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Dysautonomia/Syncope
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.
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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?
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.
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3 ReactionsMy 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
Fantastic thread!!!
I’ve spent the last 16 months watching my 14 y/o son decline from the exact same symptoms. I’ve spent over a year battling with clueless neurologists who conveniently couched his condition as conversion disorder or other unexplained psychiatric conditions including bipolar disorder & schizophrenia. I’ve watched these healthcare providers fumble along at a turtle’s pace failing at every turn to provide my son with the proper care and it’s because these healthcare facilities lack the multi-specialty combined approach to properly screen for conditions such as dysautonomia. My son was finally diagnosed with dysautonomia including POTS & convulsive vasovagal syncope's, but it was only because my wife and I refused to accept a lazy, unsupported diagnosis of psychiatric disorder and refused to put our child on SSRI’s and other major antipsychotic narcotics without a proper comprehensive diagnosis. Fortunately, my wife has a strong background in mental health and I’ve spent 30 years in medical research & development, so we spent the last year researching his symptoms and potential culprits and ruling out every other possible etiology. it was through persistent online research & great social media/boards, just like this one, that we stumbled upon the connection between my son’s symptoms and dysautonomia, POTS and vasovagal syncope. We can now begin to get my son the proper help. My 12 y/o daughter was just recently diagnosed with POTS as well and the symptoms are undeniable. At least we are now well prepared to address her condition. We are in Denver but are willing to travel. If anyone has recommendations for key opinion leaders in the treatment of dysautonomia and POTS, our family would greatly appreciate it.
@maddoxsdad I was reading your post and thinking about what could cause blood pressure changes, that then could be involved in vasovagal syncope. I know there are some physical spine conditions that interfere with blood flow to the brain, and thoracic outlet syndrome can also stop blood flow to the brain by turning the head and compressing vessels which can cause fainting in severe cases. (I have TOS) I found a Physical Therapist in Europe posting about what he finds on MRIs, and writing articles about these types of things that easily can be missed. He posts on facebook as Training and Rehabilitation. He has articles on his website, but recent findings he puts on facebook. Below is one on his recent posts where he talks about posture interfering with jugular vein flow that causes intracranial hypertension and increased cerebrospinal fluid pressure. Vasovagal syncope is also a protective mechanism to lower blood pressure when it gets too high (like from emotional stress). So I am just putting the question out there in case a physical therapy or imaging evaluation could uncover some kind of physical blood flow problem like this that could be an un-diagnosed source of the issues. Thoracic outlet syndrome also tightens the neck and chest and can put pressure on nerves passing through the area and posture plays a big role in that. Forward posture, slouching and a forward head position will make it worse like when a person works at a computer with poor posture. Screen time for kids could be doing something like this and just tightening the front of the chest and neck. Posture and proper alignment of everything is so important to prevent problems. I've had a lot of vasovagal syncope in my life that I've overcome. I am a Mayo spine surgery patient. My story: https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
From Training and Rehabilitation:
Can idiopathic intracranial hypertension really be a mere postural problem? An American patient flew over to see me for his gradually increasing problems with confusion, blurry vision, impaired mental clarity, and fatigue.
The patient had several imaging studies done but were reported as normal. Upon examination, however, in the mediosagittal plane, depression of the pituitary gland was evident, as well as distention of the quadrigeminal and cerebellomedullary cisterns, indicative of increased CSF volume and intracranial hypertension.
A common cause of this is blockage of the jugular veins, which is usually visible on a normal capital MRI if one knows how to detect it. However, in this case both veins were perfectly patent and unobstructed. What, then, was causing the ICH?
Upon doppler ultrasonography, in contrast with the seemingly normal appearance on MRI, a low flow volume was demonstrated. Only 180 mL/min on the left side, and 250 on the right side. Normal volumes, especially for a grown man, are about 350mL/min.
Seoane (1999) first stated that cervical extension may obstruct the IJVs. However, craniocervical flexion may also obstruct the vein, as it draws the styloid process into the IJV (Dashti 2012, Larsen 2018c). In this case, we tried both, and what we found was that flow dramatically increased upon craniocervical flexion, and went from a dampened 180mL/min to 600 mL/min! The venous pressure was so high that the waveforms were artery-like, with a pulse, normalizing after a few minutes as the flow volume came down to about 450 mL/min, which is normal for a man 6 foot 3.
This was postural blockage of the internal jugular veins, with secondary intracranial hypertension. This case study is also a good example of why patients should lie with their normal cervical postures (e.g. with a small pillow to recreate the cervical "hinge") during imaging studies.
Hello, @maddoxsdad - just wanted to add my welcome to Mayo Clinic Connect. Glad that you are identifying with some symptoms you are reading about in this thread. Glad you finally got a diagnosis that made sense for you and your wife as you sought to determine what was going on with him. Congratulations on being such great advocates for your son.
You might check into the Mayo Clinic Adolescent Autonomic Dysfunction Clinic, if it's of interest https://www.mayoclinic.org/departments-centers/childrens-center/overview/specialty-groups/general-pediatric-adolescent-medicine/autonomic-dysfunction-clinic. There are a couple of interesting videos on that page that also may be of interest.
How is your son doing? How is your daughter?