About me: long story short, I have been to 10 doctors in 6 years, misdiagnosed twice, over 20 medications thrown at me, and finally bubbled down to POTS just 2 weeks ago. I am new to this, I was told I had vertigo and autonomic dysfunction. Now they believe it is POTS. I can't afford testing to confirm the level of it, but would love to have any tips of managing. Issues: dizziness, lightheadedness, nausea, heart palpitations, low BP, HR drop 20+when standing up God bl
Don’t know if this will help but I eat smaller meals more often, always have gravol with me, change positions gradually, I usually eat tostitos for salt intake since they don’t make me more nausous. Avoid huge temperature changes (dress in layers to adjust easily), avoid very hot showers/hot tubs/baths, and constantly try and sip water throughout the day. Also, a full night sleep is a must.
Thank you so much! Recently I have had issues sleeping, waking up constantly while asleep, any tips?
I have so much trouble sleeping too. I keep my room extra cool and use heavy blankets to help me relax. Every once in a while I use a sleep aid (sleep-eze) although I don’t know if that is bad for POTS but it allows me a decent night sleep. With time you figure out what works best for you for various symptoms by trial and error.
Yea, a lot of us have sleep issues, which only makes us more symptomatic. If you like blankets or quilts that you can feel the weight of, weighted blankets can be great. Sleep meds or herbal sleep aids are pretty common for POTS patients, too. If you are into essential oils, I can tell ya a few things that kinda help with POTS.
Yes, I regularly use Essential oils, typically lavender, pepermint, and bergamot are my go toos
Rosemary helps lower cortisol levels, so if you are adrenal type, it helps. At night, I love lavender, cedar wood, vetiver, and jasmine. I think I do 3 drops, 2 drops 1 drop, 1 drop. I made up an empty bottle so I could just put 2-3 drops overall and get a lighter scent. I plan on testing a spray bottle this summer of witch hazel and a few drops of peppermint and spearmint to spray on my legs and pulse points. It should help avoid overheating.
Taking magnesium and potassium at night help me. As well as reducing screentime and/or using a blue light blocker.
Classic POTS! Potato chips is probably the majority of my salt intake. I eat ham as well and put salt on EVERYTHING. I don’t really know how to keep track of my sodium intake. I used to drink about a gallon of Gatorade a day
I take midodrine now, and thank you
I’m like you. I LOVE chips! Eat a bit most days
I hate pickles, too. I eat slim jims, funyuns or super salty popcorn occasionally. Usually I just take saltstick pills, though.
They're otc. Amazon & ebay both have great prices on them.
My daughter takes salt stick capsules and it helps her all day. You can get them online or at a rei store. But our go to snack was cheez its! Now that she has to be gluten free and dairy free I will be trying to make her snacks.
Great thank you! I'd love some recipes if you find any successful ones
Janee sure! We are just starting out on the diet so im still learning! Lol
As am I!
Your hr drops when standing up?
Yes. Like if my heart rate while I'm sitting at my desk is 85. When I stand up it drops to between 60-70 then slowly goes back up
Did they say why they think it's pots?
Is your hr ever really high?
Yes. I had a time where I was just sitting doing nothing and it jumped to 125. It has been on the 90s the best couple days.
They think I have POTS because of my symptoms
Bummer, sorry to hear that
2014 they said vertigo, 2016 they said autonomic dysfunction, now 2018 they say POTS.
I have tried veggies straws but it make a me nautous
Yeah I've been fighting this since 2017. Such a long journey. I can't tolerate the salt tabs because they make me nauseous too. If I'm really symptomatic I'll just pour salt into a little water and slam it. That usually helps right away. I wish you luck and hope you find what works for you
Thank you, good luck to you as well
I feel your frustration. I have some similarities to you. Just so you know, autonomic dysfunction is the umbrella term that POTS falls under. So you probably DO have that, and they’re trying to figure out which kind. I definitely have dysautonomia (autonomic dysfunction), and I don’t fit the POTS criteria exactly (sounds like you don’t either), but it’s the type I fit best. I’ve FINALLY gotten much better control of my symptoms with exercise focusing on adding lean muscle tissue and taking Nuun tablets for salt. I have to take them right before I eat or I have horrific hypovolemia.
