[Submitted by a Lakewood Choleh] As a doctor or health professional, please learn about this condition and don’t misdiagnose your patients. Watch the video and follow the links at the end of the email. Never tell your patient they are just having a panic attack or anxiety. Too many people have this syndromes are misdiagnosed because Dr’s missed it or focused too much on their own little world.
I had to hear ablation I should never have has. I was misdiagnosed because my doctir electrophsiologist , the top specialist, was too focused on his expertise that he missed all the other symptoms that should have told him that it was not a simple Arthmia AVERT issue. His experience and knowledge should have told him it was dangerous to do an ablation, not only the 1st time but especially the second time.
Being the fact that I could not handle beta blockers, and that I triggered tachycardia from eating (digesting) as well as issues with my eyes ,as well as issues of bending and standing right up, issues of chronic fatigue syndrome, mitral valve prolapse, he should have sent me for neurological testing and never suggested to do an ablation. But surgeons are surgeons.. ( or in my case a cold-blooded butcher). The day after the first ablation when I started walking in the hospital hall I had shortness of breath and was not feeling well. I could not stand and walk. That was a sign that he should have ordered a tilt table, but he failed. He instead sent me off as needing psychological intervention due to anxiety. Boy was that a lot of fun.
This doctor knew well from Dr. Low of the Mayo Clinic of medic Reports as early as 2001 stating that patients with autonomic dysfunction should not have ablations as they get worse. In fact Dr. Blair Grubb, an electrophsiologist and expert in pots of University of Toledo Hospital (as well as others), clearly authored a report that people with autonomic dysfunction should not have AVNRT Ablations as they get worse.
My tachycardia was not tachycardia, it was autonomic dysfunction. The doctor may have an excuse the first time, but why did he miss the many signs the second time and blinded by his stellar “reputation” to suggest a second AVNRT abaltion.
I suffer today physically, emotionally and financially while he has not apologized or compensated me for his grave mistakes which he knows clearly is a blemish on his career. Yet he is not a human being to apologize. He is arrogant and left me on my own instead of helping me once he knew that I was facing a long lifetime battle – especially after I sent him the GI test for gastric emptying which showed possible autonomic dysfunction.
Originally he told me I would get better in 3-6 month and later he told me give it 5-10 years. He knew well I needed to seek medical help but all he told me was take salt and drink water. He left me there to suffer.
Please don’t wash off your patients with telling them they are having a panic attack or sudden anxiety. Learn the symptoms and refer them ONLY to a neurologist or cardiologist experienced with autonomic dysfunction.
Too many people are misdiagnosed, mistreated and told for many years that they have mental issues. It’s compared to people who suffer from chronic heart failure. We look healthy, from the outside.
You can look up these websites for more info or Google, pots, autonomic dysfunction and dysautonomia.
Www.dinet.org
http://www.
Www.dinetinc.com
You can contact the Choleh via email [email protected].
Thank you so much for the informative video. I know a family that has several children with this condition as it is an inheritable disorder. It is very costly for the family because of the medical care needed.
Dystonomia – autonomic dysfunction- is an umbrella of conditions. There are some conditions that affect young children that are inheritable disorder. The neurologically affect the bodies function- hence autonomic dysfunction
The ones we are discussing are like POTS – those that are triggered by a virus, medical procedure, trauma. These are children, tenns, men and mostly women who were full functioning people and suddenly stricken with the condition.
It is critical that we start watching our food intake.
Doctors are clueless. If only they had known…
food take is crucial. one of the things that has helped me with this condition was to go Gluten Free as its easier on the Digestive System and that causes less blood pooling.
If possible Swimming is vital as one is not Calvert and there is not much gravity pull in water especially when swimming. (Problem is to find a volunteer to take you and be in the pool with you- waiting 5 years to find someone). If one does not exercise the nerves continue to deteriorate. The problem is if one pushes their “limit” (what ever that may be) they can trigger an episode of tachycardia (heart racing and blood pressure going up or down). A walk down the street if possibile, or changing a position from laying down to sitting up, or just after a meal.. or by someone startling the person, change in the atmosphere – barometric pressure is lousy.
Try going off sugar, salt, caffeine, alcohol, spicey foods and the like. Stick to healthy proteins and carbs.
Long term (months and even years of) healthy eating habits stabalizes the body and gives forth tremendous energy.
when a person has POts they have to eat salt…
Hashem should help you through your journey to a full healthy happy full filling long life!