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Celia,

I know that eye pain, i havent had it much lately, but have had it alot in the past. My mom has recently been complaining about eye pain also and compared it to how shes felt with the flu which is weird. Shes also had blurry/double vision lately and her PCP wants her to see an opthomologist. I'd suggest you checking into that too, just to make sure its not your body giving you a warning to something serious. I seem to get this alot when i use my eyes more and when ptosis which i get, right after it resolves and sometimes before it. I usually just use the warm cloth method over the eyes and that helps some. Also, depends whats causing it, but might be some eye drops that could help. Hope you figure out whats causing it, please just get checked by an eye dr. let us know what they say.

take care,

adrienne

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Hi Celia,

You might have heard me mention it when I talked about my oxygen use. I have had constant eye pain since I was in my 20's, I have double vision for one thing, so my eyes try hard to track. But the muscles behind my eyes are what hurts so bad, to the point of sometimes just having to hold my hands over my eyes to stop them from moving, your eye balls move allmost constantly even while asleep. In fact REM sleep means rapid eye movement, and that occurs while you are dreaming.

I am followed by a neuro-opthamlogist for the situation. They specialize in disease of the eye muscle and nerve.

When I started the oxygen therapy, my pain in my eyse is almost nil. They still get tired, and still hurt, but I have only had severe pain 3 or 4 times in 3 months. They also look much better, not all dull and sick looking since the being on oxygen. Now why that is I have no idea. I am going to be very interested to see what the Neuro-opthmalogist has to say about it. Perhaps we will never know why.

smiling,

To:

Sent: Thursday, January 09, 2003 12:44 PM

Subject: Eye Pain

Dear all, it seems the more I learn on this site the more questions I have!! Someone mentioned eye pain. I have had eye(muscle) pain intermittantly for some time but no doctor has ever given me an explanation. I don't have ptosis or anything but the eye pain feels like I had the flu. Does anyone else have this and/or have an explanation. Tanks, CeliaMedical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.

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As far as neuro-opthamlogists go, I have to tell you my personal experience,

but this is NOT to say this is the norm. My dogs vet would have given me a

better exam than the one I went to and I did some investigating.

Neuro-opthamlogists

have NO additional training that a regular opthamlogist doesn't have. They

just have a added interest in the neuro end of things, but don't have more

knowledge.

When I had my sleep study, they told me even though I slept, I had virtually NO

REM sleep and thought that was very strange. Anyone else ever been told that

after a sleep study?

Young wrote:

> Hi Celia,

>

> You might have heard me mention it when I talked about my oxygen use. I

> have had constant eye pain since I was in my 20's, I have double vision

> for one thing, so my eyes try hard to track. But the muscles behind my

> eyes are what hurts so bad, to the point of sometimes just having to

> hold my hands over my eyes to stop them from moving, your eye balls move

> allmost constantly even while asleep. In fact REM sleep means rapid eye

> movement, and that occurs while you are dreaming.

> I am followed by a neuro-opthamlogist for the situation. They specialize

> in disease of the eye muscle and nerve.

> When I started the oxygen therapy, my pain in my eyse is almost nil.

> They still get tired, and still hurt, but I have only had severe pain 3

> or 4 times in 3 months. They also look much better, not all dull and

> sick looking since the being on oxygen. Now why that is I have no

> idea. I am going to be very interested to see what the

> Neuro-opthmalogist has to say about it. Perhaps we will never know why.

>

>

> smiling,

>

>

> >

>

> To: <mailto: >

> Sent: Thursday, January 09, 2003 12:44 PM

> Subject: Eye Pain

>

> Dear all, it seems the more I learn on this site the more questions I

> have!! Someone mentioned eye pain. I have had eye(muscle) pain

> intermittantly for some time but no doctor has ever given me an

> explanation. I don't have ptosis or anything but the eye pain feels

> like I had the flu. Does anyone else have this and/or have an

> explanation. Tanks, Celia

>

>

> Medical advice, information, opinions, data and statements contained

> herein are not necessarily those of the list moderators. The author

> of this e mail is entirely responsible for its content. List members

> are reminded of their responsibility to evaluate the content of the

> postings and consult with their physicians regarding changes in

> their own treatment.

>

>

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I was under the impression that a neuro-opthamalogist is a neurologist who is also a ophtmalogist. A knowledge that you really do need them to have when you are dealing with a eye problem caused from muscle disease. I know mine is very familiar with Mito and McArdles' disease, which most doctors have never even heard of. I guess it can be like anything, some are terrible and some are great. I am very impressed with mine. In fact when I was at the library one time looking up something I just happened to come across his name in the leading doctors of the world. I was VERY impressed. I told him about it once and he just shrugged and laughed it off, he is just a very humble man. I really lucked out in all the doctors that are treating me.

