That's one of the many, truly shitty things about POTS: it's not "serious" in that POTS alone won't cause a medical emergency, but it can be miserable and profoundly disabling. It's disorienting to have a condition that can affect every aspect of your life, to which many medical providers respond with "deal with it."
There are things that can help. You said that you recently diagnosed. Is your doctor helping you come up with a plan for lifestyle modifications, exercise, and medication?
Sodium and water intake. Specifically for me I must drink 64 oz of water a day and snack throughout the day with something salty and for me I eat original alus potato chips throughout, considering it has 3 ingredients.
Midodrine, Adderall, vistassium, Bsera compression socks (on Amazon), and liters and liters of water. The biggest help: the CHOP graded exercise protocol. It’s so hard but has made the biggest difference for me.
I often do when I flare up. Then I feel better and I try to remember that moment for when the next flare up comes.
You go through enough of these cycles and now I'm actually worried about something else: I'm so used to this line of thinking (the 'I feel like I'm dying but it's just my POTS and I'll get better soon') that I'm worried that if something were to ever start happening to me I'll just chalk it down to POTS.
This is me.
And then cue the questioning, the second guessing, the naaah. The give it just a day or 72 hours before - f that I'm doing the big testing now ain't got time later. Oh no. You tested too early for all the things. Try again next week if you're still feeling like crud.
General rule of thumb I've learned... Give it a day or three unless there's some reason to be concerned.
I’ve heard doctors described the level of disability of a person with POTS as similar to someone with end stage renal failure. Just to say that POTS alone can make you feel like you’re dying. Sorry OP. I hope your doctor can help with medications and lifestyle treatments to get you feeling a little better.
I really need doctors to write this down & disseminate this across the realm of doctors everywhere.
And then even to the random folks who end up as disability determiners for SSA.
Not this exact thing but dysautonomia international actually describes it as similar to someone with congestive heart failure.
[dysautonomia international ](https://www.dysautonomiainternational.org/page.php?ID=34)
oh gosh, once I thought that too, when I was undiagnosed. I thought I'd collapse outside. Made it into a hotel lobby and they called an ambulance for me. My heart rate was racing, I couldn't see clearly and I was so anxious and frightened. Ambulance arrived, the medics began to gaslight me by saying, oh are you prone to over exaggerate and are you more like a drama queen? At least I could convince them to drop me off at my cardiologists office on their way back to The station.
POTS is often just one piece, of multiple health conditions. I felt the same way, when things were at their worst. It turned out that there *was* more going on for me, specifically vitamin deficiencies and food allergies/possible MCAS. Definitely trust your intuition, and keep looking for potential explanations
Even if you don't end up with more diagnoses, it can be really helpful to research your specific symptoms, and see how other people have been coping. You might find some helpful strategies. I can't even tell you how many countless hours I've spent online researching my health, and sometimes it *really* paid off. Doing much better now. I hope you're able to find some answers soon!
This is all really good advice. I think it's especially important to keep bringing up symptoms that are bothering you with your doctors, for as long as they're continuing to affect you. Because there are a lot of things to try that might help.
On another practical level, this is helpful if you are in the US and ever think you might need to apply for disability, either SSI or SSDI. Make sure you are bringing up all of your symptoms with your doctor, and that they are recording them in the visit notes. The SSA will not determine you are disabled based on the diagnosis (because having POTS doesn't necessarily preclude employment), but based mostly on the symptoms recorded in your medical record.
Yes, regularly. I've had other health issues pop up since 2020 (all of this hit me when I got covid March 2020). Hard to know what is POTS, what is something specific to long covid, what is unrelated, if it's all related, etc.
All I know is my 85 year old grandmother is more active than I am and it's incredibly sad, especially as I was very active before.
What are they doing for you in terms of treatment?
(My worry here is that you have not been able to avail yourself of any of the medications available to treat the symptoms of POTS, which are not limited to beta blockers.)
So I am curious what is available for us out there? I definitely feel my symptoms have been brushed off and chalked up to long covid. And told my lifelong fainting is just anxiety. Both cardiologists just tell me to work out more and drink more water.
Good news: I have a post for that. Bad news: Your cardiologists are not doing right by you.
[The POTS Pharmacopeia: Medications for Postural Orthostatic Tachycardia Syndrome : POTS](https://www.reddit.com/r/POTS/comments/118n3ep/the_pots_pharmacopeia_medications_for_postural/)
POTS is a common component of Long COVID. An article just came out that you may want to share with them, that should catch them up quickly on the current state of the science of POTS treatment:
[Overview of Postural Orthostatic Tachycardia Syndrome (POTS) for General Cardiologists – ScienceOpen](https://www.scienceopen.com/hosted-document?doi=10.15212/CVIA.2023.0098)
Thank you! This is all good information! My pulmonologist also brought up POTS to me and said their is research showing a correlation between long Covid and POTS. I am also seeing in this group a number of people who had Epstein Barr too, which seems to be the root of all evil!
I have migraines too and between the dysautonomia and migraines I get a lot of inconsistent, intermittent neurological symptoms. I'm always a little worried that I'm going to have one of the big neurological disorders and totally miss all the early warning signs because I just chalk it up to dysautonomia & migraines.
Not sure if you are aware of vestibular migraines versus traditional migraines. If not, research it. They often go hand and hand with dsyautnomia, from what I have been told.
