Med Student 1 year post-diagnosis... just found the forum.

FANTASTIC!!! Whatever works...just keep doing it

As for being Zen - yes, something like Meniere's will snap life back into perspective Although it's easy for me to get caught back up in the worries of school and day to day. Now, when I start to lose sleep over something like a test, I just think to myself “Midterm? At least you’re not losing sleep because the world won’t stop spinning” and I settle back down.

Very little in life is really so scary as to warrant the damage caused by stressing over it.

I do wish you the best of luck in finishing your MD. I really believe your perspective on chronic illness will not only make you a superior doc, but an FAR superior doc (I did a lot of medical advocacy BEFORE my diagnosis – and I’ve run into some real gems both then and since). The field needs better docs.

 

welcome east--I haven't been too active at the site recently, but enjoyed reading your posts--sorry you have the curse but glad you found us--also very glad there will soon be a highly trained professional who has lots of empathy for we deaf and dizzy folks

we are all hoping you will do a residency in ENT or neurotology and we can then get all the best advice simply by posting messages to you!

(that is if you can still hear the sound of one hand clapping...)

 

I am very interested in ENT, but the residency system is yet another part of our medical system that is (in my opinion) broken. I'm in the top 15% of my class, but to get into ENT you just about have to be #1 or 2. Desire to do it doesn't matter, and too many of the people who do get those very competitive residencies do it for all the wrong reasons.

Ok, ok, I'll put away my soapbox now

 

I hear you. But you will make your mark having had this experience. Who knows how you will put it all together in 10 or 15 years but you will.

 

So I started the John of Ohio regimen a few days ago. Honestly, I was right in the middle of an attack when I started, and it cleared up. I'm keeping a close eye on how this regimen turns out for me, but I'm also considering doing a few other things like switching to decaf, which would make it very difficult to tell what, exactly, is working. I started taking the whole regimen at once, which is also not a great way to figure out which parts are helping. Sorry about those things. Like all of you, I'm more interested in hearing some Dio and Led Zeppelin distortion-free than running my own clinical trial.

 

Vitamin B had an immediate impact on me, good luck! Lisa

 

Welcome to everyone! So glad we have new members of our group!

take care
Tuck aka Danny

 

Exactly. I spent quite a while doing 'research' and being disappointed when I got partial results. Then, hearing Dr Derebery say regarding my allergies that it was not thought to be the origin of my hydrops but that allergies could 'up-regulate' the immune system, I began to be comfortable with the idea that there were numerous contributors and chipping away at each of them. I have found that the more I remove the layers with allergy shots and antivirals and the better I get, the easier it is to see a link between certain environmental factors and my symptoms. When it was really bad it was impossible to sort anything out. Besides I just want to hear music again too.

 

You've got alot of wisdom for what I assume is your "young age", Stingray. Unless you are a 40 year old med student.

Before I start rambling, let me say this. Do what June said. Contact Dr. Jennifer Derebery at House Ear Clinic in LA. Make an appointment for your winter break. Go there. See her. I promise (I'm a lawyer and lawyers don't lie), she is THE person to talk to for MM and AIED in the United States.

I am in my late forties, and this madness (AIED for me) began just before my 40th. I am a trial lawyer, and make my living trying lawsuits. My work life has become much more difficult since this began, slowly but surely. I've aggressively sought treatment and consultation with some of the finest doctors in the nation if not the world, in specialities such as Neuro-oto, oto, rheumatology, endocrinology and hematology. Some cared and spent extra time to try to help me, some did not. All failed.

I went to see Dr. D in August of this year and at her request saw one of the several rheumatologists that she works AIED cases with. Placed on famvir and plaquenil. After three months on Famvir, the tinnitus, ever-present since July of 1999, has mostly disappeared in one ear. I made a 20% increase in several frequencies in the other. Never in the past 8 years have I ever had any good news about all this until now.

If you can't afford to go there right now, talk with your docs about famvir or similar drugs. But I urge you, especially since you are in med school, to actually visit with her and pick her brain. She has information and theories that no other doctor you talk to is going to have (unless they have read her research).

If I could go back in a time machine 8 years, the very first thing I would do is go to Derebery and get on Famvir. Out of the many things I have tried, the only other thing that has worked has been prenisone bursts, but if you think they are rough in your twenties with a high stress job, try taking them in your late forties, with a high stress job like trial lawyering, supervising a college student, raising a smaller child, being married and trying to have a functional life.

I too, have been prednisone responsive. I hope that you indeed to remain asymptomatic and that this all goes away. For me, that didn't happen, and every time I have an attack I lose just a little bit more hearing.

