Vestibulitis/Mastoiditis/Veritgo

Man, you're still illin'? So sorry to hear that. Keep your head up; I know that's difficult. I know it's depressing, I know you're likely to chew an arm off of anyone who crosses you. Been there, hated that.

My advice (with no professional insight whatsoever) is to get to a University Hospital. Find a doc who will think about your issue. Sounds like your GP is dismissive of you, your neurologist wants status-quo and your ENT isn't interested. That's the tone I get from your post and I hope I'm wrong about that.

Whenever I've had my best medical help, it came from Yale / New Haven Hospital affiliated doctors. Up here in Hooterville, it seems I pay (or Blue Cross pays) $150 to be told HTFU.

When I went through my hand pain issue, I spent 18months, 4 docs and eventually was told "Well, I've run all the tests. I don't know what more you expect from me". That's a DIRECT quote from Warren Burrows, MD, hand surgeon, Cross Road Medical Plaza, Waterford CT. I got to Yale, 1st appointment the surgeon looks at the MRI I brought and she says it's completely inconclusive due to the POOR resolution ordered by the physician. She looks at my blood work (not Rheumatoid Arthritis) and realizes the diagnosis I've been carrying for 1 1/2years (OsteoArthritis) is likely completely bogus based on an interview. Schedules an exploratory surgery. 1 week later, I have a 5mm neuroma removed. 3 weeks later, I'm perfectly healed. Difference was: Her experience and listening skills.

Same paradigm with my Achilles. Local docs were extremely dismissive and poor communicators.

Look, you're paying for quality of service. Mediocre isn't good enough. Ask questions, challenge assumptions, make sure you understand WHY he wants to pull your meds. What would come from that? ASK!!!

I'm not trying to doctor-bash, but I've been through it too many times. When I get a more rounded doctor, I get better care.

Hope you can get through this soon. I've been there and fear any recurring bout. Whenever the whistle in my left ear starts up, I get nervous. Knock wood, I haven't had an "episode" in a number of years and have had only 3 lifetime.

Hoping this works out soon.

Dave

Wow, my computer calendar said it's March 1st. Happy March?

Thanks Dave, your pretty much right on target with my doctors attitudes. I saw my Neurologist on Thursday, and he was frustrated that my family doc wanted me off the meds. Both my family doc, and my neurologist are top shelf material, family doc has the highest ranking with United Health Care, my insurance provider, and my neurologist is head of a sleep institute as well. My neurologist has me on enough medicine to be pretty much "stoned" most of the time, which I don't particularly like how Valium makes me feel.

He has me on sedentary restrictions, supposed to lay down 50%, sit 25%, stand 25%. Obviously, with everything medicine wise, I can't drive, can't be independant, etc. I think that's the most frustrating part.

ENT did his job, rotor rooted out my sinuses, removed some scar tissue so my sinuses could drain and work properly, from that standpoint, that is all healed - it's just frustrating to have sinus surgery to clear up sinus issues, but get 3 more in 2 months.

Neurologist said Thursday that I probably have between 3-6 more months of this to go.

I hope you never get this again... Thanks for the response, your thoughts and the few minutes it took to type that up are much appreciated. I know there is a end of the tunnel somewhere ahead, I just can't see it though. I am making forward progress, so eventually I'll get there...

Sorry you are still feeling os poorly.

A non-medical suggestion...I saw a patient last night who was in her 80s with congestive heart failure, diabetes, etc.

When I examined her, her leg muscles had the BEST TONE i've ever seen in a woman even half her age. I asked her if she exercised, and she said her children had bought her a small "pedal bike". There are small pedal machines you cna buy that don't take up much space and youc oudl do it recumbant. At least it would keep your legs moving a bit, could be done sitting or layign and may help burn off a little energy and/or calories.

Tomorrow I get transitioned to the long term disability group - so they can start the paperwork for my long term disability - which starts on May 23.

A friend's wife is a RN, and I spent about an hour and a half with her discussing my health from about 11/06 to present. Here's some interesting points:

August - chicken pox
Week before Thanksgiving - shingles
vertigo saturday after thanksgiving

Anyone familliar with Ramsey Hunt Syndrome? Basically encephalitis from chicken pox virus? I seem to fit the 1/1000 person profile, having almost every symptom.

To do: Call my Neurologist and my Internist on Monday to see who can get a MRI of my brain scheduled first. All I have had at this point in CT scans.

She's not a doctor, but she's probably one of the best nurses I have ever met. She was going to go to Med school, but decided to have a family somewhere in the midst of it.