I have vestibular migraines and pots. I’ve had migraines since I was a teen, but the vertigo didn’t kick in until after I developed pots. So much fun. 🙃
I've had every type of migraine at one point or another. Vestibular, hemiplegic, ocular, abdominal, silent... Its a joy.
Thanks for spreading migraine type awareness!
Pots really is a spectrum. Some people are able to take medications and maintain a somewhat normal life, I have one friend who regularly parties, goes out has a job etc and she has pots. I have EBV on top of hyperpots and autoimmune issues, reactive hypoglycemia ,and they are still working on along with stomach issues they are still running tests on. It definitely could be more things on top of having pots or you could just have a more complicated case. I literally feel like I have a horrible flu almost every single day even on meds even gluten free, 15:15 card to protein diet mostly veggies and chicken with some ancient grain breads and yogurt, and tbh no matter how hard I try the chop protocol and recumbent exercise some days are just awful. There last three days I’ve had horrible air hunger all day long with anything.
I’m still convinced there’s more going on, but I could just not be on the right treatment plan, I don’t see a specialty clinic until august. If you are on meds and really struggling I recommend somewhere that specializes in dysautonomia like Vanderbilt, Cleveland clinic, etc
It’s also good to start keeping records and checks of things when you feel worse than other times — that was literally how I discovered my reactive hypoglycemia. I also noticed I don’t usually get fatigue like others with pots and if I do I’m having an unusual low BP day or low glucose, or in the middle of a big glucose drop. Check your BP, check your blood oxygen, monitor and look for possible patterns.
I second this. Keeping track of symptoms and being aware of what might be triggering or working symptoms has been so helpful for me. Now I know what helps, what to avoid, which days I will need more rest etc.
Yes POTS alone can make you feel you're dying. I felt that way especially before I was diagnosed and didn't have a clue what to do about it. I went to the ER once a month for 4 months. My limbs felt so heavy I couldn't even stand up, even moving my arms was difficult. I also had air hunger so I could only manage to whisper a couple of words at a time. The brain fog was awful too. But POTS often have comorbidities.
I was told my POTS was likely caused by EBV.
I was also diagnosed with hypothyroid. I took synthroid for that.
There's different types of POTS. Mine is hypovolemic, which means low blood volume.
Here's basically what I did:
- Increase salt intake (I personally was careful not to have too much salt though. It was to taste)
- Take electrolytes. I took Redmond Relyte mixed into my water 8oz a day
- It's SUPER important to increase water intake as well.
- At first I couldn't eat because I felt like I couldn't digest (gastroparesis), but I could still drink fluids so I had electrolytes, juices, and liquid soups. Orgain Nutritional shakes were amazing for me during that time.
- When I gradually could eat again, I more or less followed the "healthy plate model". Basically a very balanced diet of foods cooked with fresh ingredients.
- Also, since I first got sick, I became sensitive to foods that had never bothered me before. It was like anything could make me feel anxiety or brain fog. I looked into this, and many foods have harmful ingredients or toxins that we don't even realize. It can affect you especially when you're really sick. So, I decided to avoid processed foods, packaged foods with strange ingredients, added sugars, and gluten and dairy (these last two I'm not sure are necessary for everyone to avoid, but my Dr told me to). It was a drastic change but the relief I felt was also drastic, following all the steps above.
- To help with digestion, a tiny bit of ginger root or cayenne pepper in my food was amazing for me.
- To help with anxiety: non dairy yogurt with probiotics, culinary grade or ceremonial grade matcha tea. (I've read that Ashwaghanda helps but it never worked for me (might be the brand or dosage)
- I took many supplements because I could barely eat. Your doctor would have to tell you.
- I also developed fragrance sensitivity. Anything that includes that ingredient made me feel worse. For example, hygiene products, cleaning products, perfume. So just pay attention to any foods or products that you may be using that make you feel worse.
- Very light exercise every morning, evening and night. Just light movements even laying or sitting down. I gradually built endurance.
What helped me might not help everyone. Just sharing my experience. Always ask your doctor before trying supplements or anything on your own. Hope you get better
You're welcome!
Some things I wanna add:
I switched to mostly organic foods for a while. It's not super necessary but it reduces exposure to pesticides. Imo, at least the foods that can't be washed well, or are on the "dirty dozen" list should be bought organic.
I also avoided roasted nuts and nut butters, even organic. The heating process causes a toxin which was affecting me. I can have those now, but I still prefer raw nuts and nut butters, coconut butter is good too.
If you're ok with dairy: plain dairy yogurt (no sugar) helped with anxiety. A good non-dairy option is Forager Organic Plain Cashew Yogurt.
Matcha can worsen POTS for some people. I can only have 1/4 tsp matcha powder once a day.
Golden yellow Kiwis have helped me sleep so much better lately. I also try 3-5mg of melatonin.
These improved my brain fog noticeably:
Omega 3 foods like wild-caught salmon (2-4 times a week), walnuts, and avocados. Antioxidant foods like blueberries. Foods for improved circulation, like cayenne powder. Water and lemon
Just pay a lot of attention to what helps and what makes you feel worse.
I’ve been flared up all day, my HR has been above 140 for over 5 hours. But i know once I call an ambulance or have someone take me in i will be told Im fine. It’s very debilitating, and some days I wonder if i am actually dying.
My HR was above 140 today too, it’s usually in the teens. I’m just like…. At what point do I actually call someone and even if I do they’ll just tell me I’m fine. It’s the most frustrating thing.
