A few weeks ago I saw Pirates of the Carribean in the theater. I ate a nice big bucket of salty popcorn (my downfall)and watched a lot of action and movement on the screen. I felt fairly well before we went to the movie. Oh, the usual minor complaints of buzzyhead, but actually, a good day. After a while, I started to feel lightheaded, almost faint, like my heart started racing, and I was going to pass out. I didn't, and was able to regain my composure, but still felt off and awful. We left the film, and I was sick for the rest of the day. Laying in bed, tired, fatigued, and really off and yucky. Anyone else have this experience? There was a period where I couldn't watch tv or movies because the movement made me sick, but I felt I was past that.

Call me insane, but my family wants to see a movie today. I am going to try it, but I am pretty anxious. I am going to shy away from the popcorn (based on the theory that Meniere's is triggered by high salt, which, however, I haven't really noticed in other incidents), but I am sure I will have a few small handfuls, I love it too much to completely leave it alone as my kids munch away next to me.

Just wanted to share that and see if anyone else has experienced this. Thanks!

Just wanted to say that before you give into a meniers diagnosis, I would definitely get a second opinion. Was this an ENT person or a neurootologist who diagnosed you? If it is indeed meniers do a search on here for the Johns' of Ohio Meniers treatment. Lots of people on this board have had severe vertigo and do not have meniers.

all the best,
Kathy

I agree and am a little doubtful about you having Menieres...all I'd say is get a 2nd opinion....I too get the cinema thing...yucky xxx

Think i have said this before - I have been told that I have bppv and vestibular dysfunction - yet our symtoms seem so similar. Right down to the buzzy head feelings, imbalance and sudden faint feelings when the motion becomes suddenly strong....weird. i am wondering if mine has gone into mienieres or something - although I have asked and they said no. The fainty thing is waht spooks me like you it puts me off too - i find it can come on to if I go for a walk or keep on moving and doing when I feel really gross. I simply find the exagerated sensation of movement and imbalance verging on intolerable. How are you coping with this deal? Oh the faint thing is odd - its like a physical feeling that I may pass out but no other symptoms like the greying out, loss of vision or sound etc. If it happens when walking it very horrid but like you it just passes off. Let me know how u r. Thanks.

Thanks for replying everyone.

We never made it to the movie, it was sold out. Maybe a good thing, but I did go for a run, then spent several minutes lying in the grass with my head spinning (not shocking vertigo, I would call it mild). But it only lasted for that short bit of time, and then I moved on.

In answer to some of your comments and questions, I too, question my diagnosis. Meniere's disease has 4 standard symptoms, I have two of those, possibly a third (hearing loss), but it didn't show on the standard test. So what about those other 1 to 2 symptoms? I did see an ENT, but tomorrow I see a Neuro Oto, so this will be my second opinion.

Ilia, I wonder too about our similar symptoms. I am going to ask about BPPV and vestibular dysfunction tomorrow. I think my ENT ruled that out when I didn't respond to that Dix-Hallpike maneuver. Due to the fact that it took almost three months to be seen by the ENT, my worst symtoms had gone away, so I couldn't "demonstrate" very well for her. My family practitioner saw a great demonstration of my ailments, as I couldn't stand straight to save myself, however, that and a few minor finger-nose touching tests were about the extent of her testing before she referred me on.

Ilia, do you have times when you feel normal? Does the dizziness always trigger when you move your head in certain ways? I guess for me, I feel more obvious dizziness when I am lying down, and turning my head too fast can also trigger it. I haven't had severe vertigo but once, at the onset of all of this. I guess you could characterize my syptoms as a buzzy head, motionsickness, occasional mild vetigo, chronic tinitus, occasional lightheadedness, and frequently, things moves about a half second behind when they should. I agree, these don't sound like all the classic Meniere's symptoms expected from what I have read. But I guess the speculating isn't necessary, I will see someone tomorrow who specializes in the ears, so maybe he will have some better answers.

The toughest thing about Meniere's as a diagnosis is the idea that I would have to live in fear of more severe vertigo attacks at any time, and that I might lose my hearing. The idea that I would have to live with this garbage for the rest of my life is unnerving. I am a 34 year old healthy, active, homeschooling Mom for goodness sake! It doesn't fit into my day to have this nonsense going on! It's hard to find deep meaning as to why we are all afflicted with something so incredibly annoying and unpleasant. It could be worse, I tell myself that every day as I look around at others, stricken with far more debilitating diseases. However, when I am in the midst of my discomfort, that doesn't comfort me all that much. I know you all can relate.

