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amother
OP
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 Wed, Jul 17 2024, 4:00 pm
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Hi! Anyone who has/had POTS (Postural orthostatic tachycardia syndrome) have any good advice that helps, was anyone given a medication? Any tips for flare ups weeks like during menstruation.
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amother
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Wed, Jul 17 2024, 4:11 pm
It's a kind of dysautonomia, which means dysfunction of the autonomic nervous system. The most important nutrients for autonomic nervous system function is thiamine. Many of us are deficient in this nutrient. Derrick Lonsdale, the thiamine guru, has done a ton of research on the connection between thiamine deficiency and autonomic dysfunction. The best for to take that crosses the blood brain barrier is ttfd. A good brand for this form is objective nutrients, the product is called thiamax. Thiamine needs other b vitamins and magnesium to work, so it should be take along with a good quality methyl b complex and a good form of magnesium such as malate, orotate or taurate.
Another angle with POTS is the adrenal and blood pressure connection. To nourish adrenals plenty of electrolytes are needed, along with whole food vitamin c.
Long covid has been implicated recently in POTS, but any chronic infection can cause it really, via post infectious neuroinflammation. If this is something you suspect, it would be a good idea to treat for this.
Low dose propranolol is a fairly safe medication used for POTS
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amother
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Wed, Jul 17 2024, 4:19 pm
| amother OP wrote: | | Hi! Anyone who has/had POTS (Postural orthostatic tachycardia syndrome) have any good advice that helps, was anyone given a medication? Any tips for flare ups weeks like during menstruation. |
I have POTS, the absolute biggest triggers for me are not getting enough sleep, and being sick. I can’t always control getting sick because my adorable kids are always happily giving me viruses, but I do try very hard to get at least 6-7-8 hours of sleep a night.
For flare ups, make sure you’re drinking a lot and eating a lot of salt. There are salt tablets your doctor can prescribe if necessary.
I never took any medication for it.
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amother
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Wed, Jul 17 2024, 4:20 pm
| amother Aconite wrote: | It's a kind of dysautonomia, which means dysfunction of the autonomic nervous system. The most important nutrients for autonomic nervous system function is thiamine. Many of us are deficient in this nutrient. Derrick Lonsdale, the thiamine guru, has done a ton of research on the connection between thiamine deficiency and autonomic dysfunction. The best for to take that crosses the blood brain barrier is ttfd. A good brand for this form is objective nutrients, the product is called thiamax. Thiamine needs other b vitamins and magnesium to work, so it should be take along with a good quality methyl b complex and a good form of magnesium such as malate, orotate or taurate.
Another angle with POTS is the adrenal and blood pressure connection. To nourish adrenals plenty of electrolytes are needed, along with whole food vitamin c.
Long covid has been implicated recently in POTS, but any chronic infection can cause it really, via post infectious neuroinflammation. If this is something you suspect, it would be a good idea to treat for this.
Low dose propranolol is a fairly safe medication used for POTS |
A small correction, true POTS is not tied to blood pressure rising or dropping.
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amother
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Wed, Jul 17 2024, 4:27 pm
| amother Petunia wrote: | | A small correction, true POTS is not tied to blood pressure rising or dropping. | A drop in heart rate will usually but not always affect blood pressure
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amother
Wandflower
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Wed, Jul 17 2024, 4:28 pm
I was prescribed a beta blocker (corgard) for migraines that may have been triggered by POTS, and it really helped.
Also, drinking Powerade/Gatorade when feeling POTSy
Eating pickles helped me feel better also, due to high sodium content
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amother
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Wed, Jul 17 2024, 4:31 pm
| amother Aconite wrote: | | A drop in heart rate will usually but not always affect blood pressure |
That’s only true when the drop in heart rate is being caused by something other than POTS. When my POTS is flaring my heart rate can jump, for example, from 80 to 190 when I go from sitting to standing, and then fall right back down when I sit down again. With zero change in my blood pressure.
