Meniere's and a Virus Connection?

Re: Virus Connection?

maybe a different anti-viral? could be a resistant strain? just a thought. also treating the hydrops with some sort of diuretic as well. we have multiple things going on in MM while they may be linked in ways, some symptoms are individual and need to be treated as such. I have yet to find a combonation that works for me, still in the trial phase. Although I will never stop my diuretics again. I gained lots of weight and had a horrible time with symptoms. while my symptoms are yet to be controlled by diuretics alone I know they help a little bit. Keep truckin along and hopefully your beast goes back into remission for another 3 or more years )

 

Re: Virus Connection?

Hi Guys - Let me give you my background with my history of herpes and hydrops: I started with bad herpes when I was 13 years old. I got the blisters in my throat so bad that I could not eat solid food for 1 week and I also ran a fever of 104. I would get a breakout like this about once a year and it usually came on when I am under stress. This lasted until I was around 30 and I have not had a breakout since then, except for the common cold sores that you get on your lips.

My hydrops started about the same time that the herpes disappeared. I was diagnosed with endolymphatic hydrops in the spring of 2000. I went through 2 or 3 years of daily dizziness, ear fullness and tinnitus. After that my symptoms started to disappear and would only come on if I got really stressed out or I drank coffee. I could drink diet coke but not coffee, but the symptoms would always disappear in 2 or 3 hours. In February of 2007 after 2 -3 months of extreme job stress, my hydrops came back with a vengence and now is in both ears. I read the posts on treating MM with Aclivocor (sp) and I immediately contacted my Octoneurologist. He said there is no connection between herpes and hydrops and would not consider to give me a prescription. I then went to my PCP who gave me the prescription for a 3 week 3 x day dose of 800 mg per dose. I took the pills for the three weeks and had little to no relief from my symptoms.

In my case the Aclivocor did not work, but that doesn't mean it will not work for other people. I really thought with my history that this was my ticket back to normal living. I was wrong.

If anyone has any suggestions I am open and willing to listen to anything.

Thanks,

Tim M

 

Re: Virus Connection?

Vestibular disturbances can be caused by virus and the chickenpox-shingles or Varicella zoster virus is a common one. It lies dormanant in the trigenimal nerve and if it becomes active it spreads to the 8th cranial nerve or the balance and hearing nerve, where it causes many symptoms ... dizziness, vertigo, or it may result in Endolymphatic Hydrops where the symptoms may include vertigo, tinnitus, hearing loss, vomiting, dizziness, and pressure. Many suffer damage to their trigeminal nerve also and experience trigeminal neuralgia. Meniere's disease is simply a label given when the doctors can't find a cause. A Meniere's disease label is given by symptoms of repeated episodes of vertigo and permanant hearing loss. The problem arises from insurance companies and lawyers controlling medicine. They tell the doctors how to do their job and what codes and billing procedures to use. A real diagnosis requires "diagnostic testing" which involves lots of time and money. Most ENT's do not have the equipment and knowledge to diagnose inner ear problems, so they call any problem with vertigo, etc, Meniere's disease. If ones symptoms started after a trauma, IE whiplash,etc., then there is NO disease involved. It is simply hydrops secondary to a trauma event. If virus is present then it is hydrops secondary to the virus. The virus is the disease, not the hydrops. MS can cause hydrops. There are several diseases associated with hydrops and other vestibular disorders.

Meniere's disease has NO cause it is as mystery ... a self created mystery by the system (doctor insurance lawyer) failing to diagnose a real disorder or disease. Atypical meniere's means not typical meniere's or basically is saying, "I don't have a clue and don't care."

Dr. Gaeck is the expert on anti-viral therapy. If you doctor is uncooperative, find another. Any good internal medicine doctor can prescribe acyclovir or valtrex. Famvir is not very effective for vestibular virus. Purchase a copy of "Viral Neuropathies in the Temporal Bone" by Dr.'s Gacek and Gacek. Loan it to your doctor.

 

Re: Virus Connection?

