Anyone dizzy with jumpy vision 24/7?

Rich,

I made a small goof. I meant i have had this dizzy condition (soone as it went chronic) for 15 years rather than 20. I was diagnosed by one of the best doctors aroundā€¦at UCLAā€¦Dr. Robert Baloh. Even though Mal de debarquement has some similarities to MAVā€¦ the folks who have Mal de debarquement ususually feel like the world is rocking rather than themselves. Alsoā€¦this Mal de debarquement most likely comes on after being on a Cruise or long Plane flight. That does not apply to me. Itā€™s is a rarity for it to come on out of the blue. My condition started out with with occasional Vertigo episodes (about 2 a year- always waking up from sleep at night) and i would get horribly sick and vomit. But i within 3 days i would feel back to normal. After 3 years of this routineā€¦i had another nighttime vertigo episode which was even more severe. I had to literally crawl to the bathroom. After vomitting intenselyā€¦i walked over to the couchā€¦sat down for about an hour and did not move. Then out of the blue i began to feel the rocking motion sensation. So that is when it started into a chronic condition and was diagnosed with Panic Disorder (1992). In 2006 i was diagnosed with Migraine Equivalent.

One more thingā€¦the vertigo episodes i began to occasionaly have were i believe stress related. I was having an extremely stressful time at work. So i believe Stress was a possible trigger. MAV, Mal de debarquement, and Anxiety disorders are Cousins of one anotherā€¦or atleast that is what Dr. Baloh from UCLA told me.

Joe

I have both MAV and mal de disembarkment. Thereā€™s a lot of dizzy experts who feel they are linked, and personally, Iā€™d agree. For years before my big crash, Iā€™d be bouncing all summer after I sailed, and elevators were always an issue.

I posted on another thread about how concentration/multi-tasking/stress will worsen balanceā€“itā€™s been proven that if you ask a dizzy person to stand up in a challenging position (tandem gait) they can hold the position until theyā€™re given a second task that requires concentrationā€“then they fall over.
We need a lot of concentration to maintain our balance, and there is only so much to go around.

Some psychiatrists call MAV=MARD, which amounts to migraine associated anxiety and dizziness. Theyā€™re linked.

Rich, I think the article I read was written by Dr. Carey at JHā€™s.

This is such a frustrating condition. For myself, Iā€™ve had issues since a virus in 1975ā€“but it didnā€™t interfere with my life until a bad bout of BPPV in 2003. So, itā€™s a long term issue and a shorter term one as well. I had improved considerably, then had a set back a few weeks agoā€“very disheartening. Iā€™m currently in the position of negotiating shorter hours at work, and that stinks big time (none of us like to think of ourselves as disabled.)

Kira

Hi Rich-

I agree with Julie. Get the book ā€œHeal your Headacheā€. Do the diet. In my opinion, its critical to do as much as you can for yourself right now, it will help save your sanity. The worst part of this condition (if you ask me) is the feeling of having no control over anything. Youā€™re completely normal one day, and totally messed up the next! The Headache Diet was a life-saver for me. Of course, it wasnā€™t a cure-all, but it did make me realize that Msg is a major trigger, as long as I avoid it, I do pretty well. (80 - 90% most of the time, as opposed to symptoms 24/7 two years ago.)

Its hard not to become frustrated, weā€™ve all been there. Its one day at a time.

Iā€™m not one who believes this thing just ā€œburns itself outā€. I believe we just find our own ways of dealing with it (meds, diet, etc.). The condition may wax and wane, but I donā€™t believe we are ever completely free of it. (I was diagnosed with panick attacks in my early 20ā€™s. They werenā€™t panic attacks, they were Migraines. Through the years, they have evolved to ā€œlookā€ more like migraines. After 20 years, I was diagnosed with MAV because of the vertigo, the visual disturbances, and the occasional headache I end up with. Finally, someone recognized it.

Hang in there, make use of this board. There is alot of good info here, and a lot of good people willing to share. Donā€™t give up.

Rich,

What you describe for your symptoms match what I was experiencing at my peak before I got an accurate diagnoses and started the right treatment plan. Yes, my symptoms were 24/7. I only experienced things jumping around occasionally with the more severe dizzy spells.

You mentioned a couple of things that jump out at me. In your testing you said that the MRI of your neck showed a couple of compressed vertabrae, and a gluten alergy. First, compressed neck vertabrae can cause something called cervical migraines, which can also cause vertigo. Second, gluten alergies can cause all sorts of problems including vertigo. While you are waiting to visit your doctors, you may want to do some research on these and see if anything sounds similar to what you are experiencing.

I would like to second the opinion that this conditionā€“actually set of conditions that cause vestibular disorders-- do not burn themselves out. We adapt. After a rough day at work, I remembered that when the episode of BPPV put me into a horrible state in 2003, I later read a NE Journal of Medicine article about treating vestibular neuritis with either prednisone and/or anti-virals. Prednisone reduced residual symptoms. There was an editorial by a neurologist, entitled Driving Dizzily through Donegal and here are the first two paragraphs:

"Ten years ago, while touring the west coast of Ireland, I had a sudden onset of vertigo without hearing loss, tinnitus, or fullness in an ear. As a neurologist, I did entertain fleeting dark thoughts of a fatal basilar occlusion or brain-stem tumor. But without accompanying neurologic symptoms, the obvious diagnosis was vestibular neuritis ā€” a disorder then thought to have a ā€œviralā€ cause and a benign course. Therefore, I took no medications, abdicated the driving to my wife, and leaned back for several days of unsteadiness. I had full confidence that central compensation would allow for my rapid adaptation to even complete vestibular paresis. I was wrong about the natural course of the disease, and I may have been wrong about the treatment.

