Five years later

Discussion in 'Your Living Room' started by vasu, Mar 29, 2014.

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  1. vasu

    vasu New Member

    Hi everyone

    I was active on these lists back in 2009. I'm back and not very happy to be. But I love this group and the kindness and support.

    To recap, I had my first cochlear hydrops episodes back in early 2009. Anti-virals worked wonders for me then. I was on Famciclovir and JoH3 - it took only 3 days for Famciclovir to kick in. I also saw Gacek for good measure who advised me to take the Fam forever. Not one to put too much medicine in my body, I gradually tapered my dose to zero over a two year period.

    I pretty much forgot I ever had this disease until one evening late January this year. It started with low frequency ringing starting one evening. My main symptoms are loud ringing, terrible sound distortions (like someone has put a small extra speaker in my ear) and some mild hearing loss in the lowest frequency. To be honest, this time the severity is less than before. My biggest issue is that the darn thing shows no sign of leaving this time. It's two months now. At least the previous time, symptoms used to end after maybe a maximum of 3 weeks.

    So here's what I have done so far: As soon as my symptoms started I started the antiviral dose and JoH (Lemon bio, vinpocetine, and L-Lysine). Six weeks later I went and saw Dr. Derebery at House. The hearing test there showed a loss at the lowest end. She said that my audiogram looks a lot better than the ones in 2009. She thinks that the antiviral is helping but put me on Singulair and bumped my dyazide dosage to 50mg and suggested no more than 1500 mg of Sodium. She told me to expect to see some results in about a month. It's been three weeks now since that.

    Like I said, last time was worse. I am able to get by with my life for the most part. But last night I woke up in the middle and started worrying about if this thing will ever end. Felt frustrated and got into a mild panic attack, sweating profusely and feeling desperate. Anyway, got out of it somehow and went back to sleep. I already have high frequency tinnitus all the time and have made peace with it. Now I have a new uninvited guest to make peace with ;D

    For those with cochlear hydrops, how long does an episode usually last? And for those on Famciclovir, what's the maximum dose you can safely take? I am inclined to bump it up slightly to see if that will help.
     
  2. recentlydizzy

    recentlydizzy New Member

    Sorry to hear the "beast" is at it again! I can't be much help on the meds but wanted to say sorry it is acting up again. Hopefully a little time and the antivirals will beat it back down. Best wishes for a speedy recovery!
     
  3. vasu

    vasu New Member

    Thanks recentlydizzy.

    I realized the optimistic way of looking at this is that had I not started the AVs on time, things could have been much worse. Who knows.
     
  4. jbtambien

    jbtambien New Member

    I'm so sorry you have reason to return to the board, vasu.
    I don't have enough experience with this to share much. I also had excellent results with JOH and Valtrex, but can no longer take the Valtrex due to severe facial swelling and hives.
    The tinnitus has returned, but not as badly as it was before starting Valtrex.
    The ear pressure is minimal. The dizzies are also minimal.
    My fingers are crossed that with time, your symptoms will subside again and that mine won't worsen.
     
  5. cappelhans

    cappelhans New Member

    Vasu - really bummed to hear this. You were very kind in replying to my PM's last year. I would be optimistic that you can get this under control - who knows what combination of viral/immune/metabolic/weather/etc. has set you off this time, but I doubt it's a different causation than your first time. In that case, the same treatment should eventually win out.

    It's hard, but I've come to terms with the idea that a crucial part of my body is chronically injured. It may not present symptoms all the time, but I don't think after a first case of CH your inner ear is ever going to function 100% again, which means a lifetime of giving it the best care/maintenance/protection possible. If we do that, we have a (statistically) pretty good chance avoiding the worst aspects of the disease. The shadow of fear that your world could descend into vertigo is no fun - I know it well - but you're doing everything you can. Hold steady and keep your mind busy with the rest of life!
     
  6. June-

    June- New Member

    For me, 4-6 weeks.
     
  7. bubbagump

    bubbagump New Member

    Is that a "cluster"? What are your symptoms between clusters? mostly normal?
     
  8. bubbagump

    bubbagump New Member

    Hey man, you have 3 weeks of illness and then 100% clear for 5 years?
    That actually sounds pretty good to me!
     
