Visual Disterbance/ Migrain - Lasting 4 Months Now

[gary'sgirl]

Hi all,

I was wondering if anyone has had a similar experience and if they found the root of the problem and/or a treatment (preferably a natural treatment - I'm nursing an infant).

I woke up one morning in the beginning of January not being able to focus unless I held my eyes and head very still. At first I just thought I was so tiered from lack of sleep for so long that I was just having a hard time coming out of the "sleepy fog". As the morning went on I realized that it was not getting any better and I was dizzy and nauseated.

I stayed so bad constantly for 12 days that I could hardly walk the 5 feet from my couch to the bathroom without feeling as though I would fall and lose my balance.

At about day 13 it started getting a little better, but did not go away and I had times of it being worse again. It has not completely gone away since and although it is not as extreme a lot of the time I still will have days when it is severe all day and most days I have a period of time (or several) when it is severe again.

I notice that if I get stressed it makes it worse, but sometimes it's worse without me noticing that I am any more stressed than usual (I do seem to be in a constant state of stress to some degree).

Has anyone else had a similar experience?

And if you have, how do you describe it? I have had a very hard time describing what it is like.

Thanks for any help/advice. I really appreciate it.

[ravenwoodglass]

Some of the symptoms you are describing sound more like ataxia than a migraine. Did a doctor tell you these were migraines? If you haven't seen a doctor about this you should. Meanwhile think back to Jan. what changed? Are you on a supplement or med that started at that time? Did you change shampoos or lotions? Do people cook with wheat flour at your home? Are you very strict about CC? Is your home gluten free? If this wasn't an issue before this time and came on suddenly you need to look for the cause. A referral to a neurologist might be helpful.

[MartialArtist]

That doesn't sound like optic migraine issues. I have had what has been diagnosed as an optic migraine, though luckily for me, the headache doesn't follow. What happens to me is that I lose all vision in the upper left corner of my right eye (like the wedge from 10:00 to 12:00) for a period of 5-30 minutes -- it's just a black triangle. From what I've been told, that's pretty typical of this problem. And luckily for me, it has only happened 3 times (b/c it tends to freak me out pretty badly and I have to fight not to go into a panic over it -- easier now that I know what it is).

But just overall fuzziness of the vision that lasts for days -- I don't think that's a normal manifestation.

If I were you, I'd see a doctor to have some tests run.

[gary'sgirl]

For some more background information:

I am seeing a neurologist and I guess he thinks it's possibly a migraine because he is trying to find a preventative migraine med that I can take (having trouble finding a safe one for nursing).

I have had this happen before. The first time was two years ago and I thought that maybe I needed glasses or something. I went to an ophthalmologist and he told me I had perfect vision - he thought I was having a migraine.

That one lasted a month and resolved after I started taking some herbal supplements prescribed by my natural practitioner.

I have had the "migraine" reoccur for short periods of time over this past year until it started and did not go away in January.

My house is completely gluten free (as mush as I'm aware at least) and I could not think of anything that changed at that point in time. I had taken more food items out of my diet about three weeks before, because I had very little improvement in how I felt since taking gluten out of my diet in mid October.

There was one thing that i thought might have had something to do with it at first, but now I'm not sure the role it played. I had a miscarriage. It started the day that I noticed some improvement (although very little, but gradually it got better after that).

I was pretty devastated about the miscarriage. I had hoped that this would finally be a good pregnancy and that this baby wouldn't be born with digestive issues since we had finally found that I had Celiac.

That's a little bit more background. Let me know if anything is unclear.

I have had other more "normal" migrain symptoms too, but I just posted the ones that do not seem to ever completely go away.

I do have light, noise and smell sensitivities pretty much all the time. And extreme fatigue that never goes away.

[gary'sgirl]

Another thing I just thought of that is kind of weird. I recently realized that if I look a row of letters or something (like an eye chart) I have a harder time focusing on the letter in the center with both my eyes. It doesn't seem the same with each eye on it's own.

I don't know - just thought I would mention it.

[k2626]

I have had occular migraines for 10 yrs, I get them maybe once a yr. I see a little bright sprakley in my eye that over the course of 10 minutes explodes into 100% tunnel vision, its like looking at a kalidascope-and is terrifying, literally I cannot see. It lasts about 10 minutes then when the visual part is gone the headache sets in and I feel very out of it. When I first had one I thought it was a stroke.

