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Drop attacks

Discussion in 'Your Living Room' started by Claybustr, Sep 2, 2019.

  1. Claybustr

    Claybustr New Member

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    I e been successfully treating my meniers with JOH for about a year and my life has been, for the most part, normal. However, twice in the past 8 days I have experienced what must be drop attacks. I feel like I’m being thrown to the ground. I’m going to cut out all caffeine and alcohol and reduce my sodium intake.

    Thoughts? JOH has worked well for me. I’m hoping I just got a little too relaxed and careless. Both attacks occurred after I had several beers the night before.
     
  2. Claybustr

    Claybustr New Member

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    Thanks for the reply.

    I am currently only taking Lysine 1000mg 3x daily. But, I am going to add OLE starting tomorrow. If I am reading correctly it may also benefit as an antifungal. I’m also going to schedule another appointment with my doc, or look again for one in Indianapolis that seems to understand menier’s.

    I’ve hit my head pretty hard the last 2 DAs so I’m getting stressed about even walking now. A week ago I fell and did serious damage to my right hand resulting in surgery. The antibiotics more than likely killed anything in my body that was fighting candida.
     
  3. June-

    June- Well-Known Member

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    Clay, is your Menieres unilateral? Have you talked to a dr about surgery? Everyone has to make their own decision about these things but for me, if i had mm in one ear and was having drop attacks, i would look at surgery with a dr who is very experienced in this kind of surgery rather than put my life at risk. Antivirals might still be useful down the road to prevent the other ear being similarly affected but drop attack i think are hard to stop.

    FWIW, i have had only one functioning hearing and balance nerve for 22 years and it is not a big deal. Just means if the other is affected down the road you have to get right on the case. Good luck.
     
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  4. Bonlyn

    Bonlyn Active Member

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    Hi Claybustr,

    Sorry you are feeling so poorly. I hope you can find the right combination to put you in a long remission soon.

    Not sure if you are going to stop taking the lysine and start taking the OLE, but just in case you are going to take them TOGETHER, if you have not already read the post made by JOH on February 13, 2018 , read it. I think he says the lysine negates the OLE.

    Best to you - Bonnie
     
  5. Claybustr

    Claybustr New Member

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    Thanks June. I honestly haven't found a doctor in Indianapolis that I completely trust. Midwest Ear Institute is the only resource I can find that seems to have a clue. Honestly, at this point I would consider Gent or surgery. But I need to find someone to work with that I trust.
     
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  6. Bonlyn

    Bonlyn Active Member

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    Oh that is good to know. Can you link me to that.? The last post I read from John himself about the interaction on Feb 13, 2018 he seems to imply not to take them together. It is easy to sometimes miss a post , so thankful if you could direct me.
     
  7. Claybustr

    Claybustr New Member

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    This is the only info I was able to find on taking the two together. I may pm Jon and see if this is still current info.

    erikdahlstrand said:
    Hi John and thank you! Is it meaningful to take both L-Lysine and OLE? In this post you´re saying " they cancel each other out".

    http://www.menieres.org/forum/index.php/topic,37166.msg765329.html#msg765329
    WHOA!

    I posted that about four years ago, forgot it entirely.

    Don't take OLE and lysine together, meaning, during the same course of treatment, not just at different times of the day.

    Lysine binds to enzymes required for herpes virus replication. That's how it works against Meniere's.

    But there is evidence that it also can bind to or disable the elenolic acid in OLE. With that, the OLE can't go on to disable the virus.

    Thanks so much for posting this earlier information. Hope everyone using both lysine and OLE can find it. My error in not recalling and re-posting it.

    If combatting Meniere's with my regimen, with lysine, don't disable it with olive leaf extract.

    But if my regimen or other treatments have brought no relief, give OLE, alone, a try. Worth a try.

    --John of Ohio
     
  8. June-

    June- Well-Known Member

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    Yes, that is important. Keep looking and dont rule out traveling if necessary.
     
