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Inner Ear Disorders Board Index


Hello all,

I am a newbie here, but not to the devistating, life altering effects of my condition.

I have just been diagnosed with MAV (Migrane Associated Vertigo) which is what A LOT of us here are diagnosed with as it is the diagnosis for our symptoms when the doctors can't "find" anything "wrong".

Please respond to this post, all of our lifes actually depend on it.

What I would like to get is a baseline of all of our symptoms and then a number of how bad the symptom is.

I have listed myself as an example, please list at least what we all have in common and add what you may also have, a timeline of your diagonis or treatment can help to.

The bottom line is this, we are not going to get better unless we stay together and fully communicate any/and all possibilities and then explorer these possibilities in hopes to find "the Cure".

I will start with myself:

DIAGNOSIS SO FAR: MAV (Migraine Associated Vertigo)
HOW LONG WITH SYMPTOMS: 15 years
SYMPTOMS: (Note: list the symptom and then rate it on a scale of 1-10, then explain a little about it) also note if its 24/7 or not, so if it goes away sometimes completely it is not 24/7.

Dizzyness/Unsteadiness: (4-7) 24/7 Depends on day gets worse with stress on mind or body. I feel more Unsteady know then dizzy, although at first (15 years ago) I felt more dizzy. Also is the lowest when I am lying in bed after 2 hours in the darkness before I fall asleep

Ear Preasure: (9) 24/7 Always! Gets worse when I stress my sinuses, blow my nose, and when humidity (barometric pressure) is high, I also always have a runny nose? Ear drums ache, sometimes sharp pains.

Ears Popping (9) 24/7 yup, they crackle, pop, sometimes I feel "fluid"
sensations.

Hearing Loss: (2-4) this is weird, mostly I don't hear as good because of the tinnitus gets louder or the pressure builds and my hearing goes in and out with the pressure changes, all this happens when I stress my mind or body, or blow nose/cough, etc. I have no actual loss per the doctors.

Tinnitus: (2-6) 24/7 unnoticible unless in a silent room, but can be so lound I can't here as well as I should.

Head Pressure/Sinus Pressure: (9) 24/7 gets a little better with less stimulus but feels like i have a sinus infection, my head is full, cracking sounds, etc.

Brain Fog: (7-10) 24/7 This is horrible to say the least, I can't remember things, am completely disorganized even if I am organized, have trouble with simple words, simple math, forget almost anything that is said to me, have a better time remebring written items, it all gets worse when I am tired stress my body, or am in a noisy or visually buzy envronment, like a mall, etc. I AM CONSTANTLY ANGRY AT MYSELF WHEN I LET MYSELF DOWN AS I AM FAIRLY INTELLIGENT BUT WORK WAY BELOW MY ACTUAL ABILITY BECAUSE I CONSTANTLY AM IN A COMPLETE FOG.

Dreamlike/spacy feeling: (7-10) 24/7: I feel like I am in a dream, nothing is bright, nothing looks real, all my senses fell dull, sometimes I have to have someone say something 3 times before I understand what they are saying, I feel like the world is a little bouncy, and i feel like I am not moving wherever go its the world that is scrolling underneath me and I am in the same place. gets morse with stimulus.

Neck pain: (4-8) 24/7, mostly at the base of my skull and where the neck begins on my sholders, sharp pains sometimes, if I look up and trun my head clockwise and counter clock wise I fell and here a scraping sound/cracking, i believe in my neck or at the base of my skull, I am not sure.

Anxiety: (10) 24/7 would be an 11 if possible is better only in a dark room and is caused by my world always moving, head feeling like it will explode, you know, the fun stuff.

Shaking: (8) 24/7 hands, head, eyes, just about everything but my hands head and eyes are the worst, I can send any of them into a spasm if i relax them and "release" myself form them.

Weakness/Joints/muscle pain, Hands/Feet: (7-10) 24/7 Getting much worse as of lately, joints hurt, muscles jittery, throbbing, fell like my hands an feet are asleep.

Eye Pressure: (9) 24/7, constant behind eyes, dull pulsing pain, get sharp at times.

Vision:

Focusing problems (10) 24/7, my eyes jump arouns and its hard to focus on something near and then something far, eyes alway want to focus on the nearest object.

AURA (7-10) 24/7 I have VS (visual snow) Cell like worms throughout both eyes entire fields, things in peripheral appear to move in the opposite direction my eyes are moving so i get to the object sooner then I should. I get green stuff wneh I close my eys and on most thing when I open them, petterns move, words move, edges of objects move, and well, thats it for now. Gets worse when head pressure feeling increses.

Jittery (10) 24/7 never gets better, eyes are jittey, I can actually send them in an epeleptic like spasm is i relax them enough.

DIAGNOSIS TIMELINE:

In early 1993 I was done taking accutane (i was 19 years old) just had my wisdom teeth pullled and noticed some visual issues, not as bad as it got, but I got dizzy and foggy the more buzy the environment got, all of it was annoying but livable, and then:

In Mid 1993 i got REALLY drunk (and I wasn't much of a drinker) blackedout, bumped my head, woke up in a hospital and all the problems I had before where a thousand times worse.

For 2 years I lied in my bed saw 20 or so doctors, nothing helped everything was even worse then it is now, I simply couldn't see straight and was beyond brain fog, I felt like I was dead and dreaming completely.

During these two years I did vestibular exercises 24/7 even thought I didn't know thats what I was doing, I would force my eyes to stare at objects and focus while moving my head, I would ocus my eyes to see the four corners of a room whilce lying on the the floor and looking up ath the ceiling, i tried to keep my eyes from jumping, I forced my eyes to focus on objects looking from far to near. I also seff prescribed myself klonopin as it was the only thing that helpes but the doctot was convinced it would do nothing and that it was all in my head. All tests came back ok, MRI, nothing wrong with any organ, visual tests and inner ear tests came back inconclusive, they said there is nothing wrong with the organs but I did exibit visual tracking problems, and odd visual responses to my visual field tests.

Also the nystgmus test for the inner ear said there was no inner ear problem but that I had some sort of problem with my eyes when motion was applied to my vision, or to my body.

13 years went by, I gave up, I have been living in a nightmare trying to be as "Normal" as possible, I started to releran how to drive on a moped at first, and then a motorcycle (an automatic, there was no way I could drive a standard at the time or since) and then a car.

Missed college because I can't read for any long period without extreme discomfort, and it meeseup everything for at least a day.

So I have been working in retail for the past 15 years, because physical work (which I love) is too much, I am always weak and tired, and I have been in management roles, but as time goes by, I normally have to step down, or am asked to because my brain fog gets me into trouble (not bad trouble but enough to cause question)

I fell like my employers think I am lazy or don't care at times but I do, they just don't live in my world:)

I had my super cool daughter in 2001, I CANNOT give her the daddy she needs because I am actually handicapped because of this. I want to be there for her but I am always tired, or out of it. I am a good dad, but, needless to say, I wouldn't have changesd anything but when my fiance, her mom, said she was pregnant I told her I didn't want to have her because I felt I could not be a real DAD. I don't advise having children with this disorder unless your significant other is the bread winner and can pay the bills, or you end up at least 80% or better cured as you will end up being a so-so parent, and its not your fault.

