Hi Subs - hope you're listening - need your "take" on a new "experience" I had today. My dx has recently changed "again" from BPPV to MAV and I'm waiting to start treatment with nortriptyline (as well as looking out for other "triggers"). My Q?, though, is not about the different dx, but rather about a different experience that I'm hoping you can take a shot at explaining. I experience 24/7 disequilibrium - have since the very beginning two years ago - and I have "episodes" of "swirling vertigo" which have been less frequent, but longer-lasting (hours/days instead of minutes) and more intense in that they leave me utterly whacked out and drained - more so than before. I'll get to the point now - today I was walking with a friend - turned to look to my left while turning to my right - and when I turned my head forward again I had the sensation of being pitched forward - actually felt like I was being "thrown" forward (if that makes any sense!). My friend grabbed me before I hit the ground (thank God for strong prairie farmgirls :)),
but when I told her that I felt like I was being thrown forward, she said that she actually caught me falling backward - I would've landed on my bottom - whereas I could've sworn I would've landed on my face! It's the first time this has ever happened so quickly - usually I feel things starting to move and have time to sit or lie down - but this time I was just hitting the ground - but in the wrong direction according to what my brain was telling me! Is it possible that I overcompensated for the "feeling" of being thrown forward and that's why I went over backwards? My friend said she felt me "jerk" backwards, and I hadn't even moved my feet to try to correct the backward motion - no time - a little shaky for awhile afterward - more unsteady - but no true vertigo at all with this episode - just the "illusion" of falling - or I can't really say it was an "illusion" - because I did fall - just in the "wrong" direction - that's the "illusion" part. Anyway, that was around noon today and other than my usual feeling of being off-balance, nothing since. So what gives? Just when I think I know what's happening - a new curve is thrown in just to keep me on my toes! Looking forward to hearing from you ... take care...
~Sheri

hello swirlygirl,
Us people with vestibular problems have all the fun, don't we? :o I've had very similar episodes to which you describe, I'm walking and then all of a sudden the world starts moving under me (forwards, backwards, sideways, etc.) I've never actually fallen, although sometimes I am pretty close. If you feel you're falling forward when you're actually not, I think the normal response would be for your brain to tell you to lean backwards to stop the fall, so it makes perfect sense you would wind up falling backwards to compensate for the false movement. Hopefully this won't happen to you again. How is your nausea doing? My nausea is almost gone, but it's been replaced with a 24/7 sense of dizziness/off-balance/spacey/not-quite-right feeling. I'm hoping it will leave sometime in the next month or 2 (I'm not asking for a whole lot, am I?) Best of luck to you and getting over this menace.

BTW Remember I'm the guy that has problems after turning my head to look to the side, in fact I can relate 100% to what happened to you. I think this reinforces your original diagnoses of BPPV (or a variant thereof), the same exact situation I'm in.

I belive that chuzzlewit's got a point there.

What I share with you, and for what I've seen with many others, is he fact that some of the sympthoms seem to "evolve", or change with time, most of them for the better, but some of them show themselves as something almost completely new, sometimes worse than before, and this makes me feel totally clueless, because when you manage to get used to some kind of dizziness, unsteadiness, and sensations, something else shows up.

It may be a side effect of the decompensation process, or it might be something completely new(hope that's not the case for anyone), and in that respect I share your doubts and desire for answers, because I´m expeciencing a similar situation, with "new and improved" sympthoms.

I've had an accute spinning vertigo attack about 15 months ago, and now, after months without almost any strange feeling, I felt ill again, but instead of the "spinning", I'm more into the "falling" category right now, with much more eye discomfort(opposite to motion disconfort, which was the "usual" trigger), unsteadiness, and stuff, not 24/7 but in recurrent episodes during the day. I even shake my head like crazy with all the VRT excercises I'm used to but, they don't seem related, they don't cause me the spinning, but a quick simple eye or slight motion could make me feel like "falling", or with increased eye discomfort, and unsteadiness.

So, it feels ike a completey different beast, but maybe this is "normal" I don't know, I'm kind of new to this :), and I really don't want to turn into an 4 year veteran or something like that. Hope you get well soon.

Hi Sheri

Sorry u had to experience that...not much fun with this junk---huh?


..... what u described(as startling as I'm sure it was)....is not an unusual event for someone who has BPPV....since once the "ear rocks" get into the canal(s)...all spacial accuracy derived by the brains equilibrium center---goes out the window---since one of it's primary "sensors" is getting "hosed" by the mass(ear rocks) moving in the canal(s)

....almost exact events occured during my trip...from the land of "VN, Lab, to BPPV"...and then to 100% compensation......all were triggered by head "positioning" i.e, movement to a position...not the final head position.....while no one ever had to catch me....there were times when I (luckily) was holding on to a solid and stationary object...when I triggered it through positioning my head, up, down, sideways, whatever...

