I have experienced Type II diabetes (still got it), chronic Lyme disease (still got it), complete heart block(Lyme), a pacemaker, a double heart valve replacement (aortic & mitral, bovine replacements), and cataracts removed from both eyes in 2019, but the aura lives on. No headaches or any other related symptoms.
I've learned to live with it.
 

slipkid

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Oh man. Don't get me started on Lyme. What an enormous coverup and totally willful ignorance & misinformation campaign the AMA & "infectious disease specialists" will put you through with that. I feel your pain, have been a lyme (& erlichiosis) sufferer starting around 1980 and gone through numerous misdiagnoses over the years.
 

Amy

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Not sure how much you can trust a book called ‘magic home remedies,’ but it did include (for other ailments) treatment that I’ve tried and known to be effective, so..
 

Protimenow

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The page of the book shown a few posts before this said to look for triggers on labels of products you buy. I don't recall EVER seeing sauerkraut listed as an ingredient.

FWIW - one of my triggers may be peanut butter. Every once in a while, I have peanut butter, and when I get frequent auras, my wife will ask me if I had peanut butter. Most of the time, she's right.

As much as I really like the stuff, I've got to be fairly careful with it.
 

doclewis

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If you go the route of the injectable therapy, please share your results with us. Thanks for sharing the info from your neurologist.
I know your post is several months old but recent changes lead me to post a reply. I did take emgality for several months and actually did worse. For two months had 7 to 8 migraines a month. I had not had this many in a long time. Neurologist said to keep using it, but prescribed lamictal (a seizure medication). He said this was the most beneficial in preventing auras. Built up dose to the amount he felt was the usual amount needed for effect. It has now been there months and I have had only two. Currently 33 days since last one. This is by far the best three months I have had since my surgery six years ago. The neurologist recommended I continue the emgality because I told him that the after effects of the aura, though not severe were bothersome to me, were less than before I started taking it. This was very subjective and I don't really think it has done any good. 70 dollar co pay. I have decided to continue it for a year. and then quit. I am very pleased with effects of the lamictal. I don't want to get to excited about it yet ad I am still concerned that thy will get more frequent again as episodes have waxed and waned in the past. Don't want to recommend this as I know only my experience.
 

Mr V

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I had never experienced the aura until a couple days after my surgery. They were worried it was a stroke so gave me heparin. Was getting them probably weekly. Reminded me of looking through a kaleidoscope. Would start toward the middle and then eventually move to the side and would be gone. Got a little bit of a headache with them but not bad. Saw a neurologist and he thought they were typical migraine auras. My primary care doctor decided to have me try nasonex, a nasal steroid spray. It did cut down on the frequency. I would say now I probably only get them once a month.
 

Christyleedh

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So interesting to see this. This sounds like my story. I had occasional migraines before my AVR, maybe once or twice a year. All the same potential triggers, exercise, bright lights, lack of sleep, or not eating. after second OHS (an MVR) they became more frequent and severe.
My neurologist said it could be dehydration, which may explain the food and exercise thing. I try to drink a huge glass of water before and after exercising. He also recommended coq10, magnesium oxide, b12, and b2.
I’m interested if anyone has had an MRI? I’m now getting stroke symptoms, (slurred speech and facial drooping), which they thought could be an atypical migraine, but my MRI is showing evidence of stroke, potentially related to clots on my mechanical mitral valve.
 

cldlhd

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So interesting to see this. This sounds like my story. I had occasional migraines before my AVR, maybe once or twice a year. All the same potential triggers, exercise, bright lights, lack of sleep, or not eating. after second OHS (an MVR) they became more frequent and severe.
My neurologist said it could be dehydration, which may explain the food and exercise thing. I try to drink a huge glass of water before and after exercising. He also recommended coq10, magnesium oxide, b12, and b2.
I’m interested if anyone has had an MRI? I’m now getting stroke symptoms, (slurred speech and facial drooping), which they thought could be an atypical migraine, but my MRI is showing evidence of stroke, potentially related to clots on my mechanical mitral valve.
Sorry to hear about the potentiality of a stroke. I used to occasionally get slurred speech and actual numbness in a hand or my tongue when I got a full-blown migraine but after my heart surgery I don't really get that anymore I just get the auras. Whereas I used to get a full-blown migraine with vomiting and the whole 9 yds anywhere from 0 to probably 3 times a year now I get the aura a few times a month but it usually just goes away and I'm fine. Occasionally I'll get a little bit of a headache or feel a little crappy afterwards but nothing major. Interestingly, or not, I have been taking CoQ10 because I'm on 40 mg of pravastatin daily and I have read it's good to supplement with that. I started getting more regular auras, maybe I'm looking for a pattern who knows, when I was out of CoQ10 for a couple of weeks. Started back on it this week so I guess I'll see. Best of luck
 