Also keep in mind that there is a list of probable reasons other than virus for meniere's. I would not trust a doctor making such a factual statement out of something there are no known definites for.

 

Re: Virus Connection?

Hi Sam,

Great post! I appreciate your well written first post - I don't think I've seen Menieres described any better in such a concise way.

Hope you'll continue posting. Glad to have you here.

-Mark

 

Re: Virus Connection?

Ditto Sam, and welcome!!

Great post....do you have personal experience with anti-virals????


Laura

 

Re: Virus Connection?

Yes, experience with Zoster virus for 8 years. Experience with Famvir, Acyclovir, and Valtrex. Famvir not too effective for vestibular virus. Acyclovir best cost wise and Valtrex (salt of acyclovir) best for vestibular virus but not cheap unless you have 100% insurance. I have read Dr. Gaceks book, have my own copy, and also studied it for several years now. I have loaned it to my primary care physican and internal medicine doctor who bought their own copy after reading it. It was recommended by my Neuro-otologist. I have had chickenpox, shingles, cold sores, mouth ulcers, rectal fissures, deep And/Or Subcortical White Matter Hyperintensities, and have trigeminal neuralgia all from the Zoster virus. Yes, I do have over 50 years experience with herpes virus and 5 years with Endolymphatic Hydrops. I have written 3 books centered around hydrops, one deals with virus, and host an online hydrops webpage and email over 50 people monthly discussing this topic. I would say about 70% of them find out they didn't have a virus, but hydrops was from trauma or other disease. 2 recently were found to have schwaanoma's and are waiting now for Dr. Breckmann of LA to remove them.

 

Re: Virus Connection?

Give Acyclovir a try folks.

 

Re: Virus Connection?

Amen brother ... can't hurt as side effects of acyclovir are rare and none life threatening. If it is virus best to suppress it now ... later is ugly ... real ugly...Zoster virus is for life and so is hydrops. No cure just control and acyclovir is the way to go for virus...If you ever had chickenpox, you have the virus for life.

 

Re: Virus Connection?

...No appology needed, I was just confused. Thanks for the explanation because that could be a thread all it's own "The Good, The Bad, and The Ugly of our Doctors". It amazes me what others have to deal with their doctors. Your is probably a very good doctor but sounds like he puts you through the wringer to try anything.
...I went in to my doctor for my annual check up and blood work and he said, "here's a prescription for valtrax, I read where it may help with Meniere." Completely unsolicited and of course I tried them and didn't see any improvement but that was after I got rid of my vertigo attacks and just now deal with teh tinnitus, fullness, and hearing loss. Plus too, the virus may come and go and that us oldtimers are just dealing with the damage the virus left behind.
...BTW, I think Benadryl is a wonderful and underestimated drug. It was my only relief to my Meniere's symptoms for years, until I found my triggers. Even though it didn't prevent the vertigo, I could tell the difference in my dizziness and brain fog, when I didn't take it.
Rick

 

Re: Virus Connection?

My problem is. When it comes down to Dr. Visit day. I forget, THEY work for US, not the other way around. If a doctor isn't providing service to you that you would expect (Within legal limits and ethics of course) you can tell them to step up their game or send them packing.

When I sit down with my doctor I pretty much babble and nothing gets accomplished. I must DEMAND from now on that what I want goes. )

 

Re: Virus Connection?

He or she who has the power makes the demands. That is true for any relationship. Unless you have the power over your doctor, which I really doubt, making demands would only alienate him or her. You don't want that. What you do want to do is satisfy yourself that all of your questions are being answered and that you are receiving the time needed to get the most from your doctor that you can. That can be done without making demands.

 

Re: Virus Connection?

Try a different approach ... not demands, but request. The doctor may not comply as they are regulated by insurance and lawyers. If something goes wrong, who will you blame? Yourself? No, the doctor and your lawyer would rip the doctor up for complying with your request, if the doc knew better.

