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Hello guys, just joined. I have been diagnosed a month ago with orthostatic intolerance, however, whenever I have not felt good I check my BP and it is normal. My question is the following: Do you get balance problems like swaying when you are upright? This seems like a weird symptom to me, and i have not seen many posts discussing this. I started having this on and off two months ago, but for the past week it has been constant, only changing its severity. Before this, I had more classic symptoms for a year and a half like dizziness (no problems with balance though), brain fog, and so on which got worse when standing. Thanks

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Yes - I have had balance issues where I actually feel like Falling all of a sudden. Sometimes I even just start leaning to the left side, walking into walls etc, as if a giant magnet is pulling me to the left. In the past these symptoms were attributed to my POTS. Recently they have gotten worse, I saw a neurologist for it, had MRI. CTA etc --- all normal. I take meclizine for bad days, it helps some. Next I guess I will have to go to ENT to rule out vertigo from inner ear. However - the dizzispells and balance issues were my first symptoms of POTS, long before I started with full-blown symptoms. So I wonder if it is not from the orthostatic intolerance, especially since often it develops after standing up or in the shower? 

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Hi, i haven’t been diagnosed with POTS or OI (pretty sure I have one or the other though)  & I do have balance issues. I walk into walls, door frames, countertops, almost anything a lot. I find it’s much worse when I have headaches (which has been pretty frequent lately, going on day 9) I’ve also found my depth perception seems to be slightly off sometimes too. I miss steps or trip a lot. I drop things I am trying to put down on a counter or table etc. full disclosure: I’ve always been known as a clumsy person. 

I hope you find some relief soon!

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I have it too.  Developed post full-blown POTS.  Some of mine my PT thinks is peripheral nerve issues.  That makes sense given I have SFN, so part of my PT is work on a Bosu boards.  

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8 hours ago, Pistol said:

Yes - I have had balance issues where I actually feel like Falling all of a sudden. Sometimes I even just start leaning to the left side, walking into walls etc, as if a giant magnet is pulling me to the left. In the past these symptoms were attributed to my POTS. Recently they have gotten worse, I saw a neurologist for it, had MRI. CTA etc --- all normal. I take meclizine for bad days, it helps some. Next I guess I will have to go to ENT to rule out vertigo from inner ear. However - the dizzispells and balance issues were my first symptoms of POTS, long before I started with full-blown symptoms. So I wonder if it is not from the orthostatic intolerance, especially since often it develops after standing up or in the shower? 

Hey Pistol, thank you for your response! This condition is so weird, sometimes I wonder if there isn´t anything else going on. Actually, I started having all of my symptoms after the flu or some kind of virus, and my first complaint were brain fog and ear pain. I had an ear surgery due to a middle ear problem that I developed after that. However, my ENT says that should not affect balance, and now my ears seem fine, so I don´t know anymore. Still, I had a positive TTT, so maybe it is all coming from dysautonomia, after all. I suggest you have your ears checked, but I´m not sure if there is a way to know for sure if your issues are from OI or not because, from what I understand, some inner ear diagnoses are based on exclusion. I hope you find relief and recover your balance. 

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2 hours ago, p8d said:

I have it too.  Developed post full-blown POTS.  Some of mine my PT thinks is peripheral nerve issues.  That makes sense given I have SFN, so part of my PT is work on a Bosu boards.  

Thank you for responding. Do you have any noticeable symptoms from SFN? I don´t know a lot about that condition. Also, how did you develop full blown POTS? Did you have any trigger that you remember? I hope you start regaining your balance with your PT. Good luck.

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5 hours ago, Shannoncr said:

Hi, i haven’t been diagnosed with POTS or OI (pretty sure I have one or the other though)  & I do have balance issues. I walk into walls, door frames, countertops, almost anything a lot. I find it’s much worse when I have headaches (which has been pretty frequent lately, going on day 9) I’ve also found my depth perception seems to be slightly off sometimes too. I miss steps or trip a lot. I drop things I am trying to put down on a counter or table etc. full disclosure: I’ve always been known as a clumsy person. 

I hope you find some relief soon!

Hey Shannon, I hope you get your symptoms checked soon. Have you had any tests that rule out other conditions? Hope you get relief.

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When I stand still I sway back and forth. Just for kicks and totally sober I did a field sobriety test, you know, walk the line. I totally failed. I also failed years ago before I started on any meds, so it isn't the meds. Sometimes my eyes dilate for no reason. If I get pulled over, I will totally fail that test but would pass the breath and blood tests. I'm hoping my handicapped parking placard will lend some credence to my argument that my issues are medical but not enough to keep me from driving. There is no way I can ride a bike or climb on a ladder any more.

