vertigo and or dizziness?

[rod44]

For the past few years I have suffered vertigo and dizziness along with other non-specific vague symptoms like most people here so I am not going into them now.

The vertigo started acutely but the dizziness was gradual. All the other symptoms came and went and if I did go to my gp about them they were labelled nothing to be concerned about and then dismissed.
Because of the severity of the vertigo I had no choice but to go to a doctor, because of an accompanying Nystagmus the doctors were able to confirm that I had vertigo and thus send me for further investigations, however the dizziness was a different story with my family doctor thinking that the vertigo and dizziness  were one and the same.
The vertigo I experienced was of the room spinning, like if you spin around very fast on a rotating chair then stop suddenly, you know your stopped but the room continues to spin, even when your eyes are closed or in the dark. This could happen when sitting, standing walking driving ect. The spinning happened when I would move my head especially towards my right side, it would last for a few seconds to maybe 1 min. this could go on for months then stop then start again. Headache is worse during vertigo.
The dizziness is there all the time, feeling light-headed and unable to focus. Drunk even. Like the brain fog except I feel alert. Sorry but that’s the best way I can describe it.  
This caused much confusion when I would visit my doctors leading to incorrect diagnoses and as I say much confusion even suggestions of eye sight problems even after a sight test was ok, add to this the fact that both my GP and ENT doctors were completely lost when I eventually got a DX of CM/SM having to look it up in a medical dictionary.

I am wondering if others out there with CM/SM have had similar experiences with vertigo and dizziness.
ROD

[selmaS]

  Hi and welcome to the Chiari forum.

The member you addressed your reply to, is not an active  member....you may want to send her a PM ( private message) that will generate an e-mail indicating someone is trying to communicate.

I do believe jorlex had the posterior fossa decompression surgery for Chiari as have I...

There are many related conditions that can add to having symptoms like vertigo and  dizziness.....

Do find a true Chiari Dr to see how your Chiari is affecting you and your overall health.

[Ginger2222]

Please read my other reply to your situation.

[Ginger2222]

I was diagnosed with Chiari about 10 years ago, while undergoing numerous tests for my dizziness. I am 50 years old, but I can remember back in high school having to have friends help me walk, at times. Mine is usually positional (right now, it's when I'm laying down and look slightly to the left.), however, it can change at any time. My ENT (whose specialty is Ears ( I have a tube in my right ear, as I'm a flight attendant, and my ear will not clear without the tube) believes my "dizzy disease", as I have called it for years, is due to the Chiari. I was told at the time, that they could do surgery, but there was no guarantee that it would help. I chose not to have the surgery. Can you please tell me what surgery you had? In the recent past, I have fallen numerous times, mainly when I stand up. I also know that feeling someone mentioned about sitting on the side of the bed, until you are sure you can safely stand up. I started looking up information today, as I've been "hearing strange sounds" inside the right side of my head. It scares me, because it's as if something is "tearing"? I'm not sure if that makes sense, but I am curious as to what surgery you had and if it was supposed to fix the dizziness. By the way, my doctor does a maneuver and prescribes a steroid pak and Valium. These used to work, but I'm not sure any more. Thank you, Ginger

[sandy629]

  ive had the dizziness and the vertigo and the tinnitus, i also will not drive, that was the major choice for having surgery. i was a cna and i went from house to house i almost got into too many accidents from the dizziness, and i  almost went out a window with a resident coz the tinnitus was soo loud i didn't hear another aide yelling at me and when i got up the vertigo and dizziness was soo bad i lost our balance. i am like jorlex  i have my own personal buzz going  even with the hang over the next day LOL    i had the vertigo test done 2x's and that is enough (ouch)

[selmaS]

  If there is neway we can help let us know....many who have had surgery, like myself have posted a journal of our experience...just run ur cursor over the name (blue hyper link) and click this takes u to that members profile page and u can view their journal from there...this may help u with ur decision....

I would also suggest , seeing a few other Drs for more opinions.

    <3

[tratra302]

Thank you So much SelmaS...I do not yet know the exact surgery date..I go back to the nero surgen on feb 27th..I was in shock when i was told that i had chiari malformation and needed surgery..So i told the dr to give me a month to pray about it and go over things with my family..He will set the date when i go back to see him..I will up date when i find out..Thank you for your support and the prayers:)

[selmaS]

  Hi and welcome to the Chiari forum.

  I hope u post ur surgery date so we can post a prayer thread for u....we do that for members ....we support and try to uplift when we can and if we know the date.

