posted
dear all, i am experiencing vertigo, dizziness and several times i have woken up with my eyes rapidly going side to side. i can not control them. anyone have any knowledge around this topic? please advise.
Posts: 65 | From Just Maine | Registered: Jul 2012
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
You might have BPPV--benign proximal positional vertigo. Little crystals in the semicircular canals of the ears get misplaced. A good audiologist or physical therapist can show you maneuvers to get them back in place. You might need to see an ENT for referral or your GP.
If this mainly happens when you roll over in bed or lift your head or move it side to side it is likely to be BPPV, but the good news is that it can be fixed!!
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8946 | From Illinois | Registered: Aug 2004
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posted
Get a "Tilt Table test"
Posts: 789 | From CT, | Registered: Jun 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry to hear about this. I know it's a rough ride as I've had all that myself. I hope it is BPPV as that would be the easiest thing to address.
Did you have any kind of inner or middle ear (vestibular) diagnosis before you started treating - assuming you've started treatment already?
Are you taking minocycline, zithromax or Biaxin?
In that order, those seem to cause the reaction you describe. You may need to back down the dose and taper up slowly.
If minocycline, you may need to switch if this does not subside soon but it may within a couple of weeks, according to many.
This is likely a "herxheimer reaction" and you may need better liver support - but there are several things that could be going on.
If you've not yet started treatment, my guess would be the toxicity of lyme is overwhelming your body.
Call your LLMD on Tuesday if it's not better.
MAGNESIUM is the very best support to calm nystagmus.
It helps with vertigo & dizziness, too, but GINGER CAPSULES & B-6 are also important.
There are some drugs that may be stronger, though so ask your LLMD.
It can get better and can come and go when one is more tired and more toxic.
As you say your eyes "rapidly go from side to side" that could be SCD - and a neurotologist would be the best to assess that. But many are not aware of SCD as it's a fairly newly discovered condition.
Still, if this is new, and you've just started treatment, my guess is that it's related to toxicity and the effect on the inner ear.
Is your LIVER SUPPORT all that it should be?
Are you treating too aggressively?
Al's suggestion for a "tilt table test" is likely because NMH or POTS is common with lyme and that causes the blood pressure to drop when it should increase a bit - and we can feel woozy and if that affects balance, then the whole inner ear system can be affected - and that includes vision.
As hiker53 wonders, this could be due to BPPV and, if so, the "EPLEY Maneuver" could be of help. If not BPPV, though, that will not help. It's detailed in the Tinnitus thread below.
Most likely, though (or in addition) there are other things going on as nystagmus is a frequent symptom with lyme due, in part, to toxicity.
Toxicity in the body is first noticed by the inner ear system. When it's affected, so much else in the body can go off kilter, including our vision.
Liver support helps. Ginger helps.
Some drugs can cause nystagmus so do look over the side effects list for all you take.
LIVER, KIDNEY & HERXHEIMER SUPPORT LINKS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When you rest, lie at a 30 degree angle with whole torso elevated at the hips so as not to strain your back.
Head should be higher than feet.
As the inner ear does not normally have very good circulation, with a slight elevation, this is the best angle for circulation. This can also help decrease inflammation that can make vertigo and nystagmus worse.
Be mindful to wear good solid footware and pay attention to where the soles of your feet are when you walk. It helps with balance.
If you don't have Ginger Capsules on hand, go to your kitchen spice cabinet and use the ginger powder there - mix up a little bit with warm water as a tea . . . or put the powder into an empty capsule until you can have someone go buy some ginger root capsules for you.
Hope you feel better. Sleep will help. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
jaon, I also have nystagmus. It developed after sudden hearing loss that I had before we knew I had lyme disease.
I used to have the same sensations as you and eventually learned that I had lost half of my vestibular functioning after having an Electrocochleography (ECOG) by my ENT. The damage and nystagmus were on the same side as my hearing loss.
My ENT was perplexed by this because I hadn't ever had the drop down vertigo attacks that often go along with vestibular damage. (Meniere's Disease). But I did have some mild vertigo when changing positions in bed.
He diagnosed me with an atypical form of Meniere's Disease, which means that your Meniere's symptoms are SECONDARY to another condition. In my case, it was lyme disease (and/or co-infections).
