Re: Re: Caffeine vs CSF: Are you sure?

[Guest guest]

My daughter is 5 now, but we were told this option early on with her Chiari

headached to try to prevent over using tylenol and motrin.  We have some Chiari

adult friends that have to take massive amounts of narcatics to take the edge

off their Chiari headaches and we did not want this for Cai.  She has received

IV drips before also and goes right to sleep.  We were told about a product

called SPARK. It is an energy powder we mix with Sprite for taste and it has

been very helpful.  We gave the information to some of Chiari adult friends and

they say it has helped their headaches also.  The positive about SPARK is it

contains many of your daily vitamins.  Our daughter's doctor says he recommends

it for ADHD and ADD kids also instead of medication. 

 

 

________________________________

To: Shauncey ;

Sent: Sunday, November 13, 2011 3:07 PM

Subject: Re: Re: Caffeine vs CSF: Are you sure?

 

Ok! From what I remember the Caffeine restricts the smaller blood vessels that

cause most of the sever pain!

I know to this day, I still consume enough caffeine to kill a small child but

with my situation it helps with the pain!

Just thought I would try to help!

Bea

VP shunt 04

Decompressed 04

Detrethered. 07

Fused. 07

Piggy- back fuse 11

EDS

And Mom of a Pt of Chiari

Sent from my Verizon Wireless BlackBerry

Re: Caffeine vs CSF: Are you sure?

I have seen this discussion a lot lately. I feel I will put my thoughts in also.

Since April 2007 I have been hospitalized off and on with sever headaches that

can not be controlled with pain meds. My NS at the time is a chiari specialist

and he put me on a caffine iv drip. He advised me that the amount of caffine may

make me very wired and awake but could help with the headache. Within 30min I

was sound asleep and finally had some relief. Fast forward 2 years I was

diagnosed with several small holes in my dura causing a chronic spinal leak.

Again they treated me with caffine iv drip and it was the only relief I got.

However once discharged they knew I would not be able to continue iv caffine. So

I was advised to increase my caffine daily and when my headaches become

unbareable to try something such as no dose(200 mg) of caffine to help relieve

the headache. To this day it is one of the few things that help with my

headaches. I have not found a NS that

will help with the chronic leak. I also suffer from blockage of CSF. I do not

intend to say this helps every one but it does help me. Like so many things for

us with chiari what works for some does not work for others. I hope this info

will help others.

Shauncey

Decompresion 01/07

Revised 03/07 and 07/07

Bacterial meningitas 02/07

EDS

Sent from my Verizon Wireless Phone

[Guest guest]

On the other hand, if you CFS pressure is too high, would caffeine be more

troublesome? I get confused by whether I am too high or too low. Being up causes

my pressure to build but lying down gives relief so I assume that is high

pressure. In that case should caffeine be avoided?

[Guest guest]

I have been drinking coffee since I was 6mo old (grandpa put it in my bottle...

mostly milk).

I figured out my freshman year at Baylor, long before I was finally correctly

diagnosed with Chiari that the fastest way to not pull an all-nighter was to

drink coffee... 1/2 pot and I was passed out and slept through whatever

class/test I was supposed to be studying for.

I have had so many doctors over the years tell me to cut out caffeine only for

me to laugh at them!

Not much else works better than an OTC headache med, a high caffeinated soda

(Big Red is highest on the market) and chocolate.

Aimee

Plano, Texas

--

Sent from my Android phone with K-9 Mail. Please excuse my brevity.

Klaehn wrote:

My daughter is 5 now, but we were told this option early on with her Chiari

headached to try to prevent over using tylenol and motrin. We have some Chiari

adult friends that have to take massive amounts of narcatics to take the edge

off their Chiari headaches and we did not want this for Cai. She has received

IV drips before also and goes right to sleep. We were told about a product

called SPARK. It is an energy powder we mix with Sprite for taste and it has

been very helpful. We gave the information to some of Chiari adult friends and

they say it has helped their headaches also. The positive about SPARK is it

contains many of your daily vitamins. Our daughter's doctor says he recommends

it for ADHD and ADD kids also instead of medication.

________________________________

To: Shauncey ;

Sent: Sunday, November 13, 2011 3:07 PM

Subject: Re: Re: Caffeine vs CSF: Are you sure?

