Re: Re: muscle cramping & head pain

March 2, 2005

Kim

I get the sharp stabbing pains (anywhere in my body, including my head) and

was told it was a form of neuropathy (nerves firing when they weren't told

to do so). Of course this was after ruling everything else out.

laurie

>

> Reply-To:

> Date: Wed, 02 Mar 2005 13:35:57 -0000

> To:

> Subject: Re: muscle cramping & head pain

>

>> I always feel it is a muscle in my head cramping, and it always

>> goes away like a cramp would.

>> Sunny

>

> Sunny,

> Mine isn't anything like a cramp. It sharp stabbing and I just have

> to wait it out.

> Kim

>

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March 2, 2005

I have the muscle pains in my legs and feet, as you described. I really don't

know what was going on with them until recently as I now starting to get the

feeling back in them. I had something with my right foot and leg before, but

couldn't narrow it down due to severe pheripheral neurothapy in both legs.

After I was taken off all my parkinson's meds (due to a mis-diagnosis in 2001)

the feeling is coming back in them and now I have the pains, but at least I know

they are there. I also had purchased a Antodyne home thereary machine for the

neuropathy, but the relief was only temporary until my current neurologist put

me on

Neurotin and it has also helped with the foot and leg pains. I also have the

problem with the right side of my face and right eye. It sometimes feels like

someone is stabbing me in my right wyw with a sharp needle. The worst

experience was when the wind was blowing har the other day and I was outside

waiting on the Topeka Transit Lift to pick me up for my opthamalogist appt as I

have narrow angle glaucoma in my right eye, which does not raise the pressure in

the eye and is not supposed to cause pain in the eye, I had to vitually take off

my glasses cover my eye with my hand and go back inside my apt to wait) even

though the Lift was across the street picking up a lady over there. The eye

doctor said I have trigeminal neuralgia in the right side of my face and my

right eye. The eye pains come and go, only lasting seconds but they might recur

as many as maybe 200 or more times a day. He said the Neurotin I am taking for

severe pheripheral neuropathy in both of my legs should also

take care of the eye pain. I am

so glad that the pain doesn't stay long. I also seem to have my my draw of

something as I look terrible in pictures, it's like I am making a face at

someone. This is a strange and new thing that has started, but " this to shall

come to pass " . The Lord has been kind to me by allowing

Dr. Baker to speak up and get me a different neurologist that cares about his

patients, who agreed wholeheartedly with Dr. Baker that I definitely do not and

never did have Parkinsons disease. I am so very relieved that I am off of all

of the Parkinsons meds and I am able to function and feel so much better than

when I was still taking medications that I did not need and were doing damage to

my health. Dolores

z39z@... wrote:

I have a general and perhaps dumb question. Is muscle cramping a common

experience with mito? I sometimes get very severe cramps - in foot or

leg mostly. They are totally debilitating at the moment but they don't

last long. I never connected them with mito, or was too concerned about

them, because they always release rather quickly.

Ann Maire

It is interesting, I never saw anyone describe my head pain like you

did. It feels like someone has shoved a poker into my head from the

top down, right past the inside of my left eye down into my jaw. When

it hits, I feel my face get contorted with pain, I get out of breath

and I can't - don't want to- talk Have gotten it for years. But,

blessedly mine only lasts for a very short time. Most of the time it

comes at the end of a yawn, although it does also come spontaneously.

I always feel it is a muscle in my head cramping, and it always goes

away like a cramp would. Years ago I was diagnosed with TMJ - Tempo

Mandibular Joint problems. I really don't know how much the TMJ ever

contributed to my general neck pain, which is different than this head

thing, but I do feel TMJ is related to the one sided " cramps " I get

sometimes. When I get an attack I find someplace private immediately,

and try very hard to relax my face/head neck, let my jaw drop a little

bit, and sometimes massaging my neck near and around my on that side.

It usually does release quickly, and I can't remember one episode that

has lasted longer than 30 seconds. I say that with gratitude, because

it is an awful pain.

Regards

Sunny

Sorry to hear that you have some kind of stroke like events.

>

> I also get what I call " Brain Pain " . It is absolutely horrible pain

> that is sharp, stabbing and burning pain that travels from my left

> side of my head from the top to my eyes, down my whole side of my

> face, ear, and into my jaw. When I get this it comes and goes, it can

> last from a half hour to hours at a time. My last round of this lasted

> a total of 5 months. The docs said it was Neurological.

