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Editor’s Note: The following was written by Christine Lairmore of Lake Arrowhead, California.
Hayley Lairmore with Shadow
When our daughter, Hayley, turned 14 on March 8, 2009, we took her to Disneyland to celebrate. After a day full of riding rides and eating junk food, she woke up vomiting and kept vomiting all night long and all the next day. Our previously healthy daughter never stopped vomiting after that day, sometimes vomiting up to 12 times daily. Severe abdominal pain followed about a week later. I started by taking her to her regular pediatrician, who thought it was a flu and advised minimal eating, increase fluids, etc… just wait it out. It never got any better.
Update: Read more about Hayley’s story on ABCNEWS.com, and see videos of Mrs. Lairmore telling the story of their journey on the Mayo Clinic YouTube Channel.
Watching our daughter suffering and not getting better, we took her to our local ER, fearing dehydration or something more serious. They ran some tests, suspecting food allergies (mainly Celiac Disease), did some x-rays of her abdomen, and ultimately sent us home with a prescription for Zantac. Days later, the blood test came back positive for Celiac Disease. We promptly put her on a gluten free diet, but there was no improvement to her condition.
Next we sought help through a G.I. specialist at Loma Linda Medical Center. He at first thought she was just constipated and prescribed a treatment plan for that. When she continued to worsen over the next week, he then performed an endoscopy – which showed mild gastritis and duodenitis and, more importantly, it ruled out Celiac disease. However, this doctor kept saying she was fine, nothing was wrong, and there was no more testing or medicine he could do. I told him her pain was worsening, she was still vomiting 8-10 times daily, she doubles over from her abdominal pain, she complains of dizziness, begs and cries for help, and I am at my wits end. They prescribe Miralax for constipation, which gives her bowel accidents she can’t control, and at age 14 she has to wear a diaper during long car rides. I have to literally beg the doctor, against his wishes, to perform a colonoscopy because she is still in so much pain and I fear we are missing something important. The doctor still has no answers and continues to say that the pain is “all in her head.”
With the colonoscopy, they find there are spasms throughout the colon – consistent with lymphoid nodular hyperplasia. The doctor himself never calls me with the results. I waited 10 days and finally called and got the nurse to tell me the results. She says the report rules out microscopic inflammatory bowel disease, the colon appears normal, and that my daughter needs a therapist for counseling. That was the last contact I had with that doctor.
Vomiting Continues
Hayley is still vomiting up to 12 times daily, with the average being 10 times every day. She can no longer attend school, she cries all night laying in bed, and begs me to help her. As a mother, this is an unbearable situation to be in and I don’t know how to help her. I am trying to get medical help, but so far all of the doctors are letting us down by saying there is nothing wrong and it’s “all in her head.”
I will not give up until I find someone who can help. Next, I try a different medical center farther away from our home, but more renowned – Children’s Hospital Orange County (CHOC) – and make an appointment with a pediatric gastroenterologist. While waiting for that appointment, Hayley gets so bad that I have to take her again to the ER – but this time I drive the 1 hour to the CHOC ER. They don’t have any answers, but they finally prescribe some medicine for the pain – Tylenol with codeine (something the previous doctors would not do). Also, they move up her appointment with the G.I. doctor by 3 weeks so she will not have to suffer so long.
Before the G.I. visit, once more I take Hayley to the local ER because of the pain. They tell me her blood pressure was different between standing and laying down and they called this orthostatic blood pressure. However, when I asked what this was (is it dangerous?) they said it was probably just because she was dehydrated. Later, her blood work showed that she was not dehydrated. Like always, I kept all of her records in a notebook and wrote down everything the doctors said or did. Finally the CHOC G.I. doctor appointment arrived. When they checked Hayley’s blood pressure, it was 60/40. They checked it 4 times in a row and seemed very alarmed that is was so low, yet they did nothing to further investigate it. The CHOC G.I. doctor investigated many G.I. possibilities but could not find a diagnosis. We also checked Hayley’s blood sugar for days to rule out diabetes. However, after extensive blood tests, etc. – the doctor had no diagnosis.
Getting Worse
Next, things got a whole lot worse. Hayley threw up for 2 days straight without eating anything. She vomited mostly liquid greenish bile, when I saw her violently vomit a large amount of matter which looked like a formed bowel movement. I was so worried that I again took her back to the CHOC ER, and this time they finally admitted her into the hospital. She had what seemed like every test and saw what seemed like every doctor over the next 3 days and nights. She was put on anti-nausea medicine, same as she was taking at home, but much stronger, so she stopped vomiting. That was an improvement, but it did not address the cause of the vomiting.