[dilettantesteph]

I have had visual migraines since college, about 30 years. It is like my vision looks like a mirage. I don't get the pain part of the migraine, just the vision part. Usually I lie down and it goes away in about 1 hour. Once I was in the middle of something and I just kept doing it and the migraine still went away. They seem to happen more when I'm stressed and have low blood sugar. I've gotten them as often as once a week. Since going gluten free, I've only had one, and that was after accidental gluten ingestion. I think there might be a connection. I don't know if what you have is the same thing. I hope you get it figured out.

[Mac55]

I don't/didn't have exactly the same symptoms as you but I've struggled with "silent" migraines for a long time now. My balance was off a bit, not as severely as yours but I sure had to watch myself doing anything that required concentration. One of the worst times I had was after my second son was born. I was having them all the time. He was colicky and I also had a 16 month-old. I was so stressed and wasn't sleeping all that great. I did not drive at night. I just couldn't. The lights would mess with me so badly. There were times at the beginning that I had to make sure someone was with me in the evenings. My husband sometimes worked late, so I had my mom come over. I just couldn't cope sometimes.

After getting my Celiac diagnosis and going gluten-free I am much better. They are not everyday but I have weeks when I'll still get a few. Sometimes it's down to once a week! I just had my Neuro and GI appts in Boston the other day. My Neuro and I were trying to figure out which symptoms were from Celiac and which were from the migraines. It's getting a little easier to tell but I'm no expert. At the GI they ran a whole slew of tests and I know some are a little off. (I can access them online.) So, I'm just waiting to hear from them. Maybe something else is off and that will explain some of my other symptoms. Maybe it's still giving me the migraines too. Maybe something else is going on with you too? Do you see a GI? Have they run tests recently?

Lots of luck getting this all figured out! I know how frustrating it is!

[gary'sgirl]

I have had visual migraines since college, about 30 years. It is like my vision looks like a mirage. I don't get the pain part of the migraine, just the vision part. Usually I lie down and it goes away in about 1 hour. Once I was in the middle of something and I just kept doing it and the migraine still went away. They seem to happen more when I'm stressed and have low blood sugar. I've gotten them as often as once a week. Since going gluten free, I've only had one, and that was after accidental gluten ingestion. I think there might be a connection. I don't know if what you have is the same thing. I hope you get it figured out.

I'm glad you posted this dilettantesteph. When I read it it jogged my memory (I have been having an increasingly harder time remembering things - long and short term - I feel like I need to write everything down ).

Before this migrain started I would describe them like a mirage or looking through a fish tank.

I would still describe them this way (wow! I still can't believe I couldn't think of this description - I had been using it since my first one two years ago!). The only difference is that sometimes they get so extreme that it adds the double/tripple vision, dizziness and everything just intensifies.

I thought it was related to the gluten thing too - and I still do. I just wonder if there is now permanent damage or if I so low in a nutrient that it is causing this.

I am also having some other neurological issues, I just had an MRI and some blood work this week.

[gary'sgirl]

I have had occular migraines for 10 yrs, I get them maybe once a yr. I see a little bright sprakley in my eye that over the course of 10 minutes explodes into 100% tunnel vision, its like looking at a kalidascope-and is terrifying, literally I cannot see. It lasts about 10 minutes then when the visual part is gone the headache sets in and I feel very out of it. When I first had one I thought it was a stroke.

Hi k2626,I do get that kind of migraine sometimes too. The sparkley thing for sure and then I can't remember exactly how I would have described it, but I'm going to pay attention if it happens again.

Did all your peripheral vision go completely away or was that the part that was like a kaleidoscope?

[gary'sgirl]

I don't/didn't have exactly the same symptoms as you but I've struggled with "silent" migraines for a long time now. My balance was off a bit, not as severely as yours but I sure had to watch myself doing anything that required concentration. One of the worst times I had was after my second son was born. I was having them all the time. He was colicky and I also had a 16 month-old. I was so stressed and wasn't sleeping all that great. I did not drive at night. I just couldn't. The lights would mess with me so badly. There were times at the beginning that I had to make sure someone was with me in the evenings. My husband sometimes worked late, so I had my mom come over. I just couldn't cope sometimes.

