Anyone dizzy with jumpy vision 24/7?

Symptoms šŸŒ”
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1

Hi everyone, just got here. And I am wondering if there is ANYONE who is suffering as badly as I am here. My symptoms are 24 hours a day, 7 days a week without a SECOND of relief. Here are my symptoms:

  1. Feelings of ā€œunsteadinessā€, ā€œmovingā€ and ā€œrockingā€ 24 hours a day
  2. Stationary objects appear to shift left and right, up and down, randomly, 24 hours a day, 7 days a week. The appearance of this is worse if I am standing still, and completely disappears when I am driving. However, the moment I come to a complete stop, objects start to shift again. Now, as of recently, some objects appear to vibrate very quickly, and then stop. These visual sensations NEVER LEAVE!
  3. Intolerance to ā€œyes/noā€ and ā€œup/downā€ head motions 24 hours a day
  4. I can actually see my heart beating through my eyes in the form of flashes of light
  5. Light sensitivity that requires the use of sunglasses, even at night! Surroundings appear ā€œdreamyā€ or ā€œunrealā€.
  6. If I am in the bathroom, and strain a little while going, the room appears to go violently up and down for several hours and I am very unbalanced. So far, the ā€œval salva maneuverā€ is the only thing that actually noticeably worsens the condition other than head movements.
  7. Too much visual stimuli (watching too many people move, or being in a grocery store) makes things worse
  8. General intolerance to all motion
  9. Muscle twitches in arms and legs
  10. Feeling completely spaced out all the time
  11. Inability to focus my eyes clearly on one objects.

Thatā€™s about it. The most disturbing symptoms are the stationary objects moving, and the constant feeling of motion. Iā€™m a 32 yr old male with no history of balance problems. In case anyone is wondering, here are the tests I have had done:

  1. CT/MRI of brain with and without contrast = normal
  2. Brain mapping = low in serotonin and dopamine, high in acetacholine
  3. MRI of neck = slight buldging and deterioration of C5-C6, with reversal of normal curvature of the spine. No stenosis or spondylitis
  4. ENG/VNG testing for balance = normal
  5. Hearing and bone condition audio testing = normal
  6. VEMP testing for vestibular problems = normal
  7. CT of inner ears = normal
  8. Blood work including auto-immune antibodies, thyroid, hormones, metals, vitamins, allergies, and diseases = Low Vitamin D, high alluminum, allergy to gluten and cowā€™s milk. Nothing that really stands out
  9. Tested by the top doctor at Johns Hopkins for vestibular problems and inner ear problems were ruled out. Tests for nystagmus were normal
  10. Opthamology and Neuro-opthamology testing performed = all normal. Slightly buldging optic nerves but no bluring of the disk margines, no optic neuritis or papeledemia
  11. Nuerological exams by 2 neurologists were normal, including the MEVP (Myo-evoked visual potentials) test which tests for MS and other neurological conditions
  12. DEXA SCAN = showed stage 3 osteoporosis to my surprise
  13. Transcranial, Carotid artery ultrasound = Normal
  14. Abdominal Ultrasound and Heart Ultrasound = slight mitrovalve stickness. Nothing major
  15. Thyroid ultrasound = found nodules, doing a watch and see approach, and taking iodine

The doctors at Johns hopkins have ordered the following tests to rule out any problems with the vertebral arteries or spine. I havenā€™t had these tests yet but these are the last tests:

  1. MRI of brain with pseudotumor cerebri protocol
  2. MRA (angiogram) of the arteries in the neck
  3. MRA (angiogram) of the arteries in the brain
  4. MRI of inner ears to look for blood flow problems
  5. CT scan of entire spine to look for lesions, spinal chord problems, other

So, as you can see, I have LITERALLY had every test you can imagine. And the funny thing is, I have only displayed symptoms since January 24th 2008. But I am one of those people who gets paranoid about the smallest thing, so I wanted to check EVERYTHING, as I have 2 small kids and a wife to think of, and I am not about to let something major happen to me. Anyway, after all that hoopla, the diagnosis, at this time, is either MAV or Mal De Embark syndrome. Or perhaps both. Some other interesting things were found, but who knows what the relationship is. Anyway, I am just wondering if anyone else here actually suffers from the dizziness and vision problems 24 hours a day like I do, and if so, what are you doing about it! So far, I am just taking a diuretic as I feel pressure in my head and ears, and Iā€™m taking some xanax for anxiety. I have to say that Klonopin seemed to help the feelings of motion, but it made me feel very unambitious and slightly depressed. Also made me very nasty. Tried depakote which made me VERY dizzy, and Neurotin made me exhausted, and did absolutely nothing. Iā€™m really freaked out, and the symptoms have slowly gotten worse over this 2 1/2 month period. Thanks for listening

Rich

1 Like
2

I quoted the ones I have.

