Dysautonomia/Syncope

Posted by hayliesmom @hayliesmom, Oct 12, 2012

My daughter just turned 13 and has been passing out since June 2010. It wasn’t until this year when her symptoms worsened that we finally were told she had Postural Orthostatic Tachycardia Syndrome (POTS) that physician put her on Atenolol and sent us home saying she will grow out of it. We then purchased a BP machine so we could try to monitor that when she was symtomatic. She was unable to function on the Atenolol, but we noticed that not only was her BP very LOW, at times her BP was VERY HIGH which I found odd, so I manually took her BP and the reading was the same. We researched this and then drove over 4 hours to a doctor that “specializes” in autonomic disorders, which then took her off Atenolol, put her on Florinef, Zoloft & Klonopin. He informed us that, she does have POTS, however her diagnosis is more complex than just POTS. He diagnosed her with Hypervagal and Hyperadrenergic Dysautonomia. They had to decrease the Florinef because her pressure was still too high at times, that didn’t work, he has now added a small dose of Atenolol 12.5mg back to her medication list, to see if it would balance her pressure out some. It has been over a month on this medication regiment and its not working today her pressure was 158/140 then dropped to 90/60. In addition to the constant wide swings in her blood pressure, she has began to have what looks like seizures on occasion when she passes out but the Neurologist has deemed them Convulsive Syncope or some type of non epileptic “Autonomic Seizure” which our “Autonomic Specialist” disagrees and says there is not a AUtonomic Seizure. We have voiced our concerns of the constant strain on her heart/kidneys etc with her blood pressure being SO high then dropping on a regular basis, most of the typr when she is HYPERtensive she is not symptomatic and some of her BP readings have been what is considered stroke level for adults. Their is no one in our area that is familiar with Dysautonomia, most of the time they look at us like we are nuts, and ER doctors, despite Paramedics telling them her BP was 180/120 they are incorrect. My daughter has went from a healthy active child that played fastpitch softball to a child that gets short of breath, dizzy, has BP problems, chest pain, numbness in her legs, headaches, GI problems and either sleeps all the time or can’t sleep at all and has only been able to manage to stay at school the WHOLE week once since school started this year. I truly feel that there is more pieces to her medical puzzle and that something is being missed. We have been told several times when Paramedics were in route that she had to be given mouth to mouth. I do not understand why we can’t find ONE physician that is willing to take the time to look at ALL of her symptoms to know for sure there is not more to her diagnosis. I see patients in their 60’s with known cardiac issues with blood pressure readings like my daughters, but yet we have physicians here telling us not to worry about her blood pressure. But how can you ignore a 13 year old with a BP reading of 158/140, whos syncopal episodes have increased despite medication, she c/o left arm pain, chest pain, fatigue, the list goes on. I worry everyday that the next time she passes out, she may not get back up or that she may have a stroke due to her high BP. If there is any one that may have a suggestion or similiar symptoms I would appreciate any feedback you may have.

Liked by Anonymous

This is unacceptable that someone can’t help your daughter. I have svt and arrthymia, hbp, and now 3 leaking heart valves. Yes, I am old, but my problems with svt’s started when I was 21. It’s not been a healthy life. And because of what I am reading here, I have to beg you to take your child to the Cleveland Clinic in Ohio, as it is the number one heart hospital in the U.S. I believe they will find out the problem and help her. God Bless You. My heart goes out to a child or adult who is living like this and needs help right away.

Hello, I am a mid 40s female and like your daughter had an active lifestyle until recently, when I began experiencing many of the symptoms your daughter has. The only difference is that my BP does not rise to high levels. I have also had blood sugar problems, including hypoglycemia and erratic blood glucose levels. I just had an EMG and it showed some neuropathy on my right side, although I am not experiencing any signs or symptoms of it.

I completely share your frustrations with lack of appropriate medical care and access to physicians who are knowledgable in this area. I am waiting to get into Mayo Clinic at this time, with an appt. in late January. I have waited months to get the appt. In the mean time I am seeing an endocrinologist, cardiologist, electro physiologist, and a neurologist.

I have been told my case is complex and that it will take a long time to determine exactly what is wrong. I have many symptoms, and the pieces do not all seem to fit together. For example, my adrenal system recently began to shut down and I now have adrenal insuffiency. I have been told I possibly have POTS, like your daughter, or that it could be M.S.A, a much more debilitating and progressive syndrome. Very little awareness of these syndromes is in the medical community where I live, and you are correct that EMS and hospital ERs have never heard of them. I have been to the ER many times and the Drs. do not believe me when I state my symptoms or explain what happened to cause me to go to the ER for treatment.

