So I started on generic Valtrex (from Northstar) 5 weeks ago. I also had three inner ear steroid injections a week after starting. Two weeks into taking the AV's, I went to Florida on vacation and began to feel a lot better. Once I came home from vacation, the symptoms started creeping back (ear pressure, loud ringing, hyperaccusis, hearing loss, dizziness and brain fog), so I decided to stay on the high dose of AV's for an addition three weeks. Next week will be six weeks at the highest dose and I'm still not feeling great. I'm wondering if the AV's just aren't going to work for me, or if I should taper down to the Dr. Gacek recommended dose and cross my fingers? I can't keep staying on the highest dose as I don't have enough medication to get me through. Any suggestions are appreciated.
Where do you live when not on vaca? Is it a very different climate? I am wondering if allergies are aggravating your symptoms. Usually allergies are to familiar things in our home environment not so much when we visit a different place. Allergy treatment helped my hydrops a lot (as did antivirals). I do not sneeze a lot or seem to be an allergic type person at first glance. Anything that adds stress to your immune system can affect the hydrops adversely. It is an avenue to explore. It
Just to note, Dr. Gacek does not say you have to reduce after three weeks. He has specifically said it's all right to stay at the max dose much longer than that. As long as you're not having side effects and are getting your blood work done properly, then your doctor might be willing to continue the script. June is right about it possibly being environmental. Check into that.
June - I live in Cincinnati, Ohio. I was tested for allergies 10-12 years ago shortly after I was diagnosed and they didn't find anything. I suppose that could have changed over time as Cincinnati is a hotbed for allergies. I think stress probably plays a big part in my issues as well, and being on vacation alleviates a lot of that! I'll definitely have to revisit the allergy connection. Scott tom - my doctor is kind of letting me dictate the antiviral dosage since he doesn't know much about it other than the Dr. Gacek's study I gave him. He probably would continue the medication, but how long is long enough to know if the AV's are going to help me. When do you throw in the towel and know it won't work? I know everyone is different, but I really don't know what to do with the dosing, length of time, etc.
I began Valtrex 5 weeks ago also. The first day I started it, my affected ear became immediately plugged. I had read that sometimes the symptoms get worse before they get better. However I experienced more short episodes and more hearing loss. After 3 weeks, I began experiencing a dull pain in my right side under my rib cage. I've experienced that pain before when my liver and gallbladder were congested. I also started becoming more sensitive to fragrances. I had another Menieres attack which began this Monday morning and lasted longer than 24 hours. During this attack, I lost all hearing in my affected ear. This is the third day and my balance is better and my ear is able to hear sounds but not audible even with my hearing aid. I was not feeling like the AV helped in my situation but seems to have made my hearing worse. I agree that stress is my biggest trigger. I decided to stop the AV at this time. I am also going to do a liver flush to help with the congested liver/gallbladder and chemical sensitivity. I am also taking the John of Ohio regime. I appreciate being able to find this site and read everyone's experiences.
I've seen prior posts from folks stating it could take up to 6 months to work before giving up which is similar to the JOH regimen as well. I can only speak for myself, but I have just begun the antivirals and I'm committed to using them for at least 5 or 6 months before throwing in the towel (with regular blood work being done).
Teesdale - has your doctor given you a dosing schedule outside of Gacek's study? If you don't get relief, will you stay on the highest dose for the full 5-6 months?
My personal line of attack would be 6 months max on name brand Valtrex. If that doesn't work, then it's likely not viral. However, if you can't wait 6 months and go for the laby, we all would understand. It's your life and you need it back.
Scott Tom - My insurance refuses to pay for branded even if the doctor writes it medically necessary and at $1000 a month, that's not an option, but I am on Northstar generic which seems to have the best reviews. I'm not getting vertigo, but I have that constant lightheadedness and brain fog along with a lot of pressure, hyperaccusis, hearing loss and the buzzing. How long did it take for you to get relief from those symptoms other than vertigo?
I provided him the Gacek study sometime ago and he was not supportive of maximum dosage. He ended up writing me a script for 1000mg per day for 30 days with 1 refill. I was desperate so I self-prescribed 3000mg and began taking it at that dosage. Obviously within a week I was starting to run low so I went in to see him during a bad spell. I looked at him through dull, lifeless eyes and told him I was tired of living this way. I had my daily diary with me and I just held it up and said I haven't had a handful of good days in the last two months and he became immediately sympathetic. He wrote me up a script for the 3000mg per day for 1 month with 1 refill. As luck would have it, my prescription plan in work mandates that I use Express Scripts mail-in prescriptions for long term medication and they only deal in 90-day orders and that's what they are sending me at the 3000mg per day. With one refill, I will get another 90 day supply so that will cover me for 6 months and that's how long I will take it if necessary.
FWIW, i had my success with generic acyclovir and famvir, never took valtrex of any kind. Might be another option. Famvir even in generic may be expensive, acyclovir not so bad costwise. With acyclovir, it is important to spread the dosage evenly througout the day, in five doses i was told.
It's been nearly six weeks since I've been on the generic Valtrex. I haven't had any vertigo since August, but the hyperaccusis and overall feeling of lightheadedness is worse than ever. Did antivirals help these symptoms for anyone and if so, how long did it take? Doctors aren't giving me any suggestions and I just don't know what to do anymore! I've become a complete hermit due to any sound being painful! Help!!!!!
Yes, antivirals helped a lot in my hearing symptoms including distortion, tinnitus , hypercusis etc. It took a month to feel like it was 60% improved, from that point on very slow, many months.
There are hearing aids that help suppress noises that might be very helpful for you. I would personally bump back up on the dose to see if I could eliminate those symptoms.