"My symptoms are 24 hours a day, 7 days a week without a SECOND of relief. Here are my symptoms:

  1. Feelings of ā€œunsteadinessā€, ā€œmovingā€ and ā€œrockingā€ 24 hours a day
  2. Stationary objects appear to shift left and right, up and down, randomly, 24 hours a day, 7 days a week. The appearance of this is worse if I am standing still, and completely disappears when I am driving. However, the moment I come to a complete stop, objects start to shift again. Now, as of recently, some objects appear to vibrate very quickly, and then stop. These visual sensations NEVER LEAVE! Same, but I donā€™t know about driving since I canā€™t get out!
  3. Intolerance to ā€œyes/noā€ and ā€œup/downā€ head motions 24 hours a day
  4. I can actually see my heart beating through my eyes in the form of flashes of light - not really, but I do have some flashing lights here and there quite often
  5. Too much visual stimuli (watching too many people move, or being in a grocery store) makes things worse VERY much so. Visual stimuli as in brushing my teeth (head moves), or seeing a leaf blowing through the window, ā€¦
  6. General intolerance to all motion
  7. Muscle twitches in arms and legs
  8. Feeling completely spaced out all the time
  9. Inability to focus my eyes clearly on one objects. Only sometimes."

As you can see, I have most of your symptoms as well. No diagnosis, but the description of MAV fits me soo well, and Iā€™m being treated for it, so I hope itā€™s right!

3

But are your symptoms 24/7 and never leave? Thatā€™s what I am trying to establish. I see that many others here DO have these symptoms, but I am wondering if they are permenant the way they are with me.

Is your treatment working? What are you doing?

Rich

4

ā€” Begin quote from ā€œRich1975ā€

But are your symptoms 24/7 and never leave? Thatā€™s what I am trying to establish. I see that many others here DO have these symptoms, but I am wondering if they are permenant the way they are with me.

Is your treatment working? What are you doing?

Rich

ā€” End quote

Yes, they are every single second and has been since mid-last year. The wobbling is on and off, but the extreme visual sensitivity has never let up the least :frowning:
Iā€™m on amytriptyline, 10mg. Very little help so far, but the dose is still tiny. I need to find a proper doc to help me out with this; I talked about this with my GP and he agreed to try amitriptyline, but the little I know about this condition is a lot more than he knows. Not good; a doctor should know more than his patients about what weā€™re treating!

Quite a few of ā€œus hereā€ seem to have 24/7 symptoms actually. When I first found this place I asked pretty much the same thingā€¦ :slight_smile:

5

This is INSANE!! Such symptoms should NOT be possible!! I am going to Johns Hopkins to be treated, and have already seen their head of inner ear department. He said itā€™s not inner ear, and diagnosed me with MAV. So now, as mentioned, heā€™s ordering one last group of tests just to cover all bases but he believes they will all be negative. At that point, MAV or some variant of it, seems the most likely senerio. At that point, heā€™s sending me to their top migraine guy so weā€™ll see what happens. This is very discouraging to read that many have been suffering with 24/7 symptoms for YEARS!!! I canā€™t imagine that. Thatā€™s unacceptable!!