I wish all of the best for you and your daughter.

I am happy to be able to say that I gave in after a co-worker recommended yet another cardiologist and said how much she liked her..I figured I had nothing to lose at this point other than another co-pay..This doctor repeated my daughter tilt test and thankfully decided to push her a little further and she was able to duplicate the syncopal episodes that she has been having and found that my daughter was not only passing out but her heart was stopping (asystole) for over 7 seconds! Although its sad that I was “happy” about this but the last 2 years have been miserable for her and I always felt there was more worng than all the other doctors were finding. She is now 8 days post op from having a pacemaker placed in her heart, and it has been 12 days since her last episode of passing out. They did tell us that the pacemaker may or may not keep her from passing out but so far so good, but the doctor also said that it was her Dysautonomia causing the pause (her heart to stop)…A couple of days ago I noticed that her cheeks were pink, for most moms they prob wouldn’t think anything about it..me on the other hand teared up…I can’t tell you the last time her cheeks were pink…My advice to everyone is you know your body or your child better than anyone else..although its hard and many times I felt we were at the end of the road, I kept pushing and it paid off…I also plan on sending a letter to every physician that said either nothing was wrong with her or that it was all in her head, maybe it will make them think twice before the dismiss another patient and their symptoms..Thank you both for your responses..

Hi I’m also a 13 teen year old and I also have dysautonomia as a teenage girl it get in the middle of just trying to be a teen my doctor recommend us going to a mayo clinic do you have any recommendations ?

@anon22581899

Hi I’m also a 13 teen year old and I also have dysautonomia as a teenage girl it get in the middle of just trying to be a teen my doctor recommend us going to a mayo clinic do you have any recommendations ?

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I am so sorry you have Dysautonomia, it has been a terrible ordeal for my 13 year old daughter. What state do you live in? And maybe I can share some of Haylies doctors info with you. If you are interested in talking to Haylie since you both are the same age and have the same diagnosis, I know she would like that. She hasnt found another girl her age that is going through what she is..

@anon22581899

Hi I’m also a 13 teen year old and I also have dysautonomia as a teenage girl it get in the middle of just trying to be a teen my doctor recommend us going to a mayo clinic do you have any recommendations ?

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Hi, I know it is 4 1/2 years later, but my son, daughter, and I are all severely affected by this terrible disorder, so I though I would go ahead and connect with you, if you are still active. I have spent the last several years caring for them as my full-time job and doing tremendous research. We have made HUGE progress, thankfully, with both of my kids, and I am stable at this time. Would love to share with you if you would like.

Thank you for digging up this discussion @widman and offering to share your experiences with dysautonomia. You may also be interested in connecting with @neeci and @mojoearle in this discussion “Diagnosed with dysautonomia. Looking for treatment options.” http://mayocl.in/2bKzAwa

Welcome to the community.

@colleenyoung

Thank you for digging up this discussion @widman and offering to share your experiences with dysautonomia. You may also be interested in connecting with @neeci and @mojoearle in this discussion “Diagnosed with dysautonomia. Looking for treatment options.” http://mayocl.in/2bKzAwa

Welcome to the community.

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You are welcome! Glad to connect with people. Our journey has been going on many years now, and thankfully, we have made huge progress, so I thought I would share with @haylie’smom, because things sounded so familiar. I have hundreds of answers for my family now that I only had frustrations and questions about four years ago. It has been a harrowing time for us, but we are in a much better place now. Do you know how I can connect with @hayle’smom? It’s been over four years since she posted, so I would be interested in finding out if she has any answers, too! Maybe we can put our information/heads together. (By the way, I stumbled upon this discussion by googling “dysautonomia and blood sugar swings.”)

@colleenyoung

Thank you for digging up this discussion @widman and offering to share your experiences with dysautonomia. You may also be interested in connecting with @neeci and @mojoearle in this discussion “Diagnosed with dysautonomia. Looking for treatment options.” http://mayocl.in/2bKzAwa

Welcome to the community.

