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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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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?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Vision › 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?

  • This topic has 8 replies, 5 voices, and was last updated 10 years, 10 months ago by Barbara.
Viewing 9 posts - 1 through 9 (of 9 total)
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  • April 28, 2012 at 1:16 am #171
    whatsreallygoingon
    Participant

    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?

    April 28, 2012 at 8:47 pm #2073
    PalominoMorgan
    Participant

    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.

    April 28, 2012 at 8:51 pm #2074
    whatsreallygoingon
    Participant

    oh it very much is related to it 🙂 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?

    May 3, 2012 at 11:21 am #2099
    Carolynjoy
    Participant

    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.

    May 3, 2012 at 11:26 am #2100
    whatsreallygoingon
    Participant

    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.

    May 8, 2012 at 5:21 pm #2127
    Dr. Diana
    Keymaster

    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

    May 8, 2012 at 5:31 pm #2128
    Dr. Diana
    Keymaster

    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. 🙂 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? 🙂

    May 16, 2012 at 2:40 am #2167
    whatsreallygoingon
    Participant

    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.

    May 17, 2012 at 11:07 pm #2178
    Barbara
    Participant

    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)

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