It's definetly worth checking into, though all websites say if caught early, I'll have a good change of getting my hearing back in my right ear. Since I am 4 months into this, I think I'm screwed in that area. Hopefully we can just get rid of the vertigo.



Edited by tjtryon 2008-03-16 3:21 PM

I'm not a doctor, but my grandfather had this issue several years ago. I think he called it Meneers (sp?) Disease. What worked for him, and is still working for him, was to see a chiropractor who gave him a very simple exercise to do first thing in the morning and before bed every day. I'm not sure of all the specifics, but it involves sitting on the edge of the bed and leaning your head from side to side to "loosen up the crystals in your ears". Sounds strange I know, but my grandfather swears by it and had been medication free for over 8 years. Worth a try!

Unfortunatly, that is not what I have. I have this week found out that I have Ramsey Hunt Syndrome, which is basically encephalitis on one side (my right side) of my brain caused by the chicken pox virus. I was treated for chicken pox in September, and, though I didn't know it, I had shingles Thanksgiving week, which I thought was just a painful dry skin rash. The untreated shingles caused this. The encephalitis is putting pressure on the 7th and 8th nerve, which are for hearing (I've lost about 75% in my right ear, likely permanent) and my balance/vestibular system, which may come back 100%, or may only come back partially.

I'm on a strong course of Valtrex for the next 14 days, and if that does not fix the issue, I have to spend time in the hospital getting something stronger. Main thing - docs and our pharmacy are not sure if valtrex passes the blood-brain barrier. If it does, Valtrex may be able to stop this, if it doesn't, we go the hospital route.

Well, I know it likely not what you wanted to learn. But, I'm happy you've found a cause and have hope that something can treat it. You've suffered long enough with this.

Just some simple things about Valtrex:
http://www.valtrex.com/shingles/speed_healing.html

It seems that it's most effective early in the outbreak. That's not you though :-(

Nothing in here about crossing BBB. Seems to be mostly in plasma
http://us.gsk.com/products/assets/us_valtrex.pdf

Damn, I hope this works out. Shingles is tough. I'm happy you've got a cause now though. Now go get healed!

Sorry to hear that. I wish you a speedy recovery!

I have found out the valtrex does not cross the bbb, but acyclovir does. Doc wants me to finish the valtrex first to see if that fixes the issue, but I'll probably on acyclovir when the valtrex is done.

Thanks a bunch for the concern, and the reserch.

I'm really sorry to hear that, although I am glad they finally figured out what is wrong.  Hope the first round of medication clears this up. 

Bump: TJ, Any updates? How're you doing?

Sorry, been off radar for quite a bit trying to work through this stuff, and I was kind of pissed when there were a couple of newbies blasting me in the pay it forward thread when a pair of shoes got misshipped and I sent Xmas cards with the batch of stuff I sent around Christmas.

As far as medically, they have found impacted frontal sinus cavities on both sides with no physical openings to the nasal cavity, with bone or cartiledge separating the two. Aside from infection, they have found chicken pox virus in both, likely from the infection from my brain (ramsey hunt) that followed my sinus nerve? Another sinus surgery on 6/19. Yeah. This has started to cause shingles pop up on both sides of my body, which my doctors are very concerned with. I have a new doctor who is a Ramsay Hunt specialist, and another new one who has taken me off any medication he has felt redundant (no narcotics whatsoever). Makes my life hurt worse, makes me want to throw up regularly because the vertigo, but that which does not kill me.....

I kind of got sick of the fact that I saw my doctors weekly for 6 months, and they just kept giving me pills, pills, pills. Maybe the new strategy from the 2 new docs will be helpful. What do they say, once you get above 3 or 4 prescriptions you have a huge change of interactions?

I'm currently looking for a tri recumbant to get back out, I have perm. damage to C8 & C7 nerves on the right side and C8 on the left. Vertigo, hearing loss and some facial ticks. Vertigo makes me want to puke, and imitrol makes it worse. Phenegrine is off the plate for now, so it's imitrol or zantac for now, antiviral, anticonvulsant, antivertigo and prednizone.

Thanks for the update. I was thinking about you a few weeks ago wondering if you were doing better. I guess you are; seems getting to the Ramsay Hunt specialist is where you need to be.

I can't imagine how difficult this is for you to deal with. I've been there, but only for about a week at a time. God bless you and your family while you deal with this. I hope you can have some normalcy in your family life and do the things you enjoy. Sounds like you're laying tracks by reading up on recumbents. I don't suppose you'll be driving a Saab, wearing tweed jackets and teaching at the local community college next, right?

