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Found 10 results

  1. At first glance, Caryn is living an enviable kind of life: she is 56 years old, living in South Florida and is the Director of Imaging Services for a national radiology group. In the short time, I spent talking with Caryn, her positive disposition and tremendous strength were evident through all that she said. So, while she certainly seems to be living a great life, I suspect that not many people know how hard Caryn has fought to build this life or how much she continues to overcome to achieve it. At age fifty, she was diagnosed with neurocardiogenic syncope (NCS) after a harrowing medical battle that involved misdiagnosis, emergency surgery and nearly losing her life. Even more, all of this happened not long after she overcame thyroid cancer. Caryn’s syncope began in childhood. She regularly passed out at doctors’ offices and during anxiety-evoking experiences. She was diagnosed with epilepsy at age sixteen and was given anti-seizure medications. She continued for nearly three decades believing she had epilepsy. Then, in 2003, she was diagnosed with thyroid cancer. Her thyroid was removed, but cancer returned two years later. She recovered after a second major surgery and months of rehabilitation. By age 45, her cancer was in remission and she thought her battle with illness was mostly over. However, she discovered she was originally misdiagnosed with epilepsy during a routine neurology visit, and the physician proceeded to help her off the anti-seizure medications. She did not experience any seizures after that, though her syncope-related symptoms that began in childhood remained. In 2011, a particularly difficult syncope episode caused her heart to stop, which was followed by several more similar experiences. She had a pacemaker surgically implanted to stabilize her heart rate, but she felt severely ill shortly after the surgery. When she returned to the hospital, she found she had contracted MRSA accompanied by pulmonary embolisms, an infection in her heart and fluid in her lungs. Thankfully, she recovered after months of medical care and rehabilitation, but not without difficulties. She sensed the panic in the eyes of her physicians and family members during her battle with MRSA, and she knew she was near death. Even as she recovered, she feared losing her job as an MRI technician because she could not be around the equipment with a pacemaker. Her story began to turn when she saw a cardiologist who was able to diagnose her with NCS at the end of her first appointment. As he handed her a pamphlet about the condition, she could not believe that her extensive medical journey was culminating in a diagnosis that was “just that simple.” Caryn’s diagnosis was empowering because she finally had the knowledge to help herself cope. She has learned to prioritize activities that are important to her, like exercise. She knows she will be tired after workouts, and she now trains based on her heart rate. She did lose her job as an MRI technician, but this led her to build new dreams and now has a career she loves. She knows to talk herself through the particularly difficult moments and listens to her body when she needs to lay flat. Her experience of dysautonomia has taught her to live in the moment, and to use her own voice to take care of her needs. She has also learned to keep a small circle of support around her including family, friends and supportive colleagues. Now, with a diagnosis of NCS and her cancer in complete remission, Caryn reflected on her experiences: “I thought cancer was hard until this hit me.” Cancer is hard. Individuals who experience it are heroes in their own rights. But, Caryn’s comment made me think—what component(s) of her NCS experience made it harder than her cancer experience? Caryn shared that there was always the possibility that her cancer could be cured, that same possibility does not exist for NCS. She has to think about NCS every day, and every day she knows NCS will be with her tomorrow. As I continue to resonate on this point, I see that everyone’s experiences of illness, no matter the origin, are harrowing in their own way. But, one major dissonance I can see between the cancer community and the dysautonomia community is the level of awareness, research and education about the respective diseases. I hope the future brings a cure for cancer just as much as the next person, yet I also see the tremendous strides our society has achieved regarding cancer treatment and prevention over the last several decades. This type of relative success in the cancer community is motivating and inspiring. Perhaps one day, with continued efforts in awareness and education, dysautonomia will be better understood by the medical community and the general public, too. I hope such awareness and education will minimize the misdiagnoses, improper medication treatments and surgical complications experienced by many dysautonomia patients. Until then, we will continue to share the heroic and inspiring stories of individuals, like Caryn, to work toward that goal. From DINET: If you would like to be considered for a future Meet the Member article, please email webmaster@dinet.org Return to Table of Contents
