Failure To Navigate Pathways/make Navigation Decisions

[Angela]

failure to navigate pathways/make navigation decisions.....i saw in peregrines info that this is an issue. I have had this since childhood, i tend to walk into people instead of alongside them. I am left handed and tend to walk into people on the right if that makes sense I kinda always cut them off so to speak. as well as swings, always hated them and now I notice my son who is 3 has a fear/terror of swings. is this a vertigo related issue or what?

[bellgirl]

I used to have Vertigo/Dizziness as my all time worst symptom, and yes, I believe that I still run into things, misjudge door ways, inanimate objects and people all the time, because of this. I used to love to swing, but not so much anymore. If I look to the side, I still have the propensity to fall sideways, as well. I still have trouble in the car also, becoming motion sick, even being on treatment, so if it's a long trip, I take zofran.

[Christy_D]

My son frequently walks into the wall(drifts toward it) or cuts corners to sharpe and walks into the corner of the wall. When he was younger, he used to get sick and throw up every time he got in the car. Thank goodness that is no longer an issue. He does have to pay close attention to the road though.

[issie]

I get terrible motion sickness and must sit in the front seat and not read at all in a car. I can look at the ripples of the water ---standing on shore and get sick. I'm not sure what causes it - but, it's no fun. Motion sickness is the worst. I have trouble judging distances too. It's like our eyes and our brain register things wrong. I always hold onto my hubby because of the fear of falling and mis-judging where to walk and the distances of things around me. Since I have EDS - I'm easy to turn an ankle or trip up any way. So, I don't need any more broken bones. Thankfully, my hubby loves for me to hang on to him. So, no problems there. We are the cutest older couple ---looking like teenagers. LOL

Issie

[anna]

That issue is an ongoing joke in my house my daughter without fail walks to her right and one of my boys walks to the left so much so we joke that when they are out together is the only time they walk a straight line as they walk into each other lol

[britishangel6]

I had to laugh when I read this. While a atrribute my clumsiness to POTS and know it's worse when I flare I hadn't even thought about walking into people you mean to walk beside. I've done that for years.

[HopeSprings]

According to several articles the vestibular system influences the autonomic nervous system. I think this is huge for us, but doesn't appear to be under investigation. I e-mailed the author of the second study below about the POTS/vestibular connection, but didn't get an anwer. I also put this question to the Doctors who answer questions for the DINET newsletter - I'm hoping one answers. So many of us have this vestibular type dizziness which is different than orthostatic lightheadedness. What's the connection...

http://www.ncbi.nlm.nih.gov/pubmed/9416586

http://www.ncbi.nlm.nih.gov/pubmed/9674521

[issie]

Okay, these articles are very interesting. I have apena too.

I also wonder about the agrophobia and genetics. I have a couple of great aunts that I was told would not leave their homes for years. If there is a genetic component to this ---wonder how that would be determined and what could be done about it. My dad is the one with AS too and that has a genetic component to it too.

If you get any replies Naomia please share them.

Issie

[Angela]

yeah cars often make me dizzy, especially when driving. I noticed several years back that my night vision got all wacky and driving at night freaked me out. Mainly, the yellow lines and reflectors in the road I couldn't calculate distance and sometimes got confused as to which line to follow. I have always gotten car sick too....when we went on vacations when I was a girl we would always drive and I always got nauseous

[MomtoGiuliana]

Even tho my POTS symptoms are generally mild, I have a tendency to bump into things, to feel dizzy when in motion and to get motion sickness.

[HopeSprings]

I think this would particularly make sense with viral onset POTS. Total speculation... I'm thinking a virus hits, get into the inner ear, does some damage to the vestibular system... the autonomic symptoms follow. I had vestibular symptoms on and off in childhood, worse as a teenager/young adult, constant since my 20's and then POTS was thrown in there somewhere.

Issie - that researcher never got back to me, but I pestered some other people in his department and got a response, but they only wanted to deal with other researchers/medical professionals. This was months ago. I'd like to reach out to the POTS researchers and get their thoughts.

"Viral

Viral infections of the inner ear are more common than bacterial infections, but less is known about them. An inner ear viral infection may be the result of a systemic viral illness (one affecting the rest of the body, such as infectious mononucleosis or measles); or, the infection may be confined to the labyrinth or the vestibulo-cochlear nerve. Usually, only one ear is affected.

Some of the viruses that have been associated with vestibular neuritis or labyrinthitis include herpes viruses (such as the ones that cause cold sores or chicken pox and shingles), influenza, measles, rubella, mumps, polio, hepatitis, and Epstein-Barr. Other viruses may be involved that are as yet unidentified because of difficulties in sampling the labyrinth without destroying it."

[HopeSprings]

Also, so many of us have ear symptoms.

[issie]

I had chronic ear infections as a child. Okay, here's another thought ---could vaccines have triggered it?????

Since I think my POTS was triggered by a vaccine.

Issie

[bellgirl]

Naomi, I had ear surgery, because I had a malfunctioning eustachian tube after a virus, had vestibular neuritis twice with horrible vertigo, so I first went to an ENT in Birmingham, Dr. Pappas Jr., who did a thesis on Autonomic Vertigo, three years later, when I could no longer stand the dizziness!! He's the one who sent me to the Autonomic Disorder Center of Alabama, where I was diagnosed. He knew immediately what was wrong with me. I found his father, senior, on the internet with testimonials written about him. Had every ear test, known to man, and I didn't have Meniere's thank goodness, but he said my results were strange....lol

[HopeSprings]

My eustachian tubes don't function properly either, Kim. I had tubes placed, but (of course because I can't win) it made things worse. So did the POTS symptoms come after this virus or after the ear surgery? Did they link the POTS symptoms to the ears? Or is there no connection?

