Oh my gosh...in October I had my first ever severe vertigo attack. Scary room spinning vomiting for 6 hours that came out of nowhere. Then another two weeks later. Made my way to ENT, did the MRI, diagnosed with Menieres as I also have some hearing loss, tinnitus, and that awful sense of fullness. Put on diuretic and told to lower salt. (Did not lower salt) Then another attack, then nothing for a month, then January and February were a special kind of hell with severe vertigo about 2x per week. Tried giving up wheat, dairy, sugar, and alcohol for 30 days with no difference. * Saw acupuncturist and got some relief from tinnitus and fullness * Saw chiropracter (applied kinesiologist but not the type you all suggest) and that actually lessened the severity of attacks--no more vomiting but still dizzy enough to be disabled for 6-8 hours with the ensuing exhaustion. * Seeing craniosacral therapist--can't really tell anything will stop this Got the steroid injection about 3-4 weeks ago. Had 2 attacks in the week after, then two weeks with nothing and thought I might be in the clear....then severe dizziness last friday and mild this past sunday. Found you all on Monday or Tuesday. I just started the John of Ohio regimen today with the lysine, lemon bio, and vitamin c. Have other stuff to add in gradually. I also called and got a Valtrex script from ENT. He doesn't think the science is there but said okay. He gave me enough for 30 days 1500 with no refills...we'll see. ANYWAY, so not happy to be a part of this bizzare club where I never know how my day will go and have ended up on my boss's office floor vomiting, etc. But SO glad to have found you all and have a plan that has worked for folks that is better than "live with it". I've been an avid motorcylist and this is messing me up big time. Hope to get back to riding in the near future.
Oh and dramamine or meclizine didn't seem to help at all. If I have an attack at night Valium and Phenergan at least knock me out. I don't vomit like I did initially so I can at least keep things down. I was given ativan and have actually been taking daily for last month both to hopefully supress vestibular system and because of the anxiety produced by not knowing when it will happen--I commute an hour and fifteen minutes away every day and take a toiletry bag with me just in case I can't drive home.
Welcome CatofSail! Yep MM kinda sucks. Make a point to be consistent with the JOH. It has helped lessen the severity of my symptoms by 90%. Reduced sodium intake also helped me a bit. Every sich is different. You gotta take the bull by the horns to find what works for you and to research your triggers. Nice folks here. Lots of info and encouragement. AV's have helped quite a few folks who frequent this BB. My attitude about MM is best represented by "Git after it"! K
It's good the ENT was willing to try the Valtrex, but 1500 is not enough to start with. You need to find a doctor who will script it properly at 3000 mg per day to start. Any doctor or nurse practitioner can script it, you don't need an ENT for that. Also, make sure you take the lysine on an empty stomach 3 times a day. Good luck!
Hello CatofSail. I too was thrilled to find this site and find myself looking at it daily for suggestions/testimonies/support and general inspiration. So many here can totally relate to what you've been experiencing. It truly is a life altering illness that effects everything we do and challenges everything we once believed ourselves to be. However, as you'll find from listening to others who share your issues, there is reason for hope. I also will add that I totally agree with what Scott Tom said about the 1500mg not be sufficient to fight the possible virus. I have been on 3000mg daily for the last 18days and have felt more "normal" in the last 11 days than I have in the previous 10month. I have had a few hours of "uneasy/off" during the last 18 days, but from what i've read this is to be expected. I'm beginning to get my life back and trust that this course of treatment will truly help me control this demon labeled Meniere's. I did add Lysine to my regiment about 11 days ago and will start the other JOH suggestions soon. Good luck with your journey thru this. Hope to hear soon that you're feeling better.
That is such great news! I wish i had found the answer so early on. I could have saved years of suffering. I'm really happy for you!
Thank you Scott Tom. It was thru this website that I connected a few dots for my particular situation. This course of action made sense to me versus what the Hopkins ENT wanted me to do. Again, I'll say, I'm keeping my fingers crossed that I've found my answer. I still have that flicker of fear that I'm only in an off period of this illness and that it will once again rule my life. I still have weeks to go before I decide to lower my dosage. keepin the faith.
Thanks you all! I also just realize ENT prescribed it as 500mg 3x a day. The script is for 30 pills with no refills. So ten days worth at a lower dosage than what sounds ideal. I see another doc next week and will ask. Forevergrateful--so good to hear!! I hope it continues for you.
thanks. I appreciate the words of encouragement. As for you....though I am no Dr, nor do I profess to have any medical training....If it were me, I'd start with two 500mg three times a day until you see the next Dr who will hopefully increase the dosage to the necessary dosage.....but this is just what I would do. In fact that is what I did while I waited for my Primary Care Dr to order my new script. I didnt want to waste any time getting started. Just sayin.
Does anyone know off the best study to pull out to show that the dosage should be that high? I would like something to show him when I make new request. My Gyn that I saw did not want to "step on the ENT's" toes and prescribe it for me. She did agree that 15 days of treatment would not be sufficient.
Here you go. http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf Gacek also says that it's ok to go longer than 3 weeks at the max dose.
So....since starting John of Ohio protocol (first 3 supplements) and taking Valtrex (at lower than recommended dosage) I have gotten dizzy maybe twice. I wouldn't call it vertigo and I AM STILL able to function. That's new. Any other time when I've been dizzy I've been unable to function at all. Is this a good sign? A normal transition? Or just part of the weirdness of MD?
For me, after 3 weeks on JOH, I noticed my dizzy spells fading away completely. Prior to that I was on a 30 day cycle of good/bad. By 6 weeks, I was kinda sure it was helping. I've been on it for 4 months now. Hydration is also important (say no to yellow snow). I'm not on antivirals at this point. Mr. Tinnitus is still my constant companion. I do the full complement of JOH minus the vitamin C as it makes me break out in cold sores. I'm also on fish oil, red yeast rice, d3 and a few other nutrition supplements. Stay consistent. Some say it takes them months to see any change.
I'm so thankful for this forum. I've been on 800mg of Acyclovir 3 x a day for almost 4 weeks. I've been feeling better but I have no idea what's making me feel better and I hate taking medicine but so far I'm complying.
Catofsail, it is tough for anyone to say what is a good sign. Each case of this beast seems to be a little unique but the ups and downs do seem to be constant. I had great relief from JOH regime for years then I got lazy and didn't follow it strictly and relapsed. But even after I began strict adherence I started getting different symptoms - less severe vertigo but longer lasting disequilibrium and more pronounced hearing loss. Then good relief from antivirals but then I received a refill from a different manufacturer of the antiviral and now many dizzy days and crazy tinnitus. I've been at this for 27 years and I'm convinced it will be a lifelong battle for as many "good" days as I can get. I'm sorry if that sounds discouraging - I don't mean it to be. Many here have found years of symptom free living. I'm just saying you have to be ready to battle this thing. All the best health to you!
Thank you Teesdale. I've been dealing with it for about 7 months now. I haven't wrapped my head around it. I had nine symptom free days and had big plans to go out riding my motorcycle because I thought I was fixed. Then bam, more dizziness. I'm grateful I'm not getting the severe vertigo like I was it's still incredibly dehabilitating. That was last Friday and then yesterday at work I got dizzy and nauseous. I used my back up plan and went to a hotel across the street and crashed for the night rather than try to get to my home which is a little over an hour away. I just started trying to exercise lightly this week which felt good. I'm going to go try and take a salsa boot camp on Saturday and all my friends know that I could have cancel or stop if I get dizzy.