>

> Was it Athena Labs that ruled out the 2 more common forms of glycogen

> storage diseases? And do you know what tests Athena is doing on your

> biospy? Did you have the blood test to check to see if you have the 2

> gene mutations associated with MELAS? Alot of people don't like

> Athena Labs and won't send their muscle biopsy or blood work there to

> test for Mito disorders. They have messed up quite alot of results.

> Some people here have had bad luck with Athena Labs and I am sure if

> you asked they would tell their stories.

>

> Good Luck. I hope you get your results back sooner than another

> month. waiting is just so hard.

>

> Hugs,

> Ann-Marie

>

> klaga5 wrote:

>

> That's why I wonder if I may have mito (or MELAS). They always

> assumed I had a stroke in college, some 20 years ago. Again 2 1/2

> years ago they had to rule out stroke. With the new technology,

> they could tell I've never actually had a stroke. I've had

> absolutely terrible sharp pains in my head on and off as long as I

> can remember. I've even had my right hand, arm, and side of my face

> go numb for weeks. I have a couple calcifications on my MRI also.

>

> ----------

>

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.300 / Virus Database: 266.5.7 - Release Date: 3/1/2005

>

March 2, 2005

Sunny

I describe the pains as an ice pick, so we are on the same page describing

them. I don't have them very often anymore, since starting on Lamictal to

calm the nerves. My son has had these since he was a toddler (maybe before).

They do stop you in your tracks.

Cramping is very common in mito. The Lamictal and keeping my minerals in

balance certainly helps, but I rarely have a day without them. They first

started in my feet, especially while relaxing in the evening or driving.

They then also included my legs. Now I can get them anywhere, even what my

sister and I call butt cramps. The more stress (such as walking or pushing

myself) makes them worse. I can use my legs and get them in my arms - it is

not always a direct connection.

laurie

> From: z39z@...

> Reply-To:

> Date: Wed, 2 Mar 2005 08:13:50 -0500

> To:

> Subject: Re: muscle cramping & head pain

>

> I have a general and perhaps dumb question. Is muscle cramping a common

> experience with mito? I sometimes get very severe cramps - in foot or

> leg mostly. They are totally debilitating at the moment but they don't

> last long. I never connected them with mito, or was too concerned about

> them, because they always release rather quickly.

>

> Ann Maire

>

> It is interesting, I never saw anyone describe my head pain like you

> did. It feels like someone has shoved a poker into my head from the

> top down, right past the inside of my left eye down into my jaw. When

> it hits, I feel my face get contorted with pain, I get out of breath

> and I can't - don't want to- talk Have gotten it for years. But,

> blessedly mine only lasts for a very short time. Most of the time it

> comes at the end of a yawn, although it does also come spontaneously.

> I always feel it is a muscle in my head cramping, and it always goes

> away like a cramp would. Years ago I was diagnosed with TMJ - Tempo

> Mandibular Joint problems. I really don't know how much the TMJ ever

> contributed to my general neck pain, which is different than this head

> thing, but I do feel TMJ is related to the one sided " cramps " I get

> sometimes. When I get an attack I find someplace private immediately,

> and try very hard to relax my face/head neck, let my jaw drop a little

> bit, and sometimes massaging my neck near and around my on that side.

> It usually does release quickly, and I can't remember one episode that

> has lasted longer than 30 seconds. I say that with gratitude, because

> it is an awful pain.

>

> Regards

>

> Sunny

>

> Sorry to hear that you have some kind of stroke like events.

>>

>> I also get what I call " Brain Pain " . It is absolutely horrible pain

>> that is sharp, stabbing and burning pain that travels from my left

>> side of my head from the top to my eyes, down my whole side of my

>> face, ear, and into my jaw. When I get this it comes and goes, it can

>> last from a half hour to hours at a time. My last round of this lasted

>> a total of 5 months. The docs said it was Neurological.

>>

>> Was it Athena Labs that ruled out the 2 more common forms of glycogen

>> storage diseases? And do you know what tests Athena is doing on your

>> biospy? Did you have the blood test to check to see if you have the 2

>> gene mutations associated with MELAS? Alot of people don't like

>> Athena Labs and won't send their muscle biopsy or blood work there to

>> test for Mito disorders. They have messed up quite alot of results.

