New and Not so New

Options
Snugelbear
Snugelbear Posts: 3
in Introduce Yourself
Hi There!

My name is Tracy! AKA Snugelbear! I have about 50 + pounds to loose. In my case if I don't I will go blind. I suffer from a condition called IIH or Idiopathic Intracranial Hypertension with swollen optic nerves. I also have PCOS. I am looking for friends and support to help with motivation that will work both ways. I have lost 8 pounds so far and am willing to do what it takes. My toughest challenge, especially with the medication is getting moving. The IIH causes severe headaches so it is hard to get moving sometimes. I like to walk when my head isn't killing me. I live in the Kitchener/Waterloo area if that helps.

I figured this is as good a place as any to start to here I am Hello !:laugh:

Replies

  • alexandreariddle
    alexandreariddle Posts: 21 Member
    Options
    Hi there! I'm sorry that you have this health conditions, however I am heartened by your want to overcome! I'm not personally familiar with these conditions, but I can understand about the debilitating headaches. I have a nervous disorder that causes me to have headaches so bad I lose vision and consciousness. My fiance also sufferes from such headaches as he has a brain tumor that sits above his optic nerve. If you are looking for support, this is a great place to get it. This truely is a wonderful community! I have sent a friend request for you. I welcome you and I hope your journey is bountiful.
  • jeanbattalia
    jeanbattalia Posts: 27 Member
    Options
    Hi Tracy!

    Welcome! Wow! Good for you for getting out there and doing what IS within your power to get healthy! You are an inspiration to me! I cannot personally relate to having IIH, nor PCOS, but I am happy to be a source of support on your journey toward health! I have sent you a friend request.

    Jean
  • Stacey984
    Stacey984 Posts: 27
    Options
    Welcome Tracy!

    I think you will find that the people on MFP are awesome motivators! I have never heard of IIH or PCOS either. I've suffered from migraines but once I started eating better they went away. Glad you are here! Let's do this!
    Stacey
  • Snugelbear
    Snugelbear Posts: 3
    Options
    Thank you Everyone! PCOS stands for Poly Cystic Ovarian Syndrome, It already makes me insulin resistant, along with that I have Endometreosis and Adenomyosis so my hormones are constantly fighting. IIH is a build up of spinal fluid in my brain. It acts like having a brain tumour without actually having a brain tumour and in my case fluid not only builds in my brain it also is pooling in my optic nerve. Just in case any of you are interested. IIH hits 1 in 100 thousand women of child bearing years and they do not know what causes it but seems to be most prevalent in women who are obese, we do know that weight loss seems to help bring down the pressure in some but not all cases, hell what do I have too loose but a some excess body fat! :-)
  • Ms_Chai
    Ms_Chai Posts: 86 Member
    Options
    Good luck Tracy! I was diagnosed with IIH about 2 months ago and it has been pretty rough. The headaches, dizziness, visual loss, and all of the mental symptoms (memory loss, confusion) really make exercising (and existing) difficult. I have lost 13 lbs since my diagnosis, though. The thing I keep telling myself is that it may be the only thing that keeps me from getting a shunt.....and I REALLY don't want that surgery. So, again, good luck, and I hope you find your motivator and can kick this nasty IIH in its ugly rear!

    Also....what was your opening pressure from your LP? I don't know anyone else with this....mine was 41.5 cm H2O.
    Also....are you on Diamox? I hate that stuff. When I exercise it makes my whole body go tingle and numb :(.
  • amethystsilverdragon
    amethystsilverdragon Posts: 1
    Options
    Hello,

    Also 28 and my opthal consultant thinks I have IIH (based on chronic papilloedema) following a viral infection and lots of stress - how's everyone doing? Am trying to save sight too; also motivated by not wanting another lumbar puncture nor hospital stay!

    The lumbar puncture was a few points about maximum acceptable pressure.

    Am using a combination of sacral cranial therapy (worth every penny), meditation, swimming, yoga and a very low calorie diet, combined with terror and anxiety. Five weeks in, my sight isn't blacking out every time I change posture but my head's recently started thumping again. I'm grateful that I no longer have double vision and that a short dose of medicine saved the sight in my good eye, yet....

    It's really hard. What helps you?

Categories