Ongoing research study at DUKE re: Dizziness & Vertigo for RHS & MM folks

Discussion in 'Your Living Room' started by Wylee, Mar 2, 2011.

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  1. 1artsychick

    1artsychick New Member

    Thank you Joe/Bulldog. a hero - aw shucks, you make me blush. I don't know about being a hero, but I'm so glad I can inspire people. I hope you are doing well, and things are improving. I didn't know it was you who wrote those lovely words about me. Thank you, it held such gravity to see someone else talking about my experiences. Thank you for all of your support! Please keep in touch and let me know how you are doing.

    Dan,
    I'm enjoying our correspondence. Please always feel free to get in touch with me for questions or venting, or anything. And thank you for the complement on my blog, I have found it very therapeutic, and found a wonderful group of people who I am so honored to call friends. They have been, and continue to be, a wonderful support.
    I look forward to hearing more about your story.
    Please keep in touch.

    wendy
     
  2. james

    james ''Everywhere I go there I am'' GS

    I just contacted Dr.David and he said that they are seeing very good results with mav patients!!!
     
  3. otter95

    otter95 New Member

    I just came back from seeing Dr. Kaylie and Dr. Gray myself about a month ago. My opening pressure was too high and my head cleared up significantly when Dr. Gray removed fluid. I am on diamox now to keep the fluid levels down and it is helping significantly. I am still dealing with some head pressure as we try to figure out the right dosage of meds for me, but the constant dizziness is pretty much gone now! I also still have vestibular weakness in both ears from dealing with this for years, which limits how much I can do balance-wise. For example, I can drive very comfortably locally at lower speeds and shorter distances, but driving on highways wears me down quickly. This is probably because I am compensating more with my eyes for balance. It remains to be seen whether I recover any of my vestibular function.

    It is unclear what my actual diagnosis is. Doctors rely heavily on hearing fluctuations to help diagnose Meniere's and I was already deaf in both ears before I had balance problems. I don't have the classical pattern of Meniere's (only two true vertigo attacks in the past year). My symptoms seem to fit the description for MAV a little better than Meniere's, but nobody knows for sure.

    I have tried almost every non-surgical treatment suggested on these boards and diamox has been the most effective one for me so far. I did have some limited success with antivirals in the past, so a viral pathology is still a possibility in my case.
     
  4. hollymm

    hollymm Me, 'in' a tree.

    Hank - Am I right in thinking that you believe maybe it's trama of some kind to the spine that creates this hper/hypo fluid flow? I saw the question about what the doctors believe is causing the flow to be abnormal (viral). Have you contacted one of the doctors to ask? I thought I saw an 'e' mail address to go to...Have you gone that route yet? It feels like you're on the edge of something and just want some more information...

    Could it be possible that you intend to update your NUUCA database if the infromation of a viral type infection could be the cause along with injury or misalignment?
     
  5. james

    james ''Everywhere I go there I am'' GS

    otter95,
    That's great that you are getting results,I hope you continue to improve,please keep us posted.

    Do you mind if I ask what the visit entailed? Could you if possible elaborate on what happened.
    Did they do a lot of new tests on you?Was the visit covered by insurance?Etc.
    Thanks,
    James
     
  6. otter95

    otter95 New Member

    They first tested my balance function. Normally they would also do an audiogram, but they skipped it for me since I was already profoundly deaf in both ears. The balance testing took a couple of hours and included:

    VNG: involves tracking different light patterns with your eyes as well as tests that involve movements of the head and/or body. It also involves running warm and cold water into the ear canals.

    Rotational Chair: involves sitting in a dark room watching various light patterns. The chair rotates at times while you look straight ahead and continue talking to the audiologist.

    VEMP: you recline in an exam chair and listen to a loud sound while the audiologist takes a recording from the muscles in your neck.

    My balance test results showed almost equally low responses in both ears. After that I had an evaluation with Dr. Kaylie to review the test results and discuss my symptoms and medical history. From that, he determined that I was a candidate for the lumbar puncture test and subsequent treatments.

    Before the LP with Dr. Gray, her PA spent a lot of time with me thoroughly explaining all the possible scenarios and corresponding treatments. Then Dr. Gray performed the LP and measured my opening pressure, which was 17.75. To find where my pressure should be, she first added artificial fluid to raise the pressure. I could feel increased pressure in my head and my ears started ringing. So then she removed 15ccs of fluid to decrease my pressure and my head cleared up. At first, the changes were somewhat subtle, but still noticeable. The improvement became more apparent after I was able to get up and move around again a few hours later.