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  9. AnneT

    AnneT Well-Known Member

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    Drop attacks are what convinced me to move on from pills and supplements. I knew I couldn’t drive until I had reasonable assurance that they were gone.

    I was keen to have a laby - 100% effective against Menieres vertigo attacks. My doctor had me do the gentamicin injections - 93% effective and usually spares hearing. The procedure was relatively easy. The balance stuff afterwards was difficult, but NOTHING compared to living with vertigo attacks.

    So far so good.

    I’d suggest, if I may, at least get a referral for a doctor who does these procedures. There may be a waitlist. Or, if you get seen quickly, there’s no harm in talking and gathering info, see if you feel comfortable with them.
     
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  10. Raider Nation

    Raider Nation New Member

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    So Calybustr says in his post that had these attacks after drinking several beers. Does anyone on here consume alcohol and not have any problems with it? Every time I think I will try and have a beer, I read something like this and then I get to scared to try.
     
  11. BillBo

    BillBo New Member

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    uhhhh yeah..NOT 100% effective for a laby. Lordy. Please never say that again. are we on planet earth?

    and to raider Nation: first... we finally have a chance to break 500... thank god for receivers! Vegas baby!
    second--- your alcohol reaction I feel depends on your level of treatment. the better I got the less alcohol affected me. I dont drink much but i do drink.
     
  12. Clare

    Clare Active Member

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    Huh? If done correctly, laby surgery is like a roto-rooter that destroys the hair cells in the inner ear. In Meniere's, it's those hair cells that are slowly dying and are giving random signals to the nerve, and that misfiring to the brain is what causes the vertigo. Why wouldn't a laby be 100% successful against vertigo for single-sided Meniere's?
     
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  13. BillBo

    BillBo New Member

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    'If done correctly'....is this like a 60% of the time its 100% effective kind of thing? How bout some research that show those results. I have read lots of people who got them and still have vertigo. Not to mention they will never hear again out of that ear. Just let me see that 100% success rate research....
     
  14. PleaseNoDizzy

    PleaseNoDizzy Active Member

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    No, nothing like 60%. I think the vast majority of labys are performed "correctly" and it's a teeny-tiny chance they miss something and it's not "complete". If that's even possible. Yes, it's a certainty they will never have hearing in that ear again.

    I don't know about "lots of people" having vertigo post-laby, but my guess on that is that those folks were either misdiagnosed or have a concurrent illness, like MAV, that is giving them vertigo. It's not that the laby didn't do its job.
     
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  15. BillBo

    BillBo New Member

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    Ok I hear your opinion...(and your 2 other profiles)...appreciated. getting confused who I am talking to... but I kinda like that whole proof thing. Anyway, I am new having read about this site on FB. and I just started antivirals myself. I think thats my route as it seems far safer and affordable. I have not been doing all that I see posted though. Looks like I can do a lot more to treat myself. Like the buster of Clay I have a candida issue too. Been wondering how much that is affecting my symptoms.
     
  16. Autumninthefall

    Autumninthefall Active Member

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    Last I checked, we're here to be supportive to each other. NOTHING is 100%. If you want to find 100% I encourage you to scour PubMed for a meta-analysis of double-blind, randomized, placebo-controlled, peer reviewed studies, published within the last five years, comparing longitudinal drop attack treatment outcomes. I'll wait..
     
  17. AnneT

    AnneT Well-Known Member

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    Here's a small study with "complete resolution of vertigo" after laby:

    J Laryngol Otol. 2016 Feb;130(2):204-6. doi: 10.1017/S0022215115003345. Epub 2015 Dec 17.
    Simultaneous cochlear implantation and labyrinthectomy for advanced Ménière's disease.
    Heywood RL1, Atlas MD1.
    Author information
    1
    Sir Charles Gairdner Hospital,Perth,Australia.
    Abstract
    BACKGROUND:
    Patients with Ménière's disease can develop unaidable sensorineural hearing loss. Cochlear implantation has recently been utilised in this group with favourable results. A more challenging group are those with intractable vertigo, and they have traditionally posed a significant management dilemma.