Julianne

Julianne-
Your symptoms sound alot like mine. My ENT dr. told me 100% that I did NOT have menieres and I was so relieved. He has diagnosed me with BPPV even tho's he has not been able to trigger vertigo doing the epley manuever. My vertigo comes when I am laying on my right side. I will feel things spin a bit and then when I turn over they will spin for a few moments then settle down. The worse thing is the panic feeling that comes from the spinning. With menieres the vertigo isn't based on position, it will just come and then after a severe bout of it, you are exhausted and have to sleep. That is one thing that is different with me, cause I can't sleep well when I am feeling dizzy. I feel tense and have waves of anxiety, (had one panic attack). But I haven't had spinning for over a week and not very much altogether really. A balance therapist that I got ahold of in Chicago also believes that I have BPPV and is the one that got me started on balance exercises. She was SO helpful and SO understanding! She has sent me alot of helpful info.
I, too, am a homeschool mom! I am homeschooling my third grade boy and will begin homeschooling my 5 year old next fall with him. It definitely is a challenge to keep up but so far we have done ok! Looking down at his papers has gotten easier in the last month so I know I am improving, oh so slow!
As far as the purpose in it, I am also a Christian, who loves the Lord deeply and know that He loves me with an everlasting love. I have got quiet before him in this hard time and He has taught me so much! He has been absolutely amazing thru this ordeal and I know He will bring me through!
Anyway, hope you are having a good day!
Vicki

Hi Vicki, We definately have some things in common. I too am a Christian, and have done a lot of praying and thinking about all of this, and what it all means. I know we all have to go through hard times in this life. I have been surrounded by other people's miracles lately, but the sorry thing is when I am in the midst of distress I keep asking "why me?" I just slip back there instead of thinking of all of this as a big picture. In church a few weeks ago, they were singing a song I really like (it's a contemporary church) , and have found very uplifting in the past. But all I could do was sob and feel sorry for myself. Then I have moments of real strength, that I know are coming from God.

The homeschooling has been fun, and not too hard. My guys are little, almost 6 and 3. The three year old just hangs around and listens when he feels like it. I feel like God hasn't given me more than I can handle anyway. Our school year started right around the time I started to feel somewhat better, at least so that I could function and do this each day. There was a time when that seemed impossible.

Back to ears. I keep hearing BPPV come up in this board. I haven't had that diagnosis, but have wondered about it myself. I think the problem is that one side doesn't seem any worse or better than the other. I seem to have some dizziness and mild vertigo no matter which way my head is positioned. I know that Dix-Hallpike test didn't show them anything (it was a good day..of course. When you really want to show them your problem you can't get an appointment it seems!), so maybe they felt it wasn't a possibility. But some of the symptoms do sound similar.

That's all.
Julianne

Hi, Julianne! It is so cool that you are also a christian. How long have you been? I have been walking with the Lord for 23 years. I have been married 26 years and have 4 children , 23, 19, 9 and nearly 5. Coming from a difficult childhood God had too do alot of healing in my life. But, He has been faithful to give me a strong desire to know Him and His precious Word! I think it would have been very difficult for me to deal with this illness if I wasn't where I am at this point spiritually. I know God intimately enough and know that His words are true and He is steadfast even tho' life may spin out of control at times (including inner ears http://www.healthboards.com/ubb/smile.gif). I haven't even been able to go to church cause the noise level (we have contemporary also) from the instruments and the commotion (very over-crowded from a fastly growing church) just makes me literally sick. I tried going last Wed. and came home feeling SO bad. It's crazy and hard to understand why I would be in this position, especially at a time when the biggest event our church has ever had is taking place! But, I do know, that God holds me absolutely in His hand. He has lead me to alot of answers and has certainly kept me from despair and depression. He has been so close to me. I just offered myself to Him and said teach me. He has shown me SO much and has certainly enriched my prayer times and my burden for the condition of the church these days in America. Anyway, I am rambling! Sorry!
Just excited to meet another Christian and a homeschool mom! Also, we are considering moving to Colorado Springs. We love the mountains! Do you like it there? How do you do in the altitude? Hope you are having a good day!
Vicki