As far as the sleep study goes, one of mine showed a very minimal REM stage, but it did show some.

Smiling,

Eye Pain> > Dear all, it seems the more I learn on this site the more questions I> have!! Someone mentioned eye pain. I have had eye(muscle) pain> intermittantly for some time but no doctor has ever given me an> explanation. I don't have ptosis or anything but the eye pain feels> like I had the flu. Does anyone else have this and/or have an> explanation. Tanks, Celia> > > Medical advice, information, opinions, data and statements contained> herein are not necessarily those of the list moderators. The author> of this e mail is entirely responsible for its content. List members> are reminded of their responsibility to evaluate the content of the> postings and consult with their physicians regarding changes in> their own treatment.> >

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I was under the impression that a neuro-opthamalogist is a neurologist who is also a ophtamalogist. A knowledge that you really do need them to have when you are dealing with a eye problem caused from muscle disease. I know mine is familiar with Mito and McArdles' disease, which most doctors have never even heard of. I guess it can be like anything, some are terrible and some are great. I am very impressed with mine. In fact when I was at the library one time looking up something I just happened to come across his name in the leading doctors of the world. I was VERY impressed. I told him about it once and he just shrugged and laughed it off, he is just a very humble man. My exams are very thorough and doctors under him in training have been called in so they can see what my eyes look like. I have been in his office when he had received conference calls from Switzerland and Italy and discussed me with them, so I know he has not taken my case lightly at all. He also has pictures of my eyes in my chart. I had to warn him though if I ever saw those popeyes on the front of some trash paper while waiting in a check out line that I was really going to be upset!!! hahaha so, there are some great doctors out there, even if they are far and few apart.

I really lucked out in all the doctors that are treating me. I am very blessed.

As far as the sleep study goes, one of mine showed a very minimal REM stage, but it did show some. But I never have the normal amount in any of them.

Smiling,

Eye Pain> > Dear all, it seems the more I learn on this site the more questions I> have!! Someone mentioned eye pain. I have had eye(muscle) pain> intermittantly for some time but no doctor has ever given me an> explanation. I don't have ptosis or anything but the eye pain feels> like I had the flu. Does anyone else have this and/or have an> explanation. Tanks, Celia> > > Medical advice, information, opinions, data and statements contained> herein are not necessarily those of the list moderators. The author> of this e mail is entirely responsible for its content. List members> are reminded of their responsibility to evaluate the content of the> postings and consult with their physicians regarding changes in> their own treatment.> >

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Celia

You might want to try artificial tears. Normal tearing decreases with age and is an autonomic system event, so dry eyes are common in older people and also those with mito. Just because your eyes water doesn't mean they can't be dry. I know it sounds silly, but I have found it to be true. It is a cheap and easy fix, if that is your problem.

laurie

"

Reply-To:

Date: Thu, 09 Jan 2003 17:44:05 -0000

To:

Subject: Eye Pain

Dear all, it seems the more I learn on this site the more questions I

have!! Someone mentioned eye pain. I have had eye(muscle) pain

intermittantly for some time but no doctor has ever given me an

explanation. I don't have ptosis or anything but the eye pain feels

like I had the flu. Does anyone else have this and/or have an

explanation. Tanks, Celia

Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.

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Dear Adrienne, , and Laurie, Thanks you all for the

answers to my question about eye pain. I don;t think it is dry eyes-

the pain seems to be muscular , coming from behind my eyes. I have

only ever asked the opthmologistand pcp not the neurologist about it,

so maybe I should try him/ My physio suggested it could relate to my

neck problems(spurs , weak muscles etc). That is interesting that one

could have dry eyes and yet still tear (which I do,

excessively!)Thanks again, Celia

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Celia,

I just want to let you know that I am currently

dealing with the same thing. I haven't sought an eye

doctor about it but believe it's something I need to

do soon.

I'm really concerned that I'm starting to have these

eye problems since I'm already deaf but just taking

one day at a time. I'm feeling what seems like muscle

pain behind one eye in particular. I'm also getting

some stabbing pains in the eye itself.

