Re: For women only about hormones, but perhaps men do have hormonal problems too and they do not know it!!

June 10, 2012

I have hormonal problems since I was 16 years all. I have my period at 12,

then it never came back again, I went to a doctor when I was 16 because it

never came. I also have epileptic sizures and amazingly I have them in

specific dates: August 17, December 17th, February 17th, and April 17th of

1979 and 1980, one every four months!!! I did not know they apperared on

specific dates until my mother died and I found out a diary in which she

kept record of all of them!!! So this means it was not pshycological as it

was suggested back then, I guess that was the reason my mother never show

the diary to me. Then at 16 after many studies were done becuase of the

sizures, an endocrinologyst studied all my hormones and I did had a HGH

problem as I was not producing it, so I was not growing at all neither

developing correctly. He put me on injections with Growth Hormone and the

epilpetic sizures stop, my period came back, and I started growing again.

Then when I was 33 years old I started with milk in my breasts with out

being pregnant, so I started with a high level of prolactine, the hormone

the pituitary gland produces when your are breast feeding, so they decided I

have a little tumor in my pituitary gland, eventhough it was never seen in

all the MRIs I had. But the doctors treat me as if I had it. The medicine

they gave me disminished the ICP, it is one of the secondary effects, but

the doctors did not know it. So I lived happy for 10 years, thinking I had

the tumor which was corrected by the medicine, but the real issue was the

ICP was lowered down, I know that now and I have read, Dostinex, the

medicne, lowers the ICP. Then after 10 years of taking thise medicine, all

the symptoms started to increase a lot, the neurolocial ones and the

endocriinal ones two, so finally I knew I had TCS, SM and Chiari, but this

final diagnose was not made until I was 45 years old!!! Then during the last

five years I have 5 surgeries, one for the TCS, two for Chiiari, and two for

a stupid valve that is not working on. The issue here is that my ICP has not

lower eventhough I have all those surgeries, but I have noticed that when I

can lower down the ICP I do not have breast milk, and I do not need the

thyroid hormone either!!! As I have ICP now I need both medicines one for

the prolactin another for the hypothyroidism, but with the years the drug

for lowering down the prolactine leveles, (Dostinex) increase my chronic

fatigue a lot, so now I prefer the breast milk which is not so much than the

secondary reactions of the Dostinex which is being sleep all day long.

This is my hormone story, I must be a very strange case as I have three

hormones working bad!!! But what I am sure is that Chiari affects the

pituitary gland as Dr. B. explains in that video by the CSF pressuring it

instead of ciculating properly. My neurologyst, also say that I have a

hypothalamus problem as well because I lived so many years with the TCS it

pulled down my brain so much that the hypothalamus was pulled into a bone of

the nose near it, so it is pressured therefore it is not working well, so he

thinks the throid problem is more because of the hypothalamus than for the

pituitary gland which is pressure by the CSF.

In any case, the worst part for me is that what ever I do, I am fat, I

lowered a lot of pounds when I lowered the ICP in those first 10 years with

Dostinex, but now nothing serves, if I do diet, or excercise I am still

fat!!! The worst part are my sisters which think I am fat, not obese, but

fat enough because I ate a lot, and the more I explain to them the problem

the more they think that I am telling lies!!! I really hate this, because

living in a diet that does not work is very frustrating. In action to this

you can not do any excercise at all as when you have ICP it is increased by

exercise. It took me many years to understand this, the more you do

excersise the more your heart beats, the more CSF our brain produces, and

what happens if it does not circulate and stays in your brain? ICP

increases!!! So the more I did excersice the more y nose leaked, and my ears

too!! So I can not make excersice either, and I have two stupid sisters

thinking I am fat because I eat a lot!! So this is one of the reasons I

prefer not to see them any more. I hate they do not understand this

terrible, terrible sickness, it is painful they judge me with out

understanding the complixities fo this disease!!! The only way I can lose

weight is when the ICP is down, which is more difficult while the years

pass, there most be a natural increase of the ICP with age and then with

Chiari it is worst!!! This natural increase will explain a lot of dementias

which appeared later in life, but they have not studied it well.

Mexico

De: Cortney

Responder a: < >

Fecha: domingo 10 de junio de 2012 08:46

Para: " "

< >

Asunto: Re: Growth Hormone - and other

hormonal links to chiari

I would be very interested to hear more about hormonal issues from other

Chiari women! I've been undergoing quite a lot of testing the past couple

weeks because my hormones have drastically changed for the worse since my

decompression. Cycles are light and FAR between. The longest being a year

after surgery and then 6-10 months....It has also made me gain 55 lbs in two

years. I'm getting desperate for some answers but no one really knows what

it is or what to do. Any experience would be greatly appreciated!

Cortney

June 10, 2012

,

You may have catamenial seizures. My daughter has this. It is related to

hormones. Ask about trileptal for seizure control.

Best to you.

