Postural orthostatic tachycardia syndrome

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LupusMomma
Regular Member


Date Joined Aug 2011
Total Posts : 74
   Posted 3/16/2012 8:14 PM (GMT -6)   
Hello. I have been having almost all of the symptoms of Postural orthostatic tachycardia syndrome and wondered if anyone in this forum has ever heard of this or actually has this disorder. I am scared and confused about what is happening to me, so any information would be great. I have lupus and had a tilt table test that was "positive". Thank you for reading. :-)

LupusMomma

Shinji
Regular Member


Date Joined Mar 2012
Total Posts : 122
   Posted 3/16/2012 11:15 PM (GMT -6)   
Hi Lupus Momma, I was just getting ready to log into the Lyme Disease discussion when I saw your question under heart conditions. I was dx with POTS, though did not have tilt table test. I just figured my autonomic nervous system wasn't working right, I was given meds for nerves and try to have salt. Recently my doctor invited me to reconsider my symptoms...he said he thought it was lyme disease because of the neurological symptoms. I said what about POTS. He said, yes but what caused the POTS?
What are you symptoms and what do you think started it?

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 3/17/2012 11:09 AM (GMT -6)   
Lupus Momma,
 
I have actually seen the topic of POTS brought up in many forums.  There is not a lot here in this forum but a few threads have mentioned it.  You can always use our search feature to find other threads on POTS.
 
Here is a link to an article that explains POTS fairly well.
 
 
Let us know how you are doing.
 
Kindly,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.

www.healingwell.com

"Life is not about waiting for the storms to pass...
It's about learning how to dance in the rain."~ Vivian Greene

LupusMomma
Regular Member


Date Joined Aug 2011
Total Posts : 74
   Posted 3/17/2012 2:35 PM (GMT -6)   
Shinji

I have been passing out, lightheaded, rapid pulse rate, high blood pressure that drops suddenly very low, hands shaking, feel weak after an episode, confusion, bad memory, short of breath, and tunnel vision right before I pass out, and just really tired all of the time. Usually happens shortly after getting up and really hard to take a shower without having problems. Usually feel better if I can lay down. I had all of this stuff happen about two years ago (minus the passing out and tunnel vision) but they diagnosed me with high blood pressure and never gave it a second thought. I have found that it is worse when I am having a flare of my lupus symptoms...which is happening right now. Not sure if that is the cause but it has been listed as a cause in some literature that I read.

Kitt

Thank you for the link. I have been there and it is very informative. I was just looking for personal insights and how people coped with this. I will do a search.

LupusMomma

Shinji
Regular Member


Date Joined Mar 2012
Total Posts : 122
   Posted 3/18/2012 11:51 AM (GMT -6)   
Lupus seems like a valid cause for you POTS. I don't have Lupus.
Sometimes when I have one of these flares there is tremendous pressure in my neck, head and spine and I must lay down. The problem is once I give into the down position the up position is much harder. So, I usally force myself to do as much as I can in an upright position while I can. Fortunately, I am not a fainter, just a swayer. It sounds scary to have to worry about passing out. Do you do this often?
Fatigue is a killer. I don't have the answer to that one at all.
I hope you can find a forum that helps you. If you do let me know. I don't have it as severely as you do, but I can relate.

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 4/1/2012 8:47 PM (GMT -6)   
I don't have a lot of time right now to respond in the way that I would like to :) - but I have had POTS since 2003... diagnosed through MANY tests, finding the right doctor, a positive tilt table test and so forth. My cardiologist currently manages my care for this....

Anyway, one day - when I have a moment - I'm going to write up my experiences w/ POTS for the forum.... But, if you have an specific questions or want to talk more - please feel free to e-mail me (click on my username, and my e-mail is there).