PLEASE LIST YOUR SYMPTOMS AND STORIES SO WE CAN ALL FIND WHAT HAS WORKED, AND WHAT HASN'T. DON'T LEAVE OUT ANY DETAILS, PLEASE DON'T REPLY TO ANYONE IN THIS THREAD AS IT IS INTENDED TO GIVE EVERYONE A CHANCE TO TELL THERE STORY SO WE CAN ALL FIGURE OUT THE SIMILARATIES. REMEMBER TO LIST ANY DOCTORS OR PROCEDURES AND OR MEDICINES THAT HELPED AND THOSE THAT DIDN'T..

We are all in this together, I do believe if we all woke up with this one day, or something caused it that it can be cured but as you all know, doctors are not really taking this to seriously and no one other then us, understands.

I feel for all of you and thank you for trying to reach out to help us all...

krahon aka tyler
Ok, here it goes....I have a dx of MAV. It will be 3 years in Feb. The Dec before I was feeling very strange. I was dizzy and just felt sick. In Jan I would be walking and feel like I was falling side to side. This came and went. I just blew it off. In Feb I walked my daughter to the bus stop, turned to come home and it felt like the world dropped. I was very dizzy and sick. Went to the Dr. was told anxiety. I have had anxiety in the past. This was not. After 2 weeks in bed I went to a new Dr. He ordered an MRI and it was normal. Went to a neuro he sent me to KU to a otologist. He did some tests and called it MAV. (He is a very good dr). I didn't believe him, because I rarely have headaches. Over the last couple of years I have seen many drs and had many tests. I have bought into a couple of terrible dx's that have not amounted to anything. I now have a neuro that agrees with the MAV.

My symptoms are:

Balance issues: walking is difficult. I can't do things like take a walk around the block. I can only go short distances without hanging on to something like a wall, grocery cart ...

Brain Fog: All the time. I don't feel quite as smart as I once did.

Neck and Shoulder pain: My muscles are very tight and sore all the time.

Weakness and shaky: It is pretty much all the time. Its a little better in the am. If I am standing I need to be leaning on something.
,
Vision: Shaky, and like I am seeing gas fumes all the time. My eyes are tired and dry.

Muscles: They sometimes feel weak. I have spasms.

Tingling: I have tingling in hand and feet and sometimes my face.

Anxiety: If I am having a very bad day...this seems to take on a life of its own.

I have alot of other weird things. I don't know if they are related or not. I don't know if I would notice them if I weren't paying attention.

I am very blessed to be able to stay home. There is no way that I could work. Going to the grocery is a huge accomplishment for me. I have 5 kids and a husband that travels. The worst part of this is that I can't be the kind of mom and wife that I wish to be.

Let me add that one of the worst feelings I have is I can't tell if I am moving or it is something else moving. Am I bobing my head or am I not?
CK
Hi,

I have 4 kids...well, 5 if you count the husband!!!!;)
CK, I do have Valium in my purse "just in case" but I heard that they are a bear to wean off. I don't think I have used one in many months.
Krayon, I do think I have a mild TMJ, as my jaw has locked from time to time and/or popped when opening. I got a mouth protector from the dentist awhile back because I have been known to grind. But I am thinking that TMJ can cause migraine headaches...I don't get or rarely get a headache, but I will pursue this further when I go for my dental. The doc's don't really know how to reduce the immflamation that triggers these sx, but I think you have to break the migraine cycle first ( I had to as my sx were 24/7) in order to figure out your triggers, then you want to avoid the triggers. My triggers can be a bit challenging and to name just a few, Flourescent lighting (I do wear a visor now), mentrual (which can also cause immflamation in various parts of the body, for example the inside of my cheeks swell a bit, so I can see that then there would be inflammation in the vessels in my brain during this time.
I wonder if this is like the age old question of how does one get Cancer. In some it is hereditary, like migraine is, but for others you could say well, they were around envirnmental pollution or they ate too much meat etc....in some people , you may never be able to pinpoint the how's and why's. but you treat the cancer with things that have been "proven" to help...like migraine meds, they prescribe what has been known to help...but we may never know "why" one person gets cancer/migraine and the next doesn't.
As far as the natural approach, my migraine doc is very much in favor of trying things...for example he highly recommends Migravent...this dietary supplement has 133mg Riboflavin, 100 mg Magnesium and a blend of Butterbur Extract,CoQ10 and Biopurine. He recommends 5-HTP...so we did these first, but my sx were bad enough, that when I wasn't getting relief after a couple of months, we went the prescription route. I try to make time to relax and empty my mind 1-2 times perday to reduce stress, as stress is a huge trigger for all migraine sufferers. I remember being so excited when I learned I was anemic, because I thought, this is it, this is why I have a dizzy head....I got my levels back up with Iron supplements and the migraine issue didn't budge...at that same time I learned that I was Vit D deficient, again hopeful that this was it, this was my issue....got my levels back up, didn't budge the migraine. I did Harmone Saliva testing. I learned I was a couple harmones low. Most importantly progesterone....I went on oral drops of Progesterone, then had to switch to the pill form, and while I am thankful that we are getting all these areas back to normal, for me, they haven't put a dent in my "Healing" of the migraine.
So, here I am still a proponent of the natural route, I am darn thankful for prescriptions, so that I am able to have my life back...albeit, not quite the same.

Pam 3
I first got dizzy 16 years ago, following a bad attack of flu.Lasted two weeks, no diagnosis given and I pretty well forgot about all this until 2004.
I'm interested in your post because just before this all kicked off again, I was taking roaccutane. In 2004, lasted about 4-5 months.
2006, same dizziness, lasted about 1 month
2008 same again, lasted about 3 weeks.
Never got quite back to what I was before, have problems moving around in the dark, stairs, but otherwise able to work and live pretty normally.
Realised many of you have had wisdom teeth removed and jaw problems. I wear a guard at night, also have migraine.

I have virtually all the symptoms you list with the addition of severe earache each time.
Been diagnosed variously with Menieres, MS, labyrinthitis and vestibular neuritis...........
Howdy Everyone!

This is a great thread, and I really appreciate reading what all of you are going through.

My symptoms started June 6th (almost 5 months ago). I was getting ready to go on vacation, and started to get a spinning feeling in the evening. I thought I was just tired, and went to bed. Woke up with the room spinning so hard I couldn't move. Wound up in the ER.

From there I was on a steroid / meclazine / valium / and anti-nasuea drug I can't remember cocktail for a few days until I could get in to see my ENT. I also ended up with severe diplopia (double vision). It took me a couple of days until I could get up and walk unassisted to the kitchen or bathroom. I was in a cycle of taking meds, crashing out, waking up, eating enough so I could take my meds, then crashing out again.

I saw the ENT, and he told me I could either stay on the meds and not get any better, or drop all meds and "face this head on" and that after a couple of weeks of stumbling into things I might get better.

He also sent me to a Neurologist, who was very concerned about my diplopia. I had my first MRI, and it came back clear.

A month passed, and no relief in symptoms. Dizzy in the 7 range, 24 x 7. Brain fog in the same category. The neck pain also set in at this time.

I went back to the ENT and had the full work up. He sent me to a Vestibular Rehab Therapist who I worked with 3 days a week for 2 months. She put me back together so I could function. When I walked in, I couldn't stand in place with my eyes closed, I would fall immediately. I would never have passed a field sobriety test since I couldn't walk heel-to-toe for more than two steps. Anyway, after the 2 months I could stand for 30 seconds with my eyes closed and walk around pretty well. During this period, my Neurologist sent me to have my carotid arteries scoped to check the bloodflow to my brain, which came back fine, as well as an imaging EKG, which was also good.