Ok! From what I remember the Caffeine restricts the smaller blood vessels that

cause most of the sever pain!

I know to this day, I still consume enough caffeine to kill a small child but

with my situation it helps with the pain!

Just thought I would try to help!

Bea

VP shunt 04

Decompressed 04

Detrethered. 07

Fused. 07

Piggy- back fuse 11

EDS

And Mom of a Pt of Chiari

Sent from my Verizon Wireless BlackBerry

Re: Caffeine vs CSF: Are you sure?

I have seen this discussion a lot lately. I feel I will put my thoughts in also.

Since April 2007 I have been hospitalized off and on with sever headaches that

can not be controlled with pain meds. My NS at the time is a chiari specialist

and he put me on a caffine iv drip. He advised me that the amount of caffine may

make me very wired and awake but could help with the headache. Within 30min I

was sound asleep and finally had some relief. Fast forward 2 years I was

diagnosed with several small holes in my dura causing a chronic spinal leak.

Again they treated me with caffine iv drip and it was the only relief I got.

However once discharged they knew I would not be able to continue iv caffine. So

I was advised to increase my caffine daily and when my headaches become

unbareable to try something such as no dose(200 mg) of caffine to help relieve

the headache. To this day it is one of the few things that help with my

headaches. I have not found a NS that

will help with the chronic leak. I also suffer from blockage of CSF. I do not

intend to say this helps every one but it does help me. Like so many things for

us with chiari what works for some does not work for others. I hope this info

will help others.

Shauncey

Decompresion 01/07

Revised 03/07 and 07/07

Bacterial meningitas 02/07

EDS

Sent from my Verizon Wireless Phone

[Guest guest]

Response:

Think of your body as a bottle half full of water. When it is upright your

intracranial pressure will be lower. When we lay down, csf tries to get into

areas around the brain that can be blocked, causing higher pressure.

Drinking caffeine isn't always a good thing.

Things to help if your pain is bad while laying down:

Prop the head of your bed up. You can even put blocks under the feet of the

head of the bead.

When I was really bad, I used to sleep in a recliner, almost sitting

upright.

I also used bags of frozen peas at the base of my skull. I'd refreeze them

and one back would last about 5 days.

When my pressure has been low I drink caffeine, plus lots of water. Caffeine

is a diuretic, it helps the body to get rid of excess csf.

Sometimes it is very difficult to determine what type headache you have.

Write in a journal so you can compare notes. Put down where the headache is

at, like the top of your head, or the base of your skull, or all over.

Sharing this information with your surgeon or neurologist will help them to

help you.

Kathleen

On the other hand, if you CFS pressure is too high, would caffeine be more

troublesome? I get confused by whether I am too high or too low. Being up

causes my pressure to build but lying down gives relief so I assume that is

high pressure. In that case should caffeine be avoided?

[Guest guest]

A symptom of high intracranial hypertension is falling sleep, so if you

drink coffee and then sleep then it seems it is causing this too, is n¹t it?

Date: Tue, 15 Nov 2011 07:57:15 -0700

To: " "

< >

Subject: Re: Caffeine vs CSF: Are you sure?

Wow . . . I've been told by anesthesiologist that caffeine helps leaks and

to use it (back in 2001) as well as lying down when I was frustrated and

didn't want a blood patch( long story) but this is the first time I've read

where people do the same thing I do and fall asleep sometimes after drinking

a cup of coffee or caffeinated drink.

I don't feel so weird now! Not that it fixes all my issues but drinking

coffee or sipping coke when I have a severe headache helps. Coke (the

drink) helps with pain and nausea if I sip it soon enough when I know the

pain is increasing.

Just my 2 cents, as always check with your own physician:)

Take care everyone,

Holmes

[Guest guest]

I have no idea. Sorry, my brain is taking the day off today so thinking is a

challenge:)

On Nov 15, 2011, at 8:10 AM, Frade Rubio

wrote:

> A symptom of high intracranial hypertension is falling sleep, so if you drink

coffee and then sleep then it seems it is causing this too, is n’t it?

>

>

>

> Date: Tue, 15 Nov 2011 07:57:15 -0700

> To: " "

< >

> Subject: Re: Caffeine vs CSF: Are you sure?

