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Discussion in 'Your Living Room' started by AmyLeigh, Apr 11, 2019.
I think I know what you mean and maybe it's the pulsatile bit previously mentioned.
Can you give the amounts you take and how often.
Mine is not pulsating though, it’s a constant stream.
Hi June! Sally again!! I am seeing a Neurotologist on July 3. I am pretty sure he will diagnose me with cochlear Hydrops. My first ENT thinks I have Hydrops after treating my middle ear infection. It cleared up, but my fullness has stayed. When he put me on a diuretic, I developed the tinnitus. After a month with no improvement, he told me to quit taking them. He is the one who recommended the Neurotologist. I went to a second ENT who just happens to have Ménière’s himself for another opinion. He did maybe a more thorough hearing test, and it showed mild low frequency hearing loss.... said I wouldn’t even notice it. ( My ENT had just done a hearing test a few days before, and it was normal.) He is very old school. He just scowled at antivirals!! I had already started them because my ENT went on and prescribed them to me. He couldn’t diagnose me! Said it was a toss up between a Patulous Eustachian tube and mild Ménière’s. ( Heard His audiologist tell him she thought it was Ménière’s. ) He, too, wants me to see the same Neurotologist. Sorry this is getting long, but I have been taking 3000mg of Valtrex for a little over 5 weeks. I “think” there has been some improvement, but about the time I think I am getting better, the next day, it doesn’t seem that way. Should I continue taking 3000mg? How long can I take that large of a dose? I also am taking 3000mg of Lysine. It is mainly the fullness or the stuffy ear feeling that is so maddening. The last two days I thought I might should drop down to 2000mg, but I feel a little stuffier today. I really have tried to cut down on my sodium to 1500mg to no more than 2000mg for the last week, but not so sure that is helping... maybe a tad. This is so hard to figure out. I am praying that when I start the allergy shots, I will recover as you did. Advise please and to anyone who would like to respond... what has worked for fullness??? Thank you all for anything positive you can share. Blessings to all!
Svines, I would say the allergy shots helped more for fullness. No matter how many neurotologists (and there were several very well respected ones) told me, all menieres/ch and showed me tests and explained how they knew, it sure did feel like there was some middle ear thing too to me. Whatever ... the allergy shots did a lot but .... they take a long time. Months, years even for full benefit. But as Ann Landers would say, the time will pass anyway, might as well have the benefit down the road. I am sure glad i did have the allergy shots. All that said, the most horrible part for me was the distortion, the tinnitus and the progression towards vertigo and the antivirals fixed those things. For me, it was always two steps forward and one back with antivirals. It was not a straight line with every day better than the last. I would say as long as your dr thinks it is safe for you, keep taking them. I do not know the dosage for valtrex, i never took that one for my ears (took it for shingles though). Good luck!
Your ENT actually used the term "Dangerous"? This is exactly the kind of rhetoric that would drive me to find a new ENT. I'd call him on it and ask him to justify his remarks. Then, find a new ENT and document it all in an online review of his services.
Agree with Onedayatatime. Antivirals are very benign compared to drugs they use without a blink like steroids not to mention destructive surgery.
Emily, the ear fullness is about to drive me crazy!! I have very mild tinnitus at this time, but I have got to get some relief with the fullness. I have been on 3000mg of Valtrex for almost 6 weeks. Maybe a little better.. as June says two steps forward and one step backwards. Are you still having the fullness? If not, what do you think helped it. Thanks so much.
I do not have ear fullness any longer, my symptoms are mostly tinnitus. Which now is subsiding, it is bad day every other day .
I think the JOH regime & the B 5 & 6 have helped me . Have you read any of the JOH article? Also the B 5 is 125 mg B 6 100mg . I take them first thing in the morning.
I sure hope this helps. Hang in there....
