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Re: Intracranial Hypotension

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Hi Tommi,

I have never heard the term spontaneous intracranial pressure, but I am familiar

with intracranial pressure (as many of us on the list are.) My intracranial

pressure rises if I strain, talk to much, change positions too quickly, etc. In

my case, it makes me feel like my head is going to just blow a hole in the top

because the pounding of the fluid is very painful. Fortunately, these episodes

normally last at most a minute, and as little as a few seconds. I have had

times when they've lasted more than a day but those are few and far between

(although when I had the leaks they lasted much longer and relief time was few

and far between.)

Do you know what they mean by the " spontaneous " ? Sometimes I wonder if they

make up some terms as they go along. Ya have to wonder, but I'm sure if a

search was done someone could find this term and it will be a " real " medical

diagnosis.

Is she experiencing any head pounding (very different than the way your head

feels when it's pounding from a headache) or any spinal fluid head pains?

Kathy

Intracranial Hypotension

Hello Everyone,

I just have some questions, and I am as usual turning

to my pals here who know it all!!! :)

Well, I was told that the psuedomengicele is now

getting smaller, however they believe she has

spontaneous intracranial hypotension. Was wondering if

anyone else has this, or if anyone has heard of this.

I was wondering what else could be done!

Right now we are doing nothing!!

Well thanks as usual....

Tommi

(13), Chicago, IL.

__________________________________________________________

Cheap talk?

Check out Yahoo! Messenger's low PC-to-Phone call rates.

http://voice.yahoo.com

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here are some lings from googling spontaneous intracranial pressure

http://jnnp.bmj.com/cgi/content/full/74/6/752

http://cat.inist.fr/?aModele=afficheN & cpsidt=14871762

many more listed if anyone wants to try google or any other search engine

Rick

DK Moulton said the following on 12/14/2006 8:26 PM:

> Hi Tommi,

>

> I have never heard the term spontaneous intracranial pressure, but I am

familiar with intracranial pressure (as many of us on the list are.) My

intracranial pressure rises if I strain, talk to much, change positions too

quickly, etc. In my case, it makes me feel like my head is going to just blow a

hole in the top because the pounding of the fluid is very painful. Fortunately,

these episodes normally last at most a minute, and as little as a few seconds.

I have had times when they've lasted more than a day but those are few and far

between (although when I had the leaks they lasted much longer and relief time

was few and far between.)

>

> Do you know what they mean by the " spontaneous " ? Sometimes I wonder if they

make up some terms as they go along. Ya have to wonder, but I'm sure if a

search was done someone could find this term and it will be a " real " medical

diagnosis.

>

> Is she experiencing any head pounding (very different than the way your head

feels when it's pounding from a headache) or any spinal fluid head pains?

>

> Kathy

> Intracranial Hypotension

>

>

> Hello Everyone,

>

> I just have some questions, and I am as usual turning

> to my pals here who know it all!!! :)

>

> Well, I was told that the psuedomengicele is now

> getting smaller, however they believe she has

> spontaneous intracranial hypotension. Was wondering if

> anyone else has this, or if anyone has heard of this.

> I was wondering what else could be done!

> Right now we are doing nothing!!

>

> Well thanks as usual....

> Tommi

> (13), Chicago, IL.

>

> __________________________________________________________

> Cheap talk?

> Check out Yahoo! Messenger's low PC-to-Phone call rates.

> http://voice.yahoo.com

>

>

>

>

>

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Kathy,

Thanks for the reply,

She is experincing headaches when she is up, they get

severe, but she does get some relief when she lies

down. She, is absolutely miserable, and can not even

go to school, or any other functions. I am not sure

what to do, they spontaneous is that it comes and

goes. If you google it mostly it is related to a

spinal fluid leak. However, they seem not to be real

worried, and passive about it. Well I guess that is

easy, it is not their kid! Well, for now I have

e-mailed the NSG many times, and have heard nothing

back. So, we are debating if a trip to the er is where

we need to be, that way we are then in their faces,

and they have to deal with her! Gosh, thanks for

listening, sorry I rambled....