Which brings us to the last two months. My symptoms have decreased to about a 4 out of 10 across the board. I am now able to put in a full day at work (I was out of work 100% for the first month, then started doing mornings at the office, home at lunch, crash out for the afternoon, then do some more work in the evenings). My diplopia has pretty much cleared up.

My biggest problem is I can't drive. Being the passenger in a car doesn't bother me, but when I get the wheel in my hands my brian seems to know I now need to control everything, and it starts to overload real fast. I've tried a couple of times in a parking lot, but even with no other cars or traffic lights to deal with I am drained after 10 minutes and have to go lie down. This sucks. I like my car and I like to drive.

I really miss my evenings as well. When I get home from work I'm toast. The dizzyness and brain fog have increased, and all I want to do is eat and vegetate. I can't fall asleep, though, so I just have several hours of being out of it every night.

I have been off of all meds except my hypertension prescription and daily aspirin (which was upped to 325mg by my Neurologist). I do keep Valium and meclazine for when I travel (I've had to fly three times since I got this) so I dope up just before getting on the plane, and arrive feeling ok at the other end.

The most honest appraisal of this entire condition was one I got from my Rehabilitation Therapist. I asked her if I might wake up some morning and this would all be gone.

She told me: "We get people in here all the time with a condition like a broken arm, where it has been in a cast and due to atrophy it is now at 50% of its original stregnth and mobility. Through weight training and stretching, we can get this back to 100% in most cases. You walked in with a 50% decrease in function of your vestibular system. If we can get this up to 75%, we will count that as a successful outcome."

I went home and cried. I couldn't fault her for being honest, she's worked with vestibular cases for 20 years. I just want a road map back to 100%, and I haven't had any of my docs give me one.

Anyway, over the past month I've gone back to the ENT, and had two steroid injections direct into my bad inner ear. No help, just really a scary procedure. I have also tried accupuncture with some positive results.

The bottom line I have learned from this is we can't get any kind of definitive diagnosis as to what triggers this (I didn't have a cold, flu, a flu shot, caffeine, or alcohol before mine started) and we can't get any definitive answer as to when it will end. I do know this has brought my family and I a lot closer, and I have a lot of friends that show their concern in many thoughtful ways. We all need to take this a day at a time and look for the good things, which are abundant.

Sorry for the long post, but it feels good to get this out there.

Good luck, and God bless you all,

Tex
For starters I am really glad that I found this site, and hope I didn't find it too late to join in discussion.


As for my symptoms, well, I, like others here, too accutane-i wonder if this is a connection? I did so in 1999 when I was 18. In 2003 I recall sitting in class and all of a sudden having a disconnecting fog come over my body, and since that day I have not been the same, in any regard.

I've been to many doctors and a neurologist and nothing 'official' has been declared. Not so much as a reasonable hypothesis.

I used to be a very talented individual and used words like an artist does paint on a canvas, but now I pause for many seconds at a time trying to think of the most simple words mid-sentence. I've even noticed my ability to type diminishing. I have to retype words and often interpose letters.

HOW LONG WITH SYMPTOMS: 6 years

Dizzyness/Unsteadiness: (3-4) I rarely get dizzy, only some times if i pop my ears which are stuffed constantly. I may get dizzy if I stare at something for too long.


Ear Preasure: (6-8) 24/7 My ears definitely always feel as if there is some pressure on them. There are times that are worse than others. If I think really hard I may feel the pressure behind my ears and eyes have more force.

Ears Popping (6-7) 24/7 i too somtimes feel the fluid in my ears. there are occasions where i try to pop my ears but can't and the pressure doesn't release.

Hearing Loss: (2-4) i can tell i have lost some hearing as well. I went to an ENT for a test one time and they confirmed that I do have hearing loss but based on one test they did it confirmed that the cause is not ear drum damage but some other source, potentially fluid trapped in the ear drum.

Tinnitus: (2-6) 24/7 noticeable in a quite room, but some times becomes very loud for a minute and then vanishes. mostly in the right ear.

Head Pressure/Sinus Pressure: (9) 24/7 This and the brain fog are the two worse. The pressure gets worse with the more complex thoughts I'm processing (mental math, long reading, etc..) I too hear the cracking sounds from time to time. Especially if i get hung up on something and i'm thinking really hard to recall it. This pressure occurs without pressure behind my eye and ear but sometimes those additional pressures will accompany it. Some times I feel as if the pressure is rhythmic and coinciding with my heart beat.


Brain Fog: (7-10) 24/7 I can't recall things as I once could. Some times its what word to use, or what a word means or i'll even forget words for simple objects like pencil. It is also more difficult for me to do even the simplest of math (a field in which i was always quite good) in my head. I forget names all the time. Some times I'll have to read a sentence two or three times just to understand what is being said. This can occur with even simple sentences. If I try really hard at reading or performing a mental task i may hear a slightly different popping noise or crack than when remembering. I can feel it too.


Dreamlike/spacy feeling: (7-10) 24/7: I feel detached from the world and it is almost as I am viewing everything from outside. I often feel as if i'm either high or drink when i have been partaking in neither. I never feel completely awake.

Neck pain: (4-5) 24/7, also at the base of my skull. when i feel the really heavy tension in this area and move quickly I hear a cracking sound that is similar to but slightly distinct from the other cracks and pops I hear.


Anxiety: (3) 24/7 Its getting worse and I find myself experiencing it even more so when i start focusing on the symptoms at hand. There was a point where I had abnormally low anxiety. My blood pressure is now up at 140/90 on average and I am an otherwise very fit indiviual with good diet and plenty of exercise.

Weakness/Joints/muscle pain, Hands/Feet: (1 - 3) 24/7 They always feel fatigued.

Eye Pressure: (9) 24/7, More prominent when I'm focusing mentally on something or when I become worked up due to the anxiety. Some times I can feel a pulsing behind it.

Visual AURA (7-10) 24/7 I also have the snow or worms that appear. i've always described the worms as little threads of light that are being weaved in my field of vision. At night time a 'halo' around lights. the brighter the light the worse the halo is. At first they suggested it was vision related so even though I have 20/20 I got glasses. The halo is still apparent with glasses on. Some times the auras are more reduced than normal, and this happens on the days I feel better.



As has been said, I have had the MRI with nothing found and am not sure what to do next. At times I wonder if it is an effect as a result from marijuana use (i was a heavy smoker at times in college) but those who were also users with me and have continued to use do not display the same set of issues.

Perhaps we could all work to find a common link between us? something in health or something that has happened? Perhaps even share figures of our blood work? I don't know, but the symptoms are too similar for us not to have the same thing. Especially given the visual effects and the brain popping, as these are very unique symptoms. I feel that the major symptoms are too common and thus we often get misdiagnosed. If we had a better understanding of what was taking place by comparing notes perhaps we could provide the proper information to a doctor and get resolution.

I hope others can continue to post here although its been months since the last post.
Greetings,

I wrote this on January 16th, 2007 for an ENT I was going to so that I would be prepared. I have changed it a bit where I thought it was necessary.

The first recollection of any problem in this regard would probably have been in mid to late 1993 at the age of 28. I was working at an apartment complex as a maintenance man. One of the duties was to take rolling dumpsters down to the trash compactor. While I was standing next to one of the dumpsters, I became aware of the dumpster moving past my left side quite rapidly. I also had the sensation that my head was dropping forward, as if to look at my feet. After what could have been only a split second, I realized that it was an illusion. Either I was going to pass out, or I experienced a case of true vertigo.

