Hey its me again if you remember young former Marine,  I been Mia for a bit, took the va 2 years to finally put in a shunt. Iv lost alot of vision more like blind spots. I refuse to take any va meds it turned into a cabinet full of skittles.  I'm trying to work out but the second I get going with strenuous activities my vision goes bad to where I can't read anything.  Any input on this?

hi, good to see you back.  do you feel better overall since the shunt?  is it a VP or an LP shunt?

regarding working out.  I was married to a military guy years ago and I know how you guys work out.  I'm wondering if you adjust the typical workout if you can make it work better for you.  do you know what a Valsalva is?  it's when you are grunting or straining, holding your breath.  it will increase your ICP.  if you can make sure to never do that while you lift weights, then you might have less issues with your ICP going up during a workout.  just keep breathing through it.  you may not be able to lift as much weight, but I know there are ways to lift that can accomplish good muscle development without lifting heavy weights.  you could probably work with a personal trainer on that.  slower or more repetitions with less weight, I think.  don't hold your breath or grunt.  

exercises that work better are walking, yoga, pilates, less strenuous things than running or sports.
when I was sick I couldn't run without feeling dizzy and weak.  I am better since jaw surgery.  moving my mandible forwards seems to have changed the way Valsalva affects me.  used to be I could hardly move my head without feeling dizzy, I couldn't shout across the street.  after jaw surgery that is gone.  my ICP dropped from 23 to 14.  are you dealing with sleep apnea?  it's very helpful to get that treated.

I used to alternate 2-3 hour workouts and go to the gym 6 days a week, but developed an "exercise intolerance" with IIH. Bending, lifting, basically anything that caused any strain would bring on symptoms.

I worked with personal trainers at first, but they basically were only able to get me walking in the swimming pool or pedaling one of the recumbent bikes without symptoms. I was still struggling at that point and gave up because it was cheaper to buy a bike and ride at home.

I had physical therapy for an unrelated issue last year and had more success. They started me out with the lowest rep's and smallest weights. I was able to increase weights, resistance, and repetition, but it all depended on how I was doing that day. I tend to get frustrated and am only doing the minimum now, but haven't had a regular routine for over 15 years. I'm guessing you would be successful with a few adjustments. You may have to start smaller than you'd like, but should make progress if you pay attention to your triggers and limits. 

Let us know how it goes..I'd really like some inspiration to get back on track!
Good luck,
Julie

Can anyone direct me to any literature about iih connected with a traumatic  brain injury

I honestly don't know. I know IIH can be secondary to a lot of other conditions, so there's a possibility that it could be related. The Intracranial Hypertension Research Foundation (IHRF) is the lead in research for this condition, so you may want to contact them..there's a contact information page on their website ( http://ihrfoundation.org/ ).

I hope it helps!

here's a case report from 2012
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anything that can cause subarachnoid hemorrhage can cause IIH.

OSA can cause IIH, and I have seen an association of OSA with TBI.

Me again I am having an issue i have a metronic set at 1.5
I need to be in between 1 and 1.5. but at my current setting I get blurred vision and some times  I get low pressure headaches.. i'm soo confused?
what can I do, will a vp shunt be better than a n LP ( what I have currently )

I had overdraining issues with my LP Shunt, so had low pressure headaches every day. I was fine as long as I was laying down, but the longer I was up (whether sitting or standing) the worse my symptoms. It took several years for someone to figure it out because they kept doing spinal taps and my pressure was within normal range. It wasn't until I got to Cleveland Clinic before I finally had a surgeon that told me those tests aren't accurate for overdraining and they stopped using them almost a decade ago. Apparently, our CSF levels out when laying down and appears to be within normal range, but when they did ICP test (pressure gauge directly into my intracranial cavity) they confirmed my pressure dropped when sitting and even more when standing. They originally thought that maybe I no longer needed the shunt and did surgery to ligate the LP Shunt, but my high pressure symptoms came back with a vengeance and I ended up with a VP Shunt.

I wonder if you're having similar issues. I am fairly certain the overdraining caused my Chiari Malformation and I ended up with permanent damage between ligation and implant of VP Shunt, so don't wait too long to have the surgeon check it out!