Take good care :) --Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

madamebrianne
Regular Member


Date Joined Oct 2012
Total Posts : 37
   Posted 10/11/2012 10:07 PM (GMT -6)   
I have POTS and am willing to speak with anyone who would like to chat. :)

Thanks, and look forward to hearing from you! Take care.

zachsmom
Regular Member


Date Joined Dec 2013
Total Posts : 24
   Posted 12/20/2013 9:05 PM (GMT -6)   
Hi everyone, my now 19 1/2 yr old son was officially diagnosed with POTS in October 2013. He had been having the symptoms for months however. In April of 2013 he was bitten by a tick. Three days later on April 15th, I had him in the pediatrician's office. He was prescribed ONE 200 mg doxycycline pill.
A few weeks later he was noticeably more lethargic and experiencing air hunger, clutching his chest saying he couldn't get deep enough breaths of air. By July 2013 he had a full-blown severe panic attack, complete with numb feelings in hands and feet, fingers locked/frozen in fear?, racing heartbeat, thought he was going to die. It was horrible. The ER doctor had no interest when told he was bitten by a tick in April (my husband told me to tell the ER doctor).

Follow-up appointment with the pediatrician revealed good vitals, nothing of note, although we did explain his symptoms. The doctor said he had depression and anxiety, needed antidepressants and a therapist. We left that appointment very disappointed, my son felt like no one was listening.

By August 2013 my son's symptoms were non-stop. Racing heartbeat going from laying to sitting, sitting to standing, standing to walking. This caused him to not want to move too much for fear his heart would literally burst. He begged me to change his college classes to online (from on-campus). He was afraid of what walking around campus and up and down stairs would do to him. He was constantly feeling like he would die from whatever was going on with his heart.

Throughout the month of September 2013 my son struggled with more panic attacks and tried to not complain, tried to talk himself into trying to stay calm, etc. He couldn't deny though the cardiac pain and pressure he was feeling, the constant air hunger and the rapid racing heartbeat along with how HARD his heart was literally pumping. There were times I felt it and it literally brought me to tears. I began to feel as hopeless about the situation as my son did.

By October 9, 2013, I wrote an email to his pediatrician begging her for a referral to a cardiologist. She got him an appointment right away, and I was grateful for that. But the cardiologist was useless. We explained my son's symptoms of POTS to a T, and she literally did NOT LISTEN AT ALL. She already had her mind made up that my son simply had depression and anxiety and that he had "other issues". She did an EKG and she said he did not have heart block, nor did he have any other issues otherwise detected by an EKG. My son looked so defeated when we left that appointment. He felt like nobody believed him and that because of all this time being wasted trying to get answers, that he may literally lose his life because of it. He constantly felt like he was living on borrowed time, that he could drop dead at any moment :(

By the way, lyme titers ordered by the pediatrician in early October 2013 all came back negative - both the ELISA and Western Blot.

November 14, 2013, I finally got my son in to see a LLMD. He believed us about the POTS, took his pulse going from sitting to standing and saw that he did indeed have POTS. The LLMD put him immediately on antibiotics (first three days were probiotics only): minocycline 100mg 2x/daily, 1 bactrim tablet 2x/daily & plaquenil 200mg 2x/daily. He is also taking 5000iu vitamin D daily, & two NAC supplements daily to protect his liver. He also told him to adhere to a diet of no soy, no wheat, no gluten & no sugar.

27 days later on December 20, 2013, my son's POTS symptoms have almost totally resolved. No longer experiencing racing heartbeat upon standing! He is still however experiencing shortness of breath, and deep, heavy sighing to get more air. The follow-up appointment today was good. We saw the LLMD's Nurse Practitioner. She said he is to continue abx for one more month, and is hopeful his breathing issues will clear up by then. After that he is to continue with herbal supplements to support his immune system.
Son under-treated for tick bite April 15, 2013
Severe Panic Attack mid-July 2013
Full-blown Postural Orthostatic Tachycardia Syndrome (POTS) by Oct 8, 2013
Finally see LLMD on Nov 15, 2013
POTS symptoms mostly resolved by Dec 20, 2013
Still dealing with shortness of breath

opugirl
Forum Moderator


Date Joined Nov 2012
Total Posts : 3922
   Posted 12/21/2013 6:23 PM (GMT -6)   
Your post about the pots triggered me to look at it. I had POTS and I had lyme. I was also negative for all the tests. Went to an LLMD, got diagnosed, took an APPROPRIATE amount of antibiotics and now I'm all better. No pots and no other symptoms. Although it took me longer then 1 month for it to go away. Glad your son is feeling better!