After this experience, I can recall no other until late 1997/early 1998. At this time, rather than a specific incident of dizziness/vertigo, I rather experienced what could be best described as a light-headed, spacey or detached feeling, similar to the kind of feeling you get when suffering a serious cold, or under the influence of medication of some sort. This feeling continued for some months and troubled me as my father had Multiple Sclerosis.

I checked out a book from the library entitled “Feeling Dizzy” by Brian W. Blakley and Mary-Ellen Siegel. After reading this book I realized that my symptom could be the result of many and varied factors. I eventually was diagnosed by my PCP as having Benign Positional Vertigo. Whether or not this is or was an accurate diagnosis I am not sure. From my reading (which, unfortunately has been extensive) I did/do not seem to fit the profile as my dizziness is never sudden or overwhelming.

After about a year, this episode stopped as unexpectedly as it began. I can recall one day simply realizing, “Hey, I feel normal again.”

Between late 1998/early 1999 until about 2001, I had experienced tinnitus. The tinnitus was sometimes a buzzing and occasionally a ringing, but usually it manifested itself in a bizarre fashion. I would notice that while talking on the phone, voices in my left ear sounded warped or distorted somewhat, something like a synthesized sound or like what one would hear on television when the person talking is having their identity concealed. This seemed particularly true when the voice was female.

I also noticed that the sound of the dial tone in my left ear was a full note lower than in my right. These episodes continued on and off for varying lengths, ranging anywhere from a few days or a week, to several months, stopping as suddenly as they started. Sometimes I would get the spacey feeling with the tinnitus, sometimes not. After early 2001 the symptoms stopped. During this period I went to have my hearing checked and was told by the doctor that my hearing was perfect.

In January 2005, I went through a period of daily nausea. I can't remember if I had a tetanus shot just before, or just after this. I believe it was a few weeks before. The nausea would come and go, and did not seem to be affected by eating or not eating. As I was due to turn 40 that year, I decided to go for a physical and to ask my doctor about the nausea. I was diagnosed with high blood pressure and my doctor thought that possibly the nausea was a symptom of an ulcer. Ultimately the ulcer diagnosis was discounted. The nausea stopped after a month.

Approximately one or two months into my hypertension treatment (via Lisinopril) I noticed the same light-headed, spacey, dizzy feeling that I had had years earlier. After numerous visits to my doctor, it was decided to discontinue the Lisinopril. The “dizzy” feeling continued, and remains to this day.

In late 2005 I went to an ENT. Again my hearing was tested and I was told that I had the hearing of a 21 year old. The ENT didn’t think I had anything wrong with my ears, ordered a sinus scan, and said one of my sinuses was a little plugged, but not serious enough to cause problems. He referred me to a Neurologist.

I then had an appointment with the Neurologist. She ordered an MRI to check for MS. The MRI was clear.

I am without diagnosis. This condition has dogged me for years. I take no joy in what I used to; reading; learning; creativity. I have been robbed of these pleasures. I feel as though I am not here; disconnected. At best I feel “okay” first thing in the morning. This soon ends after a half hour. My feelings of spaciness are 24/7. At its worst, I feel light-headed and dizzy as if I am going to pass out. At its best, I feel as though I am not present, as though I am viewing life through someone else’s eyes.

Other symptoms I have that may or may not be related to this condition are as follows:

Fatigue, feeling as though I am not refreshed after a night’s sleep; had a sleep study, not apnea.

Frequent PVC’s or other heart palpitations. These come on regardless of the circumstances. I may be at rest, or I may be at work. There doesn’t seem to be anything that is consistent, although I do sometimes notice them more intensely after I eat. I have had a stress echo test which came back as normal. PVC's and anxiety run in my family.

Feeling as though my mental acuity is lessened, ie. I am unable to focus or concentrate, as though my ability to “multi-task” is no longer there; my memory is nowhere as it used to be. Though I am fairly sharp, I feel as though my IQ has had about 50 points knocked off of it.

Also have had times of the cranial pressure mentioned in other posts here.

I have alot of "floaters", black ones in my field of vision. I'll have to check for the "gas fumes" thing mentioned earlier.

After all this time and thousands of dollars (I only had insurance for a brief time during all of this) there is no diagnosis.

One curious addition; I did have chicken pox as an adult at age 22. Whether or not this is significant, who knows. I did not take Accutane, but between 16 and 18 years of age I was on whatever antibiotic they prescribe for acne. The only reason I took it was that it took care of a follicle infection that kept coming back. When I was in my 30s, I found I could control this by keeping my head shaved. Glad it's an "in" look right now. :)

Regards, Brenden.
I don't know how you can tolerate this condition.You have my total empathy,and my fervant prayers.I have spent the past week,sitting in a recliner,for a few days,unable to go ten feet without getting dizzy and racing back to my chair before I went down.I have been depressed over this,and am bewildered to have this disability.It started last May,and was sporadic every three weeks or so.This most recent episode has improved the last couple of days.Tinnitis has been stronger this past week,and is only in one ear.
A couple of months ago,I had some exercises at our hospital for inner ear.They helped on and off(now done at home),byut I gave them up this week because of my dizziness!
I pray that I will be able to go out tomorrow(as a passenger)to get a hamburg,perhaps
I am a senior,and have had several years in as a clerk at our hospital.Recently I was a driver for a non profit until mt dizzy problem. Bill
Hi everyone new to the site. Have had bppv for 3 years now. Have been sleeping in a recliner for 3 years. First episode was waking one morning to the room spinning, double vision. Haven't slept lying down since that day. Had all of the tests mri, ct scan all clear. Sent to ent he said bppv and sent me on my way. I did have sinus surgery on right side.(the ent said he didn't think i needed the surgery, he didn't believe me when i told him all the infection from my sinus that constantly ran down my throat, that i can taste all the time. Guess what when he did the surgery found infection and cleaned it out. Wish he would have done the left side also.) this was post bppv. I've tried the exercises at home, but the vertigo is so bad i have to sit back up. I have had migraines since i was 12, but the bppv didn't start until age 36. I have also been to two neurologists and a $500.Oo per visit migraine expert dr. Kudrow in la. Nothing good came from seeing him. Every morning when i wake up i have wet oily stuff in both ears. I stick my pinky in and it comes out wet. Has anyone else had this? Also i noticied that someone else posted about the dizziness being worse before your period. This happens to me every month. My right ear is the bad side can deal better with the left, but have problems with both. Does anyone else have chronic sinus infections and have bppv? My neck also hurts on the right side and pops in and out. Can't go to chiro because i can't lay down. Have had mri of neck and it was clear. I also get pressure behind my eyes like someone posted. I squeeze my eyelid together from side to side and it seems like air pressure comes out. I know that sounds weird. I miss sleeping in a bed and not being able to get my hair colored because i can't lay back in their sinks to rinse my hair. Sorry to vent on everyone, it's hard when your friends and family don't understand what it's like to go through this. They don't get how dizzy i get. I don't get episodes of it like some people have posted, this is an everyday event in my life, there has not been one day in the past three years that i have not had a spell at sometime during the day. I live alone and don't even try to date anymore because who would understand if you were kissing them and turned your head the wrong way and had a horrilbe dizzy spell. Well thanks everyone for listening and if anyone has any answers to the questions i've asked, i'd love to hear from you.
Hi krahon,

I rarely post on here too much anymore, but I there was a time I was very familiar on the boards. I continue to lurk a lot though. I have an older user name (Wowwweee) also. If you do a search on my older and current user name, you will find that we (and many other posters) have a lot in common as it relates to what we deal with.