After getting my Celiac diagnosis and going gluten-free I am much better. They are not everyday but I have weeks when I'll still get a few. Sometimes it's down to once a week! I just had my Neuro and GI appts in Boston the other day. My Neuro and I were trying to figure out which symptoms were from Celiac and which were from the migraines. It's getting a little easier to tell but I'm no expert. At the GI they ran a whole slew of tests and I know some are a little off. (I can access them online.) So, I'm just waiting to hear from them. Maybe something else is off and that will explain some of my other symptoms. Maybe it's still giving me the migraines too. Maybe something else is going on with you too? Do you see a GI? Have they run tests recently?

Lots of luck getting this all figured out! I know how frustrating it is!

Wow, your experience sounds a lot like mine. I haven't driven myself any where for five months until just a couple of weeks ago, and even when I have I can only go about 2 miles (5 min drive) to the grocery store. I tried to drive myself to my GI appointment a month ago and it was so scarry - I felt like I was going to pass out. I had to try really hard to pay attention to what was going on around me.

Also, I haven't been able to be left alone with my kids for more than an hour or two once or twice a week and even then I have a really hard time. I start have melt downs or panick attacks, when I have to be by myself (I still have them sometimes when I'm not by myself, but not as often and at least I can go into my room alone till I can pull myself together).

I feel a lot of guilt about all this, because my husband has had to stay with me and sacrifice grades at school (he's trying to finish his bachelor degree in architecture), and I'm worried that he may not graduate in a couple of weeks.

He is supposed to start working for the summer in a few weeks and I don't know what we are going to do. We don't have any family in the area and all our friend live a little too far from us - they can't really help enough anyway. I mean, how can someone leave their life and come stay with you five days a week while your husband works?

I'm really hoping that in the next few weeks I'll start feeling better, because it just seems that life is going to fall apart if I can't start taking care of my family like I need to - let alone stop needing someone to take care of me sometimes.

Sorry - I guess I just started spilling my guts. I know you guys will understand - at least a little.

[Skylark]

I have a friend with optic migraines. It took him two years to get diagnosed! He is on nortryptyline and says it helps a lot, but I imagine that's not an option nursing. When I first started getting perimenstrual migraines my neurologist gave me a migraine diet to try. I found I was a little sensitive to MSG. The other foods you eliminate contain a natural monoamine called tyramine. If you're seeing a neurologist, I'm sure he can provide a list.

[gary'sgirl]

I have a friend with optic migraines. It took him two years to get diagnosed! He is on nortryptyline and says it helps a lot, but I imagine that's not an option nursing. When I first started getting perimenstrual migraines my neurologist gave me a migraine diet to try. I found I was a little sensitive to MSG. The other foods you eliminate contain a natural monoamine called tyramine. If you're seeing a neurologist, I'm sure he can provide a list.

I was just thinking about what you wrote about the diet, skylark, and I remembered that I did ask him if there were any alternatives to drugs that I could try first. He said "not really. you could try taking a walk every day and make sure you're eating healthy". So I guess he doesn't really know about - or chooses not to use - a specific diet that can help.

I know I don't get any MSG now. I started staying away from that stuff years ago when some friends where having bad reactions to it. What foods have the monoamine in them? Do you remember? I would appreciate the info, but if not I'm sure I can do a search for it.

Thanks for the suggestion.

[AKcollegestudent]

I was just thinking about what you wrote about the diet, skylark, and I remembered that I did ask him if there were any alternatives to drugs that I could try first. He said "not really. you could try taking a walk every day and make sure you're eating healthy". So I guess he doesn't really know about - or chooses not to use - a specific diet that can help.

I know I don't get any MSG now. I started staying away from that stuff years ago when some friends where having bad reactions to it. What foods have the monoamine in them? Do you remember? I would appreciate the info, but if not I'm sure I can do a search for it.

Thanks for the suggestion.

This is the migraine elimination diet I did last year, and I will be doing it again this summer. (It's suspected we missed some the last time.) Open Original Shared Link

I need both meds and cutting out food triggers to get mine to a manageable level (2 or three a week, as opposed to daily and unrelenting), but the elimination diet helped immensely.

And please, for the love of god, find a different neurologist. I went through two before I found the one I have now, and while he's not perfect, he knows a lot more about cutting edge research. If he didn't, he wouldn't have agreed with the nutritionist or put me on the latest med combo.