Protimenow

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Bright light has always been a trigger for me. I got my first migraine when I was a doorman at a movie theater, and the bright sunlight reflected off the windows of passing cars triggered my first migraine. These were terrible, in comparison to the ocular migraines (usually without pain) that I now get occasionally. '

Bright lights sometimes still trigger the ocular migraines. Other times, I don't know WHAT triggers them.

Zyrtec used to trigger symptoms that were described here - loss of feeling in the side of the tongue, tingling in fingers, and for me and at least one other person I know, temporary loss of vision in one eye - scary, but it resolved. If you're taking Zyrtec - STOP NOW.

I haven't looked into the subject of supplements that may help prevent or reduce the incidence of these. Years ago, a few bites of chocolate and a can of coke or pepsi stopped them COLD. Today, I don't drink carbonated water (except for the water that I carbonate at home), and don't have a lot of chocolate, so I don't have THAT remedy available to me.

Avoiding bright lights helps. Sometimes just covering my eyes and resting helps. And, if I don't have time to coddle the symptoms, I just go about my business, and the thing disappears in about 30 minutes.

As far as TIAs (or what some doctors want to call 'mini-strokes', I had one because I relied on a meter that wasn't accurate - it was telling me that my INR was 2.6 - the hospital lab said it was 1.6 or 1.7). My recovery was pretty complete - weakness or actually lacking the feel of - my left leg cleared up. I still may have some mental issues - maybe - or I'm still as strange as I used to be. If I had it to do again, I'd test with a different meter, manage my own medication more carefully (and NOT trust the doctors to do it), and test more often (weekly is best).

For minor TIAs, sometimes pretty complete recovery, or training new areas of the brain to take over functions that may have been hampered by the stroke, often brings back complete or almost complete muscular function.

Just keep at it....
 

cldlhd

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Bright light has always been a trigger for me. I got my first migraine when I was a doorman at a movie theater, and the bright sunlight reflected off the windows of passing cars triggered my first migraine. These were terrible, in comparison to the ocular migraines (usually without pain) that I now get occasionally. '

Bright lights sometimes still trigger the ocular migraines. Other times, I don't know WHAT triggers them.

Zyrtec used to trigger symptoms that were described here - loss of feeling in the side of the tongue, tingling in fingers, and for me and at least one other person I know, temporary loss of vision in one eye - scary, but it resolved. If you're taking Zyrtec - STOP NOW.

I haven't looked into the subject of supplements that may help prevent or reduce the incidence of these. Years ago, a few bites of chocolate and a can of coke or pepsi stopped them COLD. Today, I don't drink carbonated water (except for the water that I carbonate at home), and don't have a lot of chocolate, so I don't have THAT remedy available to me.

Avoiding bright lights helps. Sometimes just covering my eyes and resting helps. And, if I don't have time to coddle the symptoms, I just go about my business, and the thing disappears in about 30 minutes.

As far as TIAs (or what some doctors want to call 'mini-strokes', I had one because I relied on a meter that wasn't accurate - it was telling me that my INR was 2.6 - the hospital lab said it was 1.6 or 1.7). My recovery was pretty complete - weakness or actually lacking the feel of - my left leg cleared up. I still may have some mental issues - maybe - or I'm still as strange as I used to be. If I had it to do again, I'd test with a different meter, manage my own medication more carefully (and NOT trust the doctors to do it), and test more often (weekly is best).

For minor TIAs, sometimes pretty complete recovery, or training new areas of the brain to take over functions that may have been hampered by the stroke, often brings back complete or almost complete muscular function.

