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Dr Gacek and Cochlear Hydrops

Discussion in 'Your Living Room' started by Santa, Oct 15, 2014.

  1. Santa

    Santa Member

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    Am I missing something? His reports and studies just seem to be addressing vertigo. I am hoping for relief from Aural Fullness and tinnitus. I don't see where he is addressing that. If you see it please point it out to me.

    I have asked my Dr. for a prescription for valcyclovir and they are wrote a small one and sent it in. Mostly so we can see what my co-pay will be.

    If the acyclovir or valacyclovir is only to help with the vertigo, then I am fine with the acyclovir. I need help with the Aural Fullness and tinnitus.

    I am taking the lysine, the Natures Life Lemon Bioflavanoids, vinpocetine and pine bark extract. And my ear is soooooooooo FFFFuuuuLLLLLLLL.
     
  2. RedBird11

    RedBird11 Member

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    I am going to follow this thread, because I am right there with you. My ear has been SO full lately. Yesterday I could have sworn my head was about to implode. Its crazy uncomfortable.
     
  3. Vicki

    Vicki Guest

    the avs have shown to help with hearing loss too and many have mentioned their ear clears up and their tinnitus improves while on av's, search the forums for posts that mention that.
     
  4. nicmger

    nicmger Member

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    I would assume (but cant actually speak for Dr Gacek!) that his studies are focused on the vertigo aspect as that is the one most doctors would consider to have the most impact on one's life - the most debilitating aspect.

    I can say that while I have not tried a different antiviral, the valtrex (generic version) has done an amazing job of clearing up the pressure feeling in my ear and the ringing.

    If my mail order pharmacy sourced from the manufacturer that seemed to work best for me, 90 pills of generic valtrex is a $25 co-pacy for me. As it doesn't; and since my insurance requires all ongoing prescriptions to be filled thru mail order...I pay cash. The cost from Costco is about $90; vs Target quoted a cash price of $450!

    Good luck!
     
  5. Hollyflo

    Hollyflo Member

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    I am with you Santa and RedBird11! Vertigo hasn't been my primary issue but the fullness, sound sensitivity, hearing loss and tinnitus do create intense discomfort and a dizziness. My fingers are crossed that the Acyclovir clears our common symptoms up. I also hope it prevents my condition to progress to vertigo which one ENT Dr told me to expect it would :-(

    I am curious how and when would I know whether the Acyclovir is working (or not) and how to go about trying another AV to see if it was just the one vs any working for me? Since the conversation seems to go to vertigo (for good reason) the progress with the other symptoms feels less discussed and far more vague. I will have to have something to sell my case to my MD to try another AV without something to point to. Hope that doesn't need to happen :)

    So far, a week into the Acyclovir, the only change I am noticing is a bit less dizziness which might just be from going off the diurtetic. The fullness, tinnitus and hearing loss is the worse its ever been :-(

    Appreciating the discussion.
     
  6. Vicki

    Vicki Guest

    Holly many get worse before better which shows the AV is doing something.
     
  7. BayMama

    BayMama Member

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    This was the very reason I wrote to Dr. Gacek a few weeks ago. The vertigo I have had is not from MM, but from MAV and BPPV (and now thankfully under control). He saw my combinations of symptoms (hearing loss, especially in the lower range, tinnitus, and fullness of the ear) as signs/symptoms of Menieres. He thought I'd do better with the valacyclovir than the acyclovir. He emphasized how important it was to take the full dose. I had been taking acyclovir at less than the recommended dose, and tapering after less than the recommended time. My improvement was going away, and he thought that was because I wasn't taking enough. That was why I switched to valacyclovir at the recommendations in the paper (http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf, starting at page 103).
     
  8. June-

    June- Well-Known Member

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    I know nothing of Gacek's work but dr derebery's firts study showed more promise with hearing issues. It sure worked for my cochlear hydrops, including a return to a normal range audiogram, complete remission or terrible distortion and tinnitus.
     
  9. Santa

    Santa Member

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    Dr Gacek's summary

    The use of this class of antivirals in the management of recurrent vertigo contrasts with the Disappointing results observed when they were used to treat other viral insults to the labyrinth. The localization of the pathological lesion (sense organ) in sudden sensorineural hearing loss indicates viral entry via the vascular or cerebrospinal pathway rather than intraneural entry. Therefore, it is likely that the virus has left the labyrinth with the clinical presentation of hearing loss, and the goal is to limit or reverse the pathological lesion using steroids.

    Santa says, "Do you think if we are not having vertigo we are now to use steroids?"

    Finally, since the efferent neural system to both the auditory and vestibular sense organs
    travels through the vestibular ganglion [67] , associated symptoms may be relieved with antiviral
    therapy. Tinnitus associated with enhanced otoacoustic emissions due to loss of efferent
    olivocochlear neural activity [67–69] may be relieved with antiviral therapy.


    Santa says," Does this mean there is still hope?"

    Failure to improve hearing loss or relieve tinnitus is dependent on the degeneration of spiral ganglion
    cells or the efferent bundle. Symptoms caused by loss of efferent vestibular system function
    are not known since the function of this component is unknown


    Santa says, "Oops, maybe this means only a shimmer of hope?"
     
  10. Santa

    Santa Member

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    HI June
    I'm sorry to make you repeat this, but it would be nice of you to repeat your experience, again.
    Do you give credit for your experience with the cochlear hydrops clearing up for you to five months of acyclovir?
     
  11. June-

    June- Well-Known Member

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    The fact remains, many people have had their hearing dramatically improved with antivirals. It does not however, happen in a day or week. It takes a while. I am sure there will be people for whom this does not work as well. But no one has the trials and stats to answer the questions you are asking.
     
  12. Vicki

    Vicki Guest

    and as I said many have gotten ear fullness relief and tinnitus relief, read the posts in this thread and search the forums
     
  13. June-

    June- Well-Known Member

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    Santa, here it *all* is. Hopefully something here will be useful to someone.

    It has been 7 years but i will be as precise as my memory allows.

    I developed CH suddenly mid june 2007. I dont know what caused it on that day but several things may have factored into it including 1997 surgery for acoustic neuroma on the other ear, 2006 severe cmv mono, 6 weeks of noise and exposure to all the materials involved in putting an addition on a house. I also quit smoking two weeks earlier before the onset. Finally, i had started using xalatan between the cmv mono and the onset of the hydrops.

    I went to the urgent care the next day because within hours the distortion and hearing loss had become so bad that i could not understand speech on the tv, no matter how high the volume. Since i have only one hearing ear, this constituted a crisis for me. Urgent care dr prescribed prednisone as well as a decongestant. He urged me to see my oto next week if it had not corrected itself. It did not and i went to my oto. He did a hearing test. From the git go, the audiogram seemed to scream menieres to them. I was diagnosed with 'early menieres', later cochlear hydrops. I worked with this nuerotologist and his partner for the next 6 months at which time the dr told me essentially that there was no more they could do for me. My only hope was a cochlear implant at a later date. During this six months, i had tried a second course of prednison, a diuretic, histamine shots, a strict 1300 mg sodium diet and more. Nothing helped. My distortion, tinnitus and hearing loss were with me 24/7 day in and day out. I thought they would drive me crazy, literally. Well one thing helped a tiny bit. That was eliminating caffeine. To this day, it causes me problems and i do not drink any caffeinated beverages unless i feel wicked and drink a diet coke just for spite.

    I tried a daily yoga practice lead by a wonderful teacher. It did not help my hearing at all but calmed me enough to be able to think clearly and communicate calmly with my family dr.

    I began spending more time reading on this board. I read about a half a dozen people on this board having success with acyclovir. I also read about some who benefitted from allergy treatment.

    I talked to my family dr who knew from correspondence that the specialists had given up.

    I mentioned the antiviral thing but told her i was afraid of them and didnt have confidence in them. She looked up acyclovir and said she did not see any reason for concern. She said, 'you know, if a mother has cmv, the baby can be born deaf and said ' i will prescribe them if you want to try them.' I left with the rx but didnt have it filled for 2 weeks because i just felt like it wouldnt work. Finally, at my husband's urging, i filled it. I started taking them. Days 1 and 2 i felt nothing at all. Day 3, my distortion was worse and i almost quit taking them but it was worse in a slightly new way so i kept going. Days 4 and 5, the distortion which had been present every day for 9 months, started to cut in and out. I wasnt sure whether to hope or not. After 6 weeks i judged my symptoms to be about 65% improved and i was frankly ecstatic. I did not even hope for any better. I assumed that was as good as it would get. I quit taking the antivirals. But a few months later in allergy season, things started slipping. Mostly it was a feeling of cartilage swelling in my ear and a kind of echoing of low pitched sounds. It was worse in some locations than others. I didnt know what to do. But also on this board, i had read of dr derebery at house ear in LA who was both an allergist and an oto and who worked with antivirals in MM patients. I wrote her a letter and sent some test results.

    She felt i might benefit from allergy treatment. I flew out to see her, mostly wanting her expertise on antivirals but open to allergy testing. She did two days of allergy testing. When i left, i had an rx for famvir and vials of serum for allergy shots. I took the famvir for 3 months during which my hearing continued to improve. I took weekly allergy shots for 6 years up to and including the present.

    Well within the first year i felt great, the LOUD tinnitus was gone, the horrible horrible distortion was gone, my hearing was better. I did have setbacks though when the symptoms would come back in a minor way. During the first year or maybe two, when i had a setback, i just weathered it and in about six weeks my hearing would recover. Then at some point after talking to Dr Derebery about it, i would take famvir when this happened and things would get better in about a month. Who knows.

    So over time i have taken famvir from time to time but the time it had the most effect for me was the first 4 or 5 months. However, my hearing continued to improve to the point where my audiogram was in the normal range and stayed there from what was previous 40-50 dcb loss. The only part that did not improve was at 8000 htz. The dr told me it rarely does recover in the very high frequencies as this is the most delicate part of the cochlea. I have not suffered tinnitus for probably 6 years. Though with my little setbacks i do sometimes get a little distortion, it is never anything like the original horrible kind.

    I believe - just supposition here and pretty much everyone is just at that stage imo in figuring all this out -even people who speak with great authority -
    I think the antivirals stopped a nasty virus in my inner ear and/or auditory nerve.
    However, at that point it had lived in my ear for at least 9 months and done some real damage. I believe over time without the virus continuing the destruction,the ear began to heal itself as the body is wont to do. I believe the allergy shots took a load off the immune system which was aggravating the whole affair. The allergy shots also corrected some problem in the eustachian tubes which caused pain during descent in airplanes and caused my hearing to be distorted for a couple hours after a flight. Although MM is thought to be all inner ear, in me, the inner and middle ear issues came and went in lockstep.


    I dont delve into too much theory because i think that is more vanity than anything at this state of knowledge. And i dont gild the lily with more stuff. When it comes to putting this kind of stuff in my body, i think less is more.
     
  14. BayMama

    BayMama Member

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    June, thank you for typing all that out. That was interesting. I always assumed our situations were similar since we don't have the MM vertigo, but yours started very differently from mine--much more suddenly. That really sounds terrifying. Mine did have a stage when it nearly drove me crazy, too, so I could relate to that. It is an awful place to be in. Thank goodness you found something that worked, and before you lost much hearing.

    Santa, I hope my reply to you didn't get lost in this thread. I thought it answered your question pretty directly. Here it is again:

     
  15. Santa

    Santa Member

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    Thank you June,

    I very much appreciate your time and devotion to the rest of us on this forum.

    I started eliminating caffeine and alcohol this week. Not drinking alcohol is not as big a deal as the caffeine. I usually have two scoops every morning.
    Each day this week I cut a quarter of a scoop. Today I am only having three quarters of a scoop. No alcohol since Saturday.
     
  16. Santa

    Santa Member

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    Hi BytheBay,

    I wish I was by the Bay this morning. Sure would be nice to put my feet in the water and maybe do some fishing.

    I asked my Dr. for valcyclovir and he called in a prescription for 15 pills. I don't even know what strength. The co-pay is $15

    He had never heard of Dr Gacek. This morning I am taking the info you posted the other day to him and see if he will call in the whole three week protocol and see how much that co-pay will be.
     
  17. rottiesrule

    rottiesrule New Member

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    I got relief from fullness with the lemon bioflavonoids. I started with 4 tabs a day until I felt better. As things progressed I tapered down to one a day, the dose I take now. I too have CH, no vertigo, just that God awful plugged up feeling, diminished hearing when full and tinnitus. To date, still have a high pitched sound 24/7 but no fullness.
     
  18. nicmger

    nicmger Member

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    Ask your pharmacist about the copay - for me I have the same co-pay for 30 pills as I do for 90. That is when the total is over a certain low amount. IF I agreed to have my valtrex generic filled mailorder I would have a 90 day supply with a $25 co pay with my insurance.
     
  19. Santa

    Santa Member

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    I love my Doctor. I gave him a copy of Dr Gacek's work and he wrote a three week prescription. I took the first one tonight.

    I'm still going to take the lysine, lemon bioflavs. pine bark extract and vinpocetine, the vit C and E and MSM.

    Tomorrow only a half scoop of coffee. (pretty scary) I am exercising a lot this week. Seems to help with the caffiene withdrawls.

    My co-pay was $15.
     
  20. nicmger

    nicmger Member

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    Santa, curiosity - which manufacturer does your pharmacy use for the prescription you were given?
     

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