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Hi All,
Just to update everyone who was concerned, I finally got around to checking with my doc, and based on the symptoms, recent blood test results, etc., he was confident that it was indeed just a migraine aura, and not a TIA.
I appreciate your concern.
Love,
Tex
Acephalgic Migraines - Anyone Else Ever Have Them?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Tex, I’m glad to read that you have consulted with your Doc on this issue, and that he has set your mind at ease regarding these “events”.
I have had this exact experience a few times. My “events” always start as a small oval space in the left side of my visual field, with jagged lines completely filling the oval. Gradually the oval, with its jagged lines, enlarges to fill the whole visual field -- and then the whole thing fades and disappears. The duration of these events is approximaty 20 – 30 minutes from start to finish.
When this first happened to me I was certain that this was not strictly an eye problem because, as when I would alternatly close one eye and then the other, I found that this strange image was present in each eye no matter which eye I was using. To me this seemed to indicate that this was not an eye problem, but rather something happening back in the brain. Uff-dah!
The first time this happened to me was about 25 years ago while on vacation in Arizona. I was in a dressing room in a clothing shop trying on clothes. IT SCARED THE DEVIL OUT OF ME. Boy ‘o boy, I could imagine all kinds of serious brain pathologies which could be causing such a bizzare happening.
When I got home I checked in with my PCP who assured me that this event was most likely what is termed a “Migraine aura”. They are fairly common and nothing to worry unless they became frequent, in which case further investigation might be warrented.
I did not have another such event for nearly 20 years. Now I spend part of the year in Arizona and, low and behold, while I am there, I have - very occasionally - experienced these “migraine events” again. I can only deduce that in my case there is something there that triggers this for me. I have told my opthamologist about this happening also, and the reply is much the same as the PCP’s many years ago.
So when this occures I sit back, close my eyes, and wait for the situation to resolve.
I have never been a migraine headache sufferer in my life, and these incidents are not followed, or preceeded, by headache -- or anything else that I have ever noticed.
I was told that approximatly 60% of what is termed “migraine” is manifested by the traditional viscious sick headaches that we all assosciate with the term. The other approximatly 40% of “migraine” occures in many seemingly bizzare neurological ways, which does include these opthomological events that are the topic of this thread.
I have a good friend that was eventually diagnosed as suffering from a version of “migraine” after a series of trips to the ER with what seemed to be significant TIA symptoms.
His situation is to long to recount here, but it took in the neighborhood of 25 trips (yes, you read that right --- 25 trips) to an emergency room, (all within a period of about 5 months) in an EMS ambulance, --- with ER admissions, --- and appropriate CT scans to rule out a brain bleed, --- BEFORE he was finally referred on to neurology for a diffinative diagnosis. (Try to imagine the cost of all of that!).
Finally!!!!, after all those ER trips and admissions, what must have been a sharper than average ER Doc drew his case, and looked with a more critical eye at what was by that time a voluminous history. She insisted he seek neurological evaluation for what most assuradly – by this time – was not an imminent stroke.
His Neuro Diagnosis: “Migraine”.
The frequency and severity of his “events” has diminished markedly since he recieved the diagnosis and explanation of “Migraine”. That finally relieved him of the terror of impending stroke.
My Best,
Gayle
I have had this exact experience a few times. My “events” always start as a small oval space in the left side of my visual field, with jagged lines completely filling the oval. Gradually the oval, with its jagged lines, enlarges to fill the whole visual field -- and then the whole thing fades and disappears. The duration of these events is approximaty 20 – 30 minutes from start to finish.
When this first happened to me I was certain that this was not strictly an eye problem because, as when I would alternatly close one eye and then the other, I found that this strange image was present in each eye no matter which eye I was using. To me this seemed to indicate that this was not an eye problem, but rather something happening back in the brain. Uff-dah!
The first time this happened to me was about 25 years ago while on vacation in Arizona. I was in a dressing room in a clothing shop trying on clothes. IT SCARED THE DEVIL OUT OF ME. Boy ‘o boy, I could imagine all kinds of serious brain pathologies which could be causing such a bizzare happening.
When I got home I checked in with my PCP who assured me that this event was most likely what is termed a “Migraine aura”. They are fairly common and nothing to worry unless they became frequent, in which case further investigation might be warrented.