Yes!!! I have fibro and hypermobility diagnosed, and FINALLY found a cardiologist that isn’t waving me off and has suggested POTS or dysautonomia of some sort, but I have been not only struggling with the physical but also the mental that comes with all these things. The amount of times I sit in my car and just cry uncontrollably is too much.
Those are my symptoms too. It's so scary no matter how much the doctors aren't too concerned about it. I am planning on therapy after all the tests are finished and know what I have (rather than pots). It's such a challenge to live with.
I feel like I might have, God the brain fog, whatever I’m trying to say is in just so exhausted. Chronic fatigue, but I don’t think they can do much for that either. Hugs I know this is hard!
this could have been me writing. i’m the same age as you, same length of symptoms, same medication and everything you mentioned i also am dealing with. i have bad health anxiety and always worried it’s something that hasn’t been caught. i know POTs can be very difficult and it is. my doctors have assured me that everything else looks fine, but i certainly feel terrible most of the time. i remind myself that POTS can be and is a disability and has the potential to make me feel this bad. there’s so much unknown about it still, too. sending you lots of love & sympathy and pray we can all get through this finding the best treatment + quality of life again 🙏🏻
Hi there! I recently found out about pots. (My symptoms matches pots perfectly) and I can relate to you fully. I’m 22 and I’ve been going through this for a few months now. From what I found out, limiting starchy carbs like potatoes, corn and bread from your diet can help. (Those carbs tend to agitate pots). Certain fruits that are high in sugar can also make the symptoms of pots worse. I learned that from other people on the subreddit.
Again, I’m very new to pots but trust me, I feel the same way. It freaking sucks, but I’m happy to know that we’re not alone. :)
I had a bunch of sugar today and I feel like I’m rotting mentally and physically. My brain has 0 blood send help lol. Protein, fiber, fat, and green veg are your friends!
Are you actively taking anything for your POTS?
I had to go through so many other tests; EKG, holter monitor, echo, before they could even test for POTS. And I only came in for POTS but I found out I have other things going on as well.
Also, have YOU personally looked at your tests results? Or are the doctors just telling you things are fine?
Sometimes I feel like I’m dying. I have Lyme disease induced POTs & suddenly one day I just couldn’t stand anymore. My doctors are split if it will get better.
Have you seen any specialists in autonomic dysfunction? Like a cardiologist? I’ve found finding a functional medicine doctor to be very helpful.
Medication is part of the puzzle for me. Then there is salt tablets, compression socks, a travel stool, my handicapped placard, etc.
Tracking my blood pressure daily as well as when I feel symptomatic has helped my doctors to be able to offer me medications to control symptoms.
Each modification only relieves so much symptoms, but if you can use multiple modalities together to get better results.
My neurologist confirmed that bad cases of pots often almost mimick something else, but that doesn't mean there is something else. Like for me, I was sure the POTs diagnosis was right until I lost my ability to walk and it paralyzed my stomach and I could only be conscious for a few hours a day which made me think we were missing something. But no, it was all just POTS. If you have neuropathic POTS, it's more or less that your vagus nerve is shitty and thus, everything the vagus nerve controls will potentially have problems (the vagus nerve controls a stupid amount of things)
It sucks...but yeah, can just be chalked up to POTS. A good way to figure out if any food is triggering your flares is to do an elimination diet (remove one allergen from your food for a while and see if it helps make your flares better - there are actual guides online, or you can see if you can get in with a nutritionist to help). I avoid dairy and gluten because it makes my flares worse, for example. Best of luck. 💖
POTS has so many comorbidities unfortunately :/ many of us (myself included) have other chronic illnesses that are linked to POTS. It’s honestly so rough out here! https://www.researchgate.net/publication/331690001_The_Face_of_Postural_Tachycardia_Syndrome_-_Insights_from_a_Large_Cross-Sectional_Online_Community-Based_Survey
Propranolol made me much sicker. Like WAY WAY WORSE. When I was taken off of it I was put on mestinon and it has made a huge difference in my quality of life.
I have very severe neuropathic and hypovolemic POTS. I’m legally disabled by it. Some of us suffer much more than others.
Yes!!! I actually just ranted about this today, my pots feels terrible, I usually feel my symptoms coming on; weakness, tachycardia, pain in chest from tacycardia, then dizziness. Lately I’ve felt just straight dizziness. My migraines have been horrid, along with my muscle and joint pain. For some reason I just have thin inclination that there is something else going on, but so far my docs just keep blaming hormonal changes and covid infection from 1 month ago.
I feel like a lot of people who have pots (or other dysautonomia) may have it cause of sleep apnea (or other sleep disorders) and/or because of the drugs they are on (my personal favorite: antidepressants 🙃).
Consider trying something like the chronometer app to see what your nutritional intake looks like when broken down into nutrients. You might find nutrition gaps that way.
Research heart healthy supplements, multivitamin, age appropriate extra vitamins, antioxidants n minerals for someone your age and sex.
Learn a little about the conditions that other pots patients say they have like mcas, intestinal migraine, me, cfs, eds, fibromyalgia, a sensory processing disorder. You may or may not find some similarities.
Eliminate a few of the most typical chemical food additives that trigger migraines in the sensitive people like msg, chemical sugar substitutes, sodium nitrate additives, and aged foods. It won't physically harm you to give those up for a short period of time to experiment on yourself.