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amother
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Wed, Jul 17 2024, 4:51 pm
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Do you ladies with POTS also have ehrler danlos syndrome?
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amother
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Wed, Jul 17 2024, 4:53 pm
| amother Sage wrote: | | Do you ladies with POTS also have ehrler danlos syndrome? |
I don’t.
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amother
Jetblack
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Wed, Jul 17 2024, 5:03 pm
| amother Sage wrote: | | Do you ladies with POTS also have ehrler danlos syndrome? |
The very common trifecta- POTS, EDS, and MCAS.
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amother
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Wed, Jul 17 2024, 5:05 pm
This trifecta is too overhyped these days and too many hypochondriacs online are convincing themselves that they have all 3 and they’re disabled.
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amother
Lotus
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Wed, Jul 17 2024, 5:47 pm
I have EDS and POTS (no MCAS, though I am undergoing testing for a different mast cell based disorder).
For POTS, keep hydrated. Dehydration is a major trigger for me.
Also, the heat is a major trigger.
I eat a lot of salty food, it helps.
Stand up slowly.
If you feel faint, sit down and put your head between your knees.
I always keep food and water with me, just in case.
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amother
Pink
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Wed, Jul 17 2024, 8:55 pm
| amother Petunia wrote: | | This trifecta is too overhyped these days and too many hypochondriacs online are convincing themselves that they have all 3 and they’re disabled. |
I have POTS, Ehlers Danlos and MCAS and from what I’ve learned from my doctors and own research, the trifecta is valid. Of course not everyone has all 3 diagnoses, but there is a large group of people who do. There is not yet clarity on why that is the case, but medical hypotheses that they could all be one larger disorder (with some people only having some symptoms) or there could be an underlying reason why people have all 3 together.
Hypochondriacs feeling that they have a condition does not invalidate the condition (as hypochondriacs can think they have any condition). Another possibility is that since MCAS, Ehlers Danlos and POTS are all rare conditions and not widely known, the conditions are actually underdiagnosed. Some of it could thus be people veritably recognizing the symptoms and realizing they may have the diagnosis (which I believe should then lead to seeing a doctor to confirm, but might lead to online supposition instead).
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amother
Smokey
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Wed, Jul 17 2024, 9:11 pm
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I have pPOTS - prenatal POTS, meaning only (or mostly) when I'm pregnant. I always thought it was a blood pressure thing but that post about thiamine above looks interesting. I'm going to try to research that.
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givelove
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Wed, Jul 17 2024, 11:01 pm
I do
| amother Sage wrote: | | Do you ladies with POTS also have ehrler danlos syndrome? |
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amother
Tanzanite
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Wed, Jul 17 2024, 11:16 pm
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amother
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Yesterday at 5:32 pm
Made a new post but not getting any answers! Maybe someone will see it here!!
If you have POTS (or have a close family member that does) which dr do you see?
Preferably in Lakewood? Who's your PCP?
Are your issues under control?
My dd was recently diagnosed.
New to this saga and really not managing!
All advice and chizuk welcome!
Is it normal to be in pain daily?
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amother
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Yesterday at 5:40 pm
| amother Lightgray wrote: | Made a new post but not getting any answers! Maybe someone will see it here!!
If you have POTS (or have a close family member that does) which dr do you see?
Preferably in Lakewood? Who's your PCP?
Are your issues under control?
My dd was recently diagnosed.
New to this saga and really not managing!
All advice and chizuk welcome!
Is it normal to be in pain daily? |
Is the pain related to EDS? Pretty sure thats what my dd has.
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amother
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Yesterday at 7:06 pm
| amother Sage wrote: | | Is the pain related to EDS? Pretty sure thats what my dd has. |
I really dk.
What is EDS?
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amother
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Yesterday at 7:08 pm
| amother Sage wrote: | | Is the pain related to EDS? Pretty sure thats what my dd has. |
Just looked it up! No bh doesn't look like her symptoms.
Refua sheleima to your dd!!!
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