Intracranial Hypertension and weight loss

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michelleengland13
michelleengland13 Posts: 18 Member
in Introduce Yourself
Hi everyone, I'm new to MFP and am looking for some support. I started my journey a few years ago at 332lbs. I woke up one night and could not see out of my left eye. I could hear the whooshing of my heart beat in my ears all the time, and the natural blind spots that everyone has were getting more pronounced. I had intolerable pressure headaches everyday, all day.

I went to my doctor who saw my optic nerve was extremely swollen. She sent me to an opti-neurologist who initially told me it appeared I might have a BRAIN TUMOR. After further tests he diagnosed me with Idiopathic Intracranial Hypertension. It boils down to my body either produces too much cerebral spinal fluid, or it does not drain enough. This results in too much spinal fluid which squeezes my optic nerve killing it slowing, hence the vision problems, pressure headaches, and will eventually lead to blindness.

He said there is no know cause of IIH but it is found in overweight women of childbearing age. After a spinal tap to immediately alleviate the excess pressure I have to take some heavy medication to keep the pressure low. There is no cure and the only thing they know to have any effect is to loose weight.

So I know its a long story but I am having a hard time. I wanted to find a place to meet other people who NEED to loose a lot of weight. I want to be able to watch my daughter (8 years old) walk down the isle and I want to be able to see my grandchildren.

I've previously gone from 332lbs to 241lbs (size 28 to size 20), about 90lbs lost over 2 years!! Then went through a fairly messy divorce and lost my way. I went to the doctor and weighed in at 282. My realization day was wearing my skinny (size 20) slacks one day and went to sit down at the hair stylist.... I split the rear of my pants. I don't know how no one noticed but I managed to make it home no one the wiser.

I started eating better and getting back in the gym in January. I am down to 255lbs but have hit a wall. Any advice, recommendations, or just friendly advice would be so appreciated!!!

Replies

  • michelleengland13
    michelleengland13 Posts: 18 Member
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    Oh and forgot to mention. I have been doing water aerobics a few times a week, plus some weight training at home(lunges, squats, upper body). I have been concentrating on avoiding highly processed foods and am sticking with a low carb diet. I drink about a gallon of water a day and have started taking Double X multi-vitamin supplements. I eat six small meals a day 2-3 hours apart.
  • bonjour24
    bonjour24 Posts: 1,119 Member
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    i don't really have any new ideas that other posts won't give. we all know losing weight is a case of eating less and moving more. but i just wanted to wish you luck. i've found this site to be really motivating and supportive, and the food diary really helpful.
    i guess the best tip i have is at the start actually weigh and measure things so you know how big the portion is meant to be, and how many portions you are really eating- do you actually know how tiny a portion of cake is? i was eating about 4 serves in 1 go, thinking it was 1 serve!
  • pinkita
    pinkita Posts: 779 Member
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    Hi Michelle,

    First of all, if you haven't already, sign up on dailystrength.org and look for the Pseudotumor Cerebri (another name for IIH) group. And register with the IIH Foundation (both of these are free). IIH does not just affect women, it also affects men and children, and also women who are not overweight.

    As for your plateau, how long has it lasted, and how long did it take you to go from 300-something to 255? For most people who are losing a large amount, it is common for it to occur slowly. I met a woman a few months ago who lost 128lbs, and it took her a little over 3 years to do so. She also had a plateau that lasted 9 months! But she stuck with her exercise and eating plan (Weight Watchers), and she finally broke through her plateau.

    Take a look at what you're eating--i.e., are you eating the same foods over and over? Doing the same exercise over and over? etc. You might need to shake things up a bit in those two areas. I just joined MFP and customized it to show how much sodium I consume, and I was shocked when I saw how much sodium I had in a day! So I make sure to monitor that now because too much causes water retention.

    Maybe try all natural foods for a week--i.e., no processed foods or snacks but rather fresh and prepared at home.

    Everyone says plateaus are part of the weight loss journey. Just don't get discouraged; you've done so well!
  • michelleengland13
    michelleengland13 Posts: 18 Member
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    I am a member of the IIH Foundation, I try to keep as up to date on any news. I do eat a lot of the same foods, I never crave variety and I find it helps keep me on track. Plus I don't have a lot of free time to cook. I will try weighing my food and shake up my menus and exercise routines and see if that will help!

    It took me 2 years to loose 90lbs and it was the best thing I ever did. It seems like every day I had something new happened that helped inspire me.

