I have had menieres for 11 yrs. I have done a lot of the standard protocols: loso, diuretic, meniett device, (have had about 8 grommets over the years), upper cervical chiropractic (knee chest and Blair methods, even when to see Dr Burcon), massage, gluten free, and most recently I have taken a two week course of diflucan. Just ruling out if this was possibly a fungal infection in my ear? Anyway, the antifungal (along with a miserable sugar, carb, and fruit free diet) gave me 3 good days. Then back to the same old face down living. I have, in this most recent cluster, 1-3 attacks per day. The spinning is slower, think carousel as opposed to skydiving. They are short, about an hour a piece. Then of course it takes about an hour + to get your balance to walk. So my days are spent in bed staring at my tile floor hoping not to throw up. My doc and I agreed we would try antifungals first (I have 2 days left of a 2 week course, my 3 good days were last week), because of the shorter time frame to see if they helped, then we will move on to antiviral. I have a few questions for those using avs: Do you feel better like you forget you have menieres or just feel like you are merely surviving? Do you exercise? Drive? I haven't driven in four years. Do you eat normally or still loso? Should I try high dose vit c instead of going right to av? Should I ask for valcyclovir right off or try acyclovir first? My husband is wanting us to do regenokine but if I have a viral issue then that procedure would be a waste, right? I want to be rid of this monster but am so afraid of the destructive procedures. I hope I can find some answers here. Y'all are an encouraging group for sure!
Gardengal - the good part about your post, to me, is that clearly you are a fighter and haven't given up. That is the hardest part I think. I started antivirals just about a year ago. It took me 6 weeks at the 3x day (valtrex) before I started the taper down. After the first three weeks I felt better but not great so my doctor agreed to extend for another 3 weeks at full dose. Since then, to answer your questions: Do you feel better like you forget you have menieres or just feel like you are merely surviving? I wouldn't say that I ever forget that i have Meniere's...it is always in the back of my mind, but I feel great and can continue my life. Do you exercise? Drive? I haven't driven in four years. I drive and exercise. (Haven't tried riding a bike yet.) Do you eat normally or still loso? Eat normal. Should I try high dose vit c instead of going right to av? Never tried the Vit C route. Should I ask for valcyclovir right off or try acyclovir first? My doctor prescribed Valcyclovir so that is what I take. All of that said, if the antivirals didn't work for me and my cluster attacks stayed close together - I absolutely would do the laby. In my mind, while the surgery may be called "destructive" I can't imagine ANYTHING being more destructive than Menieres and the attacks we get. That is destructive - it impacts every single part of your life. Laby you recover and get back to life. It destroys hearing...but I lose hearing with every attack. Good luck.
Thank you for your response! I am 32 yrs old. I want more children and to garden and run again. I just can't settle for being bedridden. I wanted to know what to realistically expect with av. If I drove again I would feel so independent and wonderful. Do you guys on av do ok in stores or restaurants? My brain gets overloaded by all the stulation and I cannot stay. We get take out or I sit in the car while my husband shops. I have only heard bad about labys but I do see some folks on this board that seem to do quite well. What would be your options if the "good" ear was affected?
In July of last year is when I started having vertigo almost every day. Sometimes in public. It was very scary and very difficult. I started on acyclovir and JOH's Regimen. Five months later I switched to valtrex (valacyclovir) and was still on JOH's Regimen. I am on Valtrex. I went through about 3 months at 3 gms per day. Then I started OPC and continued with 2 valtrex per day. After 3rd day of OPC I had my last bought of vertigo. It's been almost 3 months with no vertigo. I ride bikes. Go fishing in canoe/kayak by myself. Drive, go to work every day. I go to the gym. I'm pretty sure I could even do a roller coaster. After 3 months on valtrex and starting the OPC I was feeling so good I started eliminating some of JOH's Regimen. Everything in his regimen is good for you. It's just I was taking so many things. I wanted to just try the Valtrex and OPC. Actually, I still have some Lindberg Lemon Bioflavinoids which I still take. I wish you well. I, too, tried anti-fungal in the beginning. It didn't do me any good. The valtrex is better than acyclovir for me. Some get great results with the acyclovir and JOH's Regimen. When first diagnosed with MM I was put on a low salt diet and diuretics. Neither did anything for me. I am now on a low salt diet because of blood pressure was getting a little high. For the last almost three months I have felt very good. Almost forgetting that I have MM. I think you should try to get the Valtrex and some of JOH's Regimen. The OPC is still in the experimental stage for me and a few others on here.
