Topic: Something scary just happened and I don't know what it was
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I was sitting at my computer when suddenly it felt like I was falling forward at breakneck speed. Like my brain tried to hurl itself at the floor or something.
It was a vertigo type feeling, very fast and hard and only lasted a few seconds. The first thing I did was yell out and grab the back of my head (I don't know why I grabbed the back of my head but somehow I related it to something back there) Then I just felt a little dizzy for a moment or two.
Has this ever happened to anyone? What the heck just happened to me?
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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They have recently started to let up for me- a nice feeling after 3 1/2 years of this everyday.
Do you have any "regular" dizziness besides this event?
I have had a continuous off balance/woozy feeling until recently, as that is starting to break up as well.
It sucks!
Posts: 819 | From East Coast | Registered: Apr 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I don't have dizzy spells, but I do feel off balance a lot. This wasn't like being dizzy though. I do sometimes get a "woozy" feeling.
This was like my body mentally slammed forward towards the floor. Like my brain had an attack or something it was SO weird feeling. Like dropping on a roller coaster except 100X faster.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I say call your LLMD but, as it's the weekend, you should call your GP. They thing is that most GPs don't realize how common this is to lyme - but your GP can help you rule out other concerns and that is important.
URGENT MEDICAL CARE MAY BE NECESSARY (in case of stroke):
I'd make that call to your GP right now. If this were to have been some sort of stroke, the sooner you get medical care, the better. If your GP is not available, I'd go to URGENT CARE - and let someone else drive. You should not be driving for a few days until this is better assessed.
After your GP (or LLMD) has ruled out other things, he may refer you to an excellent LL neurotologist for further evaluation and vestibular training.
Be aware that any ENT, neurotologist or ear specialist should be LL. If not, well, since not everything is lyme you may still find good diagnostics but many ear doctors like to give steroids. Steroids can be horrible for lyme patients, as steroids make lyme blossom. So stay in close contact with your LLMD before you'd consider that route.
This used to happen to me all the time.
Backing up, have you been eating regularly? Low blood sugar and adrenal dysfunction can trigger this sort of thing.
Is your blood pressure generally okay these days?
My guess is that it's related to the inner ear and that "event" would be called Tumarkin's Otolithic crisis -- but call your doctor in case it's something else. Vertigo attacks can be from the vestibular system (ears), the brain, the heart . . . so be sure to talk with your doctor.
Be very careful and rest at a 30% angle (head higher than your legs) as that is the best position for the inner ear.
What you describe is very common for lyme patients. Very common. In the tinnitus thread are suggestions to lessen symptoms.
Are you on zithromax, minocycline or Biaxin? Those are the most common ones to affect vestibular function but lyme, itself, does that, too.
Check all your other meds for side-effects listed.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
=====================
You can also search at Google: "Tumarkin's Otolithic crisis"
"Drop attack" is also a term used but there is also a kind of seizure that is a "drop seizure" - it may be one and the same, but not necessarily.
Being suddenly slammed forward - as if by some power other than your own - is a hallmark of Tumarkin's.
Ginger may be your best friend. It's best to AVOID all movies this weekend (your eyes are so connected to the ears). No roller coasters or roller blading for now, either as your ears and brain are in a very tender place and you don't want to further irritate things.
-
[ 02-06-2010, 03:27 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Thank you Keebler. I may go to Urgent Care as both my GP and LLMD would be unavailable right now. Luckily, my LLMD is also a neurologist.
I'm not on anything except for a 40-day protocol of herbs (mostly part of Bhuners protocol..but really low dose and I've been on it a few days without anything wrong except a little more joint pain.)
But.. recently my heart palps started back up... about two weeks ago. They are getting more and more frequent. I've seen a cardiologist and had the full workup twice and nothing found abnormal.
Also, seen a neurootologist (uh..neuro ENT) right before I got diagnosed with Lyme who couldn't find much wrong and he did extensive testing too (this was over two years ago)
I do have history of some sort of seizure... not the kind where you fall and shake around but definate seizure activity. I'm on Klonipin for that and myoclonus and ataxia. (I think it's called ataxia) I've been really doing well actually for the past couple months since stopping abx due to yeast issues.