Tommi

--- DK Moulton wrote:

> Hi Tommi,

>

> I have never heard the term spontaneous intracranial

> pressure, but I am familiar with intracranial

> pressure (as many of us on the list are.) My

> intracranial pressure rises if I strain, talk to

> much, change positions too quickly, etc. In my

> case, it makes me feel like my head is going to just

> blow a hole in the top because the pounding of the

> fluid is very painful. Fortunately, these episodes

> normally last at most a minute, and as little as a

> few seconds. I have had times when they've lasted

> more than a day but those are few and far between

> (although when I had the leaks they lasted much

> longer and relief time was few and far between.)

>

> Do you know what they mean by the " spontaneous " ?

> Sometimes I wonder if they make up some terms as

> they go along. Ya have to wonder, but I'm sure if a

> search was done someone could find this term and it

> will be a " real " medical diagnosis.

>

> Is she experiencing any head pounding (very

> different than the way your head feels when it's

> pounding from a headache) or any spinal fluid head

> pains?

>

> Kathy

> Intracranial Hypotension

>

>

> Hello Everyone,

>

> I just have some questions, and I am as usual

> turning

> to my pals here who know it all!!! :)

>

> Well, I was told that the psuedomengicele is now

> getting smaller, however they believe she has

> spontaneous intracranial hypotension. Was

> wondering if

> anyone else has this, or if anyone has heard of

> this.

> I was wondering what else could be done!

> Right now we are doing nothing!!

>

> Well thanks as usual....

> Tommi

> (13), Chicago, IL.

>

>

>

__________________________________________________________

> Cheap talk?

> Check out Yahoo! Messenger's low PC-to-Phone call

> rates.

> http://voice.yahoo.com

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

Tommi

's Mom

Chicago, IL. USA

__________________________________________________

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How often do you guys experience this? I get really bad pounding in

my head sometimes when I stand, etc., and I can fall over because of

it. When this happens, I can't speak for at least a few seconds (I'm

not sure how long it is usually). I'm just wondering if I might have

the same thing--no one could ever diagnose my problem. Maybe if I

know what to ask about, it will help.

Thanks!

Lana P.

>

> Hi Tommi,

>

> I have never heard the term spontaneous intracranial pressure, but

I am familiar with intracranial pressure (as many of us on the list

are.) My intracranial pressure rises if I strain, talk to much,

change positions too quickly, etc. In my case, it makes me feel

like my head is going to just blow a hole in the top because the

pounding of the fluid is very painful. Fortunately, these episodes

normally last at most a minute, and as little as a few seconds. I

have had times when they've lasted more than a day but those are few

and far between (although when I had the leaks they lasted much

longer and relief time was few and far between.)

>

> Do you know what they mean by the " spontaneous " ? Sometimes I

wonder if they make up some terms as they go along. Ya have to

wonder, but I'm sure if a search was done someone could find this

term and it will be a " real " medical diagnosis.

>

> Is she experiencing any head pounding (very different than the way

your head feels when it's pounding from a headache) or any spinal

fluid head pains?

>

> Kathy

> Intracranial Hypotension

>

>

> Hello Everyone,

>

> I just have some questions, and I am as usual turning

> to my pals here who know it all!!! :)

>

> Well, I was told that the psuedomengicele is now

> getting smaller, however they believe she has

> spontaneous intracranial hypotension. Was wondering if

> anyone else has this, or if anyone has heard of this.

> I was wondering what else could be done!

> Right now we are doing nothing!!

>

> Well thanks as usual....

> Tommi

> (13), Chicago, IL.

>

> __________________________________________________________

> Cheap talk?

> Check out Yahoo! Messenger's low PC-to-Phone call rates.

