Pseudotumor Cerebri (IIH) and weight loss.

amorgan101187
amorgan101187 Posts: 129
in Motivation and Support
Hi Everyone.

I am looking for fellow mfp friends who have the dreaded IIH. I was recently diagnoses, a little over 2 months ago. In the beginning I had papilledema, and had gray floaters in my left eye. Once starting Diamox within the first month the gray spots turned to blur spots and the blur spots then went away : ) My vision is now back to normal (THANK GOD)!

I was 195 when diagnosed, I am 5'2 and now I am 184. I recently started working out more than i was and my symptoms, primarily the horrible headache has gotten worst. My vision is still normal, on occasion mainly at night, sometimes early morning I still get the whooshing noise in my ear (left only). The whooshing is odd because it started after i began the Diamox, I did have a one month check up and the swelling of my optic nerves and the pressure on them had gone down but not significantly.

I am looking for anyone who has IIH to give me some advice on workouts, how to manage the headacehes, and basically your story : ) My main thing i also want to know is whose symptoms got worst when they began working out and what did you do to help this? I have read online that it is common for symptoms to get worst during exercise as BP rises the ICP can rise as well (makes since) but I can not give up exercise if I want to lose weight to make this all better.

I do NOT want a shunt, and am praying on my check up on the 13th that my levels have still continued to go down.

Replies

  • JackieLM
    JackieLM Posts: 127 Member
    Wondering about what happened... I have found out today that I may have a tumor but it is more likely pseudotumor cerebri... very scared and nervous about what is gonna happen at my MRI on Friday.
  • wendyland
    wendyland Posts: 2
    I also have IIH. I was just diagnosed a month ago, but think its been going on for possibly years. I've lost about 13 lb. so far. I want to lose a hundred. It's hard since I get dizzy when I exercise .
  • Stripeness
    Stripeness Posts: 511 Member
    Hi Wendy!

    Nice job on the progress with your weight! I'm working on mine too - IIH is certainly a motivator :-)

    Right now, I've just done a few months on Diamox. Since 2009 diagnosis, I've tried it on and off, but the side effects are just horrible for me. To be fair, it seems like there's a huge range of experiences people have with it, and it's great for some people.

    Dizzyness when you work out. Yeah. Have you experimented with different types of exercise? I can't swim (VERY frustrating as a former competitive swimmer). It gives me weeklong headaches. In the gym, standing up doing dumbell work makes me dizzy. BUT, walking is okay. Sitting, laying down gym work is okay - even decline press (go figure?!). I can max out on bench press, but going too heavy on certain other things brings on pressure/headache :-/

    It's really frustrating, and sometimes not immediately obvious why an exercise is problematic. Like everything else about IIH, it's extremely individual. So my recommendation is to be gentle with yourself and do lots of careful experiments to find what works for you. Also, if you use an app like MapMyRun for walking, cycling, etc., you might be pleasantly surprised by the effectiveness of what feels like a slow, gentle pace.

    Good luck, and if you think it would be helpful, you're welcome to friend me :-)
  • missalisamel
    missalisamel Posts: 13 Member
    Hi ladies.

    I also have IIH. Diagnosed February 2011. VP shunt in April 2011. I've had the shunt replaced twice since then. Not to mention other issues.

    I was going to the gym consistently last year but then when I got unwell over the summer holidays (I'm from NZ so our summer is Dec/Jan/Feb) I never made it back. Things have settled somewhat since earlier this year and I need to get myself back to the gym and watching what I eat (hence my MFP sign up).

    I found I could workout and lift at the gym but if I overdid it I got a headache (even with a shunt, the pressure rises and it takes a while for the shunt to lower it again). as long as I keep my head above my heart I seem to be OK. Bending over or doing some floor stuff was a bit hard.

    I hope you are all well and IIH is not making life too hard.

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