Idiopathic Intracranial Hypertension Weightloss and Medication

I was diagnosed with IIH/PTC in November and put on Topamax and told to lose weight.  I'm 5'2" and weighed almost 200lbs.  Overweight and I knew it.  
My neuro and I have communication problems (he wants direct, quick answers, whereas I want to explain things and be explained to) and I want to know how much weight I should lose and how long I should be expecting to be on Topamax.   I'm down to under 180, I'm working hard, but should be working harder.  I feel like if I had a clear goal, it would be easier.  

Anyone know?  How long have any of you had IIH?  Have you been on meds for...years?  Months?  I can't really afford the copay for years...  

[crystalhanzelka]

hello.  I have PTC.  I have been diagnosed for close to a year now.  I have been on Diamox since diagnosis.  What was your opening pressure?  Some do have this condition forever while for others it will go away.  I am hoping I am the one it goes away. ;)  
Here is a helpful link...
http://www.ihrfoundation.org/
Hope this helps.

[IIH50311]

Thanks crystal.  

I'm not sure what the pressure was.  I'm sure it's in the medical notes, but I was so upset that day, I was all alone at the doctor's and everything was going so fast, it was just a blur.  I latched on to him saying it was quite high and he was diagnosing it as IIH (high pressure, papilledema plus overweight and taking doxycycline)  and I didn't listen to the number.  

[TJRasta]

I don't remember where but I recall reading that as little as 10-12% weight loss can make a difference.  Unfortunately weight is not the only factor.  Both Crystal and I can atest to the fact that even people with normal weight get IIH.  Doxycycline sounds like an antibiotic.  Some antibiotic drugs have been known to cause IH.  The website Crystal mentioned talks about this.  They call it SIH.  

I also know what you mean about the Doctors.  I now go to my apointments with a list of questions to discuss and do my best to jot down notes of his responses.

[crystalhanzelka]

Hey man!  Have not heard from you in a while.  How are things?

It seems to occure more in overweight women, but slim people, men and children get it too.  It *****.  And at times can be scary.  I have a friend whose pressures get in the 80s.  Yes the 80's.  She has had 6 shunts and her body rejects all of them.  We will not discuss the other things that have happend.... but it can be scary.

[TJRasta]

Hey woman!  I know it has been a while.  I thought I said something wrong......any who how are you?

You know how it goes.  Good days and bad days or bad days and worse days.  Glad to hear someone else out there spreading the word about the ihrfoundation.  

I do have a question for you. Maybe I should start a new thread but maybe IIH50311can learn from this too.

How much fluid do they take out at your taps?  Do you find the taps therapeutic?  My last tap he took out 20 ml, I layed down for along time and I felt pretty good for about 4 weeks.  Now life *****. I can't even sleep my head hurts so much. I need to get back in for another tap even though it makes no sense that it could last that long.  I have read that pressure returns in hours, not days or weeks.  What do you think?

[crystalhanzelka]

No you did not say anything wrong... lol

As far as the taps.... here is an example.  I went for one and my opening pressure was like 32... and he took me down to 11.  So that would make 21 ml removed.  I felt dizzy for a moment.  My brain was like what the hell...I was so floating...lol.. anyway.

I have read that too about the pressure rising within hours.  I talked to a neurosurgeon and I think it rises gradually.  She told me I still need to be getting taps.  I know you do feel better for a while...as long as you dont have low pressure probs.  Some studies say that taps are unfavorable because the high pressure returns very quickly...but my doctors still insist on taps.  So that I am not sure about.  I have a friend who has had over 400 taps.... OUCH!  I do not want to go that route but her pressures are like 60-80 and sometimes not mesurable.  SHe has literally sprayed the neuro with spinal fluid.  I wish this illness would just go away.  It is miserable at times.  I have had good luck lately with headaches...they have not been so bad.  But these last few days my head feels heavy and headaches are coming back.  I notice that when it is clost to my period..this happens.  Glad you dont have to go through that...lol.

[TJRasta]

Yes I do have that going for me.  My sister gets migraines with her periods.  

I am a little confused on the numbers above. It would seem to me that there would not be such a direct relationship between volume removed and pressure after removing that amount.  My last tap was 28 and he removed 20 ml and this was my best tap ever.  Your numbers suggests my pressure would then have been only 8? That seems too low. Maybe he said he took me down to 20 but that seems odd too because that would still leave me at the top of the normal range.  My previous tap was 27 and he removed 13 ml and I did not get much relief.  I'll make sure and clearify at my next tap. BTW my neuro agrees with yours that taps are both diagnostic and therapeutic so I will continue to have them.  

You have mentioned your friend in the past....ugh....not looking forward to the next tap let alone number 400.

[IIH50311]

wow.  i would hate that-so many taps!  the one that i've had-the side effects were soooo bad!  my day-to-day headaches i can deal with (i hate it and i wish it would go away IMMENSELY), but the pain from that and the immobilization!  I laid in bed for a week!  doing nothing but drinking mountain dew because that's all they could tell me to do!  it was horrible.  i hated feeling like i could be up and moving around, but the minute i got up, uhhh, back down.  

[IIH50311]

yeah, Doxy is on that list of meds that they say are bad, in the family wiht the tetracyclines.  but the neuro said probably not the cause.  even still, i'm off them now.  

[Cath278]

Hi . Just thought I would give you my stats.Opening pressure in the high 40s. They took .off 35mls and relief lasts for 12 hrs. The body produces one pint of csf per day, waxing and waning as the day progesses. Im not too sure how much people with IIh produce in a day, or at what rate does it replenish itself? Im not sure I am making myself understood tonight! Bit of brain fog going on. Can anyone follow my thought? Cath278