posted
Hi. Thanks for any replies in advance! Just wondering if anyone had ever felt like they are tilted?
I know it sounds weird but I actually see things at a slant...I guess disequilibrium but never ending. My ears are messed up too but they cant really find anything wrong and Im not on any medications, herbs only.
I have done a lot of tests and vestibular rehab/exercies etc. ENT says it is caused by a virus but I have had it for 4 years!! Frustrated
Has anyone figured out what causes it or anything they found helpful?
Thanks!
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Keebler
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posted
- Yes.
No. It does NOT sound weird at all. It makes a lot of sense.
It really worries me when anyone says symptoms are "weird" (but "crazy" really gets me the most. Those with such symptoms can really shot themselves in the foot by even thinking this, much less saying these words to any doctor.
Yet, I've been there, too. Took a while to figure out that I had to understand this is not weird at all. Unsettling, off-putting, and all that but not weird. It makes perfect sense
and is also described in lyme / TBD medical articles. Even if not structural - various infections can cause this temporary due to inflammation, nerve infection, etc.
There's even a Wobbly Possum Virus.
"but they can't really find anything wrong" you say. Well, my dear. They are not "looking" hard enough, they don't have the expertise or the knowledge / availability of all testing methods . . . and there may not be just the right testing method but - please - do not hear that there is no physical reason just because "they" "really can't" figure it out.
That's what they used to tell me. They were wrong. Lazy, biased, ill educated in this area - and, yet in fairness - the testing had not yet been developed. For me, a CT scan done with exact - exact - specifications showed ear bone issues.
Still, not all bone issues or fluid issues in the vestibular system are able to be "seen" on any kind of test. They have to use their brains.
Also, there could be parts of the brain involved here, too. Scan this for some more detail: See the SCD posts.
back later with ear thread. -
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Keebler
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posted
- In the meantime, a good osteopathic doctor might be able to set things right if your spine or other skeletal / ligament structure might be out of whack.
I'd start there. See who is in your area trained in the gentle full body UPLEDGER CRANIAL SACRAL malipulation technique. They might even be on your insurance.
Just never let a DO or DC suddenly / sharply twist your neck. With lyme, any infection in the spinal cord, it can be devastating to the brain.
GINGER capsules might also help.
FOOTWEAR matters, too. Be sure you are wearing shoes with good proper support and that your posture / walking / gate are in alignment.
GAS in the home? If you have gas heat, gas anything . . . you might have someone come out and be certain there are no leaks. -
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Keebler
Honored Contributor (25K+ posts)
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Superior Canal Dehiscence Syndrome (SCDS) -
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Keebler
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posted
- And, oh, please forgive me if I sound stern. It's not frustration at you but at your doctors for giving up on you, dropping the ball and letting you think it / you are weird in any way at all . . . or for their ignorance in thinking just 'cause they can't "find" something wrong that it's not.
However, do consider that just because you've had this for four years does not mean it is not virus related.
And even if virus / or other infection related (it need not be limited to a viral infection, ANY infection can affect vestibular function) . . . well, there could also be other issues at the foundation of this.
Even those "wobbly possums" in Australia did not have an answer until the late '90s or so (if I recall correctly). Does not mean they were not "wobbly" before the testing / evaluation methods were refined. They were likely just told they were weird or crazy, eh?
If you have (ever have had) a LLMD or LL ND, be sure to pose this question to them. If a real LL doctor, they should know all about it. Also ask if they know of a NEUROTOLOGIST (pronounce "neuro" "ototogist" - it's a vestibular expert with extra training in the brain / neurology
AND if they think you need to consult them. Perhaps not, though do first consider UPLEDGER and addressing the various TBD / chronic stealth issues that you might have.
And, again, do not underestimate the power of good organic GINGER capsules to help as you sort through it all.
If, by chance, you have dyslexia or dyscalculia (math dyslexia) then there may be neuro issues connected to this. But even for some variations of dyslexia, the inner ear can be partly to blame, not just the brain. -
[ 09-07-2018, 02:30 PM: Message edited by: Keebler ]
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posted
Thanks Keebler! Lots of good information here!
Yes, I have chronic infections but due to sensitivity, I have a hard time getting to high enough dose on anything and plus brain inflammation on top of that so head is crunchy and foggy and get so much worse with treatment that Im literally confused.
They did an MRI and of course can see anything except a lot of white matter indicating a chronic infection.
Thanks for the advice on the chiropractor.
What kind of ginger capsules do you like? never thought about adding that in Posts: 137 | From ATX | Registered: Nov 2011
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posted
That is exactly what it is....SCD! Thank you!
I will read more about it but its describes the whole thing perfectly. Sometimes my own voice is too loud and sometimes almost like an echo. The world is too loud and the right ear is stuffed or clogged. I am always tilted on the right...4 years of it. All I hear is crunchy sounds all the time.