And this happened while I was playing a game on FB..so it makes me wonder if it was seizure related? It was so quick though. You are right, going to avoid computer stuff and movies. I already can't handle things like roller coasters and 3D movies.
Thanks for all the info. Also glad to know its very common with Lyme. (I've had this disease 22 years at least undiagnosed) Been treated for 2 years and went from dying to very functional. But mostly neuro/cns issues.
Thanks again.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Oh also something to add, I don't know if it has anything to do with it. But for the past few weeks I can not lay down with the back of my head on anything (not even a pillow) without feeling like I'm falling backwards when I close my eyes. I have to sleep with my head turned to the side.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Hey, FWIW, I've been on the Buhner herbs, too, and the andrographis has helped my inner ear a great deal. Seizures have been greatly reduced by andrographis. It's the only thing I can now afford. Still a long way to go but this has helped me a great deal. ------------------
While that could still be brain stuff and you need to tell your doctor, the good news with the positional change element is that this may be one particular kind of vertigo for which an easy treatment can work.
You might want to see a good otoneurologist who will do a full work-up and if you are found to have BPV (or BPPV), then the "Epley Maneuver" may just be your ticket. It only works for that one kind of vertigo, though, and can make other kinds worse.
More about that in the Tinnitus thread above and in the VEDA link.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry for so many links. I tried to add this to the last one but half of the post disappears sometimes when I try to edit in stuff.
You said: " . . . this happened while I was playing a game on FB . . . ." -- I don't know what FB is. FaceBook? My guess is it involved electronics and a screen - and that can cause disruption of inner ear stuff for sure.
-------
Klonipin made this worse for me. I could not tolerate Klonipin at all as it increased vertigo and muscle weakness and actually caused more seizures for me. Could be because it's hard on the liver and I deal with porphyria so my liver is already taxed.
I am thrilled that the androgrphis has helped so much. It does make me very tired, though. Allicin worked well to lessen seizures and did not increase fatigue but it raised tinnitus for me (a rare report - though - so it may work for you). Allicin is GREAT to help the inner ear. Ginger works in a different way but be sure to get ginger CAPSULES for the therapeutic dose.
There are links galore in the Tinnitus thread - so be sure to read those as LIVER SUPPORT is vital to helping the inner ear function, especially for lyme patients who deal with so much toxicity.
Good luck.
For TV, travel videos may be okay - but while I love his work, I find Art Wolfe's programs to be a bit jarring when he does sharp "fast shutter" cuts between photos - most other travel programs on PBS are very nice and easy on the eyes and ears - and the diversion is a treat.
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I didn't know Klonopin was hard on the liver. ugh. I've been on it for a year now.. .5 mg 2X daily. Liver tests are still really good. Pretty low dose I guess.
Another thing I forgot to mention..this has happened a few times in the last month or so... suddenly my vision gets weird... it feels like my right eye is set further back in my head than my left eye. So it feels weird to read etc. It doesn't last long but it's happened a few times.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 0.5 mg and with good liver tests - sound fine. My guess is you ARE taking liver support, too, right? So, you should be covered.
I'm just so very sensitive to all chemicals so I can't do it. If it works for you, great. I just mentioned it because it increased my vertigo and drop attacks and because some lyme patients also have porphyria of one type or another and Klonopin (clonazepam) is listed as an unsafe drug for porphyria patients.
And that is why I want to be sure you are taking good liver support. Excess porphyrins will not show on a normal liver test but good liver support may help keep porphyrins down to a safe level if this is an involvement for you.
Be sure to read the Vestibular Symptom list above. Explains a lot about what eyes have to do with ears.
Get "Yoga for Your Eyes" DVD training method. It's very good for vestibular training, too. Tai Chi or Qi Gong would be excellent help, too. Qi Gong is easier with far less head turning.
I can only do very limited Tai Chi due to all the head turning.
Avoid bouncing on a trampoline right now. Swinging on the rafters should wait, too. -
[ 02-06-2010, 04:54 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
IckyTicky, do you have Babesiosis? I have had this feeling and heart palpitations from it.
