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August 2015 / Bronx/​Riverdale Family / Brooklyn Family / Long Island Family / Manhattan Family / Queens Family / Staten Island Family / Columnists / Teens / Healthy Living

Dealing with teens with Postural Orthostatic Tachycardia Syndrome

POTS

The teen disease you’ve probably never heard of

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Julia Swanson was a vivacious, smart, and fun-loving teen until, quite abruptly, she wasn’t. One day, she felt dizzy, nauseous, and her heart was racing before leaving for school. Thinking she was coming down with the flu, she brushed it off. After a few days, the flu never set in but Julia kept having these symptoms. Then she almost passed out in school after walking up the stairs.

Doctor after doctor could not identify why a healthy teen was experiencing such debilitating symptoms. One said it was simple tachycardia — an abnormally rapid heart rate — brought on by the stress of school. Another said it could be anxiety or panic disorder. Another said it was irritable bowel syndrome. Yet another said it was a hormonal imbalance. The last one said it was allergies. Julia became unable to walk very far, be active, concentrate, socialize, or do anything she would normally enjoy doing.

Every doctor she visited missed the diagnosis. It wasn’t until her mother, Elaine, took her to a psychiatrist to rule out any psychiatric conditions, but the doctor said he didn’t think she had any mental issues at all. In fact, she was reacting very normally for someone going through such terrifying physical experiences day in and day out. “She may have POTS,” he said. It was the first time that Elaine had heard the term before.

Postural Orthostatic Tachycardia Syndrome is a form of dysautonomia (when the autonomic nervous system malfunctions) that affects a large portion of teens. Symptoms may include heart palpitations, extreme fatigue, brain fog, nausea, headache, light-headedness, heat intolerance, exercise intolerance, insomnia, headaches, gastric problems, chronic pain, and near-fainting or full fainting spells, especially upon standing upright or walking. The symptoms are “severe enough to limit daily functioning” says Dr. Blair Grubb, a leading Postural Orthostatic Tachycardia Syndrome specialist in the country. Many compare the quality of life to that of having congestive heart failure.

There is no cure for it, but a variety of medications and lifestyle modifications help alleviate symptoms. The first primary therapy is extra fluids and extra salt to increase the blood volume, as most people with suffer from hypovolemia, or low blood volume, which increases their orthostatic intolerance.

Postural Orthostatic Tachycardia Syndrome may be diagnosed by doing a “poor man’s tilt test,” in which the heart rate increases of 30 or more beats per minute (or a rate that exceeds 120 beats per minute) that occurs within the first 10 minutes of standing. A formal tilt table test or advanced autonomic testing are typically performed for official diagnosis, although some doctors do not put their patients through it and are able diagnosis clinically. Many patients become very dizzy, nauseous, and many pass out while undergoing the test.

“To imagine POTS for yourself: number one, fast for 24 hours; number two, donate a pint of your blood; number three, go home and turn your thermostat up to 100 degrees Fahrenheit; number four, stand motionless. Enjoy the symptoms,” says Dr. Jeffrey Boris, a pediatric cardiologist at Children’s Hospital of Philadelphia.

The level of disability in patients varies, from those functioning with symptoms to those rendered bedridden. Many teens, in the prime of the life, cannot endure the simplest of things, like attend school, hang out with friends, or even go shopping, without experiencing immediate symptoms and possibly passing out. The recovery period is often a long and arduous one. When Postural Orthostatic Tachycardia Syndrome develops in adolescence, 20 percent of teens make a full recovery within 10 years. Recovery is typically dependent on the underlying cause, although in many cases, no identifiable cause is ever found. Some known causes are viral infections, Lyme disease, Ehlers-Danlos Syndrome, Chiari malformation, mast-cell activation disorders, mitochondrial disease, and tumors. Still many other causes exist.

Postural Orthostatic Tachycardia Syndrome is not a rare disease, but it is not widely know either, even by many physicians. The top hospitals in the country in the research and treatment are Mayo Clinic, Vanderbilt University Medical Center, and Cleveland Clinic. Postural Orthostatic Tachycardia Syndrome is treated usually by a cardiologist and a neurologist combined, but a full treatment team may also include a gastroenterologist, infectious disease doctor, allergist, rheumatologist, geneticist, and of course, a psychologist to help the patient learn to live with such a debilitating chronic condition.

Julia and her parents are still visiting specialists and determining which treatments might work best, but are hopeful now she has been finally diagnosed.

“At least we know what we are dealing with now,” says Elaine. “We are hopeful that new research will bring better treatments options and hopefully one day, a cure.”

To learn more about Postural Orthostatic Tachycardia Syndrome, watch “The Postural Orthostatic Tachycardia Syndrome” by Dr. Jeffrey Boris on YouTube.

Danielle Sullivan, a mom of three, has worked as a writer and editor in the parenting world for more than 10 years. Sullivan also writes about pets and parenting for Disney’s Babble.com. Find Sullivan on her blogs, Just Write Mom and Some Puppy To Love.

Resources for patients and their families:

• Dysautonomia International: A wonderful website and Facebook page, provides vital information, lists top doctors nationally and helps identify doctors in your area; www.dysautonomiainternational.org.

• DINET: A comprehensive website and organization aiming to spread awareness, doctor finder; www.dinet.org.

• DYNA: Brochures can be printed to explain Postural Orthostatic Tachycardia Syndrome to family, friends, schools, etc.

www.dynainc.org

• Standing Up To POTS: website with loads of information on living with Postural Orthostatic Tachycardia Syndrome, treatments, research, and advocacy, including a letter to bring to each doctor, titled “What Every Doctor Should Know About POTS.”

• POTSibilities Parents: Facebook group for parents of children with Postural Orthostatic Tachycardia Syndrome; invaluable information offered and vibrant community that helps each other.

• Facebook and Twitter: each has multiple groups and pages with vital information.

Updated 7:03 pm, October 28, 2016
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Reader feedback

Kelly says:
The article is a bit misleading - it isn't only teens who are diagnosed with POTS. In fact, half of the patients are adults.
Aug. 8, 2015, 7:59 pm
jane lockett says:
Great article, experiencing this with my 14 year old granddaughter now. It's been quite a journey getting to diagnosis.
Aug. 8, 2015, 8:05 pm
HBrake from Texas says:
My daughter was diagnosed with POTS. After 6 months of seeing specialists nothing seemed to work. I took her to a chiropractor/ kineseologist /nutritionist. He said her body can heal itself. He changed her diet (mostly paleo, no dairy, no sugar, no yeast. She can eat eggs), gave her probiotics, adrenal support supplements, and nutritional supplements (22 pills/drops a day) She started to feel less sickly within 2 weeks. He added Phytogen 2 times a day. Within 3 days she was able to see clearly again, the next day she could sit up, stand the next, and walk the next. A miracle considering she was bedridden for 6 months. We couldn't be happier that she will be able to attend school her senior year.
Aug. 8, 2015, 8:23 pm
Annette says:
This article is very misleading and needlessly dramatic. I know plenty of people who have this condition - it's not a disease.
Aug. 8, 2015, 11:48 pm
Maria RN from Connecticut says:
Annette...you know "plenty of people" who have this disease and it's not a disease?
Not too sure if you actually do know people who have Dysautonomia/POTS. IF you did, you WOULDN'T be so dismissive.
It's life altering and debilitating.
You are correct about 1 thing... It is not a disease, it is a Syndrome.
___________
Author of the Article:
Poor choice of Title.
Dysautonomia/POTS is not a "Teen Disease".
While it does affect many young people, it also afflicts adults.
Aug. 9, 2015, 12:24 am
Eleanor says:
Great article. I think it's focus on teenagers is due to this site being a parenting website. POTS impacts approximately 1 out of 100 teenagers and 1-3 million Americans yet not many people including physicians and other medical professionals know about the chronic illness which can be so frustrating for the families. Great way to raise awareness.
Aug. 9, 2015, 12:38 am
Shelly says:
This is a parenting magazine, the title is going to have teen in it, why get fixated on unnecessary things? This article was not saying that only teens get POTS it is saying that it affects LARGE numbers of teens. As a person who has dealt with POTS as well you guessed it, a TEEN, this article was extremely relative to my experience and I am sure it will be to many others who have actually dealt with it. The POTS community needs all the support they can get because it is an extremely hard thing to go through. Think before you comment mindlessly about something you clearly don't know anything about.
Aug. 9, 2015, 12:49 am
Caron says:
POTS is currently being associated, albeit annecdotally to the HPV vaccination. Several prominent and well respected scientists have published about this in peer reviewed medical journals and the European Medicines Agency have recently started a safety review into the development of POTS and Complex Regional Pain Syndrome (also connected to the autonomic nervous system) following HPV vaccination.