I did not have another such event for nearly 20 years. Now I spend part of the year in Arizona and, low and behold, while I am there, I have - very occasionally - experienced these “migraine events” again. I can only deduce that in my case there is something there that triggers this for me. I have told my opthamologist about this happening also, and the reply is much the same as the PCP’s many years ago.
So when this occures I sit back, close my eyes, and wait for the situation to resolve.
I have never been a migraine headache sufferer in my life, and these incidents are not followed, or preceeded, by headache -- or anything else that I have ever noticed.
I was told that approximatly 60% of what is termed “migraine” is manifested by the traditional viscious sick headaches that we all assosciate with the term. The other approximatly 40% of “migraine” occures in many seemingly bizzare neurological ways, which does include these opthomological events that are the topic of this thread.
I have a good friend that was eventually diagnosed as suffering from a version of “migraine” after a series of trips to the ER with what seemed to be significant TIA symptoms.
His situation is to long to recount here, but it took in the neighborhood of 25 trips (yes, you read that right --- 25 trips) to an emergency room, (all within a period of about 5 months) in an EMS ambulance, --- with ER admissions, --- and appropriate CT scans to rule out a brain bleed, --- BEFORE he was finally referred on to neurology for a diffinative diagnosis. (Try to imagine the cost of all of that!).
Finally!!!!, after all those ER trips and admissions, what must have been a sharper than average ER Doc drew his case, and looked with a more critical eye at what was by that time a voluminous history. She insisted he seek neurological evaluation for what most assuradly – by this time – was not an imminent stroke.
His Neuro Diagnosis: “Migraine”.
The frequency and severity of his “events” has diminished markedly since he recieved the diagnosis and explanation of “Migraine”. That finally relieved him of the terror of impending stroke.
My Best,
Gayle
Gayle,
It sounds as though our symptoms were very similar. I'll bet you're right about something in Arizona triggering them. Maybe it has something to do with all the bright sunlight available out there, (due to the relatively clean atmosphere). My eyes were photosensitive during and after my "event", and I've read that that's a common symptom.
All I can say about your friend's ordeal in getting a diagnosis is "Wow!". Apparently most ER docs either don't bother to look at records, or don't pay much attention to them.
You're right - that had to be a very expensive diagnosis.
Thanks for the info,
Tex
It sounds as though our symptoms were very similar. I'll bet you're right about something in Arizona triggering them. Maybe it has something to do with all the bright sunlight available out there, (due to the relatively clean atmosphere). My eyes were photosensitive during and after my "event", and I've read that that's a common symptom.
All I can say about your friend's ordeal in getting a diagnosis is "Wow!". Apparently most ER docs either don't bother to look at records, or don't pay much attention to them.
You're right - that had to be a very expensive diagnosis.Thanks for the info,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi all,
Just here for a short while.
I will have to respond to "all of the above" in terms of migraines. I like the "disturbed water" description -- sounds like my visual aura with these things, only alot of mine I would describe as being multi-faceted, kind of like one of those big disco balls with mirrors on each of the many sides of it. Guess my migraines are just organized! Ha!
The smells that weren't there went away when I started on the gf diet. I thought something had died in the attic!
One of the weirdest things about my migraines is that while I was incapacitated with them, I began to notice that the chills I'd have with them weren't at all symetrical in my body. It was weird having a cold sensation on one leg and no where else. Then, it would go away, and I'd feel that cold in another place on my body. It was still like having a chill when you have a fever, only I didn't feel like I had a fever, if that makes any sense.
Now, I've only had migraines from eating nitrates/nitrites (??) in a ham (mailed to me for Thanksgiving) over a period of several days, so food sensitivities aren't the only thing that's in food that can trigger these for me. I think that MSG would do it for me as well, but I don't have much of a likelihood of eating any of that now, thankfully. I will also have a hormone reaction if I don't keep my patches ontime. Then, if I change my sleeping habits drastically, particularly if I sleep way longer than usual, that will do it sometimes. I used to notice that sometimes I'd react during a barometric pressure change as in right before a storm. One time long before I began on the diet, I had one triggered by one look in a binocular microscope when the light hit me right in the eye. This was unusual because usually I woke up with the beginning of one of these things.
Luce
Just here for a short while.
I will have to respond to "all of the above" in terms of migraines. I like the "disturbed water" description -- sounds like my visual aura with these things, only alot of mine I would describe as being multi-faceted, kind of like one of those big disco balls with mirrors on each of the many sides of it. Guess my migraines are just organized! Ha!
