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Antivirals - Brand or Generic? Relative Cost?

Discussion in 'Your Living Room' started by JohnL999, Oct 12, 2020.

  1. Pa Cowboy

    Pa Cowboy Member

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    Donamo, after reading stories just like yours I am concerned that MD could return at any time, that's why I continue to take valacyclovir, along with the JOH regime. I've quit coffee, alcohol and the salt shaker forever.
    I'm too scared to stop with any of these and promise to not let my guard down.
     
  2. Donamo

    Donamo Active Member

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    Good stuff Cowboy. Don't forget to stay away from heavy Arginine like most nuts and protein powders. I think it was the nuts and wife baking with Almond Flour etc and stress of some normal family conflict and the anxiety of steering our life around Covid that did me in. For me, it's the adding up of triggers that gets me, one or two is ok, five is MD territory.

    I think I'm getting better now, off of all nuts and derivatives, back on AVs. Family conflict never seems to go away so need to control those triggers that I can, and let the other ones do what they will do.
     
    • Like Like x 1
  3. JohnL999

    JohnL999 Member

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    Day 8 of Acyclovir.

    UGHHHH was pretty much fine all day today. Some mild hissing tinnitus which I've had for years. Actually told my coworker i felt pretty great this afternoon. Looking forward to stringing some good days together maybe. No pressure at all. All of a sudden on the way home from work my ear starts a loud weird ringing making me sound like I'm underwater. This has happened many times to me and usually tapers off after an hour or two or so, but sometimes it makes me have a bad day the day after. Does this happen to anyone else? It is very scary and I hate it more than any other aspect of this crap. The only thing I can do is take a benzo and try to sleep it off. For some reason it usually happens at the end of the day thankfully. I don't know if I've ever seen anyone else describe this phenomenon. At the worst days it was happening up to 3 or 4 times a day. Thankfully that hasn't happened in weeks. I always feel like more damage is being done to my hearing when this happens and its so scary. I HATE IT.

    I do have to say I strung together 4 great days so far on the antiviral and I haven't had much of any bad fullness at all. So why this crap still?

    Maybe this is the virus's last salvo before shutting the f down.
     
  4. JonBubo

    JonBubo Member

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    On days like that... Stop, drop and fill out a food diary. Have you been doing that? That means anything and everything you consumed for the last 12 hours prior to symptoms. Realistically, its mostly 1-3 hours after ingestion. Get to know each brand's ingredients. You may be shocked at what you find. Allergens too are in effect here. So yes, happened all the time for me prior to reducing the viruses and other pathogens. You need more than acyclivor I feel.
     
  5. JohnL999

    JohnL999 Member

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    I took my valium last night and slept a solid 12 hours.

    Woke up this morning to an hours worth of ringing that finally was subsiding and now a few hours later its happening again..... I know our weather is changing slightly as we've been sunny and dry for a while and there's some rain coming. Perhaps that's causing it.

    One positive thing I can say is that I have had greatly reduced fullness since starting the antivirals. Usually these 'ringing' episodes are associated with a lot of fullness. Also the ringing this morning and that is happening now is not as severe as the one last night that was making my voice sound underwater and making my voice sound almost robotic for a short time.

    I have also noticed since starting the antivirals I have had very little to no regular tinnitus. Yesterday was the first day I had some moderate hissing that wasn't too bad.

    Still trying to be patient but wish I could just go back to working in the office and feel normal. Its like even on days where I feel totally fine all day I don't know if something will come out of nowhere like it did yesterday.

    Still praying to the Lord that these medicines will help to alleviate these horrible symptoms and suppress this virus.
     
  6. tmcmahon2

    tmcmahon2 Member

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    The tinnitus will vary regardless, in my experience. It gets better over time, if what you're taking is working, but some days it's louder and some days it's not. Some days I can't tell it's there and some days I wake up and wonder what the hell is going on.
     
  7. JohnL999

    JohnL999 Member

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    This is absolutely ridiculous....woke up and my ear is still all screwed up. Feel like the 'one hour ringing session' is about to start again and is this going to happen all day again? All this is going on with absolutely no pressure. I'm really wondering if I should forgo the 2nd steroid injection I'm supposed to have today. I seem to remember neither the oral nor the first steroid injections stopped this from happening before. It is very hard to make it through the day like this. So sad and dejected.

    This is not what I would call regular tinnitus.
     
  8. JohnL999

    JohnL999 Member

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    So i just got back from the audiologist follow up from last weeks steroid injection. I was expecting a worse result than last week considering the week I've had with all these ringing episodes.

    I improved AGAIN for the second week in a row! I was shocked (in a good way). It was hard for me to hear the beeps from all the roaring in my left ear, so I thought I'd do worse if anything. She is going to have print outs ready for me this afternoon, but I think in virtually the whole range I am no more than a 20db loss. 2 weeks ago I had 30-40+ loss in some of the ranges. My right ear is pretty much totally normal with just a slight drop at 8K but still within normal range.