I am going to try and find one of those doctors you mentioned. Ear neurologist although I'm not sure they can do much. Thanks you!!!
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Keebler
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posted
- An MRI cannot show the inner / middle ear structures. It would have to be a very specific CT scan, not the typical kind.
So, as you mention hyperacusis, SCD is more likely. And the crunchy sound, that's classic symptoms of SCD.
9-min. video originally done by ABC News -
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Keebler
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- I like Oregon's Wild Harvest GINGER caps. at VitaCost.com and iHerb.com and in some natural foods markets or from their own site.
Eclectic Institute also good. -
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Keebler
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- I don't have time to search dozens of pages of hand written notes from lectures about Low Carb / High (Healthy) Fat . . . or Ketogenic diet / life style yet,
this interview - in 2 or 3 parts . . . a retired neurotologist from Chicago was interviewed by one of the best LCHF folks
the Dr. has done some observations with patients who had bone loss / thinning of the the inner / middle ear region and this diet SEEMS to have helped them build back some of that bone density. He has CT scans to back that up. I don't recall over what period of time.
I've been doing modified ketogenic / LCHF for 13 weeks now and I can say that just getting the insulin down (I presume) is helping my balance and the tinnitus.
The point is to go "no sugar" under 20 or 30 grams of total carbohydrates a day and that is with about 2-3 cups of above ground veggies.
Good fat from good & consciously raised animals / meats, grass grazed, etc. EVOO, Coconut oil . . . and adequate (not high) protein mostly from animal / fish / eggs.
so as not to prompt insulin. Carbs prompt insulin spikes and overload (for many); protein to a lesser degree yet we still need adequate protein; fat is the only of the 3 in the main group that does not spike insulin (in those who are insulin resistant / metabolic disorder / pre-diabetes or T2D).
It's the insulin spikes that he thinks so damage body tissue, including the vestibular system.
And, with all I've been through, this really makes a lot of sense. I could not get surgery for my SCD so this is a very nice thing to explore.
IF this might seem right for you, IF you might have insulin resistance or pre-diabetes or T2Diabetes.
I will check my notes later for detail but, for now, a place to start (and less involved than surgery if you might have SCD).
posted
Thanks so much Keebler! Really helpful and makes the whole thing a little less scary. I appreciate all of the information!
I will get those ginger caps and start there and check out the diet. I am having gallbladder issues right now so me and fat are not getting along too well but I dont eat any sugar but I do eat fruit and some grains (no gluten).
Read a little more about the surgical options and sounds expensive which I have no money. I have more research to do! Thanks again:)
Posts: 137 | From ATX | Registered: Nov 2011
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Keebler
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- Any grains can spite blood glucose and that spikes the dangerous insulin. Fruit / fructose works through the liver and can really damage in excess (and it does not take much). Be sure for now to stick to only dark berries, organic. 1/3 cup would be the most the liver can handle at one time.
Many of the ketogentic / low carb lectures talk about fruit yet this is the place to start. Sarah Hallberg, too.
Well, diagnosis would be first, of course yet it makes sense to consider the insulin effects and damage too much can cause to nerve cells, other cells, tissues, etc.
Personally, surgery would be low on the suggested list for most with lyme as they have a harder time with surgery, there are very few surgeons trained in this specific technique so I'd only go with one that has special training . . .
but most doctors / anesth. / hospitals are not at all equipped to serve the needs of someone with lyme regarding surgery and the after care. Getting all those pieces in place is tricky.
And, since we know there may be an non-invasive way to approach, it makes sense to look at that.
Gallbladder questions have been asked in many of the - oh, about 70 presentations that I've watched. There are books, too: Stephen Finney, Volcer, Tim Noakes,
the work by Dr. Eric Westman at Duke Univ. also addressed this. They all have great lectures at YouTube, too.
And seek out the work of that neurotologist Ivor Cummins interviews to see what else he's put out. I've just not gotten around to that yet. So much of his interviews made sense and I saw long after I had started this, anyway.
Actually, for most who have gallbladder issues, or even no gallbladder, they can still do quite well on a keitogenic or very low carb/higher fat diet if properly formulated to exclude all the bad oil that oxidize (such as used in most restaurants & "vegetable" oils that are really industrialized chemicals -- sometime hidden or falsely presented in labeling.
Finding a doctor &/or nutritionist (not likely dietician, though) who is trained in this approach is key. There are places to find a list, though. -
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posted
Great information Keebler! I really really appreciate it! I will look into all of this:)
Posts: 137 | From ATX | Registered: Nov 2011
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Babesia made me feel off balance or titlted all the time
If you can ask for a Babesia test from the Igenex lab that may eb expensive but helpful
Babesia treatment requires anti-protozoa drugs
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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