Tachy Matt

So the other day I went to see my neurologist and like always he took my BP from lying to standing. I was lying down for 5 minutes and then sat up and immediately had extreme dizziness and lightheadedness. I then stood up and had my BP taken although symptoms still persisted. The only thing is my BP was 120/73 and heart rate of 87. Yet after that one event, I felt super weak and fatigued for the rest of the day. I guess POTS just doesn't make sense at all.

Patients with POTS/dysautonmia don't always have low blood pressure upon standing; in fact, I too have high blood pressure upon standing and still am prone to experience some of the symptoms you listed. The main issue with something like POTS is the blood flow upon standing and not necessarily the blood pressure number. My blood pressure is sometimes perfect upon standing, but I'm still very symptomatic because blood can start to pool in areas such as my legs or lower abdomen. I'm not a doctor, so please take what I say with a grain of salt, but I do believe it would be wise to explore the option at the very least. Some of the symptoms you listed are the hallmark signs of what we Potsies experience daily. Best of luck to you and your wife!

I was feeling really good for the first 20 minutes and then, after I finished, i had to rest for an hour before I got up to do anything else around the house. Usually, I walk for thirty minutes a day outside, but it is getting extremely hot where I live, and so I look for alternative exercises to do indoors. There is a gym by my house, so I sometimes go there with my brother (who is studying to be a physical therapist) in order to try to switch up my routine. I've felt pretty good in the past when I biked but I went a little longer this time and a little faster. For me, it seems like if my hr stays at 140+ for a while, I start to feel worse and feel a bit oxygen deprived if that makes any sense. Personally, I've always felt better with a relatively lower hr.

What heart rate do you guys aim for when exercising? Specifically, is there a number that you don't feel comfortable exceeding like a 160 or 150? I was working on a recumbent bike today for thirty minutes and noticed I felt a little lightheaded and more winded than usual after I finished. I got my heart rate up to 145 at the end, but I'm wondering if that's too high or if I should do 2 sets of 15 minutes instead of all at once.

I used to eat bananas but then my gastroenterologist advised against it. I bought some coconut water yesterday and might try incorporating that into my daily routine, but that could get expensive constantly buying that.

How would you recommend supplementing potassium to your diet? I know that you have to careful if you receive too much potassium, but I assume a little extra won't hurt. I have heard coconut is a good source but was wondering if there is like a powder I could add to water in order to increase my levels. What do you do, and what works best for you?

Glad I could help. Like I said, I'm not sure why sodium bicarbonate would affect the stomach after a large meal, but I have read stuff where it just isn't the best idea. Maybe a 3:00 time frame would be best. That way it isn't directly after lunch and you still have some time before you eat dinner? Let us know how the baking soda works out for your daughter!

Many people use sodium bicarbonate as an alternative to salt for three reasons: it tastes better than sea salt, helps with acid, and is full of sodium in it. However, there have been negative reports about baking soda on how it can severely damage the stomach if you drink it after a heavy meal. Also, there have been reports of some "healthy" people developing alkalosis and salt overdose form baking soda, but this may not necessarily apply to POTS patients since we need salt. When a bicarbonate (like baking soda) reacts with the hydrochloric acid in your stomach, the result is NaCl (salt) and carbonic acid which breaks apart into harmless CO2 and water to be exited out your body. (This is why many people start to burp when drinking a bicarbonate). I use to do salt tablets but stopped doing them since they bothered my stomach a lot. My recommendation to you would be to call your doctor about the baking soda and see if you can make a baking soda salty drink for her throughout the day. Hope this helped!

Do you guys have more success with getting up at the same time each day, or just sleeping in (if you have nowhere to be)? I'm trying to figure out if there is any correlation between getting up early and symptoms. It seems like staying on a routine or regiment helps each day, but I'm wondering if I should just let my body wake up when it wants to (when i can sleep in on the weekends.)

Hi Lattegirl! I personally don't suffer from vasovagal syncope, but I would guess that the anxious and hot feeling is the result of adrenaline going through your body in order to avoid fainting. Remember, your body is designed to do so many different things, so sending out that adrenaline rush is its way of trying to compensate for the blood pressure decrease. I don't know for sure, but this would be my best guess as to why.

Have any of you taken baking soda as a salt supplement throughout the day? And if so, have you had any adverse reactions to it or unexpected side effects? I already drink a salt water drink in the morning, but I'm thinking about increasing my sodium intake a little bit, especially during these hot months. I'm on an ant-acid already (pantoprazole) and am not sure if baking soda would react with that somehow. Also, I've read stuff that baking soda can inhibit blood flow, may cause alkalosis, and that you shouldn't take it after a large meal. What are your thoughts?

That's great news Draven! But I'm still sorry that you have the condition in the first place. that's interesting that your hands pool at your sides because mine do the same along with my feet in the shower. I guess it all comes down to blood flow overall. With this Alice in Wonderland syndrome, do you ever get a feeling that you can't quite describe, sort of like a cloudy perception of your surroundings?

Thanks for all of your suggestions! The Alpha Delta Syndrome is interesting and helps describe the interrupted sleep. No wonder why we are so tired all the time!

Does anyone else struggle with insomnia at night? Mine isn't too bad but it's a little frustrating when I purposely go to bed early only to find myself unable to fall asleep for another hour and a half. Let me know what your thoughts are or what to do to sort of minimize this problem. Thanks!

I use to drink about a bottle of Gatorade in the morning in order to get myself going, but over time I realized that I didn't want the citric acid and artificial flavors. My gastroenterologist recommended I start making a mixture similar to the one that Katy described above me: half a teaspoon of salt and 3 teaspoons of organic cane sugar in a one liter bottle. I don't add any sweeteners because I don't mind the taste of it, but you could add something to it if you would like such as Mio or Truvia.

I have noticed I'm a lot less symptomatic during the winter since I can't stand the summer heat at all. I am starting to go for my walks after dinner when the sun is down in order to keep up my exercise without getting overheated. Although I don't personally use them, I would recommend a cooling towel or even a cooling vest as that seems to help some patients.

Hello Honey Bean! I am new to this forum as well even though I have suffered from POTS for a little over a year now. I would recommend you look around this site a little bit as it has wonderful articles and information for fellow POTS warriors such as yourself. My best advice for you right now would to listen to your body first and foremost and try not to overdo yourself or stress yourself out too much. Also, be particularly cognizant of the summer heat in Florida since that can bring on symptoms even more. Try not to spend too much time outside in the middle of the day so you don't wear yourself out. If you are able to, walking at night is the best time to get some exercise without the ridiculous heat.