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Old 02-10-2003, 10:05 AM   #31
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Hello Sasha,

I know how you feel. I've been dizzy for nearly 1 1/2 years now and I don't feel I'm any closer to being better. I have better period than others but I get very dissapointed when I go back down, like right now. Only very recently a doctor diagnosed me with L. It started so gradually that no doctor diagnosed me with L. I tried many things, accupuncture, severe diet, etc. so far, like you, nothing has worked.

I know that a lot of people get anxiety with the dizziness. A lot of doctors blames the dizziness on anxiety and not the other way around. I went through all that with my doctor. I even saw a psychiatrist to prove her wrong. But I know that if I get a new symptom (feel more dizzy) I feel the panic and anxiety. I'm always afraid of it getting worse. Is your fear going shopping due to your dizziness or your anxiety and panic attacks. If it is because of your anxiety do something about it right now. Read about it, talk to your doctor about it. I know what anxiety is, I had it in the past. I took control over it very fast by learning about it. It gets to a point that it is the fear of the fear itself. I hardly have any anxiety anymore, I will always be prone to it, but I learned how to control it.



[This message has been edited by MPaiement (edited 02-17-2003).]

 
Old 02-10-2003, 12:56 PM   #32
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Hi,
Thanks for that. I don't go out really because of the dizziness. My main thing is that if I get too dizzy, I'm afraid I'd pass out.The likelyhood of it actually happening is virtually nil, but try telling me that when I'm out!!! I force myself to do it though, or i'll end up staying in forever. My doctor diagnosed this about 2 years ago, but in reality, I've had it for about 3 and a half years. Nobody knew what it was until i changed doctors. Hopefully one day this will go and I won't even realise it's gone!!
It's just very annoying. I used to be so independent, now I'm not allowed to drive, unable to work and dependent on my boyfriend,who by the way, is a godsend!
Anyway, must dash.
Bye all.

 
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Old 02-10-2003, 01:17 PM   #33
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Has your ENT said it is Ok/normal to last this long?

 
Old 02-10-2003, 01:43 PM   #34
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They weren't much help!!! All they said was yes, it's labyrinthitus, nothing more we can do. My doctor says it's ok though, i see her every month.

 
Old 02-15-2003, 05:19 PM   #35
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sorry Jenn...no success story here..;( Ive been dizzy for almost 3 yrs...I was dizzy free for 2 months..Oct/nov..& thought this is great!...Maybe the Celexa was all I needed?...WRONG!
Its back & worse,,Ive had hearing tests..c scans. 3 MRI's. Ive seen an ENT & a Neurologist,,he said I had an Inner ear problem,,,,duh! BUT,,,why cant they put a name to it??
Im so fed up...now im getting dizzy at the malls, supermarket,,when I walk its like Im on a suspended bridge,,& its being shaken..kinda wobbly on my feet,,,it never lasts long,,,I dont vomit,,,but am VERY nauseated.
I have a "fullness in my left ear, then it rings,,& fizzes. It happens at home alot, it is set off (i think),,by visual stimuli..& im thinking a change in positions.
Last week I had my third MRI,,,b/c the last 2 were "inconclusive"...huh???

I am on the cancelation waiting list to see my neurologist...I hope I can get some answers. In the meantime,,,Its somewhat comforting to know im not alone in this dizzy nitemare...
~~Hang in there

 
Old 02-17-2003, 08:19 AM   #36
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Sasha, You said you've had L for the past 31/2 years. Have your symptoms always stayed about the same or are they getting better or worse.

I know what you mean when you say that you were independent and that you now have to depend on your boyfriend. I had to quit my job. We have three children, and this situation is putting a lot of strain on us financially. I feel so guilty and inadequate. I feel like I'm in a straight jacket, I feel so powerless. I get soooo angry. I WANT MY OLD LIFE BACK!!!

