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 new perscription for topamax, has anyone else had success wih this?

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sherry52
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PostSubject: new perscription for topamax, has anyone else had success wih this?   Fri Nov 22, 2013 2:41 am

Hi, I am allergic to diamox, so have been on lasix with limited success, no real relief from headaches, my neuro added 50 mg of topamax a couple of weeks ago.  Night headaches are better, I can now sleep all night usually, but still have all day headaches, plus the side effect of feeling a bit stupid.  I substitute teach and was shocked to discover Ihad forgotten how to add fractions with unlike denominators for a minute or two!!!  Going in for a new lumbar puncture in a couple of weeks, not looking forward to that, but need to see if pressure is any better than it was a couple of years ago when I was 1st diagnosed.
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Wylee
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PostSubject: Re: new perscription for topamax, has anyone else had success wih this?   Fri Nov 22, 2013 4:00 am

Sherry, "dopamax" is frequently prescribed as a treatment for IIH, and with great success.  I hope that your body can adjust quickly so you can feel more "normal."
I hope they will do the lp under guided X-ray (fluoroscopy).  It is much less painful and quicker than doing it "blind."
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sherry52
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PostSubject: Re: new perscription for topamax, has anyone else had success wih this?   Fri Nov 22, 2013 4:48 am

Hi,

Yes this next tap is with fluoroscope, first one was in the drs office and was a nightmare!  I am glad others have taken topamax, I didn't see too many posts about it.  I am nervous about the possibility of losing hair, losing weight wouldn't be terrible!  I do notice my appetite is less, I make myself eat.  I have no desire for my occasional glass of wine either.  I have switched to hot chocolate!  I see you are my age, did you have drs having trouble believing your diagnosis?  My new neuro is really digging for a different answer to my symptoms.  I think the spinal tap results will clinch it for him though.  Thanks for listening!  Sherry
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Wylee
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PostSubject: Re: new perscription for topamax, has anyone else had success wih this?   Sat Nov 23, 2013 4:08 am

We certainly don't fit the "norm" that's for sure!  My IIH is a result of having had Shingles, in my ear.  It seems the zoster virus plugged up some of the holes in my head so like a thermostat that gets "stuck", my pressure rises to a higher level before it releases the waste fluid.  My pressures have been between 22 and 25, but my body seems to like between 9 and 11 better.  We think I may be the first person to receive a shunt due to the zoster virus.  It has been an improvement, just not quite there yet, so we are still trying different meds and adjusting my programmable valve to get me feeling better.  I have extreme disequilibrium and balance issues, as well as double vision (vertical, where most with IIH have horizontal).  
The topamax has been really beneficial to many, especially with the added boost to losing weight, so do try to stay with it.  Just write yourself notes (I have to do that with my cognitive issues) as helpers.
Testing the spinal fluid as well as getting that opening pressure will be helpful to your docs.  Just getting a diagnosis will help you feel better.  How well I know that one hug
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sherry52
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PostSubject: Re: new perscription for topamax, has anyone else had success wih this?   Sat Nov 23, 2013 4:35 am

Good evening!
 
I do have a diagnosis, but no one except my primary care doc and me seems to believe it.  He did the spinal tap 2 years ago.  The thing is he did it while I was sitting up, and bending forward, hugging a pillow, not an ideal position for measuring open pressure.  My nephew is a neurosurgeon and while he didn't say anything his facial expression made me go read up on positions for opening pressure readings.  Pressure readings are supposed to be done lying down for accuracy.   All my blood tests came back normal today, no lupus, no arthritis of the arteries, never heard of that one before.
Yours is an odd one!  I am glad you were able to get a good diagnosis.  Balance issues must be difficult!   I find the range of symptoms among us all interesting.  Everyone seems to have a variation on a theme.
 My dr. did mention getting a shunt if meds don't relieve pain and symptoms, that worries me too.  I see double diagonally and to the lower right sometimes, only with my right eye.  I also have a few letters turn random colors when I'm reading, mostly red, sometimes blue (my eye dr says there is no such thing) but I beg to differ.  It's been happening over a year now.  When my pressure is really high, I hear music that isn't there.  always having high pitched ringing in my right ear.  At least I get some sleep now with Topamax.  I can cope with being dumber. It is hunbling, and I see how it can make me a better person.  I do need to remember to write things down, and then remember where I put the list!  Good night and thanks for writing and "listening".  It is good to know there is someone else out there and I am not alone!  I have often felt that way.  My last neurologist just got bored with me and released me to my family dr who really knows nothing of IH, so I have been taking care of myself for quite awhile!
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