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Old 12-24-2004, 11:17 AM   #1
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suzyisdizzy HB User
Dizzy for 1 1/2 years 24/7

Hi fellow dizzy friends
Here is my dizzy story:

1998: woke up dizzy, stayed in bed for 3 hours until it passed and was okay.
Six months later: woke up dizzy again, couple of hours later it passed.

Once every few months I'd have a slight "dizzy-spell" that would go away in a couple of hours.

Fast forward to July 2002: I was just hanging out with my boyfriend at home when I suddenly became quite dizzy. I kind of paniced. He didn't think anything of it since I had complained of dizziness in the past....but this time it was a bit worse. I went to bed that night and figured I'd be better in a few hours as I always was.

The next few days I felt "weird" and spacey. My apartment building was doing repairs and they had redone the floors in the apartment nextdoor and the fumes were awful! I figured the spacey feeling was from the fumes.

August 2002: One month after that July spell. I woke up very dizzy. And I had diarreah (not sure related to the dizziness) and was nauseous. From August 2002 to this day I have been dizzy 24/7. I've never been the same since.

In the beginning, it was REALLY REALLY BAD! I couldn't watch tv because the movement on the screen made my dizziness so much worse. I couldn't lay down because it made my dizziness worse. No matter what I did it would make the dizziness worse, and I was constantly dizzy anyway. I didn't eat for about a week because I was nauseous.
My symptoms were:
Eye tracking problems (eyes couldn't keep up with movement)
Visual distrotion (the floor seems tilted)
Can't go to grocery stores, the visual stimulation is too much!
Brain fog
Near fainting feelings
Panic attacks
Feeling like I'm "going crazy"
Poor hand/eye (could barely write a letter in the beginning)
hands and feet feel like they are vibrating when I'm at rest
headaches
leg aches
exhaustion
That's all I can think of for now but I'm sure there's more.

I have seen 2 ENTs (no help from them, big waste of time), a neurologist (another waste of time), and a neuro-otologist (still working with him doing tests).

I have had blood work done: Normal
Neuro examine (refexes etc): Normal
CT Head scan: Normal
Hearing Test: Normal
MRI Brain: Normal

I am going to be getting some inner ear testing done in January.

As for medication, all I have taken is anti-nausea over the counter meds. And even those I barely ever took any. I basically have taken no medication for this disorder.

I can't believe this is happening to me. And with all the tests as "normal" I'm made to feel like I am making this all up. Only people like you guys understand what I am going through. It is so frustrating for even doctors to suggest it is just panic attacks, or worse to tell me to just "live with it".
This has distroyed my life. I am terrified I won't ever be the same. I keep the faith by remembering how bad off I was in the beginning and how I am a lot better now..... but I am no where near "better".

Well, that is my story. Thanks for listening

 
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Old 12-24-2004, 12:24 PM   #2
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hbep HB Userhbep HB Userhbep HB User
Re: Dizzy for 1 1/2 years 24/7

Hello there,

Sorry you're feeling so crap. Just wanted to welcome you to the board. I have had many of the symptoms you've had - been ill 2 yrs 4 months. I improved a great deal and went through a fantastic (almost) remission from symptoms for 3 months, but am in a bad spell at the moment. Anyway, I also saw a neurotologist, my initial diagnosis was uncompensated vestibular neuritis (labyrinthitis without the hearing loss) my diagnosis changed to migraine associated vertigo, with possible peripheral vestibular damage thrown in. I am now on migraine preventatives. I have also done vestibular rehab therapy, which I slacked off from but am now getting back to. I tell you this as no doubt the neurotologist will probably advise one, or both, of these courses of action.

Once you've had the tests - I am sure the neurotologist will firm up a diagnosis of some form of vestibular disorder, either MAV or VN or lab etc. As your other tests are clear it certainly sounds, from your description, pretty much a certainty that, that's what you have.

I sympathise with the feeling that you can't believe this is happening to you, I've had that thought many times. You've caught me in a bad spell - feeling crap for X Mas so not exactly chipper, but I have felt so much better, and still do, even though I'm feeling bad at the moment, compared to when it first started. Recovery is slow, and it isn't linear, but you do improve. For me the first year and half or so was the absolute worst of it.

You will find a lot of people who understand what you're going through here, this board has been the most amazing support to me.

Just on a side note, you're only the third person I've come across who describes a vibration sensation. I've recently developed this in my body off and on - very odd. I have wondered whether it's migraine related - a fellow MAVer, now cured, also got it. Don't know, it's just very strange.

Anyway, I wish you as good an X Mas as is possible,

best,

hbep
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Last edited by hbep; 12-24-2004 at 12:25 PM.

 
Old 12-24-2004, 01:54 PM   #3
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suzyisdizzy HB User
Re: Dizzy for 1 1/2 years 24/7

Thank you so much for your reply.

I have consider it may be MAV, but I'm not sure if it would start out so bad and improve if it was that?
I had my first migraine when I was 19 years old (I'm 36 now). My first migraine was the absolute worst! I went blind in one eye and half blind in the other, and then the headache hit. I had migraines off and on from that point. Almost always associated with my period.
I have a lot of visual symptoms of migraine, more so than the headaches.
I get vibration in my vision. Everything is shimmering or vibrating quickly.
Can migraine damage your vestibular nerve?
Anyway, I hope to find an answer someday.
Thanks so much for your suport

 
Old 12-24-2004, 02:31 PM   #4
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hbep HB Userhbep HB Userhbep HB User
Re: Dizzy for 1 1/2 years 24/7

Hi Suzy,

I have to admit, after your second post, there's never any saying for sure, but considering what you also said in your first post - headaches - leg aches, along with a history of migraine, in puts you right in the potential MAV category.

As for starting off bad and getting better. There is no definitive trajectory for MAV, although some ill informed stuff written on MAV might indicate there is. For example there is a myth that to have MAV you need to have periods of remission and then attack, but this simply isn't true. In as much as it's an odd condition it can manifest in odd ways. What you describe wouldn't rule it out. The sad thing is how ill informed people are in general. Considering the docs you've seen, I'd've thought someone would have made the connection to your migraine by now - at least tried you on one of the dailypreventatives.

Yes, it is thought that MAV can damage the vestibular nerve, although this is only a hypothesis - it's impossible to tell what has caused peripheral damage - apart from I suppose in rare cases of bacterial labyrinthitis, or gentamicin toxicity, that kind of thing... If MAV has caused the peripheral damage, then you effectively end up with MAV and VN. That said, there is no reason whatsoever to assume you either do or don't have peripheral damage. All of your symptoms could happen if you simply have MAV with no peripheral damage. The two disorders can mimic each other very closely.

In your shoes, whatever happens, I'd get put on a daily migraine preventative. Even if you have vestibular neuritis, with a headache history like that it would slow down you compensation process and needs treatment. If all of your symptoms resolve with a daily preventative, then you know you're solely dealing with MAV. Trying a preventative with a certain history of migraine is a bit of a no lose situation. It could either cure you outright, or help to cure you in the long run.

A few people have tried pizotifen (sanomigran) on this board with good results. I am on it, but only for a month ish so far and too low a dose to tell if it's doing any good. Also whether I suffer from migraine is more in question. You know for a fact you have migraine, you just don't know whether the dizziness is attributable to it. In your shoes I would push the neuro oto for a daily preventative,

best,

hbep
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Old 12-24-2004, 02:51 PM   #5
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crazylabyrinth HB User
Re: Dizzy for 1 1/2 years 24/7

Hi Suzy - welcome - I have been dizzy 2 years (dx inner ear dysfunction from labyrinthitis) so I know how you feel.

From your first post, I thought hmm maybe BPPV.

But I must say from your second post and your history of migraine plus your visual/migraine symptoms - it could possibly be MAV for you. We cant diagnose as we are not doctors so I would suggest sticking to your Neurotologist and getting the inner ear testing done as planned. DO keep us informed about how you get on.

With MAV although the dizziness CAN be constant, there are often other pointers I am told, like migraine or history of it in the family, as well as visual/auras/flickering etc - just as you explain. As Hbep says, this puts you in a possible category for MAV. Esp with your periods of remission as this is "typical" MAV.

Whatever the cause, we are here for you xxx

Last edited by crazylabyrinth; 12-24-2004 at 02:52 PM.

 
Old 12-24-2004, 04:29 PM   #6
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suzyisdizzy HB User
Re: Dizzy for 1 1/2 years 24/7

thank you again for taking the time to reply

I would also like to mention that I do get some strange feelings in my left ear. A "fullness" (although I'm not sure that is the right word for it). And I do have slight ringing in my ears. There have been times when my ears were really bothering me and I have been at the doctor and asked him to check them and they ALWAYS say they look fine! Which always amazes me because they don't feel fine.

I don't know what is causing this "pressure" in my ears. Maybe it is still possible MAV and it is a problem with the blood flow around the inner ear???
Who knows? I have been racking my brain for 1 and a half years now trying to figure this thing out. I would suspect that I have VN, but, that fact that I had a few of those "attacks" a couple of years ago makes me second guess that diagnosis.

PS, Does anyone know if an MRI without contrast would miss anything important? I just had a regular MRI of my head (not neck I don't think) and it was without contrast.