Admin Post A normal life is possible for many. A combination of JOH's regimen, vitamin C megadosing, and deep daily meditation did the trick for me and I've been in great health since then. Am active also, barefoot runs in the woods, kayaking, swimming, biking, mountain ziplining/rappelling, rigorous hiking, etc. No problems. Also lost around 100 lbs thanks to being active again! Others can do this. Do everything you can to exhaust all the possibilities. Try the easier/non-invasive stuff first and work your way up to the more drastic things. Hopefully you'll find what works for you one way or another. Ray
Gardengal: like Ray said thrown everything you have at the beast and work your way up the treatment ladder. You do not have to live with vertigo, you have options. Good luck!
Hi Gardengal I hope you find what helps you get relief. To answers your questions: Do you feel better like you forget you have Meniere's or just feel like you are merely surviving? I have MM since I am 13 I will be 63 next month, so no it is always in the back of my mind. Living in fear of the next vertigo attack for 5 decades, its a hard habit to break. BUT I have been symptom free since January 2013 due to being on antivirals so I do what I want when I want Do you exercise? Drive? I haven't driven in four years. Having it since I was so young I never was able to learn how to drive. Yes I exercise sometimes but I don't like too, I have never enjoyed it for some reason, but it has never brought on MM symptoms Do you eat normally or still loso? I never went on a loso diet, but I never cared for salty foods or taste, I eat normally except I do not over eat foods high in arginine(promotes HSV) Should I try high dose vit c instead of going right to av? My suggestion is to try an av first Should I ask for valcyclovir right off or try acyclovir first? valcyclovir seems to work better than acyclovir for some and that's what Dr Gacek recommends now.
I do o'k in stores and restaurants on antivirals. If the place is really noisy while I leave there I will have more ringing in my ears for a few hours; also makes me more tired (probably cause I am trying so hard to hear!). I think each person reacts different but for sure I would think a/v is a good route to try. Not everyone gets relief but it is a simple enough thing to try. (Simple if your doctor agrees!). I started to feel some improvement on a/v within the first few weeks so it didn't take long to get an understanding if I would benefit. I also have a prescription for Ativan that I take if an attack hits. I was told to place under my tongue. With that, it shortened my attacks to under 2 hrs where they were 4+ consistently of the room spinning frantically for hours. Also, the days that I was "off balance" but not full room spinning, meclizine worked for me to help control that piece. And that is available (in US) over the counter.
Thank you all for the great feedback! I am heading to the doc today to get antivirals. I have Dr. Gacek's article printed out. I am going to tell her I want to start with valcyclovir. She said she would check my liver and kidney function then would give me the script (last time we talked) so I am hoping for a smooth appointment. I am actually excited for the first time in a while, when I realized that the chiro stuff wasn't my answer I got a little disappointed. I tried that for a year and really hoped it would be my answer. I do have Ativan and I have the same response with it, takes the edge off the attacks. Love that it dissolves. It's not like I can move my head enough to take a swallow of water during an attack. So maybe a little worse before better on avs? But my trend should be noticeably upward in 3-6 weeks? Vicki, weren't you one that felt improvement in 4 days? A girl can dream.
great! gardengal I hope this is your answer to stop those awful vertigo attacks. Yes 3-6 weeks is a good amount of time to see if you are getting any kind of symptom relief. and yes it was amazing all it ook me was 4 days, after having it for 48 years at that time, truly a miracle for me. I still cant believe it hehe Some words of advice and suggestions: Many have setbacks but as long as you have any kind of improvement that's a great sign and don't get discouraged if a setback occurs. If when you reduce and symptoms return, go back up and increase and try again in another couple of weeks or so. It took me many months before I could go from 1200 mg to 800 mg ( I take acyclovir because I don't tolerate valcyclovir well). I went from 1600 mg to 1200 to 800. I was afraid to go from 1600 to 800 so I did it in baby steps. But it took me a long time to remain symptom free on 800 mg. Extra stress, fatigue, allergies, illness can all wake up that demon in our inner ear so if that occurs up your dose for those times. Be careful of eating foods that are higher in arginine than lysine. It very well may trigger an attack even on antivirals.