1 in 100 teens suffering with POTS seems excessive to me, especially coming from the UK. That must surely be almost an epidemic and with the extremely debilitating nature of the condition, it would surely warrant research funds being thrown at it.
Aug. 9, 2015, 1:25 am
Chris from Sydney says:
POTS = Babesiosis
Aug. 9, 2015, 1:58 am
Lucy from Portland says:
There are currently many research projects and funds being allocated for POTS research. Thank God for that. My son is severely debilitated and needs IV fluids monthly because he cannot hold down the extra water and electrolytes needed to even sit up. Annette, you must not really know anyone with POTS to leave such an ignorant comment.
Aug. 9, 2015, 9:56 am
Tracey from Marana says:
I was diagnosed through the Mayo clinic with POTS/Dysautonomia in my late 20's & lived with the condition for over 10years. It is a very debilitating condition, with the right combination of doctors and medication you can live a semi normal life, you just have to pay attention to your body, symptoms and know you limits.
Aug. 9, 2015, 10:04 am
Madeline Roe says:
This article could have been written about my granddaughter. It outlines exactly everything we went through in getting her diagosed. And, to top it off, Dr. Jeffrey Boris at CHOP in Philadelphia is her doctor!
Aug. 9, 2015, 10:54 am
CMS says:
Annette... Needlessly dramatic? Tell that to my niece that has been bedridden for 7 months and gets iv fluids for 8 hours a day, every day, and can't eat. Are you sure you know lots of people with POTS?!
Aug. 9, 2015, 11 am
Joy from Michigan says:
My daughter had this. The doctors could not diagnose and even placed on 2 asthma meds for 30days. It wasn't until we traveled to the bottom of our state (University of Michigan children's hospital) that they figured it out. It started around Thanksgiving 2014 and we seen UofM docs in January 2015. It was horrible for her and I am just glad there is a proper name and awareness of it.
I am sharing on me page too.
Aug. 9, 2015, 5:11 pm
Peggy says:
For anyone who is suffering these symptoms I suggest you get to a lyme literate MD. My granddaughter started experiencing these symptoms but tested neg for lyme. Lucky for her I had began experiencing these symptoms when I found a tic embedded in by back. After 7days on a 30 day script my symptoms disappeared. If I had not gone through what I did 6 mos before her symptoms began I probably would never have connected the dots. Don't waste your time on the typical lyme test because cases affecting the CNS don't show up. Lyme doc do other tests. My granddaughter was so lucky she was on two antibiotics for 5 months but recovered. The other issue is vaccines. Most people don't realize there is aluminum in them especially the HPV, but not the only one. These are two thing that can cause these CNS symptoms and well worth looking into.
Aug. 9, 2015, 6:57 pm
Lisa says:
Annette, do you have pots? It's not misleading or over dramatized. My daughter has it and I know what she lives with everyday.
Aug. 9, 2015, 7:31 pm
Erina says:
POTS is horrible enough, without all of the insensitive people here passing judgement and making negative remarks. If you have POTS, please ignore these people and don't take their comments personally. They really have no clue. I've had POTS for 10 year and my symptoms have ranged from debilitating, to absolutely and completely manageable. There really is hope for all of you who are struggling right now. Please, take care of your bodies as best you can. Find yourself a support system of good doctors and good friends. Find the strength, patience and coping mechanisms you need to help you get through the bad stretches, and never forget that you will have good days. You will even have great ones. Don't give up, and don't let negative people get to you. We POTSies all know the truth. Hugs.
Aug. 9, 2015, 10:31 pm
Donna McWilliams from Florida says:
I am an adult who was struck with this when I was 42 after two bouts of mononulclosis. Yes the diagnosis was difficult but there is a "cure". I participated in a research study at the Institute of Exercise and environmental medicine under Dr. Ben Levine. All but two people in the study recovered. It did involve water and salt intake but mainly exercise at a specific heart rate. I couldnt stand upright for more than 16 minutes without losing conciousness and within 3 weeks I was ok and after 6 weeks able to return to work full time as a flight attendant. How do you exercise laying down? Swimming or Recumbant bike! They you progress to regular bike then elliptical to walking and running. Ask your doctor to research this study! It worked!!!!
Aug. 10, 2015, 9:05 am
SMC from ohio says:
I suffered some similar symptoms in my late teens… I was first diagnosed with mitral valve prolapse and… Years later I was given a tilt table test and diagnosed with neurocardiogenic syncope. During the later years I was diagnosed with narcolepsy after a sleep test. I do respond well to being hydrated and having a well-balanced diet as well as exercise. I feel for teens who are suffering in this way. Ifeel for any age group who has debilitating things happening to them yet are in fairly good shape otherwise. I hope more information comes out about this.
Aug. 10, 2015, 6:02 pm
Tina from Florida says:
My daughter has suffered from this since she was a baby. They keep saying she will outgrow it but she is 14 and it is getting worse. It had effected her gastric to a point at a year old she had a feeding tube due too all the vomiting. When the tube was removed at age 4 1/2 she started passing out and having seizures. Doctors did test for epilepsy and determined she did not have it that her body seizes if you do not get her on the floor fast enough and get her legs up above the heart so her blood that pools to her legs can get back to her heart and brain. She is diagnosed with POTS, seizure disorder, autonomic dysfunction, and has mottling of the entire body when in a crisis flare. This was not diagnosed until she was 8-9 years old. It was one doctor after another till we found Dr brayan in Jacksonville fl. She also suffers from allergies and asthma and takes 10 medications a day to try and control all her medical conditions. She has gastopresis and gerd and was failure to thrive most of her life. It really takes a toll on her but she fights everyday to feel good. We did have to home school her in 5th grade but she went back to school in 6th grade. She was in the Chambridge program and made A/B honor roll all three years. She starts high school this year in the honors, the stress of Aice is too much, and has to go up two flights of stairs twice a day but will be able to use elevator if needed. She has had a rough summer but has gotten through it. We pray a lot for healing and God has heard us. We were able to get rid of the feeding tube and she is now thriving. She does not vomit anymore but is on Nausea meds daily. She takes medication for slow gastric motility and Florinef for POTS. It has been a very long road!!!
Aug. 11, 2015, 8:01 am
Alisha from South Jersey says:
Don't forget the boys! While it's true more girls have it than boys, there are plenty of guys suffering from this syndrome as well... My 17yr old son has had it for almost 3 yrs now, and our support group has several young men's families in it. Not diminishing the girls' experience, my 15 yr old daughter was diagnosed with it earlier this year as well, but the guys should be mentioned in this article.
Aug. 11, 2015, 8:01 am
Mary from Southern Maryland says:
I am 71 years old (today!) and was diagnosed with PO hypotension 15 years ago. My condition is not as severe as POTS, but I experience many of the same symptoms. Good nutrition, hydration, and some level of fitness help keep it in the background of my comorbidities, but it returns with a vengeance whenever I have an acute illness, an accident, or a flare of any other condition.
Hope all sufferers of POTS can achieve a level of stability and functionality while medical research finds preventive and restorative treatments. God bless you all!
Aug. 11, 2015, 1:24 pm
Mary from Southern Maryland says:
I am 71 years old (today!) and was diagnosed with PO hypotension 15 years ago. My condition is not as severe as POTS, but I experience many of the same symptoms. Good nutrition, hydration, and some level of fitness help keep it in the background of my comorbidities, but it returns with a vengeance whenever I have an acute illness, an accident, or a flare of any other condition.
Hope all sufferers of POTS can achieve a level of stability and functionality while medical research finds preventive and restorative treatments. God bless you all!
Aug. 11, 2015, 1:24 pm
Patti from Texas says:
I am so thankful that awareness is increasing about this debilitating and not-uncommon syndrome. My daughter went through years of increasing sypmtoms - gastro-intestinal problems, bouts of severe fatigue, hot flashes, muscle aches, migraines - until she could no longer attend school full time her junior year of high school. Thankfully, her school provided home tutors, and we found a pediatric neurologist in Sugar Land, TX that diagnosed her with POTS. After being on POTS medication (Florinef, Propanolol) along with Miralax & ADD meds for energy, she was able to make 4 days/week of school beginning her senior year. I kept researching and discovered the possible link between POTS and MCAD (mast cell activation disorder). She now sees an immunologist in Austin (we haven't been able to find an immunologist in Houston that is knowledgeable about POTS & MCAD). After adding the MCAD medication protocol, she was able to make full weeks of school, graduated from high school, and is going on to college out of state in a few weeks. She is cognizant of her physical limits and possible triggers (heat, too much exercise, exposure to certain allergens & foods). She knows she will have to push herself more than many of her classmates, but she is moving on with her life. I encourage every POTS patient and their parents not to give up. Keep researching, networking and asking questions until you find the doctors/specialists that can help you find the right solution for you or your child/teenager. Shake the dust off your feet from doctors that tell you it's all in your mind or offer no help, and keep looking for help. Be your own/your child's advocate. So many times, I was tempted to accept that this would be her life. I spent full days researching online. We saw handfuls of doctors and specialists, and my sweet daughter has had more labs done than any adult I know - numerous blood panels, MRI, tilt-table, EKG, ALCAT food sensitivity testing, allergy tests... But it has been worth it. God bless you all, and DON'T GIVE UP!
Aug. 12, 2015, 11:27 am
elizabeth from hartford, ct says:
I have had POTS for several years now. Before it was finally diagnosed and treated several doctors suggested it was the stress, angina, IBS and a variety of other things. POTS for me is treated with Renaxa, a heart medicine, always making sure am hydrated and keeping gatorade or something like it at hand. I even keep salt and sugar packs in my bag to throw into some liquid if I start having problems. i tried to get away with out the heart meds but the tachychardia and angina came back in two days. The thing that gets me is that it is often dismissed as a psychiatric issue if the primary or ER doc decides you are an emotional female. I have to be very careful when I travel but I can keep it under control with some vigilance. And Annette, like everyone else, glad your friends with POTS aren't so bad. They are lucky. You are ignorant.
Aug. 12, 2015, 3:53 pm
Francine from Pittsburgh says:
@Annette...I think a few people have given you enough of an ear beating, but your ignorance to this illness outrages parents or patients that deal with this on a daily basis. My daughter was an active 12 year old who worked hard in school, played on three basketball teams and dreamed of playing in college. She was with her friends all the time. Her childhood was robbed from her. Nine years later my heart still hurts And I would give my life for her to have a normal life. No one in our sea is really a specialist, so we travel to another state for her visits. We have flown across the country for procedures to help her function daily. Her dream was crushed of playing basketball in college, her friends drifted away and this child was left with sadness. And you say this isn't excessive? She has dealt with more adversity in her 21 years of life than most people deal with in a lifetime. My heart goes out to other people suffering from this illness. We have faith and God that this is his plan and we will continue to have faith and pray that people find it in their heart to feel empathy for the ill in this world.
Aug. 13, 2015, 7:49 am
Jill from New Jersey says:
Amen, Francine! You said it all so beautifully.
Aug. 13, 2015, 7:53 am
Nancy from OH says:
My daughter at 24 was diagnosed with POTS and neurogenic syncope. She has suffered with many of the symptoms described and done a lot of research to live with this syndrome. She thought she was dying.We finally got her to a cardiologist who diagnosed her. She never goes anywhere without her Gatorade or electrolytes tablets that she can put in water.She has a job that she is on her feet all day and has cut back her hours. Riding the exercise bike helps and compression leggings.It is a day to day struggle for her also.
Aug. 13, 2015, 10:02 am
Haley from KS says:
I was diagnosed with POTS when I was about 16. I am now 20 and pregnant and still dealing with it. I am curious if anyone may know if this can be passed down to my child?
Aug. 13, 2015, 4:33 pm
Lesia from AL says:
It is my prayer the people who speak in ignorance may enjoy the bliss in which they apparently live and never experience the devastation brought to our family with the onset of this syndrome, disease, whatever label you feel comfortable giving the grief that accompanies POTS. Grief for a lost childhood, lost adolescence, loss. Living the nightmare of POTS with my daughter from elementary school to present day, as a high school senior, is something you would never wish on your worst enemy. I prayed for years this suffering could be given to me, instead of watching my daughter go through this hell. She has fought valiantly, with strength and grace.
Aug. 14, 2015, 11:24 pm
Ola Adesokan from Tulsa, OK says:
I usually don't comment on anything, but I am so thankful to the author of this article for shedding light on this condition, for those who are quick to dismiss or say the article is misleading, I hope you don't have to walk in the shoes of anyone with this condition, I watched my sweet neigbour's kid go through this, was dismissed by so many doctors, until her parents took her to the Mayo clinic, this article in my opinion is to the point and right on, thank you for shedding some light on this condition, praying for a cure...
Aug. 15, 2015, 8:22 am
silvia says:
Check out fromwheelchairtorollerblades.com and dnrsystem.com, some People habe recovered crom POTS with DNRS
Aug. 28, 2015, 12:26 pm
Reina from Ohio says:
I echo the thoughts of Erina above. Some days I am dancing a jig and some I am bed ridden. I have had POTS for over 30 years. There are many causes, many types, many symptoms, many treatments. Everyone's experience is different. A bit of trial and error... Some things that I tried early on and did not have any luck with are now working for me. There is always HOPE. Especially for the teenagers.
Dec. 4, 2015, 2:56 am
Laurie from Oregon says:
Look for co-diagnoses. My 15 year old daughter has POTS and was just diagnosed with MALS. She is homebound, each day is a struggle. This video (https://vimeo.com/144396828) lead us to have her tested for MALS, and the result was conclusive. My daughter's celiac artery is being significantly restricted by the median arcuate ligament in her abdomen. If your POTS patient has stomach pain and nausea to the point that they cannot eat at times, you should ask your doctors to test for MALS, an ultrasound can confirm it - have them view the video. POTS is a set of symptoms that have a real underlying cause. MALS is just one possibility. Don't give up, don't stop asking questions or doing research, and definitely keep pushing for answers!

And don't worry about the 'Annettes' of the world, they will minimize the struggle because they don't understand what they cannot see. They are not worth the time.
Jan. 5, 2016, 8:42 pm
Todd from Illinois says:
My 13 year old daughter had the MALS surgery last year at the University of Chicago hospital. That helped with those symptoms. He POTS got worse in the past few months and she will get a feeding tube next week. Going to Mayo in a few months. She quit going to school and is confined to the couch due to nausea. This has been a nightmare and it has been getting worse. We go to a support group once a month which helps, but isn't encouraging. I don't know what this will be like in 4 or 5 years. We are dragging bottom already.
Feb. 10, 2016, 3:49 pm
Trisha from Virginia says:
Annette, you've clearly never lived through watching your very active teen go from playing sports and marching in the band, dancing, theater, etc, to needing a wheelchair if we do any significant walking. Crying because she can't live the life she used to. Watching her dreams of being in the military and having her career mapped out, ended abruptly. It's not needlessly dramatic. 1 in 100 teens will have this disorder, and many will find it absolutely debilitating. I personally know two teens and one adult. It's insulting to those whose lives have been forever altered by this to downplay it.
March 4, 2016, 1:09 am
Snapdragon from Texas says:
Doctors do not study nor understand POTS, and many other disease....my daughter contracted this unknown thing that could be genetic mutation, but labeled POTS.
Thank God for Cleveland Clinic Wellness caring for her with Chinese supplements, vitamins, and exercise. Fatigue can destroy you! AND....Annette should be so ashamed to voice this as drama! This is a very debillitating condition, disease, syndrome, with involvement in poor blood flow (pooling) to the heart leading to pulmonary embolism. I do believe vaccine is a cause, but will never get that through to Big Pharma.
March 15, 2016, 12:49 am
Chari says:
My daughter was diagnosed with Lown-Ganong-Levine Syndrome when she was 16. Which is a form of tachycardia and POT. She had a cardiac ablation. It helped some but not the POT. She can't take medications because her blood pressure is already too low. People don't believe it's real. She has faced many who poo poo it off and say "oh yeah my pressure is low also" She has learned to deal with it. She makes sure she is hydrated, keeps salted snacks with her at all times and moves slowly when changing position. He Doctor told her she can't drop her weight below 145lbs because her pressure can't withstand it. Hoping one day it gets figured out. We were told by the dr that at some point she may need a pacemaker because of the tachycardia.
March 20, 2016, 3:04 pm
Chari says:
My daughter was diagnosed with Lown-Ganong-Levine Syndrome when she was 16. Which is a form of tachycardia and POT. She had a cardiac ablation. It helped some but not the POT. She can't take medications because her blood pressure is already too low. People don't believe it's real. She has faced many who poo poo it off and say "oh yeah my pressure is low also" She has learned to deal with it. She makes sure she is hydrated, keeps salted snacks with her at all times and moves slowly when changing position. He Doctor told her she can't drop her weight below 145lbs because her pressure can't withstand it. Hoping one day it gets figured out. We were told by the dr that at some point she may need a pacemaker because of the tachycardia.
March 20, 2016, 3:04 pm
Debbie from Essex uk says:
