Head problems due to sun...what is causing it? Long post

July 4, 2004

Hi,

I have been having trouble with going in the sun. I wasn't having

trouble in the spring and early summer, than one day I stayed out in

the sun a little longer than usual and sweated more than usual on a

very hot day, and the next day I started having a twitching eye and

headaches, etc. etc.

I had an episode of eye twitching due to overuse of the computer

about 6 years ago which resolved from adding magneisum foods into my

diet. I haven't had that since then. I have been trying to address

it with food again, but I can no longer eat a lot of nuts and seeds

like I did the first time. I am adding green drinks, and a small

amount of peanut butter a few times a day. The eye twitching is just

about gone, but I am having trouble resolving the rest of it.

The headaches have not been resolving well and I seem to be feeling

pain around my face, head, and teeth. I also find that my sleep at

night has been more interrupted. Waking often, not sleeping longer

than 3 hours at a time.

Sometimes the pain goes away. It is not excruciating and I am not

taking aspirin for it. As soon as I am the least active it starts to

increase. TV, computer, get up to walk across the room, talking.

Just about anything starts it throbbing.

I am trying to limit all those activities, and alternate them, but

how can you have NO activity all day for days? In the past, similar

episodes have not had this constant a headache as part of the

constellation of symptoms. I would term this a " crash " ,

or " relapse " , but I don't have the bone crushing fatigue that usually

goes along with it. [Thankfully :-)] I am not getting the increase

in muscle pain that I would normally associate with it.

In the past, I would just become immobile and rest rest rest until

all symptoms had resolved and then start all over again trying to get

back to the same " pre-crash " level of activity. Sort of happens that

it is often like starting over again, due to how long you have to

rest sometimes.

I had made a fair amount of progress over the spring, specifically

because I pushed myself into more activity. So I am trying not to

lose all that progress by resting so much that I have to start over.

I wish I understood, what caused the head problems. What was it

about the day I spent outdoors too long that triggered this? Is it a

mineral, like magnesium that is depleted in your sweat? Is it just

your whole system being overwhelmed by the demands of heat? Is it a

byproduct of physical activity that is not able to be cleared by the

body and is damaging the brain?

Is the throbbing in the head an indication of blood rushing to your

head, or is it an absence of blood in your head? Or is it something

else entirely. Does anyone else find themselves trying to figure out

what is happening in their body during all the symptoms we experience?

I did speak to my mito specialist about this. He wants me to see a

Cardiologist to check out how much of a role dysautonomia is

playing. He sounded like he suspected HIGH blood pressure or some

blood pressure abnormality. I usually have low, but not dizziness. I

still don't understand what a Cardiologist has to do with

Dysautonomia? I thought the abnormailty with the autonomic nervous

system was a problem with the nervous system or the brain.

How much do the Mito specialists really know and how much is

speculation? How much do all of you understand what is happening in

your body? Where is the best place to go to find out more?

Has anyone done a lot of personal research about mito? Has anyone

ever looked up any studies that have been done that have been the

basis for the diagnosis and/or understanding of the symptomatology?

Okay, I know, I ask too many questions. I seem to think of a lot of

questions and my process is to just throw them all out there. Sort

of like brainstorming. [g] Please don't let all my questions throw

you. If you see one you can answer just ignore the rest. If my

questions provoke questions of your own, throw those out.

Whiling away the nice sunny day that I can't go out and enjoy....

:-)

Adam

July 4, 2004

Adam

I would check to see if you have allergies or a sinus infection. Heat

definitely stresses the body and humidity makes it worse. My eye twitching

is more related to stress than inbalances, but you might be different and

then I get it as part of the neuropathy that comes and goes. Sweating

depletes sodium in the body. I would suggest good hydration and some sport

drink of some source such as gaterade.

Lightheadedness can be due to low blood pressure, dysautonomia, cardiac

issues or low blood sugar. Try to get up slowly and see if it helps.