I will be seeing the Neurotologist in two weeks. Two ENT’s aren’t sure what is going on with me, but both suspect Ménière’s. ( One mentioned it could be a Patulous Eustachian tube. ) I have been waiting to see if the antivirals work. It’s been almost 6 weeks since I started taking them. Still doing 3000 mg of Valtrex...maybe a little better. I have allergy testing coming up next month so to answer your question, I have not tried JOH because I am waiting to see what the Neurotologist finds with all of his testing and seeing what allergy tests reveal. I used to be on them years ago, but I was never tested for food allergies. This time I will be. My only symptoms so far are the fullness and a very subtle tinnitus.
Joney...with these antivirals they dont work the same way as other things 'just take a pill'. There for the amounts are individual. Like starting off treatment on say a thyroid med, you take a small amount, say 1 pill, and wait to see if you are good or here, if you get any die off reaction. if you dont in about 4 - 5 days then you take 2 pills (1 momring 1 evening). I would be careful jumping up in dose as these things can be potent and you could temporarily feel quite ill from die off. Just keep raising dosage every 4 - 5 days as die off wanes until you hit that point where you are clearly killing enough virus and other pathogens and you feel no die off. eventually once you get no die off, as said by someone else, you lower dosage back to a maintenance dose (1-2 pills a day). I would not start anymore than 1 at a time. You want to isolate how much die off you get from each substance. better to run through 1 of them fully for weeks and months and then use just a maintenance dose and start 1 more doing the same thing. you really only need 2 types overall. 1 might lead long term to some resistance but thats not a huge concern in the short run.
Okay, thanks for the advice, I do appreciate it. I have been taking 3000 mgs of lysine since the end of April. I take 1000 mgs three times a day on an empty stomach. I had no reaction to the lysine. I started taking Olive Leaf Extract a few days ago. One in the morning and one in the evening. I just found out yesterday that these too, should be on a empty stomach, so I just add them to my nighttime and morning time lysine. I realize now that I should have started with one for awhile, as you suggested, but I haven’t had any issues with it so far, so I’ll just keep going. Not adding anything else yet. I do keep a clean diet, no gluten or dairy and I try to eat organic when possible. Also, staying low sodium. The only issue I’ve had for the last month or so is tinnitus, which hasn’t been all that bad (it’s livable). I can’t really say that I am dizzy or off balance, but there is something going on in my head...the only way I can describe it is it feels buzzy. But I found when I take my glasses off, it’s much better. I just got new glasses at the beginning of the year and thought that was the problem, but had them checked and they assure me they are fine.
Someone else on here suggested Mind Over Meniere’s website and they offer other possibilities besides a Meniere’s diagnosis. There is something called binocular vision disfunction, which I scored a 33 (15 or higher suggests you have it). This will be something else I will explore if I reach dead ends with some of this other stuff. All of this to say, I don’t know if the antivirals are the answer for me, but I have to give it a shot. This whole thing with having to explore a million different possibilities and so many in the medical community are useless because they don’t know enough about this. So you’re left on your own. Sorry for the long post.
you are on the right track. I will message you to get some more details.
hey could you please explain what die off is? thanks
Look up herxheimer reaction or herx for short. Its basically when these pathogens like viral cells candida or mold die from exposure to a substance ,say olive leaf, and release their toxins into your body. Lots of bad stuff in those guys. The amount of die off corresponds to the amount of pathogens in you and the amount of antivirals or even antifungal you are taking. If you have a high load...you will get a sort of flu like lethargic feeling. Its not to fear or worry about just to be managed. Only thing that would be strong is if you dont go slowly and take 4-6 pills. Then you would likely see not only die off...but some md symptoms.
Thanks, I will look up what you have suggested. I have been on Acylovor since Late January with L Lysine and hav e had no problems taking these.
Hi June, I went to an allergist today and was positive for dust mites only. He said he doesn’t think my symptoms are related and sent me home with a sheet on minimizing dust at home.
Do you know which allergens you tested positive for regarding your allergy shots? Thanks