Wishing you well...

Dave

Well, as far as the Saab, tweed, and community college, we'll see. As far as my family, God bless it, and I'm a hedonistic fool rethinking his life, the lovely wife was switched from Prozac to Zoloft about 2.5 weeks ago, flipped out 7 days out and is now living with her family with my kids. We'll see how that goes, but at this point, once again, life may have claimed another happy family. Let's hope not, I'm madly in love with her, she's got lots of misplaced anger, we'll see where it goes.

The good note of the day, as of today, I get to take an early 100% disbursement of my 401k since I am now on LTD. I also spent the morning getting abused up at the SS office - anyone want to give me the odds on getting denied the first time around and not getting an appeal for a couple of years?

Enough about me. Thanks for thinking about me Dave.

Storms here in Indiana tonight, tornados on the ground in SE Indiana, anyone local take care and be sure to check in afterwards.



Edited by tjtryon 2008-06-03 8:25 PM

OK, my turn. Last week, I thought I had a stubborn bit of water trappedin the left ear after an OWS. It'll happen sometimes for 1/2 a day or so. But, next day, it still wasn't cleared. Oh, oh...

Yesterday, it got worse, whistling, pressure, hearing loss. This morning it went to really bad, vertigo, nausea, positional difficulty (I couldn't get off the floor after cleaning up the dog's raided trash can episode).

F' me. My "A" race is Saturday, Save the Bay swim under the Newport, RI bridge. Been on the calendar since Januray and on my wish list for years. Season's "A" sprint triathlon on 8/7 and an OLY on 8/10. Paid the reg fee on all of these.

I've called the ENT and waiting for him to get out of surgery to look over the symptoms sheet. I know this takes at least a week to clear up if it's indeed swelling in the cochlea.

Damn it...

Wow, that sux. I've felt like I've been drunk on cheap Mezical since thanksgiving, though we've finally tracked the little bugger that caused this one down. My frontal sinuses (the ones behind your eye brows) were inpacted, and the infection was viral for the chicken pox/shingles virus. Two sinus surgeries later, I have lots of tubing up in my head until mid-August, and that leaves VERY painful headaches. I've been out of work/training/etc. since Thanksgiving, and don't even remember December or January.

Enough of an update for me, good luck for you. Hopefully yours clears up soon. Try some peroxide rinses in your ears, you'd be suprized how much gunk tends to bubble out.

What could be hurt w/ the peroxide idea? I'll certainly give it a go if I can tilt my head long enough w/o puking. WTH? I do that anyway

water in your external canal will not cause swelling in your cochlea (the inner ear). there are two barrier's (ear drum, round window) and a space (the middle ear) between the two.

but if you have significant wax in your ear sometimes pressure on the eardrum can cause some vertigo like symptoms.

If youre ENT doesn't respond, try the PCP.

TJ - sorry to hear that you've had it so rough, at least it's good to know what the cause was...I wouldn't count on any nerve damage being permanent unless more than a year has gone by.

A good lesson for chicken pox & shingles vaccines for those who have never had them, or had them very young. I had chicken pox at 6 months old (still have scars), and got a very mild case when I returned from Honduras one year...saw several kids with it there, and always do. So hopefully I'm good.

I had severe sinus infections the first 2 weeks of January, so I can sympathize on a very, very small scale with both of you.

My ENT squeezed me in on Thursday, PCP was "fully booked" until Monday. Good thing I got in. The mega-fistfulls of meds have helped. Prednisolone, Antivery, Valium and Diazide. Each does a small part to relieve symptoms, but none really well. I've had killer headaches though and have tried to ignore them. Sleeping 14hrs a day is about all I'm capable of.

You're right about the ear caanl idea. The ENT saw no evidence of infection in the sinususes or ear canal, hence, the problem likely lies in the cochlea.

I've lost 15% of my hearing in the left ear since my last episode in 2002; that kind of scares me. At that rate....

At least my nausea has calmed down. That and I've watched most all of the TDF for the past 5 days, but am still so bummed about missing the Save the Bay swim yesterday. There goes my A race. Hoping to be well enough to try and race on 8/7.

Sounds like Menieres disease to me. Sorry.

