Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi, So this happens to me some days. Not all, but some. Is this common? My non-diagnosed brother was/is also familiar with this. He is apparently trusting the Elisa test instead of doing the Igenex that I ordered for him.
It almost feels like I'm going to fall sometimes because it feels like I am falling forward when the floor 'moves'.
I am not on anything right now, but am waiting to see my new LLMD on March 12. I am calling tomorrow to make sure they got my prelim bloodwork and tell them that I am available earlier if they get a cancellation.
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Yes! to both, still in Fl and the mattress walk resolved for me early on without dx or tx. It lasted for a couple of weeks. and came back a few times.
Nothing since being diagnosed and treATED...lot's of other things to make up for it though!!!
Sending you warm Florida sunshine, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I got this symptom when I got ill after mono. The neurontologist blames it on an 'inner ear infection' caused by a virus. He said it's irreversible. Nice. He was from Cleveland Clinic.
It never went away. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I think it can go away. I was told my ears were "broken" and that you could not "fix something like that that is broken. Hah! - I say.
I'm not as bad as I used to be, although I have a ways to go. The first point of safety is, whenever this happens to sit or lie down - even if on a sidewalk. This could save injury. More about eye/balance exercises below.
This is very common with lyme patients, yes. And it can come and go. Ginger capsules might help - along with treatment for whatever infections are going on.
Too bad your brother is going with the wrong test. You might share some books and articles with him about that.
Feeling like you will fall at any moment is called "Tumarkin's Phenomenon" - and is described at the VEDA site - Vestibular Disorders Association.
That link, and many more - can be found at this tread below. While inner ear doctors usually do not know much about lyme there are are things that can help (i.e. vestibular retraining).
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Hey Ocean, I get that feeling too. Like I just got off a roller coaster. Dizzy, light headed, off balance.
It happens to me frequently, at least a couple times a week. Makes me walk right into walls, doorways, cupboards, the artificial tree at work...anything!
When it gets bad try to hold onto something as you walk and sit down if you need to. Having to sit down for a moment is better than falling.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I had this sensation when I had acute babesia.
Posts: 1603 | From ny | Registered: Aug 2006
| IP: Logged |
posted
WOW this that is the perfect way to describe it as if walking on a mattress. Its horrible!! I'm sorry your going through this.
This was and is my biggest symptom and the reason I knew something was wrong with me to begin with.
I am on month 4 of my hardcore treatment and I feel like it happens a little less then it use to, so I'm feeling positive like it will go away completely.
I need to stay positive.
Good luck to you I hope it goes away for you.
Melissa
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
| IP: Logged |
posted
what you are describing can be a sign of vestibular migraine, also called migraine-associated vertigo
Posts: 727 | From USA | Registered: Mar 2006
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I was diagnosed as Migrane Associated Vertigo because I have had chronic vertigo for 5+ years now.
Its one of the most disturbing parts of my illness.
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
posted
I had this too. I used to say it was like walking on a cloud but the mattress is even more accurate. I don't know what infection was causing it, I haven't had it for a while and hopw I won't experience it again cause it was awful!
Posts: 81 | From Italy | Registered: Jan 2007
| IP: Logged |
posted
Yes, I've had this as well - the mattress is a spot-on description of how it has felt. I even had a couple of times where the floor seemed to undulate, like go up and down, even though I knew intellectually that it was level, awful.
I still have weird balance/movement issues, but less frequently and less severe...so I'm holding out hope, for all of us! TS
Posts: 566 | From West Coast | Registered: May 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Be sure to always wear shoes - even for a middle of the night trip to the bathroom. The shoes are extremely important for your brain to know where your feet are and, with shoes, stability is increased.
I prefer a sturdy open backed clog such as the Dansko Camilla as a slipper. Great arch support and it really helps my feet know where I am in space.
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Thank you all for your responses and suggestions. I have noticed that this symptom is much worse when I am tired. I didn't notice it much today.
posted
Very common with lyme ! A Tilt table test will offer some answers. Neurally mediated hypo tension.Brain stem involved. Hypothalamus, Pituitary,Adrenal glands involved. Test for Sodium,Renin, Aldosterone and Citrate. Good luck, A
Posts: 789 | From CT, | Registered: Jun 2006
| IP: Logged |
I've had a feeling like this when my atlas is out of alignment. Unfortunately my atlas goes out of alignment often. Sometimes the unsteadiness is bad, but not always.
When my neck muscles get tight and my low back/pelvis/SI joint/hip alignment goes out, that can cause the atlas to go out, and often my head tilts a little, too.
I've had dizziness, bed spins, queasiness, visual disturbances like my eyes are jittery, headache, and I tip over to one side, especially going around corners or through doorways.
Massage, chiropractic combination always works for me and I've learned to do some adjustments, stretching, and self-massage at home that help a lot.
I think a lot of symptoms like neurological stuff, weird sensations, structural dysfunction, etc. that people here experience ARE from Lyme and coinfections, but sometimes there are other causes or contributing factors. That's been my experience anyway.
Just my 2 cents worth.
Nutmeg
Posts: 386 | From WA state | Registered: May 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic