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Old 09-16-2008, 06:01 AM   #31
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sammi2 HB Usersammi2 HB Usersammi2 HB User
Re: Objects moving in my vision, can't take it anymore!!!!

Do you have Meniere's disease?

 
Old 09-16-2008, 06:11 PM   #32
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Re: Objects moving in my vision, can't take it anymore!!!!

No, it's not minieres'. Had every inner test imaginable. Whatever this is, it's not something obvious

Rich

 
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Old 09-17-2008, 01:51 PM   #33
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Re: Objects moving in my vision, can't take it anymore!!!!

just to let guys know still suffering 24/7 the "visual dizzies" are still there going on 4 years it, absoulutly sucks. today is a bad day for me i have been having major anxiety that will not seem to go away. Thus the shaky vibrating vision thing is so much unbearable. I hope some one finds an answer to what we are suffering with, soon! I just can not possibly live my lifge like this anymore. Every morning i wake up to this slowly opening my eyes thinking this might be the day it ends. But then wham my eyes open up and try to focus and here i am still dizzy please someone figure out what is wrong . I am only just turned 21. I hate my life the way it is with this thing. I used to enjoy life now i dont. some one out there has to have gotten some relief from at least some medication or an answer. You know it wouldn't be so bad if i knew it was not some life threatning illness that is not going to be the death of me.

there must be a way that we can some how get ahold of each other

 
Old 09-17-2008, 02:29 PM   #34
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Re: Objects moving in my vision, can't take it anymore!!!!

Ya, is there a way?

CK

 
Old 09-17-2008, 02:38 PM   #35
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Re: Objects moving in my vision, can't take it anymore!!!!

Hi Cknmbbl, Tbissell and Board,

I'm really sorry that so many of us are dealing with the same kinds of awful symptoms. The past few weeks have been rough on me, also. Ckn, you never responded to my last post on the thread called Swaying When Standing. You should go back and read it through, and then let me know your thoughts. The same for you, Tbissell. I hope your evenings are a little more peaceful - my days at work are stressful, which adds to my already depressed state about all of this head stuff. Probably not the best day for me to be posting, lol.

xo

 
Old 09-18-2008, 08:33 AM   #36
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Re: Objects moving in my vision, can't take it anymore!!!!

What we are dealing with is, indeed, a constant nightmare.
I am a newbie to this message board BUT NOT to this condition and had been undiagnosed for 15 years.
24/7 off balance/dizzy, ears popping, preasure behind eyes, preasure "within" ears (causing the popping) dull headache ALWAYS (sometimes much worse!) feeling spacy, foggy, like in a dream, all musles in upper back, face and neck very tight and extremely tense, nausea, tinnitus at times (a whoshing sound for me) and of course disturbing visual problems, aura, green sparkles, worms or cells moving in my vision over the entire visual field, afterimage, when my eyes move one way, things "feel like" they move the other way, glasses make it worse.

Othe factors that make it worse, elevated humidity, running, going to a mall, or busy city, or anywhere where there is a lot of things moving, busy environments, also where there is a lot of audible noise, so its very bad when you get both a lot of visual and audible buziness.

Blowing my nose increases all pain "preasure behind eyes, ears, etc."

We need to find out what we all have in common and just keep checking EVERY possible problem.

I have been so far been diagnosed with MAV (finally after 15 years, something)

Do all of you have the same issues, and if so when did it all start??

Do all of you work, as mine is getting worse as of late and for the first time in 13 years, even though work is hell (i work in a very buzy retail store managing people, i don't even know how I do it) I don't think I can do it anymore. I need something I can do from home.

Worse thing is how do I explain to my employer whats going on, you tell people you have MAV or vertigo, or what ever we have and they are very unsympathetic, I mean we all "look" normal so its hard for them to believe we are in a REAL nightmare 24/7.

I have so far been to the Massachusetts Ear and Eye Infirmiry, no real luck so far, here is real important question:

WHICH HOSPITALS/DOCTORS HAS ANYONE HAD REAL RESULTS WITH, WHO TAKES US SERIOUSLY? Please let us all know

Tyler a.k.a. krahon

 
Old 09-18-2008, 08:42 AM   #37
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Re: Objects moving in my vision, can't take it anymore!!!!

Hi there! I thought that MEEI was a great place to go...Dr. Rauch is well-known for treating these issues. Are you doubting your MAV diagnosis? Did they offer treatment options?

I have had great difficulty with work issues...I am currently on sick leave.

Hope you're having a good day today!
Violet

 
Old 09-18-2008, 10:41 AM   #38
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Re: Objects moving in my vision, can't take it anymore!!!!

Hey Violet,

No I haven't seen him yet, I am on the waiting list as it were, a different doctor there had given me the MAV diagnosis so far.

I don't doubt there diagnosis, I doubt THE diagnosis, as MAV is a kind of, "if we rule out inner ear then its MAV"

There is no actual test for MAV, you fall into it by default, I still want to check into cervical Vertigo, and a number of other disorders I have found on this and other health boards.

I am sorry you are also having work issues, I feel your pain, I have to work in three hours and just the thought, of tring to remeber what I am doing and not making a mistake because I forgot something because I am totally spaced out, well.... stresses me a little. We are the busiest location of a retail giant and it TAKES A LOT out of ya

I need to save my leave for some more testing next month, I have to come off klonopin for the tests so I literaly will be bed riden for the duration, I get really bad when I come of klonopin, and i stay bad until i get back on it.

Have you ever gotten to 100% (or 80% i would take) ? If so how did you? Also what have you tried, what haven't you? See my new post, i am trying to get as many people to reply to get a better understanding for all of us, especially the newbies

I wish I could personally help you as feel your pain

Thanks for replying, and please, if you have the time, read my post and reply

 
Old 09-18-2008, 03:01 PM   #39
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Re: Objects moving in my vision, can't take it anymore!!!!

I know--I have been struggling with the idea of MAV for eight months now. I have found it hard to believe that that could cause such disability and come out of the blue, but apparently it does that. I still question the whole thing, but I think it comes down to problems with neurotransmitters, which then cause tons of symptoms. I heard another expert (Dr. Baloh) say something about how it's not exactly like a constant migraine, but it is a migraine equivalent...it is somehow related to the same things that cause migraine. I may have that wrong, but it is how I interpreted it.

I have only gotten myself to about 65 percent tops with time and supplements (b2, other b vitamins, magnesium, 5htp, etc). I'm seeing a doc next week to examine my hormones. If that doesn't reveal anything of interest then I'm going to start trialing some more meds. I need help with this...can't stay this way another year. I've been very debilitated by it...going on 10 months now. Hope this doesn't sound gloomy! It is just what it is. I find I can do a little more as the months go on, but I am utterly exhausted by doing them.

Dr. Rauch seems wonderful. Let me know what your experience is like with him! I'm thinking of doing a phone consultation with one of these national experts on the subject.

Take care & good luck!
Violet

 
Old 09-18-2008, 09:04 PM   #40
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Re: Objects moving in my vision, can't take it anymore!!!!

Your right Violet, it is what it is...but look on the bright side, at least thers a little more understanding out there now vs when I first got dealt this super fun card, even though there are no clear answers.

15 years ago, well.. everyone thought I was a bit insane And when I self prescribed myself the only thing that helped, they said it couldn't possibly be helping me, it must all be in my head However most normal people when they look at you or me, think that we are fine, some understand, some don't.

I found during an MRI that valium helped my vision and pressure quite a bit, not 80%, more like 30%, but I took what I could get. I didn't like the idea of Valium so I settled with the milder Klonopin. I have to go off it for a couple weeks within the nest month or so for more tests, I go right back to the very worst state of it all in 24 hours from stopping the med. Only missed a full days dose twice in 13 years, both times were unforgetable...

Oh yea, the whole, "One day your ok, and the next day you can't find the word ok in a crossword", thats where I find my only hope. Reason would always argue it can be reversed somehow, but how?

Neurotransmitters, etc., the doctors try to explain, I get it... I mean really, I actually get it, so how do we change it? Whats actually causing the entire change within us? why one day and the next? The answer lies in us, and starts with what we all have or had in common right at the time this all changed for us, thats the first key. I haven't found it yet, but its out there.

The only answer to any question is: we will get better, period. Unless they spot white brain matter during my next MRI I will not be convinced that we try a ton of pills and stay half medicated the rest of our lives. Same with you and the rest of us, no white brain matter equals pretty good chance to still have hope, with white tissue, well not as probable, but still, can always get better, maybe not as much. In any case I will settle for something better, a little here and there, whatever I can get.

Something went physically or chemically wrong in all of us, which has caused what we all have, and it may not be the same thing in all of us, but I am sure most of us can get a lot better.

We have to listen to our bodies, and take a lot of notes.

For 13 years I stumbled along in a daze working crazy hours, with a smile on my face and hole in my soul, after I got myself to about 50%, but this time, I am not giving up so easily.