>

>

>

>

>

>

> Wow . . . I've been told by anesthesiologist that caffeine helps leaks and to

use it (back in 2001) as well as lying down when I was frustrated and didn't

want a blood patch( long story) but this is the first time I've read where

people do the same thing I do and fall asleep sometimes after drinking a cup of

coffee or caffeinated drink.

>

> I don't feel so weird now! Not that it fixes all my issues but drinking

coffee or sipping coke when I have a severe headache helps. Coke (the drink)

helps with pain and nausea if I sip it soon enough when I know the pain is

increasing.

>

> Just my 2 cents, as always check with your own physician:)

>

> Take care everyone,

> Holmes

>

>

>

>

[Guest guest]

The point being that hypertension is referring to blood pressures, not spinal

fluid pressures.  Two unrelated things.  You can have high intracranial BPs

(which make you susceptible to aneurysms) and have perfectly fine ICPs.  The

opposite is the same.  However, a lot of us undecompressed Chiarians have high

ICPs.  That will cause headaches and make you sleepy (not necessarily make you

sleep). 

Just trying to help with language and understanding, that's all!  =)

Subject: Re: Re: Caffeine vs CSF: Are you sure?

To: " Holmes " ,

" "

< >

Date: Tuesday, November 15, 2011, 10:10 AM

      A symptom of high intracranial hypertension is falling sleep, so if

you

drink coffee and then sleep then it seems it is causing this too, is n¹t it?

From: Holmes <shelleyholmes08@...

</mc/compose?to=shelleyholmes08%40yahoo.com> >

Date: Tue, 15 Nov 2011 07:57:15 -0700

To: "

</mc/compose?to=%40yahoogroups.com> "

<

</mc/compose?to=%40yahoogroups.com> >

Subject: Re: Caffeine vs CSF: Are you sure?

Wow . . . I've been told by anesthesiologist that caffeine helps leaks and

to use it (back in 2001) as well as lying down when I was frustrated and

didn't want a blood patch( long story) but this is the first time I've read

where people do the same thing I do and fall asleep sometimes after drinking

a cup of coffee or caffeinated drink.

I don't feel so weird now!  Not that it fixes all my issues but drinking

coffee or sipping coke when I have a severe headache helps.  Coke (the

drink) helps with pain and nausea if I sip it soon enough when I know the

pain is increasing.

Just my 2 cents, as always check with your own physician:)

Take care everyone,

Holmes

 

 

[Guest guest]

What I was saying is that you use the same word Hypertension for the CSF or

for the blood, this is, you can have HIGH intracranial pressure or Blood

Hypertension, the word is the same even though they are two different

concepts. However, I do not think these two are as unrelated as you think.

While many doctors think they are unrelated many others think each one of

them can alter each other due to Monro Kellie Hypothesis (the cranium and

its constituents -blood, CSF, and brain tissue- create a state of volume

equilibrium, such that any increase in volume of one of the cranial

constituents must be compensated by a decrease in volume of another

<http://en.wikipedia.org/wiki/Intracranial_pressure#cite_note-Mokri-4> I

copied it so it is properly translated in English. In the case of Chiari

when you have chronic High ICP one of the main signs of this alteration is

seen in your brain veins flow as they are pressured by CSF, then blood

pressure is affected too. You have to see my MRV (veins MRI) to see the

difference with a normal one.

Date: Tue, 15 Nov 2011 13:57:43 -0800 (PST)

To: Frade Rubio

Cc: <Chiariconnectioninternational >

Subject: Re: Re: Caffeine vs CSF: Are you

sure?

The point being that hypertension is referring to blood pressures, not

spinal fluid pressures. Two unrelated things. You can have high

intracranial BPs (which make you susceptible to aneurysms) and have

perfectly fine ICPs. The opposite is the same. However, a lot of us

undecompressed Chiarians have high ICPs. That will cause headaches and make

you sleepy (not necessarily make you sleep).

Just trying to help with language and understanding, that's all! =)

>>

>>

>> Subject: Re: Re: Caffeine vs CSF: Are you

>> sure?

>> To: " Holmes " ,

>> " "

>> < >

>> Date: Tuesday, November 15, 2011, 10:10 AM

>>

>> A symptom of high intracranial hypertension is falling sleep, so if you

>> drink coffee and then sleep then it seems it is causing this too, is n©öt it?

>>

>>

>> From: Holmes <shelleyholmes08@...