This is confusing to me bc I thought heart rate goes UP when you stand if you have POTS. That said, trying reasonable suggestions to see what helps you is a good idea (everyone with this diagnosis is different & responds to treatment differently). Just don’t assume that what worked for one person will work for you. And never give up searching for something that will work for you. Best of luck!
Do you like olives? They're really high in sodium and a quick snack. Jerky is great too
No I dont but I do like jerky!
I have autonomic and POTS as well as another neuro disorder. Maybe you have both. We have the actual machine to test available here to be tested. Maybe that would help with your diagnosis. My dr suggested a Gatorade every day
What does the machine test? If you don't mind me asking
Janee well it’s called a tilt table test. They have all these machines they hook up while they’re doing it. Sorry I said hay confusing lol. Here in KY it’s the only office in the state that has it.
They acted like a lot of dr’s just guess. He showed me stuff on the screen to explain how the test gives a more accurate diagnosis. For she autonomic disorder that is
No you're fine haha! Nd I had a tilt table test preformed on me a couple years back, it came back clear. I felt terrible but they said nothing alarming. My current doctors in Cleveland wants to run a more dramatic tilt test here they put me on the table but also make surroundings move while measuring my HR, BP, sweat production
Janee that’s interesting. Hopefully it helps. Mine was crazy. He walked in the room and said we’ve got problems . then get on the computer it was like typing stuff for five minutes give me a heart attack I was afraid I had a brain tumor or something lol. Oh he also found that I had a severe B12 Deficiency and put me on shots… My regular doctor never called that because routine blood test don’t check B12. That has definitely helped with my energy levels
Thank you so much
I take salt tablets and I love sourdough pretzel nuggets. They help calm my stomach when I'm neausous
Pretzels are my go to for everything, I will have to try the sourdough ones though! Can you get them anywhere?
Ya. Snyder's makes really good ones
Pretzels, chips, popcorn,
These are really good and POTS friendly! They’re healthy, have salt, and are gluten free. I get them at Publix but I’m sure you can find them elsewhere.
I will certainly try and find them! Thank you!
Janee no problem I believe they also come in other flavors
Salt and vinegar chips
I love these, just need to get more!
Broth, especially bone broth, is probably the best salt intake. I love peeling grapefuit like an orange and salting the slices, same with green apples. Most prepackaged meat is pretty high, especially the snack ones like jerky and slim jims. There are a few different options for powders to add to drinks that may help greatly. The one I have tried is bananabagdrink dot com, they will send a free sample if you request it. It tastes like a multi-vitamin, but helps some of us tremendously. If salty foods aren't palatable, there are multiple options in salt tablets, and they are otc and also on amazon.
This depends on what meds you are on because for example flourneph provides her salt all her Dr wants her to do is add salt to her 6 small meals a day and stay away from high salty unhealthy snacks expecaly Roman Noodles she said they were doing more harm than good. I am by no means a judge and jury if eating like that makes you fill better then that is your goal to fill better we were also told not to drink sports drinks and that the iv were short term not long term affective and she has to drink her flouids that was the best way for it to be helpful long term she is on flourneph.1 milagrames 2 x a day
I am on
Desmopressin Acetate 0.1 MG (1 x a day)
Pyridostigmine BR 60mg a day
Only thing I can suggest is to talk to you pots specialist about ur salt intake with your meds. Medatrrain diet has done alot of good for my Sarah
I've been salt loading for the last 15 years and now I have osteoporosis
What exactly do you mean by salt loading?
Eatting lots of salt. And then my body said . Too acidic thus more calcium from bones to neutralize.
Also we are not low in salt! Something else is going on!
So it is good or bad to increase salt? Sorry I am confused
For me it is not the answer. Never really helped me. Now on bio hormones I retain water. But I know there's gonna be a side effect from this too.
You have to decide for yourself. I don't agree with salt being the answer.
I am open to trying different things, have been for 6 years now. I appreciate your input! I hope you get feeling better
I stopped doing salt, I need mixed electrolytes so do drinks and rehydration pills
Drinking a whole Pedialyte within an hr instantly helps me feel better, I also cut up apples and bananas and mix in 2 tblsp of peanut butter, mix it together and sprinkle with salt and that helps me alot too. Those 2 are my go to' s when I'm in a flare
Gatorade and bags of jerky are ALWAYS around for me!