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Old 07-12-2007, 09:10 AM   #1
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New here... does this sound like MAV or VN or what?????

Hello everyone,
I have been coming to these boards for awhile, but new to posting. For the last 2 and 1/2 years... I have had a constant, 24/7 dizziness where my body feels like it's swaying back and forth, or like a magnet is in my head... pulling it forward or to the side or backward. Sometimes, when the dizziness gets really bad, the room starts to move, but usually I am the one feeling like I am moving. When I wake up from sleep, I have a lot of nystagmus... which calms down a little bit after I have been up for awhile. I also get very lightheaded, which is totally different sensation from the dizziness. On top of this, I have really bad headaches every single day, that never let up. I have light and sound sensitivity. I have constant ringing in my ears. The worst symptom of all is a sensation of being trapped in my head... like someone drugged me, or like I just woke up from anesthesia, and this sensation is with me 24/7 as well. It is worse than the dizziness and tinnitus. I also have really bad fatigue all the time, from these symptoms. I have had many different diagnostic tests done... including MRI's of brain and c-spine and jaw, CT scan of sinuses, physical therapy evaluation by a VRT specialist, bloodwork up the wazoo, audiograms and tympanograms (hearing is normal and no detection of eustachian tube dysfunction), appointments with a neuro-otologist, and tons of different holistic health modalities.... BUT, so far, not one doctor or health practitioner has been able to properly diagnose me. By the way, my memory and cognitive ability are fine... so I don't have that kind of "brain fog". The kind of brain fog I get is an actual physical sensation of being totally drugged... and almost like I am looking at everything through a video camera lens. I am very medication sensitive, since I already feel drugged all the time, and it is such a horrible sensation... so I am not currently on any meds. When this first started 2 and 1/2 years ago, I was prescribed various benzos to help calm the dizzies, but I had very bad side effects from them, so I stopped taking them... I have been too afraid to try any other meds, due to my medication sensitivity, and the drugged feeling I have all the time anyway. My own conclusion, at best, is that I have uncompensated vestibular stuff going on, or MAV, and also TMJ stuff (I have had a lot of problems with TMJ, and it got really bad after the dizzies and drugged feeling began 2 and 1/2 years ago). But, can anyone here please tell me if they relate to the 24/7 feeling of being drugged and looking through a camera lens?? Can this terrible symptom be a part of uncompensated vestibular stuff, or MAV?

 
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Old 07-12-2007, 11:15 AM   #2
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Re: New here... does this sound like MAV or VN or what?????

Quote:
Originally Posted by highdesert71 View Post
Hello everyone,
I have been coming to these boards for awhile, but new to posting. For the last 2 and 1/2 years... I have had a constant, 24/7 dizziness where my body feels like it's swaying back and forth, or like a magnet is in my head... pulling it forward or to the side or backward. Sometimes, when the dizziness gets really bad, the room starts to move, but usually I am the one feeling like I am moving. When I wake up from sleep, I have a lot of nystagmus... which calms down a little bit after I have been up for awhile. I also get very lightheaded, which is totally different sensation from the dizziness. On top of this, I have really bad headaches every single day, that never let up. I have light and sound sensitivity. I have constant ringing in my ears. The worst symptom of all is a sensation of being trapped in my head... like someone drugged me, or like I just woke up from anesthesia, and this sensation is with me 24/7 as well. It is worse than the dizziness and tinnitus. I also have really bad fatigue all the time, from these symptoms. I have had many different diagnostic tests done... including MRI's of brain and c-spine and jaw, CT scan of sinuses, physical therapy evaluation by a VRT specialist, bloodwork up the wazoo, audiograms and tympanograms (hearing is normal and no detection of eustachian tube dysfunction), appointments with a neuro-otologist, and tons of different holistic health modalities.... BUT, so far, not one doctor or health practitioner has been able to properly diagnose me. By the way, my memory and cognitive ability are fine... so I don't have that kind of "brain fog". The kind of brain fog I get is an actual physical sensation of being totally drugged... and almost like I am looking at everything through a video camera lens. I am very medication sensitive, since I already feel drugged all the time, and it is such a horrible sensation... so I am not currently on any meds. When this first started 2 and 1/2 years ago, I was prescribed various benzos to help calm the dizzies, but I had very bad side effects from them, so I stopped taking them... I have been too afraid to try any other meds, due to my medication sensitivity, and the drugged feeling I have all the time anyway. My own conclusion, at best, is that I have uncompensated vestibular stuff going on, or MAV, and also TMJ stuff (I have had a lot of problems with TMJ, and it got really bad after the dizzies and drugged feeling began 2 and 1/2 years ago). But, can anyone here please tell me if they relate to the 24/7 feeling of being drugged and looking through a camera lens?? Can this terrible symptom be a part of uncompensated vestibular stuff, or MAV?