>> </mc/compose?to=shelleyholmes08%40yahoo.com> >

>> Date: Tue, 15 Nov 2011 07:57:15 -0700

>> To: "

>> </mc/compose?to=%40yahoogroups.com> "

>> <

>> </mc/compose?to=%40yahoogroups.com> >

>> Subject: Re: Caffeine vs CSF: Are you sure?

>>

>> Wow . . . I've been told by anesthesiologist that caffeine helps leaks and

>> to use it (back in 2001) as well as lying down when I was frustrated and

>> didn't want a blood patch( long story) but this is the first time I've read

>> where people do the same thing I do and fall asleep sometimes after drinking

>> a cup of coffee or caffeinated drink.

>>

>> I don't feel so weird now! Not that it fixes all my issues but drinking

>> coffee or sipping coke when I have a severe headache helps. Coke (the

>> drink) helps with pain and nausea if I sip it soon enough when I know the

>> pain is increasing.

>>

>> Just my 2 cents, as always check with your own physician:)

>>

>> Take care everyone,

>> Holmes

>>

>>

>>

>>

[Guest guest]

Hypertension by itself refers to blood pressures.  I've only heard it referred

to as " High ICP " or " Increased ICP " .  I used to work in a neuro head trauma

unit at a local hospital as an RN.  Now, there might be some translational

things or some docs may use other terms but I have not heard them, hence why I

said what I did. 

Yes, I do have alterations with my veins (I've had MRAs and MRVs as well).  I'm

familiar with the closed space hypothesis, but the blood vessels in the brain

are very small, relatively.  So, if they expand, they're not going to take up

much space and therefore increase ICP much at all.  It can but I don't think it

would by much. 

Subject: Re: Re: Caffeine vs CSF: Are you sure?

To: " Holmes " ,

" "

< >

Date: Tuesday, November 15, 2011, 10:10 AM

      A symptom of high intracranial hypertension is falling sleep, so if

you

drink coffee and then sleep then it seems it is causing this too, is n¹t it?

From: Holmes <shelleyholmes08@...

</mc/compose?to=shelleyholmes08%40yahoo.com> >

Date: Tue, 15 Nov 2011 07:57:15 -0700

To: "

</mc/compose?to=%40yahoogroups.com> "

<

</mc/compose?to=%40yahoogroups.com> >

Subject: Re: Caffeine vs CSF: Are you sure?

Wow . . . I've been told by anesthesiologist that caffeine helps leaks and

to use it (back in 2001) as well as lying down when I was frustrated and

didn't want a blood patch( long story) but this is the first time I've read

where people do the same thing I do and fall asleep sometimes after drinking

a cup of coffee or caffeinated drink.

I don't feel so weird now!  Not that it fixes all my issues but drinking

coffee or sipping coke when I have a severe headache helps.  Coke (the

drink) helps with pain and nausea if I sip it soon enough when I know the

pain is increasing.

Just my 2 cents, as always check with your own physician:)

Take care everyone,

Holmes

 

 

[Guest guest]

It must be related to a language issue, remember I am from Mexico and live

in Mexico, in Spanish Hypertension is not just related to the blood

pressure, you have to specify which kind of hypertension: blood or CSF. One

thing I have some times is that my right eye gets full of veins and it is

red completely, I have learned that this happens after I have a bath or

after I try to pick up something from the floor, it also happens when I am a

little dehydrated, then my right eye is red. In my MRV my right side veins

are not normal, and in the past I did have broken vessles in my eye!! As in

my case everything is related to CSF ( I have Chiari 0 a Syrinx and TCS)

then something must be happening. Sometimes I have my blood pressure very

very low, particularly when I had leaks, I had never had blood hypertension

but I have a long history with CSF leaks.

Date: Tue, 15 Nov 2011 17:31:38 -0800 (PST)

To: Frade Rubio

Cc: <Chiariconnectioninternational >

Subject: Re: Re: Caffeine vs CSF: Are you

sure?

Hypertension by itself refers to blood pressures.? I've only heard it

referred to as " High ICP " or " Increased ICP " .? I used to work in a neuro

head trauma unit at a local hospital as an RN.? Now, there might be some

translational things or some docs may use other terms but I have not heard

them, hence why I said what I did.?

Yes, I do have alterations with my veins (I've had MRAs and MRVs as well).?