Rich

6

Rich,
It sounds like youā€™ve had quite the work up. I hope they are treating your osteoporosis, and looking into why it has happened. Believe me, we all have periods of terrible frustration. We stump the doctors, and so they rule out everything, and send you on. This is a diagnosis that is in its infancy. If you can, read Dr. Hainā€™s site, and the eMedicine article. Both discuss people who have this for years.
It is unacceptable, on many levels.
Hopefully the migraine people at Johns Hopkins can help youā€“ironically they post a page about vestibular migraine on their balance center website:
hopkinsneuro.org/vestibular/ ā€¦ r_Migraine

I get frustrated and scared and angry too. Hard not to. But, despite physicians who have disappointed and many who are uninformed and all of the impacts on my life, I have improvedā€“and relapsedā€“but there is hope, even if it doesnā€™t feel like it right now.
Kira

7

As I re-read the Johns Hopkins web page, this is their final paragraph:

As with all chronic or unpredictable vestibular disorders, attention to the psychological consequences of the disorder is necessary with appropriate medications and consultations. For almost all patients, the proper combination of diet, exercise and drug treatment (if necessary) will lead to good relief of symptoms and return of a normal lifestyle.

They talk the talkā€¦
Kira

8

Thanks for the response guys! Iā€™m having a heck of a time dealing with this. Fortunately, I am seeking help at Johns Hopkins so hopefully they can get me on the right path. I have read sucess stories of people getting back to 100% so Iā€™m hopeful. Iā€™d take 90-95% over this!!! Iā€™m at about 50% if Iā€™m lucky. Itā€™s horrible!

Rich

9

Rich,

I have all of your symptoms except the worsening with Valsalva. When my symptoms were less severe, they would stop while driving, but I can no longer drive. And yes, it is 24/7.

I used to think this was impossible and that I must be dying. I said to my husband, maybe once a day, last summer, ā€œnobody can be this dizzy and still exist.ā€ I truly thought I was dying. I still have many days when I just canā€™t believe it, or feel personally persecuted and then I remember the others on this forum, some who have suffered worse, and longer than I have.

You are lucky to be close enough to Hopkins to get treated there. Good luck with your treatment and keep in mind - this forum is filled with people who are still having problems. Hopkins claims to have successfully treated thousands of patients -theyā€™ve probably just gone on with their lives.

Be well,

Julie

P.S. Neurontin and Klonopin both made me tired in the beginning, but that all went away. Iā€™m still taking both, along with Zoloft. All told, I have to admit to possibly 50% improvement - but I was virtually bedridden; now Iā€™m just housebound.

10

Youā€™ve got to be kidding me Julie!!! I donā€™t understand how you could have been suffering this long, with moderate symptoms at first, and couldnā€™t seem to get the symptoms under control with any kind of medication. Thatā€™s unacceptable as far as I am concerned!! Now you are housebound, and the doctors have nothing to offer except ā€œmore of the sameā€??

Just out of curiosity, how long have you been suffering with this, and how long were you having symptoms before you sought treatment?? I hope you are still persuing new treatment options as I could not live with 50% capacity AFTER treatment! I am living with about 50% capacity BEFORE treatment, and I have only been dealing with the symptoms for 2 1/2 months. At first, they were much worse. Then, at around the 3-4 week mark, some symptoms improved again, and then I started to go back downhill again.

Iā€™m angry because I was PERFECT!!! And then I woke up one day, and WHAM!!! It was here, and never left. To me, that suggests some sort of ā€œeventā€ or major change in brain chemistry, virtually overnight! I could run for miles, lift heavy objects, work out in the hot sun all day, and still have the energy to party at night. Now, Iā€™m lucky if I last 1 hour just moving around the house, before I am so exhausted, that I have to sleep 4 hours just to recoop. I can no longer do any sports, anything that requires ā€œstrainingā€, pretty much anything thatā€™s worth doing in life. Iā€™m freakā€™n miserable and Iā€™m more PISSED OFF than anything else!!! Something like this should not be possible!! For a couple weeks? Fine. The result of a little bit of stress?? fine. But a permanent change that virtually affects every facet of life?? I will NOT accept that! One way or another, I will beat this miserable piece of crap illness. I donā€™t mind the rocking sensation. But if I could just get rid of the appearance that all objects are moving around all over the place, Iā€™d be up around 65-70% at that point. Itā€™s the most disturbing thing I have EVER experienced, and I have to live this freakā€™n nightmare 24/7. I think a few doctors and scientists have to be struck down with this thing before they get up off their asses and do a little research into the cause of this. I mean, they can practically cure most cancers at this point, if caught early enough, but they canā€™t yet balance brain chemistry?? Leave it to us to get the condition that nobody knows anything about. Thatā€™s MY luck for ya!