    The next day I started taking Diamox, which slows down your spinal fluid production. We had to experiment to find the right dose. Diamox works very quickly (unlike Dyazide, an entirely different diuretic). I started out at 250mg x 1/day and gradually worked my way up to 1000mg (500mg x 2/day). I am not 100% symptom free (yet), but I have regained so much in terms of quality of life that I wasn't able to do before.

    It is not clear what is causing the high pressure nor whether it is from me making too much fluid or not draining it well enough, but at least they know enough to more effectively provide symptomatic relief. I'll take that any day after suffering for so long! :)

    My experience with everyone at Duke was very positive. The doctors there showed genuine concern for my welfare as a patient and made me very comfortable throughout the process. They are not afraid to take on dizzy patients and try something new if they think it will help.

    Dan
     
  7. james

    james ''Everywhere I go there I am'' GS

    Thanks so much Dan for posting info about this I appreciate your sharing all the details with us!
     
  8. goofygirl

    goofygirl WDE!!!

    This is sooo interesting!!!
     
  9. Intrepid

    Intrepid New Member

    I agree. This is some mighty fine work and the effects seem to be so immediate. Keep us posted.
     
  10. Titus

    Titus New Member

    This thread is of interest to me because I've had some tests that concluded that I had no compensation from my brain for the vestibular "damage." I was also dx with MAV and cervicogenic vertigo as well as mm.

    Thank you for posting this info.
     
  11. otter95

    otter95 New Member

    Yes, that it was what I have too. If you have one good ear, your brain can compensate. If both are bad, then it's hard to get any good signals. One thing they did mention to me that helps in cases likes ours is vestibular therapy. That is something I may consider down the road. Right now, I am focusing on keeping my spinal fluid pressure under control.
     
  12. goofygirl

    goofygirl WDE!!!

    My vestibular therapist is wonderful, so when you get ready, it's something I would recommend. The thing about him that is helping me more, is that his field deals with your system functioning better in the real world situations we all have to deal with. Drs don't have as much time,they mainly diagnose you and don't seem to have the same "handle" on what your problems are in dealing with your vestibular damage. Mine also explained more clearly in practical terms, all the physical side effects that come with this,including "brain fog" to better help you understand and deal with them.

    He is also very up front with me about this not being a "cure", the exercises will not prevent my having an attack,but it better helps the "visual" part of your balance system to compensate for your damage. This helps condition your body,so that when you have an attack, your vision is quicker to take over, and minimize some of your symptoms.
     
  13. otter95

    otter95 New Member

    That is interesting about vestibular therapy. I suspect I would benefit greatly from that as well once I have my pressure level better stabilized. Right now, it's hard tell how much is actual vestibular damage and how much is merely interference from the excess pressure. I tend to feel a lot more stable when the pressure is normalized, but I probably do have some damage. Where do you go for vestibular therapy? It sounds like yours is separate from an ENT clinic. I thought they were typically located there.
     
  14. goofygirl

    goofygirl WDE!!!

    Otter,
    Mine is in the ENT suite, but aside from the Dr referring me, it isn't really "connected" per say..he has his own assistants, appointment secretary,billing, etc...he also did a lot of my original diagnostic tests,ENG,VNG,rotational test and platform posturography. Chris has a 4 year degree in physical therapy as well as 2 additional years in dizziness disorders from a program approved by the American Academy of Otolarygology..he actually seemed a little more knowledgable about new theories and knew what I was talking about when I said I was on anti-virals and JOH regimen. Like I said earlier, his is a more practical approach, which if your like me is what I want..yes it'd be nice to know "why" this is happening, but he deals with the results, whatever the cause of your vestibular problems.
     
  15. 1artsychick

    1artsychick New Member

    Hi,
    I know I'm not on here very often, and the last few times I've been on was to say how great I was doing after the CSF patches.
    From January - June I was great. No vertigo. Then in June my hearing dropped in my left ear (I am bilateral)
    then by July I was having vertigo.
    On July 7th, Aug. 22, and Oct. 19 I've been back in to see Dr. Gray and had patches done. She thinks that my pressure may be rising too high and then I have a blow out then she sees me and my pressure is low, she fixes it...and the cycle continues.