......as for the "illusion" part...once the "sensor" input to the equilibrium center goes..."nutso"...just about everything "spacial" can be/is an illusion...i.e., vertigo..is an illusion..provided by the equilibrium center...ur not physically spining...around and around...etc...

.....with the illusions presented...courtesy of the equilibrium center...having varying degrees of "fidelity" vis-a-vis ur spacial reality...

....i.e., spinning vertigo = 100% sensor fidelity but 0% fidelity for spacial reality of the body, floating(gravity) = prob 50 % sensor 30% spacial, bouncy...etc...

.....eventually...through compensation(VRT)...sensor fidelity & spacial fidelity...for ur actual spacial orientation...match...well

...for the most part...they never truly match...but then thats why evolution provided ur equalibrum center...three independent and competing spacial sensor sources....and there will always be some illusion..just the way the brain works....evolved...

U say:

...."My dx has recently changed "again" from BPPV to MAV and I'm waiting to start treatment with nortriptyline (as well as looking out for other "triggers")."...

As u know...there are----five factors which apparently predispose to BPPV:
trauma to the head, other ear disease, advanced age, migraine, and bed rest

So----BPPV could be back...or never left...and it is possible to have migraines and BPPV at the same time.....(unfortunately)

---Some of recent research (Northwestern Univ, Prov/Dr Hain, web site--"sticky" above)...further confirms what was known/suspected, adds some results from/of "physiomathematical models" of BPPV--raising some interesting questions:

...."According to the canalolithiasis theory typical BPPV of the posterior canal is caused by otoconia that dislodge from the utricle and enter the semicircular canal where they move freely within the endolymph.

This theory explains all features of BPPV and has been corroborated by the finding of dense particulate matter, free floating in the endolymph of the posterior canal of patients with BPPV.

It is now known that BPPV develops in stages: first the otoconia detach from the utricular matrix, and then they enter into a semicircular canal when the head assumes a critical position.

Furthermore, it has been shown by means of physiomathematical models that the prerequisites for BPPV are:

----there should be approximately 62 otoconia within the semicircular canal and

----these particles have to agglomerate in order to exert a hydrodynamic effect when moving in the canal........."

So this junk can hang around...

....wonder how long it takes "62+" otoconia to vacate the building...???

Well Sheri...not sure that helps much...but...my 2cents...

....wonder if anyone really knows...what's going down here.....just glad its gone....

:cool:

Hi Sheri
I noticed that Subs is running with a BPPV explanation (which is always so informative to read) and have to admit that my first reaction to reading your post was that to have such a physical reaction to a head movement has to be BPPV.
I still don't understand why you haven't benefited from the MEP and why your symptoms are so strong, certainly not a typical case. But is Subs is correct, you could be dealing with more than one thing, in which case, treating the possible MAV may allow you to seperate some symptoms and get a better handle on what's going on. I know there was almost instant relief for me once I figured out what was going on and did the MEP...instant in that I haven't suffered from any actual vertigo.
Am feeling absolutely horrible right now, feel as though I am walking on foam. My head positioning is fine, but feel so spacially "off". Have just come off my long shift (86 hours in 6 days, the last 4 being night shifts which were crazy busy) so I am pretty sure I am feeling the effects of a no sleep hangover. Stayed home with a sick daughter today and am doing everything I can not to get what she has. I did absolutely nothing today which is unheard of for me, and I almost feel worse for it.
I wasn't supposed to talk about me on this...back to you.
The one symptom that you have that throws me off is how your vertigo lasts so long, and isn't a classic brief (10-30 second) vertigo. When you say it lasts for hours or days, do you mean the actuall spin or the effects of it afterward?
Keep on walking Girl, (bring your farm friend with you for security), wish I was a little closer and could be your escort!
Hope you get to the bottom of this soon
FC

BPPV is only one cause of positional vertigo.

Positional vertigo is a general term encompassing all vertigo induced by a postural change.

The epley or modified epley is only useful for BPPV - because only BPPV (and not other forms of positional vertigo) is caused by otoconia in the canals.

This sort of thing should be a sticky at the top of the forum as it is a common misconception that vertigo caused by postural change is BPPV.

The diagnosis of BPPV is really straight-forward, even to make yourself with someone elses assistance in documenting torsional nystagmus.