Sharon Lang

> I have hormonal problems since I was 16 years all. I have my period at 12,

> then it never came back again, I went to a doctor when I was 16 because it

> never came. I also have epileptic sizures and amazingly I have them in

> specific dates: August 17, December 17th, February 17th, and April 17th of

> 1979 and 1980, one every four months!!! I did not know they apperared on

> specific dates until my mother died and I found out a diary in which she

> kept record of all of them!!! So this means it was not pshycological as it

> was suggested back then, I guess that was the reason my mother never show

> the diary to me. Then at 16 after many studies were done becuase of the

> sizures, an endocrinologyst studied all my hormones and I did had a HGH

> problem as I was not producing it, so I was not growing at all neither

> developing correctly. He put me on injections with Growth Hormone and the

> epilpetic sizures stop, my period came back, and I started growing again.

>

> Then when I was 33 years old I started with milk in my breasts with out

> being pregnant, so I started with a high level of prolactine, the hormone

> the pituitary gland produces when your are breast feeding, so they decided I

> have a little tumor in my pituitary gland, eventhough it was never seen in

> all the MRIs I had. But the doctors treat me as if I had it. The medicine

> they gave me disminished the ICP, it is one of the secondary effects, but

> the doctors did not know it. So I lived happy for 10 years, thinking I had

> the tumor which was corrected by the medicine, but the real issue was the

> ICP was lowered down, I know that now and I have read, Dostinex, the

> medicne, lowers the ICP. Then after 10 years of taking thise medicine, all

> the symptoms started to increase a lot, the neurolocial ones and the

> endocriinal ones two, so finally I knew I had TCS, SM and Chiari, but this

> final diagnose was not made until I was 45 years old!!! Then during the last

> five years I have 5 surgeries, one for the TCS, two for Chiiari, and two for

> a stupid valve that is not working on. The issue here is that my ICP has not

> lower eventhough I have all those surgeries, but I have noticed that when I

> can lower down the ICP I do not have breast milk, and I do not need the

> thyroid hormone either!!! As I have ICP now I need both medicines one for

> the prolactin another for the hypothyroidism, but with the years the drug

> for lowering down the prolactine leveles, (Dostinex) increase my chronic

> fatigue a lot, so now I prefer the breast milk which is not so much than the

> secondary reactions of the Dostinex which is being sleep all day long.

>

> This is my hormone story, I must be a very strange case as I have three

> hormones working bad!!! But what I am sure is that Chiari affects the

> pituitary gland as Dr. B. explains in that video by the CSF pressuring it

> instead of ciculating properly. My neurologyst, also say that I have a

> hypothalamus problem as well because I lived so many years with the TCS it

> pulled down my brain so much that the hypothalamus was pulled into a bone of

> the nose near it, so it is pressured therefore it is not working well, so he

> thinks the throid problem is more because of the hypothalamus than for the

> pituitary gland which is pressure by the CSF.

>

> In any case, the worst part for me is that what ever I do, I am fat, I

> lowered a lot of pounds when I lowered the ICP in those first 10 years with

> Dostinex, but now nothing serves, if I do diet, or excercise I am still

> fat!!! The worst part are my sisters which think I am fat, not obese, but

> fat enough because I ate a lot, and the more I explain to them the problem

> the more they think that I am telling lies!!! I really hate this, because

> living in a diet that does not work is very frustrating. In action to this

> you can not do any excercise at all as when you have ICP it is increased by

> exercise. It took me many years to understand this, the more you do

> excersise the more your heart beats, the more CSF our brain produces, and

> what happens if it does not circulate and stays in your brain? ICP

> increases!!! So the more I did excersice the more y nose leaked, and my ears

> too!! So I can not make excersice either, and I have two stupid sisters

> thinking I am fat because I eat a lot!! So this is one of the reasons I

> prefer not to see them any more. I hate they do not understand this

> terrible, terrible sickness, it is painful they judge me with out

> understanding the complixities fo this disease!!! The only way I can lose

> weight is when the ICP is down, which is more difficult while the years

> pass, there most be a natural increase of the ICP with age and then with

> Chiari it is worst!!! This natural increase will explain a lot of dementias

> which appeared later in life, but they have not studied it well.

>

> Mexico

>

> De: Cortney

> Responder a: < >

> Fecha: domingo 10 de junio de 2012 08:46

> Para: " "

> < >

> Asunto: Re: Growth Hormone - and other

> hormonal links to chiari

>

> I would be very interested to hear more about hormonal issues from other

> Chiari women! I've been undergoing quite a lot of testing the past couple

> weeks because my hormones have drastically changed for the worse since my

> decompression. Cycles are light and FAR between. The longest being a year

> after surgery and then 6-10 months....It has also made me gain 55 lbs in two

> years. I'm getting desperate for some answers but no one really knows what

> it is or what to do. Any experience would be greatly appreciated!

> Cortney

>

June 15, 2012

I do not have the sizures anymore I have them when I was a teen ager, but

thank you for the information I did not know this kind of sisures have a

name.

De: Gordon Lang

Responder a: < >

Fecha: domingo 10 de junio de 2012 12:53

Para: " "

< >, " lfergus@... "

Asunto: Re: For women only about hormones,

but perhaps men do have hormonal problems too and they do not know it!!

,

You may have catamenial seizures. My daughter has this. It is related to

hormones. Ask about trileptal for seizure control.

Best to you.

Sharon Lang

On Jun 10, 2012, at 12:34 PM, Frade Rubio <lfrade@...

<mailto:lfrade%40prodigy.net.mx> > wrote: