LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Hi everyone. Just wondered if anyone else has this...
The past couple weeks Ive gotten this thing a couple times. I will be standing at work talking to a customer. THen their voice starts dimming. Then its like my vision starts going out and I feel like Im going to faint.
But I dont. I just feel really messed up and out of it, the rest of the day. I guess its that derealization feeling. I can hardly focus my eyes, or comprehend what someones saying to me.
Also Ive been getting this feeling lately that Im not standing or even sitting straight up. I have to hold onto the counter at work cuz I always feel like Im slanting. WHat is this? What can cause this. I cant afford my LLMD anymore.
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I would go to a doctor, even if not an LLMD. It could be seizure activity I think. Could be various things probably, but I know that is one thing it could be.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I relate to the "hardly being able to focus my eyes" thing. I hate that symptom. I am always worried my eyes look crossed or glazed over to people talking to me, because I am certainly not seeing them clearly. And it is always accompanied by feeling out of it!
The feeling slanted thing....it's all familiar to me. I would say it's just simply lyme and/or coinfections related. If I had to guess, I would say moreso babesia or bartonella. Is it an "imbalance without true vertigo" thing? I have heard that as a symptom....can't remember if it's a lyme or babesia symptom.
Also, research POTS, and see if that sounds like you. If you search on this website, you may find helpful info. I take the beta blocker Pindolol for it, and I feel it has helped me overall some.
The best advice I can give you though is to receive proper treatment for your tick diseases. Sorry I can't be of more help. I hope others chime in though with advice!
I hope you find a doctor that will help you get proper treatment. Just don't give up! I have a lot of confidence these things go away with treatment, as many people on this website can testify to Posts: 4590 | From Midwest | Registered: Jun 2008
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bettyg
Unregistered
posted
lisa,
it's NOT like you start to sleep like NARCOLEPSY, SP??
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posted
I learned about my Lyme by first going to an ENT due to my various vertigo symptoms.
I used to often feel like the floor or sofa was dropping out from underneath me, and I walked as if I were on a tossing ship. I would sit down or go to bed, and tell myself "the seas are rough tonight" in order to cope with the movement/tilting sensations. Sometimes, when laying down, I even felt as if I had flipped over, sideways or head over heels!
Sometimes I would feel like one leg (while walking) had nothing underneath it, like I had stepped in a hole.
And feeling as if I were about to black-out was very frightening. I never blacked out either, but would get that sensation often.
Hate to tell you this, but these are symptoms that decreased dramatically after 2 years of aggressive treatment with Dr. H.,now being followed by a lower dose ABX protocol with my local GP.
Maybe you could get to an LLMD, get an assessment, start agrressive treatment, then find a local GP willing to keep you on ABX once you have documented your needs by first going to an LLMD.
My symptoms now return in milder form when I am stressed, fatigued, or ill with a cold, stomach bug, flu, or having bad allergies.
ESG
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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posted
LisaS, My 14 yr old daughter (very sick with lyme and co-infections) has this. She says her head feels heavy and she has to lie down.
She's had several different types of episodes, all ending her having to lie down or hold onto something. She ends up being even more fatigued than usual after these episodes and can't comprehend very well.
I think it's seizures and one of her LLMD's agrees as her most recent SPECT scan came back abnormal.
I agree with others on this, you need to see a doctor, if not an LLMD, a regular one to rule out other things.
Take care!
Posts: 56 | From Downingtown, PA | Registered: Jun 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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[Edited to add the P.S. up front: if you feel the need to go to the ER or urgent care - do that. While I advise doctors who are LL, in an emergency, you may need to see any doctor and any doctor may well be able to help you. Not everything is lyme. And, in an emergency, time matters.]
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I am no stranger to the fainting and tilting you describe. Turns out I have lots of inner ear stuff - some from lyme, some not.
These symptoms can be caused by many things, but I hope your (previous) LLMD can direct you to an ENT or an neurotologist who is LL.
Although you no longer see your LLMD, I hope s/he can offer some referrals or suggestions. Maybe a phone consult ?
You might also ask those in your local support group if they've gone to inner ear specialist and who might be the best for those with lyme. I would get a referrral as not all ENTs are at all familiar with lyme. And, while lyme may not be involved, it may be.
It may be caused by lyme/TBD, but it may be something else.
Blood sugar, adrenals, hypotension (orothostatic or NMH), etc. You might ask your doctor about heart considerations regarding blood pressure regulation - and circulation.
The various nervous systems get a little off kilter with lyme and that can be part of this. It can get better.
If you see a neurologist, it's most important to have your LLMD's recommendation. And, if you get an EEG, see if you can get a functional EEG or QEEG. Many EEGs don't pick up everything. The Functional EEG is much better.
And, if you see a neurologist, please just say the symptoms without putting a label on it. You mentioned it's probably "derealization" in your note above. Just the mention of that word could land you in no-man's land and your symptoms may be treated as psychological rather than medical. And, your chart will have that brand for all future doctors. So, don't even go there.
Yes, this all seems unreal. But, with no apologies, describe it as it is whether dizzying, nauseating, whirling or dropping. Describe, as best you can the physical sensations and not how you feel about it if you want the best medical care.
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In case this is low blood sugar related, Be sure you eat small frequent meals, regardless. If you are getting overheated, be sure to have electrolytes and a sea salt.
