tired of this :( - Inner Ear Disorders Message Board

Lauren29 · 07-28-2007, 07:00 PM

I feel miserable lately....like I am losing it. It's like my mind can't handle feeling this for another day. I am trying to plan my wedding for this fall and want to have fun doing it, but the dizziness is sure making it hard. I have had this for 2 years and 2 months and I honestly feel like I am going to be this way forever. I don't even remember what it feels like anymore to have a clear head. I am just so sad and feel like a different person. I really wish that there was a dizzy therapy group for me (to go to in person).....friends and family just have no idea. Sorry for the downer email. I just really could use some support. thanks!

studyin · 07-28-2007, 07:06 PM

Hi Lauren,

Sorry to hear you are feeling so lousy still. And what a bummer that you have to feel so lousy planning your wedding. Can you remind me what your dx was? Do you think they got it right? What other symptoms are hanging around besides feeling dizzy? Have you had any clear patches?

Hang in there ... Scott

Lauren29 · 07-28-2007, 07:41 PM

Thanks Scott. I think that I am mainly going through a rough patch.....sometimes I just get so overwhelmed with the fact that it has been so long since I have felt normal. I was diagnosed with vestibular neuritis at the Mayo clinic in Arizona. My symptoms are just that feeling of movement in my head and it just feels foggy and buzzing. I have static vision and floaters, but that I can live with.....just the feeling of never having a clear head has begun to take it's toll on me. I have been doing all of this wedding stuff with my mother which also adds to the stress.
I just want to feel better and live my life again.
This is probably just a down period and it will pass and I will start dealing better again. I just needed someone to talk to about the frustration of dealing with a chronic illness that I just can't seem to shake no matter what I do. Thanks again for the response!

highdesert71 · 07-28-2007, 08:16 PM

Hi Lauren,
I am right there with you. I mean that. I have had this 24/7 for 2.5 years now, and I am also pregnant right now, and have a 5 year old daughter - making it 10 times harder physically and emotionally. I have not had a clear head in ages, and I forgot what that feels like. Some days, I get very depressed about it, and it's all I can do to cry myself to sleep... wondering if my head will ever feel normal - without the 24/7 dizziness, drugged feeling, ringing in my ears, visual junk, and all the other vestibular symptoms. Then top that off with healthy family and friends having no clue what we go through. My mother thought I no longer had dizziness - which she just assumed, since I never talk about it around her.... and she was shocked to learn that I still feel just as miserable - but just don't say anything...because it's pointless. I have faith that one day... we will have clear heads again. I know it will happen. Just do the best you can. Hang in there with all of us here on this board!!

studyin · 07-28-2007, 08:58 PM

Hi Lauren,

My thinking lately is that if someone still has this years down the track that it can only be a problem with compensation or that there is some other neurological problem going on that keeps some of us stuck in a never-ending cycle. Have you attempted VRT in the way that Balance Chicago mentioned? If you have hit that without fail for a good 6 weeks without any positive change, and your vision is OK (ie, you don't need glasses as in Subs' case) could there be a migraine component to it do you think - namely vestibular migraine - which could be there with or without headache? Might be way off the mark but you have to leave all options open with this garbage until you hit the nail on the head. Some points by Dr Rauch (neurotologist from Harvard) ... maybe it applies to you, maybe not:

Adult-onset motion sickness IS migraine (until proven otherwise). Hyperacusis, disabling tinnitus, and MDD are FAR more common in migraineurs. Some of us are suspicious that irritable bowel syndrome, fibromyalgia, and maybe even chronic fatigue syndrome could be manifestations of migraine (or at least share some mechanistic CNS features with migraine).

Even if migraine is not the primary cause of some patients' symptoms, it causes intensification of symptoms to the point that the migraine inhibits treatment of the primary problem. Migrainuers are the only patients who get worse in vestibular rehab physiotherapy - and can be considered diagnostic of migraine: If a patient tried VRT but quit after 1 or 2 sessions they're almost certainly a migraineur. Migraine trumps every other dizzy diagnosis. Until migraine is controlled, the uncompensated vestibular neuritis, intractable BPPV, or Meniere's syndrome is extremely difficult to treat.

Best ... Scott