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

[chadry]

Have you ever had any vestibular testing done? This can help determine if it is Chiari related. Sometimes.
My daughter had the testing done and everything came back normal but she gets vertigo and or dizziness. It is hard to say which one it is but really when you are feeling that way what is the difference. Something is spinning.
I do not have CM but i do get bouts of vertigo. I had it so bad one time I fell down in the hallway. I thought I was having a stroke or something. It eased up somewhat but stayed with me for weeks.
I have DDD in my neck and my neck had been acting up at that time. I still believe it had something to do with that because I will get it every now and then for no reason but I find my neck is usually bothering me at the time.
I know when I have it, it is usually worse when I turn my head to a certain side. I heard you have to retrain yourself by focusing on an object while you are spinning. It seems to help. YO have to keep your eyes on one spot until it settles down. It takes a while but it does get better. For me anyway.
Do you get sick to your stomach during all this. My daughter had it so bad a few times she actually threw up. I never did but I sure thought I was going to. My doctor gave me medication for it like a motion sickness tablet but it made me very itchy so I only took it once. My husband said he had the same reaction to motion sickness pills one time when he took them for a boat ride.
Vertigo is such a horrible feeling to deal with.It is funny because every morning when When I wake up now I sit on the side of my bed to see if I am going to spin or not. I have not had it in awhile but i still check every morning. I do not want to fall down again like i did before when I got out of bed. It was so scary.
Chadry

[selmaS]

Hi ROD.....yes I had it too....one episode of vertigo lasted 2 weeks.

Like u I had both...dizziness...if I bent down to get something and got up too fast or turned my head I got dizzy....it would come and go...but the vertigo......when I would get that it seemed to bother me if I turned to my left....or slept on my left side...but it felt like I was on a boat and everything was moving and I got nauseos...till I vomited.

There is a distinct difference btwn the 2.

"selma"

[rod44]

Thanks chadry,
I had a VNG test that came back abnormal, they could not do the part of the test where the manipulate your neck for cervical vertigo  because of fears of increasing the size of the syrinx. The Nystagmus is there without vertigo witch caused confusion.
The ENT doctor feels it is central or vestibular vertigo related to the CM or the Syrinx.
There is a family history of RA and I have this in my right Knee but there is no mention of RA in my neck.
I was with a NL a few weeks ago and she said BPV, the ENT say they don’t think so but cant do the Dix-Hallpike maneuver because of the syrinx.
I am due to see a NS in November so I will see what he says.
ROD  

[jorlex137]

I'm all new to the Chiari but I know I'm not new to the symptoms of it all as I"ve been dealing with it for MANY years!  Even had brain surgery to get rid of it, but unfortunately it was the wrong surgery!  

The vertigo and dizziness is what I just can't take anymore and drove me to call them again and be more persistent see what is wrong.  That was when Chiari was found.  

I often feel like I'm a rocking boat and I have to hang on, I literally feel like I'm moving!  I have had to pull over my car before because the blurriness has gotten so bad I can't see to drive.  My vision gets so bad it's like a screen that someone is moving back and forth.  I hate it!  

That is my story to share on dizziness.  

[rod44]

Thanks Selma,
I do get the nausea/sick as well.
I have been on meds for vertigo Serc and Antivert but they don’t help much with the vertigo. Good for the nausea though.
I feel there is a world of a difference between the two as I experience them.
ROD

[jorlex137]

I don't want to hijack your thread, but is there a med I can ask for to get me through for a while to help me with driving with the dizzy spells and rocking boat sensation?

[rod44]

no problem hijack away,
Serc 16mg, Valium 5mg and antivert 500mg are what I take but I am not allowed to drive.
ROD

[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"

[rod44]

I agree with Selma, do not drive with vertigo.

[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.

[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?

[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]

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

[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  

[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!  

[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

[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

[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]

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]

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,
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]

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]

That would be supper thanks Selma.