Head Floating/Lightheaded?

Hi! I felt like that for awhile last fall. I ended up eventually being diagnosed with POTS. I would often have that feeling after being up on my feet for much time - especially standing still. My heart rate also ran quite high just in my daily life. When are your symptoms the worst? Is there a time of day they are worse or activities that make it worse? Do you have any things that make the "floating" better? Have you ever tracked your heart rate or blood pressure? If you share more things like that, I can tell you if it's like what I've experienced with POTS and some tips for what you could try without a diagnosis!

@kaitlynngist Awe, I completely understand what you’re going through. So, my doctor and my Psychiatrist think it could be POTS too based on my symptoms because I am hyper aware of my heartbeat also at times when I am laying down and it keeps my up but I mainly feel this lightheaded feeling or like my head is floating but not a true dizziness. It’s honestly just such an annoying feeling. I haven’t really noticed anything that makes it worse or no. Laying down helps but I can still function when doing stuff. It honestly just comes and goes. I’ll wake up with it sometimes or it’ll just happen during the day at any time. I haven’t an oximeter but never really track my blood pressure/heart rate but sometimes it feels fast if I do something simple as going up the stairs.

@kaitlynngist I am seeing a cardiologist in a few weeks and hopefully get some answers. I haven’t been taking Vitamin D prescribed by my doctor but the blood panel came back normal except a few things like the Vitamin D. I do take electrolytes too and that helps since I think I need salt. I really don’t have any other symptoms except this floating lightheadedness and occasional headaches so I was thinking it was neck related since I have text neck and get a very stiff neck so I am going to a chiro so hoping that helps. Please send any tips you may have your way. I really appreciate it! ❤️

@amyashling Your symptoms sound VERY similar to what my symptoms were before I got diagnosed with POTS. The way you describe your lightheadness/floating/dizziness is exactly how I felt (and still feel sometimes). Also, going up stairs was a huge trigger for me too. My heart rate would hit 160 easily just to go up one flight of stairs. The fact that laying down helps makes me think POTS as well. My understanding of POTS is that our blood pools in our legs when we're on our feet. Laying down means that the blood pooling down there can "drain" back into your heart and brain - making you less dizzy/symptomatic. Personally, I wear a fitbit with a heart rate tracker (I have the charge version, as I can also take ECGs on it). I appreciate the fact that I can see my heart rate at any moment. My cardiologist also checked and I was severely anemic. They said this can make these symptoms worse, so I've been on iron supplements for over 9 months now too.

When you see the cardiologist, I would specifically ask about POTS. Thankfully, my cardiologist was the one to suggest it based on my symptoms, but I know that for many people, getting a diagnosis can be hard - so I would ask. I had a table tilt test done and it was positive (I was told if your heart rate jumped >30 beats per minute when they tilted you from laying to standing then it was POTS, mine jumped 47). Since getting the diagnosis, I've made a lot of lifestyle changes that have made my symptoms more manageable. I consume a lot of salt. I was told to start at 5g/day initially, but we have since increased my goal to 10g/day (nearly 2tsp). I have a little kitchen scale and weigh 3g into my 1.5L water bottle. It took me a bit to get the tolerance to drink that much salt in my water, but I now can't stand the taste of plain water. I would try to increase your salt to see if that helps - but also be aware that if you don't have POTS, too much salt can be bad for you, so I wouldn't go as far as my 10g+/day to start. I also drink so much water. I typically drink 3-6L depending on what I'm doing that day. Having the salt in the water itself helps me retain the water, which increases my blood volume, and therefore makes me less dizzy. Another lifesaver has been compression socks. I wear thigh high ones. I just got mine off Amazon (I use Truform brand). I put them on when I get dressed in the morning and don't take them off until I go to bed. On a few occasions that I didn't wear them all day because I wanted photos without them on (i.e. graduation photos, etc), I felt way worse that day/night and the next day, so I try to avoid not wearing them. I am also really aware of trying to not stand as much as I can. Unfortunately, my job requires me to stand frequently. I have found however, I do better when I'm moving. If I can be walking, wiggling, crossing and uncrossing my legs, etc, while I'm standing there, the muscles in my legs compress my vessels more so I am less symptomatic.

If you get a diagnosis, I did physical therapy for POTS. The place where I went essentially took all POTS patients for our community. There was a lot of exercises done laying down, then sitting, and eventually even helping with the transition to standing and moving upright, all while monitoring my heart rate. I went for about 6 months. My cardiologist wanted me to go for 6-12 months at least, but unfortunately I moved and my new cardiologist says there is no place like that in my new community. However, if you have access to something like that, it may seem silly, but it is so worth it and I credit them for helping get me somewhat stabilized. I also take a low dose of metoprolol (25mg) once a day. We tried to increase to 50mg, but my blood pressure runs as low as 90/60 and metoprolol decreases it, so we can't increase it any more.

I know that's a lot, but I hope it helps! If you have other questions, please feel free to ask - I wish there was someone who helped explain some of these things to me when I was so sick and was waiting for answers! Best of luck

Thank you so much for your lengthy reply back. I really appreciate all the insight so much and helps me better understand everything. I am definitely asking my cardiologist when I see him for the first time to test me to see if I have POTS. Does the lightheadedness/floating feeling ever truly go away? I ask because I get mine at least almost everyday and it basically comes and goes all day. I can do normal activities but it’s more so such an annoying feeling. Has the medication helped subside your symptoms? I’m curious once I start these lifestyle changes and make small adjustments IF this is what’s going on, that it helps me, I’m praying that it does. I do notice my heart rates goes fast too when going up the stairs or if I ch age positions at night, it’s weird but I can feel my heart kind of race but then goes back down. I wasn’t too anemic they told me but I’m going to ask again incase I need an iron supplement incase. I do have the Whoop band which tracks everything so I am definitely going to start monitoring my heart rate to see. I pray this is an easy fix.

I have a few more questions:

Do you ever get like the head foggy feeling?
Do you get fatigued easily? If so, what do you do since they say caffeine can make symptoms worse?

Any foods that might trigger it?

My doctor and Psychiatrist both think it could possibly be POTS so I’m going to wait and see what the cardiologist says.

@kaitlynngist That is so much water. Gosh, I don’t even know if I can consume that much if my cardiologist tells me I’ll have to do that. I do try and get salt in my diet but I’m sure it’s not enough. My Psychiatrist told me to ask my cardiologist about propranolol which is probably similar to what you’re taking too, a beta-blocker medications.

@kaitlynngist I ordered the compression socks off Amazon and it’s a bummer because it’s so hot in Vegas all the time but I will wear them if it helps me like you said it helps. That is really good to hear. How long did it take for you to start feeling better I guess more so this lightheaded sensation?