does anyone have vertigo?

[spapanik]

Hi, I am new here. My name is Stacie and I was just recently diagnosed with POTS. For three years I have had continuous vertigo. I don't get nauseated i just feel like Im going to loose consciousness. No one has been able to tell me what is going on and I have had every known test in the book. Everythings been normal. Now they are telling me that I have dysautanomia or POTS and I am just wondering if this is really what I have. From what I have researched, most of the people with POTS don't have vertigo, and if they do it is not their main symptom. I have it 24/7. Just in different severity. I usually do pretty good throughout the summer(although Im never normal and have the vertigo still) but in the winter the vertigo always flares up. This winter I have been in bed for four months. When I lay down, the room spins, but when I stand up, it's so much worse that I have to lay back down. I guess a good reason why they diagnosed me with POTS is when I stand up, my heart rate goes from 120-150. Do any of you have vertigo as your main symptom?

Along with the vertigo, I have experienced weird gravity sensations. It feels like I'm going against gravity when I stand up - it feels like gravity is pushing me down. I also get the opposite sometimes where it feels like I'm free-falling. I just wondered if anyone else feels these same things.

Thanks!

Stacie

[Jacquie802]

Hi,

First off welcome to the board! Have you had any ear tests done (ENG, Rotational Chair Testing, etc.) or at the very least been to an otolaryngologist (ear, nose, and throat doctor)?? I suffered from vertigo for months and I had an abnormal ENG test, and also abnormal posturography test. However, my rotational chair test came back normal so the docs figure my POTS is what caused the vertigo. It's not as bad as it has been in the past, but I def. know how you feel.

Jacquie

[Be Still]

Hello and welcome.

Your HR sounds POTSy. Have you had a tilt?

I assume you have ruled out Meniere's?

Are you on salt or salt-free?

If you are in a colder climate, something that gets worse in the winter needs to consider dehydration (as a factor in severity, not cause.)

I'm sorry, but that sounds awful to have to deal with. I hope doctors can help spin down your world. Continue to investigate the Dysautonomia connection. Everyone here is glad to help, if we can.

[morgan617]

I have meneirs, so can totally sympathize. Like the others, have you had any inner ear testing done? Most people get dizzy, but dizziness is different than true vertigo, where either the room is spinning around you, or you are spinning in the room.

It would be a good idea to get checked out by an ent. good luck. morgan

[Sophia3]

Hi Stacey

I went thru lots of testing and had violent reactions to the caloric testing (flushing water in your ears!!) but was determined to have problems with blood flow to brainstem, as many of us with this illness do have.

But I can related. I did some exercises the doc gave me (forget the name) but there is also the Brandt-Daroff exercises. I had them bookmarked elsewhere but can't access them right now!!

Does your dizzieness get worse on your period...that time could trigger full blow vertigo for me (Feel like I am walking on a sharp diagonal floor!!)

[yogini]

Hi Stacie,

Dizziness was my WORST problem since getting POTS. I never had vertigo (spinning), but had the same exact gravity sensations that you mention. It was so bad I could barely walk. I used to go to work and dread having to go to the bathroom or getting my lunch from the cafeteria. I was first diagnosed with POTS, but the dizziness didn't start until a few months later. My doctors misdiagnosed me with an ear condition on top of the POTS. I went through three months of vestibular rehab, and when the symptoms came back, my doctors figured it out. The rehab exercises (like Sophia is talking about) did help, and it also helped to practice walking. I used to walk back and forth up and down the hall and gradually things have gotten a lot better.

I really think that there is a strong connection between balance issues and POTS. I went to the Mayo Clinic and asked about it, and nobody seemed to know much. I don't think the researchers have focused in this area much. I am y sure mine is related to POTS, because I was a totally healthy person and everything started to go crazy once I got POTS.

Have you had any ear testing?

-Rita

[Lulu]

Hi, Stacie and welcome to the board!

Ugh! It must be horrid to be spinning all the time! You poor dear!

I get vertigo from time to time, just assumed it was part of POTS because it is absolutely related to how I lose or come close to losing consciousness, & I definitely have the weird gravity thing. To me, it feels like the core of my being is being pulled to the other side of the earth. Other times I feel like I'm a tethered balloon and then I just s-l-i-p a-w-a-y right up into/out of space (this sometimes comes before or with the vertigo, but not always). It's a strange sensation, either way, to be sure.

I've been told that people faint at different speeds by Dr. G. (! that was a revelation) and that I have a very slow faint. I don't always go all the way out, though. And sometimes the syncope is accompanied by these sensations, but not always. To me, it is a relief if I actually lose consciousness, because being able to hear & sense the world but unable to respond or help myself due to being near-unconscious....it's excruciating.

Maybe you are having a slow faint all the time? It seems extreme, but I have been known to go thru this dozens of times/day when ill. I agree with the others there seems to be a link & like other posters, I would recommend going to a really good ENT doc, if you haven't already. Good luck & I hope you feel better!

Peace and light,

Lulu

[Ianankatie]

Hi Stacey

I had verigo as my main symptom of pots and vasovagal syncope and it was awful so i can completely sympathise. I found Prochlorperazine worked really well as you could take it 3 times daily or as needed. After just a few weeks it almost completely disapeared and now I only suffer when my pots/vvs is really bad. I too had a whole host of atology (sp) testing to check the causes of the vertigo. Nothing came of it and it was put down to the pots. Be careful if you have the caloric testing (flushing water through the ears). Mine was inconclusive but I have had really painful swolen ears since December where they damaged my ear canal doing the test. If you have it done leave it a week then get your ears checked. They didnt tel me to get checked at the time and my infection wasnt found for 3 months until it got bad. Hope it doesnt come to that. I know vertigo is awful but dont worry, it can just pass I'll keep my fingers crossed for you!

Take care

Luv Katie

[spapanik]

Hi Stacey

I had verigo as my main symptom of pots and vasovagal syncope and it was awful so i can completely sympathise. I found Prochlorperazine worked really well as you could take it 3 times daily or as needed. After just a few weeks it almost completely disapeared and now I only suffer when my pots/vvs is really bad. I too had a whole host of atology (sp) testing to check the causes of the vertigo. Nothing came of it and it was put down to the pots. Be careful if you have the caloric testing (flushing water through the ears). Mine was inconclusive but I have had really painful swolen ears since December where they damaged my ear canal doing the test. If you have it done leave it a week then get your ears checked. They didnt tel me to get checked at the time and my infection wasnt found for 3 months until it got bad. Hope it doesnt come to that. I know vertigo is awful but dont worry, it can just pass I'll keep my fingers crossed for you!

Take care

Luv Katie

Hi Katie-

Thank you for responding to me. When you had the vertigo, did you get nauseaded? Is Prochlorperazine for nausea? Yeah I could only get through one ear of the caloric testing. I had such horrible vertigo when they did the ear I couldn't go through with the other one. that was like 3 years ago. They said my ears were normal though. Thats horrible you got an infection.

Thank you for your help

Stacie

[Sophia3]

Stacie

I went thru that horrible Caloric testing a few months ago. I got very ill from the cold water in each ear. The girl asked if I wanted to continue and I rested a bit and said yes. THEN they did the warm water that "felt hot" as I was warned but I felt like my brain would spin off. The nausea/vertigo was so horrible they stopped it at that point.

I wish the docs had to go thru that test. all these tests and I was "normal" though had a "violent REACTION" to the caloric test????

I had slight hearing loss, normal for folks my age. but I was williing to go thru ANYTHING to get some answers....so I am glad I did it. I was told they do not do it on pts over 65 because it is so hard and draining. Well, i was worn out FOR DAYS from it but had been warned about it before hand by a friend with Meniere's.

When I have the vertigo/dizzieness/or blacking out or graying of vision, I had to stay in bed. Otherwise I 'push to do things' which may just include making myself stand to brush and floss teeth!! and do one load of laundry to cleaning the house. I just have learned to "listen to my body" and learn when I can push.

I take many breaks to get thru cleaning or light gardening in the summer. Lying down with FEET over head helps to push my stamina to get things done. HOWEVER if one has dizzieness/vertigo etc, you really CAN NOT function...when the house feels like it's moving or slanted, pushing is impossible..and I can't do motion sickness meds.

I just trigger mild vertigo bending over the sink to wash my hair just now. I also just took half a does of the red Sudafed and a xanax. It will help with house cleaning i need to do! Xanax helps the tachy cardio trigger of the Sudafed.

I hope you learn how to cope with the dizzieness Stacy...the low BP or the low cerebral flow to the brain with NORMAL BP can wreac havoc on what our "brainstem interprets and reacts" so the neuro ENT told me.

I do do cawthorne exercises when things flare up...I need to do those later today..I need to drive in a bit after the medicine kicks in.

[kmpower]

Hi. Sounds miserable.

Chiropractic neurologists practically specialize in assessing and treating vertigo if you are open to that. Most of them film your eyes with an infrared camera while you are looking into the room or in the dark, rotating slowly on a chair, fixating on a target, and more.

If the room is apparently moving in one direction, then your eyes are trying to drift in the opposite direction. Different parts of the ear mechanism, brainstem, cerebellum and brain could be involved in doing that. If they have ruled out serious pathology, then often individualized treatments, eye/brain rehab maneuvers may be given.

Have you figured out why it is worse in winter? Is it the dryness (sinus?) or the barometric changes (fluid movements?), etc.

Good luck. Vertigo is another one of those terrible problems where "gee, but you look fine".

OLL