Hey Julieanne,

Well heck I wondered even about the BPPV diagnosis too - cause I never have periods of feeliong normal - basically I have this to varying degrees 24/7

1. Imbalance - the feeling that my balance is off
2. Intermitent dizzyness - brought on by head cahnge and sometimes not
3. Verigo - the mild type - like i am moving when I am not or the enviroment is unsteady and swaying when I knwo it is not.
4. Odd feelings of movement - weird like sudden dropping or exagerated feelings enough to make my stomach lurch.
5. A persistent feeling that I am just not right
5. Any movement I make is accompained by the feeling or sensation of movement that just does not match.
6. Doing lots of activites like walkin or cleaning or just basic stuff makes it all feel worse.
7. I can feel spinny when I lie down and I wind up openeing my eyes to check that I am in fact still.
8. Shifting my head quick form side to side is hard.
9. The BPPV test did not induce spinny vertigo just the major feeling that I was moving and made me feel a bit sick.
10. Oh looking down always makesme dizzy but not dizzy spinny - I rarely have that.
11. When it all gets pretty strong I feel a bit faint.

Yep - think that about covers it - I keep saying to the vrt doc that gee from all I have read I thought BPPV was intermitent mine is 24/7!! he said thats normal.

I know in my heart that its harmless but boy is it horrid.
Can u relate to these symptoms - I have had then every day this year.

Thanks. xxxx

Add me to the list who has exact same symptoms as Ilia plus some ear symptoms though not many - mild tinnits, momentary deafness, popping. xxx

Back again after a long weekend....Ilia, Here are my responses to your list.

1. Imbalance - the feeling that my balance is off YES
2. Intermitent dizzyness - brought on by head cahnge and sometimes not YES
3. Verigo - the mild type - like i am moving when I am not or the enviroment is unsteady and swaying when I knwo it is not. YES
4. Odd feelings of movement - weird like sudden dropping or exagerated feelings enough to make my stomach lurch. YES, but not major stomach lurching
5. A persistent feeling that I am just not right YES
5. Any movement I make is accompained by the feeling or sensation of movement that just does not match. NOT EXACTLY FOR ME.
6. Doing lots of activites like walkin or cleaning or just basic stuff makes it all feel worse. SOMEDAYS
7. I can feel spinny when I lie down and I wind up openeing my eyes to check that I am in fact still. YES
8. Shifting my head quick form side to side is hard. NO
9. The BPPV test did not induce spinny vertigo just the major feeling that I was moving and made me feel a bit sick. NO MAJOR IMPRESSIVE SIGNS FROM THIS TEST FOR ME
10. Oh looking down always makesme dizzy but not dizzy spinny - I rarely have that. YES, SOMETIMES, WHEN IT'S BAD
11. When it all gets pretty strong I feel a bit faint. YES, ALMOST OUT OF BREATH IN A WAY, HARD TO DESCRIBE, BUT MAYBE YOU UNDERSTAND. SORT OF WINDED, BUT NOT EXACTLY SINCE I CAN BREATH FINE..DOES THAT MAKE SENSE.

ADD TINNITUS ALL THE TIME TO MY LIST, AND STOMACH UPSET A LOT OF THE TIME, PARTICULARLY IN THE MORNING. SORT OF LIKE MORNING SICKNESS, BUT I HAVE AN APPETITE, AND EATING SORT OF SETTLES MY STOMACH MORE THAN UPSETS IT.
Do you have the tinnitus too?

Vicki, I am glad we have some things in common. We love Colorado Springs. The elevation is over 6000 feet, but I am doing well with it. However, I have to be careful when we travel, as anything westward is higher, and some of the passes exceed 12000 feet, so that has set off some "panic attacks" in me apparently. I have learned to bring my meds with me just to be on the safe side. We travelled this weekend, and crossed a few passes without event (10000 foot range). This whole thing started while we lived here, so I am not sure if it would be any different at sea level. Anyway, CS is a great town, heavy Christian presence, including Focus on the Family headquarters and The Navagators publishing company. Lots of contemporary churches. We have found one we really like.