  2. DINET member name: B.KELS Kelsey's home town: Los Angeles, CA Diagnosis: POTS/NCS Music video link: https://vimeo.com/224607332 My portfolio: https://bkelsstudio.cargocollective.com/ Notes on the project: My name is Kelsey Boncato and I am an LA-based visual artist living with POTS/NCS. My project is a music video I animated and directed for the electronic soul group, Idesia. The piece is entitled “Ain’t Over” This video was a collaborative effort. The Music Producer, Co-Director and writer of the music and lyrics to this song is Daniel Oldham. Daniel also lives a life strongly affected by dysautonomia. His younger sister has POTS and other underlying illnesses and was a strong influence on the creation of this song. The music and video to “Ain’t Over” evoke messages about finding strength within the state of being vulnerable and taking control of your path. The music, lyrics and animations work together to approach soulful and emotive tones that are minimal yet complex. This is highlighted throughout the piece, essentially producing its’ meditative essence. The lyrics were inspired by a multitude of events around the end of last year. Daniel’s sister was hospitalized again during the Christmas holiday, due to multiple complications. Since the song’s conception, it has provided a sense of hope and a reminder that even in knowing the difficulties life presents, we can continue to flourish. (Read the lyrics) More….. The song “Ain’t Over” is sung by Sophie Dimitroff, the lead singer for Idesia. Daniel also plays bass guitar on the song. All involved are USC graduates. Kelsey’s portfolio can be seen at https://bkelsstudio.cargocollective.com/ and more about Daniel can be seen at http://danieloldham.com/ For more about Idesia and to hear more of their music, visit http://idesiamusic.com/
  3. DINET member name: Missy Milton Missy's home town: Fayetteville, AR Diagnosis: Dysautonomia (POTS & NCS) website: https://www.melissamiltonart.com/ In Missy’s words……. Living with dysautonomia requires me to spend many chunks of hours laying down. Laying down is a necessary tool for regulating my roller coaster blood pressure. After about a year of spending so much time being “stuck horizontal” a dreadful, negative boredom ensued. I decided to start painting again as a fun way to pass the time when I can’t move about. Before my illness, It had been over 30 years since I had painted but it came back to me quickly. I use magnetized paint brushes and pencil on an ipad with an inexpensive (under $10) painting software. Creating digital art this way, instead of traditional paintings, keeps me from worrying about spilling paint on my bed or sofa. Nowadays, when I’m laying down I create artistically. I’ve started composing music recently and I just launched my website which includes my portfolio of art and a new blog. When I’m able to sit up and/or move about, I do more day-to-day things, such as water the plants or fold the laundry. The combination of the day-to-day activities and my creative projects, strikes a balance in my life which, for me, creates cheerful contentment. My body may malfunction in certain ways, but I feel whole. Sincerely, Missy Milton At left: "Night Flowers" Right "That time I found a fairy" More about Missy......Missy’s attitude towards her life and her illness are evident in this quote she sent in with her application Missy’s new website is her latest creation. It includes Missy’s art portfolio and her newly started blog. A blog that her adult children have encouraged her to write for a few years. It also includes a recording of her original music. Be sure to check out the great story she tells about her grandmother in the About Us section. Missy’s painting “Water Freedom”, featured here, is enjoying success in the 2017 Rare Artist Contest - a contest for artists with rare diseases. http://m.heyo.com/198fe2 Be sure to vote while you're there! Missy can be reached by email through her site at https://www.melissamiltonart.com/contact-1/
  4. Otherwise referred to: Neurally Mediated Syncope, Neurally Mediated Hypotension, Vasovagal Syncope This disorder is characterized by an episodic fall in blood pressure and/or heart rate that results in fainting (Robertson, 2002). The disorder occurs intermittently, with patients sometimes reporting good health between episodes. Our web site provides general information on NCS, and also explores its symptoms, mechanisms, diagnosis and treatment. A page full of links to other neurocardiogenic syncope resources on the Internet is included as well. To read more about neurocardiogenic syncope, click on the Articles link below. Reference Robertson, D. (2002, July). Drug therapy. National Dysautonomia Research Foundation Patient Conference. Washington, D.C.
