Hello everyone,
I have a dizzy question. I know so many of us suffer from dizziness. The word dizzy is used to describe many different sensations. When you say you feel dizzy is it that the room is wobbly and you are unsteady or do many of you experience true vertigo where the room is spinning around and around. I have seen an increase in both. I was told I had vestibular issues (deep seated that would not show up on any ENT tests - not Meniers or inner ear but neurological). I was also told at some point that POTS can cause true vertigo as well. I also just get plan dizzy where I am off balance. Then, there are those instances when I have a quick jolt of something like I've been pushed or like someone is pushing down the top of my head and trying to push me straight into the ground. It's like when I'm upright I'm in a constant battle with gravity. I'd probably do well living in outer space....
Anyway, I'm just wondering if for those of you who say you are "dizzy" if that includes vertigo and other weird sensations as well....
Thanks for humoring me!

Ok, glad to help g'friend! Hope it does.

I don't get spinning--unless I drink alcohol--which I no longer even atempt.

Mostly I feel as if I might fall--off balance--or a falling sensation when I'm not falling--vertigo? The vertigo can happen anytime--even when sitting--the off balance thing is more often when standing/walking.

Sometimes I get an odd head rush when I stand--without pain mostly--but sometimes with pain lately--also comes with sort of a hand tight around the throat feeling--sometimes ears feel full like they need to pop--head feels as if it's going to explode from some sort of pressure.

Usually passes with deep breathing--but if not I KNOW I'm going down for the count. If I can sit down then get up more slowly it helps sometimes too.

Hope this info helps you!

There's that head pressure again! Just posted about that one Sandy. Seems many of us have that but we're not sure why. I am so sick of being dizzy (loopy, vertigo, off-balance - whatever!). I tell my husband all the time that if I could just get rid of this awful dizziness I could handle all the other crud that goes with POTS. No luck yet....thanks for the reply.

I'm glad you asked this question because it's still something I wonder about. My daughter has POTS and her main symptom is dizziness. She says that she feels like she's spinning. I guess what still bothers me about her dizziness is that it only goes away when lying down. She cannot sit up, stand and can barely walk because of the dizziness. None of the medications that have been tried have helped with the dizziness. I sure wish we could find a med that would help even a little bit with this!

I'll be very curious to hear from others. When she was first diagnosed, she went to an ENT and went thru lots and lots of tests and has no inner ear or vestibular problems.

Is anyone on Meclizine? (sp?) Has it helped the dizziness? Just wondering.
Brenda

POTS= Permanently Oscillating Tipsy Sailor

I think that about describes it.

Brenda -
I used to take antivert for my vertigo but I haven't for some time. It didn't do too much but now we realize the vertigo probably wasn't inner ear related and that was years before I was diagnosed with POTS. I haven't been on anything for it since I got POTS. The dizziness/vertigo has gotten much more pronounced the last few months. I see the Dr. next month and will see what he thinks - the hope is that if I can get my POTS symptoms reasonably under control that the dizziness will ease some. I really feel for your daughter - vertigo is the worst - it is a sickening feeling. My understanding is that meclizine and antivert are more beneficial for inner ear issues but I could be wrong. I don't know what's out there for those of us whose dizziness is autonomic in nature. But, I intend to find out!

I do worry (and I started a post about this recently as well) that sometimes my extreme dizziness is from salt loading. Salt is retained in our tissues and the first tissues it is retained in is our inner ear. This is why people with Menier's disease have to stay away from salt - it can cause vertigo. So, I'm still investigating that angle. I don't know what to do about it though because I pretty much need the salt. But, maybe I overdo the salt and that makes me worse? AAARRRRHHGHGHG - too many questions, not enough answers.

Good one sunflower power - I will take that one to the Dr.!

I've ONLY known about and done ANY salt loading in the past couple of weeks--have been dizzy for two years--or--actually--off and on my wholelife--just non-stop the past two years.

For what it's worth.

I too would love an answer for this one.

I am the poster child for dizziness. I have two seperate kinds of dizziness. The one type is my POTS dizziness where I feel like my heartrate is off I feel like I am going to faint. This dizziness is off and on. My other type of dizziness is pretty much constant. I HATE IT! It is a full feeling I have in my head all of the time. Sometimes I feel like I am moving or the room is moving. I have a hard time describing the exact feeling. Some weeks it is worse than others, but it is always there. Things like quick movements of my head and body really bother me. The thought of things like rollercoasters or basically anything that moves makes me sick. I was convinced that in addition to my POTS I had some type of vestibular disorder. I had several rounds of ear/balance tests to rule out other problems, but they were essentially normal. I even did vestibular therapy to see if I could retrain my brain in a sense. That didn't work. Infact all of the head movement etc. bothered me. When I saw Dr. Grubb when I was first diagnosed with POTS he noted that this is often noted as a complaint. Apparently this is more a "central" manifestation rather than "peripheral" where your blood pools in your legs etc.
I tried Antivert/Meclazine a long time ago and I never really found them helpful. The severity of my dizziness is past the meclazine phase. Things that have been helpful to me in the past are 1mg of Valium or .25mg of Clonipin as needed. I switched to the Clonipin because it has a longer duration than the Valium. At first, I felt a little out of it, but that medication feeling went away after a week or so.
I actually posed a similar message about a year ago to see if anyone else had this "type" of dizziness. A lot of people replied that they felt unbalanced, but they didn't have a constant "funny" feeling. There were a couple of people that had a more constant type of dizziness similar to mine. Every now and then I have a day where I am not dizzy and it is such a blessing! (I wasn't dizzy on my wedding day!) Somedays my patience/coping mechanisms for this dizziness are better than others.

I took my first yoga class about 2 years ago and the instructor started out by saying, "Imagine that you are floating on a raft." I just remember thinking why would anyone want to imagine that?? That is how I feel all day and I hate it! Someday this full, spinnning, foggy feeling in my head will go away. I am still banking on that!

I sometimes get lightheaded with some dizziness on standing. I've only fainted one time, and the dizziness I felt prior to passing out was the spinning type. Where the whole room and my bed were spinning. If I ever have that feeling again, I'll know to stay put!

These are all things that my daughter has been complaining about for the past two years. I just made a post with a breif history wanting to know more about what this is and what kind of tests are involved. I hope someone could help me.

Hi trebleclef,

Yes I get all forms of dizziness including vertigo. I also get that 'jolt' you are talking about, I think.

Mine is like the floor suddenly drops away from underneath me and I actually straighten my legs hard as a reflex action (as if ready to come to a stop)only to find, that of course, the floor has not fallen out from under my feet. It doesn't happen a lot but when it happens it's disconcerting. I also notice my heartrate has increased but am not sure if the jolt does that or if my heartrate was increasing before the 'jolt' and I'm just not registering it in my brain.

Hello trebleclef,

I am dizzy sitting here typing this. Feels like inside my head is still moving even though my head is still. I feel nauseous.

Over the last week or two, it has been brought on by the heat. Two minutes in a hot parked car last Saturday started my head spinning and has been rough ever since. Not the world spinning, but as if my brain has been spun around inside my skull, and I am left trying to balance afterward.

Sometimes I am just sitting and it happens. Then I cannot even move my eyes or it makes it worse.

All I can do is close my eyes sometimes and focus on calm, slow breathing. It doesn't fix the general dizzy feeling, but it makes the acute feeling subside a bit.

Sometimes it is brought on by standing up too soon, but mostly it is a normal state of being on a bad day.

I seem to have a few types of dizziness. When I am a lying down (and sometimes sitting) it seems the room is tilted.

When I move my head or eyes it's like my brain can't keep up and it makes me dizzy. Kind of like when a camera pans or films in slow motion in a movie. One time it was so bad I couldn't watch the traffic at the light, I had to look above it and try to focus real hard.

The other thing is my head feels funny all the time, like I am not really connected (to what, I don't know or know how to explain it). Maybe this is part of the brain fog? I sometimes feel like my head is buzzy.

The funny thing is when I lose my balance I don't feel a real dizziness. I think something just shuts off, me or my legs.

I hate it all. I do believe some of meds add to it, but I had a lot of it before meds, too.

The worst part of all of this is that I am going to be a grandmother in Sept. and I am so stressed, because I fear holding the baby. This is embarrassing too, because who will understand or not be fearful knowing I have a problem? My hubby is very understanding and said I will sit down and he will hand me the baby and we will be fine. (Stress adds to the dizzy issues.)

One time when I had what I think was true vertigo (room spinning) meclizine seemed to work. I only took it when it was real serious, because the drowsiness made it so I couldn't really function.

hugs

jan p,

How exciting about the upcoming Grandmother role!

I am a new Aunt. My dizziness is not so bad that I cannot hold him while standing, but I do not risk standing with him. My sister takes him from me first.

Also, my 88 year old Grandmother (his GG) is spry but you just can never be too careful. We always let her get situated sitting down and then hand her the baby to feed, hold or play with.

There are some people (like my husband) that don't have any desire to even hold the baby. And others, are wonderfully honest about what they are comfortable with. Some totally normal people are concerned about how they handle babies.

Visualize how you will handle the baby when you are feeling great. Imagine holding him to feed him, burp him, playing peek-a-boo under a blanket making him laugh. Don't leave any room for fear. It can be good or bad, depending on what you are focusing on, because what you focuse on expands!

So just go with the flow of the moment, be aware and honest of your own limitations, and when you feel good, and want to participate, show confidence - baby and new mom will pick up on it and appreciate it.

Good luck and have fun with it. What great moments you will have.