Have a Merry Christmas

 
Old 12-25-2004, 12:26 AM   #7
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hbep HB Userhbep HB Userhbep HB User
Re: Dizzy for 1 1/2 years 24/7

Hi there,

Yes, MAV can affect the ears - it can cause the full feeling in your ears, tinnitus, pain in the ears and fluctuations in hearing. I don't think they are clear about exactly HOW migraine affects the ears, or indeed, causes dizziness. There are still debates as to what exactly causes migraine, but they do know that it can affect the ears. If you put Robert A Battista in to a search + Migraine-Associated Vertigo - it will bring up a v. good article on the topic. Again, a lot of people think because they can feel some disturbance in their ears it must be their ears, not migraine, this isn't true. In fact I think the majority of MAVers do experience some ear symptoms. As you say, generally it's nothing that can be seen on examining the ears.

I was so headachey and lightheaded yesterday - I forgot to mention that you'd had dizzy spells initially followed by non dizzy periods. It's possible you were having dizziness as a migrainous arau intermittently (you don't have to experience a headache with the dizziness, in the same way people have visual auraus with no headache) which then subsided when the migrainous activity calmed down. As I said this could then have tipped over in to a more permanent migrainous condition. Do you know if those initial dizziness periods coincided with your monthly cycle? That can also be a bit of a give away too - especially as you mention hormonal migraine. There is also a link btwn BPPV and migraine - migraine can trigger it - that could be playing a part.

Again, I can't say with any certainty you have MAV (although I'd be willing to place a fairly large bet on migraine playing a part in all this) but I would definitely bring up your migraine history with the neuro oto if you haven't already done so. Generally speaking, if someone has a migraine history as obvious as yours, and develops a chronic dizzy condition, generally it's advisable to try a daily migraine preventative, as if it is MAV, this type of treatment can be very succesful. If it isn't MAV, you haven't lost anything by trying. Again, I'm amazed the neurologist wasn't better informed at the connection btwn migraine and dizziness. Although a lot of ENT's and some neuro's are at a bit of a loss when it comes to dizziness.

I wouldn't worry about the MRI - mine was without contrast and everyone I've seen (a very good team in a neurotology clinic) have never questioned that it was clear and therefore no problem. Everyone, prior to getting a diagnosis, panics that they must have something dreadful - the type of thing that would show up on an MRI - when the vast majority of people's conditions are attributable to vestibular disorders. If you've had an MRI and it was clear I would trust in that.

Happy X Mas,

hbep
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Last edited by hbep; 12-25-2004 at 12:32 AM.

 
Old 12-25-2004, 10:29 AM   #8
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invention1 HB User
Re: Dizzy for 1 1/2 years 24/7

Quote:
Originally Posted by hbep
Just on a side note, you're only the third person I've come across who describes a vibration sensation. I've recently developed this in my body off and on - very odd. I have wondered whether it's migraine related - a fellow MAVer, now cured, also got it. Don't know, it's just very strange.

Anyway, I wish you as good an X Mas as is possible,

best,

hbep
Merry Christmas to you as well, I hope we can all make the best of it.

I have a sensation I call "earthquakes" which may be like this vibration sensation. Any movement seems to be amplified. If I stand on, say, a bridge, every passing car feels like an earthquake, plus my own heartbeat feels like an earthquake. It is a very strange sensation, and I use it as an indicator of how good or bad I am doing, maybe time to take more Naproxen Sodium and Feverfew.

 
Old 12-25-2004, 10:41 AM   #9
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invention1 HB User
Re: Dizzy for 1 1/2 years 24/7

Quote:
Originally Posted by suzyisdizzy
thank you again for taking the time to reply

I would also like to mention that I do get some strange feelings in my left ear. A "fullness" (although I'm not sure that is the right word for it). And I do have slight ringing in my ears. There have been times when my ears were really bothering me and I have been at the doctor and asked him to check them and they ALWAYS say they look fine! Which always amazes me because they don't feel fine.
:
I have the identical symptom - I feel as if someone stuffed an olive just in front of my ear, also the left. There is nothing in the canal or eustacian tube, and the sensation is just in front and deep inside the skull.

I also have experienced the migraines. I wonder if VN can devolve into MAV, or perhaps all these categories blend together. I had an ENT doc say that the migraine was an effect of VN, not a cause. OUt of five episodes, three have not been associated with migraines, one definitely was (I was treated to the full aura, photophobia, vomiting and so on) and the next, I definitely have photophobia, and a wee headache last week, but "I knew migraines, and let me tell you, you are no migraine" I says to it, to quote a famous political debate.

I am afraid of prophylactic migraine medicines. Some of them, Zomig in particular, mess about with the serotonin system. These should NOT be mixed with antidepressants such as Prozac that also mess about with the serotonin system. Both medicines are in the Selective Serotonin Reuptake Inhibitor class, (SSRI). If you are on an SSRI, and your doctor wants to put you on Zomig, question his sobriety, ancestry and parentage, please.