Rich

11

Poor Rich

Youā€™ve really got it big time havenā€™t you? Unfortunately, so have all of us on this board. Iā€™ve had it for two years now (26 March 06 approx), still canā€™t work. Used to be a bit of a gym guru, swimming, walking etc etc but no longer. Iā€™m so fatigued, just walking slowly is a struggle. I go to the gym circuit class twice a week, but have had to join the ā€˜seniorsā€™ class and canā€™t push myself, just pace myself as best I can. Iā€™ve improved to the point that Iā€™m no longer house-bound but my life is quite insular these days and extremely limited. The only way to remain positive in this frustrating situation is to know that youā€™re on the right track with your diagnosis; know that you have a great specialist (neuro, neuro-oto) that you can believe in; and hop on the hirdy-girdy of medication trials for migraine with the hope that one or perhaps, a combo of meds - will start to settle the symptoms down. My neuro always sais to me that heā€™s treating the migraine!!! and that once that moves into line, then all the symptoms will do the same thing! One other thing, my neuro reckons heā€™s treated thousands of migraine patients and hundreds and hundreds of people with MAV, and eventually, he believes that one day (when is the big question of course!), it will eventually lift. I hold onto that thought every waking day of my life and that is exactly what gives me hope! Hang in there, I can really feel your pain and frustrationā€¦my neuro also said to meā€¦ā€œDo what you can, when you can and donā€™t push it, just go with the flow, it will eventually resolve itselfā€. Thatā€™s not always what we want to hear I know, but Iā€™m afraid Iā€™d go insane if I didnā€™t try and grab hold of a little bit of positive thought!
best wishes and much improvement coming your way, Judy :stuck_out_tongue:

1 Like
12

Rich,
Itā€™s not fair, but itā€™s real. I had some issues for years after a virus that destroyed much of my left ear, then swung my head in a yoga class in 2003, and ended up on the floor with spinning vertigo. And life hasnā€™t been the same since.
Itā€™s not for lack of trying that we donā€™t improve, we have a chronic condition.
And, the vestibular apparatus canā€™t even be imaged, so all diagnoses are really inferential.
Anger and frustration are only natural when your life is radically altered, abruptly.
Re: valsalvaā€“itā€™s a known migraine trigger. My younger daughter has classic MAV, well controlled now on notriptyline, but only after some really horrible times, that included hospitalizations and many experts who were clueless. She played the saxophone, and I would bring up the valsalva and the noise, and one neurologist was concerned, but wouldnā€™t advise her not to play. Once she started college, the sax hasnā€™t been touched, and sheā€™s much, much better.
All of us are doing the best we can, and weā€™ve all suffered here.
Look, Iā€™ve had people tell me that at least you donā€™t have some life threatening conditionā€“my first neuro-otologist said that vertigo was, in his opinion, the worst symptom one could experience that wasnā€™t life threatening. Itā€™s life altering.
No one here is saying to accept this passivelyā€”
Kira

13

Rich,

As I read your last post to me, Iā€™m remembering how it was for me in the beginning, when i got hit with this monster. I, too was mad as hell and counting the weeks. ā€œIā€™ve been dizzy for 6 weeks!!!ā€ then the months. I stopped counting when it hit a year. And I think my anger turned into resignation/frustration/helplessness and hopelessness. When I thought I was dying, I also actually hoped that I was, because I also felt ā€œI cannot live with this.ā€ At my worst, and I donā€™t want to describe how bad it was, because itā€™s too painful, but now that I do think about it, I have to say that Iā€™m at least 50% better, but still housebound. anyway, at my worst, and when I figured out i wasnā€™t dying, I looked suicide in the face. I decided against it and realized that the truth is, I can live with this, and do. Then I found that there were others with this freaky illness, and ways to be treated. I owe much of my healing to the people in this forum alone.

I used to be a ballet dancer and a dressage rider. I used to be an avid reader. I used to have a great physical relationship with my husband.

To answer some of your questions - the rocking and swaying did come on slowly over some years but seemed to be related to allergies, or post viral. I mentioned it to some docs, but they were not impressed. I wasnā€™t having any trouble with balance - I was still dancing. In fact, I felt better when I was dancing.