The G.I. doctor then came in and, before he even examined Hayley, said to me that “You will never get a diagnosis for her. You’ve taken her to too many doctors, gotten too many tests/procedures, and had too many opinions.” He went on to say that the likelihood of getting a diagnosis went down with each new doctor we saw and what Hayley needed was therapy. He spent 5 whole minutes with her. I told him to leave – he was done “treating” my daughter. As for the other testing – her MRI, barium swallow, barium enema, psych test, 5 minute neurological consult, blood work, and rheumatology panels were all normal. She was put on Zofran and an appetite stimulant and sent home. Her abdominal pain never stopped (nor was it ever explained by any of the doctors at the hospital) and her vomiting resumed within 1 week after returning home.
End of the Line
Next on my list of places to try was Children’s Hospital Los Angeles (CHLA), which is about a 1-1/2 hour drive from my home. Hayley saw another pediatric gastroenterologist who suggested a pain clinic and therapist consult. The doctor at the pain clinic said they could not help her because she was “functional” and we lived too far away. Again we were told to get therapy to deal with my daughter’s “obvious psychological issues.” By this time, I had found some information about POTS on the internet (after looking up orthostatic blood pressure) and asked the pain clinic doctor what he thought about this possible condition. He said it was basically not a real diagnosis and that it had no real scientific data or research to back it up. He was extremely dismissive when I told him I had read about people who sounded a lot like my daughter. He felt my daughter was making herself sick, for whatever reason, and needed therapy. Keep in mind that he met her for less than 10 minutes and never examined her before making his astounding diagnosis – he only reviewed all of my old doctor’s notes, tests, etc. This truly was the end of the line as I felt there was nowhere else to go.
A YouTube Video
So, one night after 1:00am, I can’t sleep, as usual, thoughts of my daughter rolling in my brain, I was on the internet. I was researching symptoms – Google searching orthostatic blood pressure, vomiting without obvious causes, abdominal pain, etc. Somehow, I came across a YouTube video of a young teenaged girl talking about having all of the same symptoms as my daughter. Now you have to realize how shocking this was. I had been doing internet searches for months, so had my husband, but to no avail. I guess that I was just never going to give up! So I kept re-wording the way I put the symptoms in, re-ordering them, etc. And I finally saw a blog about a girl talking about her symptoms, which led me to the YouTube video, which I watched, and she was a patient of Dr. Fischer’s. Well, it was like someone had told me I just won the lottery. Here was a teenaged girl who sounded exactly like my daughter getting help from this doctor, who was researching this syndrome, which seemed treatable with medicine, diet, exercise, etc. – I nearly screamed!
The next morning, as early as I could, I called the phone number on the website and Dr. Fischer’s secretary answered and I told her my daughter’s brief history. When she said these words to me “yes, it sounds like your daughter has POTS, and it sounds like we can definitely help her here,” I broke into tears. I can’t tell you, after the 6 months of living hell we’d been through, she was like an angel to me. She told me to send her a brief history and that they would triage my daughter and call me with an appointment! I couldn’t believe my daughter might actually be getting to see a Mayo Clinic doctor! We went from “nothing is wrong with your daughter” to seeing a Mayo Clinic doctor in a heartbeat… I was speechless. I said thank you, hung up the phone, and got right to work on the brief history write-up.
When I had finished and faxed it in, they called me back pretty quickly. I was so nervous and skeptical at this point thinking maybe that they would say she didn’t have POTS or need to be seen, but they said yes, she did sound like she had POTS and that we were getting an appointment. We were thrilled! The only hard part was waiting the 3 months for the appointment, as Hayley had suffered so much and continued to suffer during this time. I emailed Dr. Fischer to see if we could get the appointment moved up, but he said that would not be possible and that we should utilize or local doctor in the meantime. As mentioned before, we have had no help or success with our local help. These were the longest 3 months of our lives.
Hayley at Mayo Clinic
When we finally got the Mayo Clinic, we were blown away. No more doctors who see you for 5 minutes then say “there is nothing wrong with your daughter.” We were scheduled to see 6-7 specialists over 5 days with a host of tests in between. Basically, Monday through Friday, 8am till 4pm, we were busy. Each doctor did his/her own full exam, as least 45 minutes worth, and was extremely thorough. They stayed in the room and talked with us and answered all of our questions, never made us feel rushed or stupid, and made us feel like our daughter would get better. Each specialist did his/her own exam based on his/her own field of expertise, not based on reviewing some other doctor’s notes or reading some other doctor’s opinion.
