posted
I feel like I am on a boat, or sitting in a never ending rocking chair.
Does anyone know what causes this feeling?
This symptom isn't constant, and varies on severity, but I have it almost everyday.
Nothing seems to trigger it, and it definitely is not a side effect from medication (had it before I started meds).
It does seem worse when I am in an enclosed space. Not as bad when I am outdoors.
Ironically, when I am driving, I feel great! No dizziness!
Posts: 146 | From California | Registered: May 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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This is less noticeable when you are driving, you are focused on the road ahead. My guess if you were a passenger, this would not be the same. And, how do you feel when you are stopped the first in line at a red light and the cross traffic moves across your field of vision? My guess is that may not be as pleasant as just driving with nothing crossing your path.
It is also better out of doors because you don't have sharp architectural lines or other objects of varying shades of color and hue, or patterns, vying for attention closer to your eyes. Vision is greatly affected with the vestibular system (inner and middle ear system) is off kilter, even by a little bit.
What you describe does sound like classic inner and middle ear involvement with varying shades of vertigo -- vertigo can be different than regular dizziness and can include that "mal de embarquement" effect (like you just got off a boat or feel as if on a boat when you are not) that you seem to be experiencing.
That is very common with lyme and other TBD (tick borne disease).
This is also a common side effect of 3 particular antibiotics (minocycline, azithromycin and biaxin) but also of other drugs, too.
Ginger capsules or ginger tea may help.
Be sure to look up the VEDA website in the thread below for more information. If you had a head or spine injury recently, such effects can also be a result of that.
If this is bad, tell your LLMD. If you see any inner ear specialist, that person should be referred by your LLMD as, otherwise, they are usually not lyme literate and that makes a huge difference in this area.
Many ENTs and neurotologists like to give steroids and that is contraindicated for lyme patients - big time - steroids can make it worse.
There are some particular exercise that may help - called vestibular rehabilitation -- and Tai Chi or Qi Gong are excellent to help, too.
Yoga for the Eyes, a book, DVD and some clips on You Tube is also helpful.
posted
I've had this for 10 years. It can be vestibular migraine. Yup, driving is good, it's after the stop that's the problem.
For me it's related to the excess immune response triggered by the infection. One possible culprit is inflammation pressing on the vestibular nerves, creating the sensation of movement. When you are actually moving, as in a car, that feels best because then all body systems are detecting movement and are thus coordinated.
I've found no magic potion. Anything that boosts GABA helps me, but none are long term solutions because the brain rapidly adjusts and you become dependent/addicted.
Posts: 727 | From USA | Registered: Mar 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
YES!!!! The 'on a boat' feeling I had in the beginning of treatment! It was awful. I could sit still or even lay down and feel like I was rocking back and forth or on a bunch of waves riding up and down and back and forth. I have it on and off again some days. It has gotten much better with treatment though. It got much better in the beginning of treatment for me luckily. Though it still comes and goes once in a while.
-------------------- 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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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I had this when I first discovered I was vitamin D deficient.
Doctor asked me how I felt
and I told him-
you know how you feel when you have been on a boat all day and get off.
You still have boat legs and head.
And he said yes.
And I said Well I have that all the time.
I think it goes with the D and neuro symptoms.
Has it gotten better with the meds?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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"...Symptoms most frequently reported include a persistent sensation of motion usually described as rocking, swaying, or bobbing; difficulty maintaining balance; extreme fatigue; and difficulty concentrating ("brain fog"). Other common symptoms include dizziness, visual disturbances (such as seeing motion, inability to focus etc.), headaches and/or migraine headaches, confusion, and anxiety. Many patients also describe ear symptoms such as hyperacusis, tinnitus, "fullness", pain, or even decreased hearing. Cognitive impairment ("brain fog") includes an inability to recall words, short term memory loss, and an inability to multi-task.?
Posts: 371 | From CT | Registered: Jun 2008
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quote:Originally posted by Pinelady: I had this when I first discovered I was vitamin D deficient.
Most lymies are low in 25D because the infection excessively converts it to 1,25D. Many of us are high in the infrequently tested 1,25D.
Taking steroids (vitamin D is a form of a steroid) stopped the dizziness for me, ostensibly by turning down my excess immune response. This immune supression effect is why steroids are considered dangerous for those with active infections.
While steroids like prednisolone and vitamin D may mask your symptoms and make you feel better, they won't help you recover. My preference is to treat the cause rather than the symptom.
Posts: 727 | From USA | Registered: Mar 2006
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posted
This symptom hasn't really gotten better with treatment for me.
Thanks Keebler for the links. It sounds like a lot of things can cause dizziness like this.
I just want it to go away. Has anyone found going to an ENT or other ear doctor has helped?
Posts: 146 | From California | Registered: May 2008
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Flying set mine off and it lasted several weeks, but is gone now.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I have this too!!! My Holistic doc also said I needed more Vitamin D so I just tripled my dosage.
It has gotten slightly better with treatment I hope it goes away soon for you and everyone dealing with it.
This was the symptom that lead me to my LD Diagnoses to begin with.
-------------------- 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
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Lea,
How far are you along in your treatment?
And, are you taking vitamin D3 ?
Also, B-12, B-6 and folic acid help the ears as does Beta Carotene (not synthetic vitamin A but the real beta carotene).
