Who else is Dizzy 24/7?

New discussion on all things to do with Vestibular Migraine (VM) and Meniere's disease (MM).

Who else is Dizzy 24/7?

Postby Taavinen on 18 Dec 2011, 08:13

As the title suggests, who else is dizzy 24/7? How long have you been constantly dizzy for? I assume numerous people have this problem. I have been constantly dizzy since i became unwell in July. This initially appeared to be Labyrinthitis which responded to oral corticosteroids which resolved most of my symptoms. As time went on though, it no longer responds to oral steroids which appears to be the shift in Dx.
I have read a far amount of journal articles and pondered on the reasons from my training. One would think that part of the reason my dizziness has not settled has been due to irriversible damaged caused by vasospasm and constriction of blood supply either directly to my vestibular system, or to the 8th cranial. However, i have read stories on here where people's dizziness has settled after what would be a long period of dizziness from avoiding triggers and the right medication.

All thoughts and hands on experience are greatly appreciated
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Re: Who else is Dizzy 24/7?

Postby opus2828 on 18 Dec 2011, 08:31

I have it everyday for the past 2.5 months. I get a spinning feeling - where I am spinning - not the room, although it started off that way. Some days my symptoms are less and more manageable and other days are just awful.

I am still trying to find a pattern, if there is one. I don't know if it's worse with my cycle, stress, food. I have been on the migraine diet for about 1.5 months.

I tried Nortrip with bad side effects so had to stop.

I am now considering Pizotifen as many have had success with it and there doesn't seem to be any serious side effects.

But, yes it has been everyday!!! Oh joy!!!

Julie
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Re: Who else is Dizzy 24/7?

Postby elishat27 on 18 Dec 2011, 11:20

I have had "rocking" vertigo every minute of every day since May. I've tried several meds, verpamil has helped about 50% on a good day. I also have daily headaches.
MAV since April 2011. Symptoms include: daily "rocking" and imbalance, 5-7 chronic headaches per month and moderate headaches almost daily.
Currents meds: Topamax 50mg's, Zoloft 50mg's, and valium when needed.
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Re: Who else is Dizzy 24/7?

Postby mommyrebecca919 on 18 Dec 2011, 12:19

I was dizzy 24/7 before medication. I am currently on 2 meds and just started celexa a couple days ago, so I guess you can say 3 now. I tried a few meds before these without success then got on Depakote and got much better. I have always felt in a fog most of the time, sort of like an off feeling in my head, like I was on the verge of passing out every minute but it would never happen. This whole thing kicked off with vertigo though, that left me like this. Now when Im dizzy eating, sitting down for a while or taking it easy makes it go away usually. Im rarely dizzy though, Hoping the celexa helps even more.
Got dizzy 6/2011, two months after having my 3rd child. First diagnosed with labyrnthitus, after not getting better was diagnosed w/ MAV end of 7/2011. Meds are Depakote ER 500mg, Verapamil ER 240 mg, Celexa 30mg
Symptoms very well manged through meds.
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Re: Who else is Dizzy 24/7?

Postby Taavinen on 18 Dec 2011, 20:50

Thanks so much for the replies :) It is great to understand what other people are experiencing to put it all in perspective :)
Anyone else?
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Re: Who else is Dizzy 24/7?

Postby rockyksmom on 19 Dec 2011, 03:44

My dizzy symptoms were 24/7, and would be the same if not for meds. I felt more off balance and kind of "high"...not truly spinning. (although I did have 2 true vertigo episodes about 6 years before all this came on 24/7).
Kelley
Dizziness started in 2009 after a bout with a viral infection. Diagnosed with MAV. Currently controlled with Cymbalta 50mg, Klonopin .25, and phenergan at 10mg nightly.
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Re: Who else is Dizzy 24/7?

Postby Deethedizzy on 19 Dec 2011, 06:40

Hiya
I am dizzy 24/7 (though have seen a great improvement with diet to about 80-90% ok) and my 'MAV' started off as 'labyrinthitis' Looking back i now feel that it was the MAV all along. I find if i take ibuprofen it helps and the steriods may have had a similar affect on you until the MAV got worse maybe?
I hope you manage to find some relief soon
Dee
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Re: Who else is Dizzy 24/7?