I also had surgery and know it is a roller coaster ride in itself ...just the emotions alone...

If there is a way to we can be of help, just ask : )

       "selma"

[tratra302]

Just found out that i have chiari malformation..I have been sick for 4 yrs now..It all started out with getting really dizzy one day, and and scence then everything has just gone down hill..Iv'e had to be in a wheelchair everytime i go out into public because the dizzieness is so bad that it's hard for even walk, and havent been able to drive ither for 2 yrs...These are the first stories i have read about with people being and getting vertigo/dizziness as bad as mive..I go in next month to have decompression surgery...Please keep me in your prayers that all works out well..Thank you and god bless!!

[rod44]

That would be supper thanks Selma.

[selmaS]

U r welcome....if u want more info I can PM a link to a friend who has delt with this and can tell u her experiences.


"selma"

[rod44]

Hi Selma,
I checked out the POTS, PTC and DYSAUTONOMIA info you sent and can relate to it.
The cardiologist I was attending felt that there was something like that going on saying he felt “there may be some sort of nerve degeneration involved” causing the BP problem. All other tests were within normal ranges.
I did not have an echocardiograms
don’t know yet when the table tilt test is as they don’t do it in the Hospital I attend so I must go to another hospital.
I will quiz the NS about this pots thing.

Thanks again for the info.
ROD  

[selmaS]

hmmmmmmmmm......

Well I would imagine that is y they r doing the tilt table testing for......let me check....if not, I will create one....lol.....


"selma"

[rod44]

Hi Selma,
Yes I do have BP spikes.
No mention of POTS or PTC by the doc.
Any info you can give about POTS or PTC would be good, is there a health page on these here?
ROD

[selmaS]

Hi ROD.....do u have BP spikes?....r they looking to see if u have POTS or PTC?

I know that chiarians can and do get these conditions along with chiari.


"selma"

[rod44]

I am a recovering Alcoholic so when I am staggering around I get the “o he is back on the sauce again looks”  if there was no nausea it would be fun. A bit of a rush with the butterflies in the tummy and all lol!

I found it very frustrating and annoying when trying to explain the different symptoms of dizziness/vertigo because the doctors would keep saying that is vertigo or dizziness despite the fact that I was experiencing two different sets of symptoms and to me they were two separate issues.
I am due for a table tilt test over the coming months so this may shed some more light on things.
ROD

[shanmomof3]

Thank You! I'm SO glad somebody put this into words! I tried to explain it to a friend (who's a nurse practioner) the other day but couldn't get them to understand the difference. There are times the vertigo gets so bad I have to sleep in a chair because if I lay down the spinning gets worse!

Yes, my tinnitus gets worse then as well.  I also noticed that the worse the nausea gets the worse the tinnitus gets!

Elizabeth, I agree I'd rather have the dizzyness but if you find that miracle where we can choose which symptoms we want... LET ME KNOW! LOL!!!!!

--Shannon

[jorlex137]

Sometimes people look at me funny and say "are you okay" and I just reply and say I'm enjoying my natural drunk/high I'm having....I go into that extreme light head headed sensation feeling where I feel like I"m floating!  
I've learned to enjoy the "ride"
You can keep that dizzy **** though!  

[rod44]

You would not get me up there now not even 40 or 50 mm now and i would freeze.
I also notice that the tinnitus gets worse as well during the vertigo.
R  

[n40066]

lol!  ray, you couldn't PAY me enough to be 40 or 50 ft. off the ground when i have vertigo!

[rod44]

Hi Elizabeth,
The vertigo is bad when it happens especially if your 40 or 50 foot above the ground!
I was also involved in an RTA a few months after it started, the police thought I was drunk (told them they were a few years to late lol!!)
The dizziness is a nuisance because I feel so insecure walking ect and some times fear going out, mostly the embarrassment of falling.
ray

[n40066]

my experiences with vertigo and dizzyness are identical to yours, ray.  personally, i'll take the drunk/dream like state to the vertigo any day!!  lol....like we get to choose, right?

[jorlex137]

I know I should not, but I do at a minimum, if I do not drive I do not work.  Thanks, I'm going to call and see if they can give me something till my next appointment.

[rod44]

I agree with Selma, do not drive with vertigo.

[selmaS]

I was also given antivert......it may help, but depending on how often and how bad an episode u have u should not drive....I also do not drive....I am hoping to be able to drive after my next post op dr visit.

"selma"