i've had this swinging/rocking/bouncing sensation for several years now & it's driving me crazy!! i'm unable to relax mind & body as feel so dizzy & disorientated. i permanently feel like i'm on a ship in realy rough seas!!! i try explaining it to others & they think i'm going mad!!
Has anyone else had this? Does it ever go away or will i be like this forever?
what tx has helped? is it nerve damage to ear/brain?
i've been on abx for 2 yrs but nothing has helped this. could it be a BART symptom??
thanks -hope anyone can help me Posts: 47 | From SP | Registered: Oct 2005
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posted
I had that as well during my lyme yrs - doc told me that Dramamine (over the counter motion sickness meds) were save to take and to try it - it did work some, but it makes you tired of course.
Also Antivert - that is prescription med.
The feeling like being on a ship all the time was horrible, the floor felt like it was not there, like as if I was drunk all the time. And I also had the spinning feeling even while lying down.
Almost at the end of my treatment for Lyme 1995/6 - I took a course of ceftin - that finally cleared the head and help the ship feeling but it wasn't until I had already gone thru many meds for 7 yrs prior.
The ship feeling is also caused by yeast - therefore a yeast free diet would be helpful.
Posts: 374 | From NJ | Registered: Aug 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I'm so sorry you're experiencing this, because I know firsthand how awful it can be.
When my Lyme really kicked up, I experienced my first-ever bout of motion sickness. It was hard for me to ride in a car on a twisty road (some days on even a straight road), hard for me to be on a boat, impossible for me to go on any sort of amusement rides.
Sometimes, I'd be standing at the top of my stairs, and the whole staircase seemed to shift. Weird, unsettling and very disorienting.
I've been on antibiotics now for about 14 months, and that's one symptom that has completely lifted. Like so many other things, though, I have NO idea what caused the change.
You talked about bart, and I've been on rifampin for that. But, like Lady, I've also taken ceftin.
So, my experience is that this is a tick-borne disease symptom, but I'm not sure which disease or which meds worked to eliminate it. Wish I could help you more, and I hope you're able to find some relief.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Sounds a lot like babesia symptoms to me. My lyme treatment only made these symptoms worse, but since I have been on treatment for babesia, they are gone. I spent years feeling like I was constantly walking through a carnival funhouse (not so much fun). Now it is gone...hopefully for good.
Good luck!
Posts: 393 | From Washington, DC | Registered: Jun 2005
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posted
Thanks for all your replies & advice. It's great to hear from others feeling the same & to know i'm not going crazy!! & a big relief to hear that it's possible to get rid of this sensation i was wondering & fearing it was permanent nerve damage
Lady -i'll try asking my LLMD about those motion sickness meds
Andie -what dose of rifampin did you take? My LLMD has suggested trying this next for bart as i responded well to levaquin but relapsed when stopped it.
docjen - thanks for babesia suggestion - haven't tried that yet - something else to ask my LLMD.
Thanks again for replies -big reassurance i needed Posts: 47 | From SP | Registered: Oct 2005
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yes, these have been my worst symptoms all along, and were the first that came with acute onset (when I realized I was sick).
When I lived in LA, I didn't know if we were having an earthquake (the swinging kind) because I was normally like that.
That is almost gone for me now. It gets triggered by some chemical sensitivities and when I relapse... but for the most part it is under control.
I have found the most helpful to be meclizine at the beginning (but now I am allergic to it - great - allergic to an antihistamine). But my most faithful friend that I carry in my bag at all times has been the 4 hr. over the counter allergy tablets - chlor-trimeton generic.... (chlorepheniramine maleate)! I can't live without it still. It makes me a little sleepy but it is better than not being able to walk straight nor look at people. i often have to take it when out to dinner.
If you can find "Hyland's Motion sickness" tablets (homeopathic) in a health food store, that also has helped me a lot in the past!
I am sorry you have to go through this, but it will gradually get better. I am sure you have been learning what makes it worse with time... eventually those things will fade too. But till then... keep the emergency band-aids in your pocket!!!
Oh, also valium or ativan help it too. But in a different way.
Posts: 589 | From Rhode Island | Registered: Jun 2006
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posted
Hi Luvdogs - thanks for all that advice on meds -the meclizine sounds worth a try.
hey i felt like i was in an earthquake too - that's exactly how i 1st described it to my family - they thought i was crazy! Now i feel like i'm permanently in an earthquake!
interesting what you said about chemical sensitivities as my neuro symptoms are much worse indoors. i feel so much better in the outdoors. so could possibly be chemical sensitivities too?
thanks again - let's hope our earthquakes stop soon! Posts: 47 | From SP | Registered: Oct 2005
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I hope it helps. I am sure you will find your magical combo. It gets better with time. Don't give up. I know it can really be hard. I think it is probably my hardest symptom ever (aside from the seizures that I used to have). I could deal with the numbing, the pain (sometimes), and the insanity (sort of)... but not the dizziness and imbalance.
When I was first sick, I could not walk straight and could not close my eyes to sleep bc of the vertigo. I would have to have a tv playing and a light on when I sletp so the light would come through my eyeballs and help me to focus. I also had to sleep with my feet on the floow or the wall (like a drunk) to stop the spinning.
It also prevented me from driving.
That all slowly went away and then I was left with the imbalance and dizzy spells. And now, those, too, are almost gone. It was torture. Needless to say i don't drink anymore. I don't feel the need to become dizzier
Oh, and definitely the chemical sensitivites... msg, spicey, preservatives, alcohol hidden in food, perfume, gas fumes.. and on and on. That, too, is fading. It does tend to creep back before I come down with a cold - I guess the virus will go straight to my weak inner ear... and torture me there before I know I have a cold. Then I freak out and think I am relapsing. I am relieved when I finally get sick!
Good luck. We can kick this things butt!
Posts: 589 | From Rhode Island | Registered: Jun 2006
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![[hi]](graemlins/hi.gif)
i'm after some help & advice.![[confused]](graemlins/confused.gif)
![[dizzy]](graemlins/dizzy.gif)
& a big relief to hear that it's possible to get rid of this sensation ![[Smile]](smile.gif)
i was wondering & fearing it was permanent nerve damage![[Big Grin]](biggrin.gif)
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