    The oral steroids in the past never really seemed to help recover any of my hearing so I personally think the improvement is from the acyclovir.

    I am thinking I might as well go ahead with the 2nd injection today and see if I can get it even better.

    This is definitely great news in light of how down I was feeling after the rough last couple of days I've had.
     
  9. Pa Cowboy

    Pa Cowboy Member

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    JohnL999, it's good to keep track of what's working or how your feeling but don't put to much emphasis on daily feelings. When judging how your feeling try to look at weeks or even months instead of daily. You'll put less stress on yourself which might help you get better.
    Also, my opinion is antivirals and any form of steroid will work together very well. A year ago I started on Prednisone and then received a steroid shot in my back to alleviate the pain running down my legs from a pinched nerve. Not only did the steroid shot eliminate my pinched nerve pain but it seemed to be the push over the top I needed to get better due to MD. Wasn't planned that way but that's just the way it happened.
     
  10. JohnL999

    JohnL999 Member

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    Had my second steroid injection today. Feeling OK. Hoping for a better week this week and maybe some even better hearing scores on next week's audiogram. Told my ENT (this is not Gacek, its my local ENT) how Maxzide makes my fingers and toes numb. He shrugged and said 'better than worse Meniere's symptoms right?" (HUH???) I asked if there were other diuretics that might not have that effect we could try. His response ('not really').

    Told him about these distressing ringing episodes and he just said 'that's Meniere's, all I've got to treat it is steroids, diet, and diuretic'. Basically, too bad nothing I can do. Thank goodness I went to see Gacek in Mobile and got on the acyclovir. I wish he lived closer but I just can't drive all that way every week for injections. So I guess I need to find a new local ENT that can work in conjunction with Gacek somehow.

    I can't imagine the people that trust these doctors and don't research on their own for other options like on this forum and suffer needlessly. Maybe if he would have hinted it could have been Meniere's 3 years ago when I had the horrible fullness (but no ringing) I would have found my way to antivirals back then and nipped this totally in the bud. I tried to bring up Gacek and antivirals with this one and knew in 2 seconds it wasn't going anywhere. I didnt even tell him i went to Gacek because he's the type to probably get offended.
     
  11. JohnL999

    JohnL999 Member

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    Today is day 11 on acyclovir.

    Pluses:

    • There has been some days with minor fullness and pressure in my left (bad) ear, but with the exception of the first day after starting the acyclovir, the aural fullness has been hugely improved and largely absent
    • Again with the exception of the first day after starting the acyclovir, I have not had any of those really terrible days where every minute feels like an eternity and you just can't wait for bedtime and hope the next day will be better
    • I have never had any vertigo at all since this all started, only some mild lightheaded, slightly dizzy episodes. Since starting the acyclovir, these incidents have been even more rare
    • Besides these intermittent 'ringing' episodes I'll describe in the 'minuses' section, the tinnitus has been much better and there have been several days of no tinnitus at all
    • Significant improvement in hearing test compared to the test the day I was 'diagnosed'. After that had a steroid injection into the ear and the following test showed even more improvement.
    Minuses:

    • Still have days where I will have these intermittent episodes where my left ear will start ringing in a high pitch tone for usually an hour or so and then dissipate. This is usually but not always associated with a buildup up pressure in the left ear. The pressure and roaring sound will increase and increase and then the ringing happens and the pressure immediately alleviates and after the ringing has stopped I will have a 'clear' left ear with less pressure and can hear better. Sometimes it will stay clear but on bad days the pressure will start building all over again and there will be another episode a few hours later. Before acyclovir, there was always a big pressure build up before the ringing alleviated it. After acyclovir, there is much less pressure associated with these episodes. I also notice the ringing, which would usually last at least an hour (sometimes much longer) has been shorter in duration, sometimes ending after 20 minutes or so.
    • There was one day on acyclovir where I had been pretty much feeling good all day where all of a sudden one of these ringing episodes started. It was a pretty bad one as it made my voice sound robotic and like I was underwater. I had to take a valium and just sleep that off.
    • Will go through a day or 2 with no ringing episodes. Then will have a day with 1 or 2 ringing episodes, but sometimes there are more. The worst was 5 times in one day since being on acyclovir. I should start keeping a journal, but I would say in the 11 days I've been on acyclovir there have been about 6 days with no episodes vs 5 days with episodes.

    So overall I would say there has been improvement. If I could get these intermittent ringing episodes under control I would feel almost back to normal. The most discouraging part is that I did feel almost back to normal for 5 straight days after the first bad day after starting the acyclovir, and then the ringing episodes started again.

    I have also been on the full John of Ohio regimen and the Bennyhill B vitamin regimen for maybe 5 weeks now. Been following that faithfully. At JonBubo's suggestion was considering adding some zinc and quercetin, but my order has not arrived yet.