I was just amazed at the thoroughness and level of professionalism displayed by every single member of the Mayo Clinic team. I’m not just talking about the doctors, but the nurses, aides, techs, receptionists, everyone we came into contact with involving our daughter’s healthcare. After having had such a horrible experience for the previous 9 months, it was such a pleasant dichotomy to finally have happy, positive people who definitely believe in you and know your child is ill and are ready and eager to help. As a frustrated, tired, and frazzled parent on the verge of a nervous breakdown, I can’t convey enough appreciation and gratitude to the remarkable staff at the Mayo Clinic, whom I will highly recommend to anyone and everyone I know in the future. I especially commend Dr. Fischer and his staff, he is the best doctor I have ever had the pleasure of meeting and has a great bedside manner for working with adolescents and their families.
In closing, it has been 7 weeks since our return from the Mayo Clinic. With the regimen of medication, diet, and exercise prescribed by Dr. Fischer (and others), Hayley’s recovery has been nothing short of miraculous. Her vomiting quickly tapered down and has finally gone away. Her abdominal pain has slowly subsided and is now a mild inconvenience, rather than a debilitating condition, which makes her daily life and sleeping entirely manageable. And, most importantly, she has gained 9 pounds (she weighed about 74 pounds when we first arrived at the Mayo Clinic). And finally, just last week, Hayley has returned to high school on a part-time basis. It’s a start, and we hope to have her back full time within the next several weeks.
Editor’s Note: Mrs. Lairmore submitted this story in January. Last week her husband, Robert, followed up with a note saying, “By the way, Hayley just started back to school full-time this week and all is going well. Her recovery continues to amaze both me and her mother.”
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as the mother of a medically complicated teen-ager we have also spent years with docs doing the same thing to us. i am so glad you had the fight to keep looking and your dtg got to return to school, most of the POTS kids are very bright and like school more than being home miserable. good for you. linda in florida
Hi Linda…sorry took so long to reply…I didnt even realize this was here…I was browsing this article and wanted to update everybody on Hayley’s condition…she just this week tapered off ALL HER MEDS!! She has a part time job at our local grocery store bakery and LOVES it..she is a senior in high school ready to graduate this year & go to college to pursue a degree in ART, which she LOVES! She still VERY OCCASIONALLY gets a mild flare of symptoms like headache and fatigue, but other than that she does remarkably well. We feel truly lucky to have found Dr. Fischer…
Hi — We are at Mayo now. My son is 12 years old, and has been terribly sick for 6 months. And, yes! ALL our doctors thought it was psych-related and made-up. We are so happy to be here, and got the diagnosis today. May we be in touch? Thanks much!
I went through the same experience with our daughter, who had just turned 14 when she started fainting, and feeling so sick that she couldn’t get out of bed. It took months of dismissive treatment from many different specialists, from cardiologists to allergists and even from her own (former) pediatrician, until she was finally diagnosed with POTS by Dr. Julian Stewart, in New York. She’s on medication to constrict her blood vessels, and follows an eating and exercise plan. Her improvement is nothing less than miraculous. We fully expect her to grow out of this condition in a year or two, if she follows the normal pattern of POTS in adolescents. It’s amazing to me how many doctors have no compassion, and are not willing to think outside the box to find the answers.
Thank you,
Barbara Hannah Grufferman
Barbara…sorry I just noticed these messages..Hayley has pretty much outgrown her POTS as of this week…she will graduate High School this year, has a parttime job, and hardly ever gets sick anymore…she has tapered off ALL her meds..it is truly remarkable…
my daughter, age 33, just had the tilt-table test and failed it miserable. Sweating, intense nausea, and dramatic change in blood pressure and nearly fainting. We have been looking for an answer for over 5 years. does this sound like pots????
Helen,
I just had a tilt table test a month ago after showing these symptoms for six years. I am now 20, and I am trying to get into the Mayo Clinic currently because my doctors have not been helpful for the last six years other than tossing around diagnoses and saying I need therapy. They pretty much went with the general “Fibromyalgia” diagnosis since I was 14 years old. I failed the tilt table test miserably as well, in the exact way you described. I think you should check POTS out, because that is what my current neurologist is currently leaning towards as the most recent diagnosis, and he has been doing many more tests on me lately to really figure out what’s wrong!
Your story brings tears to my eyes for many reasons. First, kudos to you for not giving up on finding the answer. As patients or parents of patients we must leave no stone unturned. I was 18 when I had similar symptoms and was told it was the flu and that I need therapy too. I persisted and finally received a diagnosis of Crohn’s disease. I’m sure you agree that social networking is valuable to people who are their own advocates and will stop at nothing to get the truth. I’ve been a Mayo Clinic patient for over 40 years and surely agree with your impression on the expertise and amazing medical staff. Continue to share your story with everyone. Send your story to magazines. Start a support group for others with POTS. Your daughter will never forget that you saved her life with the help of Mayo Clinic.