Hey Chuzzlewit (yep, I do remember you & our similar vertigo/nausea experiences - what a great thing to have in common, hey?)
Stargrave - yikes, I can't believe I'm a 2-year veteran and still learning (and unfortunately, experiencing) new things about this stuff every day. If we're still here as 4-year vets, I hope it's to help others, like Subs, and all ...
Subs - How long does it take for 62+ otoconia to vacate the building? A. At least 2 years in my case I guess!!! - What do you know about "Tumarkin's Otolithic Crises" - please tell...
Hey FC - you gotta get some sleep to get those sponges off your feet! Duration of vertigo - yep - started with seconds to minutes @ beginning and actually has lasted up to 48+ hours of straight spinning - was "praying" for unconsciousness, but to no avail... (apparently, not unusual with MAV, my oto-neuro says - who knew???)
Adamw - 2 weeks ago in dr's office - no nystagmus during Dix-Hallpike - tonight could illicit it with MEP on left side only, didn't continue to find out about fatigue, etc. - Subs, how did those 62 + otoconia get out and back in without me noticing???
I can't do anything else tonight - sorry all - a bit wonky - will be back after GP appt. tomorrow - my consult report arrived - yippee!!!
Just to clarify something about the "falling" thing yesterday - usually when I would set off an "episode" with head or eye movement, I would feel very, very vertiginous, with assoc. nausea, vomiting, all that good stuff - but would have a warning - head/ear fullness - the start of the "spinning sensation" - something. Yesterday was different in that I had absolutely no warning and did not feel the usual vertigo, etc. - just really wiped afterwards. The only other time I've fallen so suddenly was during "Sway" test on treadmill-type machine - with my eyes closed, standing on a big sponge (can you relate, FC), and not holding on to anything - I failed the test!
Thanks everyone... get some sleep ... talk tomorrow ....
~Sheri

Hi Sheri,

So sorry for your experience but wanted to throw this in as it brought up a few memories I have from the summer. I never had quite the same vertigo that most on this board have (mine was mostly brainfog, off feeling, bad nauseau where I was throwing up every morning for 8 weeks straight and then the other symptoms I still suffer from, headache, tinnitus, lot of pressure, blah, blah, blah).

Anyway, I always had good balance during all this and never any problem driving; however, I can count about three episode that I experienced when I was in my car sitting at a red light. I would feel like my foot slipped off the break and I was moving forward and felt as if my body was leaning towards the steeringwheel. After a few seconds, I would come out of it and found my foot pressing so hard against the break and my back and head pressed back against the seat.

So it seems the same as your experience so think it is just part of this junk as Subs said.

Hope you feel better soon. Just wondering if you tried klonepin? It seems as if a lot of neurotogist start with that. Subs and Scott both provided research from Dr. Hain that support small doseages of it. I did not start feeling half normal until I started on this. It is worth a try to get out of this rut if the migraine meds don't help. I'd take it again if it meant feeling at least how I do now as opposed to a year ago at this time.

Take care - Gloria

Sure Sheri, no matter if it's months or years(hope its months tough), we are all here to help each other, that's for shure...

I have one question, I even thought of posting anew thread for it, but here it is.

Are all of you, or most of you under medications?

In mi case I've taken 4 antivert pills total, during my worst crisis, from 15 months or so to date, but I've heard this is not the best for the long term brain's compensation process, so that's why I just stick to some general VRT, and lots of praying. I only carry a pill as the "last resource", just in case.

Actually my VRT is quite general, and adviced by an ENT, but until now, on February the 15th I'm going to the Oto-neuro, and I'm taking my first VNT test, hopefully to pintpont the exact problem...

In the menatime I was adviced not to take any antivert drugs, or similar at least one week prior to the test...

So mainly I want to know if it's common to be treated both with meds and VRT, or is it just in case, or what?.

Cheers to all

Hi Gloria,
Yes, I'm sure it is all part of the same old thing - just a new "kicker" to keep me on my toes... sounds like your experience was much the same except you were sitting - you felt like you were going forwards, so you compensated by going backwards - that's what I think happened to me too. That must have been scary to have it happen when you were driving. Do you drive now? That was one of the things that crossed my mind after this happened - if I'd been driving, I don't think I would have had time to pull over until it passed - and that scares me - I always felt I had enough warning before. How are you doing now? Are you still taking klonepin? It is one of the meds that I took last year when I was experiencing lots of anxiety and panic attacks that goes along with this for all of us, it seems, and yes, I think it did help in that it allowed me to realize or understand the physiological symptoms of anxiety/panic as opposed to the physiological symptoms of the vestibular stuff - they were so interconnected for me that I did not know what was causing what (and I admit I sometimes still have difficulty with this, especially when I wake during the night in a state of panic). Thanks for still checking in - I hope your good days are outnumbering the bad - take care...

Stargrave - I'll tell you my experience with meds / VRT, etc. if it's any comfort, but I think most of us have tried both, with different results for everybody. When this first started for me, I was put on SERC, which I did not find to be useful. The only thing that worked to lessen my symptoms, and allow me to eat (because appetite & weight loss was an issue for me too) was dimenhydrinate. However, even though it did suppress my vestibular symptoms, most people believe that this suppression actually inhibits the brain's ablility to compensate, or at least it takes a much longer time to do so. This may have been the case for me, so I stopped taking these when I was doing VRT. It's a good idea to stop taking anything that may suppress your vestibular system before you have your testing done, because the meds may mask the results (ie, they may not see the nystagmus that is one of the clinical symptoms and may be important in your diagnosis). I think most people try not to take any vestibular suppressants when doing VRT, but I have also read on here that some people have had success with VRT while on vestibular suppressants - don't know how that works - but they said it just took longer than usual - whatever 'usual' is! However, many people with a vestibular disorder also experience associated anxiety &/or panic &/or depression, so many do continue with meds for these 'associated disorders' while they are doing VRT - I'm not sure if there are studies which indicate whether this is good thing or not - it probably depends on the person. Stargrave, there are so many people here who have so much more knowledge about all this stuff than I do. I hope my experience has helped to answer your Q?, but posting a new thread might be a good idea so you can have a bigger 'pool' of knowledge to pull from... good luck...

Subs - I'm sorry if I sounded 'flippant' in my last post - I am just feeling this whole body fatigue / brain fog right now and so I am sometimes unable to respond with anything very 'deep' or useful. I just want you to know that I do 'really, really' value your insight, explanations and simply just taking the time to reply. You (& Scott & FC & Gloria & so many others) have answered so many questions for me and I appreciate it more that I can express. There's just so much - it's totally overwhelming at times - as I'm sure you know - and for me right now the brain fog (ie. cognitive difficulties) are difficult for me to take - so I respond by being flippant - and I hope that I don't come across as being ungrateful - because that's one thing I definitely am not... so thank you once again and know that I'm glad you're still 'hanging around to help others through this...

Firechick,
I do hope you are feeling better ... and please don't feel that you shouldn't talk about how you are feeling on a thread where I've asked a Q? - I want to know - I care... I think we would get along very well if we were to ever meet - we seem to share a lot in common - besides the "head monster"! I suspect that you - being used to being such an active person and a 'doer' - probably go all out when you are feeling 'good' (it's all relative of course), and then when fatigue and stress, etc. hits you, a 'surprise' decomp is the result. I read in one of your posts (I think responding to Scott) about how surprised you were by some of your 'thoughts' that you had discovered through CBT, and how you didn't even realize how much your thoughts impacted on how you cope with things, how stress affected you without you even being aware of it, and how you feel. I'm finding that CBT is helping me discover so many things about myself that I wasn't 'consciously' aware of - it has sure been an eye-opener for me. So please share whatever, whenever, for any reason - God knows I've done more than my share (no pun intended)!

I saw my GP on Friday and will start increasing my nortriptyline next week, so I'll keep in touch. The much-anticipated consult report that I was so anxiously waiting for said pretty much what I thought it would - that, based on my history, she presumes I had a viral labyrinthitis in 1999, followed by intermittent BPPV (based on nystagmus seen in March, 2004 when this last bout started), but she states that she has been unable to establish this diagnosis conclusively because I have not responded to the typical VRT manoeuvres. She said that because of my profound motion sensitivity, as well as family history of migraine, she would like to treat me on the 'assumption' that my symptom complex is migraine (ie. MAV). This all makes sense, I guess, but there is one thing in the report that sticks out to me as another Q? that I cannot answer, but is a fact nonetheless. She states that my gait is wide-based (ataxic), but she is not sure why (other than it 'evolving' as a coping mechanism for my balance, or lack thereof), because at this appointment, I was able to perform a tandem gait (a little wobbly, but I could do it), whereas when I was checked in Sept/Oct, 2004, I could not - it was described as being 'much impaired'. So I'm not sure how this works - I did not 'consciously' develp an ataxic gait - it 'evolved' as a coping mechanism, which she has noted - and I still do 'feel' disequilibrium pretty well 24/7 - but can perform a tandem gait now (that's the heel to toe walk they - ENT's oto-neurologists, etc. - all ask you to do)! I don't get this one - I don't understand how it works at all - do I now have to 'consciously' try to keep my feet closer together when I walk - is that part of the whole 'retraining' process too? We did touch on this subject during her examination and she did talk about it evolving, etc., but I had so many other Q? and this one did not make it to the top. I guess I'll just have to experiment - but it seems like such a contradiction to me. Another one of those 'little things' that don't fit the picture. Has anybody else experienced anything like this? Wow, didn't mean to be so long-winded - best to all - take care...
~Sheri

Hey Sheri

...."if I sounded 'flippant' in my last post"....