I am also on herbs and they helped immensely.
Forum Moderator

July 2007 - Deer tick bite w/ physician confirmed EM Rash - given 10 days of Doxy
October 2012 - My world gets rocked January 2013 - My world turns upside down
March 2013 - Igenex +, start treatment with LLMD, LLND, and herbalist
August 2013- Finished all abx, continuing with herbs and homeopathy, Feeling good!

zachsmom
Regular Member


Date Joined Dec 2013
Total Posts : 24
   Posted 12/22/2013 12:07 AM (GMT -6)   
Thank you opugirl!

I'm very hopeful the rest of my son's symptoms will resolve upon completion of treatment. Your story is a success story that gives me hope! I am definitely a believer in that herbal supplements will be essential to his maintaining his health beyond his antibiotic treatment. Every day I thank God for helping us find the LLMD who is helping restore my son's health. This is why I made it a point to post his story. .. if it helps even one person to recognize the symptoms of what they are going through, it will have been well worth the effort.
Son under-treated for tick bite April 15, 2013
Severe Panic Attack mid-July 2013
Full-blown Postural Orthostatic Tachycardia Syndrome (POTS) by Oct 8, 2013
Finally see LLMD on Nov 15, 2013
POTS symptoms mostly resolved by Dec 20, 2013
Still dealing with shortness of breath

littlewing75
Regular Member


Date Joined Mar 2014
Total Posts : 207
   Posted 3/8/2014 9:37 AM (GMT -6)   
hi - hoping anyone from this thread is still around. i started having dizziness/panick attacks about 2 1/2 years ago - i also had a tick bite, but did not get tested for lymes until a year later. and the test was negative.

however i've always wondered if it could be related. i have had almost every test under the sun - i did have a positive tilt table and was told this is called POTS and to just stay hydrated and eat more salt. still have horrible dizziness and panic attacks, heart pounding and rapid heartbeat, feel like i will pass out. not sure if it anxiety or something else. what is an LLMD?

does anyone have any advice about what else i can do to feel better?

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 3/8/2014 7:38 PM (GMT -6)   
 
Hello and welcome to the Heart Forum.
 
I am going to post info on POTS first:
 

Postural orthostatic tachycardia syndrome (POTS) is a condition characterized by an inappropriate elevation in heart rate when standing up. People who have POTS experience symptoms - most often lightheadedness and palpitations - whenever they are upright. Their symptoms can vary in severity from quite mild to incapacitating.

In addition to the rapid heart rate, they can also have a drop in their blood pressure when standing. Up to 40% of people with POTS will have at least one episode of syncope (passing out).

POTS is a disorder of young people. Most who have this condition are between 14 and 45 years of age and are otherwise healthy. Women are four to five times more likely to develop POTS than men. A propensity for POTS appears to be present in some families.

POTS is most likely a form of dysautonomia, a family of conditions caused by an imbalance in the autonomic nervous system - the part of the nervous system that manages the "unconscious" bodily functions, such as digestion, breathing and heart rate. When the autonomic nervous system is out of balance, a whole host of symptoms can result, involving the cardiovascular system, breathing, the digestive system, the muscles and the skin.

POTS is a heterogeneous (meaning it has many causes) group of disorders with similar clinical manifestations. POTS itself is not a disease; it is simply a cluster of symptoms that are frequently seen together. This is why the 'S' in POTS stands for "Syndrome." Since POTS is not a disease, it is fair to say that POTS is caused by something else. However, figuring out what is causing the symptoms of POTS in each patient can be very difficult, and in many cases, patients and their doctors will not be able to determine the precise underlying cause. When doctors cannot pinpoint the underlying cause of a patient's POTS, it may be called Primary or Idiopathic POTS.  Idiopathic simply means "of an unknown origin."

