Vertigo and Dysautonomia

[Ianankatie]

I have just got back from the doctors where I was discussing my new nutty symptoms and they recon that I have vertigo as well as VVS and POTS. They think that it has something to do with the bad black out I had at the weekend where I was drifting in and out of conciousness for sometime. Since then I have had funny feelings in my head and have been feeling faint when lay down as well as standing up. The doctor that I saw wasn't my usual and admitted she didn't really understand dysautonomia. She has suggested I check out potential links between POTS, VVS and Vertigo so if anyone has any input that would be great!

For now I have been perscribed Prochlorperazine Maleate to calm the nausea etc so I'll keep my fingers crossed for that. I'm off for more bloods tomorrow too.

Thanks all- hope your well

Katie x

[Traci]

I don't know if vertigo is a symptom of Pots, but I have had it in the past. One episode in the summer time.

It was very hot out and I was sitting in a position with my legs up. It felt like all my blood flow had gone to my head and neck area. When I got up to walk, the vertigo kicked in, I needed help to move. I lyed down flat for about an hour and it went away.

Traci

[Sophia3]

I have BPPV..a type of vertigo due to little tiny calcium deposits inside my ear. My endocrinologist performed a little test in a visit a couple yeers ago.

He had me lie on the exam table on my back, with my head over the side and a bit upside down, I think...I watched his finger as he moved it upward making my eyes track it, then he helped pull me up as I watched his finger and moved it some more. I had to stop due to SEVERE LIGHTEDNESS and VERTIGO.

My doctor grinned and said yep, you've got 'rocks in your head'...referring to the calcium bits. I was so GREEN I had to lie down and he said i even had ...what is the word, astygamus (sp?) where your eye shimmy back and forth during this little test of his.

All I know is I felt like I was on some disgusting amusement park ride...I could NEVER handle those either by the way. So he told me of some exercises to do.

They made me feel MUCH WORST at first. I could only do a couple minutes a day and then worked up to 15 minutes a day and they helped a LOT.

Good luck with this problem, it isn't fun. Also I am familiar with your sensation of feeling dizzy while lying down. I used to turn over in bed and the room would SPIN and I felt like I was on a boat and my bed was 'moving'. The exercises helpe with all this tremendously. I would ask your doctor about these types of exercises before doing them. At first they made me feel DIZZIER but that was due to training the ear to re-arrange the calcium deposits.

Meds only helped the nausea but for "many of us' the exercises are the fix.

Check with your doc. Best of luck.

this site and the Brandt-Daroff exercises is what helped me. Even has animation to show how to do them properly

http://www.tchain.com/otoneurology/disorders/bppv/bppv.html

[Ianankatie]

Thanks, that is such a good way to discribe it- just lilke sea sickness. I have just been looking through potential causes of vertigo online and read about the 'rocks' as you were saying but also that vertigo can be caused by poor circulation and lack of blood to that part of your head- surely this would make sence as it came on after a bad black out where my brain was lacking blood. Does anyone know anything about this???

[Sophia3]

I am sorry I forgot to add the vertigo is just an added "Bonus" to my case of pots and the improvement of one doesn't mean the improvement of the other but that is my case.

ALSO there are some theories that people get these calcium deposits when bedridden. I have spent MUCH of the last severeal years in a supine position and wondered if some of this was self induced but I didn't let myself get guilty over this as I push myself to be upright when I can.

Let me know if you decide to try the exercises and if they help. Somebody else tried them for a few weeks and thought she noticed improvement.

[yogini]

Do you feel like the room is spinning? My understanding is that vertigo means spinning. After a few months of POTS I suddenly developed severe dizziness. I am not sure how to describe it, but it was more like the ground was moving up and down than spinning. At first, my doctors insisted it could not be related to POTS. I went through extensive inner ear testing. I was diagnosed with probable vestibular neuritis and went through 3 months of vestibular rehab last year. My symptoms were almost gone, and then they totally came back when I reduced one of my meds. My doctors then agreed that it was the POTS that was causing the dizziness after all. There is some overlap in symptoms between POTS and balance disorders, and in my case, it turned out to be just POTS. This is mentioned on Chris Calder's website too. I would still definitely get tested if your doctor thinks that you have an inner ear condition.

