Vertigo, Unsteadiness, Not Gluten-related.

[BRUMI1968]

A little over a month ago, I woke up with vertigo. I turned in the bed and got it, then whenever I would lower down or get off the pot, I would get it and fall into the wall of our tiny water closet. Arg. The vertigo itself (feeling of world spinning or self spinning) probably happened 5-6 times, never lasting more than 15 seconds or so. But when i wasn't having it, I felt very unsteady, like the world was about to spin, like I was not completely inside my body, etc. I went to the "doc" and she didn't think I had an ear infection, though she only glanced (never mind about this doctor who is totally unthorough and can't listen). Anyway, it took three weeks to feel totally better, but I eventually did. I also went to the eye doctor in this time because I found things visually to set me off on an uncomfrotable dizziness/about to have vertigo feeling. Turns out I have presbyopia - or 40-year-old needs reading glasses syndrome. I had just turned 40.

So, all was well until four days ago I was lying in bed AWAKE, when suddenly it felt like the bed tilted 90 degrees - I slammed open my eyes and grabbed onto the bed in response. Then thought, oh crap, not this again. Again, it got me on my way down to and way off of the toilet. But this time, and this has been going on for four days, I am less "dizzy" all the time, but more vertigo. I do occassionally get pressure in my ears and head, but don't have a cold or anything like that. I went to this virtually worthless "doc" again, for some reason (vertigo must be making me crazy) in part to get some valium, since it is a legitiamate treatment for vertigo, and would help with the massive anxiety having vertigo was giving me. Of course she wouldn't give me any -- it's tough to get opiates. Anyway.....

Now I'm thinking I should go to an ENT, but it will cost me $300. If that drums nothing up, it's off to the neurologist. Anyway, this is the typical route to deal with these things. So...questions:

1) to those of you who have used physical therapy/Epley exercises for this - do you think trying the exercises or going to physical therapy a couple times would help me determine if it were the benign bla bla vertigo, caused by the funny rocks being out of place? Do I NEED the diagnosis to get benefit from this? If I'm not vertigo-ridden constantly, will I be able to tell if this is working?

2) to those of you who went to the ENT and got a diagnosis...what was the visit like, what did it entail? What did your diagnosis end up being and what was the suggested course of treatment?

I do not have any nausea, vomiting, or sweating thus far. Just the vertigo, and unsteadines, and anxiety, and visual disturbance (if a table is moving, I get dizzy until I figure out it is the table moving). My life is complete nutso right now - just got married (after 17 years together), am moving, my dog is dying, etc. So I have not ruled out somatization, but I'd like to make sure it's not something medical first.

Any thoughts would be appreciated.

[ShayFL]

Welcome to my world for the last 12 years. It is not a fun place and I would not wish it anyone.

I went to 3 ENTs and 1 neurologist for it. I wont lie, the tests are awful. They intentionally make you dizzy over and over. I wanted to puke so bad and after both with the two different ENTs I felt so off kilter afterwards for a few days. I couldnt drive at all. It just sucked! The last ENT noted that the fluid in my right ear did not respond properly to several of the tests. He offered no cure. But said physical therapy could help me. And it did. They taught me exercises I could do daily and I was also told that anytime I made a movement that caused vertigo, I was to repeat that movement over and over until it no longer provoked vertigo. In essence this rewires the brain and teaches it that that particular movement is normal and where you are in space. It really did work for me quite a bit. I still have that "off" feeling, but since gluten-free it is not non-stop. Just now and again. So I am thankful for that!!

You should not do the Epley maneuver without an exam. If by chance your vertigo is being caused by a blocked artery, there is the potential for stroke doing those exercises. And if done incorrectly, nerve damage is another possibility.

I do know of people who just did the exercises anyway and were fine. Only you can decide if you feel safe doing them. I didnt. I got an exam first. I dont have BBPV, so they would have been a waste of my time anyway.

Here in Tampa we now have a center that focuses only on Vertigo and nothing else. They didnt have it back when.......But if it got bad again, I would go there.

I hope you get better soon. It really really sucks!!

[Jenny (AZ via TX)]

I had this too. One morning, I turned over in bed and everything started spinning. It was awful. I went to two ENT's, my family doctor, a neurologist and an eye doctor. No one could figure out what it was. I had two CT scans and an MRI. I was like this for a year.

Then my sister told me about this doctor in Michigan (I live in Arizona). She gave me her website (vsofb.com). I looked it over and it talked about this doctor that treats patients with vertical heterophoria. I had never heard of it. The more I read, the more it sounded like me. I called the doctor and she called me back and spoke to me for at least 30 minutes. She faxed me over a questionnaire and had me fill it out. I sent it back and she call me back that night. She also told me about another doctor in Houston that does what she does.

I thought, what the hell. I've been basically homebound for a year. I was too scared to drive as I would get really dizzy, especially when driving at high speeds. When I would stop, everything would spin! It was horrid.

I went to see her and she diagnosed me with vertical heterophoria. The fix was to give me eyeglasses with prisms in them. She examined me all day testing me with different prisms. She is an optometrist. My dad has been in the eye business forever and couldn't believe I was travelling all the way to Michigan to see her. I'm so glad I did, because I do not have the dizziness I had.

This is a medical condition and can be billed to your insurance if she is on your plan. Their office is very professional and very caring.

When people ask me why I wear glasses now, I tell them what happened. Of course, they have no idea what I'm talking about.

[ShayFL]

I have never heard of that Jenny. Wow!! So glad you got help for it. I looked it up. Did you have headaches with it?

[Jenny (AZ via TX)]

Yep, headaches, migraines, anxiety and nausea. It was pretty much my last hope in going to her. I'm so glad I did. Most people couldn't believe there were no doctors in my own area that could help me. Well, when I had gone to my eye doctor, and opthamologist, and mentioned the dizziness, she told me it was definitely not because of my eyes.

Unless you've been dizzy (as you have) for a period of time, a person can't imagine how it could feel to have it every single day. It limits you socially and in everything you do.

[ShayFL]

You are so right Jenny. It totally changed who I was. I went from an outgoing social person to a homebound recluse. It is the worst of all and any symptoms I have ever had.

Thank you for sharing your story. You never know when it could help someone else.

[Rachel--24]

Dizziness/vertigo can be presenting symptoms of Lyme Disease for some people. If all else fails...its something else to consider.

[fedora]

vertigo can also be a symptom of a virus.

I woke up with horrible vertigo one night years ago. BAD. There was a bug going around. I could not move at all or else the room would spin rapidly. I do not know how I made it to the bathroom. I walked with my head hung down but I still spun like that. I have been more likely to get motion sickness or dizzy since then. Just yesterday morning I had to wake up earlier than usual. I felt like I was about to spin, but did not. Last night I woke up and was about to spin. When I get sick I feel like I am no longer connected to anything, even the earth. Horrible. Luckily I did not spin, but I get so afraid my heart starts pounding. There is a stomach bug going around now and I felt much better after using the bathroom. I have never spun like that again since the one episode, but feel like it left some residue.

I hope you get better soon.

[roxnhead]

HEY! I HAD B-12 DEFICIENCY-SAME SYMPTOMS-HAVE IMPROVED DRAMATICALLY WITH INJECTIONS! JUST A THOUGHT--HAVE YOU BEEN TESTED FOR VITAMIN DEFICIENCY'S?

[ShayFL]

It's true that vertigo can have MANY causes and you have to be quite a sleuth to try to find out why. Some of us never find the answer. But I am improving gluten-free so I have to assume it was either directly related to gluten or do to a nutritional deficiency because of gluten intolerance.

I was originally told a virus...but when it didnt go away after 3 months....I went to an ENT....then another....Then the neurologist.

Get this there is a form of migraine where dizziness is the ONLY symptom.

And dizziness can also be a symptom of anxiety (with no physical cause).

Many things to consider.

Most of all I hope you get better soon!

[mushroom]

Not much to add except that it is possible to have transient vertigo which goes away of its own accord.

It hit me when I was getting off the toilet at work; had to stagger back to my desk holding on to the walls. It was very unnerving. My attacks would last about half an hour and then I would be okay for while. I had an MRI of the brain which was normal, and the Antivert medication they gave me had no effect. It would always come on when I was changing positions. When I got into bed at night it felt like the room was going one way and the bed the other. Most disconcerting. I did continue driving and never actually had an attack in the car, but was very careful getting in and out so that I kept my head on an even plane. It seemed to be an inner ear problem, and one day about six months later I noticed I was not getting them any more.

During this six-month time I also suffered from what was diagnosed as optical migraine when jagged lightning-type lines would move in front of my eyes. I suppose in retrospect I was under quite a bit of stress on the job. I have occasionally had these optical migraines since.

I do hope your symptoms resolve spontaneously like mine, and that it happens soon for you, or that you find out what is causing them. Feel better soon.