 
Old 02-17-2003, 12:17 PM   #37
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Hey Mpaiment,

Hope I don't sound like I'm butting my nose in, but wondered if there is any history of migraine at all in your family? I know I have mentioned this before, and I only mention it now again because before finding this site I used to go to another dizzy site a lot. The people on it mostly tend to have been dizzy for a year or more. On there, there was a woman called Hannah. The reason why I ask is because she was dizzy 24/7 for around the same length of time as you. She also had no specific ear symptoms. Other people on the site also have it who are also dizzy 24/7. I push this point because with the right medication MAV can be alleviated. Hannah got totally better once she found the right meds. Basically, when you have unrelenting dizziness for a long time, with no hearing loss, or major ear symptoms, then it can be MAV. You don't always have to have a family history of migraine, but it's one indicator. Another indicator if you have been dizzy for a long time is the ENG and caloric test. Generally if it isn't MAV but l'tis or VN related it will probably (although not always) show up some damage to your vestibular nerves. I can't remember if you had a virus prior to getting dizzy, also another sign that it's more likely to be VN.

Sorry if I sound like I am strangely banging on about this. It's just I read your most recent mail, you've been unrelentingly dizzy so long, which must be so frustrating, so I thought if there was any info I have that might help you get your old un dizzy life back, I ought to put it out there. Also I remember you saying you are going to a dizzy clinic soon - sometimes it helps, as you know, to be armed with info and suggestions before you arrive. Big apologies if you know all about this already - I know like all of us you trawl the net looking for info - so you may be totally informed about this anyway.
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Old 02-17-2003, 03:15 PM   #38
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Hi Hbep
What does MAV stand for?

 
Old 02-17-2003, 05:03 PM   #39
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Hi Jen

MAV is migraine assisted vertigo

MAD is migraine assisted dizziness.
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Old 02-18-2003, 01:33 AM   #40
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Mpaiement,
Since I've had L.tus it has basically been the same. A few good days here and there. If I stay in the house (which isn't a good thing, I know!!), it's not so bad because everything is familiar I suppose. I know what you mean on the financial side of things too. If I was able to work, our problems would be sorted and then I get very angry with myself, but luckily as I said before, my boyfriend is brilliant about it. Unfortunately, the longer I have L.tus, the worse my anxiety gets. It's a catch 22 situation. We've (the professionals and myself) have come to the conclusion that when the L.tus goes away so will the anxiety hopefully!
Anyway bye all.

 
Old 02-18-2003, 07:58 AM   #41
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hbep, I don't mind you butting your nose. That's why I'm here. mmmmmm, never thought about MAD. You said the other person "Hannah" didn't have any other symptoms than dizziness 24/7?

There is no history of migraine in my family. I didn't get a virus or cold before starting to feel dizzy and all my tests were normal, including ENG. Wouldn't an MRI show signs of MAD?


 
Old 02-19-2003, 05:31 AM   #42
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Mpaiement

Hello again. Not sure about the MRI - as far as I remember I don't think it necessarily would show. I've dropped a quick line to the people I know with this on the other site, asked them what symptoms/factors other than the ones I've mentioned might indicate MAV. Hopefully they will post me an answer. Thought it would be useful not just for you but anyone else reading who may have as yet unexplained dizziness. I guess the other possiblity for you is what they call uncompensated vestibular neuritis/labyrinthitis. For some reason it takes some people's brains a long, long time to compensate for the trauma the original virus has caused. If this is the case then the correct vestibular rehab exercises for you will undoubtedly help, especially if you are showing some signs of recovery and your ENG showed no damage.

Whilst trawling around I read a really heartening thing. It was posted by a balance/dizzy specialist who runs a vestibular rehab clinic. He said in most cases it was possible to find a solution for people who have the dizzies. He said people remain dizzy for a number of reasons - not getting the right help/seeing the right specialists. He has spoken before about how important it is to see super specialists in this field when someone has a long term dizzy problem as opposed to just general ENT docs, which is why it's great you are finally getting to go this clinic in April. The other reasons he quoted are agrophobia/depression/anxiety - I think you're pretty clear those aren't the cause of your problem. He also mentioned people who have other serious health issues alongside their dizziness, which makes it harder to treat the dizzies -that doesn't sound like you either.