I really hope you are right about my daughter…she is kind of in the bratty teenaged mode right now, I must admit…which is ok I guess since she lost a lot of her “normal” teenage years to this disease. She has basically outgrown POTS for now I hope. We tapered her off ALL her meds this last week and it has been AGES since she has been sick! She has a parttime job at our local grocery store bakery which she LOVES and she will graduate high school this year THANK GOODNESS!! We were so worries that wouldnt happen cuz of her illness and absences and bad grades but she is…going to Community College but thats ok. She loves Art and will be studying that. Transfering to a major university afterwards. I want to start a POTS group….I think I will…I LOVE knowing I have helped people. I dont think my daughter cares yet that I helped her but maybe someday. Thank you for what you said it helps…when I read my story it feels as if I am reading someboday elses story..I cant believe I DID ALL THAT!! And I suffer from several chronic health conditions myself….fibromyalgia, migraines, degenerative disc disease, bladder problems, etc….chronic pain is a DAILY STRUGGLE! But as Moms we put our kids’ health above our own always!!
Thanks so much for sharing your story! I was treated for cancer at the Mayo Clinic, and it is the model of what health care should be like. I wish all doctors would be so collaborative and humane! God bless the Mayo Clinic.
I am so overwhelmed after reading this story..My son and I are going through the exact same situation with pain/doctors/dismissal/nothing-more-that-we-can-do..we have been to the best doctors in Australia for his condition, but I am still not happy nor satisfied with their reasoning for my son’s symptoms.
My son does not have POTS, he has a completely different set of citcumstances, however, it seems that we could insert out names into this story and change the symptoms, and it would be ours. We have had input from doctors at the Mayo Clinic, and now, more than ever, I KNOW THAT WE HAVE TO GET TO MAYO.
Thank you SO much for sharing Hayley’s story. I feel empowered and ready to do whatever it takes to get to the US and get the help my little boy so desperately deserves. Thank you, thank you, thank you. Kate from Brisbane, Australia.
Oh, Kate, you are so welcome….I am so sorry for your experience and I HOPE you have made it to the Mayo Clinic by now…..WOW. What a long way to have to travel to get medical treatment…I thought I had a long way to travel…Just wanted to let u know that Hayley is all but better now, just tapered her off ALL her meds this past week because she hasnt been sick in quite some time. It doesnt mean she wont EVER be sick again, but Dr. Fischer and myself feel confident that with continued diet, salt and exercise she will continue to flourish….she has a parttime job, she is about to graduate high school, and she is going to go to college to study Art, which she is great at! We feel so lucky to have found Dr. Fischer and the Mayo Clinic team…I am thinking of starting a POTS support group….many people have told me too….good luck to you!
Reading this story brought tears to my eyes. I live in australia and following 2 years of tests and seeing specialists (over 300!) i was pushed out the door being told to get phsychological help because ‘it was in my head’. FInally after over 8 months in hospital i flew to the Mayo clinic in Minnessota…..The best decision i ever made in my life. When i got there (in a wheelchair) i cried and cried out of happiness. Finally i felt like these doctors believed me and promised i would get better, i felt like it was the beginning of the rest of my life. I spent 1 month (12hrs a day) having tests and seeing specialists and finally came up with my diagnosis, my angels had answered my prayers. its 12 months later and after daily full time rehabilitation i am well on my way to recovery. DOnt waste time seeing specialists and having tests done elsewhere go straight to the MAYO. There is nothing more crushing to the spirit than specialists who dont believe you are sick…..The doctors at the MAYO are angels. Thank you to the staff for giving me back my life
Sara 30yr old female
YAY SARA!!
Dear Christine, My daughter (14) was also diagnosed with POTS at Mayo by Dr. Fischer. We had the same wonderful experience there that you had. We fought with our local doctors for a year before going to Mayo in April of ’09. Since then, she has been improving every day. She was put on a beta blocker and given exercise and diet guidelines. While she was improving, we took it a step further and put her on a diet of only real foods – unprocessed, whole foods and NO sugar. This seems to have given her an added boost in her recovery. She was actually able to swim competitively this year, unlike the previous year when she could barely get out of bed. I pray that anyone with a child going through this finds your article and gets the help they need. Thank you for sharing your story. God bless, Sarah
Sarah….GOOD 4 U!! What u did was a GREAT IDEA!! The nutritionist @ Mayo told us to give Hayley high fat, high salt food to our daughter because she was SOOOOO underweight….I WISH she would eat healthier, I really do. I recently joined Weight Watchers and lost 65 pounds, I eat healthier than she does!! She loves things like Fried chichen nuggets and french fries, bagels with cream cheese, quesodillas, spagetti, etc…she has ALWAYS been a picky eater…right now her favorite is a salami sandwich on sourdough bread. Whatcha gonna do? She only likes apples for her fruit. Oh well, I’m just happy she FINALLY weighs 100 pounds at age 17! I cant MAKE her eat what she doesnt want to at this age, I just encourage her to eat healthier all the time. She is off all her meds now and for the most part grown out of the POTS we believe so HOORAY!!
