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Is Anyone Like Me?


ckteach
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Hi all-

I am new today, but I have read so much on this website already. Wondering if anyone might be living a parallel life as me.

I actually started with imbalance about 7 years ago, but that was it, for a very long time. I was diagnosed with BPPV (Benign Postionall Vertigo) and was given an Epley Maneuver at Johns Hopkins 3 years ago that helped. Doing pretty good after that but still days with shifts of imbalance throughout. I had occassional numbness and weakness in the limbs, trigeminal neuralgia (facial pain), and long-standing neck pain (bulging discs) throughout as well. I've been working full-time as a third grade teacher- good days and bad days- but was getting by. Oh, and I have Hashimotos and positive turned negative Mysathenia Gravis and Lupus. Lots of weird stuff...like most of you it seems.

Now it all seems to be escalating- imbalance very variable, palpitations, legs that always feel "prickly", and most of all to move my eyes or neck around too fast will absolutely cause imbalance- hard as a teacher when kids are moving around you constantly vying for your attention. Seems like they come at my from all sides :) . When standing still I need to hold a wall or lean...standing still is hard...I teach constantly moving all the time. Are there any other teachers out there dealing with this?

I saw a doc in Media, PA. Nice man and very attentive. Deals with autonomic disorders and says I don't have POTS, but definitely orthostatic intolerance. Is that progressive? He put me on fludrocortisone and potassium. I started yesterday. If I get side effects, should I know by now?

Just wondering if anyone is leading my life? I suspect many. THANKS!

Cindy

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Hi,

I do share the turning the head and eye movements to fast I get dizzy, off balance. I get this at times out of nowhere. Just get hit with dizziness. If this happens in the evening then I have to sleep up with pillows propped underneath me and can't move my head from side to side for usually about 9-10 hrs then it slowly gets better. If I get it during the day, it is really tough because of work and driving. I also suffer from palpitations, come and go.

We may not lead parellel lives but do share some symptoms. :) Good that you have a Dr. who is listening and working with you.

Welcome to the board.

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The head and eye movements that make you dizzy sounds like benign positional vertigo (something like that!) it's easily cured.

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The head and eye movements that make you dizzy sounds like benign positional vertigo (something like that!) it's easily cured.

It does sound like this, but just to add, I have very similar symptoms as well, but they have done everything to treat me for this from inner-ear dizziness medication to at home exercises for BPPV to the Epley manuever, to the Epley manuever six times within two weeks (thinking maybe since I was young, I had a lot more "crystals" than most to get put back in my inner-ear), to the Epley manuever three times a week along with doing it at home every day with assistance by my boyfriend whom the physical therapist trained to do it, and NONE OF IT helped!

So, I am still trying to figure it out...I don't remember which site I read this on, but I have read on a couple occassions that with POTS, a patient can experience "vertigo" on a regular basis (like that with BPPV), as well as get "dizziness" while lying down: both of these are true for me, so I've put on hold trying to treat this type of symptom and am focusing on the fainting/near-fainting and accompanying symptoms I get for now.

:)

Sarah

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