I am going to see everyone I can and will be more then happy to let you and others know what I find, I will tell you if the good doctor here is ok

I'm feeling way out of it tonight, and I can't think much more tonight, but I do hope you have a good day tomorrow.

Let me know if stumble upon anything noteworthy

The answer is inside us... if we both got ourselves to 50%, we can go the distance

Take care Violet...

Krahon

 
Old 09-18-2008, 09:05 PM   #41
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Re: Objects moving in my vision, can't take it anymore!!!!

hey violet! i was just wondering...is it an endocrinologist that you see for the hormonal testing. i brought it up to my ob/gyn and she just kinda thought it wouldn't cause my problems blah blah blah. i hope you get some answers!!




RICH>>>>> hey, have you ever read about superior oblique myokmia? does this sound like anything that could be a possibility for us?

Last edited by alexiwildchild; 09-18-2008 at 10:36 PM.

 
Old 09-19-2008, 12:34 AM   #42
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Re: Objects moving in my vision, can't take it anymore!!!!

Quote:
Originally Posted by krahon View Post
I don't doubt there diagnosis, I doubt THE diagnosis, as MAV is a kind of, "if we rule out inner ear then its MAV"
I don't really understand why people feel this way. If instead of calling it migraine associated vertigo, we called it 'chronic dizziness syndrome' would that make it any different? It's still the same underlying disorder, it just seems that people think 'Im suffering too much for this to possibly be migraine', and worse still they still think of migraine as a periodic headache. Migraine is a disease - you don't have "a migraine" when you have a headache. You have migraine as an individual - and you have episodes of migraine. For some that episode may be continuous.

Treatment is not that difficult to attempt, but some seem resistant to it while they wait to find out they have some horrific neurological disorder that vindicates the way they have been feeling. It never happens.

Migraine is a pervasive disorder and a huge battle. The weapons are there to fight it but its very common that sufferers (and their doctors) won't initiate and stick to a proper medication trial. The meds really do work.

 
Old 09-19-2008, 05:48 AM   #43
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Re: Objects moving in my vision, can't take it anymore!!!!

Hi, Alexi--

Yes, that is what an endocrinologist is. I have no idea if it will be helpful or not, but I do just want to see if anything is amiss with the hormones, thyroid and adrenal glands, etc. I'm sure something set all of this off, and it may be hormone-related. I was under severe emotional stress for about a year and a half before my dizzies started...then I had some physical issues and then this started. I think it is worth investigating...it's just a few blood tests. I'll keep you posted if I learn anything--I think it will be three weeks before I get results back. Note: most ob/gyns don't seem to know much about hormones. If you're interested in looking into it, call an endocrinologist or search for someone near you who uses bioidentical hormones.

Hope you're doing well today!
Violet

 
Old 09-19-2008, 06:02 AM   #44
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Re: Objects moving in my vision, can't take it anymore!!!!

I think it does take an adjustment period for some of us to understand what migraine is and/or that we actually have that, as many of us have had few headaches, etc. etc. It's a learning process. Even many docs who treat migraine don't really seem to get the disabling effects of it.

Trialing meds may be necessary, but it is more difficult for some people than others. For those who are already dealing with severe depression or other mood changes with this illness, trying meds that either increase our symptoms or cause new psychological or physical issues is not only hard but also potentially dangerous. Those of us who are primary caregivers already find it hard to care for our children; we can't afford to be further incapacitated. Others may want to have children and so cannot be on the meds, which by and large are contraindicated during pregnancy.

So, it's complicated. But of course we want the med that works for us, so I'm sure we'll keep trying. In the meantime, it's good to know that others have found the right med combo and are doing so much better.

Violet

 
Old 09-19-2008, 06:49 AM   #45
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Re: Objects moving in my vision, can't take it anymore!!!!

One more thing about this is that b/c of the managed care system of health care docs spend about 3 to 9 minutes with each patient. This is not enough time to cover symptoms, consider possibilities, and educate the patient. What this means is that many of us have a lot of unanswered questions and others of us do not feel that every angle has been considered. Unfortunately, it is left up to the patient to rule out various disorders (by proactively seeing different docs) and get diagnosed properly.

Everything I have learned about migraine and inner ear disorders has been from my own online research, and I imagine this is the case for many. It is no wonder that so few people have a grasp of the nature of these illnesses or that so many people still don't know what's wrong with them after years of dizziness.

Just more reasons why I am so thankful for this board!!!

 
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