Mayo Clinic was my last resort for a severe heart problem.I am living testimony that the staff there try their best to help. It would take a book to describe what I went through but I got good results- amounting to a blessing.
I only wish Mayo Clinic had a bureau that sold medical insurance where truly viable plans could be recommended and accessed. Although Mayo Clinic has lower fees than many other instutitions , it is still difficult for foreign self paying patients. Any advice out there for other foreigners who do not want to be leeches??????
That is very sad but I have no idea what to say to you…sorry it took so long for me to answer I just found this page…
Hey everyone. Its me Hayley. Yes the last year was very confusing, hurtful, and sucsessfull all throughout. I just want to say believe in your child and always stick up for em!
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My son (16) has been dealing with the POTS symptoms since December, however he actually started out with severe diarhea – 5 to 15 times a day running to the bathroom. He actually started passing out while getting up to go. He was seen at Columbus (Ohio) Children’s Hospital, and has since gone to Case Western University Hospital in Cleveland. They are treating him with medication, salt and exercise that match the treatment that Dr. Fisher lists. I have two questions for anyone reading this: first, has anyone else diagnosed with POTS had chronic diarhea? Second, has anyone else diagnosed with POTS taken Accutane for severe acne? Thanks.
No, Hayley had not had diarhea except when they gave her medicine for constipation and it went the other way. And she hasn’t taken Accutane for severe acne. I haven’t heard of either but u may want to look at the website dinet.org which discussed POTS in more detail along with other disautonomias…it has been a very useful website to me. Good luck and I hope it helps.
Thanks to everyone who “commented positively about me and my daughter. I have been a stay at home mom for the last 16 years and I don’t hear good job very often. To have so many positive comments, especially after hearing so many negative ones for so long, is so uplifting. I’m going to try to print them out and keep them in a notebook for future reference if I’m ever having a really bad day. Hayley is doing much better overall, but she still does have her bad days, and occasionally bad weeks, which we are in the middle of right now. She has missed two days of school this week with horrible headache, stomach ache, sore throat, fatigue, etc….not sure if she caught a bug on top of POTS or what….but overall she has been doing great at school this year. Thanks again for all the support and well wishes, and good luck to everyone else.
I am wondering how Hayley is doing a year later? My daughter was recently diagnosed and had some improvement after being treated but treated but that only lasted a few weeks. I was wondering what Hayleys treatment plan was?
I am just amazed to see that so many others have dealt with doctors that will dismiss you with “it’s a psychological issue” when they don’t know what to do. My daughter has been dealing with this for over 2 years and is now 16 with a probable diagnosis of POTS, but again the local doctors have only seen 6 patients with POTS in their careers and gave her the “textbook” starting medication and said “see you in 6 months.” Needless to say, there’s been little improvement. I know that Mayo Clinic would be wonderful, but at this point Dr. Fisher’s office told me it was over 18 months to get an appointment. I couldn’t believe it-so now what?????
DONT GIVE UP!! KEEP CALLING, ask for cancellations, call everyday, be the squeaky wheel!! Your daughter needs you to do it!! I guess thats why I was born such a bitch!! It all makes sense now, it was so I could be such an advocate for my daughter when she got sick!! I DONT TAKE NO FOR AN ANSWER!! YOU SHOULDNT EITHER!!
I cried reading your story, tears of sorrow followed by tears of joy. I have been going through very bad health issues brought on my breaking my back 9 yrs ago that has me deteriorating in multiple areas ever since. Doctor upon doctor telling me “nothings wrong” and “it’s the medicine your on” blah blah blah, meanwhile I’ve lost 45 lbs in 6 months and continue to plumet. I leave tomorrow morning for Mayo in Jacksonville, FL after a 3 month wait and pray they can help me. Your story certainly inspired and uplifted me as I’m so scared they will say the same thing my prior gastroenterlogist has said. I have Superior Mesenteric Artery Stenosis that is followed by a syndrome called SMA Syndrome and even with the CT Scan supporting the stenosis my doctor wouldn’t help me. I’ve cried and cried even begged for help. What in the world is wrong with doctors today, not all of course but my gosh I’ve seen several to no avail. God Bless you, your family and Hayley.
Well I CERTAINLY can relate and hope u got some answers! Not only did Hayley have problems, but I also suffer from many chronic illnesses myself! I have spinal stenosis, degenerative disc disease, fibromyalgia, migraines, and some urinary tract problems that make EVERY DAY a chronic pain nightmare!! But we Moms put our childrens health above our own so I dealt w/Hayleys problems w/out complaining about me for a LONG time….hope u found answers….