Hope your weekend went ok, talk soon.
Julianne

Hi, Julianne!
It's interesting that you mentioned whether living on sea level would make any difference. When I realized I was going to have a dizzy mess, I was trying to figure out if living higher and in a drier climate would help. It seemed like everyone on this healthboard when I first found it lived near a big body of water. So, I guess the dizzys just find us wherever we are!
We are planning on going to Albuquerque, NM during the week of Thanksgiving to see my 23 year old daughter who lives there. Then we are planning on stopping at Colorado Springs on the way home for a few days and looking at some houses for sale. We would really like to move out there next spring. It is nice to know that there are alot of good churches. We are from a fairly small town of about 9,000 and go to a very active, and wonderful church. Right now our church is in the process of putting on Judgment House. I was supposed to do the prayer coordinating but God had other plans! http://www.healthboards.com/ubb/smile.gif Just got to trust Him!
Well, hope you are doing well. I am at about my 8th day feeling better. I went to the store today feeling pretty unsteady, not sure about going, but it went great. I was so pleased. I can tell I am compensating. It is SO slow!
Blessings!
Vicki

Hi Jtiegs!!

Well done for managing a weekend away - that was brave!!

Thanks for your reply!! Oh yes I do get tinnitus too but quite mild and intermitent - I have it now actually - like u desccribe a ringing sound....

I read your other post about motion sickness - can you describe how thats feels.

Thanks!!!!!!!!!!!! http://www.healthboards.com/ubb/dizzy.gif

Hi

Jtiegs, boy am I glad someone else is having this sickness thing. I get it last thing at night as I'm trying to go to sleep and first thing in the morning as I wake up. I was getting worried for a while but then got real with myself (my partner is over in the US so that would be an immaculate conception http://www.healthboards.com/ubb/smile.gif I always had a healthy appetitie but now I find myself not always on for a big dinner and then other times I am ravenous! I got stuff from the doctor to help with the naseau and I've been finding that really helps settle my stomach. My stomach also feels like I have an ulcer or something but I guess its just reacting to all the meds I took for all those weeks!

Keep spririts up everyone!

Ugh, do you all ever have trouble with posts you write not showing up? I wrote a long response last night here, but it's still not showing. I will give it tonight, and then I will have to rewrite it. I don't have the energy tonight. Sorry! Just too tired to think about it all again and remember what I said! More tomorrow, or maybe my post will show!
Julianne

Hi all im new here i was reading through all the symptoms an i just have to say wow.. i never got pronounced as anything they tried to prove it was vertigo in the beginnings.. i live daily with

1 Dizzyness..
2. hard to exsplain but movements dont seem to match up with my perception of the movement like my mind caught it 2 seconds behind when it happened?.
3. feeling of wierdness or something wrong with my head like everythings just gonna stop..
4. nausea..
5. foggness or loss of attention or something where my head just feels dull..

and a few other things these things come an go and some days are not as persistant as others..

i ve been living with this for almost 5 years now.. after minor tests in the begining.. with so many symptoms they classified me as having anxiety .. anti depresants have ill effects on me so i had to settle with other treatments like benzodiazpines..

these didnt fix the problem never have they do however control the after math of the problems.. i do belive that the physical symptoms infact trigger occasional panic attacks or anxious behavior.. but im not really sure thats the issue..

none of the meds have ever stopped the dizzyness or the foggyness.. or most of the symptoms for that fact all they enabled me to do i guess was live with them easier an go it ll be ok soon but its not:<

5 years later im still dizzy still foggy but the first year was quite different i couldnt even get outa bed i was so dizzy and when i did i couldnt walk a straight line to save my life..
it got to the point where i wouldnt walk
has anyone else been misdiagnosed through all this ?
im just curious
i know theres probably thousands out there that have anxiety that don't belive in the diagnoses as well for its a hard one to sit down an go there no way my mind can do this.. but im almost 100% sure at this point my minds not as in the midst of the worse sorta attacks i ve had i ve wound up in emerge and i ve asked the physician mabey its just anxiety or something? and there like nope its not like that at all now lie still http://www.healthboards.com/ubb/smile.gif
i just never knew where to go for a diagnoses except my family doc who is by nature i belive a doc that treats onset eldery problems.. heart .. lungs others sorta normally later in life ailments.. and i was tested for heart and lung probs in the beginging as well but nota..
wow this is long sorry bout that it just kinda sparked my interest http://www.healthboards.com/ubb/smile.gif
any input would be great thanx in advance
Displacer

Hey thats me too - I am afraid - living hell isn't it. Do you get faint feelings at all with it - I do intermitently and that worries me too. like you I am prepared to believe that there is an anxiety overlay but thats not the cause of the actual problem.

