Re: Caffeine vs CSF: Are you sure?

[Guest guest]

Some advice says take caffeine (to me that means drink coffee, maybe decaf)

and some advice says avoid caffeine. Which is right?

Assume we follow the idea that coffee boosts CSF production. If you have a

CSF leak, maybe extra CSF will allow symptoms to subside for several hours.

But if you have a blockage, or a syrinx, wouldn't extra CSF cause more

problems?

Response:

Caffeine will increase intracranial pressure. If you have more headaches

when you are laying down, then you don't want to increase your caffeine

intake.

If you have more headaches when you are upright, then you could try

increasing your caffeine level. Your headaches are more likely to be on top

of your head.

Kathleen

[Guest guest]

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]

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]

I just know mine is low from the holes in my Duran seen in both surgeries and on

MRIs. Dolgic does work...

From my Android phone on T-Mobile. The first nationwide 4G network.

----- Reply message -----

To: < >

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

Date: Mon, Nov 14, 2011 4:27 am

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]

For what it's worth, my neurologist prescribed dolgic (which has caffeine) for

my low pressure headaches caused by my swiss-cheese dura (lots of holes and

spontaneous leaks).  He said caffeine causes CSF pressure to rise and

counteracts the loss of CSF through leaks. 

Take it FWIW...

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

To: " "

< >

Date: Sunday, November 13, 2011, 10:28 PM

 

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]

I never heard of the caffeine drips! Wish I woulda known...! No amount of pain

meds worked for me. Then One time I was in the ER because the pain was

unbearable. Of course they gave me a migraine med as they were sure it was just

migraines and started dumping fluids in me (I had been unable to drink for a

couple days due to nausea and had been throwing up, so was pretty dehydrated).

They gave like an hour for the med to take effect which it, of course, never

did. Finally, the doctor decided to give me Torodol intravenously. They gave me

what they'd give someone coming out of surgery. They said that it was something

they could not give me more than a couple times though as it was a very strong

drug. That was the first time in a year that anything had touched the pain.

Literally, within 15 minutes I was sitting up and wanting to eat! It lasted 24

hours and then dumped me off the edge again, but I sure enjoyed those hours!

After that, I had read somewhere

that caffeine may help so I decided to try it. Mornings were the worst for me

so I made 2 cups of double strength coffee the night before. In the morning I

had my sister heat it up and bring it to me. I couldn't sit up so I laid on my

side and propped myself up enough to sip it. (I hated coffee at the time!)

Within 15 minutes I was sitting up and was able to get up within 30 minutes! I

couldn't believe it! So, I got to where I was drinking 6 - 8 cups of double

strength coffee a day. It made it possible for me to function so I was able to

work some again. I still drink coffee when I get a pressure headache. I don't

know how to describe it, but in the lasst 4 years I have gotten to where I can

tell when mine is a pressure headache from blood or CSF.

How the caffeine works is it dialates, or opens up, the blood vessels making the

flow to and from the head more normal. It was described to me that with the

small amount of room back there already, any little swelling inside can pinch

off the vessels either trapping the blood and CSF in or out of the head. Both

cause intense pain. So, caffiene dialates the vessels enough to get the flow

better and thus relieve the pain. Don't know if that makes sense but it's hard

to describe on paper... Blessings, Cortney

[Guest guest]

Forgot. I also would drink it at night which my dad was convinced would keep me

awake. But it would actually put me to sleep! I think maybe because it was

relieving the pain...? Anyway, just a side note! Blessings, Cortney

[Guest guest]

From what I was told, caffeine will help either way. I would just experiment

with it and see what works for you. Not everyone responds to caffeine either.

Blessings, Cortney

[Guest guest]

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 only problem with that theory is the fact that the caffeine eases the pain.

If it's causing intercranial hypertension it would increase the pain I would

think. I was told by my neurosurgeon and cardiologist that it made sense for it

to have helped me like it did as it would help the blood and CSF flow... Anyway,

just a thought. Blessings, Cortney

[Guest guest]

I know I always drink a soda with caffeine in it and it helps to keep things at

bay.  I of course suffer the withdrawal headache if I stop, but then more

chiari headaches ensue as well.  I can drink it up until I brush my teeth and

go to bed and have no issues falling asleep.  Interesting thread.

 

in Texas

 

To:

Sent: Monday, November 14, 2011 2:58 AM

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

 

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]

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