Besides being unsteady pretty much of the time, I notice when I wake up and get out of bed in the morning, I always lean to my left side. Luckily my dresser is there, and I use that to hold me up (if I didn't, I would probably fall over.) Then I use the hallway wall to make my way to the bathroom. It's strange though, that in the morning it's always the left side. After a few minutes it evens out.
I am wondering if anyone else experiences this kind of balance problems?
-------------------- Powerful Women's Motto: Live your life in such a way that When your feet hit the floor In the morning, Satan shudders & says� 'Oh ****!...She's Awake!!
posted
I also have this, except mine hasn't evened out on almost 2 years... I am off balance, veering to left and all sorts of other weird neuro stuff for almost 2 years.... Bed/housebound because of it..
Its my worst symptoms.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Vestibular (inner ear/balance) symptoms mixed with neurological symptoms have been the worst part of this for me.
For years, I would suddenly be pulled (as if by puppet strings) from my waist with torso sharply taking a dive - for me usually to the right.
Sometimes, I'd suddenly fall. Tumarkin's phenomenon is the name given to this. It is a vestibular disorder but if caused by lyme/TBD, it can subside with treatment.
But if something or someone moved within my field of vision, all bets were off and it could be any which way.
that has gotten better - but I rarely go out - and still in new environments that happens but to a far lesser degree.
-
I hope you have been properly evaluated for tick-borne infections or TBD (TBD= tick-borne diseases) by an expert LLMD. Some affect the inner ear more than others.
If not, is there any way you can see a LLMD?
(But, as you have over a hundred posts here, I assume you are being treated. Be sure to tell your doctor about this new symptom. As many here are pretty much on their own, if you don't have a doctor, you might explore changes to your treatment.)
So, even if you don't see a LLMD you can call one's office and get the name of a LL neurotologist - a specialist in diagnosing inner ear AND neurological problems. I think it is vital, though, that the referral comes through a LLMD as many ear specialsts, even neurotologists, are not familiar with lyme and TBD.
Also, be aware that some drugs and OTC (over the counter) products are ototoxic or have vestibular toxic effects. It may be that something you are taking is triggering this.
Be sure your diet is totally free of aspartame/Nutrasweet/Equal and MSG in all its forms. (You can Google for those.)
Heavy metals, too, can be connected but a good LLMD can help there, too, as lyme is frequently part of the problem there and treatment needs to go hand in hand.
While I strongly urge the best of evaluation, not everything is lyme, but what you describe is frequently seen with lyme/TBD.
The thread below may be of help -
==========
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links
You will find practical advice at the VEDA site, too. There may be a vestibular disorders support group in you city/town.
Suggestions that will help with safety include:
have a light night on so that you can always see where you are in space.
Always feel the bottom of your feet before you begin walking and give yourself time to feel your center before moving after getting up out of a chair or bed.
Wear shoes. Shoes with good soles as an athletic shoe can keep you from tipping over sometimes.
Ultimately, if lyme/TBD are involoved, treatment is important. However you can do that, I hope you can find what you need.
Tai Chi and Qi Gong are helpful to retrain the brain along the way. A trampoline should be avoided for now.
If you ever feel like you are going to fall, sit down. No matter where you are. I used to wear clothes that were only dark as I'd literally sit on the sidewalk many times during a day. I learned to do this only after many, many falls.
A specially trained physical therapist (PT) can help with vestibular training. Again, it's best to have someone referred by a LLMD and someone who is LL.
This can get getter. It has for many patients. In the meantime, be careful and always pay attention to the bottom of your feet and how your spine lines up with the earth - so that if you are pulled off center at least you may be centered to begin with and you won't go so far over the edge.
This is one way Tai Chi or Qi Gong really helps - with learning a center of balance that becomes second nature - something like a tennis player always being able to turn this way or that. Placement of feet really matters.
I find that lining up my target helps. As my proprioceptive stuff is awry, my vision is key to keeping my balance. If someone walks in my path, I look to the floor to be sure I can at least see exactly where I'm walking. It's tricky to explain.