I read your post with interest and, because like you (and so many), I have been dealing with my “head symptoms” – some of which seem quite bizarre - for quite a long time. For me, it will be sixteen years this coming April. What an anniversary to remember and keep track of.

I have symptoms on some level almost every day, and more symptoms than what you have listed.

I'm not sure how much you know about MAV - so apologies if parts of my reply are redundant. Here are some of my thoughts.

You mentioned that MAV “…[I]is the diagnosis for our symptoms when the doctors can't ‘find’ anything ‘wrong’[/I].” I will disagree with you! :) MAV is a neurological condition that is NOT diagnosable using the same kinds of testing that are used to define other types of vertiginous/dizzy conditions. True, there are physicians who may tell a person that they have MAV without truly knowing if that is the causes of symptoms or not (there will always be doctors out there who do that), but it does exist.

MAV cannot be diagnosed by MRI, CAT scan, blood test and the like. MAV is a “ruling out” diagnosis. This means that first, causes of vertigo/dizziness are usually investigated via avenues that are known to cause the symptoms by visual and medical testing. Example: depending upon the symptoms, doctors look at things like ear/sinus infections or head trauma, and/or test for brain tumors, MS, anemia, cardiac problems, etc. The best test to determine whether it is MAV is (for men and women) trialing medications used to treat it and (for women) if their symptoms increase around their menstrual cycle.

Most people equate the word “migraine” with “headache”. But actually, “migraine” means “poor blood flow”. MAV is a condition where the blood vessels and arteries in the brain (usually in the base of the brain) constrict and go into spasm. This constriction/spasming restricts blood flow, resulting in symptoms that can increase or ebb and flow, depending on the where the constriction/spasm is, the severity of the event, and how long it lasts.

You don’t have to have headaches to deal with symptoms of MAV. That’s where the “Associated Vertigo” part comes in. And the vertigo can be anything from “the spins” to just a vague feeling of imbalance, to motion intolerance, to feeling like parts of you are moving when they aren’t. And THESE symptoms can be relentless, can come and go, increase, or be different – depending upon what is constricting/spasming, the severity of the event, and for how long.

And, there are all types of migraines (poor blood flow) conditions. A person cal have Abdominal Migraine. That certainly isn’t a headache in your stomach!

MAV is not curable. It is what it is. Medications can keep it in check – when your symptoms go away because you find the right medication to help you, this doesn’t mean that condition is cured. It just means you have found the right medication that works for your symptoms to prevent them from increasing and limiting your life. Symptoms don’t have to be constant OR infrequent for you to be affected and bothered by them.

I found the list of your symptoms interesting, because I deal with them all, also. Some days not all at once.

The fact that you feel less dizzy and more imbalanced after all these years, I would think, is the fact that you have compensated to a degree after dealing with symptoms for so long. I believe that most people will naturally compensate to a degree (depending upon what they really are dealing with), as well as emotionally compensate – meaning become more used to the feelings and sensations associated with vertigo/imbalance. For me, I feel that I have compensated as much as I am going to, without any further medical or pharmacological assistance.

I also deal with sore “inner ears”. However, that, in part, as well as my neck aches, I can attribute to the way I have become used to holding myself and my head to keep from “spinning” or feeling less off-balance. Over the years, although I may not notice the extreme tightness in my neck as much, between holding myself in certain ways (and this includes how I sleep), my neck and Trapezoid muscles have become extremely tight (think baseballs). The tightness carries up into my neck – causing those muscles deep around the ear to become super-tight. It is actually THIS tightness pain that I am feeling, NOT inner ear pain. The tightness can get so extreme that I feel sometimes I am dealing with inner ear-aches, but I am not.

The shaking that you reference is not the type that you feel in the pit of your stomach when you are scared – I don’ t think some people get that. I believe that most people who deal with vertigo/imbalance deal with this awkward symptom; I think it's the body's way of trying to stabilize when the equilibrium is off. Being "off" has a ripple effect - so it affects all motor functioning, including the way we move in simple ways. It doesn’t hurt, but it is annoying. I have this increase when my balance is really off – as a result, I feel like I am doing everything in small jerks rather than in fluid movements. It also causes me to walk like Frankenstein when my symptoms increase. This is like a side-effect of increased head symptoms for me.

It would have been great if someone would have told me early on that most people who develop imbalance issues also develop some level of an anxiety disorder. For me, I found that my “head symptoms” turned into two issues. The physical symptoms, and the anxiety problem. There have been times when I don’t know what has the stronger hold over me – my physical symptoms and the limitations from them, or the anxiety and the limitations from that.

Honestly, you start to have to deal with BOTH – it can be overwhelming. My advice on that is to get yourself some counseling to deal with the anxiety that is caused from dealing with your physical condition. Getting better control over your anxiety (and depression, which is also common when you become so limited dealing with something so chronic) makes a WORLD of difference. It’s easier to cope with what you have to physically, when you are feeling stronger and less afraid emotionally.

My tinnitus will increase if I have inner ear congestion (leading to “the spins”). My symptoms obviously increase whenever this happens. So, if my ears increase in ringing, so will my symptoms increase. When I get that bad, I will usually have my ears checked out by my doctor, to make sure that either I am dealing with inner ear congestion or I am not. For those people who are not sensitive to imbalance issues, inner ear congestion might not impact them as much. For me however, this can impact me greatly, obviously.

Your weakness and achy-ness might be the result of not being as active as you once were. I have that as well. I am certainly not as active as I used to be because I am too off-balance much of the time. However, you can do stretching, which may help with these two issues. Stretching over time can produce tone and it keeps your muscles moving and limber, even when you can’t do too much else. Try to stretch all muscle groups at least twice a day. Spend a good half-hour devoted to yourself in this manner. It’s important to keep your muscles moving, even when you can’t. Stretching is a good way to take care of this, and yourself.

Also, check your diet. Make sure you are eating healthy even though I know when you are dizzy, etc., it’s easier just to grab what’s around. A multi-vitamin also can help keep you healthy if your eating habits are poor due to whatever reason.

I have all the vision issues that you mention, and some you do not. The “cell like worms” that you mention are just a variation of eye floaters, and are harmless. You mention you get “green stuff” – do you mean green pus, or are you seeing colors? Seeing colors is related to migraine auras and is harmless but can be annoying if the colors are constant. Green pus is something you should speak with your doctor about.

And, not to minimize what you are dealing with, however, here are some other things that you may want to know:

Low blood pressure can add to “head symptoms”. Things that lower blood pressure are digestion, hot temperatures, and dark chocolate to name a few. It is recommended that you eat more meals with smaller portions, than eat three large meals per day; take luke-warm showers/baths rather than hot ones; and eat dark chocolate (if you do) in moderation.

Dehydration plays a large part in adding to feelings of weakness and dizziness. This doesn’t mean that you have to drink eight glasses of water per day, but a few good-sized glasses of something healthy, like water, Gatorade, or watered fruit juice is a healthy habit.

Drinking too fast makes you hold your breath. The more you hold your breath, the dizzier you might feel. Drink slow.

Anemia can add to feelings of dizziness and weakness. Most people think anemia just applies to women in terms of blood loss related to menstrual cycles, but men can have this also. It’s a simple blood test.

It’s also good to get tested for thyroid problems, and Hepatitis A.

Get a cardiologic (heart) check-up. Some sensations of vertigo are caused by underlying heart problems.

Get an thorough eye examination.

Stay away from alcohol, caffeine, MSG, refined sugars (those found in cakes and iced tea mixes).