The smells that weren't there went away when I started on the gf diet. I thought something had died in the attic!
One of the weirdest things about my migraines is that while I was incapacitated with them, I began to notice that the chills I'd have with them weren't at all symetrical in my body. It was weird having a cold sensation on one leg and no where else. Then, it would go away, and I'd feel that cold in another place on my body. It was still like having a chill when you have a fever, only I didn't feel like I had a fever, if that makes any sense.
Now, I've only had migraines from eating nitrates/nitrites (??) in a ham (mailed to me for Thanksgiving) over a period of several days, so food sensitivities aren't the only thing that's in food that can trigger these for me. I think that MSG would do it for me as well, but I don't have much of a likelihood of eating any of that now, thankfully. I will also have a hormone reaction if I don't keep my patches ontime. Then, if I change my sleeping habits drastically, particularly if I sleep way longer than usual, that will do it sometimes. I used to notice that sometimes I'd react during a barometric pressure change as in right before a storm. One time long before I began on the diet, I had one triggered by one look in a binocular microscope when the light hit me right in the eye. This was unusual because usually I woke up with the beginning of one of these things.
Luce
Finally back to you Tex,
I’ve also wondered about the increased intensity of the sun in Arizona as compared to Minnesota. However, these events never have occurred while I have been out in the sun. Nor have they ever occured while on frequent vacations in S. Florida. Could it be some latent sun effect though? Bottom line … who knows?
Regarding the “due to the relatively clean atmosphere” (of Arizona) --. You might be kidding with me there -- but did not include a wink with that statement, --- so I’m not sure?
Years ago that area of the country was known as something of a mecca for people with pulmonary disease and allergy issues. The desert areas, with its dry air and peculiar type of low pollen plant scape, was very kind to people that suffered those type maladies.
Unfortunately, with the great influx of population from all over the country, that has changed BIG TIME. Now days the greater Phoenix area has a reputation of being the allergy capitol of the country. It seems humans can not resist importing along familiar growing things from “home” when they migrate. Consequently, now any kind of tree or plant you might want can be found in the greater Phoenix area - along with all their individual pollens of course.
Coupling all that with the high volume of traffic there now (Phoenix traffic increasingly looks like L.A.) and the unique topography in the valley, there are now many days of poor air quality due to air-inversion.
So any-hoo, --- when persons experience some of these odd happenings such as these migraine events while in that area, the triggering possibilities are endless.
And Allergy Medicine is a huge business there now. HOW SAD IT IS!
My Best,
Gayle
I’ve also wondered about the increased intensity of the sun in Arizona as compared to Minnesota. However, these events never have occurred while I have been out in the sun. Nor have they ever occured while on frequent vacations in S. Florida. Could it be some latent sun effect though? Bottom line … who knows?
Regarding the “due to the relatively clean atmosphere” (of Arizona) --. You might be kidding with me there -- but did not include a wink with that statement, --- so I’m not sure?
Years ago that area of the country was known as something of a mecca for people with pulmonary disease and allergy issues. The desert areas, with its dry air and peculiar type of low pollen plant scape, was very kind to people that suffered those type maladies.
Unfortunately, with the great influx of population from all over the country, that has changed BIG TIME. Now days the greater Phoenix area has a reputation of being the allergy capitol of the country. It seems humans can not resist importing along familiar growing things from “home” when they migrate. Consequently, now any kind of tree or plant you might want can be found in the greater Phoenix area - along with all their individual pollens of course.
Coupling all that with the high volume of traffic there now (Phoenix traffic increasingly looks like L.A.) and the unique topography in the valley, there are now many days of poor air quality due to air-inversion.
So any-hoo, --- when persons experience some of these odd happenings such as these migraine events while in that area, the triggering possibilities are endless.
And Allergy Medicine is a huge business there now. HOW SAD IT IS!
My Best,
Gayle
Gayle,
I have to agree - I wondered why I wrote that, after I re-read it, but I was too lazy to edit it. As you say, the days of pollen-free air are long gone, due to the habits of people who choose to move out to the county, to get away from it all, and then they "tweak" it to death, until it looks almost exactly like the overcrowded, polluted environment that they were in such a big hurry to get away from. 
