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Old 05-11-2007, 07:28 PM   #1
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Join Date: May 2007
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Posts: 85
herofix HB User
Exclamation Long time reader, first time poster

Greetings everyone,
I've been reading these messages for some time and feel that now is the time to tell my story and hopefully get some feedback.

In a nutshell (as much as is possible with these things!), my first encounter with vertigo was in October of 2005. Out of the clear blue I awoke on a Saturday to feeling "drunk" with every turn of my head, esp. to the left. Got steadily worse over the course of the day and ended up in urgent care, where the less than helpful doc on call said "you've got positional vertigo! I can tell because you're holding your head so still against the wall". As it turns out, he was wrong, of course. He gave me Antivert and a Z-Pak and told me to go home. I vomited that night and felt slightly better the next day, but had acute vertigo for over a week and was unable to drive. I saw an ENT a few weeks later and he diagnosed VN just by my symptoms, which I still believe was correct. It very gradually began to fade, and after a minor recurrence about 1 month after initial episode, it pretty much went away.

Fast forward to March of this year. While flying a kite with my daughter I sort of turned myself sideways and fell to the ground. I didn't hit my head but landed kinda hard. Over the next few days I began experiencing vertigo again, this time upon awakening and sitting up in bed. I know it was vertigo because I'd get the spins and almost fall over on my side. But this time it was the RIGHT side. Went back to the ENT and he did the Dix-Hallpike test and since I had nystagmus beating to the right, diagnosed me with BPPV and told me to "wait it out" but to only sleep on my left. I did this, and it got a bit better (no more spins upon sitting up) but I then began feeling the "brain fog" of being off balance through most of the day. This would come and go, trading places with minor headaches that I'd sometimes wake up with. On some days I didn't have the fog or headache at all! So I went back to the ENT several times and he couldn't come up with anything to help. (He was a super old dude; 72, he told me, so maybe he wasn't up on 'the latest'). SOOOO I ditched him, returned to my primary and said "HELP!!". Which he did, and this is where my story gets scary.

He ordered an MRI to rule out any "nasty stuff" as he called it, and the results showed that although I don't have a brain tumor per se (or AN) I apparently have a "2-cm arachnoid cyst of the cisterna magna, causing a minor mass effect on the left hemisphere of the cerebellum". HOLY *%&@!!! So my primary referred me to a neurosurgeon in town, but I can't see him until Wednesday. Based on my (borderline obsessive) research, these cysts are often present from birth and many people have them without knowing it because they never cause any symptoms. Still, I am FREAKING OUT. Anyone else have this diagnosis, and if so, what was done about it? If they're symptomatic the docs usually remove them, and then you're talking BRAIN SURGERY!! Even minimally invasive procedures still make a hole in your head where they poke around in your brain.

Oh and the latest chapter started last night, when I started feeling sorta "ringy" in one ear and then felt a non-directional dizziness/vertigo feeling that made me nauseous. Naturally I assume this has something to do with the cyst, which may (or may not) even be growing at this point. Add to that my general anxiety about the whole situation and I was ready to go to the ER just so I could see a neurologist on call. Is this Meniere's that I'm developing now? Anyone with soothing words of advice would be MUCH appreciated!!

Thanks for reading,
Dan

 
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Old 05-12-2007, 12:49 AM   #2
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Join Date: Apr 2007
Location: South Africa
Posts: 87
amlp HB User
Re: Long time reader, first time poster

HI Dan, welcome to the board. I'm sorry i know nothing about the condition you described other than what i have just read, but by the looks of things they will be able to sort it out for you and you will be fine. I can imagine you must be going through all kinds of anxiety and fear which is going to make you hyper vigilant to anything going on in your body right know. I know it's difficult but try and stay calm, at least they have found out what is wrong and can treat it, just think, after that, you will be fine. Having a diagnosis is the first step in fixing you up. i wish you strength, and keep us posted. You will always have support, here at the board.

 
Old 05-12-2007, 06:35 AM   #3
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Join Date: Apr 2007
Location: Stoneham, Maine, USA
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dizzyandsad HB User
Re: Long time reader, first time poster

Quote:
Originally Posted by herofix View Post
Greetings everyone,
I've been reading these messages for some time and feel that now is the time to tell my story and hopefully get some feedback.

In a nutshell (as much as is possible with these things!), my first encounter with vertigo was in October of 2005. Out of the clear blue I awoke on a Saturday to feeling "drunk" with every turn of my head, esp. to the left. Got steadily worse over the course of the day and ended up in urgent care, where the less than helpful doc on call said "you've got positional vertigo! I can tell because you're holding your head so still against the wall". As it turns out, he was wrong, of course. He gave me Antivert and a Z-Pak and told me to go home. I vomited that night and felt slightly better the next day, but had acute vertigo for over a week and was unable to drive. I saw an ENT a few weeks later and he diagnosed VN just by my symptoms, which I still believe was correct. It very gradually began to fade, and after a minor recurrence about 1 month after initial episode, it pretty much went away.