Never even crossed my mind...one of the things I found interesting in the 62+ research...was....I'd had always thought...may one or two, perhaps three at the most...but...62+.....to cause...the...vertigo....never would have guessed...that.....what a piece of work this is.....

...by the way...one of the side effects...from this junk...is "giddiness"...since it seems--- for some that it affect that part of the brain...that makes u laugh & act & say things..about events that are serious & not funny to others...as if they are funny/not serious.....etc...----it is one of the symptoms...they look for at the Univ of Penn--Balance Center exam(which was one of the things they found that I had).....what a strange injury...this is???

..."do I now have to 'consciously' try to keep my feet closer together when I walk - is that part of the whole 'retraining' process too?"...

Yep....

..."(other than it 'evolving' as a coping mechanism for my balance, or lack thereof)"...

exactly...right!

:cool:

P.s. She sounds like she has got her act together...knows what she is doing...not many like her around.....unfortunately

Hi Subs,
Well now at least I have a medical explanation for my "giddiness"! Actually, it is very true that I feel I say things at times during this whole episode that can be construed as "inappropriate" - as you said, I say things sometimes to others about events that are serious and not funny as if they are funny and not serious - I often find myself apologizing for this type of behaviour - I am aware that I'm doing it - and I am aware that it is not always appropriate - but I do/say it anyway. And that is so not me - or the "me" I used to be - because I have always been super-sensitive about other people's "feelings" and would never purposefully say anything inappropriate and/or possibly hurtful. Amazing.. a strange injury indeed!

And yes, Subs, I do have a good feeling about this particular otoneurologist - she is very thorough - does lots of research herself - and seems to be just intuitive about "things". It's actually a hoot to be around her because she's the epitome of the "mad scientist" - she processes everything verbally - and boy, you'd better be on your toes because she speaks as quickly as she thinks, and can change gears in a millisecond, so if you are hoping to answer her questions or make a comment on something she is saying, you have to listen intently and dive in when you get the chance. I can feel her energy when she feels she's on the right track - it's all very logical - and she becomes very excited about possibly "solving the mystery" - it's contagious! I have only seen her twice, but both times I came out of there thinking, "She's the ONE (she should have been in "The Matrix") - she KNOWS! It's also extremely exhausting, esp. when you're dealing with "brain fog", but I agree with you that she does seem to have her act together, so I do feel lucky / grateful in this case.

So now I will be adding "concentrating on the de-evolution of my ataxic gait" to my list of VRT... best to you... and more thanks...
~Sheri

Hi all - please help!!!
In all seriousness without an ounce of giddiness - I'm starting to feel desperate. I am doing my best to remain calm and read and re-read all of the explanations of why and how this all works - and I'm certain that sleep deprivation is a major contributing factor - and I know that symptoms 'evolve' as we go through all of this crap - but I'm having a bit of a meltdown - I think! I drove my sons to the ski hill today - dropped them off and went to park - and proceeded to walk up a short hill to the chalet - and before I knew what was happening, I was meeting the ground in a none-too-graceful manner. Once again (this is only the 2nd time for me - but it's so quick and so different) the ground came to meet me. I was adjusting the strap of a backpack, and I really don't know what position I moved my head (probably looking down and then up again, more than side to side), but once again I had that feeling of being almost "thrown" to the ground, and this time I definately fell forward because my backpack drove my face into the ground. No major damage, no vertigo, no nausea, just a "what in the hell just happened feeling" and a little shakey. I guess I should be relieved that I'm not having the same vertigo with these episodes - and as I'm writing this I realize that much of the anxiety associated with it is coming from my sleepless nights - so I'm feeling better just venting how upsetting this was. When I think about it though, it definately would have been much worse if it was associated with the usual swirling vertigo and everything that goes along with that. Anyway, a friend drove us home - I was not comfortable driving after this - and I've been trying to just do things so that I'm not dwelling on it - but the closer is gets to 'sleeptime', the more wound up I seem to be getting. I think I've got another circular thing going on here...
How are you doing Scott - if you're out there? - any improvement on the sleep front? I've done the warm bath - tried "going somewhere soothing" - but ended up here in a bit of a sweat before my head even hit the pillow! Sorry - I need to vent - and my poor family have been exposed to enough of it today... thanks for letting me whine...
~Sheri

Hi Sheri,

I hope you didn't hurt yourself?!? I really feel for you. First, I really think you need some sleep. I couldn't imagine not being able to sleep at night as that is my escape from this. I'm sure being overly tired doesn't help your situation. I really started sleeping really well after I started walking (about 2 months into this inner ear stuff). I started walking only a couple of blocks as I was exhausted by then and now I can do three miles a day. To make my long story short, the physical activity was wearing me out to the point that when I'd lay down at night (even though the tinnitus was so loud and annoying) I'd fall asleep quickly. Is there someone that you could go on walks with and hold there hand or arm so that you wouldn't fall again? Maybe doing something physical would exhaust you enough to sleep better. It is almost like a baby being overly tired and not falling asleep because they did not take a nap or a long enough nap during the day so therefore they are all wound up and can't fall asleep at night.