    I have also had 2 steroid injections into the left ear. I had good hearing improvement after the first one (haven't had the follow up test since the second one yet). Honestly I feel like these 'ringing' episodes are worse after the steroid injections and wonder if I should continue with them. I was supposed to have one more this week if the hearing test shows further improvement.

    Am I being impatient? I know some others said it took months before they finally got relief, while it seems like other people got more immediate relief. Dr. Gacek's nurse told me you have to give it 2 full weeks to even know if it's going to work at all, and that weather changes can still give you symptoms (which we are having a lot of down here in S. Louisiana) I feel like I have gotten improvement already.

    Any thoughts? Recollections of how your antiviral recovery journey went? Is this stuff really working (I SURE HOPE SO!)
     
  12. Donamo

    Donamo Active Member

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    yes, you are being impatient. :) That probably doesn't help. Just go put the kettle on and watch it until the water boils LOL
     
  13. JohnL999

    JohnL999 Member

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    Getting so frustrated and distraught.

    Every day now for at least the past 7 or so days it seems like my bad ear will start ringing in a distressing tone for a period of 30 minutes to two hours, very slowly dissipating. There are rare times where it started before bed and was still barely ringing when I woke up in the morning.

    I am 17 days in to the max dose of acyclovir. It has helped a lot with the fullness and has helped a lot with the bad tinnitus (other than these weird ringing episodes). Two days into acyclovir, I went through 5 straight days of feeling great. Then the ringing sessions started again and have barely let up since. I guess I'm lucky I don't have vertigo but this really sucks!

    I have had days of these ringing sessions before starting the acyclovir, but they would usually only last for a few days and then go away for many days to a week or more. Now it seems like since starting the acyclovir its happening almost as a daily occurrence, sometimes multiple times a day. It's miserable, makes me almost hate to get out of bed in the morning and is really wearing me down. Even when its not ringing I can feel a slight pressure in my ear and a sound that lets me know its coming so it's like I can never really relax or enjoy anything.

    Is this the getting worse before getting better part?

    I wonder if the 2 steroid injections I got could have anything to do with this. You would think they would hav helped it to stop happening, but ever since getting 2 in the last two weeks its gotten worse. I guess its a good thing the doctor decided not to do the third one that was scheduled for today. I wouldnt think steroids could make things worse but it feels that way!

    Now the doctor wants me on Zyrtec during the day and benadryl before bed and is having a blood allergy test done. I have always strongly suspected an allergy component to my problem but he's afraid to do the skin testing for setting it off even worse.
     
  14. JohnL999

    JohnL999 Member

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    Forgot to mention in my post that I have developed a large fever blister in my mouth. This is the first fever blister I can remember in a very long time. As a child I had them very frequently but they became more and more rare as I became an adult. Now they are very very infrequent. I wonder if that is a sign that the acyclovir is stirring everything up and making its last stand? I sure hope so.
     
  15. Pa Cowboy

    Pa Cowboy Member

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    "Cold sores are small blisters around the mouth. They are also called fever blisters. They are caused by the herpes simplex virus. The most common strain of the virus causing cold sores is herpes simplex virus 1."
     
  16. JohnL999

    JohnL999 Member

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    Pa Cowboy I know that fever blisters are caused by the same virus that is suspected to cause the Meniere's. Thats why I mentioned that I thought it was very strange that I got one for the first time in years at the same time I'm going through a week + long period of worse symptoms. I sure hope I'm one of those who the antivirals makes worse before getting better because every days its getting harder and harder to get out of bed. I am getting very depressed and worn down.

    Trying to keep the faith but lately each day almost seems worse than the day before.
     
  17. Donamo

    Donamo Active Member

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    You said "max dose of Acyclovir" - what dose is that? Also Valacyclovir is preferred usually and there is also Famvir. You don't have vertigo. A lot of us wish we could say that.
     
  18. JohnL999

    JohnL999 Member

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    3 times a day of the 800 mg acyclovir.

    And yes I certainly am thankful I don't have vertigo. I cannot imagine how all of you with the vertigo deal with that on top of everything else. You are all truly amazing to go through that and keep going on every day. I truly salute you for your courage and empathize.

    This stuff just makes my anxiety go through the roof. Especially on days like today when as soon as one of two hour long ringing sessions stop I can already almost hear the sound in my ear that's telling me another one is building. I woke up this morning with that sound and sat through church the whole time with the disconcerting noise in my ear. Before starting the acyclovir I would usually have these weird ringing sessions for a couple of days and they would go away for several days to up to 2 weeks. Now on the acyclovir its happening every single day for seems like 2 weeks in a row now.

    I'm not sure why the acyclovir, but that is what Dr. Gacek (the son in Mobile) prescribed to me. If things don't start getting at least somewhat better by the next visit on the November 12, I will ask him about the other types of antivirals.
     

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