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 Laurie - diagnosed Sept 2011

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IIHQuilter
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PostSubject: Laurie - diagnosed Sept 2011   Sat Nov 12, 2011 10:38 pm

Me with IIH - Well after at least a year of daily headaches, some worse than others, all my time gone at work, a boss that just wanted to punish me for taking time off for headaches, migraine meds that only worked occassionally, my doctor sent me to a second neuorlogist. After describing the headaches to him and a real brief exam, he immediately suggested a lumbar puncture to look for IIH. I just said if it helps with the headaches he could do what he wanted.

The day of the LP was a good headache day the headache was very mild and on that day the pressure was 28. So I have no idea what the pressure is on a normal day. The neurologist drained off some fluid and sent it all over for testing. Guess all the testing was negative as neuro never said another word about it.

Before my follow-up from the LP, I had 2 days of unbearable headaches with vomiting and bloodpressure of up to 195/110, I had always had low blood pressure. My primary sent me to ER first day, to only waite in waiing room to get knocked out with drugs and sent home and then to wake up 4 hours later to a worse headache. At 6 am I called my father, who got neurologist and primary to talk and they sent me to ER, but contacted ER to let them know I was coming and I got a better neuro workup. Got a big dose of a steriod and a script for a steriod pack - oh that gave me 3 days of no headaches (heaven), but I got rebound headaches when pack got down to 3 pills a day. Also was given a pain med that killed my stomach so only took it once. They also then started my on Diamox, I was already taking topamax. I was glad a plan was starting and something more was done.

Followed up twice so far with neuro since, Diamox and topamx have been doubled to 250 mg and 100 mg respectively, still have headaches daily, the real bad ones so far have been fewer between, but still pop up. The neuro was NOT communicating with my primary, would not fill out ANY paperwork for my work - not even FMLA, and was not communicating well with me on what to expect with side affects from the diamox. So, on last visit to my primary, I got a referal to a new neurologist. Actually have appointment with him the day before I was to follow up with the other neuro. I hope this one goes better and he is willing to take care of me as a whole person.

Me as a person - I am 45 years young (well I try). I have 2 older teens. I am just over a year divorced - the divorce was a 3 year miserable time. I am now a single mom to the teens. I love to quilt and sew (my therapy as IIH allows). I head up a quilting group at church Monday nights. Enjoy cooking for those that like eating - fussy eaters need to go elsewhere, they just are not so fun to cook for - lol. Before the daily headaches, I was an EMT on the local volunteer ambulance and enjoyed helping my hurt or sick neighbors. I'm easy-going. We have two dogs and a cat - they give me lots of cuddles. I live near my parents and 2 of my 4 sisters, the help they give is God-sent.
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Wylee
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PostSubject: Re: Laurie - diagnosed Sept 2011   Sun Nov 13, 2011 6:20 am

Hi Laurie, and welcome!
Sounds like you have had quite an experience so far. I hope things will start going better for you now that you are on meds and you are seeing another neurologist. Often, that is what is necessary.
The Diamox as well as the Topamax should help with your symptoms. Do not be surprised if you will need to increase your doseage as you are on relatively low doses. The lower the better of course, but do read up on the side effects, especially of the Diamox. They can be a bit unsettling. I am on Diamox, have been for over a year, and no longer even notice any of the side effects.
Looking forward to chatting with you.
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Laurie - diagnosed Sept 2011

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