Then I got hit with my ā€œbig crashā€ as many call it. Dizzy beyond belief. I went to see an ENT who told me that it was probably post viral, there was nothing to be done and ā€œhopefully it would go away.ā€ She gave me a few Valium in case I needed them and sent me for an MRI, just in case. MRI normal - case closed.

I went to see a naturopath, why not? In the middle of her exam, she looked at me, puzzled - ā€œis this a migraine?!ā€ I started crying. In my gut, I knew that somehow, all this dizziness was actually migraine related, but i had never heard of such a thing. She gave me some Imitrex and suggested I try conium, a homeopathic med. I ditched the Imitrex - didnā€™t want to go down that road. I tried the conium and it helped a lot but only for about 20 minutes before I needed another dose. I read more about homeopathy and decided to see a homeopath, why not? She treated me with great success. In fact, i never felt better in my life, until she ODā€™d me. Since then, Iā€™ve been 100 times, if not more, worse than before I went to see her.

From my ā€œbig crashā€ to the present, it has been five years. Iā€™ve been under medical treatment for 8 months.

I found this forum and figured out that this was in fact MAV. It took me awhile to figure out how to get out to even see a doc - 20 mg of Valium made it tolerable. I went from one doc to the next, each one looking at me like I was a freak. Got a ton of neurologic tests done - all normal. I finally got referred to a neuro-oto who trained at Hopkins, with Hain. He knew within 5 minutes that this was MAV. He didnā€™t even ask me for an ENG - the only test I havenā€™t had done. He started me on Zoloft and I started improving immediately, and so on and so on.

Although I carry some hope of finding the right med for me, I believe this is a chronic illness that I will continue to learn to live with for the rest of my days. I guess there are many who get ā€œcuredā€ but I also know there are many who relapse.

I was passionate about the things I used to do and I miss them, but I would have had to quit them someday anyway. We are only here for a moment and on my deathbed, Iā€™m not going to be wishing I had done one more piroutte. Iā€™m going to be hoping there is no dizziness in heaven :slight_smile:

Hang in there Rich, be mad, be shocked, cause this illness IS incredible, isnā€™t it? But be lucky to be in such great hands at Hopkins. Do the diet they advise, it does help.

All the best,

Julie

14

Thanks Julie!! There is a diet that they recommend for this??? is there somewhere I can read about it?? Iā€™m waiting for them to get back to me with my appointment to see their top MAV guy but in the meantime, I have nothing, and I mean absolutely nothing to help me. Iā€™m just sitting around with the symptoms. And every couple days, the symptoms just start to get more and more out of control.

And thanks to everyone else who responded. My life was EXTREMELY active, and I was always on the go. Always in good spirits, always had something to do or someone to see. And now, Iā€™m practically bed-ridden. And it happened overnight, not over time, which is even more shocking and frustrating for me. I cannot believe that I am going to deal with this for the rest of my life. I donā€™t believe that because I donā€™t believe that this is a ā€œnewā€ illness that somehow, we all got within the past 10 years. What I DO believe, is that this is simply a new DIAGNOSIS. And people have probably gone undiagnosed with this condition for years. The question remains, how does the course of the condition usually go?? If some believe that eventually it burns itself out, this information has to be based on some sort of evidence of this. Iā€™m going to start another post that I think will be quite revealing. Iā€™d like to see how long everyone on the forum has been suffering with symptoms of their MAV. Iā€™d be willing to bet that most people here have been having MAJOR symptoms for perhaps 5-10 years at max. And this could vary depending on how the symptoms came on, when help was sought, which medicines were used and so on. Perhaps if the time frame is all similar, it leaves hope that after a certain amount of time, it just burns out. If we have quite a few 20+ year people here, well, that would be discouraging, but I donā€™t think the majority of people are going to be in that class. And hopefully, within the next few years, doctor will learn more about brain chemistry to finally figure this miserable piece of crap out!! Thanks

Rich

15

Rich,

it would be well worth your while to get your hands on ā€œheal your headacheā€ by David Buchholz (donā€™t be put off by the word headache in the title). He used to be at Hopkins and may have trained the guys you will be seeing. Iā€™m real surprised nobody there has mentioned this to you yet. I never even got as far as making an appointment before they were suggesting I get the book and get on the diet. Not only does the book explain whatā€™s going on in your brain, in an elementary way, but it gives you a diet to follow, as well as a basic description of meds that are used. It was a starting point for me, in understanding, followed by the articles Adam has posted on this site. Barbara Gottschalk (sp?), one of the assistants in the neuro-oto dept emailed me a short version of the diet for me to get started on until my book arrived. Are you seeing Carey next? How long is your wait?

