posted
I use to have what docs have said very short seizures.
Haven't had anything like that until recently. I was giving cash to a Shop Rite cashier when all of a sudden I felt a split second loss of balance.
I hurried to my car. Still feeling a slight loss of balance - I tried to relax and drive away - events like this make one nervous - I know God's in control but I'd to be on the floor of a Shop Rite waiting for an ambulance and then being treated by people that know next to nothing about Lyme disease.
Anyone else have an episode like this? josh
Posts: 107 | From new jersey | Registered: Dec 2009
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posted
Yes I did.....several times early in my illness. I usually had a gonna-black-out feeling with it, but as you said, very brief. Scary.
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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posted
I, too, have balance issues. Again, I must say that they were mostly gone after my "cure" years ago with IV antibiotics. I got rid of my cane and my wheelchair.
But they are back again. I should use a cane, but don't...too stubborn. I have learned to extend my arm to grab on to things as I need to. My husband helps me cross streets.
He, too, has been having stumbling episodes. One minute he is fine and then he inexplicably stumbles. We are a fine pair...the blind leading the blind!
Needless to say, we are trying to get him tested for lyme. The VA is being obstinate about paying for it so we are flooding them with data.
Do as I say, not as I do....get yourself a cane. At least use it in public places...call it a walking stick and get one that looks spiffy!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I get it too, worse when I am stretching to reach something. I haven't had it as bad lately but in the beginning before the DX it was really bad.
I am a painter, so when I would reach to do door frames I would all the sudden get really off balance and feel like I was going to fall over. Would have to lean against the door frame or door, or wall, no matter if it had wet paint or not. It was that or fall over.
posted
yes this happens to me quite a bit.....I wonder if this symptom goes away, or is this permanent brain damage?
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
It's not brain damange. it is inner ear / vestibular.
I was only diagnosed with lyme 2 weeks ago on 5/3. But I have had dizziness / drunk feelings since February.
I had what is called Labyrinthitis and am still recovering from it. It is an inner ear inflammation caused by a virus or bacteria (like Lyme.) My ENT originally thought it was viral, but then my LLMD did the Igenex test and it was Lyme.
I don't have room spinning vertigo. More of a wierdness with my vision and balance.
It gets better, but takes time.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
I sometimes get a little wobbly and have to touch walls and furniture when I walk around, probably from stiff muscles and joints in my legs. Occasionally I also get that blacking-out feeling when I stand up too quick.
So far I don't think I have really had inner ear balance issues, though I have had an intermittent sound like high pitched electronic Morse code in one ear sometimes.
A few minutes ago, I had a split second loss of balance at work, NOT due to Lyme but due to catching my foot on the corner of a box.
I then went flying across the room and landed flat out sprawled facedown on the floor, dropping everything I was carrying, much to the mirth and entertainment of my coworkers (once they figured out I wasn't actually injured; just a slightly scraped knee).
Big adrenaline rush, kind of like a free carnival ride, haha. Just think how much fun balance problems can be.
Everybody be careful and take care of yourselves, and hang onto things so you don't take a flying leap. Unless you're feeling particularly adventurous.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If one "sometimes get a little wobbly" and has to touch walls and furniture when walking around . . .
That does point to an inner ear situation. Stand right next to your bed or a sturdy couch or chair - maybe with someone else around to support you and prevent a fall in any direction.
Close your eyes. What happens? If you get tipsy, wavy, wobbly or fall onto the bed or couch, that is inner ear signal stuff.
If you are walking and someone moves between your eyes and where you are looking, what happens? If that disrupts your train of thought, your body action for even a split second, that points to inner ear signal stuff. (More appropriately called a vestibular disorder.) It's very common with lyme. Very. But it can get better.
Addressing infection(s) is of utmost importance as lyme really hits the inner ear in many different ways. In the meantime, Ginger capsules can help. So can vestibular rehabilitation and Tai Chi.
Much more in the links above but here's a basic description for anyone who has to touch walls to know where they are in space:
Proprioception - from Latin proprius, meaning "one's own" and perception) is the sense of the relative ...
Excerpt:
. . . proprioceptive sense is believed to be composed of information from sensory neurons located in the inner ear (motion and orientation) and in the stretch receptors located in the muscles and the joint-supporting ligaments (stance).
==========
Be sure to look all through the TINNITUS thread above as that has much more detail for all matters vestibular. And get some Ginger capsules. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- joshzz,
Although most neurologists don't know anything about this (my neurotologist sure did, though) -- the inner ear can be a trigger for certain kinds of seizures. I have had the full range, all triggered from my inner ear.
However, there are many things that help (all in the Tinnitus Thread).
As for driving, it's best not to drive if you feel unsteady. If the inner ear is involved if something unexpectedly moves into your line of sight, that could be dangerous for you and all others around.
Get this checked out. Be sure to discuss this with your LLMD. And see that Tinnitus thread as there are lots of check-list questions about this and it could be that one simple adjustment in your protocol will help.
Mostly, avoid all those big box stores. The lighting, the fumes from the plastics and textiles, the cleaning chemicals, the noise . . . it's all a huge barrage that your system needs to stay away from until you are much, much better and further along in your treatment.