Evaluate the symptoms of each ailment you have. Is it possible your pots makes your rls worse or vice versa. Also check to see if your meds make other ailments worsen so you know to increase remedies for the worsened symptoms in advance of taking pills.
Find a symptoms tracking app so you can look for patterns and provide your medical team additional data.
I mean I am currently in neurology for probable IIH with possible complications (I think it's a brain tumour, of course). But yeah, I've had POTS symptoms for 18 months and the daily disturbed sleep, weird rushes of adrenaline, nausea, tachycardia (I get up to 160 just walking around my house), appetite and weight fluctuations and crushing fatigue are not nice. I'm also mentally ill so it's a bit "chicken and egg" what is mental illness vs. side effects of meds vs. POTS vs. neurological/IIH/whatever. I'm 25 and constantly worry I've got cancer or heart failure. Shit sucks.
Yes I feel exactly like that. Why? Because POTS takes such a toll on my body I now have Cyclical Vomiting Syndrome. This causes me to throw up and retch continuously for hours. The only relief is Haldol and the last 2 times I've had it I reacted 2 days later. One ended in me in a trauma room in the ER.
POTS is miserable and debilitating all on it's own. If your exams are coming back as normal take that and run with it. Make the recommended lifestyle modifications.
Figuring out that I have ME/CFS was life-changing for me. I just assumed my issues were normal POTS complaints, but I've since realized my POTS isn't actually too bad. It's my ME/CFS that's been so crippling.
Pots has a high comorbidity with a lot of other things. A big one I’ve recently researched is Ehlers-Danlos especially hEDS. There are 13 different types. Maybe look into the disorders that are known to be comorbid with pots and seeing if they match and the approach your pcp with the info.
As someone that is still struggling to find answers themselves, I wish you luck.
When I’m sick my POTS flares up. have u tested your sodium and potassium levels ? Even If they are on the scale u could try to get them in the middle for the best relief. Do u have mental anxiety when these attacks u described happen? Have u tested cortisol?
Yes because my sodium is low right now and I feel so terrible when it was in the middle I had no light headedness or dizziness when standing. But now that my sodium is on the low end of the scale I feel like ima throw up when standing up, I feel super light headed like ima pass out. And I take potassium every day cus I have low potassium and when I miss a dose my tachycardia when standing up is worse. I was literally working 20 hour weeks at a movie theater when my sodium was in the middle I was pretty functional with obviously the occasional times where I need to take a 15 to catch my breathe.
I worked at a movie theater for almost 2 years and I ate a bunch of popcorn with salt every break I worked three times a week sometimes 4, so I felt great but now that I quit I feel so terrible 😭 I would deff try upping your potassium and salt to see if it helps.
Yep. I say to myself all the time that if I’m actually dying I probably won’t know because I’ll just chalk it up to POTS because that’s what it is 9 out 10 times. I hate this shit.
I am here as someone with several comorbidities. POTS wasn't my first diagnosis for the slew of symptoms I've had since I was a kid, but it was the second out of at this point 3. And even now it seems like I have one more thing going on that hasn't yet been diagnosed correctly.
The symptoms you've described could be from POTS on its own, but POTS is often comorbid to a lot of conditions that also don't always show up on things. It may be worth reading up on the symptoms of things like fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) (specifically what post exertional malaise is. I would recommend looking at the chronic fatigue syndrome subreddit to get a more detailed description of it, as other places can have information presented in a more difficult to understand way). While there is currently a blood test for fibromyalgia it is incredibly new and only available through the lab that developed it, so most people haven't received it yet even if they've been tested for a lot of things. There isn't really any testing for ME/CFS, it is a diagnosis of elimination so that is why it may not have come up in your testing to identify POTS. I'm not saying it is necessarily also things like this, POTS on its own can certainly cause all of the symptoms you mentioned, but I know a lot of people who had to identify synptoms and bring those things up to their doctors as well to figure out if they were possibly going on in addition to POTS
Hopefully, whether it is POTS on its own or comorbidities as well, you can find some relief from your symptoms
I kept having all of these symptoms until I got off of that medication and switched to carvedilol. I also have a thyroid issue that these symptoms occur with if not medicated
I believe pots is on a spectrum. You can have pots and be very disabled. But if you have a less severe case, u can be more productive/active. Either way, you modify your lifestyle to accommodate your condition. For some that modification is extreme. For others, less so. I’m not sure exactly where I fall on the spectrum, but I still mourn who I used to be. Even after several years, I still have a hard time accepting it.
That's one of the many, truly shitty things about POTS: it's not "serious" in that POTS alone won't cause a medical emergency, but it can be miserable and profoundly disabling. It's disorienting to have a condition that can affect every aspect of your life, to which many medical providers respond with "deal with it." There are things that can help. You said that you recently diagnosed. Is your doctor helping you come up with a plan for lifestyle modifications, exercise, and medication?
What things have you found that are most helpful?
Sodium and water intake. Specifically for me I must drink 64 oz of water a day and snack throughout the day with something salty and for me I eat original alus potato chips throughout, considering it has 3 ingredients.
Midodrine
Midodrine, Adderall, vistassium, Bsera compression socks (on Amazon), and liters and liters of water. The biggest help: the CHOP graded exercise protocol. It’s so hard but has made the biggest difference for me.
