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Old 05-31-2017, 03:09 PM   #1
rellis10
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Default IIH (Idiopathic Intracranial Hypertension)

So if you're a visitor to the BHM boards you may have seen my rants about this before.

Around 2 months ago I was referred to hospital after a regular eye test spotted I had swelling at the back of my eyes. A few questions about headaches, blurry vision, and things started to sound familiar. From there I went through the basic blood tests, a CT scan and many... many attempts at a lumbar puncture before they finally realised my fat back is problematic for sticking needles into and got it right.

Long story short, the diagnosis was that bag of medical scrabble in the title.

The swelling in my optic discs is a sign of a log term problem that could result in severe vision problems/blindness. That is caused by higher than normal pressure in my spinal fluid, which in turn seems to be caused as a side effect of my weight.

The doctors don't know specifically what causes it, but as 90% of the people with it are apparently obese women, it's a fair guess weight has a part to play. Losing weight seems to be the only long term way to bring my spinal fluid pressure down and keep this under control.

Short term, I'm on medication called Diamox (normally a Glaucoma medicine) and I'm starting the long process of... yes, you guessed it... losing weight.

I started this process at 351lbs, I'm already down to 339. I don't like it but this has shocked me into realising my health and my vision means more to me than a number on a scale, I have to lose and keep losing until it's done.
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Old 05-31-2017, 06:02 PM   #2
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You must do what is right for you to be healthy.
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Old 06-02-2017, 01:43 PM   #3
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Vision (and health) is everything. I'm currently watching my mother lose her vision to macular degeneration and she is struggling. Do what you need to do. If you find yourself struggling, find a good therapist with whom you can open up to. All the best to you!
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Old 07-06-2017, 01:11 AM   #4
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Default Blood pressure controls

Sometimes our doctors need to add more tools to their medical kit. Blood pressure being too high is not only caused by excessive weight. Often there are additional things you can do and fight this thing on multiple levels. Here's some other stuff you can use at the same time.

1) Meditation. Find a happy place you can go to in your mind. If possible take a meditation posture. Focus inward. Some of us hum or chant if it helps. Some of us just think happy thoughts and chase negative vibes out of your mind. You can even do this while driving a car (don't shut your eyes tho). Identify the major stress in your day and work to eliminate of minimize what you can. Having a two hour commute each day was one of my major stress sources.

I finally trained myself to practice driving a car is not a full contact sport. I try to be calm, courteous, respectful of keeping a safe distance between cars. Play my favorite music on my radio or CD player. When I am in my car, I just drive. I never do other things like a rabid squirrel. I do not text. If I get a call - it has to be on my satellite radio, not a smart phone.

2) Learn yoga. If you are spastic or in danger of falling, do water yoga. If you fall in four foot of water, you will be safe. If you are afraid to wear wet clothes or show some skin - being in the pool with others will humble you very fast. In the pool, there are people in more trouble than you are in/ (For example they have legs but their legs no longer work. Or they have no legs - they have lost them in some sort of trauma like our veterans. In many of my pool classes there is a row of walkers, wheel chairs, etc, propped up on the wall next to the 3 steps into the water.

3) Cut back on the salt and minimize salty food. Add fresh spices or exotic tastes to take the place of salt. Tape over half the salt shaker holes. Identify the foods you eat with the most salt and find creative ways to reduce or replace them.

4) There are also machines that train you to lower your blood pressure. Also, find out an appropriate blood pressure cuff for your size and start checking your pressure regularly. If you need blood pressure meds - take them. Some of have to take a couple of different kinds.

5) Do some walking or some kind of excercise that makes you feel better. Do not dwell your problems. See someone you can help or talk to.

6) Visit a blood pressure chat group and participate, You will learn additional things that you can use.
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Old 07-06-2017, 05:59 AM   #5
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Just an FYI: IIH is not an issue of high blood pressure, despite the 'hypertension' in the name. It's a separate issue related to impairment of the spines safety valve system that allows cerebrospinal fluid to be effectively vented to the body as a means of regulating the pressure.

Unfortunately weight loss is usually the best long term approach to treat IIH. I hope you don't have the blinding, crippling headaches my friend had with her IIH.
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Old 07-06-2017, 09:06 AM   #6
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Quote:
Originally Posted by HereticFA View Post
Just an FYI: IIH is not an issue of high blood pressure, despite the 'hypertension' in the name. It's a separate issue related to impairment of the spines safety valve system that allows cerebrospinal fluid to be effectively vented to the body as a means of regulating the pressure.

Unfortunately weight loss is usually the best long term approach to treat IIH. I hope you don't have the blinding, crippling headaches my friend had with her IIH.
I actually just got back from a neurology consult about it and the swelling in my optic discs is a little better but not really improving like they wanted. So the Diamox is going up to 3 times a day instead of two and I'm getting booked in for a full-on MRI scan just to fully rule out other causes.

As it happens my blood pressure is on the high side but like you mentioned it's a separate issue to the IIH. It is getting better slowly as the weight is coming down though.

I hit a stall on the weight loss for a while and just couldn't shift anything but at my last weighing I'm down to 333lbs.
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Old 04-17-2018, 01:15 PM   #7
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I have IIH too. I used that diagnosis to get gastric sleeve surgery. within four months of the surgery, the IIH was gone. though it does feel kinda shitty to give up on the gainer thing, my health is so much better and I haven't had ridiculous pain like those migraines in a while now. I feel good again after a year of IIH basically making me a shut-in who hides on the living room floor with no lights on.
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