posted
My husband and I were going to a nearby lake to sit on the beach. He decided to stop at a local convenience store to grab some NA beer. WWhen he drove us away from the store, I knew he was going a direction, a different way than I would have gone but I thought it would be alright. No big deal at all.
Less than a minute later I looked out the car window and had no idea where I was! I didn't even know if I was in our state or the next. I kept looking out the window trying to understand what I was seeing--just fields and trees, little farms and barns. I wanted to scream STOP the Car! But I held it in, held onto my wits. I wanted to scream I DON'T KNOW WHERE I AM, too, but I didn't, thinking hubby probably knew where we were. I knew I should have known and recognized where we were but couldn't! I think for a bit of this time I couldn't even remember we were going to the lake.
It took maybe a minute or two for me to understand that he had simply gone a different way around the lake. I wasn't born where we live but we've lived in our house for four years. I have been on the road he took at the very least a dozen times, probably more.
It was almost like I'd blacked out and came to momentarily and just lost all conscious thought and memory of what was happening.
Please tell me some of you have had things like this happen to you. Ok? Make something up if you have to cuz it was really frightening.
I have had teeny, tiny events like this since I had Erlichia/Lyme encephalitis but those events were seconds long, never minutes long!
Here's more. Yesterday a post office clerk commented on my wedding ring and asked me what kind of stone was in it. I could not remember the name of the stone in the ring I wear every day and I've worn the ring for eight years. This really scared me. It took me an hour to remember the stone is a Tanzanite.
I could remember, and told the clerk, these stones were smuggled out of Africa at one time. And we talked about the beautiful blue color but I just couldn't remember what it was called. I was embarrassed too. Do you think this is significant memory loss?
On Bactrim and Malarone now. Appreciate comments. Thanks all.
Posts: 422 | From Luck home | Registered: Sep 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
This is not uncommon. Do you have flareups? I would suspect that you are in one when this happens.
I in the past had similar episodes and tried many things to try to mitigate the problem. I had suspected an inflamatory process that decreased the blood flow in the brian and tried steroids... They did not work (for me, they might work for others). If you have babasia, this can also be caused by the protozoa infected cells gumming up the brain micro vasculature resulting in low blood flow. (steroids won't help with this aspect)
In any case the problem was reversible for me. I have learned that if and when it occurs, just go to bed for a while. It is usually improved when I wake up.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
Before I was diagnosed with Lyme,I was on my way to work, stopped at a red light, I did not know where I was or what I was doing. I pulled over, tarted crying and sat there for a while. After about 5 minutes I was able to get control of myself and realized where I was at and where I was going. That was the only time it happened to me that bad. It was 11 years ago.
Today I just got my third picc line and hoping to beat this stuff for good this go round.
Hang in there!!
-------------------- Lisa Hines Posts: 18 | From Orange Park, Florida | Registered: Jan 2007
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posted
What you describe happens to us frequently. My husband more so than I.
He travels to work the same way everyday and tells me that there have been many times that he will get to work and not remember the drive or parts of it.
Also being on the phone and 'waking up' in the middle of a conversation.
He says it seems that being overly tired, under stress make it worse or brings it on more frequently.
He gets headaches alot on days when this is bad.
Ive read other threads on here where people go through these types of things and from what I read, there is improvement with treatment.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Oh, I have had a lot of that!!!! It's gotten much, much better with treatment. I have Lyme and babs.
I would go every week, pick up my hubby from work, then take him to Starbucks. One week, after having to turn around after missed turns going to his office, I told him he'd have to tell me every turn to Starbucks. Nothing looked familiar.
Before treatment started, I went into Kroger and got so disoriented I had to call my hubby. He had to give me simple directions like, "Hold onto the cart so you don't fall, buy what you can, then check out, go straight home." From that point on, I couldn't go to the grocery without taking one of the kids with me.
This is all getting better. I am being treated for lead toxicity, which I think is helping a lot.
I don't think this is uncommon at all, and I am definately getting my mind back.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Cobweb
Unregistered
posted
I actually was relieved when I was diagnosed with Lyme because I thought I was sliding into Alzheimers-seriously.
After my spect scan I started IV Rocephin-somethings have improved. Now I am going to the last frontier(for me) -diet. Total elimination of sugar and flour.
Going where I have never been before-healthy eating!
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
When I first started treatment, I had several episodes of complete spatial disorientation.
I was seeing a client downtown (in a very familiar area) one morning and when I started to leave, I couldn't begin to figure out which way to go.
