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Symptoms of POTS (Read 12903 times)
Britt
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Symptoms of POTS
03/12/15 at 14:19:01
 
Could someone explain the symptoms of POTS to me? What does it feel like?
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« Last Edit: 03/13/15 at 04:01:27 by Britt »  
 
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Re: Symptoms of POTS
Reply #1 - 03/15/15 at 16:03:27
 
Hey Britt.  There is more than one type of POTS, so symptoms and what it feels like can vary.  I will leave a couple of links so you can do some reading.  Here is Diagnostic Criteria for POTS: " The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension.1,2,3,4 In children and adolescents, a revised standard of a 40 bpm or more increase has recently been adopted.4,5"

http://www.dysautonomiainternational.org/page.php?ID=30

There are symptoms at that link as well.  

More on symptoms:

http://www.dinet.org/index.php/information-resources/pots-place/pots-symptoms

Hope this helps.
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PJP123
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Re: Symptoms of POTS
Reply #2 - 03/19/15 at 16:36:39
 
Hi Britt,

I have Dysautonomia and went for testing saying I thought I had POTS.  After tilt table test the electrophysiologist said I had neurocardiogenic syncope.  I've never passed out in my life.  I have chronic fatigue since I'm 15.

It feels like tunnelvision, like a horse with blinders on....only seeing what's in front of me.  I feel detached from my body.  I have tachycardia and always have to be sitting with my feet up.  Can't work, grocery shop, do anything normal.  I hate it.  

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Britt
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Re: Symptoms of POTS
Reply #3 - 03/21/15 at 07:48:16
 
I hate to self diagnose, and know that when we try and do that, we are usually wrong, but I'm starting to think that I may have POTS. But I feel exactly like you do and I am having a hard time living my life right now. I just want to feel normal again. Im having vertigo, more like an off balance feeling/equalibrium is off. The only relief I get from this is when I lay down. I am also having EXTREME anxiety and I don't know if the unnerving feeling of the vertigo is causing the anxiety, or vice versa or if they are two different things that started at the exact same time (which is the weird part) But I'm really struggling and don't know what to do.

If it is POTS, is there a way to get this balance/equalibrium problem under some control? I sure hope so. I can't stand it anymore. I can't do anything.

pjp123- I am so sorry Sad I know how you feel. how long have you had this dysautonomia?  Do you have good days bad days, or is it constant? Does it go in and out of remission? Do any medications or dietary changes help you at all? Do you ever get any relief?

I am requesting that my general practitioner refer me to be tested for this.
Is there any hope to live a normal life with POTS?
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« Last Edit: 03/21/15 at 13:28:54 by Britt »  
 
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Re: Symptoms of POTS
Reply #4 - 03/21/15 at 19:55:02
 
Hi again.  Anyone with Vertigo and other POTS may want to seriously consider being tested for Hyperadrenergic POTS.  Here is why....

"Norepinephrine is involved centrally in modulating the intensity of reactions to vestibular stimulation (Wood, 1979) and also affects adaptation. Both alpha (1 and 2) and beta receptors are found in the vestibular nucleus. "

http://www.dizziness-and-balance.com/treatment/drug/drugrx.html

Yes, sometimes self-diagnosing can be a real problem, but if I had not done this over the years, I am afraid I would still be labeled as A Hysterical Female who needs a hobby...or a Therapist...or something other than medical care.

I am going to try to attach a chart with the different types of POTS.  Hope it works.  Good luck!
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POTS_Chart.gif (20 KB | 292 )
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Re: Symptoms of POTS
Reply #5 - 03/21/15 at 20:01:10
 
Didn't work but it is at this link about half down the page...

http://www.bjmp.org/content/postural-orthostatic-tachycardia-syndrome-pots-evalu...
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POTS_Chart_001.gif (20 KB | 288 )
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Britt
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Re: Symptoms of POTS
Reply #6 - 03/22/15 at 05:38:39
 
Thanks mgc,
Have you found a regiment to help control the symtoms?

I can tell that a lot of my probelms are coming from my left ear. My hearing and balance test showed a 36% vestibuar weakness is my left ear. I have a crackling popping sound it that ear when I move my jaw, and it tends to plug up when I breath through my nose. Could this be part of POTS, or does it sound like something different? My head always feels "buzzy" even when I'm sleeping, though the off balance/vertigo whatever you want to call it, does get better when laying down. I also have EXTREME anxiety. I'm not sure if it's caused by the vertigo, or if it is a separate situation. I'm so confused and so scared. I just want some answers and some help. I can't keep going like this. I need some relief.  It's a living hell Cry. Can things get better? Or am I stuck like this? Ugh.
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Re: Symptoms of POTS
Reply #7 - 03/22/15 at 06:45:04
 
Britt, I take Clonidine which tricks the body into producing less Norepinphrine.  That helps reduce many symptoms. Vanderbilt only recommends two meds for H. POTS...Clonidine or Methyldopa.  I have tried Methyldopa at one point but was unable to take that. But yes, things can get better.

If you have Hyperadrenergic POTS with high levels of Norepinephrine, that could cause both Vertigo and Anxiety, and so it may not be that one of those is causing the other.  If you are adequately evaluated for H POTS, the testing could rule out a Pheo (a tumor which secretes Norepinephrine) at the same time.

Hang in there!
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Britt
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Re: Symptoms of POTS
Reply #8 - 03/22/15 at 09:41:15
 
The vertigo is so bad I can't even function. It's making me feel detached from everything. such a creepy feeling. I can't stand it. I just want to feel like myself again. I think the vertigo is causing the relentless anxiety. The anxiety feels like a constant surge of adrenaline/electricity going through my body. I'm stuck in the "flight" mode 24/7. Does this sound like POTS?

