PrettyIll.com

 
   
 
palpilledema anyone? Also does anyones eye pressures test high first when they first get checked? then go down the longer they sit in the Dr Office?
Posted: 28 April 2012 01:16 AM   [ Ignore ]  
Newbie
Rank
Total Posts:  11
Joined  2012-04-25

TRying to understand this driscol theory. but my brain is to frazzled to compute! i dont remember seeing anyting. Just wondering if there is anyone else out there?

Profile
 
 
Posted: 28 April 2012 08:47 PM   [ Ignore ]   [ # 1 ]  
Administrator
Avatar
RankRankRankRank
Total Posts:  150
Joined  2011-06-18

Had to look up this. Interesting as it seems related to intercranial hypertension. If Dr. d has time she may chime in here since eyes are her specialty.

 Signature 

It’s good to be open minded, but not so open minded that your brain falls out of your head.

“Patients can have as many diseases as they damn well please”.

Profile
 
 
Posted: 28 April 2012 08:51 PM   [ Ignore ]   [ # 2 ]  
Newbie
Rank
Total Posts:  11
Joined  2012-04-25

oh it very much is related to it smile i have very high intercranial pressure. psuedotumor ceribri and minimil 3 to 4mm chiari. i have had i for almost 8 years. shunt placed in dec of 04 removed in Jan of 05 (meningitas twice. Was all thru the tubes of the shunt) my spinal tap pressures range between 40 to 50 usually. sometimes a bit lower. But i have also topped out.
I should also rephrase the question. does anyone come into the dr’s office with really high pressures. Then they go down by a couple numbers the longer they sit in the office?

Profile
 
 
Posted: 03 May 2012 11:21 AM   [ Ignore ]   [ # 3 ]  
Newbie
Rank
Total Posts:  1
Joined  2011-11-01

I have had papilledema since 2002.  But since my lumbar punctures have shown normal pressure, they don’t believe I have high intra-cranial pressure.  Thanks to the Driscoll Theory, I understand that the pressure may be mildly elevated, but not show up on lumbar puncture.  So I very likely would benefit from Diamox…once I find a doctor to prescribe it.  But currently, I can’t even get an rx for a pain medicine.

Profile
 
 
Posted: 03 May 2012 11:26 AM   [ Ignore ]   [ # 4 ]  
Newbie
Rank
Total Posts:  11
Joined  2012-04-25
Carolynjoy - 03 May 2012 11:21 AM

I have had papilledema since 2002.  But since my lumbar punctures have shown normal pressure, they don’t believe I have high intra-cranial pressure.  Thanks to the Driscoll Theory, I understand that the pressure may be mildly elevated, but not show up on lumbar puncture.  So I very likely would benefit from Diamox…once I find a doctor to prescribe it.  But currently, I can’t even get an rx for a pain medicine.

  Thats one thing i was very confused about. I always show very elevated pressures in my spinal taps. Have even tapped out before. So i guess i actually do have pseudotumor ceribri. I have not let them give me a spinal tap since last june though. Thats when i started suspected the chiari. They resubbmited the mri to be reread looking for chiari. And a 3 to4 mm was reported. My neuro optamolgist said thats from all the spinal taps they have give me.

Profile
 
 
Posted: 08 May 2012 05:21 PM   [ Ignore ]   [ # 5 ]  
Administrator
Avatar
RankRankRankRank
Total Posts:  1416
Joined  2011-04-19
Carolynjoy - 03 May 2012 11:21 AM

I have had papilledema since 2002.  But since my lumbar punctures have shown normal pressure, they don’t believe I have high intra-cranial pressure.  Thanks to the Driscoll Theory, I understand that the pressure may be mildly elevated, but not show up on lumbar puncture.  So I very likely would benefit from Diamox…once I find a doctor to prescribe it.  But currently, I can’t even get an rx for a pain medicine.