Actually, I was thinking that since there's much less industrial development in the western states, the upper atmosphere should be clearer, on the average, (away from the population centers). Pollen tends to concentrate at lower levels, and shouldn't reach the upper atmosphere, for the most part. There's still a lot of wide-open country out there in parts of the West. In many eastern states, the industrial centers, (and the population centers), are much closer together, so the upper atmosphere has much more surface activity feeding pollution into it. IOW, I'm thinking that the state of Arizona as a whole, should have less upper-layer air pollution, than most of the other states, (except for a few of the other western states), but I could be wrong, of course.
Thanks for pointing that out.
Tex
I have to agree - I wondered why I wrote that, after I re-read it, but I was too lazy to edit it.
As you say, the days of pollen-free air are long gone, due to the habits of people who choose to move out to the county, to get away from it all, and then they "tweak" it to death, until it looks almost exactly like the overcrowded, polluted environment that they were in such a big hurry to get away from. Actually, I was thinking that since there's much less industrial development in the western states, the upper atmosphere should be clearer, on the average, (away from the population centers). Pollen tends to concentrate at lower levels, and shouldn't reach the upper atmosphere, for the most part. There's still a lot of wide-open country out there in parts of the West. In many eastern states, the industrial centers, (and the population centers), are much closer together, so the upper atmosphere has much more surface activity feeding pollution into it. IOW, I'm thinking that the state of Arizona as a whole, should have less upper-layer air pollution, than most of the other states, (except for a few of the other western states), but I could be wrong, of course.
Thanks for pointing that out.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
Oh for sure, no question about it, leaving low lying and more populated areas to go to higher elevations, does make a difference in air quality as the heavy load of allergens in the valley are diluted at the higher elevation levels.
I do however, also recall seeing photos from space of the huge ash plume in the atmosphere flowing over the Midwest following the last big Mt. St. Helens eruption…so at least some suspended gunk does travel for long distances in the atmosphere.
On to another issue here – Tex, did you recently post regarding the CCFA’s unwillingness to include MC in their foundation? I think there was something to that effect here on the chat a while back?
Well something I recently noticed that may, or may not, be related to the CCFA’s decision to ignore MC may be the fact that the NIH does not include MC in their list of diseases.
See http://health.nih.gov/category/DigestiveSystem
This leads me to wonder if, in the eyes of the foundation, when or if, the government doesn’t officially recognize something – does it officially exist as far (as the Foundation is concerned)??
However --- taking things one step further though I do find the NDDIC, a sub-division of the NIH, including CC.
See http://digestive.niddk.nih.gov/ddisease ... uscolitis/
I find all this to be a very curious situation. What are your ideas on this?
Are we MC sufferers all bound up in politics, laws, and govt. regulations --- as we all have become in so many other areas of our lives?
MY BEST,
Gayle
Oh for sure, no question about it, leaving low lying and more populated areas to go to higher elevations, does make a difference in air quality as the heavy load of allergens in the valley are diluted at the higher elevation levels.
I do however, also recall seeing photos from space of the huge ash plume in the atmosphere flowing over the Midwest following the last big Mt. St. Helens eruption…so at least some suspended gunk does travel for long distances in the atmosphere.
On to another issue here – Tex, did you recently post regarding the CCFA’s unwillingness to include MC in their foundation? I think there was something to that effect here on the chat a while back?
Well something I recently noticed that may, or may not, be related to the CCFA’s decision to ignore MC may be the fact that the NIH does not include MC in their list of diseases.
See http://health.nih.gov/category/DigestiveSystem
This leads me to wonder if, in the eyes of the foundation, when or if, the government doesn’t officially recognize something – does it officially exist as far (as the Foundation is concerned)??
However --- taking things one step further though I do find the NDDIC, a sub-division of the NIH, including CC.
See http://digestive.niddk.nih.gov/ddisease ... uscolitis/
I find all this to be a very curious situation. What are your ideas on this?
Are we MC sufferers all bound up in politics, laws, and govt. regulations --- as we all have become in so many other areas of our lives?
MY BEST,
Gayle
Gayle,
I think that the medical community is simply "ponderous" and not only slow to change, but resistant to change. For many years, it operated as pretty much of a "Good Old Boys Club", where anyone who tried to rock the boat, (such as someone who came up with a revolutionary discovery that proved existing technology to be totally incorrect, or a woman who had the audacity to try to join their ranks), was usually shunned, locked out of the "inner circles", prevented from publishing in the most prestigious publications, etc. I'm not totally sure that the "Good Old Boys Club" is gone, now, but I think that things are somewhat better. (If you doubt what I'm saying, I have a hunch that Polly can shed some light on it).
