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Pots And Deconditioning


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I went for my monthly check up with my PCP and we talked about all the symptoms I am still having even with being on all my meds. She is now wondering how much is deconditioning and how much is still POTS. My largest concern is all the dizziness and motion sickness I still have. She is sending me to physical therapy for Eplee treatment. She said it has to do with vertigo. My PCP is great and explains things in a funny way sometimes. She said all people have "rocks" in their heads. Most peoples "rocks" know where down is, but mine don't. I have to retrain my "rocks" to feel better. Kind of like being on the swings at the carnival or fair and getting off dizzy. I get extremly car sick if I'm not in the front seat looking straight forwrd. If I turn to look at someone in the back seat, I get dizzy, sick to my stomach and a severe headache. This also happens when I close my eyes in the shower. She also suggested swim goggles in the shower if I don't want to pass out or fall out of the shower.

Has anyone else had these problems and if so what do you do for it?

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Hi! Haven't had the vertigo type thing that you describe, but during neurological exams if I close my eyes, I can't stay standing up- I just flop. It's not dizziness though- I don't know how to describe it. More like I slip into a blackhole or something.

I think it is definitely possible to get deconditioning side effects. I am forcing myself at the moment to sit bolt upright in the library at least 3 days a week- without reclining at all during working hours, and I'm discovering that the more I do it, the more I feel able to do it, which is really good.

Have you thought about getting a set of pedals that you could use in the house? That would strengthen your calf muscles without you having to worry about balance when on a bike, or having to even get to a gym. I had a set of these in the hospital one time when my muscles had begun to waste as I'd been lying down so long- they were really good. I'm tempted to try and get some again now as I'm not up to riding a bike just yet.

As for the shower problem- could you get a chair for the shower, would that help? I can't stand up in the shower, and my shower at college has a chair. The one at home though is a shoewr over the bath, but an Occupationla Therapist at home gave me a plastic board that goes across the bath and which I can sit on if I'm too wobbly to stand. It does help me hugely. It's such a simple idea- have a look online, I'm sure it can't cost that much if you have to pay for it (luckily mine was free)

Good luck, let us know how you get on!

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Howdy,

my rocks are all wonky as well!!

I had vertigo last year for fifteen weeks and was told that because the infection was severe i've been left with a balance disorder on my right side, so if i close my eyes everything spins, have to be careful moving my head around and stuff i keep falling over!

Not a happy bunny about this! the ENT said that if it doesn't fix itself in about 6 months then i'll be stuck like this woo hoo!

any suggestions of what i can do to get rid of it would be appreciated!

becks x x x

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A couple years ago I was sent to vestibular rehab to get my "rocks" in place again....I made no improvement. It seemed to just make me dizzier but I know some people who swear by those "canolith repositioning" methods that align your ear rocks.

Good luck!!

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I did some Brandt Daroff exercises from a BPPV site that my doctor told me about.

He dx me with rocks in the head though a MENIERE's SPECIALIST said I did not..he also said I was normal though the balance tests made me EXTREMELY ILL.

The exercises you can do on the bed helped me a lot though INITIALLY made my nausea and vertigo worse, which CAN be normal but in the end, I built up a tolerance and it helped. Good luck.

The Epley needs a doc to assist.

Here is a link..ask your doc.

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

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I also had lots of dizziness when I first got POTS. My cardio insisted his was separate from my POTS. I went to an inner ear dr, did 3 months of vestibular rehab. The rehab really helped me, but when dizziness came back, we figured out it was POTS and not ear.

I would do the exercises your dr prescribes, because it did help me. I still use some of the techniques when I'm dizzy, like staring hard at an object to make me stop feeling I like I'm moving. Some people here do have ear problems in addition to POTS - but POTS itself can cause severe dizziness w/o having an ear problem. I am not even sure it's deconditioning, because I am dizzy right now during my crash but in good shape from exercising all last year....for me it's part of the lightheadedness.

-Rita

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I have had the Epley manuever done before for the same problem. I did not have a good experience with it. I was feeling okay the day I went for a check up with my neurologist but he put those goggles on and said my "ear rocks" were floating and he wanted to reposition me to settle them. I ended up feeling just horrible when he was done. I felt that way for about 2 weeks after. He explained that it was like that while the ear rocks were still finding their way to settle. I was instructed to sleep upright for 5-7 days after the procedure as to not distrupt the process..... I know it has worked for MANY, I am just not one who felt that I really benefited. When I was having a good day I went in and then paid for it weeks after.

Good Luck to you, I hope your experience is much different.

Susan

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Nolie,

You described me!! ;)

My husband makes fun of me cause I can't turn around in the seat to check on the kids, and I can't read while the car is moving. You don't want me in the back seat!!

I get pretty dizzy in the shower as well. I havn't fainted in all this though, even though I feel like I'm going to.

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The crystals actually dislodge from a little gel pad they are on...usually from a trauma of some sort, or not....but they tend to settle in the semicircular canal in your ear and when you move in certain positions, they move in the canal and throw everything off.

The reason for the maneuvers is to get them back on the gel pad they belong on and then keep them there. That's why you sleep fairly upright for several days. it can make you feel pretty crummy, but typically, if they can get the crystals back where they belong, people feel much better....you just have to be prepared for the symptoms....I never ate before I went....I have meneires too, which is an autoimmune inner ear disorder, so I quit after awhile, as it flared that up too and it's harder to manage....

good luck sweetie....they can diagnose this easily, if you have rocks, it's just not a lot of fun.....

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