For me, reading as much as I can find and going to the umdf conferences has

helped me understand more about what is happening in my body. That's just

me, but it might help you as well.

laurie

>

> Reply-To:

> Date: Sun, 04 Jul 2004 18:51:18 -0000

> To:

> Subject: Head problems due to sun...what is causing it? Long post

>

> Hi,

>

> I have been having trouble with going in the sun. I wasn't having

> trouble in the spring and early summer, than one day I stayed out in

> the sun a little longer than usual and sweated more than usual on a

> very hot day, and the next day I started having a twitching eye and

> headaches, etc. etc.

>

> I had an episode of eye twitching due to overuse of the computer

> about 6 years ago which resolved from adding magneisum foods into my

> diet. I haven't had that since then. I have been trying to address

> it with food again, but I can no longer eat a lot of nuts and seeds

> like I did the first time. I am adding green drinks, and a small

> amount of peanut butter a few times a day. The eye twitching is just

> about gone, but I am having trouble resolving the rest of it.

>

> The headaches have not been resolving well and I seem to be feeling

> pain around my face, head, and teeth. I also find that my sleep at

> night has been more interrupted. Waking often, not sleeping longer

> than 3 hours at a time.

>

> Sometimes the pain goes away. It is not excruciating and I am not

> taking aspirin for it. As soon as I am the least active it starts to

> increase. TV, computer, get up to walk across the room, talking.

> Just about anything starts it throbbing.

>

> I am trying to limit all those activities, and alternate them, but

> how can you have NO activity all day for days? In the past, similar

> episodes have not had this constant a headache as part of the

> constellation of symptoms. I would term this a " crash " ,

> or " relapse " , but I don't have the bone crushing fatigue that usually

> goes along with it. [Thankfully :-)] I am not getting the increase

> in muscle pain that I would normally associate with it.

>

> In the past, I would just become immobile and rest rest rest until

> all symptoms had resolved and then start all over again trying to get

> back to the same " pre-crash " level of activity. Sort of happens that

> it is often like starting over again, due to how long you have to

> rest sometimes.

>

> I had made a fair amount of progress over the spring, specifically

> because I pushed myself into more activity. So I am trying not to

> lose all that progress by resting so much that I have to start over.

>

> I wish I understood, what caused the head problems. What was it

> about the day I spent outdoors too long that triggered this? Is it a

> mineral, like magnesium that is depleted in your sweat? Is it just

> your whole system being overwhelmed by the demands of heat? Is it a

> byproduct of physical activity that is not able to be cleared by the

> body and is damaging the brain?

>

> Is the throbbing in the head an indication of blood rushing to your

> head, or is it an absence of blood in your head? Or is it something

> else entirely. Does anyone else find themselves trying to figure out

> what is happening in their body during all the symptoms we experience?

>

> I did speak to my mito specialist about this. He wants me to see a

> Cardiologist to check out how much of a role dysautonomia is

> playing. He sounded like he suspected HIGH blood pressure or some

> blood pressure abnormality. I usually have low, but not dizziness. I

> still don't understand what a Cardiologist has to do with

> Dysautonomia? I thought the abnormailty with the autonomic nervous

> system was a problem with the nervous system or the brain.

>

> How much do the Mito specialists really know and how much is

> speculation? How much do all of you understand what is happening in

> your body? Where is the best place to go to find out more?

>

> Has anyone done a lot of personal research about mito? Has anyone

> ever looked up any studies that have been done that have been the

> basis for the diagnosis and/or understanding of the symptomatology?

>

> Okay, I know, I ask too many questions. I seem to think of a lot of

> questions and my process is to just throw them all out there. Sort

> of like brainstorming. [g] Please don't let all my questions throw

> you. If you see one you can answer just ignore the rest. If my

> questions provoke questions of your own, throw those out.

>

> Whiling away the nice sunny day that I can't go out and enjoy....

>

> :-)

> Adam

>

> 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.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

July 5, 2004

Hi ,

Thanks for the input. I had a few questions about your post. When

you say probably electrolyte related, since the first time it was a

problem was 5 weeks ago wouldn't it have worked itself out by now?

Yesterday when I was out, I had a hat on, I was under an umbrella, it

was early in the morning. I did get a little hot and sweaty, but I

came right into the air conditioning and drank a lot of fluid

yesterday as well as non fat yogurt shakes with

bananas/mango/raspberries and tomato soup later. I guess I don't

know what more I could have done for myself.