Adrenal support might be very helpful, too. Ashwagandha really helps me. The adrenals regulate so much and weak adrenals, alone, can trigger syncope (fainting).
Emergen-C is a good powered packet to help. Just mix in a glass of water - and follow with clear water to wash it off your teeth.
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With sincere apologies for way too much stuff, so as not to miss anything, these threads below provide more information. But, it's not all here. Be sure to talk to your doctor.
In the meantime, listen to your body. If you need to sit or lie down - I don't care where - do it. I used to try to push through this and often became one with the sidewalk. Some vestibular/eye exercises might also keep your balance safer.
For instance, if you feel faint, first sit or lie down. But look at a particular point for focus. Feel your feet and pay attention to where you are in space. Breathing is good. And, while this is scary, it happens to lots of people everyday. It can get better.
There might even be a very simple explanation - like: are you around new carpet or fresh paint? A new perfume? (and going scent-free will help take a load off your brain).
A blood test would be in order, for sure. I hope you can find just the right doctor and that this resolves soon.
Take care - really good care of yourself.
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Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I've had this particular thing happen once, and I actually did faint. It was right after church. Kind of embarrassing - in front of a crowd of people.
Hasn't happened since, thank goodness, but I still get lightheaded and dizzy quite often and feel the need to sit down no matter where I am.
Dizziness, wooziness, lightheadedness is a symptom of lyme and most people who have lyme have it quite often.
-------------------- 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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posted
EXCERP from Dr.B (ILADS) Treatment guidelines.
Neurally mediated hypotension (NMH) is not uncommon. Symptoms can include palpitations, lightheadedness and shakiness especially after exertion and prolonged standing, heat intolerance, dizziness, fainting (or near fainting), and an unavoidable need to sit or lie down. It is often confused with hypoglycemia, which it mimics. NMH can result from autonomic neuropathy and endocrine dyscrasias. If NMH is present, treatment can dramatically lessen fatigue, palpitations and wooziness, and increase stamina. NMH is diagnosed by tilt table testing. This test should be done by a cardiologist and include Isuprel challenge. This will demonstrate not only if NMH is present, but also the relative contributions of hypovolemia and sympathetic dysfunction. Immediate supportive therapy is based on blood volume expansion (increased sodium and fluid intake and possibly Florinef plus potassium). If not sufficient, beta blockade may be added based on response to the Isuprel challenge. The long term solution involves restoring proper hormone levels and treating the Lyme to address this and the autonomic dysfunction.
Posts: 789 | From CT, | Registered: Jun 2006
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
If people's voices are dimming when they're talking, it may be seizures and not NMH. I would not make assumptions in this case, but get it checked by a doctor.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Thank you everyone for your responses. I know what I need to see a Dr. I just dont have any money to right now. And being in the small town Im in, all the Drs already know me. Even the nurses.
Its frustrating. I do have a good llmd, just cant afford him right now. But Ill try to get in when I can.
So far any ekg, holter monitor, any test Ive taken shows skipped heart beats and thats it. One Dr said myabe mitral valve prolapse. But I havent taken the tilt test yet. It makes me nervous to have that medicine injected to make my heart beat faster. Ugh! But I guess it may be a neccessary evil, huh?
I just want to go to bed and sleep for a year until they have a cure. Im so tired.
posted
There is a free way to see if you have POTS, though it's not 100% reliable.
Have someone take your blood pressure and pulse lying down. Then stand up and repeat.
If your blood pressure drops and your pulse increases, you probably have POTS.
I have fairly bad POTS and nearly fainted several times before I knew I had a Lyme relapse.
Once, I was at Stanford Medical Center, and I was determined not to pass out in front of several dozen physicians and residents. After standing for 20 minutes, I felt that familiar feeling of the world closing into a tunnel and going gray. My ears felt full (sounds muffled) as well.
I had to go to the bathroom and squat and lean against a wall, holding the handicap bar. (I didn't want to sit on the floor, though that would have been better.)
I finally managed to return from my gray world, but my face was still white as a sheet. Thankfully, the room we were meeting in was dark.
Now, if I feel remotely lightheaded, I just sit or lay down. I often have to do this when going down the stairs in my house, so I just plop down on the stairs for a minute until the blood returns to my head.
I hope you find the answer.
Posts: 168 | From Delaware | Registered: Aug 2005
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posted
InADaze's 'free' test worked for me at home and in doctors offices. When you get up don't take BP right away, first you need to stand very still for several minutes. Then take BP/HR. Sometimes when standing the top number (BP) goes down and the bottom number goes up, I forget if this is NMH or POTS or both.
Posts: 621 | From US | Registered: Jun 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You say tests show skipped heart beats?
You show be evaluated for long QT syndrome, then.
Do startles, well, startle you more than you think they should?
that would be one indication (although that happens with lyme, too).
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
For me this was caused by low cortisol from adrenal fatigue, and completely remedied by Cortef.
You can get a saliva test from a compounding pharmacy to test for this.
A good lyme doctor would be familiar with this treatment, but many run of the mill doctors will not treat adrenal insufficiency with Cortef, unless it is bad enough for an Addison's Disease diagnosis.
Many of us lymies have low cortisol levels that could benefit from treatment.
There is a crossover between hypoadrenia and POTS, but I'm not sure exactly where the differences an similarities are in diagnosis and treatment.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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