When you say that every couple of days your symptoms get more and more out of control, that you feel that you are on a downhill course? Thatā€™s what happened to me - week by week I was noticably much worse and there was nothing I could do to stop it. Benzo was the only thing that helped and thank god for that.

Keep us posted on your course, and your Hopkins experience.

Julie

16

ā€œHeal Your Headacheā€ is probably the gold standard handbook for this disease. My wife bought it for me several months ago, and itā€™s definitely a catalyst in improvement.

17

I also have the book and try to follow the dietā€“and it has helped. I emailed Buccholz, and he emailed back (although I donā€™t think heā€™s in clinical practice still) and I asked if I really had to give up the caffeine, and he strongly recommended it. I just canā€™t give up that one cup in the morning. But everything else has been easyā€“you have to watch in restaurants, because onions are everywhere.
There is a low tyramine diet on the NHF website, that comes from the Diamond Clinic, and it has similarities and differences. Buccholz admits that this diet is entirely based on his clinical experience. Actually there was a study that proclaimed that no migraine food triggers exist, and he said they are impossible to do, as you can never control all the variables.
I really liked his explanations of migraine, and he talks about vertigo.
Hereā€™s the link to the National Headache Foundation diet site, the pdf download of the complete diet is at the bottom of the page. I found it interesting to compare to Buccholz.
headaches.org/education/Head ā€¦ he_-_Foods

I was reading a VEDA newsletter about superior canal dehiscenseā€“and it comes on suddenly, and can cause some of the symptoms you talk about. Hereā€™s info from Dr. Hainā€™s site:
tchain.com/otoneurology/treatment/surg.html
tchain.com/otoneurology/diso ā€¦ stula.html

ā€œThe symptoms of perilymph fistula may include dizziness, vertigo, imbalance, nausea, and vomiting. Usually however, patients report an unsteadiness which increases with activity and which is relieved by rest. Some people experience ringing or fullness in the ears, and many notice a hearing loss. Some people with fistulas find that their symptoms get worse with coughing, sneezing, or blowing their noses, as well as with exertion and activity. This sort of symptom goes under the general rubric of ā€œValsalva induced dizzinessā€, and it can also be associated with other medical conditions in entirely different categories --for example, the Chiari malformation, and a heart condition called ā€œIHSSā€. Returning to fistula, it is not unusual to notice that use of ones own voice or a musical instrument will cause dizziness (this is called the ā€œTullioā€™s phenomenonā€).ā€

Like everything else with dizziness, itā€™s diagnosis and treatment are controversial. Just more info to throw out there,
Hope you get some answers and treatment and relief soon.
Kira

18

Kira, you are an absolute wealth of information - thanks for the links, very interesting.

One more thing regarding the diet. I also find it easy to follow, especially because I love to cook, so this challenges my creativity. I know that this is common knowlege to many people, but I had no idea - MSG is everywhere! If you get the book, pay close attention to code words for MSG. It really hit me one day when I was taking my meds - theyā€™re all capsules, made of gelatin = MSG. I probably get a full dose of MSG in those capsules alone.

End result, my diet is healthier than before I got sick.

To be continued, Iā€™m sure,

Julie

19

Richā€¦iā€™m sorry you are going thru a difficult time with these horrible symptoms. I have been dealing with this dizzy monster for 20 yrs and i have improved someā€¦but the symptoms and still bothersome and can only work part-time. Here are my answers to your questionsā€¦

  1. Yesā€¦i have feeling of unsteadiness and rocking 24 hours a day. Anti-anxiety medication helps to keep me more stationary. I feel as though i am moving/rocking not the world around me.

