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 Marissa - Diagnosed October 2011

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Kaystrel
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PostSubject: Marissa - Diagnosed October 2011   Mon Nov 14, 2011 5:18 am

Hello everyone.

I'm Marissa. I'm a deaf 29 year old mom of 2 kids and am engaged to a wonderful guy.

I was recently diagnosed with having IIH last month in October.

October 1st, I was feeling fine. Worked all day as the Volunteer Coordinator for a Deaf Awareness Day event. Sometime during that day, I felt dizzy for a moment, but it went away. Felt dizzy again later that night on the way home (I was working for over 12 hours straight... 7am til 9:30pm!!!). The next day I woke up with severe nausea, vomiting, diarrhea, and a LOT of dizziness. I ended up going to the ER, and they said it's because I was very dehydrated. I remembered that I had forgotten to drink water ALL DAY the previous day! Gave me two IV bags, sent me home with anti-nausea meds and instructed me to drink a lot of water. Two days later, I was admitted back to the ER with a very weird feeling in my head, like I KNEW something was wrong, and felt very wrong. I was seriously freaking out. The ER dr figured it was just sinusitis, and sent me home with two weeks of antibiotics.

2 weeks later: I was feeling dizzy, lightheaded, and weird still. In 2 weeks' time, I also developed vision loss problems, and just didn't feel right. I went to see my ENT dr because of the sinusitis, and she had a feeling something was up and strongly recommended that I go see an ophthalmologist. I went to see one later that week. After a series of testing, he suspected something was pressing my optic nerves, and referred me to an ophthalmologist that deals with eye disease and surgery. He confirmed it after an ink dye test, and referred me to the neurologist a floor above him.

Neurologist diagnosed me with IIH. Ever since then, I have been in deep depression and I've developed a lot of anxiety. After reading article after article after website after website, I've gotten even more scared about what I'm dealing with. I'm scared of losing my eyesight because I'm completely deaf and I rely on my eyesight. I can't imagine not being able to see my two beautiful children again.

Oh and here's the lovely news: I'm allergic to Acetazolamid. So I'm at a loss here with treatment as far as medication goes. I was on it for 3 days and I stopped because my neck was starting to get too stiff, and then a couple days later I developed allergy rash all over. Neurologist thinks it was from the medication leaving my body, and didn't want me to resume Acetazolamid. BUMMER!!!

Also: Im supposed to do a spinal tap soon... and I've been waiting to hear from the hospital about when I can do it.. it's been a bit over a week now! **sigh**

I've pretty much become someone else now. I'm too anxious to even do anything. I can't go to the store without feeling all weird, and then sit down and feel pressure bearing down on my head. I get anxiety attacks a lot nowadays. I'm thinking I need to see a psychotherapist and see what they can recommend as far as the anxiety.

I've been reading the forum here every once in a while looking for answers. I know that I'm not alone, that there's others out there with IIH.... but I have a feeling I'm the only deaf person with IIH and dealing with possibly losing my eyesight. That does not settle too well with me.
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PostSubject: Re: Marissa - Diagnosed October 2011   Mon Nov 14, 2011 3:16 pm

Hi Marissa and a huge warm welcome to the group hug. You have been through quite a lot in a short space of time and I know it has been very frustrating and frightening for you. Being deaf and being told you have a rare condition that is a threat to your sight must be an immense and stressful place to be in, especially as sight is more importantto you than anyone else because you rely on it for communication as well as straight vision.

You're bound to be anxious and the feelings you have are all normal responses to what is happening to you.Being prescribed Acetazolomide would have given you some sort of relief and to find you're allergic to it will have added to your anxiousness and dealt you quite a blow. Has your Neurologist discussed alternative medication often used to treat IIH? There are others that work just as effectively so maybe you could ask him about them and see if he thinks they would be suitable.

Don't give up and think there is no hope for you, because there is, your Neurologist just needs to find a treatment plan right for you, whether it be medication or a surgical option. If you feel that your panic attacks and anxiety or at a point where you need help than you are right to think of seeing someone who would help you, who may suggest ways of coping with it and/or prescribe an antidepressant. You will find that many of us with IIH are on some kind of antidepressant because of panic attacks, anxiety and depression, so you aren't alone and it isn't a weakness of character to have them or these feelings. It's just human nature.

We have lots of booklets that you may find helpful done by ourselves and our Partner Organisation the Brain and Spine Foundation. They might help both you and your husband to deal with whatever comes up, and we include useful questions that you can ask your Doctor, and Neurosurgeon.

Most of all, even though you are deaf, and maybe the only one within this group who is, we are all here for you, as you are part of the IIH community now, no matter whether you have an extra disability or not. You aren't alone and we will support both you and your husband in any way we can.

Heidi hug
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Wylee
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PostSubject: Re: Marissa - Diagnosed October 2011   Tue Nov 15, 2011 3:44 am

Hi Marissa and welcome to you.
Please do not put added stress on yourself. as Heidi said, there are other medications that you may be able to try to help lower your CSF pressure, I went through quite a few myself, trying to find one that woulkd keep my pressure down. I ended up having a lp shunt installed. That was two weeks ago. So far, so good.
So there are steps that can be taken to keep your sight intact. Hang in there. And know we are here to help you.
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BananasMom
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PostSubject: Re: Marissa - Diagnosed October 2011   Thu Nov 17, 2011 9:40 pm

Hi Marissa! Welcome to the group! Very Happy

I can only imagine how scary and frustrating it must be for you having to deal with this diagnosis as a deaf person. But please know this does not mean you have to lose your eyesight ... fortunately we have medication and surgical options that can save our sight in most cases. My opthomologist tells me he is currently treating 6 patients with IIH, and all of us have reached some level of management of our condition and all are maintaining our eyesight. Hopefully this gives you some hope.

What a bummer that you were allergic to the Diamox, but as Heidi said there are other drugs that can be used. Has your doctor discussed trying any of them with you?

Like yours, mine was a situation where the IIH seemed to "come out of nowhere" -- not there one day, and there the next -- so I can definitely relate to all the feelings of anxiety and depression you are having right now, and the feeling that everything has changed. It is a huge adjustment to a "new normal" and I've been there. You will get through this. And we're all here to help! *big hugs*
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