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
When I was at my worst, I could not even stand to scroll on the computer, it made me so dizzy. I
thought it was a brain/eye malfunction from the infection. Maybe encephalitis. At the time I ran a
high lyme fever of 101. LOL Treatment has cleared it up.
-------------------- 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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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I've tested neg for babs every time I've been tested. Dr. thinks I may have Bart even with neg. tests though.
I have Lyme and Mycoplasma. Tested + also for RMSF and West Nile virus.
I can never muster up a temp past 98.8. Only once in a blue moon.
Hubby says it would be useless to go to Urgent Care because what could they do? I want to go to ER but he doesn't think it's necessary. My lips and gums are tingly... but I've had that before and tests said I was okay. I don't really know what to do at this point. I feel a little "weird" or spacy. But nothing really horrible... more annoying than anything.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
I get stuff like that when I herx (at least I think that's what it's from). It's really scary.
I found that if I keep up with my magnesium, the "episodes" are a whole lot less. And now I've started LDN and am finding some relief from some of the neuro stuff.
My doc suspects babs, although the one test I had was negative.
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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posted
I've had what you describe since I was a teenager and often at the computer (BTW I'm now in my 40s). The first time it happened was in a Mall. I had my head turned while I was walking and looking at a shop window. When I turned my head back it felt like the floor was zooming up at me. I thought I was going to fall flat on my face.
For me it feels like it has a lot to do with my neck--possibly the nerves that're irritated by lyme or TBDs. I call this stuff a whoosh.
I try to keep my chin tucked and my neck straight. I feel like if I stick my neck or chin out forward AND if I lock in this position absent mindedly--like when I'm on the computer--the whoosh happens.
I've had many brain MRIs and been to many ENTs about this. Went to vestibular rehab and did the epley maneuver. When i tell most ducks about this they just blink at me. Nothing has helped except the chin tuck thing and trying not to lock or make sudden head moves.
It's scary but if you don't freak out on top of it it goes away pretty fast. Holding on to the table in front of you can help too. Keep the breathing deep and steady. ( I realize my suggestions are ones I developed on my own just to get through ).
I'm curious to hear what you're LLMD says about it. Also I've been to the ER about various vertigo issues and it was useless. They do the standard neuro tests and maybe give you some antivert--which doesn't help me-- and off you go after being there for 6 plus hours.
Hope you find relief.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Wow, I am surprised to hear about an LLMd who si alos a neurologist. I tend to lump all of them in with the ID's in terms of their lyme treatment.
Posts: 207 | From NH | Registered: Jul 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Purple... yeah mine has been treating me for 2 years, and my oldest and hubby for a yr, and my 2 youngest kids just started seeing him.
I love having an ILADS member LLMD who is also a neurologist. Sure helps!
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
And Sickpuppy....I also relate this to being something do to my upper cervical spine, base of my skull area. Weird!
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Cranial-sacral therapy may be helpful. Search the site for UPLEDGER INSTITUTE to find a good DC, DO, PT near you who is trained in this gentle but thorough technique.
There are other methods, too, just be sure you get someone who does GENTLE manipulation, not the Snap & Crack or Twist & Shout kind. NEVER let anyone do sudden twists of your neck.
Some LMTs do Cranial-Sacral tx but be sure they have that extra training and certification in this very specialized technique. Not everyone can do this and not all who do do it well.
Ask questions. If you find the right person, this can be tremendously helpful, especially as lyme often attacks cranial nerves that also correlate with the inner ear (CN VI and VII, esp.)
==========
CURCUMIN also may be of help as an good anti-inflammatory.
posted
Yeah Keebler I LOVE cranial-sacral. I went more for the general body panic and what I call 'weird-head' feeling. It also helps with the malaise and pain/tension.
IckyTicky, I even went for some neck physical rehab which made it much worse one day--like I walked in ok and walked out like a drunk person with the world going bananas / worst vertigo ever. So here here on the gentle and the slow. And no electrical stimulation or needles--they're too much!!! Head loose like a bobble head and neck straight.
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