Hello to everyone. I , as I am sure all of you when you came here. are just looking for relief. I started having random vertigo attacks in my early 20's. The full blown vertigo were few and far enough between that I managed to live with them. My mom got them from time to time so I figured I just 'inherited it' As I hit my 30's things got worse. I woke up one day in a complete foggy haze. I was woozy but not incapacitated. I was what felt at about 50% mental capacity. I had to concentrate super hard to even think or do things. I had horrid Tinnitus. I could barely do my job anymore. I was in a bad way. I went to Family Dr's ENT's.. Internists. Basically it was.."Hey have some meclizine and go away". That just made me sleepy and I would wake up just as fogged over as before. I researched and researched and waited 8 months to see an Otoneurologist. I HAD HOPE!!!!. Actual hope. Now at over a year into hell I was hopeful he would find something. Well after ear tests and every dizzy test known to man that brought on a HUGE vertigo attack.. The Dr then told me "Well the tests made you dizzy. Which is what they are supposed to do . So that means there is nothing wrong with you" GREAT. I thought. How come I feel horrible if I am fine? . I kept fighting. I kept researching. I found JOH's treatment and low and behold about 6 months in the fog lifted. I could think. I could concentrate. I was only at about 80% of what I was before but I felt better. I still had the occasional Vertigo attack but only every year or two...Things were livable for 15 years... WELL.. Flash back to 4 months ago. After literally laughing out loud at a coworkers joke and flapping my head down sideways on my desk. I raised my head. And THERE WAS THE FOG. There was the concentration issues. The horrible feelings. The more pronounced dizziness. I am back to where I am. I am scared to drive 15 miles from the house. I am scared to go to movies. I am scared to move my head even.. Even the Christmas lights on my neighbors house make me nauseous. I was lucky enough to find a Canadian Expat Dr in Houston who prescribed me SERC which I ordered from Canada. YAAAAAH. I thought this was the holy grail to fix me for the last 20 years of suffrage. Unfortunately I was not able to stay on it more than three weeks as SERC gave me horrible insomnia and when I did sleep I had the worst vivid dreams ever. Due to lack of sleep and having to work I had to abandon my SERC treatment. Which sucked because I had wanted to try it for 15 years. I am here to renew hope. I am here to look through your journey's and your fights and find guidance and hope and treatments. I have never officially been diagnosed with Meniere's as doctors around me seem to want to just generalize VERTIGO and move on from there. I am contemplating going back to a specialist as now there seem to be more than 20 years ago. I am going to try acupuncture this weekend (Yes I understand the skeptics) So far I am looking to tweak the JOH treatment. I saw a post on here about 3000mg of lysine. Currently I take a 1000. I do have HSV1 . So perhaps that is a first good thing to try. I had bumped my vinpocetine to 10mg TWICE a day but I was on the SERC as well and slowed down my Vinpocetine to 10mg once a day once the insomnia had started because if I take Vinpo too late in day it tends to increase my heart rate and keep me awake. I never did the Ginko part of John's treatment. As the other steps seemed to work very well. Sorry for talking so much. But it at least got my mind off my tinnitus which has been ROARING for months now and I am on the verge of stabbing an ice pick into my ears.
Sorry that you're here, but there is a lot of good info here. Here is a link to Dr. Gacek's seminal paper on antivirals. It has eliminated symptoms in hundreds of people. http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf
Since the feelings returned after a lot of head movement, I wonder if you might find some benefit from NUCCA. I have been going to NUCCA for several years now. I am not sure if it eliminated the vertigo but it immediately addressed neck tightness and headaches (which is not why I started). You could have something cervical causing the vertigo.
I trust you have had a full work up to rule out other causes. Dont know where you live. I sure would personally recommend seeing Dr Tim Hain. Here is a link. JOH is mentioned in his writings. So I will let that speak for itself. Lots of links you can click through on this one document. I found him to be very attentive and stick with you until you get it fixed. Here you go....good luck....(you may have to cut and paste) If the link is not good then just Google....Hain Menieres.... http://www.dizziness-and-balance.com/disorders/menieres/menieres.html Also I agree on the head movement comment above. Be sure to mention that to the doctor. Check for BPPV etc. S
Hain is a very smart guy, but he is opposed to both surgery and antivirals, which are the only two things that have worked for most people on this forum. But he would be good for ruling out everything else.
I have had complete workup in the past.. The Dr's at the time (2008) did not really seem to say much other than meclizine.. Which I cannot take and function normally due to being drowsy constantly..I should go back for another workup being it has been 10 years.. The JOH treatment has worked very well so I just did not go back as the Dr's seemed to offer little more than treating the attack once it happens not treating the causes of the attacks which frustrated me. UGH really not ready to start that DR journey again but I guess that is where I am headed.
