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Optic nerve hemorrhages, chronic headaches & increased spinal fluid pressure

Personal background: 28 year old female, average height and weight (5'5", 165lbs), nearsighted, history of chronic pain since I was 13 - migraine-like headaches of increasing severity/frequency. At least some level of pain every day, with major headaches every week. Headaches come with nausea and occasional vomiting (once every month or two). Initially ID'd several years back as a general Occipital Neuralgia but all MRIs and other tests have come back negative/inconclusive. Headaches worse upon extending my neck and or repetitive movements (looking up and down, for example). The only treatment its responded to is the occipital nerve blocks. i have a poor sleeping history (takes an hour to fall asleep, wake up easily and frequently). The neurologist I saw noted that I have unusually cold extrmities, but nno history of numbness.

Current situation: During a routine eye checkup last month I was found to have bilateral optic nerve hemhorrhages. Not extensive, but obvious enough to a basic optometrist. Follow up exams with a neurologist and opto-neurologist (neuro-opthamologist?) found signs of papillodema, but they weren't sure if it was just my normal, myopic anatomy of if it really was increased pressure. So this past Friday I had a lumbar puncture - they took an opening pressure and two vials of fluid. I just found out today that the test came back with higher than normal pressure. I'll find out the culture test results next week at my follow-up. I will also be going for an MRV (MRI of the venous/circulatory system) in the next week or two.

I've been doing a lot of research, and I've found increased spinal pressue to be a symptom but not really a cause of other medical problems. Basically I'm trying to figure out what could be causing it, and if my chronic neck pain/headchache problems could be related.

Based on what I've described, can anyone give me any ideas as to what could be going on? Many thanks in advance!
5 Responses
Avatar universal
Sounds like Pseudotumor Cerebri or Idiopathic Intracranical Pressure.  
Avatar universal
Funny thing is, I first read about that just  last night and had never heard of it before. Isn't it primarily women who are pretty overweight? And would it explain the headaches/neck pain that I've had ince I was a team? When I was reading up on it last night I couldn't really find an answer to that question.

Avatar universal
You don't have to be overweight for this to occur, however, alot of women are overweight though.  Not to be rude, but you are overweight according to your height and weight you have provided.  

Another disorder that came to mind was Chiari Malformation.  
Avatar universal
No argument there, and no offense taken. :)

I did actually have an MRI specifically to look at Chiari Malformation. My neurologist said that while the cerebellar tonsils looked a bit “snug” there definitely was not enough to even close to a Chiari Malformation. It all sounded so appropriate for what I'm dealing with too!
Avatar universal
I think you should get a second opinion in regards to the "questionable" Chiari.  Find someone who DIAGNOSES AND TREATS CHIARI.  All NS and NL are NOT knowledgeable about this condition.  

I would recommend ruling those two conditions out.  

Post in the Chiari Forum as well dear.  That forum is excellent and very supportive.  
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