Finally, just so I'm clear on this (I am kidding now), try to go see Derebery. There is a thread on this forum I started that talks about places to stay, traveling there, and things to do while out in LA. Her nurse is Angela. Angela is very nice. I promise this visit will change your life for the better, and you'll come away from it with a far advanced idea of what you may be dealing with. Given your assumed great knowledge of physiology and how the human body works on a microcellular level, I bet that would be an excellent conversation.

 

I can't find anything on plaquenil, but I did pull up a couple of clinical trials on famciclovir (famvir) and they didn't show results over a placebo (2 clinical studies). I work for a rheumatologist here at the hospital on-and-off when I have time. Maybe I'll ask her about it.

 

Bek, you hit it on the nose when you wrote " but it is easier to accept your problems if it has a Name". I have not been diagnosed with Menieres, all the doctors will say is "vertigo" ???. Once I discovered this site, I felt right at home, the missing piece of the puzzle was found. I have hearing loss in both ears, the right one is worse. I get very light headed (being blonde has nothing to do with it) , I am never alone as Nausea is always with me. I was advised by my ENT not to get stopped by a traffic cop as I am incapable of walking a straight line. The MRI shows a tiny tumour, which is being watched, but supposedly has nothing to do with the "vertigo". Sleep is the only real relief I get, but one should not have to sleep their life away!
So, good luck to you future doctors! Unfortunately, in order to be the great doctors that I am sure you will be, you have to go thru the experience inorder to understand it. All the best to you.

 

If you talk to Dr Derebery (she did the study) she will tell you that there was improvement over placebo in hearing but that the study was not intended to look at hearing so it was not properly weighted to make that claim but she sees efficacy in some cases primarily in people with milder more recent issues but in one case with a severe hearing loss. As for vestibular issues, I think what she found was a really curious result where nobody or few in either group had vertigo during the study something that she could not explain. I think what you will read in the abstract is something like more study required. I certainly do not speak for her - I am a patient who has seen her once - but this is my recollection of the gist of what she said. I believe she has explained it similarly to other patients. But she is a scientist and does not make claims that do not meet the statistical test but that does not mean she does not use the drug where she thinks it is indicated. Go see her and get the info from the horse's mouth, she will share her knowledge and not try to sell you on any theory. If you look at the test results you will see that few if any of the drugs that dr's commonly prescribe for Meniere's have any double blind tests to support them and this includes a number of surgical techniques. Why they are willing to rx other more risky drugs off label - some not even fda approved - when there is nothing but tradition to substantiate their efficacy but become holier than thou purists with regard to antivirals I do not know. I only know it worked for me. You are familiar enough with drugs and labels to know how much risk there may be for you as an individual to give famvir a try. Loyalty to traditioin vs cure. A dilemma for these doctors. I really think they feel embarrassed to seem to be getting direction from patients. I myself did not respond to prednisone in which I had so much faith that I took it not once but argued to try again. I also tried histamine shots, diuretics (both of which made me sick), estradiol (distortion was thought to be open etube) which made my hearing worse, flonase which had uncertain results and then because my family dr thought it was worth a try not because I had faith in it, I tried acyclovir. Bingo!

I don't intend to be a 'proponent' of antivirals. I don't think they will work for everyone. THey may not work for more than a handful. They did not 'cure' me. But it ended the constant distortion, kazoo like autophony that ruined my every spoken word, allowed me to enjoy most music again and basically gave me my life back. These distortion issues are invisible to the doctors because they do not show up on an audiogram. I believe this is why they do not pursue some of the treatments that are so successful with distortion. And, oh by the way, that VERY LOUD jet engine tinnitus is now a motor sound that I only hear when I am in a very quiet environment. It toned way down with the acyclovir. Also, counter intuitive to me, the allergy shots seem to be helping a lot too. I regret that I waited as long as I did to see Dr Derebery out of a sort of loyalty to my oto who did acoustic neuroma surgery on me 10 years earlier and to whom I felt a personal gratitude despite his inability and frank disinterest in figuring out what might be going on with my cochelar hydrops other than to follow 'the book' such as it is.

 

Antivirals have not cured me either. Nor are they likely too. But if I can stop or slow the progression, I'm a happy man.

I'm not preaching famvir or plaquenil either. But I do urge anyone with the means to go see Dr. D in LA if they suffer from meniere's or AIED. As I said before, I wish I had gone to see her 8 years ago.

 

Stingray,
Just wanted to say hi and welcome to this wonderful forum. I got MM during law school (specifically during winter finals, right before Christmas), so your initial post sounded eerily familiar--it brought back memories trying to cook a healthy low-so diet and study and show up to class and do my editing job while totally whacked out on steroids and schlepping all over the city to see various doctors, have MRIs, etc.

Anyway, I sympathize. Great to have you here.

Katie

 

Hi and welcome. Oh my, sorry you are dealing with this. you have come to the right place, lots of support, caring, people.

Take Care