I greatly apologize for the length of this post, but I'm at my wit's end. Please, please, please read on:

Over 11 years ago, I began suffering from what I initially called “dizzy spells.” The general traits I have are a slight dizziness that doesn’t really seem to throw me off-balance, but puts me more into a foggy-like feeling that affects my ability to process information. I guess you could more accurately call it lightheadedness. It’s as if I feel disconnected with what’s around me; almost like I’m watching a movie of my life, instead of actually living it. Very rarely has the dizziness actually “pushed” me into a wall, but I have had infrequent incidents of feeling like the ground has waved underneath my feet or literally falling into a wall when standing still without realizing that I was leaning. I’ve also on occasion experienced a rocking motion (very slight motion, but I’m definitely moving back and forth) on occasions when I’m sitting still (I’ve noticed it most often while reading when sitting on the floor). This disconnectedness is usually accompanied by a fatigue/sluggishness and the inability to perform any real analytical or creative work. Participating in conversations is terribly difficult when I’m in a “fog”.

These episodes generally last a few hours to all day long; there have been times during which I’ve experienced them over the course of several days without much respite. Even when I feel good, I don’t think I’ve ever truly felt the way I did before this all began (11 years ago!), as I am absolutely more sensitive to some motions than I was before this began. But, there is a definite “ebb and flow” to how I feel; for instance, the sensations are much less intense right now.

Some of the activities that have brought on the dizziness/fog include shifting focus from one object to another (especially while driving), walking through stores like Home Depot or Lowe’s, blowing my nose (especially when I’m very decongested), scrolling up/down on the PC (this will do it every time), keeping my head turned during conversations/watching TV, watching my kids spin around or swing on a swing set, or even focusing on objects far away (when I try to broaden my field of view, such as from a balcony, etc.). Although it sounds crazy, there are times when it’s as if I can actually “feel” motion in my eyes, as if I can actually feel my eyes focusing or adjusting to a new field of view. I am uncomfortable holding my head upside-down or in awkward, non-level positions. I also can be very sensitive to motion, including riding as a passenger, swinging, etc. I literally avoid bending over to pick up things on the floor; if I do so, I try to keep my head fairly level. On the other hand, there are days in which I seem to get out of bed with this feeling and can’t think of what I did to bring it on. All of these symptoms become much more prevalent when I’m heavily congested.

I’ve seen several doctors/specialists, including family physicians, ENTs, neurotologists, otologists, and psychiatrists. I was initially diagnosed with anxiety attacks and have been prescribed just about every SSRI on the market. For the most part, they didn’t help. After some intense research, my wife and I felt that I could have a vestibular disorder and made an appointment at an ear clinic here in Atlanta. I was incredibly relieved to be diagnosed with BPPV by an Atlanta-area otolaryngologist and receive therapy, but didn’t seem to get much in the way of results from it. After another period of simply “living with it,” I went to Emory’s Dizziness and Balance Center, was given a rotary chair test, and told conclusively that I did NOT have BPPV. I was sent back to the SSRIs and, again, have simply put up with the occasional episodes. I am honest enough to say that these episodes do seem more frequent during periods of stress, but they also come about at times when I’m relaxed. Every now and then, my patience will run out and I’ll again take up the task of getting to the bottom of it.

The questions I have are:
*Should I continue to pursue a vestibular condition?
*If so, what should my next step be?
*How could I be diagnosed with BPPV by one doctor and then told by another that I don’t have it? Is it likely that I “came down with it” several times over the years and simply visited the last doctor after it cleared up? If so, why do I keep getting it? And, why do some motions ALWAYS seem to bother me?
*Why didn’t physical therapy seem to help me?
*If I do have BPPV, are there any treatment options other than physical therapy that you would recommend?
*Any other advice you have.

Your advice is sincerely appreciated.

hey there, im really sorry i cant offer you any advice, but just wanted to let you know what you describe sounds EXACTLY like what im going through at the moment. ive had it for about 2months and its driving me crazy so i cant imagine how youve coped for so long! people keep telling me its stress but i find it hard to believe...
good luck with everything, ill let you know if i find some magic cure!
xxxx

Ugh, my sympathies, I can really relate to your discomfort. If you read my other threads you can scan my whole drawn out story. We all have one, and sometimes it helps to hear that you are not alone I guess. I don't have any huge answers for you either. I know how you feel as far as having general detached lightheadedness that isn't entirely debilitating, but just really unpleasant, especially day in and day out. Do you have upset stomach, sort of a feeling of motion sickness? I was diagnosed with Meniere's disease by my ENT two days ago, but I am not entirely confident in that diagnosis. I will be seeing a Neuro-Oto guy soon, and maybe he will have more thoughts on it. They did ECoG and ENG testing to determine this. I have weakness in my right ear, and scored abnormal on both tests, but no hearing loss. Have you had those tests done? Have they determined that it is indeed vestibular in nature?