-Rita

[lthomas521]

Vertigo can be part of a migraine attack.

[morgan617]

Vertigo is the feeling that you or the room are spinning. Dizziness is the off balance kind of sea sick feeling. They are very different.

I've had meneires for many years but also had bppv, which I got rehab for. I have a lot of dizziness with my OI, but it is very different from my meneires attacks, when the room is spinning at about a million miles an hour and moving up and down. Because I have it in both ears, they compete with each other to compensate and end up making me feel worse.

The testing for bppv is very easy, not fun, but easy and rehab really helps. My understanding is that it's causes are aging, trauma to the head. (anyone that's fainted and cracked their head would qualify for this) or for no apparent reason, so don't beat yourself up Sophia. There are any number of reasons it happens.

There are also viruses that unfortunately attack the inner ear. These can last up to 6 weeks.

And it is true, that circulation to the inner ear is tepid at best, so if the circulation is interuppted in anyway, the ears are going to get the hit. My ENT had me on niacin for awhile, because for some people, it helps open up those little vessels and improves circulation. It did give me a pounding headache. I do not reccommend anything without a doctor's okay.

I think both vertigo and dizziness come from the same place, the inner ear, or irritation of the 8th cranial nerve, but they are treated a little differently and can signify different things.

Since I obviously can not take diuretics, the next line is valium. I take 5 mgs a day in 1 mg doses. It helps a great deal. I still have attacks, but in between I usually feel better. morgan

[Susan Lake]

I suffer from periods of vertigo and I also have pots. I think there must be a link between the two but I do not know. My vertigo did start after a long period of bed rest due to a pregnancy. I feel horribe when it hits like the room is spinning or I feel lopsided, pulling to my right side. The exercises I was given did help a bit in the long run but are not fun to do when you feel so bad and so dizzy. I found that after having a doctors manuever called the Epley I felt worse for several days. The idea here is to losen up the " ear rocks" that sit in the semicicular canals and reposition them. I feel it is very necessary to then sleep upright for 2-3 nights after so that there is enough time for them to fall where they need to.

I also experience severe nausea with this which of course is never fun. I will have symptoms for days or weeks and then they will be gone for a month or so. I find that every other month the feelings trickle back, sometimes not very severe.

I hope you can find some answers and please find some comfort that you are not alone when going thru all this.

Take care of yourself and I hope you feel better soon.

Susan

[Sophia3]

Susan

If I had had the Epley done, I would've HAD to have been driven home but then I would've made such reservations. I read where one should sleep up in a recliner...but what if one doesn't have one? Though I realize the importance of that.

That's also why its' So IMPORTANT to get the timeline down on the B-D exercises...30 seconds in each position and then sit up in between.

Though those exercises when one is already nauseated, is like being FORCED to ride an amusement park ride against one's will. And then I drink ginger tea afterwards or do something else for the nausea. THAT can be a rough time but I now know it will help get thru the spells in time.

Oh, and I SO GET the feeling like the room is tilted to the right and I am walking on a diagonol floor. SCAREY since that stuff sounds and feels like a stroke.

I feel like I am LEANING left via a magnetic pull. I have to grab furniture and walls to get to the bathroom on these days.

Good luck to all who have this vertigo junk.

[Ianankatie]

Thanks everyone! What ever is wrong with me the tablets I got yesterday are amazing! I have been up and about today without too much dizziness etc and I am even managing to puppysit for my mums 8 week old pup- not an easy task for someone suffering major room spin! I think the main reason they put my syptoms down to vertigo is the ear to ear sensation I keep getting and the effects on my vision- as well as the room spin and nausea when lay down! I have rang my cardio to get checked out properly and had blood tests done today so hopefully things will work out well.

For anybody who has had a sudden onset of vertigo- did it get better????

Thanks again!

Katie x

[morgan617]

There are many people who get better, so don't give up hope! morgan