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 Manda - diagnosed January 2010

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Manda
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PostSubject: Manda - diagnosed January 2010   Tue Mar 01, 2011 10:54 pm

I am very new to IIH. Was diagnosed in January 2010 after loosing vision in my right eye. My eye pressures had been testing high so I was being watched for glaucoma. I had the diagnostic scans, and had a lumbar puncture. My opening pressure was a 37 and they brought it down to a 17. I have been taking Diamox (not sure if I spelled that right?) for 3 weeks now. I went in for an appointment a week ago and my eye pressures were higher than my previous appointment, but my doctor said that it might of just been a fluke that day. I have another appointment 1 1/2 weeks to test pressures and take scans of my disks.

In general things have been okay. I don't have too many headaches. I get minor throbbing my my eyes and my vision isn't always clear. My biggest struggle right now is honestly dealing with the medication side effects.

A little background info-- I'm 21, live in North Dakota (yes there are people up here Very Happy ). I work managing a daycare. I was going to the university, but I ended up taking this semester off, as it was getting too difficult to balance school, working full time, and doctors appointments. I was offered a promotion with work which would involve me moving and being regional manager of 4 daycare centers through-out the state. Though, I would really like to have this all under control before moving!
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Heidi
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PostSubject: Re: Manda - diagnosed January 2010   Tue Mar 01, 2011 11:51 pm

Hi Manada and a very big welcome to the group.Hopefully the Diamox will alleviate your symptoms, although I know the side effects are hard to tolerate at times. Has the vision returned to your right eye now you are having treatment? I will keep my fingers crossed for you that at your next appointment things have much improved.

Congratulations on the promotion, I think it is wonderful that you are determined to carry on with your career, and are positive that your symptoms will be under control for you to do that. It's a very good attitude to have. hug


Last edited by Heidi on Thu Apr 21, 2011 6:30 pm; edited 1 time in total
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Manda
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PostSubject: Re: Manda - diagnosed January 2010   Sat Mar 12, 2011 4:28 am

Had an appointment today. They said that my left eye looks pretty darn good, almost clear actually. My right eye is still looking bad, but "not as bad". So,I feel pretty good. I have another appointment in three weeks for another visual field test and more optic nerve scans.

Thank you for your comment, Heidi. I was looking through some of the other stories and you always have something helpful to say. That's nice for those of us that know so little about IIH. My vision is a lot better, but not totally clear. I still have trouble with blurring, flashes, etc. when I stand up or sit down, or get up, or pick up children- the list could go on and on. I also have trouble with the Diamox side effects. I think the constant feeling like the room is spinning is the worst.

Do any of you ever have trouble with eye twitching? My eyes have been twitching for weeks now!
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PostSubject: Re: Manda - diagnosed January 2010   Thu Apr 21, 2011 4:38 am

Diamox is rough, side effects wise. I have been taking it 3 times a day for almost 3 years now. Some people say the they will decrease over time although, this has not been the case. The worst for me is the nausea, every morning first thing like clock work. It's like being preggos for life. Alot of people have problems with the changing of pressures, standing up changing your positions. I wish I could give you some tips for that, I still struggle with picking my two year old up. Bless you and I hope you can get it controllable soon. My eyes do twitch for days sometimes, my opthamologist says it is okay, but it didn't used to before, so I blame IIH.
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PostSubject: Re: Manda - diagnosed January 2010   Thu Apr 21, 2011 6:47 pm

I know what you mean about the room spinning and vision problems when you get up and move your head. I have that too and I've got a shunt. I've learned over the years to not move so fast when it comes to moving my head, an to try and focus on an object because it helps with that spinning and over balancing feeling too. I'm so glad your vision is a lot better, and I hope it continues to improve.

I do get the eyetwitching alot, it's like someones pulling a thread connected to my eye, because it felt quite strong I was sure people could see it, but they can't. What I do is blink fast a few times with each eye, I have to say sometimes it works and sometimes it doesn't.

When you get up, get up in stages rather than straight up, and keep your head at the same angle so that when you stand up you aren't lifting it up.

I hope this helps hug
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