    CASE REPORT:
    Two female patients with unaidable hearing and recurrent incapacitating vertigo attacks despite conservative management underwent simultaneous labyrinthectomy and cochlear implantation. There was complete resolution of vertigo in both patients. Speech perception in quiet conditions and the ability to hear in background noise improved considerably.

    CONCLUSION:
    Surgical labyrinthectomy is effective for the elimination of vertigo in Ménière's disease patients. The major disadvantage in the past was loss of residual hearing. Cochlear implantation is now an option in these patients. The benefits of simultaneous labyrinthectomy with cochlear implantation include the prevention of implantation of a fibrosed or ossified cochlea, a decrease in the duration of deafness, and a single operative procedure.
     
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  18. AnneT

    AnneT Well-Known Member

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    And another one, claiming 100% effectiveness of VN and labyrinthectomy (LC):

    Lin Chung Er Bi Yan Hou Tou Jing Wai Ke Za Zhi. 2019 Jun;33(6):501-504. doi: 10.13201/j.issn.1001-1781.2019.06.006.
    [The effect of surgical treatment on Meniere's disease].
    [Article in Chinese; Abstract available in Chinese from the publisher]
    Yu HR1, Yang J1, Zhou X2.
    Author information
    1
    Department of Otolaryngology Head and Neck Surgery, Xinhua Hospital Affiliated to Shanghai Jiaotong University School of Medicine; Institute of Ophthalmology, School of Medicine, Shanghai Jiaotong University; Shanghai key Laboratory of Ear and Nose Disease Transformation, Shanghai, 200092, China.
    2
    Clinical Research Unit, Xinhua Hospital Affiliated to Shanghai Jiaotong University School of Medicine.
    Abstract
    in English, Chinese
    Objective:To compare functional outcomes after different surgical procedures in treatment of patients with Meniere's disease. Method:Patients with Meniere's disease were categorized into different groups mainly based on pure-tone average and functional level scale. Individualized surgical procedure was provided including endolymphatic sac shunt or decompression (ELSS), vestibular neurectomy (VN), labyrinthectomy (LC), semicircular canals plugging (SCP) and endolymphatic duct blockage (EDB). Result:Vertigo control rate of Grade A and B was 78.4% in patients with ELSS, 100.0% with VN, 100.0% with LC, 87.0% with SCP and 86.4% with EDB, respectively. Hearing was preserved with ELSS, VN and EDB postoperatively (P>0.05). But there was a significant hearing loss after SCP (P<0.05). Postoperatively, the QOL score improved significantly in each group (P<0.01). There were CSF leakage in 4 cases, temporary facial paralysis in 1 case, intracranial infection in 1 case, and abdominal hematoma in 5 cases in VN group after surgeries. None of the above complications occurred in other groups. Conclusion:Surgical Treatment choice for patients with Meniere's disease depends on several factors. The functional outcomes after different surgeries are generally satisfying. Residual hearing can be preserved effectively and the quality of life can be improved greatly. VN can effectively eradicate vertigo and preserve residual hearing, however, there is still a risk of some complications with this procedure. As for VN, retrolabyrinthine approach is more advantageous compared with retrosigmoid sinus approach.

    Copyright© by the Editorial Department of Journal of Clinical Otorhinolaryngology Head and Neck Surgery.
     
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  19. AnneT

    AnneT Well-Known Member

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    Slightly off topic, but interesting... Quality of Life Scores improve about the same, regardless of procedure/surgery chosen. These guys looked at and compiled 148 studies.

