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 Hi, have had had IH for over a year! - diagnosed 2009/10

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lillybug0324
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PostSubject: Hi, have had had IH for over a year! - diagnosed 2009/10   Fri Apr 01, 2011 9:55 pm

Hi I was diagonosed with IH about a year and half ago. I had a headache that would just not go away. I thought at first that it was a migraine. But after having it for about 2 weeks and my eyes felt like they were going to jump out of there sockets I kind of had a feeling something else was going on. I was also having that ringing ocean like sound in my ears as well. I had no idea what it was I had never even heard of intracranial hypertension until I was diagonsed with it. My husband took me to the ER where they gave me a bunch of migraine meds because they thought it was a migraine too. I was seen at the ER 6 times in 2010, thank god we have good insurance. But one of the doctors there suggested that they do an lumbar punch, I was not excited about the idea, but they did it anyway and I was so thankful that they did, my opening pressure was 2700, I was then referred to a neurologist a great one. He put me on diamox and percocet, migraine meds, predisone you name it I swear in the last year I have been on it. Nothing was working. I was talking 2000 mg of diamox a day and the pain behind my eyes kept getting worse and worse and worse. I was seen by an opthamologist and they said that my eyes looked great. One of them said I don't even think that you have IH. I said too him well my head it telling me otherwise and I never went and saw him again. One day in June 2010 I work up and my left eye was bothering me, it looked like I was looking through a screen like you would look like through a sliding glass door. I called my neurologist who admitted me into the hospital. They ran test my pressure wasn't up anymore than what it normally was, he then referred me to a neurosurgeon, who talked about shunt placement. In August 2010 I had my lumbar shunt placed. It worked wonderfully I felt normal again, I hardly had any headaches. Until about 2 weeks ago I was laying in bed one night and if felt like I had hit the top of my head but I hadn't. I called my neurosurgeon and he adjusted my shunt, but I am still having the headaches not sure where we are going to go from here. That is my story. Not as bad as some, but my heart goes out to everyone that has to live with this nightmare of headaches everyday! Smile
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Heidi
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PostSubject: Re: Hi, have had had IH for over a year! - diagnosed 2009/10   Fri Apr 01, 2011 10:16 pm

Hi lillybug and a warm welcome to the group. You've certainly had a tough time and it is a shame that your shunt failed, but I myself had an LP shunt at first, and for 5 years my symptoms were under control, and the only down side to it was the damge it did to the nerves in my back. However, towards the end of having it, I did start having headaches again, and as I had a different surgeon this time, he explained that LP shunts are known for over drainage, and thought that was why my headaches had returned to I was revised to a VP shunt.

When you next see him, maybe that is something you could discuss witth him, and ask him if there is a chance that your shunt is over draining, and could that be why you are still having headaches? It could be that the setting isn't right for "you", but it doesn't hurt to explore the possibility of over draining.
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lillybug0324
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PostSubject: Re: Hi, have had had IH for over a year! - diagnosed 2009/10   Sat Apr 02, 2011 4:18 pm

Heidi, oh it is so wonderful to talk too someone that has the same condition as me. My shunt is set at the lowest setting, I am scared about the other form of shunt, since you had one what is the procedure like? Thanks so much for you time take care! Smile
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PostSubject: Re: Hi, have had had IH for over a year! - diagnosed 2009/10   Sat Apr 02, 2011 7:44 pm

I have done really well with the VP shunt, and the surgery is not as bad as you think, I was only in hospital for 3 days when I had it done, and then I was a lot more functional at home than I was when I had the LP shunt done.

Here is the link to the post about how vp shunt surgery is performed, which is in our surgery section. I hope it helps explain how it's done, and believe me it isn't as bad as it sounds.how the vp shunt surgery is performed

Feel free to ask me as many questions about it as you like. As you can by me running this group and being a part of the IH Brain Pain Team, having the vp shunt has allowed me to be able to do lots of things, because it has kept my IIH under control. hug
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