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Thread: New member wisdom needed

  1. #1

    Post New member wisdom needed

    Hello I have been reading posts for last 3 months and everyones bravery it has given me some hope- decided to join for have been refered to a radiologist who looks like will do a cisterogram.
    First big question: I have no officail diagnosis (unofficially diagnosed b12 defincint blood test, migraine from mri and just anxiety realted by another doctor. While a correct diagnosis may not be good at least I feel it will provide some peace to at least to know what has happened/happennig ia ma sure some members can know the feeling. So if it is not to much of a bother i need some inpute from some members if could have a spontaneous leak or not. Everything change for me in one night but my symptoms have been in a process of developing to where I am today.

    In march 2009 late one night i noticed lights were causing me some problems and then I felt a big BAM inside my head on the left side/ back of head like being hit by a 2x4. got to bathroom crawled to bed. nerver had a headache so bad consider it more of an event, like glass shattering. when ever I turned my head through out the night I could feel feel fluid sloshing from oneside to another to confused Next morning coordinaion balance way off ie could not get cup of water to mouth straight but later on I could drink from cup. I figured I had a stoke nothing could be done decided againt emergency room because of insurance for nothing could be done (stupid) From april may june 2009 pain localized from full head to left side and I cushioned head in a wing back chai for most of 3 monthsr- sloshing went away after 1 week able walk around the block 1 month after 1 month drive short distances after 3. pressure and nerve pain localized on left side and settled in as just pressure.
    Found my self after june 2009 to march 2011 with the following symptoms pressure headache on left side of head after being up for 15 to 45 minutes would lay down get bettter, get up it would start again. lay down better up presure again etc... medicine never helped pressure was "usually" managageable, except when light would hit eyes in a certain way and my brain and spine would have the "crazy bone nerve feeling" balance way off though. This march condition deteriorated stated going to doctors for help... This March 2011 to present... pressure snsation increased frequency and intensity, nerve pain spot arrived again in exact spot as (before march 2009) when pressure gets to a certain point nerve kicks in , intense photphobia and sound have to where sun glasses ,myclonic siezures, confusion, nervous, panic often funny bone feeling going down the spine is as worst as the headache, holding on to walls to walk, lost abilty to drive, nauseu, both light and sound and orthlogic now causing crippling pressure headaches salty thick post nasal drip especially in morning

    Tests MRI normal except small non specific white spots found in migraine patients
    MRA normal
    MRI spine normal some mild bulging c4 c5
    ENt test for Nystum normal
    ACTH test pituitary function low
    more specific test for pituitary function fine
    EEG normal

    Imetrix-ineffective 9no history of migraines
    celexa-increased to confusion and panic
    Gapapentin helped nerve pain but not pressure cause arterial fibulation
    ativan does helps for the panic

    Question 2: I live in Minnesota. Might it be wise to just go to the Mayo Clinic. My insurance will not cover Mayo. I was hoping to get most tests done in the twin cities (Dr.s Mpls/Saint Paul?) and go down there if they find anything, but as i think you know sometimes when you are in pain you will do anything and spend any monry to find relief. any advice would be appreciated
    thankyou

  2. #2
    Distinguished Community Member
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    Location
    NY
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    Hi Judah,

    I'm no Dr. but I've had epilepsy for over 30 yrs. and it sounds like you may be audio and photosensitive which means certain sounds and certain color lights are causing possible seizures which in turn always cause wicked headaches.
    Take note of the weather and when a low pressure is coming into your area if you notice that you get more headaches during a low pressure this is a form of seizures. Often a person will have poor balance, migraine headaches, depression and anxiety with epilepsy.
    In regards to the sound you hear in your head that could be spinal fluid or extra water in the ears. My advice to you is to see an Epileptologist at an Epilepsy Center. These Drs. specialize in Epilepsy as well as
    neurology disorders. You can usually find a Epilepsy Center at a big hospital or a University Hospital. You should have the Dr. do a fMRI along with a special type of e.e.g. where they flash different color lights one at a time by doing this
    type of e.e.g. they can find out if you are photosenstive as well as audio sensitive. The small white spots on the MRI could be scar tissue. Stay away from nutra sweet (aspartame) because that will cause more electrical activity in the brain
    and can lead to seizures. You might want to post a thread down on the epilepsy forum I'm sure many people could relate to what's going on with you. I wish you the best of luck and May God Bless You!

    Sue
    Last edited by Porkette; 08-28-2011 at 10:58 AM.

  3. #3

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    Thanks for responding Porkette, I had a eeg and it turned back but normal but was kinda of questioning it because the a sensor on the "cap" was not placed where the pain was. A Close friend of mine has epilepsy and it diificult for him for he never knows when he is having a siezure. If one gets crushing pressure headaches everyday from epilepsy it might be a possibility. Have consultation with a radiaiologist for a prossible L.P and/or cisterogram (sp?) have never had one so do not know what to expect. Hopefully, he can help me. May God Bless you too Sue

  4. #4
    Distinguished Community Member
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    Oct 2006
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    NY
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    Hi Judah,

    Sometimes an e.e.g. won't pick up any seizure activity because it's to deep into the brain and it won't show, this is what happened with me and it wasn't until I had brain surgery done that the Drs. found out I had brain damage
    on both the right and left temporal lobe of my brain. Two good tests that can be done is a PET scan and a SPECT scan. If you have an extra calendar around your house write down what time these possible seizures and headaches
    are happening. Also write down when you start and stop your monthly cycle because hormones can have a lot to do with seizures in women. By doing this you Dr. may see a pattern in your headaches and possible seizures. I know
    my epileptologist saw a very good pattern in my seizures and I would always have them the same days if each month and around the same time of the day.
    Here's wishing You Well and May God Bless You!