>> Some people here have had bad luck with Athena Labs and I am sure if

>> you asked they would tell their stories.

>>

>> Good Luck. I hope you get your results back sooner than another

>> month. waiting is just so hard.

>>

>> Hugs,

>> Ann-Marie

>>

>> klaga5 wrote:

>>

>> That's why I wonder if I may have mito (or MELAS). They always

>> assumed I had a stroke in college, some 20 years ago. Again 2 1/2

>> years ago they had to rule out stroke. With the new technology,

>> they could tell I've never actually had a stroke. I've had

>> absolutely terrible sharp pains in my head on and off as long as I

>> can remember. I've even had my right hand, arm, and side of my face

>> go numb for weeks. I have a couple calcifications on my MRI also.

>>

>> ----------

>>

>> No virus found in this outgoing message.

>> Checked by AVG Anti-Virus.

>> Version: 7.0.300 / Virus Database: 266.5.7 - Release Date: 3/1/2005

>>

March 2, 2005

Interesting, Laurie

Ice pick is another way of describing them.

While I have lived with cramps (and as they are strong and momentarily

totally debilitating, they really should have a stronger name! lol) I

never made THAT connection to mito. I have so may irregularities in my

body that I don't even mention to the docs anymore, just because I have

gotten used to them and adjusted to them as normal for me. And the

cramping does not happen often enough for me to say it is life altering

at this time. Thanks for mentioning the minerals: I will watch them

more closely. It is also good to know that Lamictal might help if they

do get worse.

Again, it is sooo good to be able to share like this. I hesitate to

mention these things to my husband and friends too often, simply

because they cannot understand completely, are doing what they can to

help, and why bring them down with worry. I do appreciate everyone's

sharing, you among the most generous Laurie.

Regards to all

Sunny

> Sunny

>

> I describe the pains as an ice pick, so we are on the same page

> describing

> them. I don't have them very often anymore, since starting on

> Lamictal to

> calm the nerves. My son has had these since he was a toddler (maybe

> before).

> They do stop you in your tracks.

>

> Cramping is very common in mito. The Lamictal and keeping my minerals

> in

> balance certainly helps, but I rarely have a day without them. They

> first

> started in my feet, especially while relaxing in the evening or

> driving.

> They then also included my legs. Now I can get them anywhere, even

> what my

> sister and I call butt cramps. The more stress (such as walking or

> pushing

> myself) makes them worse. I can use my legs and get them in my arms -

> it is

> not always a direct connection.

>

> laurie

>

> > From: z39z@...

> > Reply-To:

> > Date: Wed, 2 Mar 2005 08:13:50 -0500

> > To:

> > Subject: Re: muscle cramping & head pain

> >

> > I have a general and perhaps dumb question. Is muscle cramping a

> common

> > experience with mito? I sometimes get very severe cramps - in foot

> or

> > leg mostly. They are totally debilitating at the moment but they

> don't

> > last long. I never connected them with mito, or was too concerned

> about

> > them, because they always release rather quickly.

> >

> > Ann Maire

> >

> > It is interesting, I never saw anyone describe my head pain like you

> > did. It feels like someone has shoved a poker into my head from the

> > top down, right past the inside of my left eye down into my jaw.

> When

> > it hits, I feel my face get contorted with pain, I get out of breath

> > and I can't - don't want to- talk Have gotten it for years. But,

> > blessedly mine only lasts for a very short time. Most of the time

> it

> > comes at the end of a yawn, although it does also come

> spontaneously.

> > I always feel it is a muscle in my head cramping, and it always

> goes

> > away like a cramp would. Years ago I was diagnosed with TMJ - Tempo

> > Mandibular Joint problems. I really don't know how much the TMJ ever

> > contributed to my general neck pain, which is different than this

> head

> > thing, but I do feel TMJ is related to the one sided " cramps " I get

> > sometimes. When I get an attack I find someplace private

> immediately,

> > and try very hard to relax my face/head neck, let my jaw drop a

> little

> > bit, and sometimes massaging my neck near and around my on that

> side.

> > It usually does release quickly, and I can't remember one episode

> that

> > has lasted longer than 30 seconds. I say that with gratitude,

> because

> > it is an awful pain.

