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Recommendation for antiviral DR in northeast

Discussion in 'Your Living Room' started by Tomaso, Jul 3, 2019.

  1. Tomaso

    Tomaso New Member

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    Jul 3, 2019
    I'm sorry for not following up sooner. I had full relief from vertigo attacks and tinitus in my right ear by being prescribed Valacyclovir in the recommended dosages in the study. My neurologist on my first visit actually decided to try it without even reading the full study, but we went over some key parts and the doseages. He had never come across menieres and didn't have anything to offer I guess.
    I believe though that I messed up by not continuing the maintenance dose as required. I honestly had never been on a prescription in my life up until that point and I didn't know it was as simple as making a phone call to the Dr office to get another. I ran out and wasn't able to continue the maintenance dose for a period before my next visit. If I remember correctly it was only a short period, but i'd never understood the whole point of the maintenance dose. I guess after dosing 3x a day then 2x a day only one dose a day is needed for the drug to continue gettting past your blood brain barrier.
    I don't know if dropping the ball on the maintenance dose is the cause of the resurgence, but my attacks aren't as frequent now. Ringing is pretty much a constant. I usually work in very loud environments around maintenance machines and am often using power tools that are loud. It's sometimes impossible to even realize your ear is ringing until you're in a quiet place at the end of the day. Thankfully it hasn't been as bad as it was on occasion where it was ringing so loud it was absolutely unbelievable.
    I have to say the story by the pilot stating that you must take Valtrex at least in my case seemed to be the truth. I ran out of money for the non generic, because I have a high deductible health plan. I tried to start all over again at one point with a generic, but it wasn't the same at all.
    After spending time reading the last couple days I wish I had just gone to see Dr. Rausch in Massachusetts for a gent injection. I'm at the point where I think this is the next step, but he's almost four hours away. I'm in my mid thirties and i've dealt with this for four or five years now. I can't even remember honestly. It scares me to think that it may only get worse by not getting it taken care of as soon as possible. I can't believe some people get vertigo so bad from menieres they drop to the ground.
    As much as I hate to admit it, but I believe a career change would also help tremendously. I work insane hours for nine months out of the year. I don't have a steady sleep schedule, nor a good diet.
     
  2. Tomaso

    Tomaso New Member

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    I should also state that my reasoning for going with Valacyclovir was a stupid one. I was so desperate at one point that I ordered acyclovir from India to try and beat this, but it didn't provide the necessary relief.

    I've even tried BHT at one point because I was so scared to lose my job. I can't remember if it provided any relief honestly or what doseage I was taking.
     
  3. Donamo

    Donamo Active Member

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    Why don't you order Valacyclovir from India and do the whole routine again? If it worked before, it will work again. Famciclovir works just as well IMO and is a bit cheaper. A Gent injection is a one way street.
     
  4. Tomaso

    Tomaso New Member

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    I realize I typed a lot and was all over the place. I honestly wish i'd kept notes of everything that has happened to me from the start. I'm not gonna lie reading on here over the past couple days has caused tremendous anxiety.

    I got the Acyclovir from India years ago and took it at the recommended doseage, but it didn't work at all from what I recall.

    I actually got the Valacyclovir prescribed from a Neurologist that was open enough to briefly go over Gacek's paper. This happened on my first visit with him. I think i'm going to save money and try the Valtrex again. I have a high deductible health plan and I couldn't afford the bill for the name brand Valtrex the second time around.

    My attacks are much less frequent now. I can occasionally tell when one is coming on because the ringing will increase in volume the day/night before. Thankfully i've woken up with it first thing in the morning mostly so it's only happened to me at work four or five times.

    That's good to know that Famciclovir has worked well for you also and it's cheaper. My reasoning for not trying acyclovir was strictly because of my experience with the acyclovir I purchased from India.
     
    Last edited: Mar 7, 2021
  5. Aaron

    Aaron New Member

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    I wouldn’t spend the money on the name brand Valtrex. Instead get the Northstar generic, they carry it at Costco and you don’t need to be a member to use their pharmacy. I use GoodRx app (it’s cheaper than my CVS Caremark negotiated price).
     
    • Like Like x 1
  6. Tomaso

    Tomaso New Member

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    I'd have to drive 45mins to go to costco. My experience and that pilot with menieres has been that the name brand works better. I haven't spent as much time as I should have researching the subject, but if you look into it many people had similar negative reactions to certain generics and the general concensus was that some generics work better.

    Personally with something this serious it's not worth the risk. There was no comparison in my experience between the two. I honestly can't remember if I took aurobindo the second try, but I believe that's what it was. They were blue. When I took the non generic I had relief of all symptoms. At that time things were getting significantly worse with attacks and it stopped them.
    The area where I live is very difficult for finding dr's, i'd have to travel. In all honesty it seems that very few know how to treat this disease anyway. I went to the local ENT Dr. Charnock for two years and he did nothing for me. At one time he was open to the idea of anti-virals, but the next visit acted like I was crazy and those words never came out of his mouth. He didn't even prescribe me anything to stop the attacks and I didn't know until I went to the hospital there was a miracle cocktail they can prescribe. I'll never forget the first time my vision returned to normal when they administered the ativan? IV. That was the most miraculous things i'd ever experienced in my life.

    I can't help but think about what could have been had things been handled differently from the start. My first attack was probably four or five years ago when I was 32. Last time I spent time reading on here there is a Dr in Mass that seems to be a proponent for gent injections. I wonder if his logic of using such a severe treatment right away is the most logical so the disease doesn't have time to proliferate.

    I haven't taken anti-virals for a third round yet, but I do have them if I start getting attacks again. I screwed up by not taking that maintenance dose for a year. I can't recall if it was money at the time or what, but I regret it.
     
    Last edited: Jul 14, 2021
  7. teesdale

    teesdale Member

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    Tomaso, if the disease lays dormant for a while but continues to return, I would consider the 45 minute drive to obtain Northstar valacylovir a walk in the park. I have been struggling with this disease for 31 years and the only time I have consistently been symptom free is when on the Northstar valacylovir.
     

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