Hon, if you have papilledema (or “pseudo-tumor cerebri” as we call it), and the doctor DOESN’T prescribe Diamox, said doctor had better have a VERY GOOD explanation as to why the HECK you are not on that medication. And if they DO have a very good explanation (let’s just say a BAD allergy to sulpha meds, for example), they need to tell you what they are going to do to treat it. This is NOT something to ignore, Hon. Eye doctors usually treat pseudo-tumor cerebri with Diamox, and don’t even NEED an LP to do so. Heavens. My friend, if you need to see another eye doctor, PLEASE DO SO. K? Promise? Big hug, Diana

 Signature 

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

Profile
 
 
Posted: 08 May 2012 05:31 PM   [ Ignore ]   [ # 6 ]  
Administrator
Avatar
RankRankRankRank
Total Posts:  1416
Joined  2011-04-19
whatsreallygoingon - 03 May 2012 11:26 AM

  Thats one thing i was very confused about. I always show very elevated pressures in my spinal taps. Have even tapped out before. So i guess i actually do have pseudotumor ceribri. I have not let them give me a spinal tap since last june though. Thats when i started suspected the chiari. They resubbmited the mri to be reread looking for chiari. And a 3 to4 mm was reported. My neuro optamolgist said thats from all the spinal taps they have give me.

Hello, my friend. I am so happy to say that the book form of The Driscoll Theory should be available any day. I think your doctors may understand the external communicating hydrocephalus thing a bit better once they read it. I’d bet my right leg (my “good leg” ha) that you have EXTERNAL COMMUNICATING hydrocephalus contributing to your presentation of Chiari. Sure, numerous taps don’t help, but the Chiari should basically “pop back” unless it is fully “corked” after a tap—UNLESS the fluid in the subarachnoid space above the brain is pushing your brain down just a bit. Now, pseudotumor cerebri is high intracranial pressure that pushes on the optic nerve, causing a “pseudo-papilledema” appearance. The doctors see blurred optic nerve head margins. You can have high intracranial pressure without having pseudotumor (like me!). Can you talk your doctor into a trial of Diamox? I think it would be well worth your time. smile As far as your original question, yes, the pressure of your eyes (your intraocular pressure—not intracranial pressure) can be lower every time it is checked, especially if they are using an applanation tonometer (which they likely are). It pushes out just a little bit of fluid every time. But this reading is not related to the pressure inside your head. Cool? smile

 Signature 

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

Profile
 
 
Posted: 16 May 2012 02:40 AM   [ Ignore ]   [ # 7 ]  
Newbie
Rank
Total Posts:  11
Joined  2012-04-25
Dr. Diana - 08 May 2012 05:21 PM
Carolynjoy - 03 May 2012 11:21 AM

I have had papilledema since 2002.  But since my lumbar punctures have shown normal pressure, they don’t believe I have high intra-cranial pressure.  Thanks to the Driscoll Theory, I understand that the pressure may be mildly elevated, but not show up on lumbar puncture.  So I very likely would benefit from Diamox…once I find a doctor to prescribe it.  But currently, I can’t even get an rx for a pain medicine.

Hon, if you have papilledema (or “pseudo-tumor cerebri” as we call it), and the doctor DOESN’T prescribe Diamox, said doctor had better have a VERY GOOD explanation as to why the HECK you are not on that medication. And if they DO have a very good explanation (let’s just say a BAD allergy to sulpha meds, for example), they need to tell you what they are going to do to treat it. This is NOT something to ignore, Hon. Eye doctors usually treat pseudo-tumor cerebri with Diamox, and don’t even NEED an LP to do so. Heavens. My friend, if you need to see another eye doctor, PLEASE DO SO. K? Promise? Big hug, Diana

Dr D,
I was on diamox briefly thru my pregnancy they quickly took me off because it was not tested on pregnant women (at that point anyways) they put me on topamax 8 years ago and have been on it ever since.

Profile
 
 
Posted: 17 May 2012 11:07 PM   [ Ignore ]   [ # 8 ]  
Sr. Member
RankRankRankRank
Total Posts:  734
Joined  2012-04-17

Hi
Just checked my consultants report from when I was referred to the eye specialist in 2005, at which time I was having loads of problems. I thought it said papillaedema but it doesn’t, it actually says mild papillae in the conjunctiva with dryness, whatever that means ? 

He does comment that extra-ocular movements were full, though they were slightly painful on extreme peripheries (and remain so to this day - now accompanied with a nauseating feeling!).

In addition, other than strange visual problems, I have constant high pitched tinnitus, sometimes accompanied with what sounds like a lorry going up hill (on a morning). I can hear blood pulsing in my head. Sometimes the image I’m seeing flickers when I blink, I can also ‘see’ my heart rhythm pulsing in my vision from time to time. I’m sure these are the symptoms of raised intercranial (intracranial?) pressure.  Anyone else get these symptoms ?

What type of specialist is it best to see with these type of problems ?
Regards
Barbara
(UK)

Profile