how much water and or caffeine

[bigcheese]

hello all,

i had my first csf leak 2 years ago after a coughing fit and went undiagnosed at a philly teaching hospital until i finally developed a hematoma. after successful surgery to remove the blood/pressure, and several lower spinal blood patches, they said i was cured. i wasn't. i made appointments in allentown and NYC, but got into allentown first. i was given another blood patch high up the same day of my first visit and thought i was cured. i kept my appointment in NYC and was told that it looks like the high patch worked.

for 2 years i've felt pretty good, with only an occasional strange feeling in my head. i have developed the talent of never sneezing (almost). 2 weeks ago i sneezed twice before i could stop them and knew 1 more sneeze would have put me in the hospital. hard to describe, but i could feel the balloon in my head about to pop.

have been mostly on my back since. tried indocin (kills my stomach, actually painful) and caffeine. i am also trying a steroid taper. getting some relief, but have given in to going back to allentown for an opinion.

that's my history. my question is what has been working for you?

i've read some posts about tons of water. any comments?

i'm not wild about caffeine, but it seems to work. i'd rather take straight caffeine (tablets) than drink coke, but are any of you seeing benefits to spreading out the caffeine intake throughout the day?

any other success stories? i've got an 8 year old daughter that shouldn't have to spend most of her dad time with me being horizontal.

thanks to all who can respond!

big cheese

[Concerned Gal]

Oh no! I'm sorry to hear that you've had a re-emergence of symptoms. Unfortunately I feel like leakers are forever, the symptoms just range from barely noticeable to really bad.

As for water, i drink one glass as soon as I wake up, 2L between 9am - 5pm, and a couple of glasses before bed. Probably close to 3 L a day. I also try and eat all the time (ie small amounts) as I've noticed that the better fueled my body is the more I can deal with. I carry snacks everywhere!!

As for caffeine, I've tapered mine off as I had a few instances where I thought I had more symptoms with the caffeine. When I was on caffeine, I was drinking 3-4 glasses of coke between 11am - 6pm. This got me to an improved state (not good, but improved).

Also, been on theophylline (medication with caffeine) - didn't drink Coke when on this. I think it was 200mg twice a day. Didn't notice much of a difference with the coke. I actually preferred the coke I think as I felt a bit more in control. ie was feeling the pain so drank more.

I'd send a couple of weeks laying round, no bending, total rest, plenty of food and drink and see if it improves. I've really noticed if I try and stay as straight as possible and not turn my head at all I feel better. If not, I'd try another blood patch, then if that doesn't work, go for a ct myelogram to see where the leak is.

Hope that helps! Best of luck.

[LauraL840]

I'm so sorry it's back! My DH has a leak and we have 3 kids (8,5,almost 3) so I know how hard it is for you and your DD.

DH's leak is from an LP, however in my research to find him some relief I've come across some information about 'abdominal binding' that's been mildly helpful for my DH. We've tweaked it a bit, but essentially we're using a brace used for broken ribs, it's 6 inch wide elastic with velcro end. The elastic is MUCH tighter than 'ace' bandage and we got it at a medical supply store. He places one of those 'stress balls' (the kind you knead in your hand that's firm but squishy) in the area he had his LP and then binds it with the brace. He does get relief, but it also kinda drives him nuts after a while. We know an engineer who had PDPH (post-dural puncture headache) who 'thunk up' this and used half of a tennis ball on his back and got total relief and healing.

Now, I know our sitch is different because it's PDPH and not spontaneous, however the premise behind abdominal binding is similar to EBP. It's a pressure bandage, just like what EMT's would use in the field to stop an arterial bleed and pretty much part of what makes EBP effective.

You can also purchase an abdominal binder at a medical supply store. I'll try to find the article I read on this and post the link.

Best of luck to you!

Laura

[Edward]

Hello Laura,

That abdominal binder is an interesting thought and it makes sense too. Too bad us cranial leakers cannot come up with something like that. Maybe I could just wrap duct tape real tight around my head in the hopes of forcing my skull bones back together! LOL:D

Take Care...Ed.

[bigcheese]

the allentown dr. got back to me today and said to rest for 3-4 weeks and see if i get better.

[LauraL840]

Well that sounds like a load of bullhooey to me! 'Rest'???? for 3-4 WEEKS! Exactly how does this doctor define 'rest'? Is that flat on your back or hanging out at home? That's nuts. I get it that some people's leaks 'resolve' on their own, but you've established a leak history. Why wait 3-4 weeks to then have to make an appointment for EBP, then have to wait till an opening is available which could take another 3-4 weeks? Sorry, that just stinks!

[Baffled]

I agree with Laura. I do not see the benefit of bed rest for that length of time, especially with a known history of a CSF leak. I would seek out an EBP sooner than later. Not only is it the most conservative but it has the lowest amount of risk associated with it. You are entitled to receive relief sooner.

I had the opportunity to experience a significant leak back in July and have been on the mends since then. At that time, I was on bed rest for a solid 6 weeks. I left bed only to use a commode or go for a doctor’s appointment/test.

Upon visiting with my doctor last week, he indicated that if/when this presents again, to rest for couple of days. If my symptoms do not resolve, I am to call him at that time. I have a high tolerance for pain. He told me it was not necessary to "tough it out" for more than a couple of days and certainly not more than a week. He shared that it is not harmful to wait longer it just is not necessary.