    Otolaryngol Head Neck Surg. 2019 Feb;160(2):232-238. doi: 10.1177/0194599818803612. Epub 2018 Oct 9.
    Quality-of-Life Outcomes following Surgical Treatment of Ménière's Disease: A Systematic Review and Meta-analysis.
    Ballard DP1, Sukato DC1, Timashpolsky A1, Babu SC2, Rosenfeld RM1, Hanson M1.
    Author information
    1
    1 State University of New York, Downstate Medical Center, Brooklyn, New York, USA.
    2
    2 Michigan Ear Institute, Farmington Hills, Michigan, USA.
    Abstract
    OBJECTIVE:
    Several surgical interventions are offered to patients with Ménière's disease (MD) who fail medical management. Although outcomes have historically been reported according to American Academy of Otolaryngology-Head and Neck Surgery guidelines, patient-reported outcome measures (PROMs) are increasingly used to evaluate treatments. This study reviews PROMs used to assess surgical treatments for MD and compares the effect of each intervention based on PROM scores.

    DATA SOURCES:
    PubMed, EMBASE, CINAHL, and Web of Science.

    REVIEW METHODS:
    This is a systematic review and meta-analysis of English-language studies that reported PROMs for surgical treatments of MD. Two independent investigators assessed study eligibility, rated the quality using Methodological Index for Non-Randomized Studies (MINORS), and abstracted data for comparative analysis. A random-effects model was used for meta-analysis of pooled data.

    RESULTS:
    Of 148 unique studies identified, 11 satisfied inclusion criteria. The Ménière's Disease Outcome Questionnaire (MDOQ) was the most commonly used survey. Interventions included intratympanic gentamicin, vestibular nerve section, endolymphatic sac surgery, and labyrinthectomy. Pooled analysis of 8 studies that used the MDOQ instrument demonstrated statistically significant improvements in quality of life but did not identify a difference between destructive and nondestructive procedures.

    CONCLUSION:
    Although our review shows significant improvements in PROM scores for both destructive and nondestructive interventions, there was no significant difference noted between treatment types. We cannot draw conclusions regarding the comparative effectiveness of specific interventions, and the results do not account for placebo effects or the natural history of the disease. Further investigation with randomized controlled trials should be considered in future studies.
     
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  20. AnneT

    AnneT Well-Known Member

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    And since this thread is about drop attacks - here's one citing excellent results with gentamicin:

    Laryngoscope. 2014 Sep;124(9):2151-4. doi: 10.1002/lary.24716. Epub 2014 Apr 29.
    Intratympanic gentamicin as a treatment for drop attacks in patients with Meniere's disease.
    Viana LM1, Bahmad F Jr, Rauch SD.
    Author information
    1
    Department of Otolaryngology, Massachusetts Eye and Ear Infirmary, Boston, Massachusetts, U.S.A; Faculty of Health Sciences, University of Brasilia, Brasilia, Distrito Federal, Brazil.
    Abstract
    OBJECTIVES/HYPOTHESIS:
    Vertigo attacks in most cases of Meniere's disease (MD) are successfully treated with lifestyle changes and medication. However, approximately 6% of patients with MD develop drop attacks (DAs), a potentially life-threatening condition. Traditional treatment for DAs has been surgical labyrinthectomy. The objective of this study was to assess the effectiveness of intratympanic gentamicin for DAs in patients with MD.

    STUDY DESIGN:
    Retrospective charts review.

    METHODS:
    All charts were reviewed from Meniere DA patients at our hospital during the 10-year period from 2002 to 2012 who had been treated with intratympanic gentamicin and had been followed for at least 1 year afterward.

    RESULTS:
    Twenty-four ears fulfilled inclusion criteria. The time for manifestation of DAs varied from 1 to 20 years after diagnosis (mean 10 years). A total of 83.3% of ears with intractable MD and DA achieved complete symptom control of DAs after the first intratympanic gentamicin cycle and 95.8% after the further injections. Among patients with no DA recurrence by the end of the study follow-up, the symptom-free interval varied from 12 to 120 months (mean: 43.5 months). All 15 patients with ≥ 24 months follow-up were still free of DAs. Elevated or absent vestibular evoked myogenic potential thresholds were more common in DA than in contralateral ears, and hearing loss was not a major complication of the treatment.

    CONCLUSION:
    Intratympanic gentamicin treatment appears to be a long-lasting and effective treatment for MD with DAs.

    © 2014 The American Laryngological, Rhinological and Otological Society, Inc.
     
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