I had a posturograph test done - that measures vestibular function. They reckon I have bppv and vestibular dysfunction - had 2 eplys - no cure as yet. Just praying to god that vrt will help - its so annoying though. Oh that darn 'off' feeling really gets to me too and the feeling that movement is happening 2 secs behind when it did is also horrid! Hey belle with the same bppv dianosis gets that too. Do u ever get the impression when u fix your vision on something that it is shifting very subtly? Great to hear from another newbie. Welcome.

HI

and yes i get those almost faint spells where you think your gonna black out an hit the floor but ya never quite do http://www.healthboards.com/ubb/smile.gif it is quite a living hell specially when it don't even feel safe to live in your own body anymore..

tis good to hear im not the only one with such symptoms i ve spoke to many with anxiety they dont seem to have the same symptoms at all.. and so i digress an look back to the things they thought it may have been but never really checked at one time they even told my i had charri type I malformation.. which is basically your brain tilting an moving down impacting your spinal column http://www.healthboards.com/ubb/smile.gif only to find out that was fulse i mean all the false diagnoses alone scare me i like just turned 26 the furthest thing from my mind is something thats gonna kill me or something ya know on the other hand im not sure i wanta spend the rest of my life in this sorta uncomfortable state either it aint easy an for the most part people either won't or don't wanta understand..

I wish ya all the best of luck im not sure how often i ll be checkin but if ya wanta talk to me i belive my emails posted http://www.healthboards.com/ubb/smile.gif
take care all
Shi

Ahh, here are all my posts. I don't know what happened, but it took a couple days to show up....oh well.

Anyway, Ilia, the motion sickness sensation (I was not a motion sick person, I loved roller coasters normally, but my husband can't ride in the car if I drive without putting his hand out the window (somehow that helps???) so this is what I percieve as motion sickness anyway), is a subtle upset stomach, not exactly nausea, but sort of, more reminicent of morning sickness if you ever had that during pregnancy. There is a general malaise and yucky feeling, sort of woozy, and obviously motion, such as riding in a car makes it all worse. You aren't exactly dizzy, that is sort of a separate issue as I can have the yucky woozy thing without the dizziness at times. (A good way of knowing it's similar to actual motion sickness for me was an account by my husband this past weekend. We went to some hot springs, and my sons insisted he do a sommersault in the water for them. This would normally be my task, being the nonmotionsick person in the family. However, those days are over, I can't even submerge my head under water without feeling dizzy and awful. So immediately after my husband did his sommersault, he felt awful. Sick in the stomach (yet still able to eat), yucky, maliase, all the similar symtoms to what I described. Of course, for a normal person, those things subside after a little while. I told my husband...."now you know how I feel almost all the time" and he just couldn't believe it. I thought that might whoop up some sympathy!

That leads me to another subject which I think I touched upon before. Swimming. Over the summer when I was really symptomatic, I couldn't get into a pool. The sound of the water, the yelling kids, the wave movement set me into FULL nausea. It was dreadful. However, I am pleased to report I was able to do the calm soaking hot springs with past weekend without a problem. But, I think I mentioned that when I watched my kids swimming in the hotel pool with my husband, the noise and waves were seriously symptom prevoking. So, calm, quiet water seems to be ok I guess. I'll take what I can get!

I am not sure what to make of the altitude Vicki. My first bout of Labyrinthitis in December happened in Charlotte, NC, not a high area. This long drawn out episode has been here at 6000 plus. Maybe there is no major correlation, but on the other hand, the doctor asked me about that, and did seem to think it could effect things. Think about decending or assending on an airplane, it causes ear pressure, just like driving up and down high mountain passes, so, for some people, I suspect it could be an issue. For me, I would say, inconclusive. I thought so with the panic attacks coming down from 12000 plus. I felt mentally stable, but something set it off, and I can only attribute it to some involuntary cause.

