Anyone else with IIH? (Idiopathic Intracranial Hypertention)

melissamellor1
melissamellor1 Posts: 6 Member
edited November 7 in Introduce Yourself
Hello all!

I was diagnosed with a rare brain disorder Idiopathic Intracranial Hypertention around 4 years ago.
Most doctors say weightloss will make anyone with this condition better.
Most sufferers with this condition who have successfully lost weight unfortunately still suffer from it.
Im still going to give weightloss a go and have so far lost 12lbs.
Just wondered if there was anyone else on here with IIH.
Please feel free to add me as a friend, if you have IIH or not - the more support we have in our weighloss journey,
the better!! :)

Replies

  • melissamellor1
    melissamellor1 Posts: 6 Member
    Nobody? I'm all alone with my dodgy brain? "Sad face" ;)
  • melissamellor1
    melissamellor1 Posts: 6 Member
    :(
  • Kayleighkaykay
    Kayleighkaykay Posts: 5 Member
    Hey! Sorry for such a late reply, I rarely come on these boards! I too have iih and am trying to lose weight. I'm very limited as the only exercise I can tolerate is walking and that's only on the days when I don't have a headache.

    I'm trying to lose weight and have lost 22lbs since my diagnosis in the summer. It's very long and slow though! Are you part of the iih uk group on Facebook? Feel free to add me on mfp, although my tracking is sporadic to say the least! ;)

    Hope you are having a pain free day xxx
  • tinileak92
    tinileak92 Posts: 45
    Hey! :smile: I was diagnosed with IIH in January this year, having a real rough time of late with this illness so havent been on this in ages! Doc has told me to lose quite a bit of weight to see if symptoms ease but the problem I have is doing exercise...I am the same with headaches, soon as I do anything overly strenuous for more than 15 mins I get the frontal pressure headaches. Trying to lose weight alone by just changing my diet now..love my chinese food and hot chocolates too much :tongue: although I am slowly cutting back on everything to see if weight loss helps..Hope you guys are well :happy: xo
  • melissamellor1
    melissamellor1 Posts: 6 Member
    Hello both of you! I mainly use the app on my mobile so don't really come on these message boards now.
    Just having a quick look! I'm on the IIH UK facebook page too. I've been on there since I was diagnosed and
    It has been a huge help to me. I think a combination of new medication an my weightloss so far is being a huge
    Help for me. I'm only having the occasional headache now which my surgeon told me is normal, and I can cope
    With that. As long as I don't have to go through any more shunt surgery! (Fingers crossed)
    Hope you're both having a good day!x
  • carolynnawilliams
    carolynnawilliams Posts: 6 Member
    Hello! Me too!
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