    I will never forget the first time I was able to chase my daughter down the street (playing). She took off and I started after her, after a few seconds she turned around because she was used to me only making it a few feet. That day I was able to run for the first time since I was in high school. I will never forget the look of surprise and delight on her face when she turned around and saw me right behind her!!!
  • withchaco
    withchaco Posts: 1,026 Member
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    I will never forget the first time I was able to chase my daughter down the street (playing). She took off and I started after her, after a few seconds she turned around because she was used to me only making it a few feet. That day I was able to run for the first time since I was in high school. I will never forget the look of surprise and delight on her face when she turned around and saw me right behind her!!!
    That must have been an amazing moment. I'm sure as you continue walking the healthy path, you'll find many more moments like it.

    You've done great so far. Keep at it, and don't let the plateau stop you. When I first started my new lifestyle, my dad (who is a lot more fitness-knowledgeable than anyone else around me) warned me repeatedly how I WILL run into plateaus, and how I must not stop.
  • myheartinsf1
    myheartinsf1 Posts: 70
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    Friend request sent :)
  • michelleengland13
    michelleengland13 Posts: 18 Member
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    Thanks for the support! I am trying not to get discouraged. I am just going to focus on one day at a time.

    Myheart- thanks for the request I was hoping to meet some new friends on here!
  • mrrodriguez
    mrrodriguez Posts: 158
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    Hi, I wish I had more ideas for you, but I am sure if you get active with MFP and open your diary, others will give you lots of ideas. I didn't have the scare you did, but went through a brain tumor with my wife over 10 years ago. It totally changed our lives, and she can no longer drive, and is on disability. I am her support, taxi service, and handyman.

    I have become concerned about my own health as I went from 150 to 215 pounds over a five year period. I had some kind of weird stomach problem that made me nauseated all the time. The medication for the nausea made me crazy hungry. I think it increased the weight gain. I now have low thyroid, hypertension, high cholesterol and sleep apnea. Many of these would improve if I could lose a significant amount of weight. I hate having to use a C-PAP to bed every night, and hate all these meds to control my symptoms. So in a way I NEED to lose weight too.

    I used to be active and am trying to get back on track. Feel free to add me as a friend if you like. We can all do this together.
  • michelleengland13
    michelleengland13 Posts: 18 Member
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    I am sorry to hear about your difficulties, but I am here if you need to talk. It amazes me sometimes that it can take such a hard slap in the face to realize how unhealthy I was living. All health problems aside I was 332lbs... how did I let myself get there? I am glad to be meeting new people on this journey.
  • pinkita
    pinkita Posts: 779 Member
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    I agree, it's very nice and so important to be able to go through the challenges with others who understand!

    Have you been doing the same exercises for a while? Your body might be too used to them. As for the food, if it's too hard to change what you're eating, maybe you could try changing the times you eat, or changing the time you have your biggest meal of the day. Start there and then gradually mix it up by adding a new food (or a food you haven't had in a while).

    I often get into a routine with my eating and stick to the same foods for a while because it's easier to not have to think about it, so I have to remind myself to vary my food intake. I had been avoiding salmon for months because I thought one fillet was too many calories/fat/etc., and then I thought, "Hey, I don't have to eat the entire fillet!" So I'll have a 4oz portion and I'm satisfied because I have veggies, salad, and some type of starch with it. I forgot how much I liked salmon! :)

    Another helpful thing is spending a couple of hours on a weekend preparing and measuring food ahead of time.

    I've had weeks here and there when I gained, and it felt like someone kicked me in the gut because I had no idea why. A lot of the tips here can help conquer your plateau. Hold on to those moments like the ones you described about playing with your daughter--you couldn't do that not too long ago, so remember things like that when you're feeling discouraged.

    And of course you can always vent your frustrations to us :)
  • JJtexasgirl
    JJtexasgirl Posts: 106 Member
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    Friend request sent. I also see that you live in Round Rock. So do I! Maybe we could meet up to walk or what not. It would be nice to have a IRL person to help motivate me.
  • hamsio
    hamsio Posts: 26
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    Bumpign this after a long time.
    I was diagnosed with intracranial hypertention last year in february and then had shunting surgery in April to help drain fluid as medication wasnt working. Its almost a year since my surgery.

    I know weightloss will help me.

    On a not as nice note the last two days I am having headaches like I was right after surgery... amazing pain. And I am worried about possible blocking in my tube. If I am in pain again tomorrow might have to contact hospital.

    But it made me wonder if anyone else on here was going through the same thing.
  • Barbmillions
    Barbmillions Posts: 13 Member
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    You have won this battle before and you can again. You aren't alone in your struggle you have friends on this site to support you.

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