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View Diary: My world grows darker (114 comments)

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  •  Intercranial pressure (5+ / 0-)

    means there is too much fluid on the brain which doesn't appropriately drain and needs an intervention because the excess fluid will cause brain damage.  You can actually die from excess fluid on the brain.  It is a very serious condition which turmeric will not help because the condition isn't just inflammatory, it is pressure caused by fluid and excess fluid causes the brain to atrophy.  Too little fluid is also a problem.  The brain needs almost a perfect balance of fluid.  There isn't a simple alternative answer.  I have the same condition and there was nothing short of a VP shunt placement to stop the progression of symptoms.  Other than that I had to take Diamox (acetazolamide) which slows the production of spinal fluid and have weekly spinal taps.  

    "During times of universal deceit, telling the truth becomes a revolution­ary act. " George Orwell

    by zaka1 on Tue Feb 05, 2013 at 08:51:25 AM PST

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    •  Check the many links about DMSO and (1+ / 0-)
      Recommended by:
      raincrow

      intracranial pressure. There has been some remarkable work done, but mainstream medicine hasn't really explored it. The applications may be more for TBI than the condition of the diarist. That was why I suggested trying to find a medical group familiar with its use.

      My mention of turmeric was as an aid to general conditions of pain and inflammation, not to specifically address the IP condition. Turmeric can act as a blood thinner, one of its effects. Like anything, I look up side effects and benefits, and weigh them. Turmeric doesn't have anything like the side effects of opiates and NSAIDs for pain. That's why I use it. I don't know whether or not it could help in this situation.

      My wish is that there was a closer cooperation between what is termed 'conventional care' and CAM, or 'Complementary and Alternative Medicine. Dr. James Gordon, MD, directed the CAM aspect of medical regulation under Clinton. I have met him, and he has a refreshing and empirical approach to medicine. He is willing to consider all modalities, and is a psychiatrist who has found options to many drug regimens.

      There are options, but you really have to dig. I think the Dr. Oz phenomena both aids and hinders this process. He has made millions think about the correlation between diet and health, but he has stuck in some controversial supplements and practices that muddy the waters.

      As with most situations, you have to think and research for yourself, and not just jump on the bandwagon of any regimen, be it 'conventional' or 'alternative'.

      You can't go back and rewrite your past, but you can use your past to create your future. ~ Ray Lewis

      by 4Freedom on Tue Feb 05, 2013 at 09:58:21 AM PST

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      •  I wasn't trying to pick on you (3+ / 0-)
        Recommended by:
        gmats, SoCalSal, raincrow

        or your suggestion, but please understand that when you have fluid on the brain it is serious and more painful than anyone can even realize.  When you have opening pressures in the 30s (whereas a normal pressure for someone like me should be about 8) your at serious risk for many things.  Trust me if you ever had intracrainal pressure in the 30s you would even think about Turmeric because you'd be swallowing opiates by the handful if you could because the pain is that bad.  Trust me, until you have felt the kind of pain that makes you vomit and want to die, you don't understand.

        "During times of universal deceit, telling the truth becomes a revolution­ary act. " George Orwell

        by zaka1 on Tue Feb 05, 2013 at 12:17:25 PM PST

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    •  You know where I'm at then (5+ / 0-)
      Recommended by:
      zaka1, cpresley, ColoTim, SoCalSal, raincrow

      They've had  me on as much as 2000 mg of the diamox, my first "lumbar puncture" registered a pressure of 48.   Subsequent ones after my LP shunt implant have been lower, but still in the 30s.  They discussed possibly replacing the LP shunt with a VP shunt, but the fact of the very limited effect of shunt at all made it seem like it would hardly make a difference.  My biggest problem is a blood clot in a sinus that the spinal fluid normally uses to exit the brain.  The clot essentially acts as a dam for the fluid, leading to the pressure buildup as the fluid seeks alternate routes out.    They tried to break down the clot, but the brain bleeding I have gets exacerbated, so there's a definite limit to how intensely they can push the anti-clotting factors.

      Ever get the feeling you've been cheated?

      by ActivistGuy on Tue Feb 05, 2013 at 10:39:01 AM PST

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      •  Wow, (5+ / 0-)

        I didn't know about the blood clot, but I kinda understand where your at with the drainage problem and the difficulty with the VP shunt.  The shunts aren't a perfect science.  I understand the routing of fluid problem and the last thing you want is a bleed in the brain.  I don't think many people realize that the sinuses are actually part of your brain and when there is pressure there, there is pressure in your brain.  

        The problem I have with the VP shunt is it is necessary to drain the fluid, (I had the back of my skull removed due to a previous surgery and a fluid flow problem due to a birth defect), but then it causes additional problems since I developed slit ventricle syndrome after my shunting.  But, the damage to the back of the brain is where my fluid damns up and causes problems.  

        Pressures in the 30s are high.  My opening pressures were in the 30s as well and that was while I was taking the Diamox too.  I hate Diamox, it is a nasty medication, your always dry on the stuff.  When they did the spinal taps and removed the fluid I could actually feel the pressure being taken off as they drained me, it was like lifting a veil.  I could actually stand and walk for a least 24 hours until the fluid built back up again.

        I'm sure even to try and surgerically remove the clot is dangerous because it could cause a bleed in the brain.  I have known people with the lumbar shunts that have gone to the VP shunts and had better results.  But anything with the brain is trickey because sometimes it seems like the brain is its own separate entity and when you have a fluid problem it causes so many things to not work right.  I would imagine that the VP shunt could be very dangerous since they go through the right side of the brain with a catheter and with a blood clot that could probably put you at risk of bleeding.  Gosh, I'm so sorry about this.

        If I can do anything please let me know, even if it is just being supportive.  I went through some of the same stuff of losing my independence to some degree and all the while I had worked most of my life just so I never had to depend on anyone.  Well, life just didn't work out according to my plan.  By the way we are the same age and I can understand your feelings.  Please keep us posted I would truly like to know how you are doing.

        "During times of universal deceit, telling the truth becomes a revolution­ary act. " George Orwell

        by zaka1 on Tue Feb 05, 2013 at 12:10:27 PM PST

        [ Parent ]

      •  Well, that answers my shunt question. Damn. (2+ / 0-)
        Recommended by:
        ActivistGuy, zaka1

        {{{{{{{AG}}}}}}}

        YES WE DID -- AGAIN. FOUR MORE YEARS.

        by raincrow on Tue Feb 05, 2013 at 05:56:05 PM PST

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