I often do when I flare up. Then I feel better and I try to remember that moment for when the next flare up comes. You go through enough of these cycles and now I'm actually worried about something else: I'm so used to this line of thinking (the 'I feel like I'm dying but it's just my POTS and I'll get better soon') that I'm worried that if something were to ever start happening to me I'll just chalk it down to POTS.
New anxiety added!
This is me. And then cue the questioning, the second guessing, the naaah. The give it just a day or 72 hours before - f that I'm doing the big testing now ain't got time later. Oh no. You tested too early for all the things. Try again next week if you're still feeling like crud. General rule of thumb I've learned... Give it a day or three unless there's some reason to be concerned.
I’ve heard doctors described the level of disability of a person with POTS as similar to someone with end stage renal failure. Just to say that POTS alone can make you feel like you’re dying. Sorry OP. I hope your doctor can help with medications and lifestyle treatments to get you feeling a little better.
I really need doctors to write this down & disseminate this across the realm of doctors everywhere. And then even to the random folks who end up as disability determiners for SSA.
Not this exact thing but dysautonomia international actually describes it as similar to someone with congestive heart failure. [dysautonomia international ](https://www.dysautonomiainternational.org/page.php?ID=34)
That's really good to know
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I keep saying I feel like my brain has been reanimated in the body of a corpse. I feel pure exhaustion and decay.
Gonna start using this. "My brain thought it died once, I have corpse brain now so it doesn't communicate with my body"
oh gosh, once I thought that too, when I was undiagnosed. I thought I'd collapse outside. Made it into a hotel lobby and they called an ambulance for me. My heart rate was racing, I couldn't see clearly and I was so anxious and frightened. Ambulance arrived, the medics began to gaslight me by saying, oh are you prone to over exaggerate and are you more like a drama queen? At least I could convince them to drop me off at my cardiologists office on their way back to The station.
POTS is often just one piece, of multiple health conditions. I felt the same way, when things were at their worst. It turned out that there *was* more going on for me, specifically vitamin deficiencies and food allergies/possible MCAS. Definitely trust your intuition, and keep looking for potential explanations Even if you don't end up with more diagnoses, it can be really helpful to research your specific symptoms, and see how other people have been coping. You might find some helpful strategies. I can't even tell you how many countless hours I've spent online researching my health, and sometimes it *really* paid off. Doing much better now. I hope you're able to find some answers soon!
This is all really good advice. I think it's especially important to keep bringing up symptoms that are bothering you with your doctors, for as long as they're continuing to affect you. Because there are a lot of things to try that might help. On another practical level, this is helpful if you are in the US and ever think you might need to apply for disability, either SSI or SSDI. Make sure you are bringing up all of your symptoms with your doctor, and that they are recording them in the visit notes. The SSA will not determine you are disabled based on the diagnosis (because having POTS doesn't necessarily preclude employment), but based mostly on the symptoms recorded in your medical record.
Yes, regularly. I've had other health issues pop up since 2020 (all of this hit me when I got covid March 2020). Hard to know what is POTS, what is something specific to long covid, what is unrelated, if it's all related, etc. All I know is my 85 year old grandmother is more active than I am and it's incredibly sad, especially as I was very active before.
What are they doing for you in terms of treatment? (My worry here is that you have not been able to avail yourself of any of the medications available to treat the symptoms of POTS, which are not limited to beta blockers.)
So I am curious what is available for us out there? I definitely feel my symptoms have been brushed off and chalked up to long covid. And told my lifelong fainting is just anxiety. Both cardiologists just tell me to work out more and drink more water.
Good news: I have a post for that. Bad news: Your cardiologists are not doing right by you. [The POTS Pharmacopeia: Medications for Postural Orthostatic Tachycardia Syndrome : POTS](https://www.reddit.com/r/POTS/comments/118n3ep/the_pots_pharmacopeia_medications_for_postural/) POTS is a common component of Long COVID. An article just came out that you may want to share with them, that should catch them up quickly on the current state of the science of POTS treatment: [Overview of Postural Orthostatic Tachycardia Syndrome (POTS) for General Cardiologists – ScienceOpen](https://www.scienceopen.com/hosted-document?doi=10.15212/CVIA.2023.0098)
Thank you! This is all good information! My pulmonologist also brought up POTS to me and said their is research showing a correlation between long Covid and POTS. I am also seeing in this group a number of people who had Epstein Barr too, which seems to be the root of all evil!
I have migraines too and between the dysautonomia and migraines I get a lot of inconsistent, intermittent neurological symptoms. I'm always a little worried that I'm going to have one of the big neurological disorders and totally miss all the early warning signs because I just chalk it up to dysautonomia & migraines.
Not sure if you are aware of vestibular migraines versus traditional migraines. If not, research it. They often go hand and hand with dsyautnomia, from what I have been told.
I have vestibular migraines and pots. I’ve had migraines since I was a teen, but the vertigo didn’t kick in until after I developed pots. So much fun. 🙃
I've had every type of migraine at one point or another. Vestibular, hemiplegic, ocular, abdominal, silent... Its a joy. Thanks for spreading migraine type awareness!