Old textbooks incorrectly stated that the symptoms of vestibular neuritis resolve within a few days or weeks. Rapid central compensation or peripheral recovery does occur and is sufficient to cause patients to stop complaining to their doctors. But when asked directly about residual symptoms months or even years later, more than half of patients report minor symptoms such as vertigo with sudden movement of the head, imbalance in the dark, or as in my case, inability to walk across a log spanning a moving stream."

Volume 351:322-323 July 22, 2004 Number 4

I always found that editorial validating. We may not complain, but we have symptoms.
Kira

I wrote a bit of a rough post here last night, afte being extremely dizzy all day. Iā€™m deleting it because it is not worth keeping, and does not speak how i truely feel. Surfice it to say that I am committed to a 100% recovery, which I believe is possible. Thanks to everyone for all the great info
Rich

In reply to Kiraā€™s post - thatā€™s exactly what I did during the time my symptoms were more tolerable. I was told there was nothing to do by my docs, and I was able to get by in life without so much limitation that it was distressing me, so I quit complaining about it. So when this big crash happened, and I reported to my docs having been dizzy for so many years, they said they had no idea, why didnā€™t I tell them. I had to remind them of the entire story.

ā€” Begin quote from ā€œRich1975ā€

Sorry everyone, but I cannot believe that this is going to be with me for life. Sorry, NOT happenā€™n!

ā€” End quote

Thatā€™s a real good attitude that will help more than anything else.

Hey Brian, you managed to snag that quote from my post before I deleted it lol. I agree, and I canā€™t think any other way. I think I got a little off base in the post though, so decided to delete the whole thing. Still, I do not believe this is an ā€œillnessā€ perse. This is not something that is ā€œcaughtā€, or something that is associated simply with the aging process (aging process = deterioration = illness) or something that can be measured or tested for like ā€œdiabetesā€, ā€œheart diseaseā€, or ā€œcancerā€. There are many ā€œsyndromesā€ that exist today, from chronic fatigue, to fibromyalgia, and I personally believe that MAV and MDS are both ā€œsyndromesā€ in the respect that they result from imbalances somewhere in the central nervous system. I do not find it surprising that anxiety and panic are associated with these disorders, and I am even less surprised that anti anxiety drugs are used to treat them to a large degree. So from that perspective, I cannot find one shred of evidence that this must be a life long process to any degree. Sure, someone might be genetically suseptible to these syndromes, but nutrition, stress reduction, sleep/exercise, adequate sunshine (for vitamin D and serotonin), and balancing brain chemistry can absolutely keep genetic situations from coming out. This is shown in other areas of science, so I see no reason it should not be applied here as well.

Imbalances are often the first step in a ā€œdiseaseā€ process, but not in itself a disease. If corrected, the body heals and health can resume. In a late stage disease process, this is very difficult. itā€™s like trying to treat cancer once it has spread to many organs. Itā€™s much easier to deal with when it is a speck in one organ. fortunately, even people suffering with these syndromes for 20+ years can be helped, and thatā€™s evident here. 20 years is MORE than enough time for a disease to manifest after initial symptoms have come about, but even in these situations, 20+ years later, no disease process can be found. No deterioration, no neurological deficits. Seems that the brain can handle quite a bit of abuse. I think itā€™s possible that people suffer so long for a few different reasons. One, the underlying cause is not being addressed and the medications being given only masks the symptoms (topamax for relieving the headaches for example. But topamax does nothing to fix the altered brain chemistry that is causing the condition in the first place). Another reason I think it takes so long to recover is the emotional distress that these conditions cause. Itā€™s like a viscous cycle. Altered brain chemistry causes the symptoms which causes more anxiety and distress which worsens brain chemistry and round and round we go. These conditions often go away in women once hormones are balanced. But, for men, it seems to be a different trigger. I was tested and found that my vitamin D level is nearing 0. I have osteoporosis which I am not surprised about but perhaps this is lowering my serotonin so badly, that the condition can manifest. Iā€™m wondering if other men here have been tested for low vitamin D. Just a thought. Anyway, my point is, I do believe brain chemistry can be balanced, and even if not balanced 100%, I think that once the right building blocks are in place, and medication/supplements/stress reduction/relaxation techniques/good sleep and exercise are in place, that the brain can balance the additional 10-20% missing that the above modalities could not handle. The body WANTS to be balanced. So if we can get even 80% of the way with help, I believe the brain will do the other 20% on its own. Thatā€™s my own personal belief and I am definitely going to get well. Itā€™s just a matter of time. Those are my thoughts

Rich

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What did the MRA of your neck show? Iā€™m about to get a neck CTA too.

What did the MRA of your neck show?