> >

> > Regards

> >

> > Sunny

> >

> > Sorry to hear that you have some kind of stroke like events.

> >>

> >> I also get what I call " Brain Pain " . It is absolutely horrible pain

> >> that is sharp, stabbing and burning pain that travels from my left

> >> side of my head from the top to my eyes, down my whole side of my

> >> face, ear, and into my jaw. When I get this it comes and goes, it

> can

> >> last from a half hour to hours at a time. My last round of this

> lasted

> >> a total of 5 months. The docs said it was Neurological.

> >>

> >> Was it Athena Labs that ruled out the 2 more common forms of

> glycogen

> >> storage diseases? And do you know what tests Athena is doing on

> your

> >> biospy? Did you have the blood test to check to see if you have

> the 2

> >> gene mutations associated with MELAS? Alot of people don't like

> >> Athena Labs and won't send their muscle biopsy or blood work there

> to

> >> test for Mito disorders. They have messed up quite alot of results.

> >> Some people here have had bad luck with Athena Labs and I am sure

> if

> >> you asked they would tell their stories.

> >>

> >> Good Luck. I hope you get your results back sooner than another

> >> month. waiting is just so hard.

> >>

> >> Hugs,

> >> Ann-Marie

> >>

> >> klaga5 wrote:

> >>

> >> That's why I wonder if I may have mito (or MELAS). They always

> >> assumed I had a stroke in college, some 20 years ago. Again 2 1/2

> >> years ago they had to rule out stroke. With the new technology,

> >> they could tell I've never actually had a stroke. I've had

> >> absolutely terrible sharp pains in my head on and off as long as I

> >> can remember. I've even had my right hand, arm, and side of my

> face

> >> go numb for weeks. I have a couple calcifications on my MRI also.

> >>

> >> ----------

> >>

> >> No virus found in this outgoing message.

> >> Checked by AVG Anti-Virus.

> >> Version: 7.0.300 / Virus Database: 266.5.7 - Release Date: 3/1/2005

> >>

March 2, 2005

Dolores

I hope that you contiue to improve now that you have the right

diagnosis. You have been through a lot! Good Bless You!

Sunny

>

> I have the muscle pains in my legs and feet, as you described. I

> really don't know what was going on with them until recently as I now

> starting to get the feeling back in them. I had something with my

> right foot and leg before, but couldn't narrow it down due to severe

> pheripheral neurothapy in both legs. After I was taken off all my

> parkinson's meds (due to a mis-diagnosis in 2001) the feeling is

> coming back in them and now I have the pains, but at least I know they

> are there. I also had purchased a Antodyne home thereary machine for

> the neuropathy, but the relief was only temporary until my current

> neurologist put me on

> Neurotin and it has also helped with the foot and leg pains. I also

> have the problem with the right side of my face and right eye. It

> sometimes feels like someone is stabbing me in my right wyw with a

> sharp needle. The worst experience was when the wind was blowing har

> the other day and I was outside waiting on the Topeka Transit Lift to

> pick me up for my opthamalogist appt as I have narrow angle glaucoma

> in my right eye, which does not raise the pressure in the eye and is

> not supposed to cause pain in the eye, I had to vitually take off my

> glasses cover my eye with my hand and go back inside my apt to wait)

> even though the Lift was across the street picking up a lady over

> there. The eye doctor said I have trigeminal neuralgia in the right

> side of my face and my right eye. The eye pains come and go, only

> lasting seconds but they might recur as many as maybe 200 or more

> times a day. He said the Neurotin I am taking for severe pheripheral

> neuropathy in both of my legs should also

> take care of the eye pain. I am

> so glad that the pain doesn't stay long. I also seem to have my my

> draw of something as I look terrible in pictures, it's like I am

> making a face at someone. This is a strange and new thing that has

> started, but " this to shall come to pass " . The Lord has been kind to

> me by allowing

> Dr. Baker to speak up and get me a different neurologist that cares

> about his patients, who agreed wholeheartedly with Dr. Baker that I

> definitely do not and never did have Parkinsons disease. I am so very

> relieved that I am off of all of the Parkinsons meds and I am able to

> function and feel so much better than when I was still taking

> medications that I did not need and were doing damage to my health.

> Dolores

>

> z39z@... wrote: