Constant Dizziness?

[Nikki]

I was just at the doctor's yesterday and told him that even when I'm laying down, I'm still dizzy. Of course it's not as bad as when I'm up and moving around - but laying down doesn't make it go completely away. He said with POTs, I should feel okay when I'm laying down. I've read multiple places online that in some cases, you can still have symptoms even while being completely still. Does anyone else experience this or heard of it happening? I don't really know what to believe after the doctor appointment.

[potsgirl]

Hi Nikki~

Hmm. Usually most of my symptoms abate when I'm lying down, but that doesn't mean it doesn't happen to you. That closest thing similar to what you're describing happened to me when I had a virus in my inner ear. I was dizzy just turning my head slightly, lying down, sitting up, and don't even think about standing up! You may want to check in with an ENT doc to see if you're having inner ear issues.

Good luck, and let us know what you find out.

Jana

[Machair]

I was reading recently in an online article that many patients experience spells of supine or standing vertigo with pots. I think it depends on how severe it is and if you have low blood pressure at night and maybe are dehydrated.

I certainly get symptoms lying down but these are much less common that standing, and it is the standing which sees the dramatic rise in pulse rates.

My symptoms when lying down seem to be related to times when I have spent a lot of time standing during the day and so the problems are so much worse anyway.

Hope this helps.

[Maisie87]

Hey Nikki,

YESS I have dizziness lying down, sitting, standing is nearly impossible! My doctors said it is possible to have dizziness while lying down with POTS.. he couldn't expain why it happens but some of his other POTS patients have the same issue.

I'm checking with an ENT to make sure there isn't an inner ear problem.

You aren't alone. I really feel like I have vertigo sometimes, even when I am perfectly still.

maybe check with an ENT..

How long have you had POTS?.. you're 21 right? I'm 22, so if you need anyone to talk to you can message me any time.

feel better

Maisie

[Nikki]

Thanks for the responses! I was diagnosed with POTs a little over a month ago but my symptoms have been the worse within the last year, almost to the point where it is hard for me to do anything. I've also been diagnosed with migraines, so I think that on top of POTS is just way too much for my system to deal with..I've always been a little dizzy (I also hit my head many years ago) but before this past year, I was still able to go out and do things. Now it seems nearly impossible. :-/

I have been to an ENT, and had my ears checked, the VNG testing done (with air), he sent me to another ENT who gave me a ABR test which was fine and also had a CT scan done of my ears which was also, fine. So I really think my ears are okay. The last ENT sent me to the heart and vascular group I've been seeing now, who diagnosed me with POTS.

Maisie - I'm sorry to hear you have lots of dizziness too. It's so difficult to deal with. I guess we just gotta hang in there!

[extern14]

Nikki,

I have the exact same problem. The dizziness & vertigo stay with me all the time but, of course, gets worse once I stand or walk. I have only been tested for POTS and a few other tests so I know there must be something more to this than just having POTS. My symptoms stay with me all the time not just when I am standing. I went to an ENT and he told me that I was depressed and stressed. So now what? I hope you get your answers. I am in the same boat you are!

[bkweavers]

My daughter also has had times when she was very dizzy when lying down. She was diagnosed at age 10 and between 11 and 12, she would get episoded 2-3 times a month where she was so dizzy, she could hardly move! She would sometimes spend her days clinging to the bed or sofa. This would usually go on for 3-5 days and then would go away. At least, the bad dizziness would go away. She is still dizzy every time she sits, stand, or walks and she hasn't done any of those on her own for any significant amount of time for over 2 years!

Happily,these episodes have now been fewer and farther between in the last year.

Tell that doctor that he's wrong and that there are other people who have experienced this.

I hope you find something that helps you and/or I pray that this constant dizziness will improve and go away.

Brenda

[ramakentesh]

I can get dizzy at any time - standing is more likely, as is sitting but ive got dizzy in the morning while in bed after a night of sleep. Dr Stewart says that in many cases the circulatory irregularities in POTS are present at all times and are just made more obvious by standing.

[lauralulu]

I can get dizzy at any time - standing is more likely, as is sitting but ive got dizzy in the morning while in bed after a night of sleep. Dr Stewart says that in many cases the circulatory irregularities in POTS are present at all times and are just made more obvious by standing.

I get this too sometimes (dizziness even when laying down) but I'm undiagnosed so who knows why. One thing I have noticed though since monitering myself is my blood pressure in a morning is often pretty low, so perhaps that's why. What that Dr Stewart says sounds sensible, I mean when you think about how different we all are just on the surface, it makes sense that we can present different and 'unusual' symptoms depending on how one's own nervous system is functioning!

[MomtoGiuliana]

I also can feel dizzy at any time. Usually worse when standing, but when I had severe symptoms I recall having round-the-clock dizziness, and most of that time I was not standing!

[Nikki]

Wow, well I hate to hear that everyone else experiences this too, but it makes me feel like it could just all be POTS related and that something else isn't wrong as well. I've really had so many tests done that all came back fine except the tilt table. So hopefully if they get some of my symptoms under control, this constant dizziness will eventually go away some!

[bellajulz]

Just wanted to add that I too on a bad day feel very dizzy even while lying down, and have fainted many times in a sitting or flat position. Though most docs have told me it shouldn't happen, once I'm in an "episode", it doesn't matter if I'm standing or laying down.

[Guest tearose]

Yes, I get dizzy. I have to work at not being symptomatic. Mornings are the hardest with my bp at its lowest.

[ethansmom]

I'm one of the unfortunate ones who experiences 24/7 dizziness to varying degrees. Some days I have vertigo, and standing alleviates the sensation of motion so it's better. Lately, I've been mostly laying down because of the constant faint feeling I have when standing- so it can go either way for me. I've had lots of inner ear testing and everything checks out fine. Don't ever want to do those tests again either!

Also- I have a diagnosis of Chronic Lyme Disease, so I know I have a lot of inflammation and neurological issues- which can definitely cause dizziness and POTS-like symptoms, so i can't always tell the difference. Mainly I look for my heart rate and blood pressure- these last 3.5 months since I've been pregnant, my heart rate and BP have been hard to control so I know I'm dealing with the POTS flaring up.

[avidita]

I was just at the doctor's yesterday and told him that even when I'm laying down, I'm still dizzy. Of course it's not as bad as when I'm up and moving around - but laying down doesn't make it go completely away. He said with POTs, I should feel okay when I'm laying down. I've read multiple places online that in some cases, you can still have symptoms even while being completely still. Does anyone else experience this or heard of it happening? I don't really know what to believe after the doctor appointment.

Hi Nikki,

Dizziness has been my major symptom. It is worst sitting, sometimes lying down, never standing. I, too, had full ENT workup (several times). Too many tests to list here - all normal, except for a VEMP test (Vestibular Evoked Myogenic Potentials). It tests a part of the inner year that other tests can't so it is the only one that can show if something is wrong there or not. It's more of a functional than organic thing, but still. I would ask your ENT to do it, maybe there will be something there. Let us know how it goes for you.

M.

PS. I actually need to correct that. If I get a migraine (mine are vestibular migraines - vertigo, no pain) I am dizzy when standing up and better when lying down. But those are episodic, have had them forever, and have nothing to do with my everyday POTS symptoms or dizziness.

[ramakentesh]

Though most docs have told me it shouldn't happen

Your doctor is taking the name too literally LOL - Postural tachycardia syndrome - any doctor who knows a lot about POTS knows that the circulatory abnormalities are ALWAYS present and are only worsened by postural challenge.

PS. I actually need to correct that. If I get a migraine (mine are vestibular migraines - vertigo, no pain) I am dizzy when standing up and better when lying down. But those are episodic, have had them forever, and have nothing to do with my everyday POTS symptoms or dizziness.

Do you get these from reading? I get them from reading or using the computer too long. Problem for me was that vestibular migraine was a diagnosis given to me based purely on my description of them. Nowdays when i get a migraine my POTS is always TERRIBLE - im starting to think that the migraines were just bringing POTS out when it was latent and now it just hangs around all the time.

its interesting that some migraine sufferers experience episodes of POTS for a day or two afterwards.

[Nikki]

I also have migraines. That's another problem I have, I don't know what is making me dizzy. If it's the migraines or POTS. I only get vestibular ones as well..Very rarely get a headache. Years ago I had dizziness (I hit my head and that's when the dizziness started)..but I was still able to go out and do things. I felt lightheaded and got tired easily..but I would go for long hikes with my dad, go to auctions and stuff where I'd be walking a ton and even though I felt a little..off, it wasn't enough to stop me from doing things. This past year the dizziness has been terrible. It just feels like I'm on a boat or something, constantly..So any walking, or just being the in car for any length of time is very difficult on me. So I'm thinking maybe before it was just migraines or something from hitting my head that was making me dizzy. Now I think I'm worse because I'm dealing with POTS on top of how I used to be.

Has anyone ever been dizzy for a very long amount of time and then it eventually cleared up? Like for me, it's been about a year where I've been pretty much sticking close to home because of how I feel. I miss getting out and doing things..It just feels like I'm never going to be able to do the things (even simple things) I used to love doing..I don't know if that's a negative way of looking at it or just a realistic one. Anyone else ever feel this way? Did it get better?

[avidita]

Do you get these from reading? I get them from reading or using the computer too long. Problem for me was that vestibular migraine was a diagnosis given to me based purely on my description of them. Nowdays when i get a migraine my POTS is always TERRIBLE - im starting to think that the migraines were just bringing POTS out when it was latent and now it just hangs around all the time.

its interesting that some migraine sufferers experience episodes of POTS for a day or two afterwards.

With the exception of a few instances when I got a migraine out of the blue, all my vestibular migraines are brought by reading or being on a computer. It's weird, though, because it depends on how I feel when I am reading, too. Several times I've read 600+ page books in less than 24 hours (started reading 10am, finished 3 am the next day) with no migraines but they were interesting to me. But give me a textbook with a test the next day and I'm out in less than 2 hours.