  5. Dysautonomia means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies. Diagnosis frequently requires a specialist familiar with autonomic dysfunction and the various disorders that result. It is common for diagnosis to take a longer than many other disorders, however with the proper diagnostic testing the type of dysautonomia can be identified and effective treatment prescribed. DINET provides information , personal stories and articles written by patients about the types of dysautonomia, treatment and living with these chronic illnesses. This site focuses on the following types of dysautonomia; please note, these are not the only types or subtypes of the disorders described. Please explore the different categories under Information Resources to find out more about dysautonomia disorders. Postural Orthostatic Tachycardia Syndrome Often more simply referred to as postural tachycardia syndrome, or POTS, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. As such, POTS can be a difficult disorder to detect and understand. Our web site provides an overview of POTS and contains sections on symptoms, mechanisms, causes, tests, myths, links and research. There are also sections with information on what may help or hinder POTS patients. To read more about postural orthostatic tachycardia syndrome, explore the POTS category in our Information Resource section. Neurocardiogenic Syncope (NCS) Sometimes referred to as neurally mediated syncope or vasovagal syncope, this disorder is characterized by an episodic fall in blood pressure and/or heart rate that results in fainting (Robertson, 2002). The disorder occurs intermittently, with patients sometimes reporting good health between episodes. Our web site provides general information on NCS, and also explores its symptoms, mechanisms, diagnosis and treatment. A page full of links to other neurocardiogenic syncope resources on the Internet is included as well. To read more about neurocardiogenic syncope, explore the NCS category in the Information Resources section. Pure Autonomic Failure (PAF) A degenerative disease of the peripheral nervous system characterized by a marked fall in blood pressure upon standing (orthostatic hypotension). The orthostatic hypotension leads to symptoms associated with cerebral hypoperfusion, such as dizziness, fainting, visual disturbances and neck pain (Mathias, Mallipeddi & Bleasdale-Barr, 1999). Other symptoms such as chest pain, fatigue and sexual dysfunction may also occur. Symptoms are worse when standing and are sometimes relieved by sitting or lying flat. Our web site provides a page full of links to pure autonomic failure resources on the Internet. Multiple System Atrophy/Shy-Drager Syndrome (MSA) A degenerative disease of the central nervous system, MSA usually becomes apparent when one is in their fifties or sixties. Genitourinary dysfunction, impotence, headache, neck pain, dimming of vision, frequent yawning, orthostatic hypotension, gait disorder, sleep disorders and hoarseness may occur with multiple system atrophy (Polinsky, 1996). Loss of sweating, rectal incontinence, iris atrophy, external ocular palsies (paralysis of eye muscles), rigidity, tremor, fasciculations and wasting of distal muscles may also occur (Rehman, 2001). Loss of balance, difficulty moving, loss of fine motor skills, muscle aches and pains, changes (decline) in facial expressions, difficulty chewing or swallowing and a mild decline in intellectual function are among other symptoms patients may experience. (MEDLINEPlus, 2003, Multiple System Atrophy). MSA is a very serious form of dysautonomia that can be fatal. Our website provides a page full of links to multiple system atrophy resources on the Internet. References 1. Mathias, C. J., Mallipeddi, R. and Bleasdale-Barr, K. (1999). Symptoms associated with orthostatic hypotension in pure autonomic failure and multiple system atrophy. Journal of Neurology, 246, (10), 893-898. 2. MEDLINEPlus Heath Information. (2003). Multiple System Atrophy. Retrieved September 8, 2003 from: http://www.nlm.nih.gov/medlineplus/ency/article/000757.htm 3. Polinsky, R. J. (1996). Multiple system atrophy and Shy-Drager syndrome. In Robertson, P. A. Low & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 222). San Diego, CA: Academic Press. 4. Rehman H. U. (2001). Multiple system atrophy. Postgraduate Medical Journal. 77, (908), 379-382. 5. Robertson, D. (2002, July). Drug therapy. National Dysautonomia Research Foundation Patient Conference. Washington, D.C.
