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!

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 :cool:

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!

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!!

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 :cool:

Still kinda wondering about Scotts question... DO you have clear patches??? Both you Lauren and high?

Lauren

I totally relate to how miserable you feel. I have had problems like yours for a number of years and it has totally ruined my life unfortunately.
I tend to have 24/7 dizziness and vertigo, unabating and months and even years at a time. I also have loud tinnitus which never lessens and have had ear blockage and ear pain. I had left 3 jobs in succession because of it and really struggled to get another job in a period where the dizziness was not so bad. 6 weeks before starting the new job it kicked in again and now im a week into it and i know i wont survive.
My life is a mess and no one in my family could ever understand, they just completely mad about it. So, i never mention it to them, apart from ocassionally when they will ask " what happened ?" and i tell them and they even go as far as to say im lieing about it all now !

On clear patches:

As I've recently experienced one, in the middle of what seemed to be another "middle intensity" blip, I can almost assure that this, as I called, "on-off" condition where you can, in the middle of a blip, without pills, medication, VRT, or anything, feel completely normal, and vice-versa, is a clear symptom of MAV or a Migraine condition.

So, Unless some progressive condition like Meniere's is there, where this conditions usually show an identifiable behavior, both in time and symptoms, chances are that MAV is a clear cut factor in the long term patients like us.

Add any other vestibular issue(VN, BPPV) and things get more complicated, for us to bear, and for the brain to fully compensate for.

Even in the best scenario where MAV is there alone, and it's well controlled, with no other vestibular condition present, you might be having occasional blips from time to time, because migraine, by definition is a non fully curable condition.

Obviously with some other condition present, the mixture of symptoms and their intensity are the stuff that get us here to ask for help, many times.

Hope we find out some treatment combination that get us to, at least, feel good most of the time.

I don't know if I ever have completely clear patches.....there are certainly times when I feel better though. Excercise always helps....pretty much when I am in motion I feel better b/c my head is always in motion anyways.
I asked my neurologist about migraine and she said that she doesn't think that is it. I just really hate to be put on a trial of pills to see what works. I get really frightened when taking a pill and what the side effects will be. Silly I know, but the anxiety I already have from dealing with my ear problem is escalated when taking a strange pill.
I really feel for everyone who has been going through this ear problem longer than a year. I just wonder why some tend to get better and others just can't shake it? I guess it's the migraine factor, but really who knows. I am still holding out for that 3 year mark to get better....I have heard that at about 3 years it will die out. Who knows!? I just like having a little light in the dark tunnel of VN. :)

Lauren...I am so sorry you are not feeling well. Do you do vrt exercises?

I know exactly how you feel. My wedding was planned for September last year and we had to cancel it as we just couldn't see me being well enough, that and the fact that I wasn't working so money was a problem.

I know it's hard but you just have to struggle through the bad times and tell yourself it will get better. I'm not cured but when I compare myself today to how I was last year I know that I have drastically improved.

Lou

Hi Lauren, have you considered going to see a neurologist. You've had this too long without any significant improvement. Maybe a migraine is planning a part or your dizziness. You never know, you need to get your life back.

Cathy

Hi Lauren,

I totally understand how you feel. I just wanted to pop in and give you a hug. I was hoping the wedding planning would take your mind off this some. I'm sorry.

Have you noticed any improvement over the years? I know it is such a bummer as I can relate to what you are saying 100%. I get tired of it all too and it is hard to watch everyone else around you living normally when you feel stuck in this warped world. I have seen improvement although it isn't where I wish I were yet. What I did was take a peice of paper and write down what my symptoms were at the start and what they are now. It is easier to see small steps made when you have it written out. It may just make you feel a little better seeing that some improvement has been made.

I have also found that doing what I enjoy and is possible makes me happier than doing what others want. I know it sounds selfish but you need to concentrate on YOU right now. I find that I enjoy going to the movies (I can sit back and relax and I don't hear my tinnitus too much). When I do things other want to do like going to the beach this past week, I feel more stressed to try and feel normal and do normal physical activity. I watch others who seem to be living normally with no care and feel sad for myself. I enjoy taking a walk with my son as I don't have to worry about carrying on a sophisticated conversation with a 6 year old and I am not trying to keep up with another mom. Get my point? Do what is relaxing for you. It really helps some of the stress. I know it is hard at times because we have to do things we don't want, but my point is, take time to do what you want even if it is just sitting on the couch watching a funny show.