[Kris4444]

At Mayo they diagnosed me with a left eustachian tube dysfunction....hmm

[bellgirl]

There is definitely a connection....all the weirdness health wise for 13 years before diagnosis now makes sense!!

[GypsySoulNicole]

Interesting topic! I too have always had issues with walking into things, my daughter does as well. I no longer drive at night because I will stop at stop signs way before I should have. I get car sick as well. I've only been on a boat a couple of times and it was a nightmare! My mother and aunt both have vertigo issues and were dx with menieres. I had a tube put in my ear about 7 years ago, I passed out during the process and after waking up had severe vertigo for about 3 weeks. My oldest daughter has had 4 ear surgeries, even having her ear drum removed and inner ear surgery for a removal of cholesteatoma. When they got in the inner ear, she had no cholesteatoma, just scar tissue and inflammation!

My mother (who is 73, but crazy active) had a bout with vertigo last week. I took her with me Wednesday to my new Amish doctor. He asked her about vertigo and which side it originated on. Usually, she will get it when she wakes up in the AM and turns her head. Her ENT has done this manuever in the past where they manipulate her to put "crystals back in place " that they say are floating in the inner ear. Like every visit thus far, the Amish doctor had a resolution. He explained new research that vertigo and inner ear issues were a symptom of teeth and jaw issues. He asked if she had tmj, (she doesn't that she knows of) but then she remembered she has had a tooth on the right side that has been cracked for a few years. She had dental work done (veneers) and put fixing this tooth off as it wasn't bugging her too much and she didn't want the expense. His office now offers thermal imaging to show areas of high inflammation. I was surprised to see the photos of those with mouth /jaw issues and the highest contrast of inflammation (where it lights up white, followed by red for 2nd most inflamed) were not by the tooth or jaw but toward the inner ear. Mom called her dentist when she got home and made an appointment to have her tooth removed next week. I am interested to see if it helps her vertigo issues. Just something to think about, oral health is so important. With knowledge between oral health and heart health in the medical community I am baffled why medical and dental insurance are seperated. Dental health should not be a luxury like it is only cosmetic, that's a whole new post though isn't it! lol!

[Kellysavedbygrace]

Does anyone else have to be led out of a crowd?

I avoid being in places w lots of people bc it literally makes me crash. I've only been to a few dinner parties since developing Dysautonomia (a close friend's B day, a wedding and a church Valentine dinner- at the request of my hubby.). And to leave each event early and always crash- spending the next couple of days in bed feeling like Ibe been run over by a Mack truck.

But, if I am somewhere where a crowd emerges, like at the end of my daughter's school play- lobby full of people- I literally cannot navigate my way through. Someone has to hold my hand and lead me out- during this time I try my best not to look up and it helps if Im wearing earplugs. I also have to ask them not to stop for anything bc I can't stand upright in those situations. I'm ok if I keep moving but am already so faint that I'm sure I'd go down if we had to stop- although that has never happened. If my hubby or one of my close friends is not around I stay put (in my seat) or escape to somewhere quiet until someone comes to get me.

As far as driving, I'm very limited. Single lane roads almost exclusively and no night driving. Parking and turning requires a lot more concentration and effort.

As a side note- I have no vertigo or agoraphobia but I do have:

- severe consistent bilateral tinnitus (ringing of the ears) - can hear 2-4 different pitches at the same time varying w severity of

symptoms.

- marked abnormal right ear electrocholeography- found on I had a balance test last year. The ENT had no idea what if any role that plays in my case.

[NaomiSpellman]

I had uninterrupted rotational vertigo for 7 years. It was so bad I was constantly nauseated and terrified, and couldn't focus on much. My Otoneurologist said I might have brain damage resulting from the vertigo, because when it dissipated I was still unsteady and often "slow" or stilted physically and cognitively. Now the vertigo and dizziness are intermittent, and I have recently noticed that THE VERTIGO AND DIZZINESS IS OCCURING AT THE SAME TIME AS MY LATE MORNING OI ATTACK. This makes me wonder if the vertigo all along was due to dysautonomia.

But the severe vertigo started one October after surfing - I got cold dirty water in my ears, and may have had Shingles cysts inside my ears after that trauma. Have had constant pain and pressure in my right ear ever since, and hearing/comprehension problems. Now if I swim, when I get out the water I am so sick with vertigo I have to hold on to the walls and I can't tell which way is up for about 40 minutes. The post-swimming vertigo attack lasts for about 30 hours, so I gave up all water sports. The vertigo responds positively to antivirals (but not completely). The vertigo also responds to acupuncture, but again unreliably.

I've had ear problems since I was small (tinnitus, ear pressure and pain). Like Angela I had navigational problems since a young age. Had horrible travel motion sickness since birth. I used to vomit after a 10 minute car ride. It seems as if vertigo disengages you from your navigational sense. I learned, though, to pay attention to navigational signs - but ignore my "sense of direction" - which tricks me due to false sensations of movement.

Like one of the other replies here, I also have terrible problems seeing/navigating at night. I lose my sense of depth, and I cannot tell how far or close things are. I can't distinguish between reflections and other lights at night, so that all of them seem to create a cacophony. I had to stop driving at night because it was so stressful to process. I do a lot of walking these days.

Thank you this is so helpful. I suspected this connection for awhile now between vertigo and POTS.