Just keep at it....
I think it has a bit of a mystery what might trigger them for many of us. I was told when I was younger to avoid chocolate, but I don't see any connection between it and having a migraine aura these days. I had two times in the past couple of years where I had that weird feeling in my right leg, where I could walk but it felt almost like my leg wasn't there. Scary as hell. I'm not sure about the first time but the last time it happened was a couple of weeks ago and that morning I had three migraine auras morning which is rare for me. I could walk and my leg was responding but it didn't feel like I was getting any feedback from it if that makes any sense. The first time it happened I did what I usually do and I just ignored it and pretended that that happened. The last time I looked up the symptom online which was properly scary. Things like ALS came up. But seeing that I've only had it twice and I know for certain the one time, maybe both, was right after an ocular migraine I'm pretty certain that's what it was. I see you had a lack of feeling in your leg due to a TIA, I don't have any other symptoms of having had one, I'm not on warfarin, my blood pressure is good, no signs of clogged arteries etc...so I don't think it was that. I'm curious, if you don't mind me asking, how long did you have that lack of feeling in your leg and do you know if that lack of feeling in the leg could be attributable to the ocular migraine rather than a TIA, similar to the lack of feeling in a hand or one side of the tongue? I only had that feeling for a couple of minutes and then I felt normal. Thanks
 

Protimenow

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In regards to my TIA - I was sitting at my desk, and fell asleep for a few minutes. When I woke up, it felt as if my lower left leg was HEAVY. I was thinking about TIA and immediately took two aspirin.

Not having insurance - and not realizing that hospitals have to see people in the E.R. regardless of whether or not they had insurance, I put up with the symptom, did some shopping (picked up a prescription), and two days later, went to a hospital run by the county. I didn't describe my symptom clearly enough when I went through triage, and instead of seeing me right away, I waited seven hours or so until I finally saw a doctor and was admitted.

The feeling in my leg took a while - I'm not sure how long - until it felt 'normal.'

In regards to ocular migraines - I was told that the caffeine in chocolate helps to stop the migraines - in fact there's a medication called caffergot, containing ergotamine and caffeine, that I've had over the years to lessen migraine symptoms. I don't know if they still prescribe it. But I do recall that a Milky Way bar and can of Pepsi - years ago - could sometimes stop these things almost immediately.
 

doclewis

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To briefly repeat my story. Migraines since adolesence. Rare. About age 35 no longer got headache. Just the aura, with visual distrbance and occasionally numbenss of one side of face and fingers of one hand (ocular migraine} Still rare, maybe every three or four months and and didn't pay much attention. Did not stop work, lie down, or close my eyes. After sugery (aortic valve replacement) they became very frequent, at least twice a week. Frequency waxed and waned but did not get much better. I tried everything I knew to be a trigger. I noticed I did not fell well for a day after. Mild headache, lethargy and no appetite. Saw one neurologist early on and was told she had never heard of this related to surgery and offered no treatment. Tried avoiding one thing at a time to see if it was trigger.I thought exercise or dehydration was a trigger but no real improvement even stopped any strenous exercise. Avoided many foods and alcohol without success. Tried otc treatments without success. About a year ago saw a neurologist who was headache specialist. He said he had seen this phenomena several times after heart surgery.
I did have an mri and a 48 hour eeg. Mri showed small areas of "gliosis" which he said were part of aging and were associated with migraines but cause and effect not determined. First tried on monoclonal antibody monthly injections. They did no good. In fact seemed to be more frequent though possibly less after effects. Took them for six months and quit. Then was tried on a seizure medication. Started low dose and worked up to theraputic dose with no ill effects and have been on same dose now for six months. This is the first thing that seems to have a big effect. In six months I have had five ocular migraines. The month before I had seven. The few that I have had, I had no after effects. I am very hopeful that this may be the answer to my problem.
 

Freebird

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"Then was tried on a seizure medication. Started low dose and worked up to theraputic dose with no ill effects and have been on same dose now for six months. This is the first thing that seems to have a big effect. In six months I have had five ocular migraines. The month before I had seven. The few that I have had, I had no after effects. I am very hopeful that this may be the answer to my problem."

What is the seizure medication and the dose that has helped?
 