Anyway, what I'm trying to say, is that I believe that the medical community as a whole, simply hasn't gotten around to going to the trouble of learning about MC, and recognizing it as a legitimate disease, yet. One of these days, they'll get around to it. After all, what's the rush - CC wasn't even described until 1976, and LC was described about four years later. Heck, that's only 30-something years ago.
Consider the information on CC and LC on the the NDDIC site. Look at this section:
I haven't done an actual head count, but it appears to me that we have just about as many members in their 20s, 30s, 40s, and 50s, as we have in their 60s and above. We also have a surprising number of members to register because they have a young child with the disease. Most of them register and never post - I wish more of them would post.
For their part, the CCFA does now recognize that MC is an IBD, and they do list it on their website - they just don't spend any money supporting it. However, until one of our members, (Joan), recently convinced them of their mistake, they actually argued that MC is not an IBD. Shame on them, and good for Joan, for having the patience to call them on that issue.
The medical establishment does not like to revise their descriptions of diseases, once they initially record them. A lot of the prestigious medical institutions quote information about MC on their websites, that has been obsolete for decades. The disease is even incorrectly named. It is not just a disease of the colon, as the name, (colitis), implies - it can affect the entire gastrointestinal tract, and most of the rest of the body, to boot. I seriously doubt that they will ever admit that it is misnamed, but I do hope that one of these decades, they will at least update some of their information on it, and eventually recognize it as a legitimate inflammatory bowel disease.
It seems that, as MC patients, we're the Rodney Dangerfields of inflammatory bowel diseases - we get no respect.
Tex
I think that the medical community is simply "ponderous" and not only slow to change, but resistant to change. For many years, it operated as pretty much of a "Good Old Boys Club", where anyone who tried to rock the boat, (such as someone who came up with a revolutionary discovery that proved existing technology to be totally incorrect, or a woman who had the audacity to try to join their ranks), was usually shunned, locked out of the "inner circles", prevented from publishing in the most prestigious publications, etc. I'm not totally sure that the "Good Old Boys Club" is gone, now, but I think that things are somewhat better. (If you doubt what I'm saying, I have a hunch that Polly can shed some light on it).
Anyway, what I'm trying to say, is that I believe that the medical community as a whole, simply hasn't gotten around to going to the trouble of learning about MC, and recognizing it as a legitimate disease, yet. One of these days, they'll get around to it. After all, what's the rush - CC wasn't even described until 1976, and LC was described about four years later. Heck, that's only 30-something years ago.
Consider the information on CC and LC on the the NDDIC site. Look at this section:
It's been diagnosed in people between 60 and 80 years of age for the last 30 years, simply because the GI docs have traditionally rarely looked for the disease in anyone younger, and you can't find MC, unless you specifically look for it. They're slowly learning, and probably in about another 30 years or so, they'll be able to revise their information on the disease.Who gets collagenous colitis and lymphocytic colitis?
Collagenous colitis is most often diagnosed in people between 60 and 80 years of age. However, some cases have been reported in adults younger than 45 years and in children. Collagenous colitis is diagnosed more often in women than men.
People with lymphocytic colitis are also generally diagnosed between 60 and 80 years of age. Both men and women are equally affected.
I haven't done an actual head count, but it appears to me that we have just about as many members in their 20s, 30s, 40s, and 50s, as we have in their 60s and above. We also have a surprising number of members to register because they have a young child with the disease. Most of them register and never post - I wish more of them would post.
For their part, the CCFA does now recognize that MC is an IBD, and they do list it on their website - they just don't spend any money supporting it. However, until one of our members, (Joan), recently convinced them of their mistake, they actually argued that MC is not an IBD. Shame on them, and good for Joan, for having the patience to call them on that issue.
The medical establishment does not like to revise their descriptions of diseases, once they initially record them. A lot of the prestigious medical institutions quote information about MC on their websites, that has been obsolete for decades. The disease is even incorrectly named. It is not just a disease of the colon, as the name, (colitis), implies - it can affect the entire gastrointestinal tract, and most of the rest of the body, to boot. I seriously doubt that they will ever admit that it is misnamed, but I do hope that one of these decades, they will at least update some of their information on it, and eventually recognize it as a legitimate inflammatory bowel disease.
It seems that, as MC patients, we're the Rodney Dangerfields of inflammatory bowel diseases - we get no respect.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.