I understand "ugh" on a doc search. scott tom above is right about Dr H ref surgery. His is not a surgical practice so he keeps that as an option of last resort. Ive spent a lot of time with him and he is not actually opposed to it at all....as you will read in his articles.....he is just not enthusiastic about having to reach that stage of treatment. My primary specialty care provider is a surgeon and he wants me to do a second laby (both ears). Talk about "ugh". Ha ha ha. No way. So somewhere in the middle lies the truth. Also what is interesting to me is that most all of Menieres patients have remission over time if they wait long enough. So anything we do that does no harm....and buys time....it becomes a miracle cure. My big name doc I go to told me that time is the #1 healer of Menieres. But some of us have it worse than others and more direct intervention is needed. By all means try pumps, antivirals, low salt, serc, whatever. I did them all. No luck. But ended up with laby in one ear and hell in the other. But over time if whatever you try fails more serious protocols (which work well) may be in order. I remember the day when my doc looked me in the eye and said I can make the spins stop ....100% for sure....he said if we kill it then it can't send vestibular misinformation to the brain. You can't have an attack. He was right. Laby was my cure for many years. Only we didnt talk about going bilateral. Hang tight. Go to Chicago and see Hain. Wealth of information. Read all of his stuff first. Sun will come up tomorrow man. S
Being in Houston.. And my wife has been out of town for a year straight taking care of her terminal mother. Unfortunately me traveling right now is difficult. But . Always a possibility. Time does seem to help a lot.. It has helped in the past.. The worsts are right now. When I am fogged and mentally compromised. And sitting in my office at work with no AC on and the deafening "weeeeeeeeeeeeeeeee" screaming in my ears from the tinnitus. It is just sooo defeating. Right now I feel like at age 43 I have hit my peak. I fear when I am over these humps that eventually a hump will come and I will be stuck in it for the rest of my life. I think "Is this one it?".." Have I peaked at 40? Am I going to be in a downward roll from now on with worse and worse balance and hearing loss and more tinnitus and unable to function? Is this life now? So.. After your surgery. My brain is confused by that. So if you kill the bodies ability to stop the bad information. Does good information get through?
So.. After your surgery. My brain is confused by that. So if you kill the bodies ability to stop the bad information. Does good information get through? My understanding is that your other balance sensors (other ear, eyes, legs) compensate (may take a few weeks) and your balance issues are resolved. You don't need "good" information coming from your bad ear you just have to stop the erratic signals.
Also from H-Town. If you want to attempt the anti-viral route Dr Jing Shen is an ENT at Houston ENT that advised while she isnt convinced that it will work on Meneires she was fine with my trying whatever is needed before I move to the next step (steroids then gent) and prescribed me generic Valtrex without a fight. She also was very quick to pick up that it was Meneires and had it confirmed with testing within a month. I've also talked with the top neurotologist at Baylor COM in Houston (Dr Vrabec) and he is not a believer of antivirals or any non-destructive surgery (not a believer of EDB sadly). He advised that if after diet, my JoH supplement, and antiviral treatment fail then the next steps are steroids > gent > VNS. So far I am doing okay with the JoH and antivirals. There have been a few hiccups recently but I am hoping this is just the 3-6 months that people warn about before getting close to normal.
awesometx....I had my first major attack when I was 22 years old walking across my university campus. I had a full career in the midst of all of the havoc. I am now 62 years old. So you are gonna be ok man. You are just warming up good. But I understand how you feel. Live it a moment at a time. You sound much more sane and alive than most people I know that are fully healthy. You the man. research labyrintechtomy (sp?) via Hains info or any Goggle search. its was actually pretty simple but yet dramatic too. They just went in and cut out my inner ear. I barfed for a couple of days. Then a little dizzy. Then I was fine. But had to sacrifice the hearing forever in that ear. The spins of vertigo are caused by signals going from the inner ear to the brain....and its all scrambled and confused data. Once the data source is gone...you cannot have another spin. (from that ear) tellsdale is correct above that the other balance engine (the other ear) takes over and flies the plane straight. It was awesome and allowed me to get on with my life. Now you do have to know for sure which is the offending ear. All done by objective testing. And its probably the one that is ringing and you know which one it is. But I did end up with it in both ears so now my one balance engine and hearing receptor (the non laby ear) is bad so its pretty strange. Even then your brain learns to find a way to balance your body and being deaf is not the worst thing that can happen to me. So life is good if lived in each moment. peace to you. holler back if you want to talk off the board. s