posted
You know how we are after awhile -- we get something odd/bothersome and we just wait it out or try to ignore it rather than rush to a doctor, since we know it doesn't do any good to rush to a doctor any more. However, when I mentioned this is passing to my LL nurse-practicioner, he said he thought it was definitely Lyme-related and I'm curious if anyone else has had or still gets it.
Dizziness, vertigo etc. I know are symptoms of Lyme and many other things. Here's what happens to me: I get extreme bouts of this every so often, and it ALWAYS starts before I get out of bed in the morning. In other words, I know I have it the moment I open my eyes. (Like when I used to drink too much and the damned bed wouldn't stay still, who else remembers that?! )
I hate to get up since I know I will just about have to crawl out to the kitchen. And deal with this for several hours. I used to bum Antivert from a pal until I discovered Bonine, which is over-the-counter and works pretty well. The common denominator here is THE TIME IT BEGINS -- I WAKE UP with this. That's the curious thing, and because it's SO specific I wonder if anyone else gets this too?
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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posted
You explained exactly how I feel every so often..3-5 times a week when I wake up. I also hate to get up and drag myself anywhere!! You could not have said it better!! I usually get up, force myself to some breakfast,try to relax...and end up back to bed for a few hours because..I have found...waking up like this exhausts the heck out of me.
I hope you get other replies because I have had a very hard time explaining this feeling to my regular doctor...who is not an LLMD, but Lyme sympathetic. I also can get nausea from it...do you?
Thanks for the great post.
Jean Perplexed
Posts: 324 | From Lexington, KY, USA | Registered: Dec 2001
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posted
By the level of severity when I wake, I can estimate what the rest of the day will be like. For me, it's more like seasickness or motion intolerance. Been dealing with it daily for almost a decade. The docs call mine a form of migraine. High dose steroids solve the problem while I stay on them, but are contraindicated in Lyme.
See if you can establish a connection with the prior day. Stress the prior day is a big trigger for me, as well as thyroid hormone supplementation, and Lyme abx dose.
Posts: 727 | From USA | Registered: Mar 2006
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posted
Thanks for the replies -- yes, "perplexed," I do sometimes get nausea with it -- but it is not like motion sickness, it's definitely more SPINNING -- the room is spinning more than my head or body is. If anyone's had bad middle ear infection, you know that's what it is. If a doctor were to look at my eyes when this happens they might see "nystagmus" --- some flickering thing the eyeballs do when it's middle ear related. That would help zero in on it. But I don't sleep with a doctor, just my cats! Anyway, I don't know why I only get it upon wakening in the morning. Therein lies the mystery.
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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posted
Same with me,I know how my day will be by how i feel when i wake.Usually takes an hour or two to clear my head out some.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i can't write much now-but if you search my name and dizzy you might find stuff. i woke up dizzy in oct and was hospitalized 5 days.
i gradually was able to get off the floor-use a wheel chair and walker and then finally began walking and driving again-but all the symptoms were not gone.
i got whooshes 3-4 times a day and fell about once a week. the firsr neurol wanted me on zoloft-i refused cuz of past experience with those kinds of drugs.
second neuro sent me to trigger point therapuy and i have only been 3 times but it is working really well.
i think it might be hard to find a therapist-but if you want her name pm me-maybe she will talk to your doc...good luck.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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LostCityAgent
Unregistered
posted
My dizziness is not spinning, but is altitudinous changes, such as if you are on an airplane and the plan hits a slight air pocket. I feel like the floor is moving. Is that vertigo? Gen doc did not even know.
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
ive had sinuses problems and vertigo for 2 years strait now.
I used to get "bouts" of it from smoke or allergies or like you say waking up.
It would go away usally, after I began treatment and started herxing alot it became chronic after some chemical exposure.
I have spent well over $5000 to try and correct this. Its crazy
Just look up my name and VERTIGO if you want to read my sob stories
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I woke up this morning with sinus pain and pressure. I felt like hell all day. Every time I get up too fast I feel like I am going to pass out, and I almost did twice today.
I've had the dizziness before. I wonder if the inflamation from the Lyme iscausing our equilibrium to be off.
Just a guess. I hope you all find some relief. Its not fair to spin around and not get to ride on the pretty ponies.
Love & Light
Posts: 188 | From NM | Registered: Feb 2006
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posted
You all describe your dizziness a little differently, but there are a couple of possibilities that come to mind.
It could be babesia related -- Dr B's guidelines describe this. Hubby used to describe this as the sensation you would have if you were walking in water up to your waist at the beach.
Another possibility is changes in blood pressure. Orthostatic hypotension is the term -- this is caused by adrenal fatigue.There was a recent discussion on passing out that talked about this more.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
lost-your description sounds like mine. not spinning-like being drunk in bed.
i do have a history of vertigo-spinning-from a car accident in 94. this is different.
my therapist seems to know exactly what it is and is tx 4-6 people a day with the same thing. she says theres a really good chance i will get better...chiros always say i will have to come forever.
she says the tightness/inflammation of my neck muscles are interuptin the nerve communication with the brain and thats why i feel dizzy. the therapy isn't fun like a massage...but its not horrible-and its pretty simple-and it seems to work.
shes the first therapist or doc who seemed to know what i was talking about-the others just kept sayinng-nope-its not vertigo...and then wanted to pass out the zoloft.
a friend had an inner ear thing happen and her therapy was banging her head against the couch...and it worked!!! but what i have is different.
my therapist apparently "created" this therapy because she had s many patients with the problem and it wasn't addressed in pt school. she is near portland maine
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
The spinning was the first indication of lyme back 15 yrs. ago. I woke up one morning and the room would not stop spinning. I could not focus my eyes on anything. It cause extreme nausea. I went to the emergency room and after 3 days there the diagnosis was lyme. But they would not believe the lyme titer test. Here I am 15 years later and the same think happened. Everything was spinning out of control. Went to the emergency room, confused as to how the lyme could come back. Now I have been waiting over a week for test results from IGENEX and Med. Diag. Lab for results so I can start on abx again. The spinning will sometimes occur when I just roll over in bed.
Posts: 20 | From California | Registered: Mar 2006
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posted
A lot of interesting feedback!! A lot to think about.
I, too, have felt like the floor was moving up and down -- as if I were standing in a small boat gently rocking on the water (or the feeling you get for an immediate second once an elevator stops). When you're just walking across the living room, this is a mighty unpleasant feeling. It was one of my first symptoms after infection, in fact. You want to stop the floor from rolling up and down!
But no, this is different, this is true vertigo, horrible spinning. (Remember going on the Tilt-a-Whirl at an amusement park? To think I paid for that sensation!) The curious thing is that it only occurs (so far) upon awakening in the morning (never when awakening from, say, an hour nap). My neurologist can't tell me why and my ENT doc can't tell me why, but my LL nurse-prac. really thinks it's Lyme related. It's that strangeness of having it happen after sleeping all night that's the puzzler. I'm happy to say that it does respond to Antivert or Bonine.
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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