 
Old 07-12-2007, 11:20 AM   #3
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rachel4123 HB User
Re: New here... does this sound like MAV or VN or what?????

highdesert:
I have had the rocking swaying thing for 2.5 years too! It's a relief to hear someone else knows what the hell feels like.
I've been to all the drs...the first neuro said VN, the 2nd neuro said possible VN, but not sure. I have never had a definite dx. I think MAV is not really an actual disorder, so maybe they are hesitant to tell us that? I don't know. All is know is that this thing is still around. I have heavy anxiety and get shakiness, restless legs and muscle tightness. I have been thrown the MS word, so I worry about that...even though my tests don;t show it.
Do you have any vision problems? I get pains behind one eye...
It's such a weird bizarre thing. There is a lot of stuff written on the boards about MAV. Do a search and check out what others have to say.
Does yours get worse sometimes and not better?
Rachel

 
Old 07-12-2007, 12:16 PM   #4
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highdesert71 HB User
Re: New here... does this sound like MAV or VN or what?????

Rachel,
Hi. The vision stuff that I get with this are floaters that I can see all the time, and also, if I look into a well lit space ... like if I look at the sky during the day, I can see lots of little black specks that move/swirl in my field of vision (different from the floaters described above)... I also sometimes have vision that looks kind of smokey/hazy... and one eye sees brighter colors that the other - and then it'll switch to the other eye. I have had plenty of eye exams... and my vision is nearly perfect, and no other detectable problems when the eye doctor has examined me. I have a lot of light sensitivity... and I hate being in bright lights, flourescent lights, etc.. I also get really bad headaches everyday which oftentimes extend to my eyes as well, causing a lot of pain and pressure behind my eyes. In fact, right now my eyes feel a lot of pain, pressure... so the only thing I can do to calm that down is lay down and close my eyes for awhile. Do you have any of these eye things going on? Also, do you get that constant, 24/7 "drugged" feeling with the dizziness? And do you have a lot of fatigue from all of this?

 
Old 07-12-2007, 12:20 PM   #5
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highdesert71 HB User
Re: New here... does this sound like MAV or VN or what?????

Rachel, I forgot to answer your other question... about whether my condition gets sometimes worse, but never better. Yes, I would definitely say that I have had no improvements in this condition ever... I either feel terrible each day, or worse than terrible (if there is such a thing!! Geez!!). I mean, the terrible days are an improvement over the "worse than terrible" days, but I never have a let-up in my symptoms... I just always feel like hell, 24 hours a day, for the past 2.5 years. None of my symptoms have improved this whole time!! It's just not right, is it??!!

 
Old 07-12-2007, 02:52 PM   #6
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hbep HB Userhbep HB Userhbep HB User
Re: New here... does this sound like MAV or VN or what?????

Hello Highdesert,

I can't diagnose you as I'm not a doctor but I'd be willing to bet very large sums of money on you having migraine associated vertigo. I have migraine associated vertigo and everything you have experienced minus the black specks in your vision I have had. I know exactly what you mean by feeling trapped in your head. Another migraine sufferer and I refer to 'being John Malkovish' - don't know if you have seen that film - a man crawls inside John Malkovich's head and looks out from inside. I am also extemely light sensitive at times, although I am now on a migraine preventative which has afforded me long periods of normalicy.

My heart sometimes sinks at how rubbish doctors are at diagnosing this condition. I am extremely fortunate in that I go to a neurotology clinic where they are very up on it and know how to both recognise it and treat it. It is under diagnosed and a lot of people are left suffering for too long.

I appreciate and sympathise with your drug anxieties, but if you want to get well I would suggest you open your mind to the possibility to trialling different migraine drugs and finding one that works. I went through a few, I am hugely drug sensitive, but perservered and eventually hit on propranonol, a beta blocker with a low side effect profile that I can tolerate at a very low dose. If you are drug sensitive it is always advisable to insist on starting on an extremely low dose and titrating up. I did well on a dose of propranonol that drs scoffed at as they believed it was too low to be effective. It stopped my symptoms at that dose for over a year. It takes courage to try the drugs when you are sensitive to them, but for me it was a no brainer, I simply couldn't live like that anymore, so I gritted me teeth and trialled them until I found one that worked.

It's very hard to get people to believe they have MAV when they have seen countless doctors who are ignorant of it and don't diagnose it. But all I can say is it takes one to know one. Other sufferers often recognise it before a doctor does. I am also a clencher and suffer with some tmj type issues - this is a migraine trigger and the two conditions can feed off each other. However tmj won't bring on the type of vestibular symptoms you are describing.

YOu need to be your own advocate, research a doc in your area who is up on MAV, maybe a neurologist if you can find one. You need someone to try you out on different drugs.

I also changed my diet. I spotted things that triggered the problems and avoided them. A brilliant book to read on migraine is 'Heal Your Headache' by David Bucholz. You can get it online. He suggests a way of eliminating the problem through dietary changes. I found his rlimination diet too brutal to follow but if you hate drugs then you might want to give it a go. People often think diet plays no part as the impact can come on up to 48 hrs later, so they don't see the effect. I only realised over time that certain things would bring on severe symptoms - chocolate being a prime example. Recent studies have shown co enzyme Q10 at 300mg a day and vitamin B2 at 400mg a day to be effective as migraine preventatives. YOu have to stick with it and it can take a few months to work but they are less likely to have the side effects of drugs.