Does this mean that sweating is dangerous for someone with mito?

Should I be avoiding it completely? That doesn't sound healthy

either to never sweat.

If this is a common problem for mito patients, then I would think it

would be hard to avoid electrolyte imbalances. I have not in the

past seen any test results that suggested I have an electrolyte

imbalance, but I suppose that doesn't always mean anything. But if

it is common, then I would think the mito docs have developed some

strategy to address them, I wonder how many of you have electrolyte

imbalances and what are they usually triggered by? What do the docs

do for you when it happens? How do you know that is the problem?

I am going to try some Gatorade today and increase sodium foods. I

am going to continue with green drinks and peanut butter to try to

get more magnesium. I don't know if that will help at all, but can't

think of anything else to try.

Do any of you get help from your doctors when you go through

something like this? What kind of help do you get?

Yes, I am very familiar with the " 2% rule " . [g]

What I am finding odd, is that I don't have crushing fatigue like I

normally would have in a crash. Just these darn headaches. So I

wouldn't suspect I had less ATP right now. I wonder if I should be

tested while I am having these headaches to see if some imbalance can

be caught. Does anyone else find they have that approach? I don't

know what kind of tests. Blood work doesn't usually give many clues

for me.

I find your referral to the hormones interesting. I just had my

Thyroid meds reduced about 3 months ago, so that is different, and I

have a low vit D level. Which I was surprised to learn is a

hormone.? I read that yesterday anyway. If I have low vit D

wouldn't going in the sun increase it? I would have thought that

would have helped.

As for magnesium, I don't think I have had it checked in the urine.

My blood levels are normal though last time they checked. So was

calcium. I also just had my amino acids retested and they are now in

the normal range. So they clearly feel the low levels of the last

two tests were definitely from diet. I was having a lot of trouble

eating.

Usually I am content to just rest and I have confidence that sooner

or later it will resolve. For some reason this time I don't have

that sense. It seems like something is wrong that needs to be fixed

and that as long as it is like this it may be doing other damage. I

also get a sense that my body is having a hard time correcting what

ever it is. I think one reason I feel this way is that usually if I

can manage to get some decent sleep I feel better, but lately, when I

fall asleep, I wake up feeling worse than before I fell asleep with

my head killing me. Food isn't making them better either, which is

another thing that usually helps.

Thanks for the post and the explanations and ideas to think about. I

appreciate it.

:-)

Adam

> I would think that it was probably electrolyte related. Also, any

time any > of us get something like heat stroke, take meds, or get

sick, we usually > fall in the 2% category of " something else will

also go horribly awry " > or " 2% of the population will also

experience THESE symptoms " .

Of course, if you> already have some body temperature control

problems, being out in the sun is> going to affect it. There is

one other thought as well, but most likely> pretty unlikely, there

are certain hormones in the body that are affected by> sunlight, in

which it helps determine how many are made.

Since ATP (the> stuff mitochondria helps make that is the energy

currency of the body) is> involved in any end of the line hormone

product of the body pretty much, we> are apt to be making " wrong "

amounts of just about any of these. It isnt the full story of>

course, but does affect them. Others will probably have other

suggestions.

>

> BTW do you tend to leak magnesium, or just store it in some weird

area of> your body like your hair and nails instead of using it? By

leaking I mean it> going straight through your kidneys. Or do you

know? I do that with> potassium and folic acid.

>

July 5, 2004

I would think that it was probably electrolyte related. Also, any time any

of us get something like heat stroke, take meds, or get sick, we usually

fall in the 2% category of " something else will also go horribly awry "

or " 2% of the population will also experience THESE symptoms " . The problem

is, we arent as capable of recovering as the average human being because we

are like a battery operated toy that has batteries that are running out of

juice ie low battery. Also, on the autonomic thing, that means the things

that are run without conscious control, like heartbeat, breathing,

temperature control, etc. It is ruled by a certain part of your brain, that

isnt considered the part that normally controls thinking, such as I will now

pick up such and such item, and then the body obeys. Of course, if you

already have some body temperature control problems, being out in the sun is

going to affect it. There is one other thought as well, but most likely

pretty unlikely, there are certain hormones in the body that are affected by

sunlight, in which it helps determine how many are made. Since ATP (the

stuff mitochondria helps make that is the energy currency of the body) is

involved in any end of the line hormone product of the body pretty much, we

are apt to be making " wrong " amounts of just about any of these. Helps

explain why so many of us have mental and fertility issues. And growth

issues. And thyroid and diabetic issues. It isnt the full story of

course, but does affect them. Others will probably have other suggestions.