Here is my method ... request ... and if the request is denied, then ask them why. Make them explain. If you babble or get confused, go in with notes and take notes, or have someone with you to do so. My Neuro-otologist asked patients to do this, especially on first few visits. If your doctor fails to explain, then you go packing, not them, and find another doctor. You can demand your records, etc., but you can't demand certain treatment, but you can request it.

One always has the right and should in my opinion, question any doctor telling you, you have Meniere's disease. Your are paying this doctor for a diagnosis and didn't get one. Several doctors have joined in the E.N.O.U.G.H. campaign ... "Just say no to Meniere's disease." It is unacceptable. Request a diagnosis or keeping looking for a Neuro-otologist that will render one, then and only then will you receive treatment. If you believe you have this horrible mysterious Meniere's disease, then you will have to be your own doctor because by your doctor giving you this label based solely on symptoms, they have failed you. A doctor should give test to find what is wrong, not give test to rule out. I quit going to one neurologist because this was his method, rule out, instead to testing for the specifics. My new Neurologist did ONE test and figured out what this other doc couldn't. My point is if you have to demand treatment from your doctor find another. Doctors using the NEGATIVE approach to diagnosis, instead of the POSITIVE approach, don't impress me anymore. If you have to demand from your doc, then they are negative oriented and everything will be headed in the wrong direction from the get go. Just my opinion from my experiences. Well, gotta go now for my monthly electrolyte test to see if my sodium is still low. Up to 4 grams daily with reduced Tegretol (my normal is 3grams or 3000mg daily).

 

Re: Virus Connection?

...I think everyone does that or at least I do. Now, when I make an appointment, I write down everything I want to talk about and refer to my notes during the office visit. Many times the notes have reminded me of things I wanted to talk about that I forgot during the course of the visit. If I were wanting to try the antivirals (for example) I would also try to print out any studies (scientific) that were done on meniere's patients with the antivirals.
Rick

 

Re: Virus Connection?

Hi Everyone,

I would like to share a story that gave me a new insight. I have worked with physicians for many years and yes they drive me nuts sometimes but I try to remember this.

I moved to FL about 20 years ago. Werid state. Mosquitos the size of humming birds, awful huge things they call Palmetto bugs - but folks they are just giving a new name to a 4 inch long ROACH that FLIES. Another fun little creature is the fireant.

Yep you guessed it, sitting on a bench on a sidewalk one found me and took a bite. Everything got excitng then. I anaphlaxed ... stopped breathing and swelled up like a balloon all over. Since i was about 100 yards from an Emergency Room, they finally got everything settled so I was not dying. BUT the next day, every vein on my body came to the surface and felt like a plastic McDonald's straw. And worst of all, my hands FROZE very painfully into a claw position. They could not be moved at all without making me faint.

So - off to my primary Dr who I thought of as too arrogant for me but I had had no time to find a permanent doctor yet. He did blood tests, sent me to specialist after specialist. Tried steroids. Tried antiobiotics even though the tests did not show infections but out of desperation. He scoured the journals for articles. No one could come up with any solution that worked.

One day, when I saw him for yet another repeat visit .... he looked at me and said. "I am so sorry, but I just do not know what to do now." I was flabbergasted. "What?!!! You mean I am going to be like this for the rest of my life?" He put his hands on my shoulders and said something i will never forget. "Listen, this is killing me too. I got into this business to HELP people. I am human and I have never felt like such a failure before. I feel like medicine is letting both of us down."

He was so obviously sincere and hurting it snapped me right out of my little self centered world. I pushed my panic to the back of my mind and I just said, "Well okay then, we are in this together. Let's get the Medical registry out and just go through and try every specialist we have not tried yet."

My story has a happy ending. We finally, after months, landed on a Rheumatologist who picked the right med for me and after 24 hours of treatment I was on my way to normal again. Years later the immunologists of the world understand what happened and how to treat it. It has to do with big nasty Immune Complexes that get all excited, make lots of babies, run around like crazy guys, don't know what to do so they stop and take a siesta in the joints.

I try to remember that doctors really are just people. While I want them to see me as a person too, I try to remember that thier life would be hell if they emotionally bonded to everyone. I try to remember that they have a hard, demanding and often thankless job.

