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    Transformed Migraine

    Has anyone been diagnosed with "Transformed Migraines"?

    This is a form of Chronic Daily Headache, where migraines over time become more and more frequent, blurring together until there is a 24...
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    Travelling to Mayo Clinic - Dr. Dodick

    I'm back to this site again, searching for more answers on my never-ending quest to find a definitive diagnosis!

    I am not content to accept my neurologists' diagnosis of Multiple Chronic Daily...
  3. Hi Kate --- Good advice. You are so right. I...

    Hi Kate ---
    Good advice. You are so right. I guess I have just been searching for a solution, and should not ignore my past experience.
    I told my husband last night that Botox in any form is not...
  4. Thank you, Kate, for your input. Did you have any...

    Thank you, Kate, for your input. Did you have any relief from the Botox injections? I would like to know how you did, even if it was temporary.
    I'm not sure why my neuro is suggesting the Xeomin, so...
  5. Botox injections for Chronic Daily Migraines

    Looking for help!

    Has anyone tried Botox injections for relief of chronic daily migraines?
    My neurologist is recommending XEOMIN, a form of Botox, and looking at the side-effects gives me a...
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    Thank you so much for posting. I feel for you -...

    Thank you so much for posting. I feel for you - good luck on your road to recovery.
    - Marianne
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    Botox injections for Migraines

    Help again!
    Has anyone tried Botox injections for relief of chronic daily migraines?
    My neurologist is recommending XEOMIN, a form of Botox, and looking at the side-effects gives me a bigger...
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    Cefaly Device

    Have any of my fellow migraine-sufferers tried a Cefaly Device?
    I live in NY, and unfortunately they are not sold in the USA, only in Canada.
    My neuro provided several websites, and I am checking...
  9. Thread: Flumarizine

    by paradice15
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    Flumarizine

    Hi everyone ---

    Has anyone gone on Flumarizine to prevent migraines?

    After 5 years of misdiagnosises, I now have a new diagnosis of multiple daily chronic migraines which fits my symptoms. My...
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    Depacon Infusions

    Hi Jingle ---

    Yes, I went thru the Depacon Infusions in June - I made some notes on 6/13 on my experience.
    So far, I still have my multiple daily migraines, but I am being patient and hoping...
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    Just a follow-up, in case anyone on this site has...

    Just a follow-up, in case anyone on this site has to undergo these Depacon Infusions.

    They are used to break the cycle of migraine headaches, calming down the mis-firing neurotransmitters in your...
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    Hi Dagaz -- Thank you for your comments! I...

    Hi Dagaz --
    Thank you for your comments! I recently sought another opinion at Columbia Presbyterian Hospital, and met with a very thorough and inciteful neurologist. She is taking a different tack,...
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    Depacon Infusions

    I have been a member of this site for almost 5 years, due to an accidential cervical dural puncture, multiple blood patches, and a subsequent brain clot, which has resolved.

    I've had multiple...
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    Dagaz -- Thank you so much for your comments. I...

    Dagaz --
    Thank you so much for your comments. I haven't rushed into anything during these past 4+ years, and after reading your note I definitely won't rush into this! I'm so sorry you had that...
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    Lumbar Peritoneal Shunt

    Hi everyone --- Anyone who can help me sort out this medical conundrum ???

    I am back to this forum, after having been off for awhile. I really would appreciate input from my poor fellow sufferers!...
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    Hi everyone --- Anyone who can help me sort out...

    Hi everyone --- Anyone who can help me sort out this medical conundrum ???

    I am back to this forum, after having been off for awhile. I really would appreciate input from my poor fellow sufferers!...
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    Joy --- Thank you so much for your comments and...

    Joy ---
    Thank you so much for your comments and concern. I have used this website for myself for the past 3 years while struggling with CSF leaks, so am aware there are wonderful people in this...
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    Arnold-Chiari Malformation

    I am new to this thread and I would appreciate help with my daughter, Jenna's, situation.

    She was diagnosed several years ago with Arnold-Chiari(age 19), with the MRI showing the cerebellar...
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    I am new to this thread and I would appreciate...

    I am new to this thread and I would appreciate help with my daughter, Jenna's, situation.

    She was diagnosed several years ago with Arnold-Chiari(age 19), with the MRI showing the cerebellar...
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    lpknight --- Sorry I haven't been on this site...

    lpknight ---
    Sorry I haven't been on this site in awhile!
    To answer your question, no - I have not been able to determine if I still have a CSF leak.
    Dr. Leithe located 3 leaks in my thoracic...
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    lpknight --- I feel so bad that no one has been...

    lpknight ---
    I feel so bad that no one has been able to refer you to someone in your area, so I thought I would just share my experience for what it may be worth.

    The best I can do is recommend...
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    Dear Ging -- I can only tell you my...

    Dear Ging --

    I can only tell you my experiences in my journey to get relief from these CSF headaches. I hope this helps.

    Last year I went to Duke, where Dr. Gray performed a spinal tap to check...
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    Laura -- And here I thought I was on to...

    Laura --
    And here I thought I was on to something! Dr. Schievink is the best - I should have known he would check out every angle.
    We'll all keep plugging away for an answer.
    Thanks for your post...
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    I am not sure why they call it Stand-Up MRI, as...

    I am not sure why they call it Stand-Up MRI, as the machine is actually equipped to have you sit during the test! From what I was told, there is no actual standing for any MRI in this machine....
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    Stand-Up MRI for diagnosis

    I recently posted that I was undergoing cervical and brain MRIs, with and without contrast.