Postby ilovesalem on 19 Dec 2011, 06:52

pre 9/2010 i would have mav dizzy attacks 4-6 times a year and would attribute it to diet, stress, seasons and lack of sleep. they would be true vertigo attacks but would last for 30 minutes and slowly go away.

after having my 2nd child, 2 days later i woke up with the room spinning SO fast it was the scariest jolt of my life. it has since slowed down but hasn't ever stopped. 1 year later, i am rocky 24/7 and it's horrible. still not sure what happened to me in that hospital room a year ago and why my mav is different now, but i feel like i am drunk, when i lay down on my side i feel like i am rolling down a hill and the only relief i get is when i am in a car and when i am asleep. i've been to the beach a few times and i've forced myself to stare at the horizon and it's like my eyes/brain won't let me- it's so bizarre. it's like my brain always wants to keep jolting.

2 inner ear doctors say my ear is clear, my nuerologist said my brain is clear and now thinks it's damage from a possible vn injury, i've been to vrt but the specialist said she didn't think i suffered from vn and wasn't benefiting from vrt, i don't know what the heck to think and just want answers. i'm thankful all my testing is clear but at least would like something wrong to know what is wrong :)

topamax has been good at keeping the true vertigo attacks away, but would like something to ease this bad rockiness feeling. on a scale of 1-10 it's a 8.

i am open to try new drugs but of waiting for my new insurance to switch over and try to options. it's comforting to know i'm not the only one constantly moving all the time :(
Suffered from "vertigo spells" since I was 10. Had my 2nd baby 9/10 and BAM! The vertigo hit and now rocky 24/7...diagnosed with MAV, spontaneous Mal de debarquement syndrome and Lyme Disease. Treatment-Topamax 75mg- has helped with mav attacks
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Re: Who else is Dizzy 24/7?

Postby Taavinen on 19 Dec 2011, 19:23

Thanks for all the responses!
That is interesting Rebecca that your perpetual dizziness settled once you had the right combination of medications. That is a very high dose of Verapamil. I assume you don’t get any hypotension on such a high dose? I am in the process of going up to 360mg of Verapamil, though it really binds me up and need extra fibre!

Yes Kelly, that is sort of how I feel most of the time. Very off balance and sort of drunk.

Dee if you have something that is a trigger how long until it exacerbates your dizziness?

Ilovesalem, I really feel for you :( It sounds like your constant symptoms are worse than mine. Did your balance testing reveal any vestibular weakness?
I am interested about the Topamax stopping your true vertigo. I am keen to try Topamax, but need to initially wait otherwise I won’t know what is working and what isn’t. I have found that the tricyclic really helps settle my baseline symptoms. When I tried to decrease off it, my constant dizziness got a lot worse
My thoughts are with you :)
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Re: Who else is Dizzy 24/7?

Postby beechleaf on 19 Dec 2011, 19:41

Hi,

I also had 24/7 dizziness at one point, but this settled down once I was on the right medication (pizotifen).
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Re: Who else is Dizzy 24/7?

Postby Taavinen on 19 Dec 2011, 19:44

Thanks Beechleaf. Glad to hear you found something that settled it down for you :)
I wonder if verapamil by itself has helps to settle the 24/7 dizziness for anyone?
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Re: Who else is Dizzy 24/7?

Postby opus2828 on 19 Dec 2011, 22:50

There is a lady, her name is Nance. She had huge success with just Verapamil. Look her up. I was considering this med and sent her a PM and she told me all about her story. Very nice lady!!!


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Re: Who else is Dizzy 24/7?

Postby TeeCee on 20 Dec 2011, 00:04

Hi Taavinen,
I've been dizzy 24/7 since Sep 2008, so just about 3 1/4 years now (but thankfully no proper vertigo, other than the two split second violent spins that kicked this whole thing off). I've been on the migraine diet pretty strictly since June 2009, so for about 2 1/2 years (the diet has just become a way of life, really).

Pizotifen was superb for me, stopping the daily dizziness almost completely, but for certain reasons I came off it prematurely and when I later returned to it, it didn't work quite as well the second time around (something I still massively regret). So now I've been on Topamax, and am trying to find my ideal dosage (if it exists). I've also seen a new consultant recently, and he's just added Gabapentin to the mix...
Tony.
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Re: Who else is Dizzy 24/7?

Postby Taavinen on 20 Dec 2011, 06:17

Thanks Julie and Tony :)
I am on the verapamil and slowly working my way up. I am also on prothiaden and now the Cinnzarizine. Would really like to try the Topamax or Pizotifen, but need to ony play with one med at a time so i know what is working. Just want to try them all asap! LOL
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Re: Who else is Dizzy 24/7?

Postby opus2828 on 20 Dec 2011, 07:57

I know what you mean about wanting to try them all. But, I've come to the conclusion that this requires patience and time and it's really hard. It's a feeling that you just want gone - yesterday.
I hope your meds work for you!




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