Your story is just like ours. My 15 year old daughter cannot function and has not been able to function for the last 8 weeks. We have been to the ER, Cardio, Neuro, and GP. All blood tests are normal. Tilt test clearly shows her heartrate rise from 70 to 140-150 upon standing. She is soaking wet with sweat when this happens. No compassion or concern from Drs. here. “She will grow out of it.” My child was a banner roll student and promising athlete and now can barely walk to the bathroom without almost passing out! I am on the verge of a nervous breakdown. I have been reading about POTS since this all started and have felt in my gut that this is what she has. The hard hard hard part is trying to convince a Dr. of this. I do not wish this on anyone. It is so troubling to watch your daughter suffer day in and day out. can’t attend school or sports and sees no friends because they are all living a normal teenage life.
get a blood pressure monitor and take her readings while sitting, then after standing for a few minutes…then call the Mayo Clinic with these readings and tell Dr. Fischer’s office the results….DEMAND that she be seen!! This can be DEADLY!! She is sick and needs to be treated!! Do NOT take NO for an answer!!!
After reading all of these stories I am crying like a baby. I as well have been sick for a year since the birth of my little girl. I am 31 years old and a former marathon runner. I have gotten so weak that I can barely stand up for 10 mins without feeling like I am going to collapse. I went to doctor after doctor and ER after ER. Finally I was sent to the Mayo clinic in Jax. I saw an amazing doctor who spent an 1-1/2 hours with me going over everything. He ordered several test and I too spent 3 long days going in and out of appts. I was just diagnosed last Wednesday with POTS. After seeing the Autonomic Neurologist to get my Tilt Table test results back they came back with the conclusion of POTS. However it was really weird because as I sat there in front of them in a wheelchair, their solution was that since there is no cure for this disorder I was to try to relieve the symptoms by increasing my salt intake, drink gatorade, and do slow exercies and hopefully in 6months to a year I may see an improvement. (however I was not given any other instructions or exactly how much salt, type of exercies or any other information) I tried to ask questions and they just looked at me and said only time will tell. I left feeling confused. I am happy this syndrome is not life threatening but it is life altering! I came home to my two little ones and I feel just as discouraged as I did when I started to get sick. I feel very overwhelmed and not sure what to do next.
@ Theresa Kovacs, I am also a young mother who was diagnosed with POTS after the birth of my son. It can be so hard and frustrating not to be able to take care of your little ones when you can barely function yourself! I have been to several different doctors (local and out of state) and each has given me a different treatment plan. My goal right now is to get in 8000mg of salt a day, exercise for 1 hour (not necessarily all in a row),take florinef, and drink 80 oz of liquid. I am also supposed to wear thigh high compression stockings. All of this does help and some days are pretty good. I hope you are able to regain your strength. Right now I am waiting to get into Mayo with the hopes of having a clear plan that will make a drastic difference. Good Luck to everyone with POTS- it can be really hard some days but we can all get through it!
I dont know where Mayo in Jax is but watch Dr. Fischer’s you tube video I think he talks about his treatment plan…also find a doctor who will prescribe the Beta Blocker metoprolol for you…it is for low blood pressure. It worked WONDERS for my daughter. My daughter was advised to exercise for a MINIMUM of 30 minutes DAILY, whether or not she felt well…cardio…and also strength training after that…legs, arms, etc…to make the blood pump to your muscles. Hope this helps a bit. Look up the Mayo clinic youtube channel (Minnesota, Dr. Fischer), Pots stuff, and follow his advice,,I think his nurse even talks on there about what to do, eat, exercise, etc….
As a 15 year old teenager, i can relate. i was diagnosed with POTS about two years ago. Life has gotten a lot better and easier since i’ve been to mayo. There are still days when i struggle lots. I hope Hayley is feeling better.
Maria,
I am a mother of an almost 15 year old daughter who has just been diagnosed with Dysautonomia and POTS in the past week. Would love to hear more about your story and about anything that worked for you and help with your symptoms. Glad to hear your life has gotten a lotter better!
thanks a lot, hope you are feeling better as well, Hayley is all but better and off all her meds except the salt tabs and vitamin D.
You story motiviated me to seek help for our daughter, age 24 who has been sick for more than 2 years with chronic fatigue and severe brain fog. We went to the Vandebilt Autonomtic Dysfuntion Center in Nashville, where Lindsay was admitted to a study for two weeks. After seeing 17 different doctors in St. Louis, we were so grateful to finally recieve a diagnosis of POTS. While there is no cure yet for this terrible disease, Lindsay did learn a great deal about her condition and strategies to live a better life. We’ve just returned, so we will wait and see how the beta blockers they gave her will work. We can’t recommend Vanderbilt enough – they are truly compassionate and are committed to helping patients. If the Mayo Clinic is not an options for you, I would encourage you to contact Bonnie Black at the clinic at Vanderbilt.