Secondly, when you take warm baths, it provokes dizziness from the heat. Try putting an ice pack on your head when you are relaxing in the warm water. The heat draws your bloodflow to your lower half and your head will feel better. It honestly works as I did that for many months when the pressure and headache were so severe. A nurse told me to do that.

Another important factor that plays big time into your sleeping patterns is being consistent with the times you are going to sleep and getting up. Sleep studies have pinpointed that this plays a big part in your body's response to sleep. I read about this when my son was an infant as I never had sleeping problems in my life and always fell asleep right away. After about 2 years of constantly waking up all night and going to sleep at different times (my son was a horrible sleeper and woke up several times in the night until he turned 3 years old) I found myself very exhausted but I couldn't fall asleep. It was because constantly waking up at night and going to sleep at different times goofed up my whole sleep pattern. After my son starting sleeping through the night, I finally broke that cycle and sleep really well.

Try and relax as the stress will only make it all feel worse. Try and set yourself a regular ritual to your sleep routine. For example, a specific bedtime, your warm bath (try the ice pack on your head), and perhaps a little soft music as you lay in bed.

I'll be thinking of you tonight - I hope you can get some much needed sleep. Take care of yourself and try and think of the good things like you are not getting the spinning vertigo.

Hugs - Gloria

Sheri

Can't add anything to what Gloria has posted....

.....what does ur Doc say about these....??? Has she provided any insight as to why they are happening and what might be causing them??

Got to be a mind/life altering experience....had one...during my time with this junk...and it was enough....that's for sure....thank goodness u have a great Doc....

:cool:

Hey Sheri
I am so sad to read what you are dealing with right now, it's bad enough to deal with such physical symptoms, but to be sleep deprived too makes for a vicsious circle.
Are those attacks the same thing as "drop vertigo"? Does anyone know what the actual mechanism is for them?
I remember the early days with babies being up and never feeling like I could catch up, but to be dealing with the other symptoms on top of that is just plain horrible. Now when working nights I sometimes have little or no sleep for a couple of days, but now that the kids are older I can come home and just crash!
One thing that has helped me in the past when I have trouble falling asleep is writing stuff down that's bothering me. Kind of like giving your worries to a piece of paper instead of letting them take over your thoughts.
When you worry about not sleeping, it only makes sleeping harder. I know when I have to go to work at night and I try to get an hour nap in, I worry so much about needing that sleep that I often can't sleep until about 15min before I have to wake up!
YOU WILL KICK THIS THING!

Now this next suggestion may sound completely stupid...but sometimes when lying with a racing heart rate (like at work when we get the alarm and our truck doesn't go, but you are woken out of a dead sleep and you can't quite calm down again) I lie on my back with one hand on my lower abdomen and the other on my chest. (Sort of like a Chakra system,) I think of taking the energy from my heart beat and letting it go through my hand, down my arm and across to my other arm and down my hand into my abdomen when my body absorbs and stores the energy for when I need it. I also work on my breathing, in for three counts out for five....
Night Night
FC

Gloria, Firechick and Subs,
Thanks so much - I'm sorry I sounded like such a basket case last night - it wasn't a good day. But last night went better - only woke a couple of times - I will write more and take your suggestions - thanks so much...
Subs, I have left a voice message and an e-mail message with the otoneuro, but she has not gotten back to me yet. My regular GP is on holidays, so it may take awhile...thanks so much again all...
~Sheri

Hello Sheri,

Been reading this thread and really sorry you are experiencing this. Obviously I don't know for sure, but as Firechick says this does sound like what's sometimes termed a 'drop attack' (although some people use that to describe falling accompanied by swirling vertigo.) The more specific term for falling suddenly with no warning is the strangely named - 'otolithic crisis of tumarkin.' I've only seen this referred to in relation to menieres disease and endolymphatic hydrops (have no idea if it can happen with MAV, which I think is your current diagnosis?) It's described as a sudden, spontaneous fall to the ground without prior warning and no accompanying vertigo, nausea or vomiting etc.... Sometimes people feel pushed to the ground and sometimes there's no sensation other than having fallen. It's thought to be caused by an undefined, sudden change of the otolithic organs, the two organs in each ear responsible for sensing gravity.