Could be menieres.  I have it, lost 25% of my hearing.  A great ENT, Dr. Glen Johnson at Dartmouth Hitchcock in Hanover, NH if you want to travel, he is great.  I was diagnosed 5 years ago.  I had horrible vertigo, fullness in the ear, ringing etc. I had an MRI to confirm no tumors, MRI normal.  Dr. Johnson put me on a very strict, low sodium diet and it has worked wonders for me.  I also take valium when I feel an attack coming on. I take a diuretic twice a day to keep the fluid from building up in my body. You also have to make sure you don't get dehydrated. So you still have to drink a lot of fluid while flushing out.  The way Dr. Johnson explained it to me, we have channels in our middle ear where the fluid flows in and out.  People with menieres do not have the channels and the fluid sits and builds up in the middle ear until it presses against the vestibular nerve which causes vertigo.   It's a horrible disease but can be controlled somewhat, low sodium diet is KEY (and I mean NO SALT, reading lables, and selecting low sodium foods.  So if you have 1. Hearing loss, 2. Normal MRI, and 3. Vertigo-  good chance you have menieres.  SORRY.  I have stretches where I will go for months without an attack.  This summer has been tough because of the weather changes/pressure up and down affect my ear.  Stress can play a big role too.  That's why I work out, and that's why I like focusing on something like a triathlon, keeps me from thinking about how awful this disease can be.  So far, I have only missed on day of training due to vertigo.  My first sprint is in 3 weeks.  I hope this helps you and I hope you find relief soon. 

I'm sure it indeed is meniere's. I had the full work-up in 1995 when I had my first episode (the waterboarding in the ears w/ different temps is lovely). 2002's episode wasn't as severe. This week has sucked, big time. Even using the computer is tough b/c I move my head from keyboard (I'm not a touch typist) to monitor causing dizzyness.

I know the extremely low salt and caffiene free diet. I have been neglecting it and I guess you reap what you sew. The direutic is staring to help after 4 days. Predinsolone= ??? No idea what it's doing; maybe some inflammation? Valium and antivert to control symptoms makes you into a walking (stumbling) zombie.

My ENT isn't the most talkative guy. I asked the question about dehydration: He didn't really respond to it and am starting to wonder. All 3 episodes have happened during summer and usually during heavy activity. I've been training hard and did an OLY brick last week in 90+deg weather. Felt OK during it and thought I did OK w/ hydration. But what about electrolytes? I use accelerade mixed kind of heavy, but is 1 bottle for 2 hours enough? I assume dehydration and electrolyte imbalance is cumulatiative.

Ideas?

Grasping for help here...

Sorry about the diagnosis. A quick mind dump on Menieres:
Presumed etiology is faulty sodium metabolism in the inner ear system. Water follows sodium in the body. So if sodium levels build up in the endolymph (innermost) ear fluid component, water follows. The compartment swells (pain, fullness in the ear, increased ringing), eventually rupturing the membrane between the inner and outer (perilymph) fluid compartments. These two fluids are toxic to each other and mixing results in the symptoms (acute hearing loss, vertigo). As the membranes are repaired, the vertigo settles and hearing may improve although not back to the initial state. Steroids may help reduce the inflammation of the acute episode and mitigate the symptoms. I tell my patients Menieres is a disease of "70s" and "50s".
70s means the 70percent of people get spontaneous remission at any stage of the treatment algorithm. Treatment starts with the acute phase as you describe, the for long term treatment 70% respond to menieres diet (no added salt). Of the failures, 70% respond to Dyazide or aldactone (jump start body sodium metabolism). Of the failures 70% respond to ablative procedures late in the disease course. Treatment is of course aimed at minimizing disability due to disequilibrium.
50s means the end game is a 50 dB hearing loss, and a 50% loss of word understanding when the disease reaches "burn out". Also, 50% of the time it will affect the second ear.
So you can see, fluid and electrolyte management is all about exacerbations of menieres. Unfortunately I'm not an exercise phys guy so I can't help you with your own optimization.
BTW, your ENT should have told you all the above, or at least directed to web based resources. If my doctor didn't talk much to me, I would be looking for another doctor. Just my opinion.

Hope that helps.

I totally agree with exnavydoc!  My first ENT was a LOSER!!  I searched out Dr. Johnson at Dartmouth Hitchcock Medical Center in Hanover NH.   He is the best and I would make the drive from CT if you can.  I am trainging for my first sprint and I know that dehydration plays a role in the vertigo attacks, so keep hydrated best you can.  Dr. Johnson will answer all of your questions.  If you can't make it to NH at least find an ENT who will spend time with you.  I have had good months and not so good.  The months that haven't been good have been filled with stress, and my going out to eat too much and not fixing my own meals.   And exnavydoc, we are lucky to have you on this board!