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Cerebral involvment

CaroleTT1222 Message
17 May 2018, 11:39 PM

I've read a few accounts of cerebral involvment. I am convinced that I'm experiencing (and have before, in retrospect) increased ICP symptoms. Before I was diagnosed in 2010, I had a few years where I was having what I think were "drop seizures" - total loss of muscle tone so brief, I'd be alert as I fell. There was a certain "fuzzy headed" sensation that warned me. I finally quit driving for a long time. I also cannot sleep lying down. At sll. Something makes me wake up enough to get out of bed and stand up. I feel only half awake for days. After bring upright for 12 or more hours, the foggiest lessens even though I'm exhausted from no sleep. I get double vision. Often I feel the need to breathe more deeply but I have to make a conscious effort.

I got off IVIG 3 years ago after being on monthly for 3 or 4 years. Now I see chronic symptoms that have come back and just stay. Swelling in legs and knees so tight I've sprung leaks. Joints are getting so painful, it's hard to walk. Also, when I get up in the morning, I feel like I'm being pulled to the left and I stumble constantly. This lessens during day usually but I have become very unsteady in general. Any insights?

Rita Wood Message
22 May 2018, 11:28 PM

I has off IVIG for one year and it resulted in a live threatening attack. I would work with your doctors let them know your symptoms are back. It is far to dangerous to wait.

Kimmieroumayah Message
16 Jun 2018, 01:13 AM


Have you tried a CPAP?  I do suffer cerebral symptoms associated with Capillary Leak.  I have migraine headaches,I pass out with out any warning while standing or sitting.  I have broken my ribs, broken my two front teeth, suffered a gash on the side of my head and planted my face into a plate of Eggs Benedict.

 I currently have an ulcer on my right cornea. The eye specialist explained the cause could be hypoxia.  I sleep on my right side and when I am lying down it is possible that my head does not receive enough O2 .  This can cause a gland  above the outside edge of the eyebrow that secrets fluid to become inflamed and function improperly leading to dry irritated eyes and a cornea that forms blood vessels, ulcers and eventually scars.  I have found that the CPAP does help.


krogers Message
9 Jul 2018, 07:52 AM

After my first attack in 2008 I developed excruciating headaches & pain on sides of my forehead - it was terribly depilating and the nights were a nightmare.

In hospital I was on morphine but the doctors could find little wrong apart from faint signs of inflammation.  Just as a stab in the dark I was given a strong dose of steroids - it was incredible the pain just melted away in 48hr.

I still sometimes get similar head pain but it passes.  Also suffer a little from a fuzzy head but have always put this down to the medication I am on for nerve damage. I am also finding my memory is deteriorating - as a teacher for example I am struggling to remember the students names which can be really embarassing.

CaroleTT1222 Message
24 Jul 2018, 10:27 PM

Thank you for your answers! Very helpful.