Appt at Johns Hopkins – here’s what I found out...

This was very informative Amethyst. You seem to have your research well in hand and laid out for you. I wish you could help me with mine. I am lost in the system with doctors unwilling to do anything at all with me. My neurtologist doesn't believe I have MM only MAV and yet my neurologist isn't clear what I have, yet no one is willing to treat except for medication which isn't working for me.

I feel I want to revisit all this in 09 but yet, I doubt I will get any new information from them. My neurotologist will yawn in my face (he always does that) and my neurologist is more concerned with my mental health stability than she is with my abnormal eeg's.

Wishing I had your ability to get things straightened out like you Amethyst. I know I am coming up for a review with SSD and I need to get my ducks in a row now. However, this is soo discouraging.

I am happy Amethyst that you have a plan for yourself and doctors that are willing to cooperate and treat you

Sparrow

 

Wow! what a great thread! I have really enjoyed everyones posts. Amethyst we will be very interested in knowing how the injections work for you. Thank you for providing so much valuable information. I live Ontario and I only have an ENT and am now thinking that i need to find someone with more knowledge surrounding MM.

 

Hey Genesis - glad you found the thread helpful.....and welcome to another Canadian! If you need any recommendations for a new doc in your area please let us know - there are a number of us scattered around Ontario so I'm sure we could come up with a few good suggestions.

Sparrow ~ I really feel for you. I know exactly what you are describing and I've been through it myself. You know me, you know my past, you know I've also struggled with serious mental health issues during my life. Back when I was really suffering with the mental health issues, I found none of my concerns on any other medical condition were ever taken seriously....the psychiatric issues always took precedence. Now, years later, I think I understand why. I hope I can describe it half decently - the way I visualize it is that mental health issues are a layer of possible conditions that sit on top of any other layers - ie. other health conditions. Of course depression, anxiety and such can be a direct result from a chronic health condition and that is different than what I'm talking about. When the mental health issues come first I think they have to be dealt with first....in order to peel back the layer and really see what the physical issues are.

My suggestion to you, if you don't mind me making one, is whenever you see a new doctor regarding your MAV or possible MM, do not mention any psychiatric issues if at all possible. Only answer what is asked of you. I've found there is little problem in mentioning depression and anxiety as a result of a physical condition but anything more than that and the docs put their blinders on. It's too easy to blame almost any symptom on psychosomatics.

Hang in there my friend........Amethyst

 

Amethyst, good luck going forward and please keep us updated. I'm so sorry to hear about your mom- it is so hard, isn't it?
Thinking of you, Lisa

 

Thank you Lisa.
And yes, it sure is hard.

 

Just bumping this for me : Been reeeeeeeeally busy (Yes, I feel gooder ;D ;D ) but I still have some searching to do and this thread seems perfect for me. Back soon (but not today)

Maggie

 

Gotta bump again :

I am researching the utricle and saccule on the web but it is a bit confusing atm so when my brain comes home I will write more : This area also seems (to me at least) to be my "problem" areas ???

Amethyst darlin :-* My dizziness can be like you described (elevator drops, vertical loops etc) but I have had the rotational type vertigo in the past but lots of the swaying boat, false motion thingys as well and these continue....my "mini" drop attacks are also as you described (I have also had the "push down" ones) but I feel like gravity has disappeared....does that make sense?

ooops.....Gotta go as Penny is here for tutoring

Maggie

 

Hey sis, read this:

http://www.dizziness-and-balance.com/disorders/menieres/menieres.html

 

Thank you darlin sis :-*

I have that saved already.....love Dr.Hain's stuff!!!! but I want more to go well "armed" with questions when I see the oto next month (hence the google searches).....he reckons my ENG and calorics are OK ??? ??? (btw I had NO dizziness at all during the water torture, in either ear ???) and his results contradict previous tests ie that my right ear is "dead"...of course I don't have any reports or copies as they were done so long ago : He is supposed to be the one of the best in Queensland ??? so I need to pick his brain...he reckons I don't have/never had MM, but only AIED...I am soooo confused now : A wrong Dx for 38 years ??? ??? ???

BUT....been really, really, really good the last few weeks...am still on the MTX and prednisone and have finally gotten over the side effects...have weaned off the valium to make sure that is not what is controlling the vertigo but have only been off it a couple of days so will let ya know

Love ya :-*

ps gotta get ready to go out for dinner with a friend...the pub has a new restaurant (a bit "up-market" for Goomeri...LOL) and I have been drooling ever since I saw the menu...LOL

 

Hi Maggie!

Hope you enjoyed the new restaurant last night.

Yes, you are making total sense with your description. I get the rotational vertigo as well but I don't mention it often because I've been fortunate enough to only have it mildly - the room spins but at a speed that I can usually manage. From what I've been told, the meniere's is not affecting my semi-circular canals all that badly.

Here I think would be the first main points to keep under consideration......

