Postural orthostatic tachycardia syndrome

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LupusMomma
Regular Member


Date Joined Aug 2011
Total Posts : 74
   Posted 3/16/2012 6:44 PM (GMT -6)   
Hello. I am having many symptoms of Postural orthostatic tachycardia syndrome (POTS syndrome) and was wondering if anyone in this forum has ever heard of this or have this condition. I am very confused and nervous about what is happening to me and would love to get some feedback. Thank you for your time and information. :-)

LupusMomma

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12406
   Posted 3/16/2012 7:47 PM (GMT -6)   
I've heard of it only once before- on an episode of "House", sorry I don't know any more.
Joy

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5758
   Posted 3/16/2012 11:04 PM (GMT -6)   
I'm a little familiar with it, they say that literally hundreds of conditions can contribute to this.

Have you been diagnosed by a Dr? What are they suggesting for treatment?

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 3/17/2012 11:48 AM (GMT -6)   
I have many symptoms of POTS...Orthostatic Hypotension has been confirmed....have you had any luck talking to the docs about it?
*Lupie Britt*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:Plaquenil-200mg 2x/day, Prednisone-1mgs taper 1mg every 4 wks, Keppra-750mg 2x/day, Daily Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day, Protonix 40mg 1x/day,Vit. D 800IU's 1x/day, Lyrica 50mgs 1x/day, Flonase 50mcg 2 sprays each 1x/day.

*Lord_Walters_Lady*

LupusMomma
Regular Member


Date Joined Aug 2011
Total Posts : 74
   Posted 3/17/2012 2:26 PM (GMT -6)   
Lynnwood

I have not been formally diagnosed but that is what they are leaning towards. So far, they have put me on atenlol to help control the high heart rate and blood pressure but they are still waiting for the results of the heart monitor before doing anything else. I still have two and a half weeks left on that.

Lord_Walters_Lady

The cardiologist is harder to deal with about this but the neurologist and rhuem. both think that is what it is. The cardio guy says that it is a possibility but wants the results of the monitor first. I have almost all of the symptoms and it is very frightening and life altering since I can no longer drive or go anywhere for an extended period of time. If you don't mind me asking...what happened to you for you to think POTS?

Thank you so much for replying...I am feeling a little lost.

LupusMomma

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 3/20/2012 8:46 AM (GMT -6)   
Hey LupusMomma,

I have been to the cardiologist numerous times and had a monitor etc too but it didn't show anything. So whatever palpitations and everything I was feeling didn't show up or maybe it was the hospital(I like in a small town and sometimes local drs don't seem to know what they're doing!...Just like my lupus wasn't diagnosed here either they kept saying I was fine). Anyhow, I have Orthostatic Hypotension and I get dizzy when I stand up a lot, it can be a mild dizziness/burning in my head to severe where i'm starting to black out and everything gets so weak i fall over, plus I have the livedo reticularis, raynauds, IBS, occasional low blood sugars, a low blood pressure to start with(101/60 usually)and sometimes out of nowhere I will get shakey and feel my heart rate quicken and it will stay like that for hours and then go away again. Before I was on a lot of meds for lupus it would go anywhere from 80-200(the higher end if i was moving). The other day before I went to the ER before I left the house it was at 100 but by the time I got to the ER my bp was elevated to 135/80 and my heart rate was 75.
I was put through a tilt table test because I also passed out randomly in the mall one day for no reason. They don't know why and the tilt table test was negative. So sometimes my body works and sometimes it doesn't, I don't know. This is a really odd and difficult thing to deal with.
I have also had 3 seizures in my lifetime which they will not connect with lupus. I do not know why but everything I have points to CNS lupus because I have the seizures(CNS), the POTS syndrome stuff(ANS)and the neuropathy that has spread(PNS)...SO....it's an ongoing process since 2008 and I hope that you get answers quicker than I have. I've probably had more happen with this than I can think of right now(sorry brain fog!)but I do have a website you can look at if you haven't already....

http://www.ninds.nih.gov/disorders/postural_tachycardia_syndrome/postural_tachycardia_syndrome.htm

P.S. I was in the ER the other night due to symptoms and for the same thing back in 2009 only it was worse...check out the post and see if they are symptoms you have had as well! Good luck and God Bless

-Brittanee
*Lupie Britt*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:Plaquenil-200mg 2x/day, Prednisone-1mgs taper 1mg every 4 wks, Keppra-750mg 2x/day, Daily Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day, Protonix 40mg 1x/day,Vit. D 800IU's 1x/day, Lyrica 50mgs 1x/day, Flonase 50mcg 2 sprays each 1x/day.

*Lord_Walters_Lady*

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 3/20/2012 8:53 AM (GMT -6)   
I meant to also say that the symptoms in 2009 resembled a mini-stroke...brain fog never fails me ehh...but they never did any scans or anything so i won't ever know i guess....tried to say it was Angioedema then and an allergic reaction the other night...makes no sense...they don't know so they make it up....Keep us posted!
*Lupie Britt*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:Plaquenil-200mg 2x/day, Prednisone-1mgs taper 1mg every 4 wks, Keppra-750mg 2x/day, Daily Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day, Protonix 40mg 1x/day,Vit. D 800IU's 1x/day, Lyrica 50mgs 1x/day, Flonase 50mcg 2 sprays each 1x/day.

*Lord_Walters_Lady*

coco_az
New Member


Date Joined Apr 2012
Total Posts : 3
   Posted 4/1/2012 6:59 PM (GMT -6)   
I have POTS and if you want a good resource or user forum go to DINET.ORG. POTS can be genetic and can be triggered by autoimmune diseases and viruses or trama. Basically, they try to treat the symptoms and the rootcause may never be determined for sure. There are 5 tests for dysautonomia including the tilt table test. The degree of symptoms can be minor to totally disabled and bedridden. My 22 yr old daughter was diagnosed 5 years ago and she is on disability not being able to work or drive. I have always had exercise intolerance and now they dermined that no matter how much salt or fluids intake per day, I cannot maintain blood volume and more and have a port for daily hydration. Dehydration is a key to my POTS crashes and medications for symptoms never made an inpact. The only reason I can drive and work is with IV hydration. Midrodine, compression stockings, floronef,ect and all had no real impact. Same is happening with my daughter and her young age is preventing getting a port for long term hydration.

There are so few neurologists and cardiologists around that truly understand pots. Each Dr my daughter and I have visited gets all excited to treat POTS until the time they try every medication with no true results, then they give up. I was lucky enough to go to the Mayo clinic in Phoenix and get Dr Goodman. Now my daughter and I both finally found a Dr who is knowledgeable and a expert on the condition. I find that I can trigger a pots crash with just missing my daily hydration 2 days and once you crash it an take up to a week or more to get on your feet again. I was told to exercise sitting or laying down. It is really hard to build any muscle when exercises are so limited and your days are suppose to be spent working and upright. There are so many groupings of symptoms to be labeled with dysautonomia. You can pass the tilt table, but fail the 4 other tests. One test does not tell you if you have POTS or if it is neurological, or endocrine or cardiology caused. Being informed is the only way to manage POTS because it is your symptoms that you are trying to managed. It can never becured, it can go into remmission, get better or worse.

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 4/5/2012 12:46 AM (GMT -6)   
If I remember right from the med books, I think its a form of Dysautonomia and something about the blood flow causing tachycardia (fast heart rate, aka bpm)

Although what is your base bpm? Don't let it get too high, IE 170s without medical obversation.
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~
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