I'm familiar with the closed space hypothesis, but the blood vessels in the

brain are very small, relatively.? So, if they expand, they're not going to

take up much space and therefore increase ICP much at all.? It can but I

don't think it would by much.?

From: Frade Rubio <lfrade@...

<mailto:lfrade%40cablevision.net.mx> >

Subject: Re: Re: Caffeine vs CSF: Are you

sure?

To: " Holmes " <shelleyholmes08@...

<mailto:shelleyholmes08%40yahoo.com> >,

"

<mailto:%40yahoogroups.com> "

<

<mailto:%40yahoogroups.com> >

Date: Tuesday, November 15, 2011, 10:10 AM

??????A symptom of high intracranial hypertension is falling sleep, so if

you

drink coffee and then sleep then it seems it is causing this too, is n©öt it?

From: Holmes <shelleyholmes08@...

<mailto:shelleyholmes08%40yahoo.com>

</mc/compose?to=shelleyholmes08%40yahoo.com> >

Date: Tue, 15 Nov 2011 07:57:15 -0700

To: "

<mailto:%40yahoogroups.com>

</mc/compose?to=%40yahoogroups.com> "

<

<mailto:%40yahoogroups.com>

</mc/compose?to=%40yahoogroups.com> >

Subject: Re: Caffeine vs CSF: Are you sure?

Wow . . . I've been told by anesthesiologist that caffeine helps leaks and

to use it (back in 2001) as well as lying down when I was frustrated and

didn't want a blood patch( long story) but this is the first time I've read

where people do the same thing I do and fall asleep sometimes after drinking

a cup of coffee or caffeinated drink.

I don't feel so weird now! ?Not that it fixes all my issues but drinking

coffee or sipping coke when I have a severe headache helps. ?Coke (the

drink) helps with pain and nausea if I sip it soon enough when I know the

pain is increasing.

Just my 2 cents, as always check with your own physician:)

Take care everyone,

Holmes

?

?

[Guest guest]

, yes! I was going to mention the with draw headache but as any mother of

kids, I'm supper busy!

Thank you for clarifying my thoughts!

Big Hug!

Bea

Sent from my Verizon Wireless BlackBerry

Re: Caffeine vs CSF: Are you sure?

I have seen this discussion a lot lately. I feel I will put my thoughts in also.

Since April 2007 I have been hospitalized off and on with sever headaches that

can not be controlled with pain meds. My NS at the time is a chiari specialist

and he put me on a caffine iv drip. He advised me that the amount of caffine may

make me very wired and awake but could help with the headache. Within 30min I

was sound asleep and finally had some relief. Fast forward 2 years I was

diagnosed with several small holes in my dura causing a chronic spinal leak.

Again they treated me with caffine iv drip and it was the only relief I got.

However once discharged they knew I would not be able to continue iv caffine. So

I was advised to increase my caffine daily and when my headaches become

unbareable to try something such as no dose(200 mg) of caffine to help relieve

the headache. To this day it is one of the few things that help with my

headaches. I have not found a NS that

will help with the chronic leak. I also suffer from blockage of CSF. I do not

intend to say this helps every one but it does help me. Like so many things for

us with chiari what works for some does not work for others. I hope this info

will help others.

Shauncey

Decompresion 01/07

Revised 03/07 and 07/07

Bacterial meningitas 02/07

EDS

Sent from my Verizon Wireless Phone

[Guest guest]

No, we're talking about ICP.  said that " hypertension " is used in Spanish

as to mean both CSF pressure and blood pressure.  In English, hypertension is

used to talk about BP, not ICP.  That's what we're talking about.

In that, caffeine increases the production of CSF, thus increasing ICP for those

with CSF leaks (like me).  It does work, for sure.  I take dolgic which has

caffeine in it.  Works like a charm.  (I would drink sodas but I stopped 21

years ago and haven't had one since...

Subject: Re: Caffeine vs CSF: Are you

sure?

To: " "

< >

Date: Wednesday, November 16, 2011, 9:12 AM

 

My brain is refusing to work.... Are y'all talking about neurally mediated

hypertension? I was diagnosed with that by my cardiologist along with my chiari

diagnoses. It took care of itself after decompression surgery. An interesting

note...my cardiologist told me that coffee would help relieve neurally mediated

hypertension (this IS referring to blood  pressure here).... Blessings, Cortney