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Old 09-09-2008, 06:39 PM   #16
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Boslee2008 HB User
Re: Objects moving in my vision, can't take it anymore!!!!

Seriously, enough is enough. And none of these doctors can do anything but prescribe topamax, verapamil, effexor, ami or nortryptiline for the most part?? Maybe some klonopin?? NOT good enough. Not NEARLY good enough!!

Until someone steps up and figures this out, we will continue to be victims of the medical establishment. They love us. We are tough cases, and we keep coming back and paying the bills for them. Without us, they can't have their nice cars and houses. I'm sick of it. I suffer day in and day out!!!

Rich

 
Old 09-09-2008, 11:57 PM   #17
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amww HB User
Re: Objects moving in my vision, can't take it anymore!!!!

The only way out of this is proper medication trials.

It took me nearly 11 years and over 20 medication trials to get to a point where I feel stable on 3 medications.

There is plenty of research occurring - people with epilepsy are suffering as well but are in exactly the same boat us - having to go through long medication trials. The reality is that better treatment is still a while away, but researchers like those at UCLA (Dr Baloh) are making progress through genetic studies. Understanding the genetic causes of this condition are the key to developing effective treatments.

 
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Old 09-10-2008, 06:17 AM   #18
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Re: Objects moving in my vision, can't take it anymore!!!!

Adam--

In your experience, is it really possible to get off the meds eventually? I guess it all depends on the person. I keep hearing about people who break the cycle and get off the meds, but I have never met such a person. I usually hear of the opposite--that people tried to get off and then could not. I can accept taking meds for life, but like many women (and men!) on here, I still want to have children, so it gets a little complicated.

Thanks for your help and any thoughts on this!

--Violet

 
Old 09-10-2008, 07:15 AM   #19
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Re: Objects moving in my vision, can't take it anymore!!!!

I think that alot of this is still very much a mystery. I truly think there is so much that is really unknown. I think some people respond to treatment and others have a long battle ahead of them trying different things. I think in the beginning I was told this is treatable and not fatal. I was thrilled by that news. Still am. I just didn't realize it could and would take years to find something to take the edge off. At my last neuro appt my dr said he wouldn't be suprised if it took several more years to find my med mix. Everyones body is different.

CK

 
Old 09-10-2008, 09:35 AM   #20
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Re: Objects moving in my vision, can't take it anymore!!!!

hey ck and violet, and well everyone, we gotta help Richard and our selves out, the doctors are not, your all right they don't know the true answer thats why they keep giving us a million different drugs HOPING it will work, until a doctor gets this, I don't think a doctor can trully fix it..

Do any of you also have neck pain, tingling in your hands, weakness along with aura, cracking sounds/sensations in ears, and in neck? etc. 24/7? maybe is cervical of some type, what this IS, is something that is not working right in our bodies which in turn causing symtoms, and are symtoms are all the same.

So I urge all of us to try everything, methodically, to see what helps some, in order to find a solution, I have more tests coming up with a vestib spec/mris etc., but I am checking into everything, NeuroCranial Restructuring (ncr), Prolotherapy, etc.
Get the word out see if anyone has had ANY positive, LASTING results, that what we REALLY need

 
Old 09-10-2008, 12:10 PM   #21
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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.

CK

 
Old 09-10-2008, 12:19 PM   #22
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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

Rich

 
Old 09-11-2008, 12:31 AM   #23
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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.

hugs to you

 
Old 09-11-2008, 06:56 AM   #24
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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.

Take care,
Violet

 
Old 09-11-2008, 12:33 PM   #25
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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

Rich

 
Old 09-11-2008, 02:21 PM   #26
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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

 
Old 09-11-2008, 04:28 PM   #27
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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!

Take care,
Violet

 
Old 09-12-2008, 01:39 PM   #28
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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.

Rich

 
Old 09-12-2008, 02:52 PM   #29
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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 02:53 PM.

 
Old 09-12-2008, 05:27 PM   #30
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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.

Rich

 
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