My Christmas present was an IIH diagnosis....

My Christmas present was an IIH diagnosis....

Hello! After browsing other IIH groups (mainly FB ones), I feel more comfortable here......

Went to my ENT with wooshing sound in right ear July-ish of 2014. I was worried I was going deaf in my ear (hello concerts and listening to loud music in my 20's!). Hearing is fine, but sent for MRI. MRI shows Optic Nerve swelling. Refers me to a specific Ophthalmologist who is so busy, her team tells me there's a 4-5 month waiting list.

I finally see her in December 2014. Go through the gambit of tests for 4 hours. Confirms that I do have significant swelling. Wants me to see Neurologist and Endocrinologist that week and wants an LP and MRI done right away.

Long story short....all of this is done week before/of Christmas. LP showed I had a pressure of 50. So, I'm put on Diamox right away....stair step to my current 1500mg/day dosage.

I do have headaches, but they tend to be very sporadic. My problem was the annoying swooshing that sounded like someone screaming in my ear. It now has lowered significantly in sound. Retest of my vision shows some slight decrease in optic nerve swelling.

They want me to exercise and lose weight. Despite diet and exercise, I put on 30 lbs this year after getting Mirena put in at the beginning of 2014. They think this might have been a factor. So, I got it removed.

So, I'm on the 1500mg/day of diamox. I'm drinking coconut water to get my potassium up. The tingles don't bother me too much, and I don't drink soda to care if it tastes bad. However, I'M SO DARNED TIRED!!! Does this eventually pass? If I'm to stay away from caffeine AND exercise, but the meds make me tired - it's fighting a losing battle.

Any tried and true measures or tips?

• 8422d, 16h

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BoldChoices • 422d, 4h

For me the first few weeks on the diamox really were horrible. I was tired all the time along with a multitude of the other side effects. I was diagnosed in late July or early August. I just had my check-up the end of December and while there is still some pressure on the optic nerve the doctors felt things were looking good.

I still have the whoshing sound in my ears though is is not as loud and no longer constant. I did lose about 25 lbs, the first 15 were because the diamox made me nauseated. My doctor said that in his opinion weight loss is one of the major contributors to getting rid of IIH. I've got a long, long way to go in that area.

I've found that staying hydrated is key to feeling less tired and reducing the side effects. I too have been working to increase potassium and reduce sodium intake. I have a banana and 6-10 dried apricots everyday and try to get other potassium rich foods in my diet.

Hang in there and keep working at the things you need to do. I figure a change in lifestyle like adding exercise and eating better is worth not losing my sight.

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BellaFiat • 421d, 18h

Thank you - and I agree about the exercise. I will try to add some apricots. I drink coconut water, which helps, but am looking for other foods to help supplement.

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skidizzle • 421d, 23h

How long have you been on diamox? The first few weeks I was on it I was pretty much useless, I could barely get out of bed. I lost 20kg purely through watching what I ate and my pain reduced greatly. I stopped getting headaches after about a year but the wooshing stuck around for a while after that. It has been three years since my diagnosis and my neurologist has just told me that my eyes look completely normal now.

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BellaFiat • 421d, 18h

They started me with 500mg/ Day on Christmas, upped it to 1,000 mg/day last Thursday (1/8/2015), and had my vision rechecked. Swelling went down some but he wants it down fast - so he upped it to 1,500mg/day effective Tuesday this week (1/13/2015).

I have crossfitted/weight lifted for the past 2 years. I used to always feel better AFTER I worked out. I figured yesterday, I'd push myself through the exhaustion to go lift some weights. Yeah....I didn't count on being dizzy. I am just wondering with the large increases in short about of time - my body isn't used to it yet.

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skidizzle • 421d, 10h

Yeah I would say your body has to adjust every time they increase your dose. I was put on 500mg for a week then upped to 1000mg. It probably took about a month from when I first started the medication for my energy levels to go back to normal.

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GirlnTheOtherRm • 421d, 22h

I have to say be careful of the FB groups, especially if you're empathetic as I took on many a symptom of others while in them... Once I left & stopped reading all the bad things that were happening, I got a lot better.

I have a tumblr : IIH-and-me.tumblr.com & if you scroll back far enough (past the words of encouragement & the like) you'll find a lot of good info on what foods to avoid to make things better, meds that are ok, and a bunch of other stuff... Sorry, I've been awake for 19 hours & I'm a bit tired.

Hope your positive journey continues & that with the weight loss your symptoms dissipate.

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BellaFiat • 421d, 18h

Thank you - and yes, I am an empathetic person. It has made me very concerned because everybody seems so miserable and complains. Any time I ask for input/advice, it would get shot down immediately with negativity.

I will check out your tumblr. Sounds like a great resource!

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GirlnTheOtherRm • 420d, 22h

It is a lot of that & it really pulled me down. I try to keep it light, I've got a good group of IIH friends on tumblr & we all try to uplift each other as we all know how shitty this thing can be.

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