  2. Againā€¦things around me are not movingā€¦i feel motion like iā€™m on a boat. Much of the motion is felt inside my headā€¦with thobbing and tensionā€¦which is similar to a Silent Migraine. When standing still it is more noticeable. When driving a car itā€™s less noticeable. For meā€¦objects do not vibrate.

  3. Yesā€¦i am intolerant to yes/no and up/down head motion 24 hrs a day.

  4. Noā€¦i donā€™t experience the heart beating thru eyesā€¦but it sometimes feels like my heart is in my head. The throbbing feeling like a headache (without pain except Tension).

  5. Light sensitivity not a big problemā€¦but if i am experieancing lots of brain fog then it feels dreamy or unreal.

  6. In the bathroom strainingā€¦No that does not happen to me. But if i am backed up for a day or twoā€¦i find that my symptoms increase to a point like iā€™m deep sea fising.

  7. Visual stimula bothers me tooā€¦big time! For the most part i stay away from intension fast action films. Noise and crowds bother me in stores. Light sensitivity not as much.

  8. General intolerance to all motionā€¦YES!

  9. Noā€¦i donā€™t have any issues with muscle twitching

  10. Not so much spaced outā€¦but brain fog can be overwhelming at timesā€¦particularly if i donā€™t get enough sleep and going to bed each night at different times. I need to get ready for bed at the same time each night. The brain fog use to worse a number of years backā€¦so i have made some improvement in that area. Also much less Vertigo episodes.

  11. Noā€¦i donā€™t have much problems with focusing on one object.

We are all different so canā€™t expect that our symptoms will all be the same. By the wayā€¦i have never outgrown Motion Sickness all my life. Most people doā€¦but a small percentage do not. As a child i would get car sick driving thru curvey mountains, or carnival rides that went in circlesā€¦or fishing on a boat would be difficult. I will never in my life time ever go on a Cruise Ship. Even before this dizzy monster i knew i would never attempt a cruise ship experience. My luck would be that i would puke my guts out and have to deal with it. No cruise ship is going to turn around and go back just because a person is suffering from motion sickness. Now a heart attack is another matter. Want to reiterateā€¦i feel like iā€™m feeling Motion/Moving instead of the world around me moving.

Thanks for asking these great questions. I appreciate your honesty!

Joe

  1. Feelings of ā€œunsteadinessā€, ā€œmovingā€ and ā€œrockingā€ 24 hours a day
  2. Stationary objects appear to shift left and right, up and down, randomly, 24 hours a day, 7 days a week. The appearance of this is worse if I am standing still, and completely disappears when I am driving. However, the moment I come to a complete stop, objects start to shift again. Now, as of recently, some objects appear to vibrate very quickly, and then stop. These visual sensations NEVER LEAVE!
  3. Intolerance to ā€œyes/noā€ and ā€œup/downā€ head motions 24 hours a day
  4. I can actually see my heart beating through my eyes in the form of flashes of light
  5. Light sensitivity that requires the use of sunglasses, even at night! Surroundings appear ā€œdreamyā€ or ā€œunrealā€.
  6. If I am in the bathroom, and strain a little while going, the room appears to go violently up and down for several hours and I am very unbalanced. So far, the ā€œval salva maneuverā€ is the only thing that actually noticeably worsens the condition other than head movements.
  7. Too much visual stimuli (watching too many people move, or being in a grocery store) makes things worse
  8. General intolerance to all motion
  9. Muscle twitches in arms and legs
  10. Feeling completely spaced out all the time
  11. Inability to focus my eyes clearly on one objects.

Thatā€™s about it. The most disturbing symptoms are the stationary objects moving, and the constant feeling of motion. Iā€™m a 32 yr old male with no history of balance problems. In case anyone is wondering, here are the tests I have had done:

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Thanks Kira. I actually saw Dr. Minor at JH, who discovered Superior Canal Dehisence. It was thought that I might have this, but testing showed I do not.

Joe, your symptoms sound like Mal Disembarkment syndrome. Or am I confusing MAV with Mal Disembarkment?? MD usually has the rocking and swaying sensations yes?? Iā€™m still all new to this lol. I just hope that I donā€™t have to learn for too long! Iā€™d like to have all this behind me!

Rich