If hugging walls helps, hey, go for it. Just be careful in public as a fast opening door can be a surprise.
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Yes, my balance is way off as well. I'm always holding walls or furniture...anything close by no matter where I go. I use to think it was a strange form of dizziness, but not sure that's the case anymore.
For awhile with treatment, it had been going away, but for some reason has come back. I'm now on IV's so hopefully something in those will kick some butt and get this back.
Sure is frustrating. Let me know if you find anything that works.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Yep my balance was very bad for years-
One day while riding my bicycle I just fell over and could not get up at all -- From that point on I went down hill quickly-
I never fell down completely after that I guess because I spent 90% of my time flat out in bed--
One thing I did do was force myself to ride my bicycle to get food from the store- I would go late at night so I could go slow and not worry about cars ect-
I think doing this helped my balance come back
It is hard to do when the room is spinning around I still get dizzy sometimes but I have learned to mostly handle it --
Now my balance is perty good most of the time-
I guess its like Sea legs --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I had this with minocycline, LLMD pulled me off. Are you taking this by chance?
Posts: 3528 | From US | Registered: Apr 2007
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posted
I am taking doxy right now. But this has been going on for a few months. I have the following tests scheduled over the next 2 weeks:
MRI of the Brain EMG/NCV Neurophych screening Misc Blood Work
Curious to see what they find...
-------------------- Powerful Women's Motto: Live your life in such a way that When your feet hit the floor In the morning, Satan shudders & says� 'Oh ****!...She's Awake!!
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
my llmd has me close my eyes and put out my arms and try to stand still.
i can feel myself weaving but he said it's only just a little bit.
he said i'm pretty strong and reflexes are good but the balance is so-so.
i know when i get down in the floor i can't get up without help.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I guess I'm going to sound like the whacko here. I'm in bed even right now on my laptop and I swear my room is slanting to the RIGHT.
It's not like this ALL the time but will come and go with no warning, but it's been like this most of the day. And thinking I"m tough, I decided I could still get clothes out of the dryer and fold them.
Need to be productive you know, but yet again....things go black and WHAM. I don't really even think I"m passing out and it's hard to explain. Fighting head pain all the time and this is just a little more than usual.
In any case, I got my right hip and the right side of my face. The hip FEELS bruised, but I see nothing and the side of the face has a lump on it. Hubby says it will probalby bruise. The hip may too.
But I am NOT on many of the meds any of you are speaking of yet. WHAT IS GOING ON????? My bedroom is slanting. Anyone else have this. Happens when walking down halls too.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
All of my Balance problems were related to Babesia and did not start to go until it was treated.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:My LLMD did a neurologic-type test on me where I had to walk toe to heal across the room like a sobriety check. I could do that no problem. Then she told me to close my eyes and try it. I could not do it at all. It was very difficult and I am sure pretty funny to watch.
When I was at my sickest in the beginning, I did this test as well and couldn't even do the heal-to-toe with my eyes open. When he had me lift one leg only and try to stand still, hah, I fell right over too.
I'm much, much better now with my balance, though there are days where I have balance issues and fall over my own feet and run into things. But it's gotten much better with treatment.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
well i said my balance was so-so....yesterday i flat out walked into the dresser in the bedroom. hit my upper arm and now have this wonderful black bruise covering most of the side.
ran right into it. i saw it, walked by and wham!!!
yeah, right, my balance is fine.....LOL
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Lymers All >>>>>,
I have balance issues as well,headaches tinitis,and High BP.
Have to be careful as I walk into walls,and furniture,and trip over non existant things.
Nuero-lyme is at least part of it for me, white matter leaions on brain MRI from Aug.'06.
Silverwolf Sorta Wobbly Warrior
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Can balance issues comes from Borrelia and Bart as well as Babesia? I had balance issues that went away after Babesia treatment, but can Lyme and Bart cause this as well? what about a herx???
I ask because, these days I rarely have balance issues but sometimes I will during the day and wonder if it can be a herx from the Ceftin I am taking. I just finished my last dose of Mepron.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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