I had to call my SO, who served as my own personal onstar getting me out of the city.
In addition, I had quite a few moments of black-outs and, in one, got into a very minor fender bender before I even realized it.
The good news is that those symptoms only lasted about 3 months. And they haven't recurred, thankfully.
It is scary, but I hope this offers yo some hope.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Yes, I went through years of this before diagnosis and treatment.
I thought it was from sleep deprivation, because I couldn't sleep due to the pain. Turns out that both were lyme symptoms.
I developed a bit of a panic disorder, because I was afraid that if I got into a grocery store I would forget why I was there, and wouldn't be able to get back home. It happened many times.
I have driven around town for hours trying to get somewhere that I have been several times before.
I used to enjoy discussing politics, but it got a bit difficult when I couldn't remember the name of the guy who is the, you know, the guy who, you know, got elected, and the names of those other guys he works with.
I don't have this problem anymore. Once in a while I still have trouble with finding words, and I just announce casually that my "word search" is turned off. I don't get lost anymore.
Low dose steroids (cortef) do help me, because my body wasn't producing them naturally in adequate amounts. Anti-inflammatories of various kinds also help.
But mostly lyme treatment and killing the buggers is making the difference.
You'll get your mind back, you can count on it.
-------------------- 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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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Before being diagnosed with lyme, I use to forget my phone number, social security #, and one time I even forgot to shut my car off in the closed garage. Luckily my father was able to shut it down before we all got sick.
The good news is that it does get better with abx treatment, so hang in there.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
Thank you all so much! I really do feel better after reading what you've been through, especially since hubby yelled at me the other day.
Why'd he yell? I'd turned the knob on the gas burner far enough to hear the electronic ignition click but I must have lost concentration and didn't notice the burner didn't light. Gas was pouring out. And I didn't smell it!
Hubby did smell it but not a lot. He thought it was weird because gas is usually so stinky. It was propane because we live out in the country.
A good reminder for me and all of you to be a lot more careful with some things.
Thanks again.
Posts: 422 | From Luck home | Registered: Sep 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Just want to mention that there is a possibility that some of these symtpoms can be exacerbated due to low blood sugar. Hypoglycemia is not uncommon in lyme disease and it can cause massive confusion, not knowing where you are when it is somewhere that you are familiar with, inability to concentrate etc..
My brother was driving home from work one day and even though he had driven the same route for several years he did not know where he was. It was blood sugar.
Although I'm sure this is not the problem for some of us, it is worth considering since many people get great improvement with a low carb/no sugar diet.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by mjo: Gas was pouring out. And I didn't smell it!
Hubby did smell it but not a lot. He thought it was weird because gas is usually so stinky. It was propane because we live out in the country.
It may not have smelled much to you because propane "pours" like water, but gas rises.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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tailz
Unregistered
posted
I blamed my blackouts on stress until I showed up last summer at my GI's office when I, in fact, had scheduled with my PCP.
I remember driving down the highway trying to concentrate on two things simultaneously - the name of the doctor (I had so many!) and where this doctor's office was located. Somehow I got them mixed up.
Even more local driving gets me confused. Sometimes I can't seem to visualize a map of this area in my head to figure out the shortest distance from point A to point B. I get there eventually, but I waste a lot of time.
So it's not you! By the way, I test positive for Lyme and 'equivocal' for malaria. As my sister says, how can a malaria be equivocal? It either is or isn't.
I forget who mentioned blood flow to the brain, but last night I was feeling 'distant' from the pain, laid flat on the floor and threw my knees over the top of my head.
I felt so much head pressure, my ears were swooshing like crazy, but the pain finally subsided and I could sleep a couple of hours.
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posted
Tailz. I will try this! Have you ever wondered if hanging upside down in those boots would help? Didn't someone post on this not too long ago?
Terry, thanks for making me think about hypoglycemia. I do have this and have suffered with it a long time. It has been much better on treatment, so much so, that I forgot to be careful with diet and had a bad attack to remind me it's not gone.
Six! You're right about the gas. That's why I didn't smell it! It was sinking to the floor and I was standing up.
Tailz. I have this too--knowing where you want to go and not being able to go there. Like you, I try to make a map in my head or tap into that directional orientation that should be there but it's lost. It's really frustating to me because I know that I know the area and have been there before, but I just can't put it together. Point A to Point B with nothing in between.
I get there, too, eventually but it's almost more by unconscious reasoning than my active mind working correctly.
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