    I've been home/bed bound since July. The migraines and vertigo are unrelenting. Luckily, most of the vertigo is not the gut retching for hours kind (sometimes it is.) The last 4 days...today is better...I had almost constant vertigo. Some of the time if I kept my head straight and still it would level off to a bearable state, but if I had to move...and of course I had GI issues at the same time, so I had to move....the vertigo would go wild again. The disequilibrium all the time is debilitating enough.

    I just wanted people to know that I have had a relapse. And they aren't too sure how to fix it.
    I'll be seeing Dr. Kaylie next week to discuss other possible treatments, I see Dr. Gray on the 5th.

    I don't know what is going to happen, but I need some relief.

    I hope everyone else who is involved in this research is doing well.

    wendy
     
  16. hollymm

    hollymm Me, 'in' a tree.

    I hope they can find a longer fix for you. I'm so sorry your remission didn't last longer. Maybe this time it will. Good luck and let us know how you're doing.
     
  17. bulldogs

    bulldogs New Member

    My dear friend Wendy, good to see you again.

    I am praying for you, hopefully you find answers.


    God bless
    Joe.
     
  18. otter95

    otter95 New Member

    Wendy,

    I am sorry haven't gone as well for you as they did in the first few months. Hang in there and Dr. Kaylie and Dr. Gray will find a way to bring longer term relief for you. They are both awesome doctors.

    Based on Wendy's experience as well as my own participating in this study, I think this is a good word of caution to those who are following along. It is still very much a work in progress. I too had significant improvement in the first couple of months, but have struggled back and forth since then. I will feel good for a couple of weeks, then slip back to feeling bad again for a couple of weeks, and so on. I am going to a neurologist for further evaluation, but may end up needing a lumboperitioneal shunt with a pressure valve for better long term relief. They are definitely onto something with connection to CSF pressure though.

    Dan
     
  19. Wylee

    Wylee New Member

    The research is now complete. The Docs will be making their presentation at the Spring meeting of the American Neurotolgy Society on April 21, 2012.
    Below is the abstract:

    Cerebrospinal Fluid Pressure Abnormalities as a Cause of
    Chronic Subjective Vertigo with Migraine or Head Pressure
    H. Wolfgang Beumer, MD; David M. Kaylie, MD
    Linda Gray, MD; Peter Kranz, MD
    Objective: The normal range of CSF pressure is poorly defined. Abnormal pressure for some may be
    normal for others. The objective is to determine if altering the CSF pressure in patients within “normal”
    range can relieve symptoms of chronic subjective vertigo with migraine headache or head pressure, with
    or without other otologic complaints
    Study Design: Prospective, IRB approved study
    Setting: Tertiary center
    Patients: Patients with chronic subjective vertigo, migraine or head pressure, with or without other
    otologic
    complaints and clouded mentation
    Intervention: Diagnostic lumbar puncture with opening pressure measurement and addition or removal
    of CSF
    Outcome measure: Self-reported symptom score immediately after lumbar puncture
    Results: 46 patients met entrance criteria. Average opening pressure was 270 mmH20 ranging from 110
    to 265mmH20. 27 patients had immediate symptom improvement with removal of CSF - opening
    pressure for this group averaged 217mmH20. Eight had complete resolution of symptoms, 14 had
    significant improvement and 5 had mild improvement. Eleven patients had improvement with addition of
    CSF, 3 with complete resolution of symptoms, 4 with significant improvement and 3 with mild
    improvement with CSF pressure averaging 157mmH20. The opening pressure was significantly higher in
    group that improved with CSF removal. Eight patients had no improvement with addition or removal of
    CSF. 7 reported no change, one reported significant worsening.
    Conclusion: Chronic subjective vertigo with migraine or head pressure, clouded mentation with or
    without other otologic complaints is often caused by abnormal CSF pressure. Removing or adding CSF in
    many of these patients provided immediate relief of their symptoms. Lumbar puncture should be
    considered in these patients.
    Define Professional Practice Gap & Educational Need: Lack of contemporary knowledge of treatment
    for chronic subjective vertigo and migraine headache leads to many patients receiving suboptimal care
    Learning Objective: To learn about potential causes of chronic subjective vertigo with migraine and how
    to treat it
    Desired Result: Attendees will be able to apply the knowledge they gain in the treatment of patients with
    chronic subjective vertigo
    IRB or IACUC Approval: yes
     

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