  9. June-

    June- New Member

    To be more clear, before i took antivirals, I had nonstop symptoms such as tinnitus, distortion and hearing loss for 9 months. After treatment with antivirals and allergy shots, my symptoms were ALL gone. However, about once a year I would have a setback (mild by comparison to the original 9 months), and these setbacks would last about 4-6 weeks. I would take antivirals during this time. Whether they would have been self limiting even without the antivirals at that point, I do not know. I think the antivirals helped with the setbacks because about a eek after I started taking them I would have a noticeable improvement but it would take 4-6 weeks to get back to normal.
     
  10. Chinook

    Chinook New Member

    Vasu, there are many similarities we share with experiences, except for the prescription taken. When I first tried antivirals I was on acyclovir for a while and went off because I didn't like the idea of being on it for long periods of time. I have actually gone on and off a couple of times, and each time the fullness and sensitivity returned along with loud tinnitus. I also have experienced a severe dizziness episode a couple of times although not rotational vertigo. Of course I would resume taking the antiviral and it would take a good three weeks back on the acyclovir for symptoms to subside and for the most part disappear. My latest bout was last fall, did the same thing, went off for a while only to have the symptoms reappear. After four weeks of being back on the acyclovir and no signs of improvement, I was getting really concerned and was able to switch to valtrex. Within a week to ten days symptoms started to subside and I am again back to just having low tinnitus and I do have some lingering balance issues.
    So I don't know if it was simply that the acyclovir was taking longer to kick in or the valtrex was a better drug but it did take longer to get rid of my symptoms this last go around. I'm on a maintenance dose of valtrex and I also take lysine hoping to eventually rely just on lysine to keep it at bay, but it will be a long while before I feel confident in going off valtrex altogether. Moral of the story, if you were helped by antivirals once, hopefully you can get there again. Hang in there.
     
  11. vasu

    vasu New Member

    cappelhans, thanks.

    Honestly, I refrained from posting anything here before because I did not want to discourage anyone about AVs.

    I hear that the allergy season this time around (in the CA bay area) is pretty intense. I wonder if that is contributing to the problem this time.

    I hope to convince my family doctor to switch me to Valtrex and see what happens.

     
  12. vasu

    vasu New Member

    I thought I was cured forever :). But honestly I am starting to make peace with the symptoms.
     
  13. vasu

    vasu New Member

    Thanks Chinook.

    Monday, I convinced my doctor to prescribe Valtrex, of which I took one dose that night (1000 mg). A few hours later I started feeling dizzy, and my tinnitus frequency changed (it became lower in frequency). I was a bit spooked by that experience and so the next day went back to Famvir, as I needed to be at work. Don't know what to make of Valtrex. I still have the medicine. I wanted to monitor my normal variation on Famvir first to see if I get dizzy again and then decide.

    Did you get any dizziness while on Valtrex?
     
  14. msprygada

    msprygada New Member

    Some people have....read here..... http://www.menieres.org/forum/index.php/topic,37796.0.html
     
  15. Vicki615

    Vicki615 New Member

    Pharmaceutically Valtrex (Vacyclovir) appears better, I believe acyclovir is tolerated better by some and does the same job..suppressing the HSV, from my experience and from reading posts on this forum and on google searches.
     
  16. Donamo

    Donamo Guest

    House were going to do a clinical study with Famvir, which was cancelled due to funding. However, here is what they said they were going to do:

    I used that as a guide although I took 1 every 4 hours ( 6/day total) for quite a bit longer than 1 week. It did work for me. And I am still here to talk about it. I did have some joint pain issues and I've always been a bit concerned that the AVs were the problem but I have no way of knowing for sure.
     
  17. jbtambien

    jbtambien New Member

    When I started on Valtrex, I also had fluctuations with my tinnitus which concerned me. I did some research and found a number of posts where this happened to others right before the hearing started clearing up. Sure enough, I stuck with taking the Valtrex, and my tinnitus and hearing loss both subsided totally.

    Unfortunately, I have had an unusual reaction to Valtrex of facial swelling and can no longer take it. :-[ My symptoms of tinnitus, hearing loss, and pressure have returned somewhat, but not more than I can tolerate. I continue to take the JOH regimen.

    Someone mentioned Valtrex vs acyclovir. Valtrex converts to acyclovir in our bodies. An advantage of Valtrex is that it provides a more stable blood level for longer so you don't have to take it as frequently as acyclovir.
     

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