My LLMD believed that lyme had inflamed my 8th cranial nerve, causing many of my symptoms. I believe there is still quite a bit of inflammation there.
I have recently located a lyme literate ENT that I will be traveling to see out of state. Feel free to PM me and I will be happy to update you next week with any information that might be helpful to you.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Again thanks to all, so glad you are all here for me. To clarify, I have not yet been diagnosed ~ my first app with my new LLD is Sept 27. Can not wait... I have had way too many symptoms, tests, specialists and I continue to decline. So Keebler, I am not yet on meds for Lyme. This problem that I have has been going on for several years. I mention it to any doc I see and they usually blow me off. My old PCP who I recently "fired" sent me to a ENT specialist. I waited for an hour to see him, I was on time-he was not. He saw me for 15 minutes and said that I was fine. To be clear i do not vertigo like the room spins. I do have a positional problems meaning that I get dizzy, need to grab on to something, tilt to the left, and am very unsteady. I have stumbled down stairs, fallen off of chairs, fallen on the floor and been just plain clumsy. Unusual for me because 4 years ago i was in great shape and pretty athletic. I will say when I have balance issues, and eyes going side to side it is accompanied by pressure in the head. I have also had Bell's in the past. I had it for a year, lost eyesight and hearing on my right side and it was a long recovery. Vision and hearing are back now. dbpei~i feel very akin to you and your story, would like to know your results next week and can PM you, if I can remember ha!
Posts: 65 | From Just Maine | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- joan,
many cannot read solid text. Paragraphs of 3-4 lines, max are best if you want more to read and offer replies.
Breaking up your post with some "breathing room for the eyes and brain": -----------
Again thanks to all, so glad you are all here for me. To clarify, I have not yet been diagnosed ~ my first app with my new LLD is Sept 27.
Can not wait... I have had way too many symptoms, tests, specialists and I continue to decline. So Keebler, I am not yet on meds for Lyme.
This problem that I have has been going on for several years. I mention it to any doc I see and they usually blow me off.
My old PCP who I recently "fired" sent me to a ENT specialist. I waited for an hour to see him, I was on time-he was not. He saw me for 15 minutes and said that I was fine.
To be clear i do not vertigo like the room spins. I do have a positional problems meaning that I get dizzy, need to grab on to something, tilt to the left, and am very unsteady.
I have stumbled down stairs, fallen off of chairs, fallen on the floor and been just plain clumsy. Unusual for me because 4 years ago i was in great shape and pretty athletic.
I will say when I have balance issues, and eyes going side to side it is accompanied by pressure in the head. I have also had Bell's in the past. I had it for a year, lost eyesight and hearing on my right side and it was a long recovery.
Vision and hearing are back now.
dbpei - i feel very akin to you and your story, would like to know your results next week and can PM you, if I can remember ha!
(joantheboane in Just Maine) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Joan,
your symptoms sound exactly like many that I've experienced. Very common with lyme and all the other TBD (tick borne diseases), too.
You might call that LLMD's office and ask if there is anything they could suggest for the the next 3 weeks before your appt. -
If they don't or can't suggest, you might ask them if taking allicin or olive leaf extract might be okay (if there is any blood to be drawn that day).
I've never been able to get proper treatment so have tried to make other things work. While I'm no success story by any means, I can say that certain herbs have helped to varying degrees and you might find either allicin or OLE to help get you over this bump.
Magnesium & Ginger are key, too, but unlikely to affect any tests other than one for inflammation, perhaps.
Many ENTs are simply not experienced enough to deal with those who have lyme. I had some very bad experiences with many until
I found a super neurotologist who suggest I had lyme (but could not treat me when my tests returned positive for several TBD - and still offered me steroids). But he seemed to be the only one who understood and had he not suggested lyme, I may not have survived.
Your vestibular symptoms can probably be addressed by your soon to be LLMD, yet, if he thinks you need a vestibular specialist, it's best to await direction for one who may be at least LL aware.
In the meantime, the Tinnitus thread is chock-full of detail that may help.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I think you said you take 500 mg of magnesium a day. You may need four times that amount, up to 2,000 mg in divided doses 3 or 4 x. Never all at once.
You'd increase slowly to bowel tolerance and then back down a bit. Natural Calm by Peter Gilham is a good type. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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