Avatar universal

possible CSF leak but no doc with experience

I am a 45 year old female that developed a "thunderclap" headache 18 days ago.  All signs point to spontaneous CFS leak ( head pain in forehead, pain that goes up the neck into the head from between the shoulder blades, both relieved by lying supine within minutes to a 1 or a 2 on the pain level.  Standing they go to a 7 or 8 within minutes, sometimes taking up to 20 minutes.  Hearing is off- tunnel like sound and low level hum that varies in length and intensity.  lightheadedness when standing.  had nausea- but mostly gone.  vomiting- at times from pain.  Taste was metallic at the beginning of symptom onset, but has dissipated.  
CT on day 3- normal
MRI w/wo contrast -normal (but I can't get an answer as to whether anyone has evaluated it for p-menigial displacement/diffusment
CBC- day 5 normal
EEG day 15- no results yet but I am betting normal is it is a CFS leak.
My neuro told me she has never seen an orthostatic headache, or CFS leak.  So am I looking for someone to help us in the Tulsa area.  My hubby can take me within 150 miles, but after that it gets much tougher.  We are already making a hefty dent in savings, and it is frustrating to me that a way to diagnose it is also the cure.  So can you recommend anyone with experience with this (Dr. Hain in Chicago, Dr. Mokri at Mayo-Rochester didn't know of anyone in the area...)
3 Responses
623823 tn?1357416657
no need to live in such stress, please start to take Topamax and try never do an effort or ''constipation push'', I highly suspect a ruptured aneurysm necessitating peace and some studies like CT-angio, because we may find it! In case of doing nothing this event can appear again whenever u sneez or cough or hold your breath during sneezing!!! So try to never hold a breath because that will elevate the pressure in your head. i am amazed how your neurologist didnt thought about the possibility of ruptured aneurysm. Start Topamax 25 mg daily increasing the dose as tolerated to 100 mg or less untill the headach disappear
Avatar universal
Thank you for your answer Dr. Chahine.  Here is an update:  My doctor ordered a cisternogram which do not go well.  They encountered a 'dry tap' and were not able to get the contrast fluid in (and gave me some lingering issues).  Did a spine MRI which was clear as for a while they were sure I had a tumor as the cause of the dry tap.  The MRI, CT, spinal MRI and bloodwork all came back clear.  I had to be admitted to the hospital after the Lumbar Puncture for the cisternogram.  While there they started a caffeine drip which helped with head pain.
I am on week four of the the headache- which almost disappears completely when I lie down.  Vision fine, taste back to normal, hearing still tunnel like, numbness in hands when forced to sit up for more than 30 minutes.  BP is good, goes down a bit when I stand.  
623823 tn?1357416657
excellent dear, take in concideration those prohibited efforts i mentioned to you in the first message. take it easy :)

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