Fast forward to March of this year. While flying a kite with my daughter I sort of turned myself sideways and fell to the ground. I didn't hit my head but landed kinda hard. Over the next few days I began experiencing vertigo again, this time upon awakening and sitting up in bed. I know it was vertigo because I'd get the spins and almost fall over on my side. But this time it was the RIGHT side. Went back to the ENT and he did the Dix-Hallpike test and since I had nystagmus beating to the right, diagnosed me with BPPV and told me to "wait it out" but to only sleep on my left. I did this, and it got a bit better (no more spins upon sitting up) but I then began feeling the "brain fog" of being off balance through most of the day. This would come and go, trading places with minor headaches that I'd sometimes wake up with. On some days I didn't have the fog or headache at all! So I went back to the ENT several times and he couldn't come up with anything to help. (He was a super old dude; 72, he told me, so maybe he wasn't up on 'the latest'). SOOOO I ditched him, returned to my primary and said "HELP!!". Which he did, and this is where my story gets scary.

He ordered an MRI to rule out any "nasty stuff" as he called it, and the results showed that although I don't have a brain tumor per se (or AN) I apparently have a "2-cm arachnoid cyst of the cisterna magna, causing a minor mass effect on the left hemisphere of the cerebellum". HOLY *%&@!!! So my primary referred me to a neurosurgeon in town, but I can't see him until Wednesday. Based on my (borderline obsessive) research, these cysts are often present from birth and many people have them without knowing it because they never cause any symptoms. Still, I am FREAKING OUT. Anyone else have this diagnosis, and if so, what was done about it? If they're symptomatic the docs usually remove them, and then you're talking BRAIN SURGERY!! Even minimally invasive procedures still make a hole in your head where they poke around in your brain.

Oh and the latest chapter started last night, when I started feeling sorta "ringy" in one ear and then felt a non-directional dizziness/vertigo feeling that made me nauseous. Naturally I assume this has something to do with the cyst, which may (or may not) even be growing at this point. Add to that my general anxiety about the whole situation and I was ready to go to the ER just so I could see a neurologist on call. Is this Meniere's that I'm developing now? Anyone with soothing words of advice would be MUCH appreciated!!

Thanks for reading,
Dan
I had a neuro appt yesterday where I was offered an MRI but told they sometimes yeild results of cysts or something slightly abnormal that is no big deal but cause they patient to freak out so sometimes doesnt help alleviate stress. I got one done and waiting on results so I am sure i will feel same way if it finds something! Keep us posted!!

 
Old 05-12-2007, 07:04 AM   #4
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stargrave HB Userstargrave HB User
Re: Long time reader, first time poster

I don't know much, or anything about cysts.

Butr as you, and dizzyandsad posted it might ot might not be connected, since it might be there, but coul well be asymptomatic.

I pretty much have some or your same symptoms, or at least started that way, with BPPV like attacks, but I never tested positive for BPPV, even as I do hace a right ear dysfunction, detected by VNG's caloric test. Dis they put you throug VNG?

This test is usually the most accurate, or at least focused, to detect inner ear abnormalities, since it directly measureas ear's response to a strong and quick stimuli. Chances are that if somehting is in there it might be the direct cause, and the cyst, just happens to be there.

I'm not an expert but it's just a thought. Another thing that docs should know, is that most of the time nystagmus, it's different if it's caused by a central cause(where I think cysts belong), compared to a peripherial(pure vestibular) cause.

And from the little I know about that, a central case cause a more permanent dizzy feeling, that can't be present even wihtout a relative change in position, and it's not self limited, like in the peripherial case, meaning, the first keep on and on without a sensible decrease in intensity through time, the secodn one might me more intense but it will decrease in intesity through time.

As for Meniere's it doesn't sound like it, but the best confirmation for this, aside the strong episodic attacks, is if you have experienced some notieceable hearing loss in your ears, specially on the affected one. But sure your docs know about this and they will rule it out after testing and a background research on your case.

So in those terms, they could make a confirmation or a different DX, even taking the cyst in account. Bus as I told you, they might even have to remove the cyst in any case, even if it's asymptomatic I don't know about that.

Best of luck, and be calm, I'm sure you're going to find out the cause of your vertigo soon.

Last edited by stargrave; 05-12-2007 at 07:13 AM.

 
Old 05-12-2007, 09:09 AM   #5
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Join Date: May 2007
Location: So Cal
Posts: 85
herofix HB User
Re: Long time reader, first time poster

Hey thanks alot for all your supportive words guys. Of course after I posted I realized I had left out the fact that NO I have not had the full vestibular assessment this time, though I did back in '05 for the VN. So hopefully no self-respecting neurosurgeon would just want to slice my head open without a fuller picture. I may even just be nauseous from the stress/anxiety, who knows? I really don't feel dizzy per se, esp. in the morning just after getting up (like now). But my right ear definitely feels different, slightly full and ringy at times. Hopefully that's what's up. Again, thanks alot for the support and I'll post again after Wed the 16th when I have the neuro's opinion (and order for more testing). In the meantime, has anyone learned if we're just more "susceptible" to these inner ear problems once we've had one? It seems like two or more incidents point in that direction, seeing as how I never had a problem before 10/05!

Thanks,
Dan

 
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