Re: Objects moving in my vision, can't take it anymore!!!!
Krahon,
Yes I have 24/7 symptoms. Alot of visual stuff, brain fog, constant balance issues, tingling, muscle spasms and leg weakness. A bunch of stuff. I keep going to drs with the hope that something will take. I have tried alot of meds in the past, but am kinda on hold in that dept right now. The meds in the past have not been helpful and I'm just not up to dealing with side effects right now. Its a very long process.
Any info we share has the potential to help the others. Thank God we have this board.
Re: Objects moving in my vision, can't take it anymore!!!!
Krahon, yes, I have a lot of neck issues. Had them for years. I was self-adjusting my own neck quite a lot before this thing hit me. I thought I tore the verterbral artery but several tests showed otherwise. If it IS cervical, in my case anyway, nothing can be identified that would have caused it.
Actually yes, I have had BOTH prolotherapy AND neurocranial restructuring done. However, this was BEFORE my illness, and just for the neck problems. The prolotherapy is great for joint problems. However, I have no idea how the dextrose in the solution will react with the neurological symptoms in MAV. Sometimes, anethethetic they use gets into the blood stream and makes you dizzy for a while, and makes things sort of "surrea". They call it the "kane" effect. It goes away but it's uncomfortable. I just don't know what it would do during MAV. Same goes for neurocranial restructuring. It could cure it, or it could make it a 1000x worse. I just don't know. I am very close to doing NCR for this, I just don't have the guts because I have it SO BAD, and can't even function at all, I can't take the slightest risk in having an upshift in symptoms. Maybe someone who is more moderate in symptoms can give it a try. I didn't have a problem with it when I had it done several years ago, it was very calming in fact
Re: Objects moving in my vision, can't take it anymore!!!!
Hey Rich...just stopping by to say hi and that i still am in the same boat as you. believe me...the visual symptoms of the CONSTANT shaking, jumping, moving that are there from the moment we wake up to even when i close my eyes--the blackness moves....it can make ya crazy!!! i'm actually on 15 months since this started today. oh the freakin joy. now, things have improved since the very beginning. but i'm not normal, i hate how my life is now. i know things could be worse and blah blah blah...but they are pretty darn bad in my opinion. i mean it's DAILY---and i agree with you that it just simply cannot be migraine causing this to be constant, day in and day out, with NO relief whatsoever for a SECOND!!!!!! if someone can explain to me exactly how it's possible...i will give them a cookie. i'm tired of not having one day of feeling good out of 15 months. i'm sick of it too. well, i am going to see yet another neurologist--as referred by my primary (who is really trying to help with this).
she sent me for another MRI/MRA of the brain a month or so ago. came back normal--go figure. she also sent me to a rheumatologist for the symptom of red/hot feet when standing that i was asking you if you had. well, he knew the name for it--erythromelalgia--but however, doesn't know the cause and isn't sure if the dizzies/vision junk is related. i have been having flutters, besides the normal chest pains, recently and they've been frequent. she decided to do an EKG--came back with sinus arrhythmia. so i get to try out an event heart monitor to see what's going on with that. at least she's trying to help me...more than any of these other overpaid doctors...geez. i've spent a small fortune the past 15 months on just trying to find a "cure" for what's wrong with me. i don't think i ever will. the nortriptylin was a joke for me. i'm starting the neurontin--finally--next week. i haven't wanted to take it cuz of a huge thing i have going on this coming tuesday---that i jsut can't afford to feel worse than i already do...ya know? and plus, i just think it's a crock of you know what.
so yeah, i don't know the point of this reply/rant...but i know that i'm here for ya and feel ya on how horrible this is every day. i've thought a few times about just going and playing in traffic, but i don't want to be selfish lol. so yeah, i'm with you---we msut figure this out...and there's gotta be some sort of an answer. i cannot live the rest of my life like this..that's unacceptable and i will be in an asylum by the time it's all over with.
Re: Objects moving in my vision, can't take it anymore!!!!
Hi, Alexi--
I am very sorry to hear you are dealing with these visual things as well. Do they think the nori produced the heart issue? I believe it can do that. By the way, I have heard good things about the neurontin, so hopefully it will give you some relief.
Re: Objects moving in my vision, can't take it anymore!!!!
I hear ya Alexi!! I am having similar heart problems too, with flutters now. But my heart monitor is normal at this time. My heart monitor just showed some sinus bradycardia (slow heart). Maybe the topamax did that. These migraine drugs seem to affect the heart I guess. Really great!!! You try to cure one problem, and you cause another in the process. Sorry for being so down, but I really don't believe I am going to survive this.
People, if I ever stop posting all together, and I don't come back, you know why. I have died. That would be the only reason I don't come back once in a while and at least update you. Since we can't contact each other, that is the only way you would know if I were still alive. It just doesn't seem good. These symptoms are positively INSANE!!!! I really don't want to die, but my body can't handle this. I'm barely hanging on
Re: Objects moving in my vision, can't take it anymore!!!!
Hi Violet! How are you doing these days? are you on meds now? i can't remember. i do hope you are seeing some improvement! well, the doc wasn't sure if the nori caused the flutters or what, so she's gonna have me on the monitor for a bit. i don't know if it did, but i was having chest pains before i started taking the nori, but wasn't having any fluttering...so who knows. none before all this junk started--EVER. i'm 27 and falling apart. wonderful. i do hope you are doing better.
Rich!!!! Don't give up hope yet....you're only at 8 months i know it sucks....and sucks really badly. i'm tired as hell from it all too. the way i see it is that i am not going to stop pursuing the cause until the day i die---and not by my own hand. and yes, the thought enters my mind a lot...which is bad, i know...but i'm gonna die trying to get better and not give up. i actually had a good cry after making that reply to you last night. i'm just so fed up and can't believe this is happening to us. but i want to believe there must be a light at the end of the tunnel. are you still on the topomax? i think that was what you are on???? now i found something rather interesting about a study with people with oscallopsia...that neurontin was shown to help with people. now i know that it may technically not be what we have, but i'm willing to give it a shot. i will let you know how it goes soon. since we have pretty much identical symptoms...i think we should try all kinds of junk til we finally find something that works....lol...stupid i know...but worth a shot. even though i know chemistry is different with everyone, but hey, ya never know. right now, i have a sinus infection and am on antibiotics again...fun stuff. so once my big deal tuesday and i'm off the antibiotics next week...i'm goin for the neurontin. so we'll see. you hang in there man. i know it's sooooooo difficult, but we gotta beat this somehow!!!!! i waged war on myself quite some time ago lol. i know ya have some fight left in ya
Re: Objects moving in my vision, can't take it anymore!!!!
Hi, Alexi--
I'm glad you're keeping an eye on that--sounds like you'll get to the bottom of it. I really hope the neurontin does the trick for you!!! Keep us posted! I'm doing ok; had a rough time with the nori and have been trying to get back to baseline. VRTs seem to be helping, but still far from functioning normally. Still dizzy all the time and still quite tired, but it is all less that at the beginning. Need to try more meds but not looking forward to that whole process. Thanks for asking!
Re: Objects moving in my vision, can't take it anymore!!!!
Alexi, the research on oscillopsia won't help you. you don't have that! You have the OPPOSITE of oscilopsia lol. We have objects that move when we are still. Oscillopsia happens when people are moving lol. So, that's out the door. But, it's a step in the right direction. Klonopin works similar to neurontin and I'm probably going to get back on it because it DID slow down the shifting the last time. Coupled with the topamax, which I am STILL taking, just not at a high dose because it induces asthma at a high dose, it MAY help this symptom and calm this down. But I'm going to need another preventative. No doubt!
When you say I'm only 8 months in, do you think that I still have a shot at improvement?? I'm actually WORSE than I was when this started. I didn't have all the shaking, vibrating when this started. I only had the shifting. Now objects shimmer, shake, vibrate, and the movement is worse. I remember in February, when I was only a month in, several days where I could hardly notice the movement at all. Now, it's 24/7, never a decent day at all. No breakthrough days anymore as I call them. I wonder what changed.
