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Yellow submarine
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PostSubject: need some help   Wed Jul 24, 2013 10:22 am

I am here again...

I have IIH, and the treatment is Diamox 250, 3 tablets a day + potassium.

I am feeling better : even if when I wake up, the pain is about 8/10, after a few hours, it is much better.
I have side effects of the treatment : paresthesias hands and mouth.

Today is a day "without"... I feel pain, as usual, but it is as if there was a vacuum cleaner emptied my skull... I have moments with blackouts in the eyes, not very long (2-3 seconds maximum), and I feel as if in some cotton.

I know that the last exams were very good, especially no really papilledema.
I feel empty, without any strength.

Obviously, my doc (GP) doesn't work today.

What would you do, if you were me ?
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PostSubject: Re: need some help   Wed Jul 24, 2013 5:12 pm

I finally managed to see a doc tonight. He gave me some medications. And told me to go to the hospital tomorrow...
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PostSubject: Re: need some help   Wed Jul 24, 2013 7:16 pm

I am so sorry you're having a terrible time of it, I do hope that seeing your doctor tomorrow will make a difference, and he will be able to see if it is your pressure rising. PLease let us know how you get on, and we will be thinking of you. Fingers crossed that you feel much better soon. hug
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PostSubject: Re: need some help   Fri Jul 26, 2013 11:50 pm

Hello !

I am back here, last tima, my doc gave me medications  a bit strong, that made me sleep 5 hours in the night.
I talked with my husband on the early morning, and he decided to drive me to the hospital. I just wanted to be really relieved... I had a discussion with the doc of the ER, who called "the doc who follows me" (I don't know who he is... because I only see students, the most of time, ophtalmologists, the last time I saw a neurologist senior was in 2008, but that is in the right service). They are not worried, because the last exams were good.
The doc of the ER put me on a drip. And a neurologist came and see me.
The neurologist told me that they don't want to keep me, and I answered that I just wanted a treatment for the pain which was stronger since a few days, and that I never asked to stay at the hospital,  that I went to the ER because my doc told me to do that, to have intravenous treatment, because the meds he gave me were only partially effective,... The neurologist recommanded me to discuss with my neurologist a LP, if the pain is still strong, because, even if it is not severe because the eyes are quite OK, I feel pain, and have to discuss about that.
I explained that I feel as if my head was going to explode... and his answer was that there is no good treatment for that pain... 
The medication they gave me made the things go better. The night, I took another tablet, and one again this morning. I feel much better. But I am afraid that this pain comes back. And I live in slow motion... it's hard at work.

I hope to avoid LP. I had a few the first 2 years (5 or 6)...
In fact, the last one I had was very hard. And I think I had it too early, and had a post LP syndrom...
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PostSubject: Re: need some help   Sat Jul 27, 2013 9:39 pm

Oh my.  You really, really need a better support system.
The thing with IIH, is that it can cause your eyesight to deteriorate very quickly.  A good report last week really doesn't mean much.  I highly recommend that you start keeping a symptom and medication log.  Keep track of what you feel, what meds you are taking (even what time it was that you took it), what the weather is, what activities you are doing.  The reasons for such a log are many, but especially because it shows the docs just how serious you are about getting this resolved.
Write down the name of everyone you have seen, everyone you have spoken to, and especially what has been tried.  And the next time they schedule a lp, ask them, no, beg them to have it done under guided X-ray (fluoroscope).  Makes a huge difference.  
Hope you get to feeling better real soon.
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Yellow submarine
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PostSubject: Re: need some help   Sat Jul 27, 2013 10:17 pm

Thank you Wylee !

I note every day, as you told me.
I am feeling better... and hope it will continue the same way
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medmisfit
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PostSubject: Re: need some help   Tue Jul 30, 2013 3:55 pm

I'm glad you're feeling better!!! Hopefully the log will give doctors enough information to take the next step in treatment. Good luck, and definitely keep us posted!
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need some help

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