Can I ask all you people who have this and may I say you have my utmost sympathies as I believed that my daughter may have been suffering from this lately, how many of you started experiencing problems AFTER having the HPV vaccine (Gardisil). Please do a time line from the date to experiencing problems. If the answer is yes. I would be most interested to know. Thanks. Big hug to you all.
March 24, 2016, 2:16 am
Dorothy from Scotland says:
It's quite clear that this term POTS is a pure fabrication by the pharmaceutical industry as a cover up for the symptoms caused by the HPV vaccine.
Just like the invention of Shaken Baby Syndrome to cover up for the damage caused by baby vaccinations.
March 24, 2016, 5:27 pm
Deb from Connecticut, USA says:
We found out with the sudden onset of symptoms at the age of 16 that my daughter had Chiari. After decompression surgery we found that her symptoms were not getting better. It was months later that we received a POTS diagnosis. The Chiari was still an issue and she underwent a second surgery in 8 months. We were in complete denial about the POTS. Two brain surgeries...she should get better now. She didn't. Someone sent me this article and reality set in. I've shared it now several times to Chiari parents facing the same symptoms. It's worth checking into because it's clear that many doctors don't know enough about this. I do not want any child to suffer or spend months being treated like they are faking like mine did.
June 28, 2016, 3:16 pm
Deb from Connecticut, USA says:
I'm bothered by those that think this is a "cover-up" or caused by the HPV vaccine. I guess they are assuming that all girls have had it? That is a pretty broad assumption. Many people worry about the side effects of that vaccine...which is why our daughters did not have it. It's why our doctors will not give it. It didn't stop POTS from effecting our children.
June 28, 2016, 3:20 pm
Jade says:
It took he doctors seven years to diagnose my sister, I myself have been displaying symptoms. It is totally hell for a teen to experience. Sports are limited to zero. I have to have support walking up the stairs. It is hard, but manageable.
Jan. 11, 8:54 pm
Sylvia from Illinoise says:
My daughter started having lots of problems in the 4th grade she was 10 years old she started all of a sudden to get dizzy and hot shaky and very pail yet blotch in the face all at the same time. I kept taking her to Dr's and was told it was hormones and at one point that I was not feeding her breakfasts fast enough even those it was only 7am. We are just now 3 years latter finding out and learning about pots. She is to take the tilt a table test in a few weeks however she has so many of the same signs and simotoms as what I have been reading. She used to be extreamly athletic and outgoing and now she barely can just get threw a day without crawling into bed. She is getting worse. Right now she is going to physical theripy twice a week and counseling once every other week. How i wish we had someone who knew and understood what we are dealing with and going thorough as a single mother seeing my baby like this and trying to work and care for all my children is just also more than I can bare thoe I am learning some have it so much harder ......my daughts life has completely changed not for the better. She has never kissed a boy or had the sicknesses that we know of that causes this it just seems to of came from no where.... Lots of love prayer and hope to the family's going through this.
May 13, 12:07 pm

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