posted
Sitting in neurologist's office last week for follow up a 4 month follow-up appt. Had been in there with her for maybe 7 minutes or so.......
Suddenly started feeling one of those weird dizzy spells happening. I told her I was having one, but I tried to keep talking.
She asked me if I wanted to lay down and I said no. I tried to shake it off.........even put my head between my legs to get some blood to my head.
I felt a tiny bit better, but then I wasn't able to concentrate and it was harder to talk (find words, etc.) Started getting a little dizzier.
She asked me again - "wouldn't you like to lay down for a couple of minutes?" I said "no, I'm fine."
Then all of a sudden I decided that laying down WAS what I wanted to do! She agreed and told me that I wasn't looking too well.
I tried to slowly stand up and had problems even taking 3-4 steps to get to the table to lay down. She had to help me.
When I laid down, she was checking my pulse and the next thing I know she's calling the ER at the hospital (where her office is located.) She's telling me that she's sending me to the ER right then and there.
I tried to tell her I didn't need to go, but then I really started feeling bad everywhere. My speech was slurred, my throat was getting that "closing up" feeling and it was hard to swallow.
My whole body felt like it was disappearing into the table. My arms and legs felt like lead was running through them, then my chest started hurting badly, especially my left shoulder.......it felt like it was on fire! My left arm was feeling numb, too.
Then I realized I couldn't move my arms or legs. I couldn't really even feel them anymore ---- no muscle control. She told me my arms and legs were very cold.
I was just extremely weak and felt totally helpless. I wanted to cry, but I couldn't.
Anyway, I ended up being put on a stretcher and taken to the ER. I heard my neurologist telling them I might be having a stroke of some sort.
They did a CTA, lots of labs, chest x-ray, and who knows what else. Everything kept coming back "normal" according to the ER doc. He was really frustrated because I could tell how puzzled he was.
I was there for at least 8 hours, finally being discharged because I didn't sound drunk anymore and had more wits about me. My right arm was finally starting to move and my left arm was FORCED to move by the nurse yanking it up.
When I left, I could use my left arm partially; however, my legs still weren't working. They had to pick me up to put me in the wheelchair and let my husband pick me up (literally!)
My legs weren't working until the next day, but I was having to take little baby steps. My feet felt like they had been stung by bees. I was still VERY weak all over and had already been told to rest for the next couple of days.
They still haven't figured out what happened. I'm going for a tilt table test in less than 3 hours, so I better get in the shower.
Any thoughts on what could have caused a sudden drop in my heart rate (while in a sitting position), the dizziness, etc.? My BP has been consistently high (140-something over 90-something)----------
My HR is always in the high 80's to a little over 100. At the time of the "incident" my HR was around 60, according to my neurologist.
Any bright ideas anyone? (Sorry for such a long post, once again.........that should be my signature line!)
Thanks, terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Terri,
Your post is actually very coherent with good inclusion of necessary facts. No apologies needed there.
Have you been in touch with your LLMD? These sort of things are nothing new to most LLMDs.
I'm sorry that this happened to you. I'm not sure I can be much help as while I had 97% of the things you describe happen to me many times over the years, I did not have the chest pain or left arm problems.
I have had the sudden sharp drops in HR and BP - with speed and at levels that I was told were just not possible. Most often, I was sent away with everyone shaking their heads after typical tests were inconclusive.
My inner ear specialist was the only one who helped me understand how that happens - for my case - the inner ear triggers the chain of events. Inner ear dysfunction can cause ataxia - limbs and speech get stuck.
EMTs taught me that during and after such events, my blood sugar can drop like a rock, too, to very dangerous numbers.
Other than the chest pain and left arm problems you had, everything else matches up - no local doctor every figured it out for me, either, and I was dismissed - even kicked out of the ER a couple times. So, I'm glad they at least took you seriously.
Finally, a wise neurotologist help fit together many puzzle pieces. Sadly, he knew enough to tell me to test for lyme but then tried to get me on steroids - a very bad idea with lyme.
I'm sure you know the inner ear could be responsible for most of the symptoms - even the drop in blood pressure and limb weakness. That's a very long explanation and I can't quite express it. This is my first post of the day where I try to wake up and work out cobwebs but I'm feeling too dizzy and nauseated to think in order to explain very well.
So, you see, when the inner ear is messed up, it sends very confusing signals to the brain and they send confusing signals to the rest of the body. Sort of.
However, after many years of passing out, having seizures and what even some P.T.s described as possible strokes, my experiences don't match up exactly to yours so I think there is probably more going on besides possible inner ear / brain mixup.
