canbravelyme
Frequent Contributor (1K+ posts)
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posted
Hi guys,
Here's the scenario:
I worked yesterday afternoon (my work involves medium physical activity).
I was feeling pretty well fine when I left. I drove home. By the time I drove home 50min later, I could tell there was something wrong: my muscles were weak.
I managed to get upstairs, and lay down on a church pew. After about an hour, I could tell there was something even more wrong; I could barely get up.
Then, I threw up twice.
I barely remember the rest, but I managed to get into bed, where I "passed out".
I "passed out" two times in bed; each time holding a glass of coconut water on top of a pillow -- I was so still, I didn't spill the glass either time.
Dr. H. thinks the money is on POTS, but I have not as yet had access to a tilt table test. What the H*ll is this??
I can tell you that when it happens, I have the sense that it's much more serious than it's being taken for.
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Keebler
Honored Contributor (25K+ posts)
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posted
- "threw up twice" . . . "muscles were weak" . . . "could barely get up"
- I'd would first consider Heat Stroke (if heat was involved, of course) or Food Poisoning. This does not sound like a seizure. Low blood pressure can be involved but I don't think it's the trigger of this particular event.
"Passing out" can have many causes. IF you were vomiting and did not get nutrients for dinner &/or blood glucose fell too low, that can cause passing out. So can heat stroke or food poisoning.
And so can POTS / NMH but, still, that sounds like only part of the picture, not the main event, this time.
That "Dr. H thinks the money is on POTS . . . "
Assuming this is part of previous conversations as it's unlikely you spoke to him on a Friday evening . . . POTS may have little to do with what happened yesterday. If you have POTS, as those with lyme often do (&/or NMH) that could intensify other issues, of course.
I would first consider everything you have eaten in the past two weeks. It can take that long for some kinds of food poisoning to emerge. Go to Urgent Care this weekend if you get any worse. Hope you feel better, though. -
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Keebler
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Topic: FOOD POISONING ? Links -
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canbravelyme
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posted
Yea, no, it's the same old thing that's been going on for ten years that has improved in terms of severity and frequency, but despite the improvements REFUSES to quit.
These "events" have previously been diagnosed as both seizures and migraines. Now potentially POTS. I don't know what they are, but I think they're serious.
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canbravelyme
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posted
And I'm thinking of trying Gotu Kola -- any thoughts on that, Keeb?
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Keebler
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posted
- Yeah, Gotu Kola a nice helper, a good balancer with good nutrients - but I would seriously review all things you have ingested for the past two weeks -
or any fumes possibly breathed in on your way home as that seems to have been the "magic tunnel" to trigger this. Did you pass any roads being resurfaced with petroleum products? And lawn crews with chemicals - or painting products?
"Vomiting twice" out of the blue seems a different puzzle piece and the first thing to consider is food / drink.
I don't mean to be so blunt or seemingly dismissive but all the other on-going symptoms are just part of having lyme. The variables can be many so it's really best if your LLMD can figure out bit by bit what's going on.
In the meantime, there are many links here about POTS / NMH (similar) -- and the links for seizures also have suggestions for what can help until you discuss the ongoing symptoms again with your doctor.
MAGNESIUM is always good, of course. And GOTU KOLA can be a nice stabilizer of sorts. -
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Keebler
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posted
- POTS information here (though SEA SALT and water would be a good helper there):
Yesterday's event does not sound like a seizure (the vomiting being the main issue there). However, since you asked about that and it may be part of what is going on regularly:
Topic: Best way to control limbic seizures / overactivity?
Many LINKS - support -
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canbravelyme
Frequent Contributor (1K+ posts)
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posted
Nope, this was business as usual, I'm afraid. I got off relatively easy -- usually vomit three times.
I just hadn't experienced the passing out in a while -- used to happen each time. Its unnerving.
Dr. H. thinks the vomiting is gastroparesis caused by the POTS, if I understood him correctly.
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Keebler
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posted
- Oh, did not know that vomiting is part of your usual routine. The explanation of Dr. H. sounds very logical but it seems the right supports have not yet been found ?
Still, review the foods you've consumed and beverages for the past two weeks. Food poisoning should always still be considered - and it can be chronic, too.
I'm assuming you have all this detail, then, but if not - some excellent information here:
Topic: Treatment / Support for Gastroparesis -
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canbravelyme
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posted
Thanks for the links, Keeb. I'm reviewing them.
Sobering to read Bea's posts about Steve.
XO
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canbravelyme
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posted
Didn't read the question u asked about supports - Dr. H. wants for me to get a tilt table test b4 taking the floninef. Tough getting one in Canada, but hopeful bc I found someone online who allegedly will do them.
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Keebler
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posted
- Has Sea Salt helped with the POTS? I'd sure try that first. And Adrenal support as it's directly related. And, regular meals and snacks.
Never miss a healthy snack mid-morning and mid-afternoon (and maybe a bit in evening if an early dinner - something light like a lightly salted cucumber is good at that time).
They are vital to keep us steady on our feet.
Hope you feel better this weekend. -
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canbravelyme
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posted
Thanks, Keeb -- so u think this sounds like POTS?
Salt helps; alka seltzer gold helps more than anything else. I'm a bit apprehensive about taking both.
Dr. H. prescribed an adrenal support, but it made me feel worse, so we agreed for me to stop. It didnt contain cordyceps; cordyceps helped considerably at the beginning of this, so im considering trying that again. After the gotu kola.
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Keebler
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- If one adrenal support does not work, there are at least a dozen others that should. NOT taking adrenal support is NOT an option. It's absolutely essential for anyone with POTS.
My guess is that you may have had a supplement that contained animal "glandulars" and some of us just can take those but need to stick with plant based supplements.