BTW do you tend to leak magnesium, or just store it in some weird area of

your body like your hair and nails instead of using it? By leaking I mean it

going straight through your kidneys. Or do you know? I do that with

potassium and folic acid.

> Hi,

>

> I have been having trouble with going in the sun. I wasn't having

> trouble in the spring and early summer, than one day I stayed out in

> the sun a little longer than usual and sweated more than usual on a

> very hot day, and the next day I started having a twitching eye and

> headaches, etc. etc.

>

> I had an episode of eye twitching due to overuse of the computer

> about 6 years ago which resolved from adding magneisum foods into my

> diet. I haven't had that since then. I have been trying to address

> it with food again, but I can no longer eat a lot of nuts and seeds

> like I did the first time. I am adding green drinks, and a small

> amount of peanut butter a few times a day. The eye twitching is just

> about gone, but I am having trouble resolving the rest of it.

>

> The headaches have not been resolving well and I seem to be feeling

> pain around my face, head, and teeth. I also find that my sleep at

> night has been more interrupted. Waking often, not sleeping longer

> than 3 hours at a time.

>

> Sometimes the pain goes away. It is not excruciating and I am not

> taking aspirin for it. As soon as I am the least active it starts to

> increase. TV, computer, get up to walk across the room, talking.

> Just about anything starts it throbbing.

>

> I am trying to limit all those activities, and alternate them, but

> how can you have NO activity all day for days? In the past, similar

> episodes have not had this constant a headache as part of the

> constellation of symptoms. I would term this a " crash " ,

> or " relapse " , but I don't have the bone crushing fatigue that usually

> goes along with it. [Thankfully :-)] I am not getting the increase

> in muscle pain that I would normally associate with it.

>

> In the past, I would just become immobile and rest rest rest until

> all symptoms had resolved and then start all over again trying to get

> back to the same " pre-crash " level of activity. Sort of happens that

> it is often like starting over again, due to how long you have to

> rest sometimes.

>

> I had made a fair amount of progress over the spring, specifically

> because I pushed myself into more activity. So I am trying not to

> lose all that progress by resting so much that I have to start over.

>

> I wish I understood, what caused the head problems. What was it

> about the day I spent outdoors too long that triggered this? Is it a

> mineral, like magnesium that is depleted in your sweat? Is it just

> your whole system being overwhelmed by the demands of heat? Is it a

> byproduct of physical activity that is not able to be cleared by the

> body and is damaging the brain?

>

> Is the throbbing in the head an indication of blood rushing to your

> head, or is it an absence of blood in your head? Or is it something

> else entirely. Does anyone else find themselves trying to figure out

> what is happening in their body during all the symptoms we experience?

>

> I did speak to my mito specialist about this. He wants me to see a

> Cardiologist to check out how much of a role dysautonomia is

> playing. He sounded like he suspected HIGH blood pressure or some

> blood pressure abnormality. I usually have low, but not dizziness. I

> still don't understand what a Cardiologist has to do with

> Dysautonomia? I thought the abnormailty with the autonomic nervous

> system was a problem with the nervous system or the brain.

>

> How much do the Mito specialists really know and how much is

> speculation? How much do all of you understand what is happening in

> your body? Where is the best place to go to find out more?

>

> Has anyone done a lot of personal research about mito? Has anyone

> ever looked up any studies that have been done that have been the

> basis for the diagnosis and/or understanding of the symptomatology?

>

> Okay, I know, I ask too many questions. I seem to think of a lot of

> questions and my process is to just throw them all out there. Sort

> of like brainstorming. [g] Please don't let all my questions throw

> you. If you see one you can answer just ignore the rest. If my

> questions provoke questions of your own, throw those out.