I guess what I'm saying is there's a really good chance that with the right help you will beat this thing. I know how important it's been for me going through this to be able to believe that's a possibility.
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Old 02-19-2003, 06:05 AM   #43
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Hbep, thank you VERY much for your words of encouragment. They mean a lot.

Let's hope that the clinic will finally be able to give me some answers and help me.

 
Old 02-19-2003, 08:31 PM   #44
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Hi Hbep
Your words encourged me too! I went to see a Vestibular therapist last month and have been doing my exercises religiously 3 times a day. She is the only therapist in the whole of Australia (I had to fly from Melbourne to Adelaide to see her) so I hope she is on the right track. Her opinion of my dizziness is that it is uncompensated vestibular neuritis. I have absolutely no other symptoms other than dizziness and never have had. I am in month 6 now and I suppose if I look back over the past 6 months I am definitely better. Of course none of us will be happy with 'better', we want to be cured! She said it would take months for me to get better but to persevere. I have to keep encouraging myself and trying to stay positive. Hang in there Mpaiement. I think you're on the right track now with the therapist.

By the way, I started to investigate MAV on some websites as I am a migraine and headache sufferer. This stressed me out somewhat and I am going to stick with the vestibular neuritis diagnosis. My gut feel is that it's not migraine related, as my symptoms and history seem to point away from it e.g. I've never felt car sick or seasick etc etc... I've had headaches all my life and they have never intefered with my life even when they are bad. The magic of headaches is that you take some painkillers and they go away! Oh for those days of living with headaches only...
Cheers
Jen

 
Old 02-20-2003, 06:55 AM   #45
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Dear Mpaiement and Jen,

Here's one of the answers I recieved from the other dizzy board - general info from Tom Boisner who runs a balance centre and has had yrs of experience with dizziness.

"The bottom line is that many folks never find out WHY they 'caught' dizziness. At some point they have to move on to the 'what can I do about it' stage. For 24/7 symptoms VRT is often the best approach. If VRT doesn't help, look for and treat interfering factors (headache, anxiety, other medical conditions) then try VRT again. If still no help, consider a good trial (at least 3 months) of migraine preventative medications."

Thomas E. Boismier, MPH
Director of the Balance Care Center.

It seems Jen that your therapist is on the right track as you're improving with the VRT exercises. As you've said she's very experienced and I'm sure she knows what she's doing. I'm pretty sure it's not unusual to have uncompensated VN and for there to be no connection to migraine attacks. I think MAV would only become relevant for you if the VRT didn't clear things up.

MPaiement - it seems that you should have been given the right VRT exercises to do. It's so scandalous how uninformed ENT departments are - how many people's suffering do they prolong by not handing out the right treatment a.s.a.p. Fantastic that you are off to this clinic in April, I'm sure this will set you on the road to recovery.

For anyone who is considering a MAV diagnosis I picked up a bit more info, it seems you can have headaches - migraine or otherwise, but not necessarily. If you do get them they don't have to precede a dizzy attack and can happen after or independently of the dizzy attack. I spoke to one woman who was entirely cured of over a year of 24/7 dizzies with migraine meds. She had, had migraine in her teens, but not since. An ENG can both show damage or not, depending on if the vest migraine has damaged your nerves. The other symptoms you may have, but again not necessarily, that might point to a MAV diagnosis are the usual migraine symptoms that go along with the headaches - visual aura - light/noise sensitivity, numbness, tingling, etc... I guess if anyone thinks this may be relevant to their dizzies they should do a search on migraine symptoms.

I'll shut up about this now - the only reason I thought I'd mention it is because I've read quite a bit about it and ENT docs can be so uninformed and rubbish. The more info people have about dizzy disorders the better chance they have of making doctors look in to every avenue and therefore finding a cure. Dizziness is such a horrible thing, now that I've experienced it I hate the thought of anyone suffering with it due to lack of information.
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