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Empty sella syndrome or intracranial hypertension?

Dec 11, 2014 11:25 PM

I was Dx with fibromyalgia several months. I had constant pain everywhere. I finally got my appt at the pain clinic at the hospital and was given Neurontin & Zanaflex which have done an amazing job at handling my overall pain. However the one pain would not go away and that was a constant headache that I just couldn't get relief from. After a month and it getting worse they did an MRI and couldn't find my pituitary gland, so I was Dx with Empty Sella syndrome. I have a horrible headache constantly and just can't get rid of it. I see a neurologist next Wednesday for the first time. I hope to get answers and relief. I saw an optamologist he looked at my retinas and my left one appears that my optic nerve looks "heaped" however, he says it looks more like I was born with it instead of from a disease process. He wrote a letter to neurologist suggesting a lumbar puncture. Does anyone else have this that may give me some insight?

Dec 16, 2014 11:05 AM

I don't have it but i would recommend asking for a FMRI (Functional Magnetic Resonance Imaging) this will show up your blood flow and everything and will (to the trained eye) show how much pain you're in.

If they say no then either demand it (i would demand it or find a dr that will do it) or ask for an MRI with contrast ( i think they would probably use gallium). It will show up your brain in better detail.

You could try acupuncture to help and get the lumbar puncture (I wish I could).

If you want more info on anything or more advice let me know

Dec 20, 2014 7:18 PM

I have IIH ( Idiopathic intracranial hypertension) I have 4 lumber punchers for this so far and have tried a number of different medications. People with condition suffer from increased intracranial fluid causing pressure on the optic nervs, which in turn causes them to swell, the constant head ache you feel the is your brains way of trying to deal with increased pressure inside your skull. This condition is quite rare and as yet there are no ways of "fixing" it. Some people manage to control it with medication and lumbar punchers. The lumber puncher will give you/ the doctors an idea of how high your intracranial pressure is (between 7 and 15 is average, although some doctors will accept anywhere below 20 as being okay) when I was first dignosed I had an intracranial pressure of 50 which lead to me having server paplidma (swelling behind the eye) and a burst blood vessel which left me nearly blind in my left eye. The pressure was then brought down with the lumber puncher and my eye were allowed to heal, I now struggle with up and and down pressure every 6-8 weeks.

This is just my story but it's worth getting on Facebook and looking for IIH groups, there are a couple of very helpful ones with people who suffer from the same condition and will answer any further questions you have.

Dec 21, 2014 8:35 AM

Oh wow, MrsJeeby, I am so sorry you have to deal with that! I have constant headaches too but what you're describing is very scary! I'm glad you found a way to deal with it that works for you. Thank you so much for sharing!

Dec 21, 2014 11:04 AM

Thank you MrsHeeby. Since I posted this I have been to the Neurologist. I go for my first lumbar puncture tomorrow to check my pressure. My short term memory has been affected for sure. My eyesight has diminished slightly too, although I still register 20/20, I have to strain past the blurriness to get there. The neurologist said my optic disc appear flattened. After 3 months of having constant headache, some days worse than others, I had 5 days of barely feeling any pain but still had the pressure feeling behind my eyes. However it only lasted 5 days and when it came back it came with a vengeance and I thought I would lose my mind. Never in my life, next to giving birth, had I ever felt such a pain in my head and it lasted a miserable 8 hrs until it finally let up. I found that a cooled washcloth across the eyes did make it bearable. I am anxious about the lumbar puncture because they are doing it in radiology with an X-ray due to me being overweight. I am so hoping it wil alleviate some of the pain. Will keep y'all in the loop.

Dec 22, 2014 11:05 PM

My lumbar puncture was a 20, the Dr doing it said that was normal. Which frustrates me.

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