>

> Whiling away the nice sunny day that I can't go out and enjoy....

>

> :-)

> Adam

>

July 5, 2004

Hi Laurie,

Thanks for your post. :-)

I will try the Gatorade today and I am planning on increasing the

sodium foods. I had some celery/Kale/carrot juice already this

morning. I woke up with a worse headache after sleeping this morning,

which is unusual for me.

I didn't say I had lightheadedness, I said I didn't. I actually did

feel a slight bit of lightheadedness once when I was outside though

it was fleeting and haven't had it since. Yes, I am careful to eat

every 3-4 hrs and always eat protein with carbs and thankfully the

hypoglycemia has been pretty good lately.

How do you manage to do all that reading? It doesn't bother you?

Adam

My Mito specialist has me scheduled to see a Cardiologist.

> Adam

>

> I would check to see if you have allergies or a sinus infection.

Heat> definitely stresses the body and humidity makes it worse. My

eye twitching> is more related to stress than inbalances, but you

might be different and> then I get it as part of the neuropathy that

comes and goes. Sweating> depletes sodium in the body. I would

suggest good hydration and some sport> drink of some source such as

gaterade.

>

> Lightheadedness can be due to low blood pressure, dysautonomia,

cardiac> issues or low blood sugar. Try to get up slowly and see if

it helps.

>

> For me, reading as much as I can find and going to the umdf

conferences has> helped me understand more about what is happening in

my body. That's just> me, but it might help you as well.

>

> laurie

>

July 5, 2004

Hi, Adam

A thought about heat.

I have been watching my symptoms closely for the last 2 years, and I

can now definitely say that I get a horrible crash when I get at all

overheated, sun or shade. I never am able to stay outdoors, even in

the shade, to the point of sweating. If I work (very mild) in the

garden when it is over 72 or so, I just wilt, and my brain stops

functioning totally. I cannot remember what I have done, or answer a

simple question someone asks me. I have horrible fatigue, and am just

generally miserable. If i cannot cool off immediately when I get to

that state, I feel like I will pass out (has not happened yet) and

after i get badly overheated, I MUST sleep, and sleep like I have been

drugged, for hours. The sleep fatigue just overtakes me completely.

(This is different from my usual routine. I typically fight not to nap

in the daytime, because then my nighttime sleep is not good.)

In thinking back, I can attribute several episodes of severe problems

when I was traveling to heat, and I always got tired when I was in the

sun, even as a child. I just thought it was " normal " .

Dr. Cohen refers to heat as a stressor in one of his articles on Adult

MIto. That article made me watchful to see what heat does to me, and I

am now absolutely convinced that it is a major trigger for me. I even

have taken my quilt off my bead, and sleep cooler in the winter.

There have been other posts about heat intollerance here. I do believe

it is something to consider for many of us. Another drag, but something

that we can try to control, unlike so many other things that we seem

not to be able to know or control.

I do appreciate all the people who post here, with questions and their

thoughts. Thank you everyone for sharing.

Sunny

>

> I have been having trouble with going in the sun. I wasn't having

> trouble in the spring and early summer, than one day I stayed out in

> the sun a little longer than usual and sweated more than usual on a

> very hot day, and the next day I started having a twitching eye and

> headaches, etc. etc.

>

> I had an episode of eye twitching due to overuse of the computer

> about 6 years ago which resolved from adding magneisum foods into my

> diet. I haven't had that since then. I have been trying to address

> it with food again, but I can no longer eat a lot of nuts and seeds

> like I did the first time. I am adding green drinks, and a small

> amount of peanut butter a few times a day. The eye twitching is just

> about gone, but I am having trouble resolving the rest of it.

>

> The headaches have not been resolving well and I seem to be feeling

> pain around my face, head, and teeth. I also find that my sleep at

> night has been more interrupted. Waking often, not sleeping longer

> than 3 hours at a time.

>

> Sometimes the pain goes away. It is not excruciating and I am not

> taking aspirin for it. As soon as I am the least active it starts to

> increase. TV, computer, get up to walk across the room, talking.