    Sue

  5. #5

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    Please help anybody experienced in csf leaks! Tommarow tuesday I go in for a flouroscopy will a flourscopy with xray pick up a cranial or spinal leak I thought cistrograms would. Also they are not doing any tests on the spinal fluid when they do it. What if any should i test should I ask for for the spinal fluid.

    Judah

  6. #6

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    Hi -I am sorry, but I do not always know the terminology for the cranial leak imaging. It usually take the injection of some contrast dye and some imaging to see a leak. Usually the spinal fluid is not tested when they only suspect leaking. As them to describe exactly what they are doing? Also ask them how this would be different from a cisternogram. You want them to take imaging in the 3 planes ... either CT or MRI depending upon contrast used. Thin slicing between images also helps to detect smaller leaks. Good luck!!
    Jeanne
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

  7. #7

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    Thanks Robbysmom for replying. Talked to the neurologist nurse and she said that the radiologist is just going to test the opening pressure and if it low inject saline solution. the radiologist's says they are going to do a flouroscope and a x-ray on a tilt table. I have no idea wether that means a cat or mri. the orders are in i do not know if i can change them. if it is a cat or mri all ask for three planes and thin slicing. thanks for your advice to ask questions as I go to bed realize just how much lack of control one has once the doctor has made up there mind and what to test. wish i could have met with the radiogist befor the test day tommarow. just knowing what the opening pressure is will give me a clue to wether it is spinal fluid leak but as I have heard sometimes that can be misleading. Asking questions will also give me clue how much they know about csf leaks if this is what is going on and wether this hospital and group of doctors can help. my internist thinks orthostatic headaches is the cause of the pain but i am still unsure the neurologist and radiolgist is on board with his opinion. thanks for your support wish all the best to you and your son.

    judah

  8. #8
    Community Member
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    Nov 2009
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    Long Island, NY
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    Judah --
    I feel your pain, and frustration on not having a definitive diagnosis. I am in the same boat, and that alone can cause a lot of anxiety. In addition to feeling so awful, it's the worst to have to deal with being anxious, so I am glad the Ativan helps you.

    I agree with your comment about opening pressure --- in December, my LP showed an opening pressure of 14 1/2, which is in the normal range, yet Dr. Gray found 3 spinal leaks. So one person's "normal" may not be another's.

    Hopefully your doctors will locate the problem and correct it soon. I will keep you in my prayers.
    - Marianne

  9. #9

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    Thanks Marianne, I got up this morning after the LP yesterday wondering if the opening pressure of 16 would preclude a diagnosis of a spinal leak. The intial thunderclap headache (march 2009) was on the left side of head so it might be a cranial leak vs spinal. I do not know effects the opening pressure as the same a spinal leak vs cranial. Your input was just the question I was going to ask. Thankyou for your prayers too. As I was looking up at the cieling waitng kinda feeling down w after the procedure i felt for the briefest moment Gods care for me through this all, something I had not felt for a very long time. Wish I could give some advice to you but I am still looking for answers to see if the medical community can help with the pain or not. all the Best to you and your family.

    David

  10. #10
    Community Member
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    Nov 2009
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    Long Island, NY
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    David ---

    Just a thought. Today I had occipital nerve block injections, which I receive every month to try to alleviate my neck pain - an unfortunate side-effect of the spinal headaches.
    I have rarely cried thru any of this these past 3 years, but I broke down to my neuro today. Thank goodness he is very empathetic, and didn't freak! He suggested Xanax, when it seems like the pain is causing too much anxiety.
    I take 1/4 mg, and since it lasts only 4 hours it gets me thru the very rough times, or when I'm unable to lie down and take care of myself for a bit.

    I am not a big proponent of medications at all, and take my pain meds only when absolutely necessary. But I've found that little bit of Xanax really helps me - usually only a few times a week. It also relieves the motion sickness I get in the car. Go figure! I am tired of being strong all the time - this is definitely not a fun situation to be in, so if I can get a bit of relief I'll take it!

    Perhaps if you speak to your neuro, you could see if that might help you get thru the really bad episodes. I'm also on Cymbalta, for the nerve pain, and Percocet or Fioricet for the acute pain. I'm not sure if you can take the Xanax with Ativan, but I know I am able to with my meds.

    Were they able to find any leaks with the LP? If so, did they do BP?

    You are definitely right, God IS paying attention. And so are the wonderful, kind people on this site who are helping all of us thru this journey!

    Best of luck -
    Marianne
    Last edited by paradice15; 09-02-2011 at 05:41 PM.

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