I try.

XX
OO

 

Re: Virus Connection?

^^

EXACTLY!!! Doctors are here to do more than just pop people the pills they believe they should be taking based on what they read on internet stories and see on tv commercials.

 

Re: Virus Connection?

Then again though. When Doctors aren't trying ANYTHING then what does that make them?? I would think it would make them people not doing their jobs. I have done the research, my doctor knows I do the research. So then, why not at least allow me to TRY what works for others with the same affliction?? I feel thats careless. I can understand the doctor wanting something to back up my request, but once I give that something, once I have done all the leg work. Isn't it the doctors job to work WITH a patient for treatment instead of against the patient?

I know doctors are human. I Love my doctor. I think i'm more so just frustrated that nothing is getting done than anything. I have put in another call to my dr. advising the next route i'd like to explore. I can only hope at this point, he sees that I have put in the time to research. Either put in some research time as well or just get me started on a road I can follow instead of standing at a crossroads with nothing to do.

 

Re: Virus Connection?

Well, I take L-Lysine every day! It treats viruses and I have chronic active Epstein Barr virus.
The lysine helps a lot and I wouldn't quit taking it even if the doctor told me too. If the MM is viral linked, then the Lysine should help it...rather than make it worse...just my opinion! Blessings, twinkle

 

Re: Virus Connection?

I suspected a relation to the herpes (cold sore) virus a few years ago when I was having intermittent pain in my ear. I was sent to a neurologist and I asked him at that time if there could be a connection. Of course, he nixed that and instead gave me another wastebasket diagnosis of "trigeminal neuralgia".
I recently contacted my doctor and through much pleading he put me on acyclovir. The pain stopped in both ears and the tinnitus in my bad ear is greatly diminshed. There is a book called "Viral Neuropathies of the Temporal Bone" by Dr. R.R. Gacek. He has taught at Harvard and practiced at the Mass. ear clinic.

 

Re: Virus Connection?

I agree with some of this but let's be serious here... are we not all just looking for some or any reason for this Meniere's....don't chop off my head yet...we all desperately want a reason and cure and it is great to give our opinions and thoughts but it is really up to the medical profession to listen to all of us and take it from there and do their research and help us fight this disease....if it is really a disease...some differ with that opinion.
I hate living like this and want it to just disappear but it isn't. I have had chicken pox, cold sores, bells palsy, shingles (2 times) fibromyalgia, sleep apnea,diveticulosis,spaspic colon and you name it. I seem to catch every thing that is going around and I have allergies...what they are who knows.
My children seem to have inherited some of my flaws because they too have some of these things. I just know that since I have developed Meniere's I have not been the same person. Even with the fibro I was able to live a normal life and keep things in kind of a control but with Meniere's there is no control, you can diet, and take meds and the vertigo and dizziness and loss of hearing and tinnitus still come. Some are helped by surgery and injections but still have Meniere's. We go into remission just to come back out of it again and again.
I pray with all the research that someone does find a reason and a cure for Meniere's and maybe it will be as simple as pinning it down to a virus and all we have to do is just take a pill....wouldn't that be wonderful.
If acyclovir is helping with some of the cases why isn't it made protocol for Meniere patients? My doctor has never mention it but, like alot of you I usually have to bring it up and why is that?
Why haven't doctors made a list of what patients have said that help and made it part of a treatment plan. My doctors have not mention half the stuff that I read on here.... why do they not know this stuff if we do and we are having it done and it is working for some of us.
I have good doctors some of the best and when I first had the symptoms they were baffled and ran every test and found nothing but that I was looseing my hearing and having vertigo and off balance and dizzy and that is where I am today... maybe the propect of surgery and my ENT has said he has done all he can...well, that is it for me I guess so, maybe next doctor visit I will mention one of the viral meds and see what looks I get.
I guess by now you know I am having a really bad day and I just want to slip into a coma or something and wake up and this is all gone.
Sorry if I offened anyone but I am so tired of all of this.