 
Old 12-27-2004, 04:30 AM   #10
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Re: Dizzy for 1 1/2 years 24/7

Invention,

Technically Migraine cannot cause VN, but the disrupted bloodflow which occurs during migraine can damage the vestibular apparatus (so the theory goes..) which leaves a permenant stable deficit, in exactly the same way VN does so would be diagnostically indistingishable from VN. Except of course it's more likely to happen again.

Contrary to popular belief migraines are not headaches, they are vascular events (disruptions in bloodflow), which sometimes result in a headache (nobodies exactly sure how it causes a headache- but some believe it's through the pain receptors on the scalp which have been starved of oxygen). So it is fairly common to have a migraine with no headache or other symptoms, or have other symptoms without the headache, or just have a headache. Different people seem to suffer migraines in different ways.

The inner ear is one of the most sensitive organs (and is supplied by the smallest capillaries) in the body, so it unsuprising that it can be effected by migraine. It is much more likely to be effected than the eyes for example, and the damage it leaves may be permenant (which then needs to be compensated for and the patient recovers). Certain peoples primary migraine complaint is visual, others is headache, for others it's vestibular.

Some doctors think that having VN can leave the vestibular more sensitive to an underlying migraine condition (which may have previously been asymptomatic), others think that in those cases MAV was the original cause. Migraine can also cause people who have compensated, to decompensate and certainly the stress and anguish of having vertigo 24/7 is enough to trigger a migraine in sufferers, so it's fairly common for people to get into a viscious circle.

Last edited by BennyGibb; 12-27-2004 at 04:32 AM.

 
Old 12-31-2004, 06:27 AM   #11
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silver007 HB User
Re: Dizzy for 1 1/2 years 24/7

Quote:
Originally Posted by invention1
Merry Christmas to you as well, I hope we can all make the best of it.

I have a sensation I call "earthquakes" which may be like this vibration sensation. Any movement seems to be amplified. If I stand on, say, a bridge, every passing car feels like an earthquake, plus my own heartbeat feels like an earthquake. It is a very strange sensation, and I use it as an indicator of how good or bad I am doing, maybe time to take more Naproxen Sodium and Feverfew.
I just started on the board and have posted to an VN thread. I was diagnosed with Meniere's which I really sortof disgarded as just another guess. I just wanted to say that sometimes I'll get this feeling that I describe as feeling like solid steel. I feel very heavy and "solid". It's only happened a few times, the last couple times in the last couple weeks. When it happens I feel as if I'm so incredibly still and solid. It's not a bad feeling, sortof funky but definitely not 'right'.

 
Old 12-31-2004, 08:44 AM   #12
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treefarmer HB User
Re: Dizzy for 1 1/2 years 24/7

Great thread you guys, especially all the info you've provided hbep. As you know I'm toying with this, and I'm thinking more and more this MAV crap has been the problem all along. So, if one gets rid of the migraines, does it mean that MAV will eventually go away??

I've also found another good article on MAV and I've asked the moderator for permission to post it in the sticky archive. Will advise when it's there.

Happy New Year!
T

 
Old 01-04-2005, 10:54 AM   #13
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DEEZELL HB User
Re: Dizzy for 1 1/2 years 24/7

Hi Iam new too this. I am not looking for a cure but someone too listen, because it seems like the doctors that I have seen think Iam crazy(My husband too!) Mine started off with a very sharp pain on top of my head ouch!!! It has not let up since.One night I had a very bad feeling like I had no control of balance everything was moving but me. I went to the hospital panicked so bad I was shaking uncontrollably, they did a ct scan, everything was normal. How can that be when you feel like that! This pain is now in my ear and won't quit hurting, it effects everything on my right side(throat pain, teeth, eye pain, constant fullness feeling in my ear), but my doctor keeps saying my ears look fine,(which i've been to him three times about this) What is my next step, cause I don't no what to do? Sorry for Whining!

 
Old 01-04-2005, 01:38 PM   #14
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Mica09 HB User
Re: Dizzy for 1 1/2 years 24/7

Deezell, do not be sorry for whining!!! I know exactly were you're coming from. I hear you and a lot of people here will say the same. You've come to the right place for support. Because they don't see anything doesn't mean there is no problem. Most of us here had/have the same experience with the doctors.

What type of doctors did you see? Have you seen a neurotologist?

You will meet a lot of knowledgable people here that will help you a lot.

Last edited by Mica09; 01-04-2005 at 01:39 PM.

 
Old 01-04-2005, 01:41 PM   #15
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treefarmer HB User
Re: Dizzy for 1 1/2 years 24/7

Deezell,

When you say your "doc," I assume you mean a general practitioner or internist. If you are having problems with dizziness and fullness/sensations in your ear, I would suggest seeing an ENT (ear, nose, throat). Many of them don't know a ton about inner ear (vestibular) disorders, but they are usually a far sight better than a regular GP, who typically knows virtually nothing. And most all people with inner ear stuff start there (with ENT).

T

 
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