Wasn't sure if I should say this as it may not be what you want to hear due to its association with menieres. Then again I simply don't know enough about this syndrome to know if this type of sudden drop can happen with different vestibular disorders. I also, obviously, don't know if this is the same as what's happening to you. Definitely one to bring up with the otoneuro.

Again, sorry you are experiencing this, hope you had a better night,

best,

Drop attacks and vertigo secondary to a non-meniere otologic cause.

Ishiyama G, Ishiyama A, Baloh RW.

Department of Neurology, University of California, Los Angeles, UCLA School of Medicine, Los Angeles, CA 90095, USA.

BACKGROUND: Tumarkin falls are sudden drop-attack falls that occur in a subset of patients with Meniere syndrome (endolymphatic hydrops), an inner ear disorder characterized by vertigo spells and hearing loss. OBJECTIVE: To describe the clinical features and quantitative audiovestibular testing results in a case series of patients with Tumarkin falls, episodic vertigo, and normal hearing. SETTING: University referral center for disorders of balance and hearing. METHODS: Case series (unselected) of all patients with Tumarkin falls and a normal audiogram at least 1 year after onset of vestibular symptoms (n = 6) from a retrospective analysis of the records of all patients with Tumarkin falls presenting to Neurotology Clinic at UCLA Medical Center, Los Angeles, Calif, from October 1, 1975, to February 1, 2001 (N = 55). Quantitative audiologic and vestibular function testing, neurologic history, and examination were performed. RESULTS: Five of 6 patients had unilateral caloric paresis, and 1 had bilateral vestibulopathy. Five of 6 had a personal and/or family history of migraine headaches meeting International Headache Society criteria. All patients had a subjective sensation of feeling pushed by an external force, and half of the patients had a subjective tilt of the environment concurrent with the fall. CONCLUSIONS: The incidence of migraine is high in this subgroup of patients with Tumarkin falls and normal hearing. The clinical description of the falls is similar to those associated with Meniere syndrome. Further studies are needed to understand the etiology of Tumarkin falls in these patients with normal hearing.

Hello,

Thanks for that Adam - excellent info. I'd had a quick look on the net but couldn't find anything re migraine and this.

Hope you're feeling better Sheri,

best,

How are you doing hbep? Are things getting better?

I have these drop attacks myself. Not often, they seem to come in clusters about once a year. I also have a friend with migrainous vertigo who reports the same thing - once a year or so it'll happen for a few days.. he'll get a few drop attacks.

Luckily, they have always happened for me sitting at my desk. Head usually hits the desk and I fall out of my chair - kinda embarassing

Hi Adam,

Don't want to hijack Sherri's thread, am about to write a post to you elsewhere - you'll know where I mean, lol, can't mention other sites on here.

best,

Hi Sheri,

FC's post triggered something. I bought a CD by Dr. Andrew Weil back when my headaches and pressure was so severe I could barely lift my head. It is a breathing exercise tape that does some exercises like FC mentioned using her hand to channel the energy from her heart to her abdomen for later use. (No she really isn't crazy as this stuff really works.) It just goes to show you how much our brains and the way we think controls us.

One particular exercise I like that is very calming is he has you lay down and take deep breaths in and out and think of the Universal pushing the air in you and then pulling it out. It is very calming.

If you do a search on Dr. Andrew Weil and then go to his shopping icon, you can take a look at the CD. It is $19.99 (not sure what that equivalates to CN as I'm not sure of the exchange rate right now). It is very helpful in calming the nerves and the yogi music used in the background is very calming.