  6. Please keep in mind that recent clinical findings will not be included in earlier publications... Cheltenham Syncope Clinic: http://www.syncope.co.uk/ Vasovagal Syncope in 2016: The Current State of the Faint, Dr. Raj et al http://www.openaccessjournals.com/articles/vasovagal-syncope-in-2016-the-current-state-of-the-faint.html All that shakes is not epilepsy YM Hart Consultant Neurologist, Royal Victoria Infirmary, Newcastle upon Tyne, UK http://www.rcpe.ac.uk/journal/issue/journal_42_2/hart.pdf Syncope (NMS) in Adolescents by Martin A. G. Lewin: http://hpps.kbsplit.hr/hpps-2003/pdf/10.pdf Neurally Mediated Syncope by Munir Zaqqa, MD and Ali Massumi, MD, FACC: http://www.pubmedcentral.gov/articlerender.fcgi?tool=pmcentrez&artid=101078 The Elusive Pathophysiology of Neurally Mediated Syncope by Rogelio Mosqueda-Garcia, Raffaello Furlan, Jens Tank and Roxana Fernandez-Violante: http://circ.ahajournals.org/cgi/content/full/102/23/2898 Cardiovascular Causes of Falls by Brian J. Carey and John F. Potter: http://ageing.oxfordjournals.org/cgi/reprint/30/suppl_4/19.pdf Mechanisms Cerebral Vasoconstriction in Vasovagal Syncope: Any Link With Symptoms? by Alfonso Lagi, Simone Cencetti, Vanni Corsoni, Dimitrios Georgiadis and Stefano Bacalli: http://circ.ahajournals.org/cgi/content/full/104/22/2694 Treatment Randomised Clinical Trials of Drug Therapy for Vasovagal Syncope by M. Brignole http://www.escardio.org/communities/councils/ccp/e-journal/volume2/Pages/vol2no27.aspx Pacemaker for Vasovagal Syncope: Good for Few by M. Brignole: http://www.escardio.org/communities/councils/ccp/e-journal/volume2/pages/vol2_no23.aspx Management of Recurrent Vasovagal Syncope by Means of Isometric Counterpressure Manoeuvres by M. Brignole: http://www.escardio.org/communities/councils/ccp/e-journal/volume2/Pages/Vol2_no12.aspx Neurocardiogenic Syncope Due to Recurrent Tonsillar Carcinoma: Successful Treatment by Dual Chamber Cardiac Pacing with Rate Hysteresis by Yue A. M., and Thomas, R. D.: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11877927&dopt=Abstract Usefulness of a Tilt Training Program for the Prevention of Refractory Neurocardiogenic Syncope in Adolescents: A Controlled Study byEnrico Di Girolamo, Cesare Di Iorio, Luigi Leonzio, Panfilo Sabatini and Antonio Barsotti: http://circ.ahajournals.org/cgi/content/full/100/17/1798 Beta-Blockers no Better than Placebo in the Treatment of Vasovagal Syncope: http://www.jfponline.com/Pages.asp?AID=1341 The Usefulness of Tilt Testing with an Intravenous Beta-Blocker in Assessing the Efficacy of Long-Term Therapy in Patients with Vasovagal Syncope byGrzegorz Gielerak, Karol Makowski, Ewa Dłużniewska, Alicja Stec and Marian Cholewa: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14560324&dopt=Abstract
  7. I am glad I did it but it was horrible in my case, I have IST and NCS, with convulsions he said my bp was unreadable on the auto cuff but when he took it manually it was 60/30 he said it was all over the place along with my heartrate. He said my autonomic system is very out of whack, he moved me up to 0.4 mg a day of florinef. And plans for other meds if this doesn't work. He also said after I get insurance I have to get treatment for my digestion issues, and neuropathy. I don't want to go into it but that was the worst thing ever, the EP was shocked at how my hr and bp did. He was so interested in all that happened, I had horrible convulsions right before passing out. I pray I never have to do that again but am glad I went through with it. And I asked him why its not pots since it spiked above 30bpm, he said that they overlap but I have primary ist with pots, he said it wasn't the high rate but the dramatic fluctuations in all positions, that is worst in my case. It went up to 180, and fluxed between brady and tachy in all positions, no wonder I feel like crap at all times. I am so glad I finally know, he said that this isn't causing my neuropathy though, he thinks I need to go to vandy. He says it needs more testing but that this with my history is not a mild case of dysautonomia like the doc first thought. So definitely have support now, this is so encouraging.