Alice

--- " cghng888

wrote:

> Dear Adrienne, , and Laurie, Thanks

> you all for the

> answers to my question about eye pain. I don;t think

> it is dry eyes-

> the pain seems to be muscular , coming from behind

> my eyes. I have

> only ever asked the opthmologistand pcp not the

> neurologist about it,

> so maybe I should try him/ My physio suggested it

> could relate to my

> neck problems(spurs , weak muscles etc). That is

> interesting that one

> could have dry eyes and yet still tear (which I do,

> excessively!)Thanks again, Celia

>

>

> Medical advice, information, opinions, data and

> statements contained herein are not necessarily

> those of the list moderators. The author of this e

> mail is entirely responsible for its content. List

> members are reminded of their responsibility to

> evaluate the content of the postings and consult

> with their physicians regarding changes in their own

> treatment.

>

>

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Celia

The way my eye doctor explained it was that your body tears (like when you cry) when your eyes are dry, but it isn't put where it is needed. My eyes are dry and must confess that I don't use the artificial tears as much as I am suppose to and yet I have dried tears in the corners of my eyes in the morning.

laurie

"

Reply-To:

Date: Fri, 10 Jan 2003 19:51:59 -0000

To:

Subject: re: eye Pain

Dear Adrienne, , and Laurie, Thanks you all for the

answers to my question about eye pain. I don;t think it is dry eyes-

the pain seems to be muscular , coming from behind my eyes. I have

only ever asked the opthmologistand pcp not the neurologist about it,

so maybe I should try him/ My physio suggested it could relate to my

neck problems(spurs , weak muscles etc). That is interesting that one

could have dry eyes and yet still tear (which I do,

excessively!)Thanks again, Celia

Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.

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Hi Celia,

I am also seeing that the more I post on the site and read, the more questions I have. I see that the more I see what others are saying, the more of my symptoms are mito related. Also, the articles by Cohen and Gold helped me with understanding my symptoms and the disease.

My neuro just told me my eye pain was migraines. He gave me a script (not sure what the name is) and a paper that lists foods that can cause migraine.

But someone e-mailed me that Riboflavin was the told to be the best for this, (one of the famous mito docs). I will try it as all Rx drugs bother me, and post on it soon.

God bless,

Hazelpone

Eye Pain

Dear all, it seems the more I learn on this site the more questions I have!! Someone mentioned eye pain. I have had eye(muscle) pain intermittantly for some time but no doctor has ever given me an explanation. I don't have ptosis or anything but the eye pain feels like I had the flu. Does anyone else have this and/or have an explanation. Tanks, CeliaMedical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.

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Share on other sites

Hi Celia,

I am also seeing that the more I post on the site and read, the more questions I have. I see that the more I see what others are saying, the more of my symptoms are mito related. Also, the articles by Cohen and Gold helped me with understanding my symptoms and the disease.

My neuro just told me my eye pain was migraines. He gave me a script (not sure what the name is) and a paper that lists foods that can cause migraine.

But someone e-mailed me that Riboflavin was the told to be the best for this, (one of the famous mito docs). I will try it as all Rx drugs bother me, and post on it soon.

God bless,

Hazelpone

Eye Pain

Dear all, it seems the more I learn on this site the more questions I have!! Someone mentioned eye pain. I have had eye(muscle) pain intermittantly for some time but no doctor has ever given me an explanation. I don't have ptosis or anything but the eye pain feels like I had the flu. Does anyone else have this and/or have an explanation. Tanks, CeliaMedical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.

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The riboflavin (B2) needs to be taken on a daily basis and can take up to a 2 or

3 months

to see a difference. It has drastically cut down on the frequency and intensity

of the headaches I do still get. The same goes for my 13 year old daughter.

I hope I helps you too. It is sure cheaper and better for you than the drugs

to take after you get a migraine.

Hazelpone wrote:

> Hi Celia,

>

> I am also seeing that the more I post on the site and read, the more

> questions I have. I see that the more I see what others are saying, the

> more of my symptoms are mito related. Also, the articles by Cohen and

> Gold helped me with understanding my symptoms and the disease.

>

> My neuro just told me my eye pain was migraines. He gave me a script

> (not sure what the name is) and a paper that lists foods that can cause

> migraine.

>

> But someone e-mailed me that Riboflavin was the told to be the best for

> this, (one of the famous mito docs). I will try it as all Rx drugs

> bother me, and post on it soon.