    Since my symptoms occur while I am upright, and subside when horizontal, I had suggested to my...
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    Jeanne -- First of all, I sincerely have to...

    Jeanne --

    First of all, I sincerely have to commend you on still posting on this site and giving all of us support and information! I am so happy Robby has gotten relief, after all that boy went...
  27. That sounds like Dr. Gray! Don't give up hope....

    That sounds like Dr. Gray!
    Don't give up hope. Chin up, you'll get thru this.
    Best wishes - Marianne
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    Excellent article - thank you for posting!

    Excellent article - thank you for posting!
  29. Sarah -- I hear your frustration, and...

    Sarah --
    I hear your frustration, and sympathize.
    Just a thought --- have you sent your records and films to Dr. Gray for review?
    Perhaps if you did, and she is agreeable, you could request a...
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    Jeanne -- I definitely have a list of questions...

    Jeanne --
    I definitely have a list of questions for my ns before or IF I undergo that ICP test. I'm still concerned I'll be in an ICU situation, since I know they won't appreciate me walking around...
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    Thia -- I will definitely post the results of...

    Thia --
    I will definitely post the results of the Stand Up MRI, since I have shown no brain sag at all in my prior brain MRIs.
    My headaches are particularly triggered by riding in the car, and this...
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    You are both so on target! Just like when my LP...

    You are both so on target! Just like when my LP was done, and the opening pressure was completely normal. Well, of course! I had been lying still for almost an hour while being prepped and filmed,...
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    Sarah - What is CBT? I'm learning distraction...

    Sarah -
    What is CBT?
    I'm learning distraction techniques, and adaptation, which certainly help me!

    We are discussing my ICP next week after I undergo 2 more MRIs with contrast. I've had so many...
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    Sarah - I hear your desperation and obvious...

    Sarah -
    I hear your desperation and obvious frustration, and can only send you prayers and say hang in there- hopefully you will find answers soon. Do NOT feel you are cracking up -- chronic pain is...
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    Sarah -- Thank you for responding so quickly. I...

    Sarah -- Thank you for responding so quickly.
    I was told today that I would be in ICU for 1-4 days, depending on my readings. This threw me, since only VERY sick people are in the ICU! I may sound...
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    ICP monitor --- any input?

    Any info on this procedure would be greatly appreciated! I have several more MRIs scheduled, then my neurosurgeon is recommending this monitor. Since I did not realize there could possibly be any...
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    Just wanted to wish you all the luck on this...

    Just wanted to wish you all the luck on this procedure!
    - Marianne
  38. Hi everyone --- As usual, when I read these...

    Hi everyone ---
    As usual, when I read these comments I feel blessed that I'm able to function better than most. And I have avoided those pledgets - they sound horrible! Always look for the...
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    Thank goodness you have a definitive diagnosis!...

    Thank goodness you have a definitive diagnosis! If you have read this site for awhile, you will realize we ALL were questioned by our physicians (and ourselves!) for a very long time before the truth...
  40. Thread: Cambia

    by paradice15
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    Cambia

    Has anyone tried Cambia? It's a fairly new NSAID for acute migraine attacks. I have tried samples my neuro gave me. Since it's mixed with water, it works quicker, but I only get 50% of the relief I...
  41. Lumbarlady & Leaking --- I thought I was...

    Lumbarlady & Leaking ---

    I thought I was crazy, as I am experiencing a constant stiff neck, and pain in my upper back along with these crazy headache. Thanks for posting that. I guess it comes as...
  42. Lumbarlady -- I hope you are still monitoring...

    Lumbarlady --

    I hope you are still monitoring this thread, as I have some questions, if you don't mind. I had a spinal leak caused by a botched cervical epidural in September, 2008, and have been...
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    David ---- Sorry I haven't been on the site for...

    David ---- Sorry I haven't been on the site for awhile. Life got in the way! But I would be interested in how you did at the neurologist in early Sept.
    Hoping you are experiencing some relief now...
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    David --- Just a thought. Today I had...

    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...
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    Judah -- I feel your pain, and frustration on...

    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...
  46. Leaky -- I agree, lying flat is not fun at all....

    Leaky --
    I agree, lying flat is not fun at all. Downright boring. I will definitely check on the amount of time I'll need to be flat, and TRY to stick to it. That is, if I decide to go thru this...
  47. Thanks for your info, Laura. I guess not having...

    Thanks for your info, Laura.
    I guess not having had any ha relief after the EBPs kind of throws a wrench in the works.
    I'm a medical mystery at this point!
    But still on a mission, like all of us...
  48. Can I please get advice from Fibrin Glue recipients?

    I have gone the road of multiple EBPs for repair of my spinal leaks over the past 2 1/2 years, and now face the possibility of fibrin glue.
    Dr. Gray performed my last 4 EBPs in December, 2010, and...
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    Laura --- So nice to see a friendly name - I'm...

    Laura ---
    So nice to see a friendly name - I'm totally confused by this new layout, and hope to get a handle on it soon!
    Glad to hear your little guy is fine. I can imagine the panic with a fever...
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    Txcinda -- I would like to join everyone else in...

    Txcinda --
    I would like to join everyone else in saying I will be thinking of you and wish you a speedy and complete recovery.
    You are certainly in the best hands possible with Dr. S.
    Good luck -...
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