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Yes.  I did get some relief working with a physical therapist.  She came up with several exercises for me to do that were tailored to my needs.  

I think I should start doing them again, actually, because my balance is still bad on some days.

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Balance issues can be part of orthostatic intolerance and/or could indicate low B12.  I would ask for this to be checked.  Low B12 can lead to nerve damage which could be healed with treatment.  I was recently diagnosed with low B12 after having a POTS flare up--after 10 years of minimal symptoms.

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I too had low B-12 and caused balance issues big time!  It was difficult at first because the doctors first seem to think it was caused by a stroke, but as time went on and my constant request the did blood test and found my B-12 extremely low.  I was given a few shots and put on a daily supplement and nearly a year later I was near normal again.  I could not even look up walking as I would fall down.  If I was heading out to my workshop 150' from the house and I would close my eyes I would end up back it the house doing a full clock wise circle.  Mine was caused by a combination of H-EDS and being a diabetic too.  I was on Metformin to help my diabetes which is known to lower the B-12, it seems like I should have been tested for B-12 on occasion during my diabetes treatment.  Anyway, nearly back to normal!

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I normally have some sense of dizziness at most times, but balance stays intact.  When my BP and pulse plummet, then my balance is shot, but I'm also likely to be passing out within a few seconds of that.  

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As you can see by my username, dizziness/vertigo is a huge problem.  My daughters both developed vertigo when they were 12-1/2 and 13.  They are 22 and almost 20 now and still have it 24/7, 365 days of the year.  They've done the Epley maneuver, had some inner ear evals (but no videonystagmography or rotational chair, just barbaric!).  My daughter's PT commented the other day about it and said he would have a hunch it's autonomic because it never stops.  Off balance is a problem, dropping things, walking into walls.  My oldest daughter is like a pole magnet!  We'll be out somewhere (most likely a doctor's appt) and if there is a pole somewhere, her body heads right to it.  I have to grab her arm to pull her around it!  It's crazy! 

Kim- The girls' autonomic PA has commented a few times regarding their dilated pupils.  She said that's an indicator that dysautonomia is still happening.  My youngest didn't need her eyes dilated at her eye appointment because they were so big already, he could see right in!  The field sobriety test!  Yes, my oldest daughter would fail that in a heartbeat, my youngest (even with her newly developed dystonia (as long as she's taken her meds)) could totally walk a straight line. 

When the girls' POTS is worse, tachycardia, they have vertigo and lightheadedness.  Make sure you eat plenty of salt.  We actually figured out the girls had POTS due to the fact the youngest one was eating ramen noodles by the case.  She had horrible gastroparesis and that was all she could eat.  Her vertigo and dizziness, two different things, was improving!  So, hang in there, eat your salt, take your vertigo meds when you need them!

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Hey guys, I am on day 10 of taking Lexapro as recommended by my doctor. I don´t know if it is because of this, but my balance has gotten much better than it was the past days! I hope it continues to improve. I still have lots of other symptoms though. I really hope you all find a treatment that can make you feel better. Thank you for all of your replies.  

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I am glad you are feeling better. Lexapro ususally takes up to 6 weeks to really kick in but it IS very helpful, I take it too. 

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On 5/17/2018 at 12:14 PM, Pistol said:

 walking into walls etc, as if a giant magnet is pulling me to the left.

This is exactly the words I used, except I seem to be pulled to the right, I had to lean hard against the wall to feel I had counter-balanced the pull enough, though logic told me it couldn't possibly be so.

I also liken it to the feeling when you have been spun around and around and you want to fall to one side, its like this except without the dizzy spinning part, I just feel that pull to the right.

On a different but possibly related subject, I also found a way to describe how my head feels. You know the feeling when you get an injection in your gums when you go to the dentist, that numbness that spreads from the injection site?, well I always feel like I have had a really big injection in the back of my neck, sometimes the numbness travels as far as my eyes.

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20 hours ago, Pistol said:

I am glad you are feeling better. Lexapro ususally takes up to 6 weeks to really kick in but it IS very helpful, I take it too. 

Ugh.. all of those types of meds they tried for my dysautonomia ended up in bad ways for me.   Most often with my head in the toilet vomiting violently within 30-60 minutes of taking it and dry heaves for the next hour or so, and feeling absolutely terrible for the next day

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Yes I had extreme swaying - feeling like the ground was moving or I was walking on a rowboat- when I was very sick.  This symptom is mostly gone but I get it occasionally when I have a flare up.  

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