> Just about anything starts it throbbing.

>

> I am trying to limit all those activities, and alternate them, but

> how can you have NO activity all day for days? In the past, similar

> episodes have not had this constant a headache as part of the

> constellation of symptoms. I would term this a " crash " ,

> or " relapse " , but I don't have the bone crushing fatigue that usually

> goes along with it. [Thankfully :-)] I am not getting the increase

> in muscle pain that I would normally associate with it.

>

> In the past, I would just become immobile and rest rest rest until

> all symptoms had resolved and then start all over again trying to get

> back to the same " pre-crash " level of activity. Sort of happens that

> it is often like starting over again, due to how long you have to

> rest sometimes.

>

> I had made a fair amount of progress over the spring, specifically

> because I pushed myself into more activity. So I am trying not to

> lose all that progress by resting so much that I have to start over.

>

> I wish I understood, what caused the head problems. What was it

> about the day I spent outdoors too long that triggered this? Is it a

> mineral, like magnesium that is depleted in your sweat? Is it just

> your whole system being overwhelmed by the demands of heat? Is it a

> byproduct of physical activity that is not able to be cleared by the

> body and is damaging the brain?

>

> Is the throbbing in the head an indication of blood rushing to your

> head, or is it an absence of blood in your head? Or is it something

> else entirely. Does anyone else find themselves trying to figure out

> what is happening in their body during all the symptoms we experience?

>

> I did speak to my mito specialist about this. He wants me to see a

> Cardiologist to check out how much of a role dysautonomia is

> playing. He sounded like he suspected HIGH blood pressure or some

> blood pressure abnormality. I usually have low, but not dizziness. I

> still don't understand what a Cardiologist has to do with

> Dysautonomia? I thought the abnormailty with the autonomic nervous

> system was a problem with the nervous system or the brain.

>

> How much do the Mito specialists really know and how much is

> speculation? How much do all of you understand what is happening in

> your body? Where is the best place to go to find out more?

>

> Has anyone done a lot of personal research about mito? Has anyone

> ever looked up any studies that have been done that have been the

> basis for the diagnosis and/or understanding of the symptomatology?

>

> Okay, I know, I ask too many questions. I seem to think of a lot of

> questions and my process is to just throw them all out there. Sort

> of like brainstorming. [g] Please don't let all my questions throw

> you. If you see one you can answer just ignore the rest. If my

> questions provoke questions of your own, throw those out.

>

> Whiling away the nice sunny day that I can't go out and enjoy....

>

> :-)

> Adam

>

> 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.

>

> Personal attacks are not permitted on the list and anyone who sends

> one is automatically moderated or removed depending on the severity of

> the attack.

>

July 5, 2004

Hi Adam;

I have a similar problem – if I am in the sun without plenty of

water, I can experience heat exhaustion very quickly. Heat Exhaustion can

give you a headache, extreme fatigue, no sweating (until you come in out

of the sun and than you sweat profusely, dizziness, etc…) Perhaps, that

is what you were experiencing the other day: heat exhaustion. I notice

it comes on more readily if I’m already fatigued. I also have problems

with hypoglycemia and low blood pressure – so eat 5 to 6 times a day,

which seems to help. Also, I like to hike, I refuse to give up things I

enjoy doing, and although I don’t hike allot, I still will get out there,

and I have to be careful of the heat exhaustion. I also have problems in

extreme cold – from what I have read, it seems to be a common problem that

people with mito have internal bodily temperature control problems. Yes,

you are correct, you are suppose to sweat – if you are not sweating (and

others around you are)than you are probably experiencing heat exhaustion

or you are pretty lean! Oh, when I’m feeling this way, I get into air

conditioning, drink cold water slowly, and I eat some sugar ( like orange

juice or a cookie) to get my glucose level up quickly – these are things

that work for me, I would suggest you find what will work for you. This

disease seems to express itself differently for every individual, you have

to find what works for you – and hearing what others say of what works for

them may give you a reference point to explore. Good luck.

Clara

CJW526@...

Re: Head problems due to sun...what is causing it? Long

post