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1. 

   kyliesue

   102 Points

   01/21/10

   i need some advice can u chat ? or call me @ 5127886437
   
   karli reagan

2. 

   tanya

   101 Points

   02/05/09

   That is what I was diag w/ I was on far greater mgs of topamax over 300mg diam 2000 and some times alittle more yes keep up w/ labs for what you said w/ the diamox. I never had side effects from any of the meds they just all stopped working. Accoring to this disease it should go away on its own from what I have resaerched and have been told by Neuros. Turned out after 4 years and tons of spinal taps that is not what I had. But sadley ( I do have some ext weight my self) If you look up all the info except for her age the disease hits women with weight but usually mid life I believe. I did lose weight and noithing helped so long end of the story I had to get a shunt to relieve the ICP. Its been a mth and thats is it. I had Lyme as a child (16+) hope you daughter has awesome friends that are willing to go the mile to let her know how special she is. I did thank goodness. I wish her and you noithing but the best sorry I couldn't help more.
   
   Tanya

3. 

   mdmomof7

   1 Points

   01/24/09

   Hi Heather,
   
   My 17 yo dd has been diagnosed with pseudo tumor. I've been reading the posts here and yours struck me. She has memory problems which they said will correct themselves when she's off diamox and topamax and her pressure returns to normal. She couldn't take the topamax any longer because of the side effects. So they are taking her off that and increasing her diamox to 1500mg daily from 1000 mg daily. They said to watch for electrolyte problems and kidney stones.
   
   I was wondering if you could share what your topamax side effects were and how low your low topamax dosage was. dd was up to 50 mg 2x daily and at 75 mg 2x daily really started to hate the side effects.
   
   Thanks so much! Oh, she's had this since mid November and her life has basically stopped and she's inexplicably gained 20lbs. which the neurologist told her she should lose by excercising and limiting her caloric intake. She can't excercise because it increases the pounding headaches and she's eating less than ever. Her fingers look like plump sausages now and she's begun to have diarrhea. It's crazy.
   
   Thanks for any info you might share.

   01/25/09

   Reply from habanno:

   Hi there!
   
   I'm sorry to hear your daughter has been diagnosed - particularly at such a young age. It does not seem fair that a time that should be so worry-free is filled with such struggle.
   
   I have been med-free for two or three years (I think it's going on three). While I certainly have residual deficits, my memory has slowly improved over time. I once had an amazing memory, but a few years ago I remember wondering if I'd be able to perform in my line of work as I wasn't retaining much info at all. I think things have improved both memory wise, and in my ability to compensate for deficits (written notes on everything, lol)!
   
   For the majority of time I was only on 50mgs of topamax daily (up to 100 for a short time, but didn't stay there long). I remember just feeling "stupid". Following a conversation was hard, problem solving was hard, everything was hard :(
   
   I can relate a bit to what your daughter is experiencing. I gained 120 pounds in the couple years following my diagnosis - 120 pds (that's a whole person)! Even though I've been in remission a few years, the weight is still a struggle (though one I'm successfully battling lately - 30 pounds lost since Sept). I gained the weight for a numer of reasons - I retained fluid like crazy, I could not tolerate physical activity at all, and many foods seemed to trigger symptoms (but sweet foods seemed to alleviate them). I also had trouble with my stomach - I think from the decrease in exercise and the change in diet.
   
   My thoughts are with you and your daughter. Even if she gets snappy at times (man I could be brutal when I was in pain) your support through this is going to mean the world to her :)
   
   Please feel free to write anytime!
   
   
   

4. 

   maggie mitzi

   103 Points

   12/15/08

   Hey Heather, I am excited. I just saw mystery diagnosis on discovery health. When will get some links to new info. I am ready already! lol xoxo
   
   Mary
   
   Original comment »

5. 

   maggie mitzi

   103 Points

   12/07/08

   Hi Heather!
   So glad we have a new home! Waiting to move in hehehe. Hope today is a good one xo
   
   Mary
   

   12/07/08

   Reply from habanno:

   Hi Mary!
   
   Can't wait until we get you all moved in : ) Should be soon!'
   
   Good to see you on here!
   

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