_{Shunt evaluation for issues w/ overdraining/low pressure}

I have had daily headaches for over two years now. I go in to see one specialist and they say it sounds like low pressure headaches from shunt overdraining, but they do MRI or LP and test results are within normal limits. I had the last MRI in October and the doctor from Headache Clinic said it looks like my brain is sagging from low pressure/fluid, so they want me to have shunt evaluated. I'm just wondering if anyone knows whether that will just be more MRI's and LP's or if there are other procedures for evaluating a lumbar shunt. Specialists that think it's low pressure seem to think it's overdraining when upright, so should do tests when upright. Other specialists say those results wouldn't be accurate. I can't get in to see the neurosurgeon until February and am just feeling worse, so would also take suggestions for increasing fluid..drinking more and eating salty foods was suggested by the doctor, but it doesn't seem to be helping.

I am also running out of FMLA time, so will have to wait for any procedures until I can reapply at the end of April..not sure how I'm going to make it through another six months if it continues to decline. I am open to any suggestions..

Hey Julie, want to take a trip to North Carolina? I just replied to Hemyinspain, who also has low pressure issues. Even she has heard of my Doc, Linda Gray. I will be moving to the Durham area within the next few months so you'll have a place to stay! You could also have your docs contact her for asistance if they are willing.
Hemyinspain also described some testing that was done to allow for continuous testing.

Congratulations Linda! I know you really like NC, so I'm glad you're able to work it out. I will definitely keep Dr Gray in mind!! Good luck w/ the move

Hey Julie, I find that I can give myself a headache, just by doing anything that requires exertion: if I sneeze, cough, bend over or poop, my head hurts! Do you get these also? Usually, if I lay down for a few minutes, it will go away, although sometimes I have to take a pain pill. I find that at some time during the day, I do better if I lay down for an hour or so. If I stay up all day (and all night - like at the casino!), I for sure need to lay down or the headache comes and won't go away.

I am wondering if this ever goes away. I have reduced the Diamox to just one 250 mg tab a day (used to take one 500 mg ER in the a.m. and two 500 mg at nite. I am thinking this has got to be low pressure from the shunt overdraining. Neurosurgeon thinks we can get a handle by adjusting the meds. AHe set the shunt valve to the setting I did the best at when I had the lumbar drain test.

Does all this make sense to anybody? Julie, is this similar to what you have?

It does sound like low pressure and Lumbar shunts are notoriois for overdraining.When I had my LP shunt, I was similar to you and I had mine for 5 years, but they wouldn't admit it was all down to the shunt until they revised it. How long have you been taking the adjusted meds for? It could be your body needs time to adjust to the new setting and adjusted meds, but to be sure your Neuro really needs to be investigating it to make sure it isn't down to the shunt.

Hi Linda! It's my understanding that the head pain w/ bending and straining is all a part of IIH..although I didn't experience any of it until I got my shunt. I have periods of time when it's better or worse, but it's never gone away. My neurologist told me to pay attention to the warning signs, which for me are tingling in face/hands, blurry vision, and pain in my ears..when these things start, I'm supposed to stop and rest. My pain is better now that I stopped pushing through these things, but my quality of life stinks.

Basically, I haven't found any pain medications, therapies, or anything that helps but laying down and drinking my fluids. I've been told that laying down is the only thing that helps a low pressure headache, but I think people w/ IIH generally have to pace themselves. If you overdo, you pay for it..like spending all night at a casino..lol.

Heidi's right, shunts are notorious for overdraining, but I'm honestly not sure why your doctor still has you taking medication..isn't the point of Diamox to remove fluid? If you have the shunt to drain off the fluid then why do you need the meds?? The side effects of those meds are 101 ways to kill you, so I think that's where I'd start.

I hope that helped. I'm off to the Cleveland Clinic next week, so I'll let you know if I learn anything new.

Take care, and keep me posted!
Julie

Julie, I also did not have headaches on exertion until I got my shunt! And of course, it doesn't happen all of the time. It is always better in the morning. The longer I am upright, the easier it becomes to give myself a headache.
I tried to go off the Diamox, but I started having a headache daily from that. It is a different kind of headache than I get because of exertion. I am only doing the one tablet/day now. Wonder if I should try half a tablet? My Neurologist is good about letting me experiement with my meds as long as I tell her what I am doing!!

Heidi, I have only had my shunt since Nov 1st so I am sure that my body is trying to get used to all this, as well as my brain compensating for all of the changes. I have been on just the one tab of Diamox since Dec. 20th.

My shunt valve is set to 90 mm!! That's low!!

Wylee wrote:

Hey Julie, I find that I can give myself a headache, just by doing anything that requires exertion: if I sneeze, cough, bend over or poop, my head hurts! Do you get these also? Usually, if I lay down for a few minutes, it will go away, although sometimes I have to take a pain pill. I find that at some time during the day, I do better if I lay down for an hour or so. If I stay up all day (and all night - like at the casino!), I for sure need to lay down or the headache comes and won't go away.

I am wondering if this ever goes away. I have reduced the Diamox to just one 250 mg tab a day (used to take one 500 mg ER in the a.m. and two 500 mg at nite. I am thinking this has got to be low pressure from the shunt overdraining. Neurosurgeon thinks we can get a handle by adjusting the meds. AHe set the shunt valve to the setting I did the best at when I had the lumbar drain test.

Does all this make sense to anybody? Julie, is this similar to what you have?

Actually, I can relate to all of the symptoms you mention here, and I do not have a shunt ... for whatever that's worth. I'm not sure if those symptoms are related to my higher or lower pressure days either ... I kinda experience them all the time ... but it definitely is much worse if I am exhausted like you said. I'm afraid it might just be the "nature of the beast" with IIH, unfortunately. :roll: