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Cochlear Hydrops Treatment/Specialist - Suggestions?

Discussion in 'Your Living Room' started by Kurtin, Aug 7, 2022.

  1. Kurtin

    Kurtin New Member

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    New to the forum after reading about all of your experiences for the better part of a year. Thanks to all of you for all your insight and knowledge. Apologies for the length of this to start, but am really hoping some of my situation and experiences resonate with someone who may have some additional thoughts/guidance/encouragement.

    About 2 and 1/2 years ago after a flight I had what I thought was just a Eustachian Tube type of blockage. It came and went a bit over the course of the next year and a half. At first it was present some days then gone others, then more like weeks on and off. Starting in the Summer of 2021 it become more frequent where we were about a month on and a month off. My primary feeling is of aural fullness almost like a heavy drape was hung in front of my one ear. I started going to a Neurotologist about a year ago and they didn't really have any idea and tried me on some OTC supplements, but nothing really helped. MRI and CT scans didn't show anything abnormal in summer and fall of 2021, respectively.

    Then, October and November of 2021 were really full in my ear...fuller than other times I'd experienced. I did have a vertigo attack Thanksgiving 2021 that was fairly short and the only one I've had. That made me think of Meniere's Disease as a possibility based on things I read. A second opinion with an ENT diagnosed with probable Meniere's but no adjustments. I immediately dramatically changed my diet to low sodium and started reading a bit about JOH thanks to this forum. I asked my Neurotologist in early 2022 about AV and he gave me a short course (about 5 or 6 weeks total..mostly and 1 a day only) of Famciclovir 500 mg, but tapered it down fairly quickly. That did seem to help some at the time, but Neuro wasn't willing to go additionally with the AV treatment at that point. I should note that my hearing loss had improved quite a bit from July 2021 to February 2022 in the mid range frequencies, a little in the lower frequencies, but was worse in the higher frequencies. I also have had steroid injections in my ear 3 times February - April 2022, one each month. It helped a little for a week or so each time, but then back to where it was. I started JOH Lysine, Lemon Bioflavinoid, Vitamin C Sustained Release, Vitamin B12, Vitamin D3 in February and have been faithful ongoing with that. Not too much of a change in my condition, though. Thankfully no additional vertigo attacks, but lots of fullness....nearly all the time, but I do seem to get what I call a "break" here and there where I'll have a day or two that is seems to pop open and no more fullness. Hearing loss still present, but relief from the fullness seems to make it a bit more tolerable when those all too infrequent days come.

    May and June of this year I did seek out Upper Cervical Chiropractic care and some acupuncture. I was out of alignment in C1 and C2, and that has been corrected, but no real change in how things are going in terms of relief or hearing improvement. Chiropractor suggested TMJ issue, but primary dentist did a quick check and didn't think so. Uncertain, though. Since June I've also eliminated all gluten, almost all grains, really watching sugar and fructose as well, eliminated dairy. Intermittent elimination of eggs, but have reintroduced those more recently.

    Finally got back into the Neurotologist in July and requested to go back on a fuller course of Famciclovir again at 500 mg based on Dr. Dereberry and Dr. Gacek's work. Been on that 2 full weeks at this point at 3 times per day. Continuing with JOH Lysine, Sustained Release Vit C, Vitamin D3, Vitamin B12, Magnesium, just starting to add Vinpocetine, and tiny amounts of Lauricidin (only up to 7 pellet/day so far, but got a bit dizzy at first so going low and slow like it says). I'm wondering what role the Vinpocetine and Lauricidin may add to what I've already been doing to open my ear up and further address this potential virus. I am scheduled to lower Famciclovir to 2 doses a day starting next week, but think it may be too soon. I am seeing some improvement from about the 40-50 dcb loss in the mid ranges up to the 30-35ish range when I self check. The lower ranges have gone from 50 dcb to about 40 dcb in that time and the higher frequencies have stayed down in the 50-65 dcb loss range. So, not much improvement...but a little in 2 weeks. Thoughts on appealing for a longer course of Famciclovir at the higher dose, and if so how long at 3 a day? I also have Camber as my mfg. and some have said it isn't so great. I've checked with my local pharmacies. I can get Northstar Valacyclovir, but not Famciclovir from any other than Camber. Thoughts of making that switch to Northstar Val or staying with Famciclovir since I'm seeing a tiny bit of improvement...albeit much slower than back in January? I'm also wondering if I may be too late regarding the whole AV approach since I'm 2 1/2 years from the very start to be able to see much in the way of hearing improvement or getting this under control. Note that mid-April till now, though, have been mostly 'full' days.

    Additionally I have never been on any diuretics this whole time. I've asked a couple of times, but since my sodium is below 1000 mg. every day none of the doctors have been so inclined. They are also a little concerned because I've dropped 70 lbs. in the last 2 years and gone off all blood pressure meds due to light headedness when on them and I have a history of gout for which I see a Rheumatologist (Gout and diuretics don't mix well). If it is Cochlear Hydrops (CH) I'm wondering about Diazide or Diamox. Thoughts?

    Still experiencing lots of distorting aural fullness and some tinnitus (but that isn't really that bad). Another phenomenon with this that I've noticed is that I have tried to do the valsalva maneuver (many times) and it's like my ear wants to open or I can adjust my pressure from my mouth and nose by blowing out and it's like my ear wants to open, but then it slips back into the closed position again and won't stay open...fullness continues. It's going to sound strange, but when I internally burp there is this banging noise against what seems to be my bad inner ear/eardrum. 2 ENT's and the Neurotologist say no Eust. Tube dysfunction. Still no real diagnosis per se other than my conclusion on the order of Cochlear Hydrops. Neurtologist is open to me getting another opinion because he doesn't know where to go next.

    Anyone have any take on my whole ear seeming to try to open, but never wants to stay and slips back to a closed spot? Trying to decide if that area may be where some virus is located, if there may be some Typanic Tensor Syndrome thing possibly going on as well, or just the nature of CH. I'm finding the doctors here don't seem to know much about any of this type of thing after consulting with 3.

    My GP really wants me to add SSRI Sertraline because he thinks it is all stress related. I don't question the role stress is probably playing, but don't know if that is most critical at this point with trying to add these other AV pieces. He thinks the AV route is placebo effect if anything, but didn't discourage me.

    I'm in the Michigan, Ohio, Indiana, Illinois area. Any thoughts on good doctors that are more aware of CH or Meniere's and effective treatments more in line with AV type work? Trying to get rid of this fullness and save what hearing I can. So thankful for not having the spins that so many of you have, but the constant fullness and unknown of this whole thing along with the hearing loss plays mind games. Keep trying to be optimistic, but (as you all know) it is hard. Thankfully this isn't bilateral and only affecting one ear so far.

    One thought was Cleveland Clinic, Michigan or Indiana University or even Mayo Clinic, but I'm not sure which (if any of those) is my best choice or if they are strictly a more 'traditional' approach. I'd be even willing to travel some distance for someone really good with our issues and could maybe help make a difference.

    Sorry this is so long. Any thoughts from your personal experiences related to this are welcome.
     
  2. Kevinb003

    Kevinb003 Active Member

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    Michigan Ear Institute, they are great, went there for six years before moving to the Southwest.
     
  3. Tony Wilson

    Tony Wilson Member

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    Agreed, I go to MEI as well and love Dr Babu. You may not get a solution to what you’re experiencing but they understand MD and will provide guidance
     
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  4. Kurtin

    Kurtin New Member

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    Any thoughts from either of you or others about switching AV from Camber Famciclovir 500 mg 3 times a day to Northstar Valacyclovir 1000 mg. 3 times per day? Had pretty good experience with Famciclovir back in January, but doesn't seem to be working as well this go around. I have had chronic fullness, though, for the past 3 months or so. I know Dr. Gacek's papers indicated that Famciclovir is more bioavailable which is why I chose it, but I've since noticed others indicating that Camber wasn't as good and had better luck with Northstar brands. No luck finding Northstar Famciclovir, but I can get Northstar Valacyclovir. I'm only about 2 weeks in with Famciclovir 3 times a day this go around, plus JOH regime of Lysine, Vitamin C, Vitamin D3, Vitamin B12, just starting Vinpocetine and Lauricidin. How beneficial have others found the full adding of Ginkgo, Vitamin E and MSM to the regimine especially with my nearly constant aural fullness? Haven't added those yet.

    Thanks Kevin and Tony for your earlier responses. Getting an appointment at MEI.
     
  5. Kevinb003

    Kevinb003 Active Member

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    Dr Babu was my oto also. Did a lot for me and had great experience with MD.
     
  6. Kurtin

    Kurtin New Member

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    Thanks again. Question: Is he open to JOH and Antiviral treatments or does he not believe in that (from your recollection)?
     
  7. Kevinb003

    Kevinb003 Active Member

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    This was 11 years ago and I was not aware of the antiviral connection at that time so I never asked. In my experience, though, he was an advocate and would do/try whatever I asked about. I think any dr. who would deny an MD patient a relatively safe drug like antivirals is a discredit to their profession.
     
  8. Shotguncoach

    Shotguncoach New Member

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    Anyone know of any good DR's in Austin, TX or Texas for that matter that are in the know about MD ?

    DL
     
  9. Kevinb003

    Kevinb003 Active Member

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    Dallas Ear Institute. Treated for many years there by Dr. Hahn.
     
    • Like Like x 1
  10. Shotguncoach

    Shotguncoach New Member

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    Thanks !
     
    • Like Like x 1
  11. sirenblood

    sirenblood New Member

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  12. Shotguncoach

    Shotguncoach New Member

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    My journey started 6-9 months ago... 3 really bad episodes. Went to ENT and had MRI and hearing test and they to Balance360 in Austin which told me to switch to a low sodium diet and do a few exercises which didn't help. I personally figured out it was linked to being dehydrated and have been ok until 2-3 weeks ago when symptoms came back in a big way. I've dropped all coffee and tea which I'm addicted too and drink tons of it. Was already on decaf for 5+ years on the coffee. I'm basically drinking a gallon of water per day which is work. Started L-Lysine yesterday and trying to have a telemed appt with Dr. Babu next week. Don
     
  13. Kurtin

    Kurtin New Member

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    Thanks for asking. No significant change so far. 3 weeks in on Famciclovir 500 mg. 3x/day; Full JOH for about 3 weeks; Lauricidin 1/4 tsp. 3x/day; B12; Magnesium Glycinate 400mg/day; Vitamin D3 6000-8000 units a day.

    Aural fullness still very present all the time; Since the 3 weeks on Famciclovir about 10-15 db hearing improvement in lower and mid-range frequencies but not much change for the better really in the last two weeks. Related tinnitus and fullness seem to be affected by movements in jaw and times with my attempts to get the ear to be more open through quick exhale bursts (somewhat like valsalva maneuver). My ear acts like it would like to open, but then remains in an in between state and the seems to slide back shut again and the cycle like that continues throughout the day. Very frustrating.

    Anyone else experience this type of aural fullness or do others just feel completely full all the time with my probable CH? The constant fullness, at least for me, is mentally exhausting and the imbalance between the two ears (good ear is fine) is frustrating as well.

    I hope others are finding things that provide relief. Any additional thoughts from all of you fellow warriors are welcome.
     
  14. sirenblood

    sirenblood New Member

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    Meditation is reported to reduce stress, tension and boost immune system. I'm trying since no medication seems temporary.
     
  15. Al DM

    Al DM Member

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    I sometimes get that feeling that my ear is opening, but it's brief and then seems to close up quickly again. It tends to happen in strange circumstances, like yawning on a flight for instance (maybe something to do with the low cabin pressure?).

    Anyway, what I wanted to ask was what are you using for your self done hearing tests? Presumably a phone app and a pair of headphones? I would be interested in keeping track of my fluctuating hearing, so any pointers you can share would be appreciated.
     
  16. Kurtin

    Kurtin New Member

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    I have been using the site hearingtest.online It isn't something you can really keep historical data on unless you print it out (which is what I do), but it is fast and gives me at least an idea of how things are going.
     
  17. Al DM

    Al DM Member

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    Thanks - will check it out.
     
  18. Kurtin

    Kurtin New Member

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    Advice welcome regarding setback....Update: I have been on full JOH since July 2022 (4 full months), AV treatment (Famciclovir 500 mg 3x/day first 2 months, Valacyclovir 1000 mg 3x/day past 2 months), Full dose 3x/day Monolaurin (Lauricidin), 8 mg 3x/day of Betahistine, Diazide 1x/day for 2 months. Saw some improvement in August, September and October with Famciclovir (switched to Valacyclovir in September because 2 different doctors said they thought it would be better) and other treatments but manipulatable middle ear fullness/adjustable tinnitus still an issue the whole time (pretty much since April 2022), but about 3 weeks ago everything seemed to 'fill up' again and has been fuller ever since. Continue strick low sodium, lesser carb/sugar diet, high water intake, daily exercise. No caffeine, gluten, or dairy. Self check with Audiogram online shows I'm right back where I started in July 2022 but still on full treatment protocols. Thankfully still no drop/full on vertigo attacks like others have, but a number of lightheaded/dizzier days. I have been busier the past few weeks so wondering about addition stress component.
    Questions:
    1. Thoughts on switching back to Famciclovir as that is one thing that did change over time? Other AV (or similar) thoughts?
    2. Anyone have successful treatment for Stress Management that has effectively worked in related to your Meniere's Disease (medication, meditation, etc.)?
    3. Doctor suggesting ventilation tube to see if that might help. Anyone else have experience with that helping?
    4. Doctor also suggesting Diamox instead of Diazide as he says Diazide (prescribed by a different provider) doesn't have much success in Meniere's treatment. Any success stories with Diamox?
    Scheduled for full Vestibular Testing (never had it before) early next week. Any suggestions greatly appreciated.
     
  19. Ssu11321

    Ssu11321 New Member

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  20. Kurtin

    Kurtin New Member

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    I think you may have wanted this on this part of the forum so I'm going to copy and respond here. Have you tried any of the JOH or Antiviral approaches? Did they help at all? I have read this article MIDDLE EAR MUSCLE DYSFUNCTION AS THE CAUSE OF MENIERE’S DISEASE (posted previously on the forum by others) about Middle Ear Dysfunction as a potential cause. I've talked about it with some of the providers I've seen, but they don't seem to think this to be the case. I, too, have seen a number of providers with more new ones coming up to see if there is anything that can be done to help. It sounds like your pressure situation is worse than mine at this point, but it is affecting my ability to function day to day(including my hearing) as well. In addition to my previous post I do have to wonder about the role of stress on all of this as well and whether any treatments (pharmaceutical or otherwise) could be of help. Mine, too, never lets up and the fullness/pressure is there full-on every day.
     

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