a/v's what symptoms do you still have?

Discussion in 'Your Living Room' started by deadeye, May 4, 2014.

ATTN: Our forums have moved here! You can still read these forums but if you'd like to participate, mosey on over to the new location.

  1. deadeye

    deadeye New Member

    acyclovir has helped me with my dizzies when I get up in the morning I no longer have to fight my balance some of it is gone with having this crap for 25 yrs but I manage for months the fullness, sensitivity, and fullness had lessoned the last month it has returned still much better off but I've lost some hearing again in my left ear due to the returning symptoms I suspect allergies but who knows
  2. Vicki615

    Vicki615 New Member

    I still have tinnitus and when I get sick or eat nuts I get fullness in my MM ear and ringing gets louder,(so I increase my dosage) but on regular days, I just have tinnitus. I am due for another hearing test so I will see what results say after being on AVs for over a year since my last test.
  3. HappyGrace

    HappyGrace New Member

    deadey- I've been on valacyclovir since Sept w/ no vertigo anymore but my hearing loss has continued all that time, also some tinnitus, fullness. I've had vertigo return now in the last month and a half and wonder also if it's due to seasonal allergies.

    It's great your vertigo is still gone!
  4. Vicki615

    Vicki615 New Member

    This season is supposed to be a very bad allergy season and as Dr Gacek has said allergies are a known trigger for MM, sometimes we have allergies and we don't test positive for them. The advice I got was to increase my acyclovir during allergy season. Which I have been doing on days when I feel I am being affected by the pollen count and so far so good.
  5. deadeye

    deadeye New Member

    I still cant walk into a large store without keeping my head down and still get sick at my stomach dread going to pick up things thank goodness for amazon I buy most of my stuff online my wife and I listen to live music every weekend and dance a little every weekend is different can't sit too close to the band most of the time am so anxious to hear from our board's SS patients
  6. Vicki615

    Vicki615 New Member

    I think we always need to protect our ears, especially we do not have a cure but symptom suppression. But how wonderful you and your wife can go dancing now, that's wonderful!

    I know what you mean about large stores and bending your head down, for me I am okay with those being on AV's. I hope things improve even more for you. Have you thought about a second or concurrent cause of your MM like MAV or systemic fungal infection?
  7. bubbagump

    bubbagump New Member

    question for all of you on AV's...

    1) if you still have symptoms, especially symptoms that come back, how do you know that AV's are working?

    2) if the AV's are working, wouldn't they work also even when you have allergies?

    3) are there any side effect of taking AV's long term? i think it's ok taking it for a few weeks or even up to a couple of months, but wouldn't taking it yearly damage your body?

  8. Vicki615

    Vicki615 New Member

    The AVs we take have been studied many times and as long as you have blood tests checking your kidneys periodically there seems to be no or very little ill effects from them. I have to check my liver values taking crestor, so it is not unusual to have to check.

    Av's do not suppress the virus well enough under certain conditions, such as extreme stress or allergies etc this is a flaw in the medication, better antivirals need to be developed, even people with genital herpes get set backs while taking antivirals, sometimes they just don't do a good enough job. AVs don't kill the virus, nothing does to this date, it just suppresses it.

    They are doing a study now on an AV that has the potential to kill off viruses, like antibiotics kill off bacterial infections.
  9. BumbleBea

    BumbleBea New Member

    I've been on AVs for almost two years. Mild tinnitus occasionally. Pressure only due to weather or if I have too much salt. Absolutely no dizziness. Hearing has not deteriorated at all.
    If you have allergies I don't think the AV will help with that at all. Something to consider.
    I have blood work done twice a year and my levels are fine.
    Both my Drs agree that I could take the AV indefinitely as long as it's working. And it is. Despite some very trying couple of weeks with major stress, my Menieres stayed away.
    Good Luck and wishing you all the same results.
  10. Chinook

    Chinook New Member

    Remaining symptoms for me are mild tinnitus and some residual balance issues that improve with time but I've never been back to 100%

    Bubbagump, I know the AVs work for me because it's when I've been off of them that the nasty symptoms come back; fullness, noise sensitivity, dizzies. When I've resumed taking them, with time they go away. While AVs do not work for everyone, I'm convinced they do for me. The last bout for me was this past winter, I had gone off AVs in late fall only to go back to square one (I was uncomfortable with taking meds for extended periods of time). This time it took a bit longer for my symptoms to go away after getting back on AVs, but I'm back and will stay on and hope to switch to lyzine at some point.
  11. Vicki615

    Vicki615 New Member

    I disagree because if your MM is caused by a virus and you have allergies you need to up your AV dosage, allergies are a known trigger for MM.
  12. kaiguy55

    kaiguy55 New Member

    I am impressed by all your folks who have had such success with antivirals and I would like to be one of you! :D

    My ENT will not try anything that is not the "standard" approach, and has already told me he will not prescribe antivirals because it could hurt my liver(?) and he does not want to use anything "off label". My PCP gave me a 3 week trial a few months back but would not extend further unless my ENT suggested it.

    What advice would you give to someone trying to convince a doctor to let them try antivirals? What do you recommend for dosage/kind (valcyclovir vs famvir, etc) and length?

    Thanks for your help!
  13. BumbleBea

    BumbleBea New Member

    That's true. But instead of increasing the AV dosage, I would look into an anti allergy med. I would think that would help more.
  14. jimmykicker

    jimmykicker New Member

    I feel really good most of the time. I have times where my hearing is a little off and when it is I up my meds by adding a pill in the afternoon. I never had vertigo, but I did have feelings of unsteadiness. I have some mild pitch discrepancies from ear to ear that hell....may have existed prior to hydrops. I can't say. I think my hearing was damaged a fuzz by this mess...the longer you have it without treatment I believe you will have less hearing restored generally speaking. I went after this hardcore, because although I do not play music for a living, it is part of my income and by far my favorite activity. My hearing is mostly restored but not perfect...but I will take it!

    I have no side affects from the antivirals as best I can tell. Keeping my fingers crossed, but in 9 days I have been controlled except for one setback in September that lasted about 3 or 4 days.

    I think dosage and proper usage is paramount. If I miss even one dosage I can tell it the next day.
  15. Vicki615

    Vicki615 New Member

    The advice by Dr Gacek is to increase the dose during those days one feels affected by pollen etc. I for one know I have seasonal allergies but I test negative for them on allergy tests, which are known to give false results at times. I cannot take antihistamines anyway, I get side effects. But Dr Gacek's general rule is to increase by 1 extra pill.
  16. Vicki615

    Vicki615 New Member

    You may want to check the database on these forums and print out all the studies that support a viral cause, and present them to you doctor, it might help. Also I have posted studies on long term use of acyclovir and the conclusion was for 20 years it was very safe and very little resistance. You can bring out to your Dr that AIDS patients are on AV's for decades and do well with them regarding side effects and resistance.
  17. kaiguy55

    kaiguy55 New Member

    Thanks, Vicki! Did you work with a local physician or did you eventually work with Dr. Gacek?
  18. Vicki615

    Vicki615 New Member

    Both kaiguy, my primary finally agreed to prescribe them for me recently after ordering an HSV blood test and my results were high positive so she felt she could explain why she is prescribing them to me just in case she was questioned.
  19. bubbagump

    bubbagump New Member

    do you know why you were high positive?
  20. Vicki615

    Vicki615 New Member

    I had many cold sores on my lips throughout my life, and a majority of the population would test positive for HSV.

Share This Page