Just finalized plans to return to Lake Barkley for a week of vaca in July. I admit to feeling a bit pensive as this was the trip a year ago when I finally realized something was horribly wrong. Spent two nights sleeping by the Potty feeling like I had the Flu, minus the typical Flu symptoms. After months of Dr. games, I finally was diagnosed with Menieres. I finished all the standard protocol flow chart treatments by November with zero relief. My ENT refused antivirals stating there was no proof of benefit. I reminded him that his treatment protocol was a total failure for me and I decided to move on. Started JOH the end of November and the dizziness was gone within two weeks. I'm just finishing an extended cycle of pressure with the classic howl. Thank God, no dizzy spells or puking. I started to cut back on the JOH (No Ginko, reduced Lysine and Vinpocotine) when the bad cycle started. It has taken a month to start seeing relief again. I admit to feeling angry about all this as I am used to an active life. Even dizzy, I still pursued life on the Homestead without limitation. Now, I realize how my motivation ebbs. I can only imagine how much worse it can get. I read the heartbreaking stories hoping for some sign that it won't worsen. I do thank God for this forum as now I find this a bit easier to deal with knowing I'm not alone. Without this place, I would be lost with nothing to try. At least my GP agreed to prescribe AV's when I am ready to give them a shot. If the full course of JOH fails to get me back on track, I will ask for the prescription in July. I pray blessings and healing for all of you. K
Oneday, may I ask why you're waiting until July to get the AV prescription? If it were me (and actually it was this past Feb) I would get them started ASAP. All in all the antivirals are a benign medication as far a side effects, etc.....and potentially a life saver for those of us who suffer with this monster called MM. I totally agree with your gratitude for this forum. I rely on it daily to give me hope, strength and advice. So here is my advice.....call today.
My advice is to try the antivirals now. They are known to save hearing. Why wait? The sooner you attack the virus, the better. Wait too long and you might have permanent damage, or a stronger virus to contend with.
I concur. I'm on the full JOH and have been on the max dose AVs for 6 months now and my latest bloodwork was A+. Just watch the manufacturer of the generic AV. I believe I had a couple of duds along the way but the Northstar brand seems to be working. Best of luck.
I figure I will need to talk to the pharmacy about the mfr. I don't believe the Dr. controls the mfr of the medication.
I'm still waiting for my AV script to be called-in. Severe storms here messed everything up. I figure to give the AV's 3 months at 3000 mg per day. After that I plan to visit an otoneurologist named Hain located in Chicago. Time to hit it hard. I plan to continue JOH as it is the only regimen that seems to have helped lessen my symptoms by eliminating dizziness/vertigo. Thanks to all who kept pushing me, especially Scott.
Hain is a good guy and knowledgeable, but he doesn't have a great track record with actually getting anyone back to normal, because he is opposed to both antivirals and surgery (except in extreme circumstances). Those are really the only two things that have consistently proven to work.
Hain is also utterly dismissive of my alternative protocol (http://www.zoominternet.net/~kcshop/JOH.pdf).
One of the lessons that I learn from overcoming MM is that doctors do not proactively prescribe or even suggest anything that is insufficient evidence per criteria in their medical community. Dr. Gacek's antiviral treatment is accepted because it is a part of clinical trials, and these trials are, again, of insufficient evidence from their community viewpoint. So frankly speaking, I do not care what the doctors recommend or not recommend as far as Meniere's disease or others of unknown causes are concerned. We just want to get well. We know that antivirals and JOH are effective with many testimonials. That's a great thing.
He does the standard treatment and then tells you to live with it if that doesn't work. I found him to be pretty arrogant and close minded.
Sounds like the ENT I walked away from. Will need to look harder. Thanks for the info. guys. I don't wish to waste resources on another flow chart prescriber. Chicagoland is a convenient stomping ground. I still work in the area and commute daily to central illinois. I feel the need for confirmation of the ENT's diagnosis.