How is your tinnitus? Any better these day? Mine is still the thorn in my side. That gritty feeling you described previously goes hand in hand with my tinnitus. So what ever is causing that in my head is making the noise.

Also, remember, it wasn't until I was at about your point in time that I finally found a good neurologist who seemed to tell me exactly what I thought all along was my problem. I'm still not 100% sure what was exactly injurred but I do know that some of the stress of guessing what was going on is better.

A few more questions, did you have migraine before this problem? I can't remember if I asked you this as well previously, but did yours start after a virus or some specific event. I can't help thinking your symptoms are really similar to mine despite the floaters and my neuro said he has seen this happen in people many times before after viruses. I somehow, don't think the inner ear is involved at all even though we have these inner ear symptoms (that comes from someone who even had a severe ear infection just prior to this junk). Did you ever get moving or spinning vertigo or is it always just a dizzy off feeling? My neuro likened my brain trauma to someone that was in a car accident. I did a little research and found head traumas cause a lot of auditory symptoms (could be a little BPPV, I suppose).

I hope you have better days ahead soon. I'm thinking of you and always wishing everyone wellness.

:angel: Gloria

Hi Gloria and everyone!
I just wanted to thank everyone for their replies, and just know that it always helps me so much when I am completely down with this inner ear junk that I can turn to these boards where everyone understands what I am feeling and dealing with.

Um Charlotte to answer your question about VRT's..I did them everyday for 2 years, and I am not sure if they helped or not....I think that the movement did help clear my head sometimes though. I only do them every now and then these days.

Gloria....thank you so much for all of your helpful advice. I have been feeling a lot better since I wrote that last post. I have taken care of more wedding stuff with the help of my mother and finally got my dress...which I absolutely LOVE. When I am feeling really bad with this ear junk I start to freak out about the wedding and wonder how am I ever going to get through it feeling bad......but I tell myself everytime I feel bad, that this will pass and just to get through it. I always like to remember the quote "and this too shall pass", helps you get though anything....illness, break ups, sadness, depression. :)

I still have my tinnitus, but I think that I have just gotten used to it and don't think about it as much.....everynow and then one ear will ring loudly out of nowhere and it startels me...but then it quickly goes away. I am SO sorry that yours is so bad......it will get better....I think everything will start to quiet down with time. A college friend of mine that I ran into the other day said that her mother had and inner ear problem and it lasted about 3 years.....so I am still holding out for that! ;)

I am trying to remember all of your questions for me.....ummm I never had migraines or really any headaches before this, so it is such a mystery. I am guesing that it started from a virus. I remember getting really sick in Oct. 04 and then having to go to work b/c everyone else was out at a convention and I had to go take care of things b/c no one else was in the office, otherwise I would have stayed home and rested....so maybe that pushed my body over the limit. After that I think that I started having problems with dizziness every now and then....like I would notice it towards the end of the day....and I remember having to walk out of an aerobics class b/c I was so dizzy and thought I was going to faint. However...I remember the exact day that it hit though (5/20/05)....I had left work early and gone to interview for another job, and in the interview I remember feeling really spacey and weird....and when I left I was just like...oh I blew that, b/c I didn't know what was happening and I am sure it read on my face. After that I had a friend in town for her bachelorette party....so we started drinking that night...which masked the feelings of my dizziness, so the next day BAM it hit me......I was at her parents house for a little party that afternoon and I felt like I was on drugs...that surreal feeling like you are not really there....I have never felt that feeling before in my life....I couldn't concentrate and was trying to hold it together on the outside in front of a bunch of family members and people I didn't know. Ughhhhh I will never forget that day. Anyways....sorry to go off on a tangent.....but ever since then I have been permanently dizzy. I have been to every doctor and specialist in my area...and even to the Mayo clinic in Arizona where they check you out for everything. and that is my story! I do have to say that I am better off from when I first got this.....don't know if I am just handeling things better or have gotten used to it. I do know that it is not gone though, b/c I could tell if I had a clear head.

