|Subject: Laura diagnosed 2010 Wed Aug 17, 2011 1:45 am|| |
My name is Laura Taylor and I am 19 years old and I live in Hillsboro, Oregon.
I was diagnosed with Idiopathic intracranial hypertension in Decemeber 2010.
My IIH didn't start out with the headaches and vision changes, I got those much later.
It started out with the stomach pains and so I thought it was a gastro problem so I had a colonoscopy done and an upper endoscopy nothing of course was wrong.
Then in the middle of October 2010 I started to headaches and they were annyoing but nothing I couldn't deal with, and of course I go the wooshing in my ear which the ear nose and throat doctor thought was TMJ. Then around Thanksgiving the headaches became too much for me to handle, so I went into the ER and what did I get?
You have a migraine and some vicodin.. Not helpful with a headache I found out. Makes mine worse. Anyway went home and to sleep. Next morning the headpain worse nothing is helping not warm or cold rags, so I just deal with it. About a week later my vision goes funny in mainly my left eye, and then I completley black out well my vision does. I go to the regular eye doctor and he checks my eyes with that annoying thing, and he had to get another doctor in to examine me cuz he wasn't sure what he was seeing. So he says in the backs of my eyes are swollen overly so. I get sent to the ER Dec 12th and they do a lumbar puncture. I was really scared because I have only heard about them on the show 'House' and it was not something I wanted to do. So I got the CT scan and nothing. Then came the fun part.. The opening pressure was 54, the highest that doctor had ever seen. Fun for me. Sent me home with diamox and topamax and oxycontin. Felt better the next day minus the constant having to go to the bathroom thanks to the diamox.
So for the next couple months I was doing ok. But then the headaches came back and the vision went blurry but not terrible, my vision field test was bad. So to the opthamologist I go. No swelling in my eyes, so they aren't really sure whats going on. To the neurologist who said I had Conversion Disorder.. Went to the best head pain doctor in the US and she said I had chronic migraines on top of the IIH. Yay for me! So I got a beta blocker and a muscle relaxer and a sleeping pill. And I would promise to loose weight, which is more of a struggle than I ever imagined.
I have found I am not the biggest fan of the headaches that you get and its kind of impossible to even get out of bed and move.
In the beginnging of July I got my fourth LP it was 34 or something around there. And now it's August, and I am still getting the realy bad headaches, still on the diamox, so my pressure should be done but considering my last LP I don't know. My vision is fuzzy and I have flashes. The wooshing in my ear is getting more annoying. I have an appointment with a doctor that is going to test me for a stent. If I am not eligible then I get a shunt. I just hope this helps.
I had never heard of this disease before in my life and apparently its very common.
I know things could've been much worse. But I am so blessed to have a family and friends that love me enough to put up with my during the not so pleasent times.
Thanks for listening.
|Subject: Re: Laura diagnosed 2010 Thu Aug 18, 2011 4:33 pm|| |
Hi Laura and
to the group..we're glad you found us. It does sound like you've had an interesting experience..I think you'll probably find a lot of those here. I'm glad your family is supportive and your doctor's are on top of everything..hang in there!!! I'm kinda of having a bad day, so apologize for the short replies. We are glad you found us and I think you'll find a lot of support among the members. You can always PM me or any of the Admin Team if you have any questions or concerns. Oh, I'd thought I'd also let you know..my family banned me from watching House long ago..lol..sometimes there's just too much information out there!
Take care and keep us posted!
|Subject: Re: Laura diagnosed 2010 Sat Aug 20, 2011 8:35 pm|| |
I am so glad there is finally a place where I can find other people who are going through the same thing. There are not many places that understand the things we go through on a daily basis. I am so sorry you are having a bad day. Yeah I can't seem to get myself to watch House much anymore..
|Subject: Re: Laura diagnosed 2010 Sun Aug 21, 2011 5:34 pm|| |
Hi Laura and welcome. If you have to have this weird, yucky illness, atleast you are living in the right place. The intracranial hypertension research foundation registry is a joint project of the foundation and Casey Eye Institute at the Oregon Health and Science University in Portland. That may be where you are already being seen, and if not, always a possibility. Best of luck with getting your symptoms under control.
|Subject: Re: Laura diagnosed 2010 Mon Aug 22, 2011 12:47 am|| |
Hi Laura and a very warm welcome to the group.
I know it is hard at the beginning, especially when it's something you haven't heard of and then told it's rare and incurable. It's great that you have a good support system with your family, and they too will have to get to know IIH just as much as you, so they can support and understand. They could even join this group too.
I hope that all the information and guide sheets we provide will help you, and also give you some reassurance. We are always here so ask as many questions as you need to, and we and the other members will be more than happy to answer them. You can even start a journal in Members Journals
where you can put all your thoughts and feelings, all you have to do is apply to join the Members Journals group and then once activated you can go to the members journal forum
, click on locked
and start your journal. IT's locked for confidentiality so that it wont be viewable online.
You can also vent and share feelings with other members in the Group Huddle Forum
. This is a place where we focus on you and help you towards a more productive and positive life with IIH.
We're so glad you're here
|Subject: Re: Laura diagnosed 2010 Mon Aug 22, 2011 1:22 am|| |
Thank you all so much for the kindness. I think this is the first time I have encountered people who are so nice and welcoming, besides my family and friends. To Wylee yes I am lucky that is were I am being seen at OHSU and I have an upcoming surgery well procedure I should say, its the testing to see if I am good candidate for the stent, and its being done there if the doctor ever decides to get back from vacation and look at my MRIs but who knows..
Thank you all again.
|Subject: Re: Laura diagnosed 2010 Wed Aug 24, 2011 7:54 pm|| |
:hello: Laura, and
to the group! I'm really glad you found us and I hope you find our support helpful on your medical journey. I'm sorry to hear your having such a rough time at the moment and I really hope you can find some relief soon.
I hope you keep us up to date on all that's happening with you in our Members Journal Forum. xxx
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|Subject: Re: Laura diagnosed 2010 || |
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