Re: Objects moving in my vision, can't take it anymore!!!!
yeah, the oscillopsia thing was something i thought may be at least similar--as far as things moving--but yeah, i know it's different, i just am hoping maybe something may work like it does for that...who knows?!? it's worth a shot i suppose. i'm sorry you're still having a horrible time with this. well, it's weird...at about 8 months i was definitely still having a bad time. it seems like time has improved things a tad for me....however, as you said, never any moment of relief from it...it's relentless. i wake up, it's there, close my eyes and it's there...and every second in between. i don't know if i'm just getting more used to it or what?! lol, stupid, i know...cuz i'm really not "used" to it. it's still frustrates me to no end. i do think as you said that trying the klonopin may be a great shot for you. it's worth a try anyway if it seemed to help some in the beginning. have they said anything about effexor helping with the visual issues at all? i'm still not 100% convinced it's migraine....it just seems like crap...to have a migraine for 15 months straight...with no relief for ONE second? b.s. if you ask me...but what do i know.
hang in there...let's try to get this figured out!!
Last edited by alexiwildchild; 09-12-2008 at 01:53 PM.
Re: Objects moving in my vision, can't take it anymore!!!!
Well, it's interesting. The appearance that things move definitely seems worse than the beginning. However, my tolerance for daily activities while dealing with it has increased, no doubt. I remember, after being bedridden for almost a month, I ventured out to the store for the first time, and spent maybe 1 hour out. I went to the store, then the video store, then came home. I was SHOT!!! Exhausted, symptoms through the roof. Now, I can do all that, plus some, and I have no change in symptoms. The only time I get an uplift in symptoms is if I do physical labor. Otherwise, I can do basically all the activity I want and the symptoms are about the same. That doesn't mean I am happy. I'm not. I suffer through the entire day. BUT, I CAN do it, and I'd be lying if I said I couldn't. But when I do physical activity, the head pressure comes, an uprise in all the symptoms and my light sensitivity gets worse, and I even get some lightheadedness upon standing when I've pushed it. Then I have to rest for DAYS before I normalize. I have a feeling that if I could get one more preventative that has a decent side-effect profile like the topamax at this 50mg dosage, I could be pretty decent. All in all, I can't complain with my progress with just one preventative, and only at 50mg. Unfortunately, when I go higher, I can't breathe. I don't like the idea of an antidepressant due to the sexual side effects and the verapamil due to the risk of cancer, heart attack, and light-headedness. That doesn't leave much. The anticonvulsant category was going to be my savior, as I could feel the topamax working, and then thie breahing issue had to happen. So I had to cut back. I've heard of other people having this rare side-effect. Now, I don't know what else to add. But the topamax hasn't affected the world moving one bit. It has only helped to raise my daily tolerance for activity each day. That's about it. I need something else.
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
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.
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
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.
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
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.
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
i know it sucks....and sucks really badly. i'm tired as hell from it all too. the way i see it is that i am not going to stop pursuing the cause until the day i die---and not by my own hand. and yes, the thought enters my mind a lot...which is bad, i know...but i'm gonna die trying to get better and not give up. i actually had a good cry after making that reply to you last night. i'm just so fed up and can't believe this is happening to us. but i want to believe there must be a light at the end of the tunnel. are you still on the topomax? i think that was what you are on???? now i found something rather interesting about a study with people with oscallopsia...that neurontin was shown to help with people. now i know that it may technically not be what we have, but i'm willing to give it a shot. i will let you know how it goes soon. since we have pretty much identical symptoms...i think we should try all kinds of junk til we finally find something that works....lol...stupid i know...but worth a shot. even though i know chemistry is different with everyone, but hey, ya never know. right now, i have a sinus infection and am on antibiotics again...fun stuff. so once my big deal tuesday and i'm off the antibiotics next week...i'm goin for the neurontin. so we'll see. you hang in there man. i know it's sooooooo difficult, but we gotta beat this somehow!!!!! i waged war on myself quite some time ago lol. i know ya have some fight left in ya 