Chronis Tension Headaches can produce the same types of symptoms that mimic MAV. For the longest time I was diagnosed with MAV. My new neurologist feels that I may be dealing with Chronic Tension Headaches coupled with some Dystonia in my neck. Dystonia is a ‘muscle tightening’ condition that can be quite severe in some people.

Don’t self-medicate. For me, I take 1 teaspoon of Children’s Liquid Cherry Flavored Benedryl mixed with 2 plan 500 mg aspirin. This isn’t recommended for many people, but works well for me to take the edge of the worst of my symptoms. Always ask your doctor before you try something that someone else recommends.

Also, I will put a small piece of cotton in each ear when my symptoms are really bad. This helps the inside of my head feel more “balanced”.

Sometimes, unfortunately, some things are what they are. There are many conditions that go undiagnosed, and/or your symptoms may be just part of your genetic make-up. Vertigo can be one of the easiest OR hardest things to diagnose, depending on what you are dealing with. At some point, a decision is made to treat the symptoms rather than find the root cause because honestly, for many people, a true cause cannot be found. And, as you are aware, vertigo is a symptom of something else. So, our symptoms mean that something is going on, and for many of us, that may mean continuing to wait until additional symptoms present themselves so THEY can also be investigated and added to our list until possibly something is found for the reason for them. For some people, this can mean a long wait until something else pops up that points us and our doctors in a new or better direction.

And yes, it’s awful. Just writing that does not convey how much my life has changed because of what I have to deal with on a daily basis. I could scream it in CAPS, and still someone else would not know how low I have been and continue to be at times. Some days I feel it is a slow, miserable death.

I hope you found something helpful in my reply. Wishing you the best.
Hi Everyone
I started looking at these posts about a month ago and then was just too sick to deal with them.
I would like to tell you my history and something I am interested in finding out about. I will try and keep this as brief as possible.
About 9 years ago I was driving to work I was very healthy then I just had what I thought was a stroke. I started vomiting my head was spinning and I could not hold my head up. I was taken to the doctor who diagnosed me as having a virus in the ears. I was unable to work, drive a car, function normally for months. I had seen several specialists and had tests done - CT, MRI, rotating chair and water in the ears. The diagnosis was I had lost 60% of the function of my inner ear due to the virus and they said I had Viral Labrythitis. They said my eyes and brain would eventually compensate for the loss in the ears.
Over the years my sypmtoms did become very few and far between and I could lead a fairly normal life.
Three years ago I started having severe attacks. I was once again very unbalanced, dizzy, looked like I was on drugs, could not think, drive a car or function properly.
I went to another two neurologists and the Eye and Ear Hospital here ( I am in Australia). I had more CT, MRI, balance and hearing tests. The first neurologist said I have BPV and referred me to second nurologist who said I had MAV. Meniers was ruled out even though I had tinitus but I had no hearing loss. He prescribed Verapamil (beta blocker) I started taking them but they made me feel so sick. After my GP insisted I continue with them I took them for about 10 days. My symptons were more severe and I was so unbalaced etc I was scared about what they were doing to me. The vertigo that I had on those tablets was worse than the normal vertigo that I get. I stopped taking them and it took me about another week before they were out of my system. I went back to the specialist and he said they should not have done that to me but they did. He said I could try different meds or go with out. I have had no medication for about 18 months now.
I suffer lots of symptons that I have read other people suffering from but not all of them, They come at different times and varying degrees of severity and length. I can be free of symptons for days or weeks. My attacks come on usually without warning, they can last 5 mins or 5 hours, I can have one attack a day or six. When I am suffering there is little I can do the only thing that relieves it is to lie down. When I am free of these or in between them I am fully functioning and 100% fit.
A few months ago I was doing some research on the net and found a few references to vertigo being caused by antibiotics (Gentamiacin Toxicity). I have not been able to find out a lot and hope someone out there may be able to help me so I can go back and see neurologist again. Basically what I have found out if you have a pre existing ear damage (as I did with virus) you are not suposed to take antibiotics like gentamicin or any others with names ending in myacin or miacin (hope I have that right) as they can further damage your ears. If this happens Verapamil will also make the condition worse. This is the case with me. Several moths before it flared up again I was sick misdiagnosed with bronchitis but it turned out to be whooping cough. I had taken 9 lots of tablets over a two month period 8 of them were the ones that can cause this condition.
Any thoughts information on this would be greatly appreciated
ok im 24 and i have been dealing with these dizziness issues for almost a year now. its gotten worse over the past few months though. pretty much all the symptoms that woweeee had mentioned i have with the exception of the headaches. i dont get headaches that often. but i get really dizzy almost to the point of passing out if i stand up for too long which has limited me to 45-60 mins a day if im lucky of being able to stand up. and i also developed agoraphobia. but im not sure if it related to the symptoms or something else all together. but that also limits me because i havent been able to see a dr. for the dizziness. ive had stomaches problems for the past 6 years or so. and was never diagnosed with anything. again im not sure if that has anything to do with the dizziness. but my symptoms are as follows. and its kinda hard for me to describe them without using my own words so bare with me please.


my eyes are constantly dry and irritated.
im nauses pretty much all the time.
my head spins alot.
whenever im done doing what i have to do like house work or something like that. i feel very drained even if its something as simple as picking up a few things off the floor.
there are days where i do not get out of bed at all because i feel very dizzy.
i get weird tingly feelings in the back and sides of my head.
im very sensitive to heat. even when i have my ac on and its only 50 degrees outside.
i get panicy feelings all the time.
my heart races out of nowhere.
there are days when my whole body is shaky for no reason.



i know these symptoms are very varied but i hope they are all connected somehow and its something if not curable then treatable at least. i have 2 sons who i hardly ever see because im couped up in my room pretty much all the time. i think that if i could control or get rid of the dizziness and nausea then i can work on the agoraphobia alot more and be able to do more things outdoors. so please of anyone has information on what it could be i'd be ery greatful. im just sick and tired of being sick and tired..
hey im only 16 and i've had this since late november. mine doesn't sound nearly as bad as anyones here, i've basically just had a spacey feeling, kinda hard to focus in a way. my vision is fine except for the fact i have a hard time focusing my eyes on one thing. I am not really dizzy, i can ride my bike with no hands, i just am kinda out of it. just recently my ears kinda pop sometimes. hearing isn't bad, can barely tell a difference. i notice i had little blood vessels in my eyes showing, around the edge of it.

I had a sinus infection for a month and a half then i got some anti biotics and nasal spray and it went away. So i havn't been congested since then. So i am not sure if this could be allergies because i havn't had any allergy problems before, just lac tose and tolerant, or however you spell it. This just kinda happened one day after a party.

If anyone knows what this could be, what could've started it, or how i could possibly get rid of this, that would be great. This is pretty annoying, i still get same grades in school as always i just find it kinda foggy headed almost, and makes me lethargic which is annoying because i used to be one varied sports teams and loved to go travelling.