>

> God bless,

> Hazelpone

>

> Eye Pain

>

> Dear all, it seems the more I learn on this site the more questions I

> have!! Someone mentioned eye pain. I have had eye(muscle) pain

> intermittantly for some time but no doctor has ever given me an

> explanation. I don't have ptosis or anything but the eye pain feels

> like I had the flu. Does anyone else have this and/or have an

> explanation. Tanks, Celia

>

>

> Medical advice, information, opinions, data and statements contained

> herein are not necessarily those of the list moderators. The author

> of this e mail is entirely responsible for its content. List members

> are reminded of their responsibility to evaluate the content of the

> postings and consult with their physicians regarding changes in

> their own treatment.

>

>

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Share on other sites

The riboflavin (B2) needs to be taken on a daily basis and can take up to a 2 or

3 months

to see a difference. It has drastically cut down on the frequency and intensity

of the headaches I do still get. The same goes for my 13 year old daughter.

I hope I helps you too. It is sure cheaper and better for you than the drugs

to take after you get a migraine.

Hazelpone wrote:

> Hi Celia,

>

> I am also seeing that the more I post on the site and read, the more

> questions I have. I see that the more I see what others are saying, the

> more of my symptoms are mito related. Also, the articles by Cohen and

> Gold helped me with understanding my symptoms and the disease.

>

> My neuro just told me my eye pain was migraines. He gave me a script

> (not sure what the name is) and a paper that lists foods that can cause

> migraine.

>

> But someone e-mailed me that Riboflavin was the told to be the best for

> this, (one of the famous mito docs). I will try it as all Rx drugs

> bother me, and post on it soon.

>

> God bless,

> Hazelpone

>

> Eye Pain

>

> Dear all, it seems the more I learn on this site the more questions I

> have!! Someone mentioned eye pain. I have had eye(muscle) pain

> intermittantly for some time but no doctor has ever given me an

> explanation. I don't have ptosis or anything but the eye pain feels

> like I had the flu. Does anyone else have this and/or have an

> explanation. Tanks, Celia

>

>

> Medical advice, information, opinions, data and statements contained

> herein are not necessarily those of the list moderators. The author

> of this e mail is entirely responsible for its content. List members

> are reminded of their responsibility to evaluate the content of the

> postings and consult with their physicians regarding changes in

> their own treatment.

>

>

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Hazel

There has been research done and some folks need to take more than the 400 mg. I wouldn't do that without a doctor's okay. I also have an article about magnesium and migraines. I will try to copy and paste it in another post.

laurie

Reply-To:

Date: Sun, 12 Jan 2003 16:32:55 -0500

To: < >

Subject: Re: Eye Pain

Hi Celia,

I am also seeing that the more I post on the site and read, the more questions I have. I see that the more I see what others are saying, the more of my symptoms are mito related. Also, the articles by Cohen and Gold helped me with understanding my symptoms and the disease.

My neuro just told me my eye pain was migraines. He gave me a script (not sure what the name is) and a paper that lists foods that can cause migraine.

But someone e-mailed me that Riboflavin was the told to be the best for this, (one of the famous mito docs). I will try it as all Rx drugs bother me, and post on it soon.

God bless,

Hazelpone

Eye Pain

Dear all, it seems the more I learn on this site the more questions I

have!! Someone mentioned eye pain. I have had eye(muscle) pain

intermittantly for some time but no doctor has ever given me an

explanation. I don't have ptosis or anything but the eye pain feels

like I had the flu. Does anyone else have this and/or have an

explanation. Tanks, Celia

Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.

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Share on other sites

Hazel

There has been research done and some folks need to take more than the 400 mg. I wouldn't do that without a doctor's okay. I also have an article about magnesium and migraines. I will try to copy and paste it in another post.

laurie

Reply-To:

Date: Sun, 12 Jan 2003 16:32:55 -0500

To: < >

Subject: Re: Eye Pain

Hi Celia,

I am also seeing that the more I post on the site and read, the more questions I have. I see that the more I see what others are saying, the more of my symptoms are mito related. Also, the articles by Cohen and Gold helped me with understanding my symptoms and the disease.

My neuro just told me my eye pain was migraines. He gave me a script (not sure what the name is) and a paper that lists foods that can cause migraine.

But someone e-mailed me that Riboflavin was the told to be the best for this, (one of the famous mito docs). I will try it as all Rx drugs bother me, and post on it soon.

God bless,

Hazelpone

Eye Pain

Dear all, it seems the more I learn on this site the more questions I

have!! Someone mentioned eye pain. I have had eye(muscle) pain

intermittantly for some time but no doctor has ever given me an

explanation. I don't have ptosis or anything but the eye pain feels

like I had the flu. Does anyone else have this and/or have an

explanation. Tanks, Celia

Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.

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