A different neuro might be able to find a med that helps with the migraines without harming the baby as well. And more than that, everyone else has a point: if you haven't had both an MRI and a CAT scan recently, you need to have those again.

[Skylark]

How odd. I'm really surprised your doctor didn't at least mention MSG.

That Health Central diet looks good. Here's another low-tyramine diet from the National Headache Foundation. You can see there is a lot of overlap with the Health Central one.

Open Original Shared Link

Here's a particularly good article that explains the triggers and groups of common problem foods.

Open Original Shared Link

[Eliza82]

Hi - I've been dealing with a 13 month migraine because of a strong antibiotic kicking it off and the possibility that I also have a gluten intolerance.

I have been getting acupuncture and taking chinese herbs from my acupuncturist for the last few months and its safe to say that my migraine is almost gone. I was at the point of not being safe enough to drive too. The acupuncture doesn't hurt one bit and it hashelped with so many other issues I've had. I reccomment it highly and I look forward to it each week...it is amazing and helps you feel wonderful!

Good luck!

[T.H.]

A little while after I went gluten free, I started getting migraines, dizziness, nausea, etc... Some lasted all the time, some came and went.

For me? It's other foods. I found out I have other food allergies - none of them cause this. But after keeping a food log, and cutting my foods down to the bone, so I barely ate anything, and nothing I hadn't made from scratch, I started noticing a pattern. Eating peanuts? I've got a migraine. Legumes? A migraine. Citrus? Earaches. And so on...

I've been to both a neurologist and an ear, nose and throat specialist, who both could find nothing. And who both essentially implied that it was all stress or in my head. Considering that I have had all these foods by accident, and had the same symptoms, I know it's not all in my head.

There's no test that has said what this is, or why, and I know that intolerance tests don't exist for these foods. But if I don't eat them? No migraines, no dizziness, all gone.

And if I accidentally get them, wham, back comes the bad stuff. I honestly don't know what the heck it's from, or why it's happening, although my GI doc says he's seen other celiacs develop this kind of 'sensitivity' before, and that it usually goes away within a couple years of staying away from the foods. I'm only 8 months into it, so I can't say yet how that works. But...might be worth a shot, if nothing else works.

Hi all,

I was wondering if anyone has had a similar experience and if they found the root of the problem and/or a treatment (preferably a natural treatment - I'm nursing an infant).

I woke up one morning in the beginning of January not being able to focus unless I held my eyes and head very still. At first I just thought I was so tiered from lack of sleep for so long that I was just having a hard time coming out of the "sleepy fog". As the morning went on I realized that it was not getting any better and I was dizzy and nauseated.

I stayed so bad constantly for 12 days that I could hardly walk the 5 feet from my couch to the bathroom without feeling as though I would fall and lose my balance.

At about day 13 it started getting a little better, but did not go away and I had times of it being worse again. It has not completely gone away since and although it is not as extreme a lot of the time I still will have days when it is severe all day and most days I have a period of time (or several) when it is severe again.

I notice that if I get stressed it makes it worse, but sometimes it's worse without me noticing that I am any more stressed than usual (I do seem to be in a constant state of stress to some degree).

Has anyone else had a similar experience?

And if you have, how do you describe it? I have had a very hard time describing what it is like.

Thanks for any help/advice. I really appreciate it.

[gary'sgirl]

I saw my neurologist yesterday and all the tests i had came back okay. (I had an MRI, nerve testing and some blood work for other various diseases) The test for lupus came back "borderline", but the doc told me that it fell withing normal ranges, so it was nothing to worry about - whatever that means .

I talked with him about taking Tyramine out of my diet for the migraines that I have been having, and also I asked about having vitamin levels tested - especially B12. He conceded and ordered B12, Folate, Methylmalonic Acid, and vitamin A level. He also gave me a list of foods that contain tyramine and said that it would be okay to try taking that out of my diet for now and see what happens.

I'm a little unhappy with him for not suggesting the tyramine thing in the first place - especially because I specifically asked if there was something we could try first with diet or whatever, before trying medication.

We will see, I may be looking for a new doc.

[gary'sgirl]

T.H., thanks for sharing your experience. It could be something like that for me too. I have cut out a ton of things from my diet: night shades, legumes, the cabage family, all nuts, etc... And I am just adding back in corn and rice to see if I can tollerate them.

So I am down to not many food items.

I may try cutting out more if this other stuff doesn't work.