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It is possible that Haylie’s mom has turned off receiving notifications from Connect 🙁 But your message will definitely help other members here on Connect, and other people googling dysautonomia as you did 🙂

@colleenyoung

Thank you for digging up this discussion @widman and offering to share your experiences with dysautonomia. You may also be interested in connecting with @neeci and @mojoearle in this discussion “Diagnosed with dysautonomia. Looking for treatment options.” http://mayocl.in/2bKzAwa

Welcome to the community.

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I know these posts were 2 yrs ago but my story sounds so much like theirs. Curious how they are doing now after they possibly having a pacemaker for a few yrs already?
My daughter started fainting when she was 13 yrs old. Dr did tilt table test at the time. Saw that her heart did stop. She had a 5 second pause. She also always had extreme low blood pressure. They put her on Atenolol and said she would grow out of these fainting episodes ( which only happened with anxiety or pain).
Ex. Giving speech at school or witnessing a friend getting injured or getting her ears pierced. From 13 to 17yrs old she did well on the Atenolol.
18-24yrs old she began fainting again & had extreme migraines which prevented her from finishing college. Multiple drs could not help her. They blamed her for being dehydrated & poor eating habits. We saw cardiologists& nuerologists and lots of medications that never helped.
She became extremely thin, pale, weak, always tired. Always having pain from migraines. GI problems started occurring. She’s lived this way for roughly 10 yrs. Just this yr she finally got the correct diagnosis with Dysautonomia & they want her to get a pacemaker because she did another tilt able test and her pause was 30 seconds. Yikes! She is being referred to Mayo Clinic.
She is now 28 yrs old. She is seeing an automic specialist who has also been a big help.
This all came about the last few months. So we are first learning about Dysautonomia now. We had never heard of it before nor POTS neither.
Anyone’s stories or information are greatly needed and appreciated! A worried mom

Welcome to Connect, @sydneysmom
What a long journey you, your daughter and family have been on. I'm tagging @kariulrich @neeci and @kfletch to bring them into this discussion. I know that Kari is no stranger to long searches for proper diagnosis and managing multiple conditions.

While we wait for others to join the conversation, you might like to read this story on Sharing Mayo Clinic:
Learning to Live Well with POTS Brightens Daily Life for Christine Esposito: https://sharing.mayoclinic.org/2016/12/15/learning-to-live-well-with-pots-brightens-daily-life-for-christine-esposito/

You mention that the automic specialist has been a big help. What treatment and management recommendations are helping your daughter?

@colleenyoung

Welcome to Connect, @sydneysmom
What a long journey you, your daughter and family have been on. I'm tagging @kariulrich @neeci and @kfletch to bring them into this discussion. I know that Kari is no stranger to long searches for proper diagnosis and managing multiple conditions.

While we wait for others to join the conversation, you might like to read this story on Sharing Mayo Clinic:
Learning to Live Well with POTS Brightens Daily Life for Christine Esposito: https://sharing.mayoclinic.org/2016/12/15/learning-to-live-well-with-pots-brightens-daily-life-for-christine-esposito/

You mention that the automic specialist has been a big help. What treatment and management recommendations are helping your daughter?

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Dr prescribed Cymbalta which has helped with pain and helps her to sleep more than 4 hrs at a time. She typically would wake up constantly from neck pain or migraines. She is doing Botoxfor the migraines which reduces the severity in half. Dr started her on Mitadrine? It is to keep her blood pressure up since she has always had low bp. Dr also sent her to yoga specially for people with Dysautonomia.
This is the first time in yrs that she has found any relief.
It has made us hopeful that she can get back to a normal active life.

My wife was diagnosed with pure autonomic failure almost nine years ago. It is not a well known condition. I recently had to call paramedics after she had a really prolonged bout of unconsciousness and they both had never heard of this condition. She has blood pressure that rises to 200 – 225 systolic when laying and drops to around 60 – 80 when standing. This condition also affects her digestive system causing slow food transit so she has to take several laxatives to help the process. She can sometimes go as long as 4 weeks without passing out then she has a spell where she passes out up to three times a day without any forewarning. She is unable to walk more than a few yards before becoming very unsteady so has to use a wheelchair for her own safety. Her neurological team are very good – she gets out patient checks quite regularly and goes into hospital every couple of years for re-testing on that awful tilt table amongst other tests. I wish everyone well who has this and any other related conditions.

Totally agree Cleveland Clinic Ohio see Dr Mark Hyman Functional Medicine MD

I have read that POTS can be diagnosed when in fact it is really a spinal fluid leak. May be worth checking into

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