I LOVE hearing that I motivated somebody to seek help…I feel like I did something worthwhile in the world. I feel so happy for your family. Thank you for posting this. Sorry it took so long for me to find this and post back, I hope you see this! Hayley is by now all better. She is off all her meds except salt and vitamin D. She just got off this week. She still exercises a little bit but works at a parttime job and will graduate high school soon and then off to college. I feel so lucky we made it this far.
I just happened to run across this website. I too have Pots and spent plenty of years trying to figure myself out! It got old hearing doctors say “I have no clue” or “Its all in your head!” I was fortunate enough to have my “Endocrinologist” send me to the Mayo, MN 5 years ago. A great place to go! Oh yeah, and my sister has Pots too…I am on two Facebook websites for Pots/Dysautonomia if any of u r interested. PotsRecovery and California Potsies. Both are private but I’ll get u in if u Private message me on Facebook (Marie Lombardi Osterberg)
Wow! will see u on Facebook soon I hope!
My daughter was often called a liar by her middle school nurse, and frowned upon by some medical staff. She has had POTS for 7 years and only diagnosed in 2011. I am so glad to read all of the findings that are being reported.
Since my daughter had been thought to be ‘lying’ about her symptoms, most doctors have not yet heard of POTS and the few that have think it is a ‘blanket term’ and stems from something psychological, however, the doctors who are doing research in this field say it stems from an autoimmune virus such as EBV (mono) with some form of trauma due to physical or stressful trauma. Look back through your daughters records and see if she had anything like that or maybe even fifth disease as a child.
Good Luck and Prayers
Vickie
Yes, maybe she had an autoimmune virus as she did have some sort of “cold” or illness a while back before she got this I think. Hard to remember that far back. I’m not sure if she had fifts disease as a child I will have to think back on that. thanks thought that is interesting. Autoimmune diseases run in the family, I have MANY, so I am NOT surprised.
Why is it they always seem to want to jump right to that “lying about symptoms” So sad
I meant to say, since they thought she was lying and she knew that she was not, she has decided to become a nurse, (BSN) who will also, devote part of her time looking into retro-viruses and unusual diseases. (Things that maybe our part of the world hasn’t been exposed to, but other parts of the world have.)
She just wants each child to know that she believes them when they say “I’m not lying and I don’t need attention!”
Haley’s story sounds just like my daughter’s!! Tons of docs who can’t help, one GI doc who blamed her (we never went back!), endless pain and vomiting, hospitalizations, endless invasive tests, etc. I finally heard about POTS when a friend of a friend who had a girl with it sent me a slideshow about it. I asked our new GI doc who said, Let’s treat it and see if she gets better. She did! Then she started to get sick again, but we are doing neurofeedback now, and it seems to be helping. Basically it’s allowing the brain to retrain itself to get out of the fight-or-flight mode.
We are still waiting to get in to see Dr. Fischer at Mayo! We’ve been waiting for 9 mos! Still no appt. I am very very disappointed that Mayo is so slow. I’ve decided to try to fix this on our own with neurofeedback but would still go to Mayo in a heartbeat. Do you know if they do neurofeedback? What are the meds the Rx’d for your daughter, if you don’t mind sharing? We are on salt tabs and fludrocortisone (to increase blood pressure) and neurontin (for pain). Thanks and best of health to you all. You are a fierce and amazing mother. Never give up!
I am 21, and have been passing out, having migraines and extreme dizzines with extremely low blood pressure for the past 4 years. It was diagnosed as POTS about year and half ago. Even before I was diagnosed though, I was on blood pressure raising/regulating meds and a high salt diet which helped to stop me from fainting everyday, and moved it to about once a month. I was wondering if anyone else had similar symptoms to this or if it was just a blanket statement because they didnt know what to tell me anymore. I would also like to say thank you to all of the parents who are helping their children go through this, I know it hasn’t been easy on my parents to see me attempt to lead a normal life and just get screwed up all over again.
I am 16 and your not alone! I have those symptoms, but I haven’t passed out yet though I come extremely close. I’m also diagnosed with POTS and there’s also different “umbrellas” to POTS. I have the POTS dysautonomia syndrome, POTS is just a general term I’ve figured out by researching. I hope I’ve helped! Good Luck(:
Oh yeah, I meant to also say that I don’t seem to have the fatigue problem. I’m still very active, just more cautiously so then I used to be. I just don’t do anything alone.
Thanks for your post..nice to hear from a kid who is thankful to her parents for what they have done…I hope Hayley is thankful to me someday…She seems to self absorbed right now to be. Thats ok, she missed out on alot while she was sick, but it would be nice to be thanked and acknowledged for what I did for her. Just sayin.