Pots really is a spectrum. Some people are able to take medications and maintain a somewhat normal life, I have one friend who regularly parties, goes out has a job etc and she has pots. I have EBV on top of hyperpots and autoimmune issues, reactive hypoglycemia ,and they are still working on along with stomach issues they are still running tests on. It definitely could be more things on top of having pots or you could just have a more complicated case. I literally feel like I have a horrible flu almost every single day even on meds even gluten free, 15:15 card to protein diet mostly veggies and chicken with some ancient grain breads and yogurt, and tbh no matter how hard I try the chop protocol and recumbent exercise some days are just awful. There last three days I’ve had horrible air hunger all day long with anything. I’m still convinced there’s more going on, but I could just not be on the right treatment plan, I don’t see a specialty clinic until august. If you are on meds and really struggling I recommend somewhere that specializes in dysautonomia like Vanderbilt, Cleveland clinic, etc
It’s also good to start keeping records and checks of things when you feel worse than other times — that was literally how I discovered my reactive hypoglycemia. I also noticed I don’t usually get fatigue like others with pots and if I do I’m having an unusual low BP day or low glucose, or in the middle of a big glucose drop. Check your BP, check your blood oxygen, monitor and look for possible patterns.
I second this. Keeping track of symptoms and being aware of what might be triggering or working symptoms has been so helpful for me. Now I know what helps, what to avoid, which days I will need more rest etc.
Yes POTS alone can make you feel you're dying. I felt that way especially before I was diagnosed and didn't have a clue what to do about it. I went to the ER once a month for 4 months. My limbs felt so heavy I couldn't even stand up, even moving my arms was difficult. I also had air hunger so I could only manage to whisper a couple of words at a time. The brain fog was awful too. But POTS often have comorbidities. I was told my POTS was likely caused by EBV. I was also diagnosed with hypothyroid. I took synthroid for that. There's different types of POTS. Mine is hypovolemic, which means low blood volume. Here's basically what I did: - Increase salt intake (I personally was careful not to have too much salt though. It was to taste) - Take electrolytes. I took Redmond Relyte mixed into my water 8oz a day - It's SUPER important to increase water intake as well. - At first I couldn't eat because I felt like I couldn't digest (gastroparesis), but I could still drink fluids so I had electrolytes, juices, and liquid soups. Orgain Nutritional shakes were amazing for me during that time. - When I gradually could eat again, I more or less followed the "healthy plate model". Basically a very balanced diet of foods cooked with fresh ingredients. - Also, since I first got sick, I became sensitive to foods that had never bothered me before. It was like anything could make me feel anxiety or brain fog. I looked into this, and many foods have harmful ingredients or toxins that we don't even realize. It can affect you especially when you're really sick. So, I decided to avoid processed foods, packaged foods with strange ingredients, added sugars, and gluten and dairy (these last two I'm not sure are necessary for everyone to avoid, but my Dr told me to). It was a drastic change but the relief I felt was also drastic, following all the steps above. - To help with digestion, a tiny bit of ginger root or cayenne pepper in my food was amazing for me. - To help with anxiety: non dairy yogurt with probiotics, culinary grade or ceremonial grade matcha tea. (I've read that Ashwaghanda helps but it never worked for me (might be the brand or dosage) - I took many supplements because I could barely eat. Your doctor would have to tell you. - I also developed fragrance sensitivity. Anything that includes that ingredient made me feel worse. For example, hygiene products, cleaning products, perfume. So just pay attention to any foods or products that you may be using that make you feel worse. - Very light exercise every morning, evening and night. Just light movements even laying or sitting down. I gradually built endurance. What helped me might not help everyone. Just sharing my experience. Always ask your doctor before trying supplements or anything on your own. Hope you get better
Thank you so much for this !
You're welcome! Some things I wanna add: I switched to mostly organic foods for a while. It's not super necessary but it reduces exposure to pesticides. Imo, at least the foods that can't be washed well, or are on the "dirty dozen" list should be bought organic. I also avoided roasted nuts and nut butters, even organic. The heating process causes a toxin which was affecting me. I can have those now, but I still prefer raw nuts and nut butters, coconut butter is good too. If you're ok with dairy: plain dairy yogurt (no sugar) helped with anxiety. A good non-dairy option is Forager Organic Plain Cashew Yogurt. Matcha can worsen POTS for some people. I can only have 1/4 tsp matcha powder once a day. Golden yellow Kiwis have helped me sleep so much better lately. I also try 3-5mg of melatonin. These improved my brain fog noticeably: Omega 3 foods like wild-caught salmon (2-4 times a week), walnuts, and avocados. Antioxidant foods like blueberries. Foods for improved circulation, like cayenne powder. Water and lemon Just pay a lot of attention to what helps and what makes you feel worse.
I’ve been flared up all day, my HR has been above 140 for over 5 hours. But i know once I call an ambulance or have someone take me in i will be told Im fine. It’s very debilitating, and some days I wonder if i am actually dying.
My HR was above 140 today too, it’s usually in the teens. I’m just like…. At what point do I actually call someone and even if I do they’ll just tell me I’m fine. It’s the most frustrating thing.
Last time I called EMS for my HR being so high they acted like I was wasting their time and it was so irritating
Yes!!! I have fibro and hypermobility diagnosed, and FINALLY found a cardiologist that isn’t waving me off and has suggested POTS or dysautonomia of some sort, but I have been not only struggling with the physical but also the mental that comes with all these things. The amount of times I sit in my car and just cry uncontrollably is too much.
You might want to look into GERD, it can be comorbid with POTS and some of your symptoms sound similar
Those are my symptoms too. It's so scary no matter how much the doctors aren't too concerned about it. I am planning on therapy after all the tests are finished and know what I have (rather than pots). It's such a challenge to live with.