I am sorry you are struggling, I hope you get some answers. The one unfortunate thing I am starting to realize is that even when and if they make a diagnosis, their treatments seem to be really limited. The medications make you feel lousy (just started diuretics yesterday, stomach upset, new dizziness, general malaise), the meclizine, valium, and even the scopalimine patch have unpleasant side effects, and don't seem to work on the lightheadedness anyway. They work on vertigo, but I have only had that once so far. I am relatively new in this mess compared to some of the people on this website, so maybe someone else will have some info based on experience that can help all of us. Keep us up to date on your situation. Julianne

..." I went to Emory’s Dizziness and Balance Center, was given a rotary chair test, and told conclusively that I did NOT have BPPV."......


Is this the test you had??

http://www.dizziness-and-balance.com/testing/engrot.html#Rotatory


If so---and----they said it was not "BPPV" what did they say it was???


http://www.healthboards.com/ubb/grad.gif

Yeah, that's the chair they strapped me in! Felt like something out of The Right Stuff.

After the neurologist cleared me of BPPV, he suggested I continue pursuing the psychological route. Of course, that's given me little to no relief. I recently called the first otolaryngologist who diagnosed me with BPPV and he told me that this was a common diagnosis from this specific physician, who tends to dismiss such conditions if the presentation is anything other than 100% classical. So, I'm going back for more PT. Very frustrating.

I assume from your first post that you have had the MRI, Blood workup, ENG(all 4 parts), etc....


....."disconnectedness is usually accompanied by a fatigue/sluggishness and the inability to perform any real analytical or creative work. Participating in conversations is terribly difficult when I’m in a “fog”."..............

If this is a vestibular problem(i.e., Central problem ruled out.)---then the light headiness/fog/disconnected feeling is usually caused by the "Brain's Balance Center"---that "Gizmo" inside your brain that takes the three input "signals" from the three systems that provide them(vision, vestibular & Proprioception)---being in "hyper drive" trying to sort out the "bum" vestibular system signals-----not at all unusual----one of the "hallmark symptoms" of many of the vestibular problems, i.e.,BPPV, Lab, VN, etc..... The brain is just using a inordinate amount of its processing power to try and figure out which way is "up", if you will----that subsides---as the brain compensates(learns/relearns) for the screwed up vestibular signal.


You can go here to read some on that:


COGNITIVE ASPECTS OF VESTIBULAR DISORDERS

VEDA Conference - Portland, Oregon

http://www.nemsn.org/Articles/cognitive.htm

Did the Doc that told you it was "BPPV" say what side was the bad side, i.e., right vestibular or left vestibular---he did not say both---RIGHT????


Got to think some more about the rest of your first post---kind of sounds like---the brain can not get the "vertical" locked in, i.e., can not tell when the head is spatially vertical in respect to gravity---you have recently been for an "eye" exam---right---and they specifically check your eyes for vertical alignment---????? You can go here to read about that(then---scroll down to---"Vertical Imbalances as Causes of Dizziness" on that page):


http://www.opt.pacificu.edu/ce/catalog/COPE7282/Dizzy.html


Better stop--now---and think---speculating to much---later.


However,---to answer one of your first questions--- yes I think you need to continue to pursue a vestibular path---while double checking---occasionally that it is not "Central"


---course---that can get expensive.


The key is to gain all the "knowledge" that you can absorb (not an easy one to do with cognitive impact of this---but can be done) in this area---and then apply it to a systematic approach to find and fixing(if possible) or mitigating the problem---it can be done---but it takes a lot of discipline, stick-two-iv-ness and luck!


http://www.healthboards.com/ubb/grad.gif


[This message has been edited by Subs30 (edited 10-03-2003).]

[This message has been edited by Subs30 (edited 10-03-2003).]

[This message has been edited by Subs30 (edited 10-03-2003).]

Although I dont have alot of knowledge on these things, your symptoms sound alot like mine, especially the trouble shopping in stores, turning your head to drive, and the scrolling on the computer...These are all things that would and still do sometimes set my "dizzies" , "foggy-head" symtoms off...I was diagnosised with BPPV and had treatments which have made me 98% recovered.