Semi-circular canals: responsible for rotational vertigo.

Utricle: responsible for horizontal linear motion - so that swaying feeling you get (boat rocking) is coming from this organ.

Saccule: responsible for vertical linear motion - the elevator dropping sensation. In addition, I've been told by two good neurotologists that the Saccule is the culprit with drop attacks - both the mini-drops you and I have described, as well as those nasty big ones where you feel pushed down.

It makes sense that you’re superior semi-circular canals may no longer be causing too much of a problem, but the saccule and utricle are. In terms of ENG’s, the doctor at Johns Hopkins stated that issues coming from the saccule and utricle rarely cause damage to the vestibular system – and therefore may not show up on an ENG. With myself, I currently have 46% weakness on the one side but I can’t find out whether that damage was due to the bit of activity I get in the semi-circular canals ...or if it’s due to the mess my saccule and utricle have become.

Oh, another point to keep in mind and maybe check into, is that I’ve been told that ENG results can improve over time. I only was able to touch on the topic momentarily but was told the compensation process can have a positive effect on ENG results.

In terms of what you might want to do next......I would bug your doctor for VEMP testing:

Source: http://www.dizziness-and-balance.com/testing/vemp.html

“The purpose of the VEMP test is to determine if the saccule, one portion of the otoliths, as well the inferior vestibular nerve and central connections, are intact and working normally.”

I hope this gives you a bit of a jumping off point. The VEMP testing should prove helpful in confirming the issues are coming from your saccule/utricle. As for how to resolve the problem if it is there......you got me!!!! I’m trying dex injection on April 15th so I’l let you know what I find out with that – I’m hoping it somehow brings down of the supposed swelling I have in the saccule (apparently the cause of my Tullio’s as well as drops and those false vertical motions).
What does your doc suggest as a next step if your problem is now in the saccule and utricle? Does he have any ideas of what would help?

Please feel free to ask any questions – I’ll help as much as I can, and Joe (Wobbles), I think could help a whole lot, he’s had similar issues and describes the process well.

Amethyst

P.S. I’m not very well educated on AIED vs Meniere’s but I would imagine both conditions can cause problems with the saccule/utricle. I suppose it could be true that you’ve been suffering from AIED for all the symptoms.......especially considering how well steroids work for you.

“Vino before poison!!!!!!!”

 

Maggie, you're bilateral aren't you? How does an ENG work in your case? From what I understand, the reaction of the left side is compared to that of the right side. If you have damage to both sides, can a accurate ENG be taken?

 

Maggie................SO glad it's been gooder!
Lisa

 

Amethyst darlin :-*

Such great info, thank you sooooooooooo much :-* Concise and just what I need to frame some questions and yes, that was my question to the oto re being bi and the accuracy of the results...unfortunately Queensland is about 20 years behind in equipment etc in the ENT deparment : and they haven't got rotary chair or VEMP available per the oto : Still a bit in the dark ages ;D ;D

My local doc said today that even though she can't explain it (and she also thought that no dizzies = no function) I should think of it as "positive" and take into account the brain's plasticity and compensation etc etc especially with all the VRT I have done... I do remember reading that the VNG does improve over time even with bilateral loss and maybe that is what has happened, so another "positive"

Don't really care : (well not much anyway ;D ) as long as I continue to feel as "gooder"

Yep...... "vino before poison" is still working ;D ;D ;D

Lisa darlin :-* I am so glad that you are doing "gooder" also

Now, I HAVE to do my homework from the foster carers course or I'll be getting into trouble :

Will be back to ask more questions soon :

Maggie

ps we sure have lots of questions going around...this had slipped to pg 4 but I'll keep bumping it up : and then I'm gonna ask Ray to put it in the database

 

oooops : Forgot to mention......dinner was DIVINE!!!!!!! World class in fact!!!

and am off the daily valium...just if needed now.....no trouble at all coming off it 8) and it so good to get rid of one med at least

 

Thank you everyone. What a wonderful thread. My goodness it took me 45 min to read it!! You guys should put it into the archives, wonderful info on all the parts of the inner ear and the 'real' explanation of that ENG. (I have wondered what all the electrodes were doing....at least they weren't shocking me!!)

Amethyst thank you, I always love your posts, very informative yet with personality. Very interesting about the headaches. I've started having them every so often and thought something about the MM because I could feel the pressure in my ear. But I kinda think they are tension headaches, who knows, they come in about the same time as the 'wows'. But they do go away. I just thought it was odd that they've started after MM.

Thank you guys...keep this thread going!
Aryn

 

Maggie ~ I'm so glad you found that summary helpful. And too bad about the lack of equipment in your area. I had been told that Australia was now using VEMP testing instead of ECoG's....guess that's true only in your larger cities. Guess you better keep up with that poison.....and of course, the vino!!!!