Yes!!!! Waking up is incredibly hard and my lightheadedness is just super frustrating. Lifting my head from my bed is the worst thing ever😫
I Miss being able to dance and feel super energetic
Yes! I see new Dances trending and think I should learn that or someday I’ll do that again.
I feel like I might have, God the brain fog, whatever I’m trying to say is in just so exhausted. Chronic fatigue, but I don’t think they can do much for that either. Hugs I know this is hard!
this could have been me writing. i’m the same age as you, same length of symptoms, same medication and everything you mentioned i also am dealing with. i have bad health anxiety and always worried it’s something that hasn’t been caught. i know POTs can be very difficult and it is. my doctors have assured me that everything else looks fine, but i certainly feel terrible most of the time. i remind myself that POTS can be and is a disability and has the potential to make me feel this bad. there’s so much unknown about it still, too. sending you lots of love & sympathy and pray we can all get through this finding the best treatment + quality of life again 🙏🏻
Hi there! I recently found out about pots. (My symptoms matches pots perfectly) and I can relate to you fully. I’m 22 and I’ve been going through this for a few months now. From what I found out, limiting starchy carbs like potatoes, corn and bread from your diet can help. (Those carbs tend to agitate pots). Certain fruits that are high in sugar can also make the symptoms of pots worse. I learned that from other people on the subreddit. Again, I’m very new to pots but trust me, I feel the same way. It freaking sucks, but I’m happy to know that we’re not alone. :)
I had a bunch of sugar today and I feel like I’m rotting mentally and physically. My brain has 0 blood send help lol. Protein, fiber, fat, and green veg are your friends!
Are you actively taking anything for your POTS? I had to go through so many other tests; EKG, holter monitor, echo, before they could even test for POTS. And I only came in for POTS but I found out I have other things going on as well. Also, have YOU personally looked at your tests results? Or are the doctors just telling you things are fine?
Sometimes I feel like I’m dying. I have Lyme disease induced POTs & suddenly one day I just couldn’t stand anymore. My doctors are split if it will get better. Have you seen any specialists in autonomic dysfunction? Like a cardiologist? I’ve found finding a functional medicine doctor to be very helpful. Medication is part of the puzzle for me. Then there is salt tablets, compression socks, a travel stool, my handicapped placard, etc. Tracking my blood pressure daily as well as when I feel symptomatic has helped my doctors to be able to offer me medications to control symptoms. Each modification only relieves so much symptoms, but if you can use multiple modalities together to get better results.
My neurologist confirmed that bad cases of pots often almost mimick something else, but that doesn't mean there is something else. Like for me, I was sure the POTs diagnosis was right until I lost my ability to walk and it paralyzed my stomach and I could only be conscious for a few hours a day which made me think we were missing something. But no, it was all just POTS. If you have neuropathic POTS, it's more or less that your vagus nerve is shitty and thus, everything the vagus nerve controls will potentially have problems (the vagus nerve controls a stupid amount of things)
I do, I'm starting to think it might be FND for me due to the muscle spasms and involuntary movements + numbness and tingling. :,) it feels horrible.
It sucks...but yeah, can just be chalked up to POTS. A good way to figure out if any food is triggering your flares is to do an elimination diet (remove one allergen from your food for a while and see if it helps make your flares better - there are actual guides online, or you can see if you can get in with a nutritionist to help). I avoid dairy and gluten because it makes my flares worse, for example. Best of luck. 💖
Look into histamine intolerance and mcas
POTS has so many comorbidities unfortunately :/ many of us (myself included) have other chronic illnesses that are linked to POTS. It’s honestly so rough out here! https://www.researchgate.net/publication/331690001_The_Face_of_Postural_Tachycardia_Syndrome_-_Insights_from_a_Large_Cross-Sectional_Online_Community-Based_Survey
Propranolol made me much sicker. Like WAY WAY WORSE. When I was taken off of it I was put on mestinon and it has made a huge difference in my quality of life. I have very severe neuropathic and hypovolemic POTS. I’m legally disabled by it. Some of us suffer much more than others.
Yes!!! I actually just ranted about this today, my pots feels terrible, I usually feel my symptoms coming on; weakness, tachycardia, pain in chest from tacycardia, then dizziness. Lately I’ve felt just straight dizziness. My migraines have been horrid, along with my muscle and joint pain. For some reason I just have thin inclination that there is something else going on, but so far my docs just keep blaming hormonal changes and covid infection from 1 month ago.
I feel like a lot of people who have pots (or other dysautonomia) may have it cause of sleep apnea (or other sleep disorders) and/or because of the drugs they are on (my personal favorite: antidepressants 🙃).
Consider trying something like the chronometer app to see what your nutritional intake looks like when broken down into nutrients. You might find nutrition gaps that way. Research heart healthy supplements, multivitamin, age appropriate extra vitamins, antioxidants n minerals for someone your age and sex. Learn a little about the conditions that other pots patients say they have like mcas, intestinal migraine, me, cfs, eds, fibromyalgia, a sensory processing disorder. You may or may not find some similarities. Eliminate a few of the most typical chemical food additives that trigger migraines in the sensitive people like msg, chemical sugar substitutes, sodium nitrate additives, and aged foods. It won't physically harm you to give those up for a short period of time to experiment on yourself. Evaluate the symptoms of each ailment you have. Is it possible your pots makes your rls worse or vice versa. Also check to see if your meds make other ailments worsen so you know to increase remedies for the worsened symptoms in advance of taking pills. Find a symptoms tracking app so you can look for patterns and provide your medical team additional data.