Anyhoo.....I hope that everyone is having a better day!

Hey Lauren

hang in there hon! I know how you are feeling, I'm in the very same place. I've had this **** for over 4 years now and I cannot shift it. I've become a very different person from teh person I was and feel sorry for my husband one year married and I'm like this insane mad woman he he... funnily enough mine all got worse after the wedding. Must have been all the stress and tension . I've been having a major relapse for these last five weeks, dizzy constantly, ear blocked, ear pain, numbness on my face and then unable to sleep. I know how you feel there is noone where I live who really understands this. Glad we got these forums hey but it is frustrating that you do all yo ucan and and still nothing shifts it! sending big wishes and hugs to you..xx

Hi Lauren,

I'm glad your mood has picked up. Sometimes I feel like I'm on a roller coaster of emotions. Congratulations on your dress. I'm sure it is beautiful.

I know some may get upset for me saying this but my research tells me my theory is more relevant to what has happened in some of our heads. I do believe there can be a migraine factor in some of the cases and found the Heal Your Headache very informative, but I do not buy the migraine theory in some cases. This thought was all confirmed when I finally found a very good neurologist who seems to know what the heck he is talking about and who I thought was very sensative to my feelings. (It took me 2 1/2 years to find this doctor so I know how it is to see countless numbers of erragant, useless doctors.) What the neurologist told me confirms what I have researced.

Anyway, I can't help thinking that what is going on in your head has to be similar to me especially considering you never had a migrain problem prior to this and you did have a bad virus. I never had a migraine in my life and very rarely a headache.

It would all make sense that your problems started weeks perhaps after your initial virus. Symptoms of trauma to the brain occur up to six weeks after the injury. The biggest symptoms of traumatic brain injury (TBI with or without trauma) are dizziness/spaciness, emotional disturbances, headaches (actually are called post-traumatic headaches), fullness feeling, vision disturbances and autitory problems (has to be where the tinnitus came from). Autitory problems are found in every patient no matter the cause of their injury (menegitis, flu, or a car accident).

The prognosis I was given and what I found in others I researched on the internet was 2 - 5 years, 5 years being the full or almost full recovery time. I know of an individual who had a lot of our symptoms who recovered fully after 5 years.

What to do to better yourself:

This is what my research indicates and what the my neuroligist told me:

-time is on yourside
-eat small meals thoughout the day in order to keep your nervous systems steady
-It is very important to stay hydrated to keep all your brain tissues moist (40 - 60 ounces of water a day)
-500 mg of magnesium a day has shown to be very beneficial
-Walking 2 miles a day is very important (just at a normal pace)
-Sleeping the same pattern every day not to disturb your CNS
-relaxation practices daily (what ever relaxes you, breathing exercises, day dreaming, listening to quiet soft music)

The goal is to desensitize your nervous system to get it on track and then the bigger healing begins.

I am not disputing anyone elses information on this board, but I'm not so sure some of our cases are even inner ear related (labs/vn). Hbep once said the board should be for dizziness not necessiarly inner ear and I agree with her. I think everyone has done very good research for all the possiblilities of dizzy causes. I really do believe Lauren that your case is very like mine and that that virus prior to the start of your problems is the key in your case.

Keep going Lauren. Seeing that you have improved in 2 years is a good sign of recovery. I too have experienced a gradual improvement over time. I think the fact that you were willing to start planning your wedding is the biggest indicator of improvement. We have a tendency to not see it so easily as we don't feel well every day and it has been so long in our condition.

Good luck and keep me posted on your progress as well as your wedding.

Hugs,
Gloria

Thank you so much Gloria! I have been feeling much more positive lately....and your posts definately have something to do with it. I have to agree with many of your theories and I am having trouble beleiving that my problems are all stemming from a migraine.
I am just staying true to doing what is best for me and time will heal all.