Aryn ~ you're very welcome! Thank you for your kind comments, I really appreciate it. As for your headaches, mine started around the same time as the mm onset and I would not have described them as 'migraines' other than the light sensitity - the pain just isn't severe enough to think of migraine but it sure is bothersome. My doctors have long wondered if the headaches were due to MM pressure (creating the headaches) or MAV. Since I responded so well to the MAV elimination diet I think that gives me the most accurate answer. When triggered, I get the headaches first and then, usually the next day, a whole lot of non-stop low-grade dizziness (unlike the wows or the big ones). It was this dizziness and the frequency of headaches that I've been able to help with the MAV treatments. The MM is still wreaking havoc whenever it feels like it....

If this sounds anything like you then you might want to look into MAV as well - afterall, the doc at Johns Hopkins strongly believes that in many cases MM and MAV go arm in arm.

Amethyst

 

I hate to admit this as I know what is involved in trying to work it out and how it is best treated (I have read yours, my darlin's Burdie and Thornie's accounts plus lots of others) and I don't really want to go there.....no more CHOCCIE would "kill" me and the elimination diet does NOT appeal AT ALL.....LOL.....but I am thinking also along the lines of MAV :'( as an added complication.

I don't think I have EVER had a migraine and rarely got headaches until last year, but put them down to pressure, TMJ and sinuses or muscle issues...rarely had to take anything for em (I do know that in MAV they can be silent) Always left sided, above and behind the left ear, and in the left temple area. Just lately though I have been having these very weird "flashes" of seeing things....OMG I thought I don't need visual hallucinations : (as with the majority I have tinnitus and that is really an auditory hallucination : ) but I do get a bit dizzy after them, not consistently and certainly not enough to worry about. The dizziness goes as fast as the "flashes" I will also get flashing coloured lights at times. Also, I am very, very ,very visually triggered with my vertigo and dizzies (and very motion intolerant ??? ) plus the oscillopsia on occasions

Does this sound familiar?

I have always put this down to the destruction of my vestibular system (know it can happen with that too) but now I'm wondering ???

I am organising to get my eyes tested just in case, but haven't noticed any change in my vision acuity ???

I could probably get VEMP and rotatory chair in Melbourne or Sydney but it's too far and too expensive and probably won't make any difference to the current treatment plan but it WOULD BE nice to just "know" ya know

Thanks again Amethyst darlin :-*

Gotta have a power nap, I am soooo tired (but still gooder ;D ) Have another tutorial tonight, the kids in the morning and then my last day of the foster carers course tomorrow and I don't want to push the bod too hard

Will be keeping the vino before poison treatment plan too ;D ;D Just got my most recent blood work and my liver is doing great

Maggie

 

Yes Maggie, it definitely does sound familiar. I can see why you're thinking MAV may be an additional component to consider.

Wow, I can't believe all that you're doing these days! I hope you get a good rest. And I'm so glad the vino is still working for ya!!!!

 

Maggie, You do know that you can have a phone consult with Dr. Hain that wouldn't be too expensive? It's better to have answers even if it's something you would really not have to deal with.
I say, get on with it, life is waiting and you have so much to offer.

Hugs,
Janine

 

Murphy is visiting :

Appears I have a virus :'( no, not a puter one, one that likes my nose, head and throat...bit ditsy but no dizzies...feel a bit crook,, not happy bout it at all :'(

Here's hoping the Vit D (3000 IU) I have been taking for over 3 months will minimise it and I have resorted to drugs ....LOL......only legal ones ;D (I am extremely restricted in what I can take so only panadol and lozenger's) and will start the nasal rinses I really hate em : but they sure are effective at rinsing out those nasty bugs and.....uuuummmm........junk (I was good....LOL) Even ex nurses forget that most people get squeamish with body secretions

I did have a thought though after my last post but can't string the right words together atm.........but I'll try...LOL....about all the VRT I did (and still do by pushing some boundaries : ) and how that could effect MAV/MM and why I got so much better but still can't see in the dark or turn /move sharply without overbalancing...I have more falls that way than with the drops...oh and the drops have decreased even more dramatically. I have only had 3 in the last 2 weeks instead of 3 a day.

NONE of my symptoms seem to be triggered by food, (and I have kept journals at various stages throughout) the environment, yes and tooooooooo much dust that is stirred up and my Jakey boy, but I keep him off my pillows and wash my hands after EVERY contact cause if I touch my eyes, they immediately react and I don't like it....LOL. Even with these things I don't notice increased MM/AIED symptoms consistently ???

OK, will stop now and don't worry about answering until after the Easter hols...how many days do you get off in Canada? Down here Good Friday, Easter Sunday and Easter Monday are public holidays. Nuthin is open at ALL on Good Friday. The kids get 10 days hols as well.

I have a tutorial tomorrow though....but she's like "family"

Janine....thanks for the suggestion. I would prefer to e-mail him and probably will but have to give these guys a go and due to distances, it's gonna be a long haul. Living in the bush has its disadvantages but wouldnt swap it :-*