For the new poster, I can't remember your post name, shoot, Dis...something or other! sorry, but you will know when you read this.....As far as these "mental" causes for your symptoms, I would press for another opinion. The three doctors I have seen, a family practitioner, ENT, and Neuro-oto doc all mentioned that you can have anxiety or panic attacks, and that is fairly common with these ailments, but that they are a RESULT OF the vestibular dysfunction. Your body is reacting. It's not like we are having the vestibular dysfunction symptoms as a result of anxiety.

Have they done any tests such as the ENG and ECOG yet? How about an MRI? I have had all of these, and from what I understand, they can be inconclusive, but do seem to help sometimes in indicating that the vestibular system is the cause of the problem. My tests concluded that, as I had a normal MRI, but abnormal ECOG and ENG which shows damage to the vestibular system I guess.

Hope that helps a little. Take care all.
Julianne

Hey, Julianne!
Your description of how you feel all the time really sounds like me to a tea! I am SO weary. I have been crying more these last few days cause when it feels like this so much I just don't feel like I can cope with it. I was wondering if you are having up and down days like I am. Last week I really felt pretty good and then after about 8 days or so I started feeling the over all "off" feeling that makes me feel so bad. My neck gets so tense and my head feels heavy and imbalanced. I have been slightly nauseated non stop. I think I am getting better and then here I am again. It really scares me. What is really difficult for me to deal with is when I start reading other people who have been dealing with this for years. I am into my fourth month and I can't think about years!
Anyway, I have been to my own regular doctor and to an ENT dr. and I am going to call and get an appointment with a neurotolgist Monday cause that is who everyone says is the best choice in finding out the correct diagnosis.
Well, hope you are having a dizzy-free day!
My 23 year old daughter called awhile ago from the top of Pike's Peak! She and several other friends drove up from Albuquerque to spend some time in Colorado Springs. I thought that was kind of cool and couldn't help but admire youthfulness! being able to go to the top of mountains! Lord willing, we will be there someday soon!!!!
Blessings!
Vicki

Hi Vicki,
I am sorry you are in a rough patch. Yes, I have good and bad weeks. Sometimes I feel almost normal, and other times I think, "what is going on here, am I starting this mess all over again?". This week hasn't been too bad, but I am fighting a cold, and at night I am dizzy, having a little vertigo and so on. The tinnitus is deafening with this cold bug too. However, my overall buzzyheadedness seems intermitent. It's not too bad. But like I mentioned before, last weekend was a mess after visiting the pool, so you just never know.

Have you noticed anything in particular that you do that may set it off for periods of time? My doctor said that can happen. So the noisy pool thing was a good example, and I was sick for two days. And also the movie theater thing set me off, so I wonder if you are doing anything that might aggravate things, or just cause your brain to misfire more than normal. Have you noticed any correlation at all? On the other hand, I can have a lousy week without doing anything to make matters worse. So who knows.

Pike's Peak is great, and easy to get to the top of. We have an annual pass to drive up, and you can also take a cog railway. Both are expensive, but we figured we should buy the pass since we have family and friends visit, and it would pay for itself. I was up there about a month and a half ago with my Dad. I was having a good day, so the elevation didn't bother me much. It's a great view, very nice. In the spring we were able to take the kids us there to sled, and then put shorts on when we came back down. There's a serious change in weather between here and there! My husband runs up to the top. I would love to do that someday, but not this week!

I hope you get a chance to come through the area, and eventually move here. I am sure you'll love it. I wish we could stay indefinitely. This is our best assignment so far. My husband is in the military, so we are stationed her for a while, but eventually will have to move to another post. We plan on buying property here though for retirement. He's got about 8 more years to reach his 20 year mark.

Don't dispair about your symptoms, I will keep you in my prayers. I suspect that things will get better over time. That is what I keep hearing, over and over from doctors. It's just a slow process for your body to work out. But I feel for you, believe me, I know how you feel, and I am there, on and off. Today, aside from my tiresome scratchy throat, I don't have much to complain about, so you caught me on a good day to lend support instead of co-vent! Are you taking any meds on a regular basis? I don't think we discussed that.

I look at it this way, if I continue to have some good days, even though there are setbacks, that's an improvement over having repeated bad days, over and over. So, if you do have a few good days, that's a good sign that things are going in a good direction.

I'll leave you with a little quote I heard in church this morning. Our pastor said, "as C.S. Lewis says, 'When we pray, we get God's perspective.'" Something like that anyway. I found that to be a profound idea, that prayer can get us a bit closer to God's perspective on things. We can't know why we are afflicted with this frustrating problem, but we can pray and receive a bigger picture. I also like this idea...."prayer doesn't change God, it changes me."