While researchers are still working to identify the root causes and pathology of POTS, there are several underlying diseases and conditions that are known to cause or be associated with POTS or POTS like symptoms in some patients. This is a partial list:
Autoimmune Diseases such as Autoimmune Autonomic Neuropathy, Diabetes, Sjogren's Syndrome, Sarcoidosis and Lupus.

Infections such as Mononucleosis, Epstein Barr Virus, Lyme Disease, extra-pulmonary Mycoplasma pneumonia and Hepatitis C

Multiple Sclerosis

Toxicity from alcoholism, chemotherapy and heavy metal poisoning.

This list is not all inclusive. Reference: Richard N. Fogoros, M.D.

LLMD stands for Lyme Literate Medical Doctor .

If you have concerns and questions re Lymes you may find better info in the Lymes Forum.

I wish you peace,

Kitt

  


~~Kitt~~
Moderator: Anxiety/Panic
and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

Lott
New Member


Date Joined Mar 2014
Total Posts : 1
   Posted 3/25/2014 9:27 AM (GMT -6)   
My daughter was diagnosed with POTS almost 2 years ago after going to multiple doctors. It was a disorder we had never heard of yet since her diagnosis, about 7 other kids in her school have been diagnosed with the same disorder. Someone suggested to us that there might be some environmental cause for that many kids in the same school to suddenly become stricken with this. I saw in an earlier post something about heavy metal poisoning and wandered if anyone knew anything specific about this possibility.

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 3/25/2014 12:57 PM (GMT -6)   
Lott,
 
Welcome to HealingWell.  This link may help you understand POTS better.  It is a very complex group of symptoms.
 
 
I wish you the best.
 
Kitt
~~Kitt~~
Moderator: Anxiety/Panic
and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

Scaredhusband
New Member


Date Joined Jan 2015
Total Posts : 1
   Posted 1/25/2015 8:45 PM (GMT -6)   
I'm A scared husband my wife was diagnosed with this condition she has the "tachycardia" symptoms. She was diagnosed in 2009 from the flu shot so the doctors believe, and since then she has lost her jobs, her feeling of self worth, hope, her will to live. She goes for days on end not being able to eat, and to move.

She was a nurse and a paramedic in Ontario, she was my hero helping everyone. This darn condition, syndrome, disease or what ever they call it sucks the life out of people and it doesn't seem to stop. So until we find the light at the end of the tunnel for anyone that has the severe case that is like the following I wish you hope and strength.

Ok so she: try's to drink as much fluids as she can, but sometimes vomits it all up every time she consumes anything for days, weeks sometimes months, the hospital put a "pic line" in and gave her food through a tube for days. She also has to take over 14 different pills just to hope that her symptoms don't beat her. Her last bought made her lose 60 lbs in just over 2 weeks. We constantly go in and out of the hospital for fluids she IV wise she can get them in. So then we were ok for about a week. Then she start throwing up again and created a tiny tear inside her stomach that she described as a knife digging into her, (more drugs). Her heart rate is as high as 98 beats per minute standing her blood pressure can go up or down depending on what ever POTS says it will be, it can be as high as 188/120 or as low as 99/40. We just got married and we made sure that we had stand by chairs just in case she couldn't stand. There's just so much more that she battles with, but I still love her and will be right by her side always, I won't give up and either will she. Again good luck to everyone at beating this thing.

lymedisease1
Regular Member


Date Joined Jan 2015
Total Posts : 132
   Posted 2/10/2015 2:43 AM (GMT -6)   
Shinji said...
Hi Lupus Momma, I was just getting ready to log into the Lyme Disease discussion when I saw your question under heart conditions. I was dx with POTS, though did not have tilt table test. I just figured my autonomic nervous system wasn't working right, I was given meds for nerves and try to have salt. Recently my doctor invited me to reconsider my symptoms...he said he thought it was lyme disease because of the neurological symptoms. I said what about POTS. He said, yes but what caused the POTS?
What are you symptoms and what do you think started it?
lyme can cause POTS symptoms, thats why he thought you had lyme disease. You should get tested for it
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