HopeSprings Posted January 1, 2011 Report Share Posted January 1, 2011 I was responding to a post about ears and talking about the vestibular system and decided to make this topic its own post. I have noticed A LOT of people here have ear problems and the type of dizziness and other symptoms that go along with vestibular disorders. I have read (not in much detail because I find reading difficult) that there is a relationship between the autonomic and vestibular systems. Is it possible that we have an inner ear disorder that is causing the "POTS" ? Hey, there are a lot of theories... I don't think we've explored this one yet? Any thoughts would be appreciated. Quote Link to comment Share on other sites More sharing options...
lieze Posted January 1, 2011 Report Share Posted January 1, 2011 I actually just did a search to see if the clogged eustachian could trigger the vasovagal episodes that I'm seeming to have an increase here in lately.I didn't find anything but what lead me to that search was-I did the manuever where you hold your nose shut and blow to try to clear the ears and I felt it faintly trigger the vagus nerve I think.Another flashback I had at the time was the chaplain at the hospital on one of my ER trips looked at me funny and also said that she had changes at these age that were shocking including ending up in the hospital for depression-she said she did not see that one coming at all-the other was she had to have surgery to have tubes put in her ears.The question she got with a weird look on her face was----did you have a heightened sense of smell that day you had your episode???At the time I answered no but I often do get a wiff of ammonia or start thinking I smell or that there is a weird smell coming off my body.I also seem way sensitive to perfumes now and also any cleaning products can throw me for a loop. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 2, 2011 Author Report Share Posted January 2, 2011 I am also super sensitive to any sort of artificial smells like perfumes, cleaners etc. They trigger my symptoms really badly. After doing a little searching online, yes there is a direct relationship between the vestibular and autonomic nervous systems, but there hasn't been much research done on it to conclude anything. (that I could find anyway) But here's an abstract that kind of talks about what I am thinking. I e-mailed the researcher... can't hurt to just look into it. http://www.ncbi.nlm.nih.gov/pubmed/9416585 Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 2, 2011 Author Report Share Posted January 2, 2011 Oh here's another more concrete one:http://www.ncbi.nlm.nih.gov/pubmed/9674521 Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted January 2, 2011 Report Share Posted January 2, 2011 Fascinating! When my head first blew up, two weeks before my first seizure episode/ER trip, I woke up and walked into a wall. Within 24 hrs, I was seeing double and having to hold onto the wall in order to walk because my sense of balance was gone (when I was in the hospital two weeks later, one nurse asked me if I was blind because the workers thought I was from seeing me walking around). Obvious first thought was stroke in my brainstem despite the fact that I was in my 30s (anti-phospholipid antibodies supported that hypothesis tho); second hypothesis was MS, which also was not supported by clinical data (er, two lumbar punctures and 1000s of MRIs later). Neuros had no clue. I was even sent to an ear guy, who said it was not Meniere's. The closest the neuros could get was that it was something wrong in my brainstem (because of the cluster of symptoms), and then it became a trivial issue when I had my status epilepticus episode, which became the overriding concern....Most of my balance problems since then have been very transient. Usually during a moment of stress the room might start to spin; or, obviously, due to postural hypotension. It's only now that I'm seeing how the autonomic system is not working properly. I'll be moving to Pittsburgh in several months....maybe I should look the researcher up! Thanks for bringing this up. Quote Link to comment Share on other sites More sharing options...
jem15 Posted January 2, 2011 Report Share Posted January 2, 2011 I agree, there's a connection here, and that for some reason doctors haven't explored or mentioned much, but it seems logical that somehow things are related. The vestibular nerve is just that, a nerve, so it seems likely that there's a neurological component. But is it and inner ear thing causing the autonomic dysfunction.. or the autonomic dysfunction causing problems with the vestibular system? or are they both interrelated? ha, who knows... i wish i had a good doctor to explore it.. but in the meantime I've just been trying to do that myself. I got 2 very different opinions from ENTs that were "neuro-otologists". I've seemed to have the best luck so far when the "neuro" prefix was put in front of specialists, like "neuro-optometrist".. or "neurophysiologist"... So I figured that would be the best kind of ENT to look for, and they are the ones that deal with dizziness. Though I havent found out anything too earth shattering yet... there are some "things that make me go hmm"... Like when my ENG results were a tiny bit off.. they said that could be caused by a virus, that damaged/irritated the vestibular nerve. My POTS symptoms came on after a virus.. so I wonder if the vestib. nerve was affected.... He said in some cases, they give you a month of Valtrex, and sometimes that heals the irritation/symptoms.. Ha, probably a long shot, but can you imagine if that worked? i might just ask to try it....The other popular diagnosis is vestibular migraines... and it seems people with this are sensitive to a lot of sensory stuff and movement, etc... but again.. is that just a symptom of the POTS or it's own thing?The other thing is that the vestib/vision systems arent processing things right.. which again is like a neuro type problem... but again, which system is causing which?I just wish doctors put half the effort thinking about things, like we do, and maybe we'd be getting somewhere;-) I go for a brain MRI that focuses on the inner ear tomorrow.. then to the ENT Wednesday... we'll see what he has to say.. but he was the one stuck on vestib. migraines... but when thinking of treatments.. i'm wondering.. would treating the POTS, help the symptoms... or treat the "migraines" if that's what they are.. and do the POTS symptoms subsides... Ha, confusing... but there's a lot of overlap, that I'm learning to be very true. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 4, 2011 Author Report Share Posted January 4, 2011 Caterpilly -- we have so much in common and have gone down the same Dr. roads. I currently have two pending appointments, one with a neuro-opthamologist and one with a neuro-otologist. I agree "neuro" is the way to go. Please let me know if you learn anything new. I am especailly interested in the MRI focusing on the inner ear because I was told the inner ear cannot be SEEN except at autopsy! Please please keep me posted. Oh by the way, I tried the Valtrex because there is a theory that the herpes virus may cause Menieres -- didn't work for me, but others have been helped by it.Naomi Quote Link to comment Share on other sites More sharing options...
bkweavers Posted January 4, 2011 Report Share Posted January 4, 2011 My 14 yr. old daughter has had POTS since March of 07'. At the time, she underwent testing for the vestibular system at the ear, nose, and throat doctor. This was before we got the diagnosis and everything came back normal. Fast forward to Jan. of 10' and her physical therapist was wondering if maybe vestibular rehab would help her. She had spent almost 3 years completely horizontal and was unable to sit up, stand, or walk due to extreme dizziness. The therapist was curious if her vestibular system was now causing more issues with her POTS. This past summer, Liz spent 3 days a week at vestibular rehab in a hospital near us. The therapist worked her very hard and had her up with the assistance of a gait walker and other tools. It was hard at first and very hard for me to watch her struggle but after 3 months of working at therapy and doing work at home, Liz is sitting up all the time now and her dizziness is almost gone. She went from hardly sitting up at all in June to sitting up all by the beginning of school. I don't know if this would help everyone on here since Liz's body was showing signs of improvement before we began the therapy. But I mention it because you never know who may read this and have same situation and it may help them. We had gone to a different doctor in April and he had just so happened to have had another patient who exhibited the same symptoms and the same action of being unable to sit, stand, or walk. The doctor was able to give us more insight into what may work, although I still give most of the credit to the physical therapist who mentioned it in the first place.It's definitely something that needs more research. Boy, if I had a dollar every time I've said that! POTS needs more research!!!Brenda Quote Link to comment Share on other sites More sharing options...
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