If needed, Rx Florinef for POTS / NMH (or Rx Cortef for adrenals) can be an option but, first, try the usual plant based methods, self-care techniques - and sea salt.
Cordyceps is a wonderful start. As that helped in the past, I'd get back on that. You say Gotu Kola helped, then that, too. Others in the links set.
Sea Salt would have to be regular. A little bit first thing in the morning, etc. (See Wilson)
Yes, it can be POTS, many with lyme have that. You can read about it and see if your daily symptoms fit.
Get Wilson's Adrenal Fatigue book, in that adrenal support set above. It's "required" reading, it's that's helpful. It can save lives, really. Libraries in the U.S. have it and you can get it through inter-library loan if cost is a roadblock, Canada might, too.
In the meantime, see his website. It's gold in your hands, really. It should help a great deal. -
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lax mom
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posted
I have POTS too. I can be sweaty and just overall feeling sick, but as soon as I lie down, I feel much better.
BTW, my Cardiologist did a lying and standing norepinephrine level which showed my norepinephrine tripled just from standing. This test is an option if you can't get a TTT.
canbravelyme
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posted
Thanks, Keeb -- I'm going to look into Wilson's book and thanks, Lax:
You'd mentioned the test before -- I asked Dr. H. by e-mail whether he'd accept that as diagnostic, and he said no. If I can't get anywhere in Canada, I'll ask you for the name of your Cardiologist and have him assess me.
I'm 8min into that video -- yea, so far, I've got POTS.
Though, I'm convinced though I want to lie down when I start feeling unwell, that that lying down actually accelerates the vomiting / diarrhea / dizziness episodes. Shouldn't the lying down / putting one's feet up stop the damn thing??
LAX: What is Dr. H. giving you for the POTS? I am taking a licorice supplement he gave me.
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canbravelyme
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13min in -- yea, Dr. H. is right: I've got POTS
The good news is that the doc I found that I'm hoping to get an appt with is listed on the dinet.org site that LAX linked to.
I'm taking break and going out. Going to get some cordyceps
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lax mom
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posted
I'm on Toprol XL for the racing heart and my Neurologist RX'd Florinef and Potassium.
I have a hard time with the Florinef for some reason. I tried giving it another chance this week at 1/4 the dose, but still got very jittery.
I read somewhere that licorice does the same thing as Florinef.
That movie is great to show family members so they will understand what you are going through.
Rumigirl
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Member # 15091
posted
In addition to POTS, you may have migraines without the headache. Yes, that is possible. I may be wrong, it may be just POTS, but as someone who has both, I have extensive experience with both!
When you get a migraine (whether or not you get the headache), there is vomiting (often, not always), gastroparesis, often passing out, etc. So it sounds to me like a combo of both. Lovely, huh? NOT!
I would check out both. Those of us with TBD's are particularly prone to migraines, as we are prone to POTS as well.
Maybe deal with the POTS first and see what happens from there. But I wouldn't forget about the migraine connection, particularly if treating POTS isn't sufficient. Getting the meds right for POTS can take time as it is.
I couldn't begin to function without Florinef and atenolol for the heart racing to increase the BP.
Your adrenals should be tested, too, and Cortef rx'd if needed. H does do the testing and often the rx, too (although he's conservative on the rx).
Fun, huh? NOT!
When I have a migraine, many things can help, including extra Cortef, and caffeine. You may not need the caffeine; for me that is for the blood vessel expansion that causes the severe head pain aspect. But the Cortef helps a lot. There are migraine meds, too.
One step at a time, of course. Sigh.
BTW, for me, licorice wasn't anywhere near enough to help. Everyone is different. My case is pretty bad with the POTS and migraines.
I never had the tilt table test, as it was absolutely clear to my LLPA at the time that I had it, and he rx'd without it. But H sounds like he wants the test.
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canbravelyme
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Hi Rumi,
Thanks for weighing in. I suspect you're right and there is more than one thing contributing to my personal physical disaster; migraine may indeed be playing a role.
Does what I'm describing sound all-too-familiar?
The traditional migraine meds that I've tried don't seem to help. What does seem to help, consistently, is Tylenol.
Yea, the licorice doesn't seem to be touching it.
My adrenals were tested -- not sure whether Dr. H. has addressed this. I will ask next week when I speak with him.
Got the cordyceps. Going to take one
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canbravelyme
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posted
Speaking of such things, any thoughts about treating with carbidopa?
"Hyperdopaminergic crises in familial dysautonomia: a randomized trial of carbidopa."
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Keebler
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posted
- I know the quest for relief is really important. However,
The concern with tylenol is that it can block glutathione from all cells in the body, is very hard on the liver & lungs, hearing, even at one dose.
A recent Dr. Oz program featured a team of ear specialists who said no one should take more than ONE dose of acetaminophen per week (yes, one dose per WEEK), as it can lead to hearing loss and other issues.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
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canbravelyme
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Yea, I know the stuff is evil, and I've tried other things -- white willow bark; even medical marijuana -- there are only two things in ten years that I've found that give me symptomatic relief: a) Tylenol b) alka seltzer gold. If I take enough AS gold, I find I can reduce my tylenol intake.
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lax mom
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posted
My Neurologist is on that dinet list too. He did a Tilt table, EEG, EMG/NCS, tested 24 hr urine sodium, 24 hr urine catecholemines (dopamine, norepinephrine, epinephrine).
So, hopefully, since the Dr you found is on that list, he/she will cast a wide net also.
canbravelyme
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posted
One would think every neuro would be versed in dysautonomia — how bizarre so many are not.
Thx LAX: I've copied and pasted, and will ask for any tests that aren't offered.
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Rumigirl
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Usually it's cardiologist who do the test---not all cardio's, I'm sure.
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