[ShayFL]

Those optical migraines are scary. Especially the first time. Mine were caused from birth control pills (17 years ago). I stopped having them when I got off the pill. But had one about 5 months ago after I tried to have some wine. I dont normally drink any alcohol at all. But had 1/2 glass of wine and it triggered one of those optical migraines. Bah!

[SeMeCl]

I am not trying to diagnose you, but rather give you another thought. I am a Speech, Language, and Hearing Sciences major and this could be due to problems with the crystals in your semicircular canals. This is the organ in the ear that controls our balance. If the crystals are out of wack, you are too. It could explain the vertigo and balance issues. An audiologist or ENT could help out with this. (And no, the balance tests aren't fun.)

It's just food for thought and another prospective. I hope you figure it out and get better soon. I know my step-dad had problems with vertigo and was miserable.

[BRUMI1968]

Thanks to you all! I did have my B12 checked and it was within normal ranges, though I thought on the low of that. Nevertheless, not low enough to be the probable cause of this. All my thyroid stuff came back alright, but I insisted on getting different tests for that since I can't get over the idea that my thyroid is low. They don't want to believe this since I'm skinny. "You can't have an underactive thyroid, honey, your BMI is under 19". Well, we'll see about that. My sister has celiac disease and she weights 300 pounds. Doctors sometimes. aRg.

As to the ear crystal things - yes, I'm going to see an ENT next week and see if I can't figure out what the likely thing is. I only get vertigo right now if I bend down to the ground or squat on the ground and move my head, or if I look up, like at a plane, with my head slightly behind my body. I tried to look at the top shelf of the vitamin display at the store today and almost had an attack. So far, while up and out of bed anyway, side to side head movement doesn't cause it. Who knows. All today with ZERO vertigo, but lots and lots of disequilibrium. I did realize today that when I do start to fall from disequilibrium, it is always to the left side....which makes it sound like a singular ear problem.

I've done lots of research - the web is such a powerful too - but there are too many options even just within the realm of the ear related issues, that I need to go to the ENT. Darnit. I wish I still has insurance. They said it will be 300 bucks, including a hearing exam. I am going to call and talk to a nurse and be sure I'm pleased with their diagnostic equipment. If I have to pay that much, I"m going to make sure they have all the modern devices - if they don't, I'll drive the 90 miles to Seattle to get it done right.

Anyway, thanks to you all. I was surprised to learn how fatigue is caused by these vestibular problems because you spend so much of your brain and body power trying to stay steady and compensate for things, that it just plumb wears you out. So if it turns out to be vestibular AND one of the "cures" helps me, maybe I'll quit being so tired on top of it.

Thanks. -Sherri

[ShayFL]

I was told for 12 years I couldnt possibly be hypothyroid because I was skinny and had D. I didnt fit the text book patient. And my labs came back "alright" for those years too. Until I learned that over 5 years ago the TSH was changed. Once I learned that, I printed out a copy and took it to my doctor who said...well looks like you are hypothyroid afterall. I fired him and found another doctor who could treat me with Armour. Best thing I EVER did!!

go here:

www.stopthethyroidmadness.com

And LEARN LEARN LEARN

Did they test you MMA to look for B12 deficiency? A simple blood test is not very accurate especially if you take any B12 in a vitamin. Mine was low end, but the shots did help me get more energy. I still take sublingual.

[SeMeCl]

Yeah, I'm not a doctor at all. Just from what your saying and what I've learned, if it is specific to certain motions I'd be sure to check the semicircular canals (specifically the crystals in them.) And don't be fooled, just because they're in the ear doesn't mean they have to do with hearing, they have SO much to do with balance. The organs of the ear are so delicate that even small stuff can affect them, the ear is INCREDIBLE!

Sorry about my fascination moment. I'd make sure that ENT checks EVERYTHING if you're paying that much. Go in with an open mind, sometimes the simple stuff is the best (a basic diagnostic test may sound stupid, but it could be the thing that gives you an answer). If this sounds stupid, just ask people here how many complicated tests they went through for gluten intolerance/Celiac and got negative results, but when they simply stopped eating it, they were better. Also, sometimes the complicated stuff is necessary and provides the correct answer. I think sometimes we have bad experiences trying to discover why we are feeling so crappy, so we become skeptics and close-minded about all tests and doctors, but keep in mind that not all are terrible, there are actually some incredible doctors out there, many incredible doctors. Be informed when you go in and be yourself advocate (no one will do it for you.)

Good luck and take care.