But the inner ear can mess up all kinds of neurological signals - and especially trips up the autonomic nervous system. It has me sounding drunk, as you described . . . and so many other "unexplainable" wacky things.
Even if they say you have NMH or POTS after the Tilt Table test - you might still seek out an neurotologist as, with autonomic nervous system dysfunction, the inner ear can trigger the chain of events. Maybe your LLMD can suggest a LL neurotologist.
Also to consider is the heat - but I guess they would have checked to see if you had heat stroke or dehydration.
And, I guess you ruled out food poisoning - or being exposed to aspartame or MSG by mistake. Chemical sensitivities also set of some of these events for me. Although you never mentioned being hit by any smells, it's important to keep that in mind.
You should also be assessed for addison's &/or cushing's -- both extremes of adrenal dysfunction that often goes with lyme but requires different treatment as the normally prescribed steroids can be very dangerous for those with lyme. But most endocrinologists don't know enough to work with lyme patients. Your LLMD should be able to help guide you.
I hope TerryK comes along as she know a lot about the kidneys and hormonal regulation that can cause symptoms as you describe.
I hope your LLMD can also help you get out of this maze.
Take really good care of yourself. I wish you good luck today.
posted
I was just going to say low blood sugar!!!! It is like everything stops working!!!
I was getting my tonsils removed and I had to go in to the office for some blood work.
They ran the blood work and the next day my ID Dr who is affiliated to the enterologist called me and said get in the office immediatley...my blood sugar level was 28.
I drove that day to the office by myself...I am lucky I even got there. It is hard to tell the difference in the symptoms between Lyme, Co-infrections and low blood sugar.
They hooked me to a sugar drip and it went up to 90 and when I got there it was 32.
So what casued it we never know. The Endocronologist put me in the hospital for 3 days with no food only fluid to see if I dropped again and it never did. No on really knows why it all happens. Just my opinion!
I have a blood sugar monitor and when I start feeling like that I take it. You really should get one and keep track of it.It has not happened since.
I hope thinks get better!
Posts: 131 | From Georgia | Registered: Oct 2008
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posted
Man, all those symptoms together just doesn't make sense to me.
Could have it been a herx and/or encephalitis?
Your limbs were cold and your heart rate was low. Perhaps it was your hypothalamus causing excess vasopressin, decreasing your heart rate, and causing a feeling of dizziness. Perhaps fear was contributing this subset of symptoms, or your autonomic nervous system just glitched. It didn't sound like you had bradycardia (a good thing), but it sounds like your ANS may have not been controlling your heart too well.
Now your other symptoms (such as can't feeling limbs for days) I won't even try to guess. My best guess is that you had a herx that nailed your CNS in all directions. That could explain why they couldn't figure out what was wrong with you in my opinion. Are you on antibiotics? Did you start anything new?
Most importantly, have you started feeling better yet? If you are feeling better within a week, I think a herx is the most logical thing I can think of.
It's just a weird coincidence that all this would happen during a neuro appointment. Maybe the stress on your body from going to the appointment was a trigger.
I think being evaluated for POTS is a good idea as well. Your blood pressure may be high now from all the stress from your situation, or maybe your body is trying to figure out how to get your blood pressure back in control.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- kday,
If you've not experienced "all those symptoms together" you are very lucky. It's actually not that uncommon for lyme patients.
Most of those symptoms are my every day life. Better now, by many degrees from what it once was - but it all actually makes perfect sense to me. While a herx can explain some things, such symptoms (in my case) usually have nothing to do with a herx. Lyme changes so much about the workings of the body.
You did raise an important question I had not considered: a new medicine. I have had such symptoms get much worse when starting a new med, especially with minocycline (which happens to be ototoxic and messed up my inner ear even more).
More is explained in the article below and, although the title suggests it as a diagnostic tool, it's also a good reminder to all of what daily life can be when lyme (and other chronic stealth infections) changes the terrain:
posted
I understand that Keebler. I've had all those symptoms together during herxes, but not part of my every day life.
Judging from the post, it doesn't seem that this kind of thing has happened to her before, and that's why I think it could be a big herx.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, I see. Since it was the first time, yeah, that's a good point.
I came back to post this - lots of good stuff here but also check for new information at the authors' own websites: --------------------
posted
Having the tilt table test is a very good idea. I was thinking it could be POTS or NMH...common with Lyme patients.
That must have been very frightening! And then to have drs have no clue... don't we all just love that!?
Hope you get some answers today on all this.
PS.. My heart rate is usually around 85-100 and it has been at 64 upon occasion.... without the symptoms you had. So I think you're dealing with something other than a heart episode.
If it turns out to be POTS or NMH, there is information here:
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