And, oh, take it from me - an ambulance for anyone with inner ear dysfunction is a torturous experience all way around. The sirens, the lights, even the beepers and tiny (but earthquake intensity) "speakerphones" on the EMTs' shoulders. Avoid at all costs. Learn all you can to maintain your own safety at all times.
As your belief is that "God is in control" . . . you may want to pray to God to access your inner calmness and wisdom -- but still, very much so, row your boat to shore. Get educated. Then you will have the skills you need to assess what is going on and what actions you need to take at any particular moment in time.
Work with your LLMD on this. He or she may want you to see a LL neurotologist or get some vestibular training. Tai Chi is excellent. And, again, GINGER capsules will be your new best friend. GINGER will be the star player on your team.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Before being diagnosed on 5/3 I was told I had Labyrinthitis. So in March / April I spent a lot of time on the vestibular boards like dizzylounge, meneirs, labyrinthitis.org.uk, etc.
Trust me, people, you do NOT want to have a bad vestibular issue. There are people on those boards who have had bad vertigo 24/7 with no help. If you think Lyme is tough to treat, try a vestibular system. At least with Lyme, there is a root cause and while treatment is challenging and controversial there is hope that if you eliminate the problem with the proper treatment you will get better.
With vestibular issues like Meniers or MAV (Migrane Associated Vertigo (you don't need to have headaches to have this)), cervical vertigo, Viral Neuronitis and Labyrinthitis there is little they can do. Dizziness can be caused from a wide wide variety of things and it is so difficult to know which one. Muscle, chemical, vascular, nueral, etc.
For me...I'm not really happy about having LYme...but at least it explains my Labyrinthitis and all of my ear symptoms. I'd rather know the beast I have and try to beat it than have a vague illness and not know what to do.
I have an appointment with Dr. Rauch at Mass Eye and Ear in late June which I made in March. I will most likely cancel now that I know I have lyme and my balance is a bit better now.
As keebler says...they key to getting your balance back is to challange your system. You want to compensate for any damage and you can't do this sitting on your butt. But don't over push it. Often stores are the most bothersome. They were for me, but are now much better.
My ears are still a problem. I would say they are my #1 issue with Lyme. But I'm thankful that at least I have my balance / vision back most of the time.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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lymeboy
Unregistered
posted
I have been dealing with these issues for a year. I began treatment in Feb. I am currently on IV . My symptoms have only gotten gradually worse. I am not only completely off balance, I have become totally depressed again, with morbid thoughts and extreme rage. I eat hunks of raw Ginger every day. My ears have been clogged for over 4 years now. I am a total mess. I dont know that I am "herxing". I think I have either been given a Placebo, or the IV does not work. I literally feel like my brain is decaying, as it is less and less functional with each day. I am frightened and depressed and I do not believe that god is in control. I believe I got handed a raw deal with a lousy disease that no one really wants to treat properly.
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I have had some split second loss of balance issues...probably less severe than the one you described.
I wonder what people are thinking when I am walking up the aisle at church to take communion and all of a sudden I do a little side step to catch my balance.
They probably think I was already drinking the wine...lol.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
quote:Originally posted by lymeboy: I have been dealing with these issues for a year. I began treatment in Feb. I am currently on IV . My symptoms have only gotten gradually worse. I am not only completely off balance, I have become totally depressed again, with morbid thoughts and extreme rage. I eat hunks of raw Ginger every day. My ears have been clogged for over 4 years now. I am a total mess. I dont know that I am "herxing". I think I have either been given a Placebo, or the IV does not work. I literally feel like my brain is decaying, as it is less and less functional with each day. I am frightened and depressed and I do not believe that god is in control. I believe I got handed a raw deal with a lousy disease that no one really wants to treat properly.
Lymeboy...so sorry to hear about this. If you have had it for so long and have started IV, then you are on the right path. Check out wildcondor's post / story.
I'm no expert and not a doctor, but it does sound as if you are herxing..just it is a long herx. wildcondor herxed for 2 years straight but made it through the other side. Keep the faith!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- lymeboy,
yes, lyme is a very raw deal. It's normal and even healthy to acknowledge the hit. It's normal to be depressed.
Raw ginger does not have the same therapeutic dose as capsules. And raw ginger can burn. You might try capsules working up to the top therapeutic dose.
I see that you posted on 04 March, 2010 for a LLMD. And on 21 April, you posted:
Quote: " . . . I will be getting 2g rocephin /day. I think this is what LLMD's do prescribe as a standard. I have not been given a combo regimen, whatever that may be, but currently, there will only be this heavy dosage for 4 weeks and then more IM therapy.... (end quote). --------
So, you are in the roughest patch. Hold on. With treatment, especially IV rocephin, many have seen inner ears symptoms get better. But it can take time.
And, as not everything is lyme, ask your LLMD if he thinks you might need to see a LL ear specialist.
Be sure your liver support is all in place. Again, the Tinnitus Thread has a full section on liver support and its importance to the ears.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Rocephin for me worked best with 250 mg of zithromax taken either daily or every other day.
Posts: 107 | From new jersey | Registered: Dec 2009
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