In addition to the lyme, if the liver is overwhelmed, this can create more pressure in sensitive ears. What is your liver support?
You don't have to answer the questions, it's just a check list.
An ENT or neurotologist may be able to help if this is from something other than lyme. It may be a good idea to rule out other causes.
If you are also sensitive to noise, you might look at the video at the Tinnutus thread about SCD (superior canal dehis....) . That can also cause this kind of vertigo at times. You would need a very specific CT scan and other tests for that. You don't want that, though, so I mention this only in hopes of ruling it out.
But be very careful if they suggest steroids - avoid those. Vitamin D is natural to the body and that is okay - good, even.
Vestibular rehab can help but will go only so far if lyme or other infections still require further treatment.
Vestibular rehab can give you some skills to protect your safety, though, regarding walking, etc. But, if you do that, I hope you could find a therapist who is LL so they will understand all that you deal with regarding energy and rest requirements.
I don't think you have this form of vertigo but if this might be BPV (benign positional vertigo) there is a physical modality for that called "The Epley Maneuver" but it only works for BPV that is caused by crystals getting stuck in the ear canals.
And- for the mal de embarquement - if you have a water park near you that has a wave pool - if you are strong enough to swim among lots of people and also all that chlorine - "jumping" the waves, treading water in the waves, has actually helped relive the vertigo from mal de embarquement patients.
It may or may not be carried back over to land but there have been some reports of that helping. This comes from people who were so sea sick on a cruise but did fine swimming in the waves. I'm not necessary suggesting this but saying that it is something to think about. Still, if lyme is connected, this would not work.
You may just need to treat lyme longer. If you are near the end of your lyme treatment and still have this, have you also been assessed for other TBD (tick-borne disease) or other chronic stealth infections such as Cpn, HHV-6, mycoplasma?
quote:Originally posted by Keebler: But be very careful if they suggest steroids - avoid those. Vitamin D is natural to the body and that is okay - good, even.
Those two statements are self conflicting. Steroids are natural to the body too, but that doesn't make them OK in lyme. Meanwhile, vitamin D is OK even though it's a steroid?
Lea, be sure to have your 1,25D checked. It's the bioactive form of vitamin D. If you are like me, it will be high. I did not begin to recover until I limited my vitamin D intake.
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-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I was too tired to clarify my statement above about steroids. So, after a rest, here's the best way I can answer that:
Pharmaceutical steroids, given in the amounts that ear doctors use, are not normal in the body.
Often given by ENTs, oral prednisone at pharmaceuatical doses is not natural to the body. Nor is the other steroid stuff ENTs like to drip into the ear canal and add to an IV at the same time. It's the pharmaceutical doses of steroids that cause lyme patients disaster.
However, if hearing is ever at risk, just as with a life, eyes or lungs at severe risk, with the exact antibiotics in the right amounts, steroids can help in an emergency. That is outlined in Burrascano's guidelines below.
But back to the kind of pharmaceutical steroids that ear doctors often use, I've seen and heard of many lyme patients with ear problems get much worse with that kind of treatment.
However, vitamin D is a different story. If a person is deficient, It can HELP. Details below.
D3 is preferable to D2. Again, I'm too tired to back that up, but the research is out there on why D3 is better.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids.
. . . .
From page 12:
Excerpt:
. . .
More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
. . . .
Page 20:
. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example).
From: NUTRITIONAL SUPPLEMENTS IN DISSEMINATED LYME DISEASE
J.J. Burranscano, Jr., M.D. July 2008
Excerpt from page 4:
VITAMIN D
Surprisingly, most people in America are vitamin D deficient. In the lyme patient, low vitamin D levels can cause diffuse body aches and cramps that are not responsive to magnesium or calcium supplements.
Some also believe that vitamin D is essential for normal immune and hormone function. I strongly urge you to have a fasting blood level drawn. It is recommended that blood levels be in the upper half or the normal range.
If it is not, then 2000 to 4000 units daily are needed for several weeks to make up for the deficit, and then a lower maintenance dose may be necessary, based on results from repeated blood level monitoring. If vitamin D is needed, improvements take 2 to 3 weeks to note, but are well worth the wait.
(Quest) Lab Acknowledges Problem With Vitamin D Test
By ANDREW POLLACK
Published: January 7, 2009
LOS ANGELES --
The nation's largest medical laboratory company provided possibly erroneous results to thousands of people who had their vitamin D levels tested in the last two years, the company has acknowledged.
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
This symptom always gets much worse for me on Bartonella treatment (and I still test positive despite prolonged Bart treatment), so I wonder if it's due to Bartonella only, or several of the tick-borne diseases (I have five that I know of).
All I can do is hold onto walls when I walk, hold onto the shower wall, hold onto my chair at the computer or take a break from being at the computer, at the times that I do get the symptom. While I was on Rifampin, this symptoms was very severe.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
I have been treating lyme and babesia for almost 9 months, and I just started treating bart (1.5 mos).
I don't take very many supplements. I take probiotics, primrose oil, and a multivitamin. I do not take vitamin D, and have never had my vit D levels checked.
I am currently on levaquin, malarone, and omnicef. Also, nystatin.
Posts: 146 | From California | Registered: May 2008
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