Avatar universal

Dry Brain

I've dealt with ventriculoperitoneal shunt malfunctions throughout my lifetime,  which lead me to experience an extensive series of seizures following very excessive drainage of cerebrospinal fluid n
That drainage caused my brain to become dry and shrunken, causing excruciating pain that has been changing over the past few years.

I think I've been suffering from an undiagnosed Acquired Brain Injury.

My head has felt like it is being shocked, burned, crushed, stabbed and poured into a bucket of ice in many occasions.
I have a constant headache that surrounds my skull like a helmet and fluctuates in intensity.

I have numbness on the sides of my head, especially the left side,  where my shunt migrated.
Other areas of my head will feel numb, especially where my head connects to my neck.

I was born with Bergmeister's Papilla,  which is involuntary movement of the eyes.
These movements changed after the series of seizures in 2011.

I have aching that is either isolated or covering many places on mu head at once. This pain can become so severe that it causes me to not be able to stand, speak or move.

My neck is always stiff and I have constant facial pain and tension headaches. My limbs are also numb often and my chest can become tight. I think my shunt is too tight.

I've been told that I could be dealing with Trigeminal Neuralgia, Cluster Headaches,  Chiari Malformation or a possible aneurysm.
Often, since those seizures in 2011,  my vision is blurred and doubled.
I experience a lot of eye pain.

I'm always tired despite the fact that I rarely have adrenaline rushes for no apparent reason.

If anyone can relate to this at all and could help me understand whst may be happening,  I would greatly appreciate your time, patience and kindness.

My hearing used to seem like Pulsatile Tinnitus, but that ringing is now permanent
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Avatar universal
2-15-15 8:41AM
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Avatar universal
2-15-15 8:41AM
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1780921 tn?1499301793
I just have a few questions if you don't mind. Have you had a CT scan of your head with contrast done to confirm you do have a CFL and if so has the leak been stopped?
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Avatar universal
Thank you.  

I've had surgery for the implanting of the shunt andone shunt tap during childhood. Other than that,I don't know what prprocedures I've been through since they, undoubtedly, happened in infancy and probably while I was unconscious after the shunt tap.

Again, thank you for your concern.

I'm sorry about not responding sooner. While my username and password are recorded somewhere, they were no longer in my phone because I mistakenly removed them and I had forgotten what they were.

I hope you're having a nice day.  :-)

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Avatar universal

Once I finally had a chance to search for the symptoms of a CFL and remembered to do so, I found this.

While some of the symptoms relate to what I experience, I've never seen CSF drain from my nose or ear.

Do you experience this yourself? <3

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