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It’s a Miracle
Posted: 20 June 2015 05:07 PM   [ Ignore ]  
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  If you have been following this forum you may know the story of my daughters and myself.  This novel concerns Lovina.
About three weeks ago we gave her Diamox she had a full recovery but due to Doctors and other reasons had to stop the Diamox after 3 days.  After 5 days her strange seizures came back { couldn’t speak , acted like a 3 year old , could converse through writing but sounded like a different person }.  Before these seizures she had anxiety brain fog pots and 100’s of other symptoms. 
  When she presented with a seizure we rushed her to emergency.  Just like our GP and specialist Doctor The Emergency Doctors were perplexed.  They actually researched on the net.  They couldn’t find anything similar at all.  I told you my daughter was special.  I told then of our success with Diamox and Brain pressure. They booked MRIs and EEGs aand booked us into a Neurologist {which could take up to a year to see them}. 
  The next days the seizures started again so my wife took her to hospital again But she didn’t present {the seizures stopped before she saw a Doctor}.  Then all this clear fluid came out of her nose.  That night she felt better and did some school work , first time for a year and a half.
  The next night we went out for dinner.  At the end of Dinner she got up and said she would meet us at the car after going for a walk by herself.  A walk by herself ?  We saw one of her friends in the carpark and they said Lovina walked passed them without saying hello.
  When she got in the car we started to chat.  Like when she took the Diamox Lovina was in a time warp.  She had lost more a year and a half.  She thought it was Dec 2013.  I can tell you she was not very pleased when she found who Australia’s Prime minister was.  The reason why she didn’t say hello to her friend is because she didn’t know her in 2013.  She was our incredibly bright and fun girl again.
Does anybody know of this happening before without Diamox.  We are hoping the pressure won’t build up again.
  I took Diamox without any Florinef in my system .  Wow I feel so much better I’ve even got arm muscles for the first time in my life.
  Well just one daughter to go.  Thanks for listening.

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Posted: 21 June 2015 04:46 PM   [ Ignore ]   [ # 1 ]  
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It only lasted one day.  Now she is in a cycle. She will wake up normal fade into anxiety girl about lunch.  Have a seizure around 3pm . Then take about an hour to return to normal daughter for the rest of the day.

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Posted: 26 June 2015 11:56 AM   [ Ignore ]   [ # 2 ]  
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Hi Trevor, It is sort of hard to follow all of the details here, but I just wanted to mention that CSF is constantly being produced (and drained) in all of us. Thus, if her pressure is building up, it takes more than a one-time dose of pressure-lowering medication to remain with lower ICP. Also, I hope her doctors can check the fluid coming out of her nose for CSF (there are a few ways to do so, but a Beta-transferrin test is the most accurate). It sounds like her neuros are checking her out closely, right? They will be able to determine if there is another cause for seizures beyond high ICP. FYI—have I seen pressure high enough to cause seizures? Absolutely. Is it the only cause? That’s the question her doctors can help with. THEN, it’s a matter of figuring out the best way to keep her pressure at an acceptable level, while someone tries to figure out why it is high (what is the underlying problem?). For many of us, these spikes in ICP can be temporary, and we can avoid brain shunts with proper evaluation/treatment. Please keep us posted! wink

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 29 July 2015 09:50 AM   [ Ignore ]   [ # 3 ]  
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Thanks Diana,
        Where we live is very isolated.  It takes a year wait to see a neuro.  In fact just finding someone to prescribe Diamox was a huge effort.  She is on Diamox now just started but we definitely don’t have all the extra support.  She ended up having three different personalities.  Hopefully every thing will be okay

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