  8. So, i keep reading each one...... i read ncs, and it sounds like me. I read dys and it sounds like me. I read mcad and it sounds like me. I read cfs and it sounds like me. BUT THEY ALL HAVE MOSTLY THE SAME SYMPTOMS!!!! Agh!!! Is there any read difference between these??? in mechanisms? in symptoms that could be told apart from the other??? thanks tennille
  9. Hello all, When I was diagnosed with dysautonomia they said I had NCS. I logged my BP and HR yesterday 4 times. Supine - 119/61 Hr- 40 (8am) standing- 85/48 Hr- 85 Supine- 126/62 Hr- 42 (12pm) standing- 89/55 Hr- 83 Supine- 109/61 Hr- 56 (4:30p) Standing- 88/53 Hr- 88 Supine- 97/53 Hr- 50 (9:30p) standing- 86/52 Hr- 86 So i understand that with NCS you faint because when you stand your BP and HR drop. Except my Hr is spiking anywhere from 32 bpm- 45 bpm upon standing. I did it today at 8am and 12p just to check to see if it was the same and it was. So my BP is dropping but my Hr is raising, and I read it can't be POTS if it drops more than 20/10 which on more than one occasion mine does, more on the SYS than the DIA. and with NCS your Hr is supposed to drop with your Bp when standing, and mine doesn't my Hr raises and BP decreases. so what is this? oh and ETA- this is a good day, before starting Florinef, salt, fluid, and waist high compression stockings my HR would go from 40bpm sitting to 116bpm upon standing and steadily climb so it has brought it down some. I know there are many types of dysautonomias but the only one I have found that does this is PAF but i'm not going there until I get insurance and a doc tells me that. but I would like your take on this if no one minds. i also was told I have SVT along with CVI and a bunch of stomach and temp and other issues if that helps.. another thing is that sometimes when i sit my Hr will drop to 40, but then there are times i could be sitting nothing bothering me and not watching anything stimulating or anything and my Hr jump to 95, and then there are times like once last nite i was sitting and my hr was 48 i stood up and it stayed at 48 no matter what i did to try to get it to go up it wouldn't so i just went to bed. so lol I have a Hr that just does whatever it wants- may be too low or too high sitting or standing. lol so any insight. and don't worry i am not just self diagnosing I just don't know when or if this insurance is going to be approved, and I would like to understand this a little better and i see there are some very well researched people on here. (some of you have already helped me some) so thank you bunches
  10. Has there been any studies linking NCS or POTS to ADHD or ADD? My 13 year old son has been diagnosed with NCS, but I think it may be POTS. The doctor treating him said the two terms are almost interchangeable, but I have read different. My issue is that he also has other issues including migraine headaches, frequent nausea and vomiting, and ADHD (more ADD). He is having a lot of problems with attention and concentration at school. I am trying to get help from his school, but they have to do their "testing" before he can qualify. Does anybody know if there is a link between these issues that can support my effort to get help for my son in school?
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