So, maybe that will give you some encouragement today like it did me. From your previous posts, I got the sense that you have this part figured out already! But sometime I need these ideas pounded into me!
So try to have a good day, and keep your spirits up.
Take care, Julianne

Hi, Julie!
Thanks for taking the time to write. It probably seems kind of crazy, but it probably was one of the most encouraging things I have had for awhile. I have a whole church of the sweetest people, but not one of them can understand what I am going thru.
I can't even go to church right now, cause that is one of the things that really set me "off". I think it might be cause I get nervous cause our church is very active, crowded and loud. And people are warm and huggy and I can't take all that right now as much as I miss it! I don't really know what put me in this rough patch. Today, my overall imbalance seems better but my neck and head have been killing me! I am almost sure that my neck muscles are shot from my head being off balance for so long. It never feels like it is sitting on top of my shoulders right anymore. Right now I have a Therma-care heat thing on it and that has helped alot.
I am not taking any medication. I have made the decision from talking to the balance therapist in Chicago that if I am comfortable not taking it then the compensation should come along better. I found Subs30 story on another dizzy board and that is what he did and really was faithful in doing the balance exercises and about a year is now dizzy free. That is my decision now, anyway. I am going to make an appointment with a neurotologist tomorrow. Pray God will lead me to a good one. So I can get further testing. So far the only test I have had is hearing (which came out fine).
I have been struggling more lately with this illness. Our church is having a big event everyone is SO excited about cause people's lives are being changed and here I am. I have never been put in such a position of just trusting God when nothing makes sense right now. I love Charles Spurgeon. He suffered much in his life and I have really been relating to him recently!
Today his devotional said:
As under the old law no Israelite could receive more than the "forty stripes save one" which ensured careful counting and limited suffering, so it is with each afflicted member of the household of faith-every stroke is counted. It is the measure of wisdom, the measure of sympathy, the measure of love, by which our chastisement is regulated. Far be it from us to rebel against appointments so divine. Lord, if thou standest by to measure the bitter drops into my cup from thy hand and drink according to thy directions, saying, "Thy will be done."
It talks about how he loves us without measure, but our suffering is measured and He knows and He is in control. This is the time for me to believe and hold fast His precious promise that ALL things work together for good. I know He is good! Please pray for me and I will pray for you and hope your cold gets better FAST!
Thanks again for encouraging me!
Blessings!
Vicki

Hi Vicki,
I didn't realize you hadn't had the usual tests that are offered for vestibular problems. I sure hope your Neuro can order them. I guess they can still be less than definitive, but it's worth a shot. My Neuro-oto explained it like this. There are several areas of the inner ear, and the tests can only look at one part. The other parts, which could be damaged, can't be examined unless a person is dead, and then what good does it do?! So, the ECoG and ENG can tell them something, but if it doesn't, that doesn't mean you're crazy! It just means they can't see the whole picture. Did the docs do blood work? That was the first thing my doctor did, just to rule out other causes. I also had a holter monitor on for 24 hours, which was silly, but I guess they had to be sure it wasn't my heart or something. The MRI was also one of the initial tests I had. I have read that usually they don't order that right away (because of cost), but I think I was very pursuasive with my family doc. I went in there, very demanding of some action... repeatedly. I just wasn't satisfied to go home with a container of meclizine.

I wonder about your neck pain. I don't have that, but maybe it is just fatigue from holding your head at odd angles. On the other hand, I would definitely mention that one to see if the doctor has any other ideas.

I am sorry you can't go to church. That is very frustrating. My church is loud (I need to start bringing ear plugs for the music as I am noise sensative now) but I seem to do ok, plus I can sit down if I feel off, no one minds. But I also don't feel a lot of pressure or chaos going on. I guess we aren't all that huggy! I mean, it's a pretty relaxed atmosphere. The building is a closed movie theater that they renovated into a church, so the seats are cushy, the room is fairly dark, and I can sit back and sort of fade into the background if I am not up for heavy socializing. I wonder if you would be able to do a small group activity or something. Do you have study groups or anything? I just feel really bad for you not being able to get that spiritual lift when you need it. I will continue to pray for you. Stay well.
Julianne