But as I said, for what its worth, I don't think you have VN, or if you do, you have migraine alongside it which is preventing you from compensating. Either way, you need to treat the migraine. People with VN aren't light sensitive in the way you describe, that is a migraine symptom. And the black dots in your vision that you describe are most likely a migraine aura. You are also experiencing constant headaches, you don't have to have headaches to have mav, but if you do alongside everything else it's a big indicator.

best,
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hbep

Last edited by hbep; 07-12-2007 at 02:55 PM.

 
Old 07-12-2007, 07:26 PM   #7
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Re: New here... does this sound like MAV or VN or what?????

Hbep... thank you so, so much for the awesome and well-informed reply. I really needed to read that!! Did your MAV come on after a very, very stressful period of time in your life? Or what were the circumstances in your life that preceeded the MAV? One thing that I forgot to mention was that, AFTER the 24/7 dizziness, 24/7 drugged feeling, 24/7 tinnitus, headaches, and other symptoms began, I had started to grind my teeth, and began experiencing worse headaches. A few weeks into this, I developed severe, excruciating trigeminal nerve pain... which was the most unbelievable pain... it was in my jaws and cheeks and would spread up into my temples.... and I couldn't eat, talk, sleep, nothing!! I was a total wreck. I ended up getting neural therapy injections (from a holistic doctor), inside my mouth, and it helped the pain significantly. It took my pain from a 10/10 down to a 4/10... and eventually, after several more neural therapy injection, the pain subsided mostly... but I still get TMJ pain/soreness.... but nothing close in comparison to the trigeminal nerve pain. Anyway, I am wondering if the trigeminal nerve stuff I experienced had something to do with the rest of my symptoms, or if it was just coincidental that it came on right after the dizzies, drugged feeling, tinnitus, headaches, etc.... As for trying something like the migraine preventative you are on... I may eventually break down and do that!! I cannot try any meds just yet because I am pregnant. Also, did you have that "drugged/trapped inside your head" feeling 24/7 and 365 days a year?? Or was it intermittent? Thank you again for your response. It is very helpful to me!!

 
Old 07-13-2007, 01:06 AM   #8
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hbep HB Userhbep HB Userhbep HB User
Re: New here... does this sound like MAV or VN or what?????

Hello,

Yes, that's exactly how this whole ordeal started. Some major work related stress, came on shortly after. Now, whenever I get relapses it is motmally after a very specific type of anxiety related stress - a lot of fearful feelings will do it - for example an interview type situation - or a painful and scary hospital test.

Again I have to stress I am a lay person so can only tell you what I think re the trigeminal nerve pain. In my experience, whenever I have an attack of dizzy/trapped in head/ light sensitive stuff - I start to clench my teeth like mad at night. My guess is that one condition triggered the other and then the two conditions feed off each other. You might find a doc who could see a direct connection btwn your dizzy symptoms and your neuraliga and/or tmj - namely they would think the latter was directly causing the former - but I doubt it. If that was the case every sufferer with trigeminal neuralgia - or many - would have vertigo. You do get some tmj sufferers who experience dizziness, but in my experience it's not vertigo and is more feeling a bit lightheaded. I don't believe from all I know and have read that tmj causes the type of dizziness we have. Obviously anything you can do to treat the tmj will help to stop it triggering the migraine. There is a sufferer on the board called Jen who also had MAV and tmj. Her neuro said what I am saying - it helps to treat it re the MAV but the tmj isn't causing the dizziness.

When I first got ill I felt the trapped inside head feeling for months on end. Now I only get it when I have a relapse - it can last up to seven to eight weeks at a time, but I am on medication that eventually controls the relapse again. People can get a very similiar feeling when they are anxious and suffering with depersonalisation. When I first got ill I think I had both going on as I was very scared and didn't know what the heck was wrong with me. But now it is definitely caused by the migraine. I am no longer anxious about my symptoms in that way, just fed up with them .

Jen has also had two pregnancies whilst dealing with this. She popped in the board recently. She had to stop taking the drugs which controlled her condition for that reason. I think she may have looked in to trying B2 and co enzyme Q10 as they are naturally occuring supplements. Obviously you would need to run this by a doctor as I know nothing about supplements taken during pregnancy. I would say definitely read 'Heal Your Headache' that I recommended, if only to understand better how migraine works - triggers - etc... He does a brilliant explanation that really opened my eyes to why I get worse at times, what's going on. It's relatively cheap and as I said you can just order it online.

best,
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hbep

Last edited by hbep; 07-13-2007 at 01:08 AM.

 
Old 07-16-2007, 07:38 PM   #9
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highdesert71 HB User
Re: New here... does this sound like MAV or VN or what?????

hbep, I am going to get that "heal your headaches" book. I checked it out from the library about a year ago, but never really followed the advice in it, because I wasn't really sure that I had migraines. But now it seems like that might be my problem. Does your MAV medication give you any bad side effects?

 
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