It's definatly changed my personality in a negative aspect. I would do anything to get back to normal.
[FONT="Arial Black"][/FONT]

hello, I am 22 yr old girl who wants her life back!

its been a yr now and things havnt changed.
symptoms
1: fullness in my ears/cogged/popping sound/clear fluid in my ear when i wake up. ringing noise.
2: sinus pressure whole t zone of my face.
3: floaters in my vishion when i look at white or the sky most noticable.
objects with patterns seem to move. focus on one object blurry.things seem to shake when there reli not.
4:AND THE BEST ONE YET, [COLOR="Red"][/COLOR]BRAIN FOG.
THIS GIVES ME THE FEELING OF BEING IN A MOVIE, NOT A GOOD ONE LOL,
a feeling of being high. i zone out, words dont come out right, being in crowds r tuff brings on my next symptom
5: anxiety

thats about it my day to day life ,i live lost and confused no answers from the docs just a sinus infection thats it. i feel crazy and want to meet or talk to someone with the same probs as me.

the brain fog thing deff need some help with please is there n e one out there who can give some advise? , i know its not life threatning but very very very annoying , walking around like im high as a kite!:dizzy:
[FONT="Arial Black"][SIZE="4"][/SIZE][/FONT]
hello every one been a while sence my last post, for the reason every time I read the posts I get so mad!!!!!! how come no doc can help!!! im so sad and depressed and have no one to relate to!!!! all the y want to do is shove pills in my face!!!! or think im a hypocon..... i dont know how to spell that ill blame it on the brain fog.... not a funny joke b/c it prob is... n e way i just want to let everyone know im 22 very in shape eat right get plenty of sleep and go to the gym on a regular basic ,on the outside i look healthy no drugs of n e kind not even perscrips.

but i feel very not healthy!

the anxiety attacks i learned to control (knock on wood):)
i just came to the conclusion im not going to die!!! feels like it but im not.
i tarted by taking my meds then just sleeping with them by my bed then just bringing them with me when i go out, just the thought of them being there made me feel safe... now i can leaVE the house without them....
control your breathing and think of a pperson or place that made you happy then repeat to your self "this to shall pass "with deep slow breathing.
works for me. you can control your breathing then which controls your heart rate get that under control and u go thru the worst in my opinion.... if your heart rate goes up causes u to feel faint dizzy ect which amp the whole thing....


n e way thats a lil advice on anxiety.

my symptoms
came on a yr ago out of no where.. im down to having

brain fog !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
dreamlike state!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
things seem to move when there not!!!!!!!!!!!!!!!!!!!!!!!!!!!!
feeling like i have a sinus infection alot of the time!!!!!!!
loss of intrest not as out going!!!
my words dont come out right!!!
my hearing seems muffled like i just came back from a concert.....
pressure sharp pains in my ear with fluid mainly when i wake up in my ear...
my jaw hurts sometimes too weir one but have that too...


I FEEL LAND SICK, YA SO HOW PEOPLE FEEL ON A BOAT WELL I HAVE THAT ALL THE TIME WALKING AROUND DOING DAY TO DAY THINGS I FEEL LIKE IM FLOATING ALONG AND CANT RELI AKE IN EVERYTHING... SUCKS!!!!!:(


WELLL IF N E ONE WANTS TO TALK OVER THE PHONE ABOUT IT CAN CALL ME IT WOULD BE NICE TO HEAR SOMEONE ELES THEN READING...

MY EYES ARE BLURRY LOL

BY ALL:wave:
BE IN TOUCH PLEASE...
[QUOTE=high on life;4056462][FONT="Arial Black"][SIZE="4"][/SIZE][/FONT]
hello every one been a while sence my last post, for the reason every time I read the posts I get so mad!!!!!! how come no doc can help!!! im so sad and depressed and have no one to relate to!!!! all the y want to do is shove pills in my face!!!! or think im a hypocon..... i dont know how to spell that ill blame it on the brain fog.... not a funny joke b/c it prob is... n e way i just want to let everyone know im 22 very in shape eat right get plenty of sleep and go to the gym on a regular basic ,on the outside i look healthy no drugs of n e kind not even perscrips.

but i feel very not healthy!

the anxiety attacks i learned to control (knock on wood):)
i just came to the conclusion im not going to die!!! feels like it but im not.
i tarted by taking my meds then just sleeping with them by my bed then just bringing them with me when i go out, just the thought of them being there made me feel safe... now i can leaVE the house without them....
control your breathing and think of a pperson or place that made you happy then repeat to your self "this to shall pass "with deep slow breathing.
works for me. you can control your breathing then which controls your heart rate get that under control and u go thru the worst in my opinion.... if your heart rate goes up causes u to feel faint dizzy ect which amp the whole thing....


n e way thats a lil advice on anxiety.

my symptoms
came on a yr ago out of no where.. im down to having

brain fog !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
dreamlike state!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
things seem to move when there not!!!!!!!!!!!!!!!!!!!!!!!!!!!!
feeling like i have a sinus infection alot of the time!!!!!!!
loss of intrest not as out going!!!
my words dont come out right!!!
my hearing seems muffled like i just came back from a concert.....
pressure sharp pains in my ear with fluid mainly when i wake up in my ear...
my jaw hurts sometimes too weir one but have that too...


I FEEL LAND SICK, YA SO HOW PEOPLE FEEL ON A BOAT WELL I HAVE THAT ALL THE TIME WALKING AROUND DOING DAY TO DAY THINGS I FEEL LIKE IM FLOATING ALONG AND CANT RELI AKE IN EVERYTHING... SUCKS!!!!!:(


WELLL IF N E ONE WANTS TO TALK OVER THE PHONE ABOUT IT CAN CALL ME IT WOULD BE NICE TO HEAR SOMEONE ELES THEN READING...