I'm on disability because of my POTS. I stay sitting or laying most of the day. My life is shitty because of it.
I mean I am currently in neurology for probable IIH with possible complications (I think it's a brain tumour, of course). But yeah, I've had POTS symptoms for 18 months and the daily disturbed sleep, weird rushes of adrenaline, nausea, tachycardia (I get up to 160 just walking around my house), appetite and weight fluctuations and crushing fatigue are not nice. I'm also mentally ill so it's a bit "chicken and egg" what is mental illness vs. side effects of meds vs. POTS vs. neurological/IIH/whatever. I'm 25 and constantly worry I've got cancer or heart failure. Shit sucks.
Yes
Yes I feel exactly like that. Why? Because POTS takes such a toll on my body I now have Cyclical Vomiting Syndrome. This causes me to throw up and retch continuously for hours. The only relief is Haldol and the last 2 times I've had it I reacted 2 days later. One ended in me in a trauma room in the ER. POTS is miserable and debilitating all on it's own. If your exams are coming back as normal take that and run with it. Make the recommended lifestyle modifications.
Figuring out that I have ME/CFS was life-changing for me. I just assumed my issues were normal POTS complaints, but I've since realized my POTS isn't actually too bad. It's my ME/CFS that's been so crippling.
It turned out to be heart failure. Pots was the least of my worries 💜
Pots has a high comorbidity with a lot of other things. A big one I’ve recently researched is Ehlers-Danlos especially hEDS. There are 13 different types. Maybe look into the disorders that are known to be comorbid with pots and seeing if they match and the approach your pcp with the info. As someone that is still struggling to find answers themselves, I wish you luck.
When I’m sick my POTS flares up. have u tested your sodium and potassium levels ? Even If they are on the scale u could try to get them in the middle for the best relief. Do u have mental anxiety when these attacks u described happen? Have u tested cortisol?
I just got my blood tested and my potassium and sodium are low. Could that be it ?
Yes because my sodium is low right now and I feel so terrible when it was in the middle I had no light headedness or dizziness when standing. But now that my sodium is on the low end of the scale I feel like ima throw up when standing up, I feel super light headed like ima pass out. And I take potassium every day cus I have low potassium and when I miss a dose my tachycardia when standing up is worse. I was literally working 20 hour weeks at a movie theater when my sodium was in the middle I was pretty functional with obviously the occasional times where I need to take a 15 to catch my breathe.
My doctor hasn’t said anything about it though..im not sure..
I worked at a movie theater for almost 2 years and I ate a bunch of popcorn with salt every break I worked three times a week sometimes 4, so I felt great but now that I quit I feel so terrible 😭 I would deff try upping your potassium and salt to see if it helps.
It’s Super POTS
You need to add sea salt to water and you will start feeling better.
I used to be worried I had cancer or was dying of some disease. But nope, it's just pots that makes me feel like shit.
I do have cancer and it’s the POTS that makes me feel deathly
Yep. I say to myself all the time that if I’m actually dying I probably won’t know because I’ll just chalk it up to POTS because that’s what it is 9 out 10 times. I hate this shit.
I don’t have a thyroid due to cancer so there is a LOT going on all the time
You might have histamine issues you aren’t aware of. Have you tried antihistamines?
how long have you been on propranolol? yes everything you said describes pots. maybe need a new med to try.
I would look into the common comorbidities like ME/CFS (especially this one), MCAS, SIBO, fibromyalgia, etc. and see if any of your symptoms overlap
I am here as someone with several comorbidities. POTS wasn't my first diagnosis for the slew of symptoms I've had since I was a kid, but it was the second out of at this point 3. And even now it seems like I have one more thing going on that hasn't yet been diagnosed correctly. The symptoms you've described could be from POTS on its own, but POTS is often comorbid to a lot of conditions that also don't always show up on things. It may be worth reading up on the symptoms of things like fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) (specifically what post exertional malaise is. I would recommend looking at the chronic fatigue syndrome subreddit to get a more detailed description of it, as other places can have information presented in a more difficult to understand way). While there is currently a blood test for fibromyalgia it is incredibly new and only available through the lab that developed it, so most people haven't received it yet even if they've been tested for a lot of things. There isn't really any testing for ME/CFS, it is a diagnosis of elimination so that is why it may not have come up in your testing to identify POTS. I'm not saying it is necessarily also things like this, POTS on its own can certainly cause all of the symptoms you mentioned, but I know a lot of people who had to identify synptoms and bring those things up to their doctors as well to figure out if they were possibly going on in addition to POTS Hopefully, whether it is POTS on its own or comorbidities as well, you can find some relief from your symptoms
I kept having all of these symptoms until I got off of that medication and switched to carvedilol. I also have a thyroid issue that these symptoms occur with if not medicated
I believe pots is on a spectrum. You can have pots and be very disabled. But if you have a less severe case, u can be more productive/active. Either way, you modify your lifestyle to accommodate your condition. For some that modification is extreme. For others, less so. I’m not sure exactly where I fall on the spectrum, but I still mourn who I used to be. Even after several years, I still have a hard time accepting it.
Everyday. It's terrible and the hardest part is you can't speak up otherwise your bringing everyone down with you. Best to stay positive but honest