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 Amber Diagnosed Oct.11 2011

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Amberly
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PostSubject: Amber Diagnosed Oct.11 2011   Wed Oct 12, 2011 6:09 pm

My name is Amber.I am 31 and married with two kids. I started having Occular Migraines and Migraines last year. We are not sure if this is related or not. A few weeks ago my granddaughter was sent to a local hospital to remove a tumor.The day we found out about this my left eye went black and it quickly recovered. I just thought it was my occular migraines getting worse. The visiual disturbances continued for several days. I was walking into the hospital after my granddaughters surgery and my neck tightened up and my ears started making this loud whooshing whaaa noise. Then as I entered the building the walls looked like they were bending.I thought I was going to have to admit myself to the hospital. Once I sat down for about an hour it all calmed down. So, I thought I must be getting a migraine. As we left the building by the time I made it to the car it was doing it again. Neck tight,loud noise in ears, eyes going crazy and head feeling like it will explode. This happened everytime I got up and moved around after this.The next day I went to my doc who said it is just my migraine. I kept insisting that it just did not feel like a regular migraine because it only did it when I moved around alot.The day after that I went to the hospital and they did a ct scan which showed nothing not even sinusitius.They gave me a few shots and said if not better in a few days go see a neurologist.Well two days after that was a friday and I had to go to work. I work in a movie,music,book store. On friday nights it gets really loud.As soon as I walked in there people talking,fan blowing,music,it was all to much and I had to leave.By the time I made it home I was in what I thought was full blown migraine. This lasted for three days and I was miserable nothing would even touch the pain.By monday I was completely drained and could hardly talk. My ears still had that horrible noise in them. We finally made some appointments with neurologist who then sent me to an ophthamologist.The eye doc said I had papillaedema behind both eyes.I then had an MRI and was called the next day to come back to have a spinal tap done. My opening pressure was 46.They sent me home with diamox and I had to quit taking by the second day because the numb and tingling side effects where so bad. After talking to my Neurologist we are going to try and build me up on the meds and hopefully that way I can take it.I forgot to mention that I also now have blind spots in both eyes in the peripheral vision. So far it has not come back. Yes, I am overweight so now I have to really try to lose weight. I feel better now that I know what this is but I am still just wondering what is next. I guess the only thing you can and should do is just live for the day.I was so happy to find this site. It really helps to read other peoples experiences with this.I don't know anyone who has this or has even heard of it. Thanks for being here! thank you
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PostSubject: Re: Amber Diagnosed Oct.11 2011   Tue Oct 18, 2011 9:21 pm

Hi Amber and welcome to the group!!! I'm always sorry to hear that people have struggled so severely, but I think you'll find a lot of similar stories here. I originally just had the issues with my vision, so I completely understand. I had completely lost peripheral vision in my left eye and had all kinds of black spots and floaters throughout my visual field..it was horrible! The good news is I regained all my vision once the IIH was treated. I didn't tolerate Diamox or other meds well at all, so ended up with a LP shunt. My vision and whooshing noises have flared up a couple times in the past decade, but I needed a revision both times. They were minor surgeries, so MUCH better than dealing with the symptoms of IIH or side effects of meds. I hope that building up the Diamox gives you some relief. I'm also overweight, but know others that gained weight after diagnoses. It's always healthier to have a healthy weight, but it doesn't necessarily make any difference with IIH..some have worse pain, some get better, and others don't seem to have any affect at all. One thing you'll learn with IIH is everyone and every flare up is different. You'll learn the signs, and hopefully some tricks for relieving pain. There's also good information on how to modify things to make them more manageable.

While you're waiting for the Diamox to kick in, you can try a couple simple things to take the edge off. I use eye pillows to relieve some of the pressure on my eyes. I also like heat on my eyes, back of my head, neck, and spine. Other people seem to find more relief with cold. I have a 'sweet spot' when IIH is flaring up..I lay on my side somewhere between 45-60 degree angle. You may have to play a little w/ the angle and remember to support your side with pillows. You may find more useful information in the Alternative Therapy section..hope you find something that helps!

Take care,
Julie
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Amberly
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PostSubject: Re: Amber Diagnosed Oct.11 2011   Wed Oct 19, 2011 4:08 am

Thanks Julie! I started having dark spots come and go in central vision and had a floater show up a few days ago. It went away after about 2 days.I still have a sharp pain through my head when I first stand up and when I lie down at night. Thanks for your suggestions I will try them. I am still trying to figure out what is from the IIH and what is the Diamox. I hope that you continue to feel better with your situation!
Thanks!!!!

Amber
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PostSubject: Re: Amber Diagnosed Oct.11 2011   Wed Oct 19, 2011 2:51 pm

A very warm welcome Amberly! hug You must have been so frustrated and worried, and it always pains me that our members have to go through such a touch time before they fianlly get somewhere with a diagnosis and the right treatment. We can all empathise with how you feel and the symptoms you have, and many of us have found ourselves overweight due to the illness rather than the other way around.

Hopefully with the right meds your vision has a chance to return to normal in time, so don't give up hope just yet. If however, it remains the same, don't let it knock your confidence or prevent you from enjoying life. I myself have had no peripheral vision, floaters and no depth perception for nearly 11 years now, and although registered partially sighted, I have managed to adapt very well to having tunnel vision.

I can only agree with the advice Julie has suggested, as I do the same things. I'm sure as time goes on you will pick up other helpful suggestions from other members, and even have some of your own. We have lots of booklets that you may find helpful to read, and you can download and print them all off too.

You're not alone and we are all here to support you and help you when you need it, and you can even have a rant in the group huddle section which is always very helpful as it lets you get things off your chest. We're very glad you're here with us hug

Heidi for you
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PostSubject: Re: Amber Diagnosed Oct.11 2011   Fri Oct 21, 2011 6:25 pm

Thanks Amber!

I know it's difficult to differentiate between symptoms of IIH and side effects of meds, but the doctor should be able to help you sort it out. You may want to keep a journal or there is a symptom log in the Useful Guides and Printouts section. It really does help to track your symptoms and pain levels.

Getting up is difficult for me too and I found I do better if I try it in phases. If laying down, I go up on an elbow for a few minutes, then up to a hand. I go to sitting position from there, and then stand up. I can't lay on my back, bend over, or lean my head back either..it really just takes some time to figure out what will cause you discomfort and how to adjust..hang in there!!!

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Amberly
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PostSubject: Re: Amber Diagnosed Oct.11 2011   Mon Oct 24, 2011 9:29 pm

Thanks Ladies for being here and for the advice!! Smile

I went back to work this past weekend and found myself getting really tired earlier than I use to.I am sure though that I will just keep adjusting to this until it is under more control.
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