> http://voice.yahoo.com

>

>

>

>

>

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Share on other sites

Hi Lana

My pains come with position changes (if the weather is stormy or cloudy the pain

can be more intense). I also get it with straining, talking/laughing too much

and laying flat will bring the pain on at times.

I can always talk during these episodes, I probably would prefer not to as the

pain is intense, but I can definitely speak. Before my last untethering, these

pains, instead of lasting 10-60 seconds, they were lasting entire days.

Kathy

Intracranial Hypotension

>

>

> Hello Everyone,

>

> I just have some questions, and I am as usual turning

> to my pals here who know it all!!! :)

>

> Well, I was told that the psuedomengicele is now

> getting smaller, however they believe she has

> spontaneous intracranial hypotension. Was wondering if

> anyone else has this, or if anyone has heard of this.

> I was wondering what else could be done!

> Right now we are doing nothing!!

>

> Well thanks as usual....

> Tommi

> (13), Chicago, IL.

>

> __________________________________________________________

> Cheap talk?

> Check out Yahoo! Messenger's low PC-to-Phone call rates.

> http://voice.yahoo.com

>

>

>

>

>

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Share on other sites

Lana,

's headaches are persistent. They are worse when

she sits up, and there is no relief until she lies

down again. Her headache is there even when she is

lying down.

Thanks,

Tommi

--- twolovebirds_3

wrote:

> How often do you guys experience this? I get really

> bad pounding in

> my head sometimes when I stand, etc., and I can fall

> over because of

> it. When this happens, I can't speak for at least a

> few seconds (I'm

> not sure how long it is usually). I'm just wondering

> if I might have

> the same thing--no one could ever diagnose my

> problem. Maybe if I

> know what to ask about, it will help.

>

> Thanks!

> Lana P.

>

>

> >

> > Hi Tommi,

> >

> > I have never heard the term spontaneous

> intracranial pressure, but

> I am familiar with intracranial pressure (as many of

> us on the list

> are.) My intracranial pressure rises if I strain,

> talk to much,

> change positions too quickly, etc. In my case, it

> makes me feel

> like my head is going to just blow a hole in the top

> because the

> pounding of the fluid is very painful. Fortunately,

> these episodes

> normally last at most a minute, and as little as a

> few seconds. I

> have had times when they've lasted more than a day

> but those are few

> and far between (although when I had the leaks they

> lasted much

> longer and relief time was few and far between.)

> >

> > Do you know what they mean by the " spontaneous " ?

> Sometimes I

> wonder if they make up some terms as they go along.

> Ya have to

> wonder, but I'm sure if a search was done someone

> could find this

> term and it will be a " real " medical diagnosis.

> >

> > Is she experiencing any head pounding (very

> different than the way

> your head feels when it's pounding from a headache)

> or any spinal

> fluid head pains?

> >

> > Kathy

> > Intracranial Hypotension

> >

> >

> > Hello Everyone,

> >

> > I just have some questions, and I am as usual

> turning

> > to my pals here who know it all!!! :)

> >

> > Well, I was told that the psuedomengicele is now

> > getting smaller, however they believe she has

> > spontaneous intracranial hypotension. Was

> wondering if

> > anyone else has this, or if anyone has heard of

> this.

> > I was wondering what else could be done!

> > Right now we are doing nothing!!

> >

> > Well thanks as usual....

> > Tommi

> > (13), Chicago, IL.

> >

> >

>

__________________________________________________________

> > Cheap talk?

> > Check out Yahoo! Messenger's low PC-to-Phone

> call rates.

> > http://voice.yahoo.com

> >

> >

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

Tommi

's Mom

Chicago, IL. USA

__________________________________________________

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  • 4 weeks later...

Just from what I have seen and felt from it myself.........I'm thinking that

this might be what a Spinal Headache causes when a Spinal Headache is

caused by a CSF Leak. Then it is relieved once you lay down.

Me :)

Nebraska, USA

mymocha@...

however they believe she has

spontaneous intracranial hypotension. Was wondering if

anyone else has this, or if anyone has heard of this.

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