oh and I do just fine in stores and restaurants, loud noise and high pitched noise tends to make my tinnitus louder but other than that I'm good to go. all my life I didn't do well on bumpy trains busses etc, so I would avoid them. Last summer we took several day trips and one was to Dukes Farm which is like over 2000 acres and to see it all there was a tram ride over bumpy unpaved terrain. I was scared sh*tless but I said to myself this is a good test for my AV. So with heart pounding I went on the tram with my husband and I did have not one second of dizziness or wooziness and I was able to look to my right and left as the open tram was moving. I got off the tram at the end of the ride and usually before AV's I would feel like I am still moving on such things, even elevators. I was steady as can be. I was elated! Tears rolled down my face with happiness. It was a small thing but to me it was truly amazing!
Gardengal, I am also taking the antiviral Acyclovir. Unfortunately I didn't get the fast help from them that others here get but I've learned that I certainly do better on them than off. A Dr in Denver recently convinced me to go off my Acyclovir because she doesn't believe my mm is viral related. I reluctantly agreed to give it a try and within a week I was back in bed with my head spinning. I still get dizziness, aural fullness and tinnitus on 1200 mg a day so a couple weeks ago I started adding Lysine and Lemon BiFlavinoid and that has helped a little more. I would advise you to give it a good try and add Lysine to it if you don't get enough relief. Others here have had to add different supplements to the antiviral but whatever it takes to get relief I'm all for it. Good Luck!
Gardengal - I am hoping that you get your script today for the antivirals! I know that it is not the same for everyone, but my 3rd refill was filled with a different manufacturer (Milan) vs Northstar manufacturer and almost immediately I started getting the fullness back in the ear. I was able to get it refilled with the other and one time since a similar issue. So for me, while I never had issues with generics before, I do find a noticeable difference between manufacturers. I wanted to share in case you have a similar experience and wouldn't want you to give up too soon!
Santa - a roller coaster! Crazy.... Nic - I will check, I forgot to ask today about manufacturer. I did get the script though, no prob. BIG pills. Vicki- I can really relate to the tram ride fear. I have taken so many little things for granted. Seriously, if I could drive alone to the store with the sunroof open and music loud I would cry when I got there. It would be HUGE. Right now I cannot turn my head to "look both way" nor can I stand the noise of the wind or the music. Hopefully that will change. I am also taking lysine, pycogenol, and lauricidin (came in mail today). Wonder if I should only to av for a while or ok to do all these things.....thoughts?
I think so too, that you should do just the antiviral and see how that goes for a few weeks. If needed you can add the other things, but if you take all those at once you will not know which is helping which isn't helping and which may be causing you a side effect (chances are none will) Good luck! keep us posted!
Mylan. From India. Should I keep taking these and just get next months batch from Northstar? I live in a small town, the pharmacist is so nice, I'll call them in the am. I need my best chance at this working.
Today I picked up the Northstar valcyclovir. I hope they help me. I have been on the Mylan brand for the last week. Tomorrow will be one week on av. For the last 2 1/2 days I haven't had a spinning attack. That's the first bit of reprieve in 2-3 weeks. I know it's probably not the avs working yet, but I am not complaining either way. Today I am having pulsatile tinnitus, usually an indication that spinning will happen at some point. Time will tell.
For me the Northstar works much better than Mylan. Northstar is a big blueish pill; Mylan is white. Some people do get relief right away from a/v. My vertigo was always clusters vs ongoing so when I started the a/v I wasn't in a "cluster" time so hard to know if it would/could have stopped those quickly. But as you said, either way you are having a couple of good days!! Yeah! Good luck. Hope your streak continues!
You might like to look at Papajoe's success story, he's a member of this forum who found relief through an anti fungal approach. https://joebongiorno.com/menieres-disease