I just wish I could figure out how to be tested for POTS. I have an email into my general practitioner. Hope she'll work with me on this and take me seriously.

IF it is POTS, would it make sense that I have a "weakness" in my left ear? I also have earaches often, in both ears, but more in my left ear. Can this be part of POTS or does it sound like something else. I'm kind of questioning the results of the hearing and balance test. I just don't know anymore.

Is there any hope for me to come out of this?
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Re: Symptoms of POTS
Reply #9 - 03/22/15 at 10:26:29
 
This sounds like Hyperadrenergic POTS...

"The anxiety feels like a constant surge of adrenaline/electricity going through my body. I'm stuck in the "flight" mode 24/7. Does this sound like POTS?"

You can check your pulse at home yourself.  It is very easy.  If it increase more than 30 beats per minute when you stand, then that is an indication of POTS.

I have a problem with my left ear, but all indications are that it is a part of the Connective Tissue problem I have.  TMJ is common with Connective Tissue problems.

Where do you live?  There may be someone around that can do testing.
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Re: Symptoms of POTS
Reply #10 - 03/22/15 at 10:36:14
 
Hi mgc- thanks for responding. Sounds like I really need to look into this.

If it is POTS, is it possible for this feeling to go away or am I stuck like this forever? Is the kind of POTS you mentioned a more severe case of the disorder?  I've had these symptoms for 3 months straight. I'm so scared Embarrassed. Can medications help to treat this to live a somewhat normal life?
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« Last Edit: 03/22/15 at 11:39:37 by Britt »  
 
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Re: Symptoms of POTS
Reply #11 - 03/22/15 at 11:20:39
 
Britt, if you read an earlier post, you will see that meds do help, or have helped me anyway.  

It is not necessarily a more severe form, but since it is genetic, you are not likely to get rid of it.

Here is a link of Drs by state.  Maybe you can find someone on it.  http://www.dinet.org/index.php/physician-list?view=physicians

I don't know about your financial situation, but I have found the Omron 7 series wrist BP cuff to be very helpful to me.  If I am not feeling well, I put this on and track my BP and pulse for awhile.  It is worn on the wrist and will store readings so that you can share them with your Dr.  You can find them in stores such as WalMart.  Many of the wrist BP cuffs are not any good, but this one has been clinically validated.

Hope this helps.
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Re: Symptoms of POTS
Reply #12 - 03/23/15 at 03:19:59
 
Thanks mgc,
I had read the earleir posts, just looking for some reassurance I guess. I just want this constant vertigo/detached feeling and flight mode to let up some. It's been constant for over 3 months and is wearing me down Sad
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Re: Symptoms of POTS
Reply #13 - 03/23/15 at 04:28:14
 
I didn't read everyone's comments but I am answering your add'l questions.

I have vertigo/spinning episodes.  They last for about a week and then go away.  There are exercises you can do at home that I saw on you tube that helps with the vertigo.  I have tinnitus that is roaring.

There is nothing that helps POTS really.  I take blood pressure meds and vyvanse for the speed affect.  I'm at 10% normal human with speed.  I've had this since I'm 15.  It's not new, just finally diagnosed at 3 years ago on the advise of someone from this forum.  I thought it was POTS (still do), but Dr. doing testing said Neurocardiogenic Syncope).  My blood pressure shoots up 30 and then starts plummeting when standing up.

I don't work (couldn't if my life depended on it), even when I was younger I was the worst employee of all time.  Never did my work, so tired couldn't keep my head up.  It is the worst feeling in the world, I am sooo sick of living like this and think about throwing in the towel everyday.  I hang on because of my beloved children.  I can't do anything with them.  All I do is sit on the couch with a laptop.

I went to a mast cell specialist (worked at Brigham and Women's) and she hasn't really come up with what's my problem.  I was given every med for mast cell and still feel awful.

I feel it's vascular or blood related.

I know for a fact I felt better after antibiotics.

I'm seeing a gastrointerologist in Manhattan July 7 who deals with inborn errors of metabolism and gut microbes.  But have to wait til July!!!!!

I have 2 or 3 good days a month.  Can't find the rhyme or reason to it.

I do know I am extremely sensitive to meds/vitamins.

My older brother just started with symptoms of all this mast cell crap and went to emergency room 2x and was told it was nothing.  I said to him "Welcome to my world".

I printed out forms to fill for a study they are doing at Vanderbilt University for POTS.  If they accept you it's 3 days of testing!! YEAH!!!  They get it there, but I live in NY so it's no cheap trip.

I am not going to eat gluten.  Just to see if this helps.  

Did you do 23andMe genetic testing?  I would love to compare our genes, cause I always felt we where very similar in our symptoms.

Another thought I had too was with the Trich.  maybe we have a constant infection in our bloodstream?  How do you prove it?


















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Re: Symptoms of POTS
Reply #14 - 03/23/15 at 04:33:43
 
Also Britt,

Xanax helps.  It calms you down.  The other meds you take may be creating a serotonin syndrome type effect.  That happens to me when I take vitamins and then eat say beans.  I definitely have a nuclear internal reaction.  Not stomache, but nervous system.  I'm strung out, wired,  feel like in a panic.  All from eating something.  

Saturday I ate an egg, bacon and cheese on a roll (I know, why the heck did I eat such a thing).  Then I ate about 8 Hershey little chocolates.  Later in the day my right knuckles where bright yellow (almost went to the hospital with proof of something's not right) and then that night I awoke to hiccups.  When my dad had a stroke and we went to emergency room he was hiccuping and the doc said this is from stroke or central nervous system problems.
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