MY EYES ARE BLURRY LOL

BY ALL:wave:
BE IN TOUCH PLEASE...[/QUOTE]
I was in the same boat ride as you. Felt everything you did. I still have it but not as bad. My journey has been a long one, it started Jan 2008. My life was over so I thouhght. No one could help me, every doc pushed me aside I had every test imaginable. Ears, MRI's,blood work cat scans, everything, So I diagnosed myself, I took xanax for a year and I had felt great, until I started feeling really weird, I felt like I was On a boat, I had visual disturbances, couldn't go out, couldn't look at carpets or floor with alot of design in them the stores just killed me, flashing couldn't see right, felt pulled to the floor,feeling of floating, derealization, brain fog.pressure in ears and behind eyes. anyhow I stopped xanax but still had to fight anxiety, it took me another 6 months to control that, I finally was sent to Vestibular Therapy, OMG!!! it really helped, I had to learn to retrain my brain. I am back to function level, I do have bad days, but realize I can over come this, I get real depressed about it alot, but pick myself back up and fight. Alot of these symptoms are controllable you should look into Vestibular Therapy, and get off any drugs you may take, clear out your head.I hope this helps you. Lord knows I still need support, knowing there are others like us can help. Fight be strong don't give up!!!!!!! We can't let this be our life. You know as I type this I fell like pure crap, but I know I gotta fight it I have too. There is help. I am here for anytime. Please PM me or reply. Take Care.
I'm a little lost at who is who,but I would like to give my comments.I became
dizzy about a year ago.I am a senior citizen,but think "I think young" I went to our local hospital,and got in their "new" program for "re-hab",and had several one hour exercises to help me.No medical person ever gave a diagnosis,but I received
a prescription to attend this new program.They gave me some test to determine if I had Vertigo.I don;'t remember the re-habbers ever asking me if it was ok to induce a vertigo condition,which I believed they did.I was apparently tested negative.This,I guess,allowed them to proceed with the "normal" Vestibular Inner
Ear Program.I would have never allowed them to induce a Vertigo condition.I
would have feared that I would be stuck with that disaster.At any rate,I did the
"look straight ahead" exercise,and was told to continue that after "graduation".
Also several exercises to improve my "balance",were to continue at home.I believe that our hearing and balance are closely allied within the same area in the head.
I believe that it is very complicated to treat an inner-ear problem,with our sense
of balance mechanism in the way.I take MECLIZINE for my dizziness,dropped the
"eyes straight ahead" caper.and have some balancing problems.I had zero trouble
with the ..."straight ahead " exercise.I have "permanent" depression,to go along
also, Good luck. Bill
Thanks for your input Bill. Yeah i definately know my condition is not inner ear related (had this confirmed via MRI brain and ENT specialist), I hope that you can sort out your symptoms. When you say you get "dizzy" what kind of symptoms are they (spinning/swaying/unbalanced/gait issues or sensations? etc). Yeah depression and anxiety are just something that we all have to deal with as we never seem to feel "normal", That is definately something that one has to learn to control in order to be looking in the right direction. Thanks once again for trying that little exercise out.
hi all! I have read every entry on this board and have most if not all of the same symptoms. First off, I never took accutane, so I don't fit in that category with some of you. My symptoms started 1/08 after a bad cold. I was violently dizzy for 2 days than over the course of 3 weeks that went away. All through the symptom phase I had ear popping, fullness, foggy head, jittery eyes, sensation of sinus congestion, strange sounds in ears and head...I am sure I forgot something :( , anyway during that time I saw my gp, who dx me with veritgo. I went to an ent for a second opinion and she dx me with ETD, TMJ and chronic sinusitis. She treated me for a month with a steroid pack and nasonex and I eventually went somewhere else . The next ENT agreed with her dx but said it sounded like I had Labs after initial cold. After this my symptoms, besides ear popping all went away. 18 months later they came back. Not as severe, but all were there. 6 weeks ago I thought I was getting a cold and ached all over. 2 days later, I was dizzy, foggy headed, ear fullness and popping, eyes made me seem loopy. I couldn't read without feeling strange. Went back to last ENT and he gave me more nasonex for ear popping. Course it didn't help me. I just keep pushing myself to go on as normal and symptoms now are mild and intermittent. Someone suggested allergies to me since I was achy and weak but that wasn't all the time. In fact I feel pretty great at night. The only testing I ever had was hearing and typical ENT testing ( air in ears, looking in nose, ears etc) t does make sense to me that it is stress related, I was going through a tough time right before this last episode. I am SO GLAD I am not alone but discouraged that this has gone on so long for me and ALOT longer for some of you. I feel like directing my ENT to these boards so he can see I am not crazy, which is the way he looked at me when I handed him my list of symptoms a month ago. I'll be anxious to read future posts and hopefully someone will find out what this is soon!
I have similar symptoms like everyone one else. I have been to a ton of ENTs with no luck! Recently I went to the neurologist and he couldn't find anything either. In a way it was good. He did not feel I was having migraines because my dizziness was pretty much every day and I wouldn't necessarily have a headache with my issues! So anyway I went to the eye dr, he found I did have astigmatism in one eye. He did feel that this could be causing some of my problem. Everything I have found online says is means its football shape but in my case its wavy. I just got my glasses today so I'm not totally sure yet if they are going to help me or not. A friend also found an article about magnesium and that it can help dizziness/vertigo. I have started taking vitamins, it is one pill with calcium, vitamin d and magnesium. I already knew I had the vitamin d deficiency but had never heard about a magnesium deficiency. The last week has been great for me! I have no idea what may have changed besides the vitamins! I wanted to post it just in case it may help someone else. My ears feel normal, still the ringing but that will always be there with tinnitus. I haven't had any headaches, fullness in my ears or pressure, no dizzy spells or anything! I hope that this may help someone else too.
hi im also a newbie on this message board so bear with me and i will try to be as good at explaining my symptoms as i can. about 15 years ago i went on holiday to the lake district and on my return began to feel quite unwell tired dizzy but not full vertigo unsteady on my feet and feeling very spaced out,i could explain the feeling as similar to how i would feel after a bad migraine attack which i have suffered from for most of my life, the cotton wool feeling in my head. i was working at the time in retail and in a busy enviroment. i constantly felt detatched and that i could not understand people properly, aftertaking my daughter and son to school one day and walking home like a drunk i went to the doctors convinced i had a brain tumour . the doctor did some balance tests which i found quite distressing as they made me feel very nauseous and said he thought i had an inner ear problem. i was given various medications non of which seemed to make any difference and told to rest i was ill for about 6 months which seemed such a long time to me and really knocked my confidence. eventually i felt better and life got back to normal.just recently i had noticed my eye sight getting worse and had an eye test my prescription had changed and i now have to wear glasses all the time and for reading. i had a bad headache on the day i picked up the glasses and when i tried to wear them the nextday i felt realyy ill and the vertigo and balance problems have returned in earnest also anxiety and panic attacks to boot no doubt because the thought of suffering this again is awful,i went to the doctors again and after a check over she gave me antibiotics for a throat infection eye drops for an eye infection and proclorperazine for the spaced out feeling and signed me off work for two weeks with the advice that if i do not feel significantley better by the end of week 1 to see another doctor who is an ent specialist. its now thusday of week one and there is no improvement so i think its back to the docs next week. Its the spaced out feeling almost like im looking through a gauze or a curtain even looking at my own hands typing this does not look right and so normal life is a bit scary at the moment the thought of going shopping fills me with dread although reading posts here makes me realise that im not the only one. you are right all us sufferes need solidarity.
I responded to this very thread about 2 weeks ago, was actually my first post. I shared much of the same symptoms on this very thread, a full 7 days went by with not a single person responding (did not help my confidence much) I finally was able to delete it.

But yes I have much of the same symtoms. balance off, 3 major dizzy spells over 3 months, pulsating tinitus in left ear, hearing comes and goes in the left ear. Have dizziness that does not reach major proportions between major spells. The 3 major spells left me very sick for the day, after not being able to stand up. When I turn my neck ever so slightly both directions I get the snack cracking and pop inside my head. Dr says nothing to worry about, I go again today actually.
Hello all,

I have been dealing with inner ear isssues for a while as well and can really relate to all of your symptoms regardless of the inner ear diagnosis. Mine happened after a viral infection.

I just wanted to add that when it comes to the inner ear it is really heard to diganose what exactly is the real issue going on. For instance... if the inner ear is affected we get dizzy, balance problems etc. BUTTHE IMPRTANT THING TO REMEMBER IS THAT A WHOLE OST OF SECONDARY SYMPTOMS CAN ARISE FROM THAT. sUCH AS... THE BRAIN FOG, MENTAL FATIGUE, ANXIETY, TREMOR LIKE FEELINGS, VISUAL GAZE PROBLEMS, EYES JUMPY, STIFFNESS AND SOARNESS IN THE NECK, HEAD, AND EARS.

All those secondary spin out affect symtoms are very very common with iner ear dysfunction regardless of the diagnosis. To explain.. our balance system is comrpised of balance sensors in the brain. inner ear, eyes and base of neck. All of those components allow us to keep our balance system in baalance. When one is off then the other sensors are off hence the stiffening in the neck and shoulders to compensate.

For anyone who hasn;t read the book, :The BRain THat Changes ITself". read it especially the first chapter. There is a device called the brain port that isn't yet FDA approves in the states yet that is helping people with vestibular dysfunction retrain the brain to recreate balance where traditional vestibular excercises haven't worked or someone has platued on them.

Never give up hope and just realize that all these secondary symptoms are common with inner ear dysfunction. Hopefull soon we will be able to benefit from the brain port device!

Good LUck to everyone!





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