Another Clinic that helped me was U Texas Southwestern in Dallas. They have the only full autonomic testing lab in the nation (tests how you sweat, tests breathing and heart rate, tilt test, etc). All those tests in one room for 45 minutes!!
Dr Levine was the first to diagnose me.
Best of luck to all the “Potsies” -LOL. Have been a POTS suffer for over 50 years – the worst time was in my 30′s. Speaking from experience, accurate diagnosis is very difficult to come by, especially back then. Was through all the “emotional” stuff until they finally witnessed the blood pressure falling upon standing. But, it does get better in time – a long time for me – about 8 years at least. Never really go away but it is very easy to live with after the bad stages. Best of luck folks. KennyB
I was diagnosed with RSD in my early 20s following a horse riding accident and surgery. I was first diagnosed with POTS about 7 years ago verified by a tilt table test. I have also tested SCL-70 positive for Sceleroderma/Systemic Sclerosis am diabetic with HUGE blood sugar swings, chronically elevated WBC to the point they thought I had leukemia when it went to 22,000 with no infection present and they have even suggested possible Ehlers Danlos. As I became sicker I lost so much weight my own father didn’t know me when he saw me.
I have seen SO many doctors across the state of Texas some of who are SUPPOSED to be experts in this field. I have been seen at Scott and White Austin, UT Dallas. Doctors are SO SO SO SO rude and ALWAYS seems to want to say it is in your head when they can’t figure it out. I have been treated so badly by physicians in general that I have developed almost a cynical mistrust of them all. There are several Texas docs that need to get OUT of the field as their treatment of me bordered on cruel (this was witnessed by others) Once I was told I HAD NO RIGHTS!!! In THIS country I was told I had no rights are you kidding the land of liberals and being politically correct??? I have been accused of faking my illness…. lemme as you HOW do you FAKE a blood sugar of 422????? They ran drug tests and said I was doing drugs that elevated my heart level (all negative)saying I had to be doing something to make my heart rate 190. WHY are doctors ALLOWED to be so cruel? And I say ALLOWED because my only attempt to have one doctor disciplined through the Texas Medical Board resulted in NOTHING the TMB stood right by their doctor who was so blatantly in the wrong. One doctor refused to see me again till I had a psych consult, accused me of faking my illness, causing my own weight loss and not being a diabetic (I was under the care of the same endo for 20 years till he retired and I gave her the mans name she refused to call him) then she unethically terminated the doctor patient relationship despite the fact that my weight had dropped dangerously low and it was obvious I was very ill. I went for my next scheduled appointment and was turned away telling them no doctor in that office would see me. That was then end of my 27 year life in Texas I moved away shortly after and it broke my heart.
Ok that brings us to today. I moved out of Texas when I became so ill I could no longer function and getting help from anyone in the closed minded medical community in Dallas with one of the largest healthcare systems BMC being the absolute WORST! The last doctor I saw in Dallas told me sometimes we die waiting for answers and that HE thought my POTS was under control yet my heart rates are still SO ridiculous I have had to abandon my business, my active life and am now basically housebound. I am living in the city where I was born and have been seeing a doctor here who did a pacemaker/modification that seemed to have solved the problem. After my surgery I didn’t see my heart rate above 90 (it had been average 150 and as high as 224) even when I TRIED to make it… of course I was THRILLED. Then slowly the heart rate crept back up till we are pretty much back where we were. The doctor here has me scheduled for an ablation in 8 days. I am extremely concerned about it as it says that ablation CAN make POTS patients worse. I have a new primary doctor here and I like him as much as I can any doctor and he at least seems to be trying to help. I am doing a 24 hour urine now looking for Addisons disease and am going back to a rheumy to see if possibly the SCL-70 might be now posing the problem at last visit it was “positive with no visible sign of disease progression”. My concern is ablation is permanent and if that isn’t what is wrong WHY am I having it done? I am so confused, each doctor tells you something different blah blah but they are about to permanently alter my heart and make me pacemaker dependent for the rest of my life and I have concerns.
Sorry this is rather ramby but frankly I have 7 days now to make a decision. Added note….. my sister died in 2006 of a ruptured aneurysm my father is terrified he is losing his only remaining daughter. Thanks any suggestions will be welcomed but please try to be positive I have had enough negativity and cruelty from the medical community to last me a lifetime. Thanks
Thank you for your note and we are sorry to hear of the medical problems that you are facing. Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this correspondence. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The numbers can be found at http://www.mayoclinic.org/ under “request an appointment.”
Well then feel free to delete the post. I don’t want anybody’s sympathy I want to know how to get better and also understand why doctors are allowed to belittle and bully sick patients like Hayley and myself. I am glad little Hayley is doing better, there is nothing worse than seeing a child especially your own suffer.