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acting like a 5yr old
Posted: 02 June 2015 04:31 PM   [ Ignore ]  
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Hello again. I did my first post 3 weeks ago and told you my family’s history.
Since then my 16 year old has developed strange symptoms.  She was diagnosed with pots 5 months ago symptoms: severe anxiety, weight loss of 17 kilos, loss of period 4mnths, headaches every day, constipation, severe brain fog and lots of other things. She is taking fludocortison and beta blockers. The last 3 weeks taking Sudafed Phenylephrine.  Her anxiety was getting a lot less and it was looking good.
In the last week the anxiety has been replaced with her acting like a five year old when under stress.  Yesterday she acted that way all day.  Repeated words over and over again and made weird sounds. It was like talking to little child.  When she comes out of this phase she can’t remember any of it.
  I had just received some Diamox and gave her 250mg{they had the initials I P in front } .
By 7:30 she had completely returned to her old self she didn’t even have anxiety. She was talking about going to school, her friends and playing sport. It was as if she had been frozen for 2 years.
  This normal state only lasted for 2 hours then she complained of increased pressure at the front of her head and a sore stomach.  Within 5 minutes she was back to acting like a 5 year old.  If anybody has seen anything like this before or about the reactions to Diamox and how we could procede It would be fantastic.  I am afraid we might lose her altogether.  Our Doctors have no knowledge of these methods.

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Posted: 04 June 2015 04:32 PM   [ Ignore ]   [ # 1 ]  
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Hi Trevor, High intracranial pressure can cause some weird symptoms that appear to be psychiatric, but if relieved by Diamox, you have to at least CONSIDER that they may be the direct result of the pressure. If she is also on fludrocortisone, you may want to consider tapering/discontinuing it (as her doctor, if possible). It may be defeating the purpose. As you may have read in my book, taking Florinef is what cinched my diagnosis of high ICP. My pressure went through the roof on it. I wonder if it would allow her to get the full benefit from Diamox? Of course, her doctors will want to do a brain MRI, rule out space-occupying lesions, etc, but it sounds like you may be getting to the bottom of much of this yourself! Keep us posted? Gentle hugs…

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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: 07 June 2015 05:29 AM   [ Ignore ]   [ # 2 ]  
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Dear Dr Diana,
          My Doctors were not happy that I gave my daughter Diamox.  So they sent us to the emergency dept of the local hospital.  The supervising doctor gave us some options ,  .  He wasn’t sure why we were there.  We had a problem and we had a medicine that was fixing it and sent us home.
  My daughter said she was better and didn’t want any medicine and went to bed.
The next morning when she woke feeling like she had been a sleep for a year and a half.  The memories of the last years were very foggy.  She is going to go to school on Tuesday .  The first time in a year and three months.

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Posted: 07 June 2015 09:43 AM   [ Ignore ]   [ # 3 ]  
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Hi Trevor, Do I have this right? Did your daughter discontinue the Florinef, but stay on Diamox? Was this shift the cause of her improvement? If I got that right, then AWESOME!!! I am so excited to hear that she is headed back to school. For my son, Diamox PLUS antihistamines was the combination that got him back to school part time. I wonder if your daughter also has a problem with histamine, and may benefit from antihistamines also? Tremendous news, Trevor! 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: 09 June 2015 08:12 PM   [ Ignore ]   [ # 4 ]  
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Could it be some sort of seizure ?

Have you tried her on a good multi-vitamin and mineral supplement ?

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Posted: 10 June 2015 04:54 PM   [ Ignore ]   [ # 5 ]  
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Thanks Barbara,
          You are spot on.  The emergency Dr said said it was presenting like a seizure. The Diamox worked extremely well at stopping it.  When she was on Diamox it was like she had come out of a comma. Could it be possible that the last year and a half was like a very long seizure.  After taking Diamox did anybody have the same experience of waking up and not remembering much since they got sick?  My child has no clear memories of being sick [1 1/2 years]  It is like she has that lost period of time.

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Posted: 10 June 2015 08:58 PM   [ Ignore ]   [ # 6 ]  
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Trouble is the brain finds it very difficult to work when it’s physically ‘under pressure’. No matter how hard you try, it just doesn’t happen and the people who knew you when you were ‘whole’ so to speak just don’t get it. For instance, they don’t see how you can put bacon under the grill then immediately forget that you’ve done it, or that you just can’t sort letters in a file into chronological order, or keep track of the conversation while there’s any sort of other noise going on. It’s so very limiting. In fact, it’s not until you reach a certain level of improvement, that you realise just how non-functioning, in comparison to ‘normal’, you’ve actually been.

In a way, it’s a blessing your daughter has little recollection of it. Let’s hope it’s onwards and upwards from now on.

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Posted: 11 June 2015 07:20 AM   [ Ignore ]   [ # 7 ]  
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Thanks Barbara,
      We just need an understanding Doctor.  I know what you are talking about every day I get into my car with the wrong car keys. It’s like my daily routine.

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