cldlhd

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To briefly repeat my story. Migraines since adolesence. Rare. About age 35 no longer got headache. Just the aura, with visual distrbance and occasionally numbenss of one side of face and fingers of one hand (ocular migraine} Still rare, maybe every three or four months and and didn't pay much attention. Did not stop work, lie down, or close my eyes. After sugery (aortic valve replacement) they became very frequent, at least twice a week. Frequency waxed and waned but did not get much better. I tried everything I knew to be a trigger. I noticed I did not fell well for a day after. Mild headache, lethargy and no appetite. Saw one neurologist early on and was told she had never heard of this related to surgery and offered no treatment. Tried avoiding one thing at a time to see if it was trigger.I thought exercise or dehydration was a trigger but no real improvement even stopped any strenous exercise. Avoided many foods and alcohol without success. Tried otc treatments without success. About a year ago saw a neurologist who was headache specialist. He said he had seen this phenomena several times after heart surgery.
I did have an mri and a 48 hour eeg. Mri showed small areas of "gliosis" which he said were part of aging and were associated with migraines but cause and effect not determined. First tried on monoclonal antibody monthly injections. They did no good. In fact seemed to be more frequent though possibly less after effects. Took them for six months and quit. Then was tried on a seizure medication. Started low dose and worked up to theraputic dose with no ill effects and have been on same dose now for six months. This is the first thing that seems to have a big effect. In six months I have had five ocular migraines. The month before I had seven. The few that I have had, I had no after effects. I am very hopeful that this may be the answer to my problem.
It's funny my cardiology team at the University of Pennsylvania said they had never heard of this, but the neurologist I saw there said that it is a frequent occurrence. He said that my brain was 'tickled' by the pump. What he thought was odd was the fact that although I got them more frequently after surgery I pretty much had only got the aura and they really nasty headache and nausea was gone. Occasionally I will feel a little crappy after one but not normally a big deal. I'm curious did they say that the "gliosis" was caused by the migraine auras or was it the other way around? My main concern is whether or not getting more frequent auras might cause more permanent damage to the old brain. If it's just something I get that comes and goes I can live with it
 

doclewis

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It's funny my cardiology team at the University of Pennsylvania said they had never heard of this, but the neurologist I saw there said that it is a frequent occurrence. He said that my brain was 'tickled' by the pump. What he thought was odd was the fact that although I got them more frequently after surgery I pretty much had only got the aura and they really nasty headache and nausea was gone. Occasionally I will feel a little crappy after one but not normally a big deal. I'm curious did they say that the "gliosis" was caused by the migraine auras or was it the other way around? My main concern is whether or not getting more frequent auras might cause more permanent damage to the old brain. If it's just something I get that comes and goes I can live with it
 

doclewis

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I had also discussed problem with my cardiologist and surgeon years ago and both had never heard of this. As far as mri is concerned, migraines are statistically more common with gliosis but no evidence that gliosis causes migraines or vice versa. Same thing with normal variant seen on my eeg. It is seen more frequently in migraine patients.
 

doclewis

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"Then was tried on a seizure medication. Started low dose and worked up to theraputic dose with no ill effects and have been on same dose now for six months. This is the first thing that seems to have a big effect. In six months I have had five ocular migraines. The month before I had seven. The few that I have had, I had no after effects. I am very hopeful that this may be the answer to my problem."

What is the seizure medication and the dose that has helped?
generic lamictal 100mg
 

Terrip

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To briefly repeat my story. Migraines since adolesence. Rare. About age 35 no longer got headache. Just the aura, with visual distrbance and occasionally numbenss of one side of face and fingers of one hand (ocular migraine} Still rare, maybe every three or four months and and didn't pay much attention. Did not stop work, lie down, or close my eyes. After sugery (aortic valve replacement) they became very frequent, at least twice a week. Frequency waxed and waned but did not get much better. I tried everything I knew to be a trigger. I noticed I did not fell well for a day after. Mild headache, lethargy and no appetite. Saw one neurologist early on and was told she had never heard of this related to surgery and offered no treatment. Tried avoiding one thing at a time to see if it was trigger.I thought exercise or dehydration was a trigger but no real improvement even stopped any strenous exercise. Avoided many foods and alcohol without success. Tried otc treatments without success. About a year ago saw a neurologist who was headache specialist. He said he had seen this phenomena several times after heart surgery.
I did have an mri and a 48 hour eeg. Mri showed small areas of "gliosis" which he said were part of aging and were associated with migraines but cause and effect not determined. First tried on monoclonal antibody monthly injections. They did no good. In fact seemed to be more frequent though possibly less after effects. Took them for six months and quit. Then was tried on a seizure medication. Started low dose and worked up to theraputic dose with no ill effects and have been on same dose now for six months. This is the first thing that seems to have a big effect. In six months I have had five ocular migraines. The month before I had seven. The few that I have had, I had no after effects. I am very hopeful that this may be the answer to my problem.
I had occasional migraines starting in my 20s. After my aortic valve replacement at 72 they have become more frequent with just the aura and visual disturbances.
 
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