Take care - Gloria

Hi all,
Thanks so much everybody for the thoughtful replies - I've just come home from a weekend of x-country ski races that my children are involved in and I had to check here before I go to bed. Gloria and FC - I do like the idea of "energy channelling", breathing and CBT to deal with the sleep stuff. I tried ativan for two nights with results that I didn't like where I was totally disoriented on the second night - so that's not happening again! Thanks for the warm bath/cold pack info Gloria - it does make sense as you are completely right that warm baths does provoke dizziness - I can feel that when I stand up to get out. I think that I just have to figure out what works for me - I know that 'obsessing' about it makes it worse - so I'm gonna try to 'chill out' a bit with this particular issue - it's been happening for awhile so I'm sure I'll be fine - I just kind of panicked when my sleep-deprived brain was accosted with these 'drop attacks' on top of everything. Thanks for the info on Tumarkin's, Adam, very informative and fits the picture really, I think. I did experience one more similar episode this past weekend, but it was while I was carrying some bags from my vehicle to the hotel room and the world tilted and I ended up on top of my luggage - fell to the right, which was 'unequally loaded' with luggage - so simple gravity may have played a part in this particular episode. The description of 'feeling like I'm being pushed' has definitely been present with all 3 episodes - no time to react - just like some 'energy-force' takes over and down I go. It's like something from Star Trek. Anyway, luckily so far nothing has been hurt except my pride, but I must say that I can understand how people who experience this often would become a little reluctant to go out and do much... I'm making a huge effort not to let that happen. My husband was great this weekend (after he saw me fall with the luggage) and insisted that I hold his hand for extra support while we were out and about. At least I was able to 'participate' in my sons' events without the fear of falling over - like you said Adam - kinda embarassing. Thanks to you and hbep for imparting your knowledge on this - hope it's a short-lived cluster - as you described it to be in your case Adam...
Subs - my otoneuro had been playing phone tag between my work and home # after I informed her about these new symptoms - she also (like Adam) said that it is possible that it is MAV-related, specifically through to MAV causing BPPV-like symptoms in my case. She has asked me to keep her informed via e-mail, so she has time to "mull over" and research, etc. She is still advising the nortriptyline route for a period to see if it makes any difference. I'm not noticing anything major yet - only been taking increased 15 mg (from 10 - 25) for ~ 5 days. I can't believe how approachable she has been - I feel very fortunate indeed.
Anyway, I'd like to know how you are all doing? How's your decomp, FC? Thanks for the info on the book Gloria - I'll check it out. I haven't had time to go through the rest of the more recent postings on the board - will hopefully catch up this week... but thanks all for helping me with my little meltdown... you're my 'safe place'... take care all...
~Sheri

Hi Sheri

..."my otoneuro had been playing phone tag"... "asked me to keep her informed via e-mail, so she has time to "mull over" and research, etc"....

Sounds like ur in good hands with her....what a great find...she is...not many Doc's show persistence---will persevere...and stick with it/you....with this junk...but those attributes....is what it takes....to win out

.....been said...that---

..."The measure of success is not merchandise but character.".....

She a "success"!! & because of that u will be successful also....two winners!!

:cool:

HI Sheri
Just wanted to say hi and how sorry I am to hear you are going through these attacks. I really hope that its just a cluster or a short term thing that doesn't happen again. I know what its like to be sleep deprived and would not be surprised if it is a combination of the tiredness and dizzy stuff that has caused some sort of overload. For about a year I would only sleep for a couple of hours a night, and felt so tired and out of it that I would not be surprised if I had dropped as I felt I would at times.

Anyway, been thinking about how you have been getting on. Im glad it seems you have a good dr who is motivated to understand whats going on with you, I hope she has some ideas to help you now.

All the best and take care
Tesss

Hi Subs & Tess,
I have to agree with you Subs that the "measure of success is not merchandise, but character" and it does feel good to know that she is not giving up just because what she first recommended did not work as we would have liked. I must say, I was quite amazed when she gave me her e-mail address - no other medical person has ever done that with me before - but as I said before, she "attacks" a challenge with vim and vigour and is determined to get to the bottom of it all. I think that half the battle we face with vestibular disorders is feeling 'validated' that we're not going nuts or making these things up or suffering from only 'anxiety' (not that I'm over-simplifying the effects of anxiety), because it is such a difficult concept for many to understand - I mean, we all look fine - unless we're falling over or puking - so how can simple 'dizziness' or a balance disorder affect so many other areas of our lives? It's astounding! I don't know if I've ever told you, but first when I started looking at these boards, I found an explanation you'd written which explained how vestibular disorders and cognitive abilities are co-related (if that's the right word), and I thanked you for explaining so clearly what I had been feeling for so long - and I printed it out to carry with me in my 'medical records' that accompany me to any medical visits - and I have used it more than once when I felt I wasn't doing a satisfactory job of explaining what I wanted to say. I too believe that I'm in good hands with my oto-neuro, but I've also been in good hands here...
Tess, so good to hear from you - hope you're doing well. I'm sure that sleep deprivation has had an effect on all of this - and I hope these 'drop attacks' come in clusters and then leave for good! Actually, other than the insecurity I feel because of it (because I do not feel any warning of it coming on), it's not as uncomfortable or long-lasting as the "attacks" of vertigo where everything was spinning - these symptoms do not accompany the "drop" attacks, so I guess I that's a positive! Anyway, I'm dealing much better than I was with the first one and I do feel that I am receiving good medical care, so things are looking up!
We all have so much in common here - and the "little gems" that people share about what worked for them or just simply saying, "I hear ya!" makes a world of difference when dealing with all of this. Did I read on another thread that you've just started a new job? Good for you - look at how far you've come - even having the confidence (physically and mentally) to go for it warrants a celebration! So cheers to you... and thanks for your understanding throughout ... it was you in the first place who encouraged me to jump in and tell my story so I could get the support I needed at the time... thanks so much... lots and lots of hugs and positive vibes...
~Sheri