Dysautonomia (Autonomic Dysfunction) Community
dysautonomia?
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dysautonomia?

For about two years now, my GP and several specialist have been trying to figure out what is wrong with me. I have daily severe chest pains (pressure, almost always following standing up from a sitting or flat position), fatigue, tired leggs, light headedness and stomach troubles as delayed gass emptying and acid reflux. I have had several ECG's, stress tests, stomach medicines, but none seem to resolve in an answer or solution.

Triggers that increase chest pains etc: laying in the sun / hot weather, taking a bath/shower, after excersie (especially weight lifting excersises). The chest pains (98% of the cases) happen when I stand up after sitting or lying for a X moment. I have these pains everyday and some periods are worse in the extent and amount of chest pains.

What I did notice was: when I sit or lay down for a while and I stand up, someting strange happens to my Heart rate:


in lying or sitting position: 55 bpm, after about 5/15 second after standing, my heart rate goes to 120 followed (about 10/20 seconds later) by a rapid decrease in heart rate as low as 55 bpm before it start to increase to 75/80 again.

This, in combination with the triggers and symptoms made me wonder if it is possible to be dysautnomia? Is this possible and does anybody experience the same symptoms that can relate or explain what is wrong? My GP does not know where to look anymore and is at the point of saying: start excepting it.. But I can't just do this, not when it affects my daily life so much. I'm having these pains about 10 to 20 times a day and the light headedness is driving me mad.

P.S. My GP does not think that anxiety is the problem, that he knows for sure he always tells me.

Thank you in advance.
4 Comments Post a Comment
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612876_tn?1355518095
The short answer to your questions is that yes, these do sound like common symptoms of dysautonomia, and you need to have specific testing to rule various autonomic conditions in or out. The main test that is needed is a head-up tilt table test (often abbreviated as TTT or HUTT test). In order to get the testing needed, you're going to need to see either a neurologist or a cardiologist (particularly a cardiologist who specializes in electrophysiology). Is it possible for you to get a referral to a specialist from your GP?
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I have had similar symptoms as you describe. Sometimes they are severe happening multiple times a day. At others I can go months without the pressure in my chest and head feeling upon standing. I am here looking for answers. It started 4 years ago when I found myself exhausted all the time. I was having such a hard time breathing, then I noticed a very fast heart rate, especially when I got up in the morning. I was hospitalized and placed on telemetry. I had a holter monitor, echo, stress test, blood work, photochromic trona testing, etc... In the end, an electrophysiologist told me I have IST (inappropriate sinus tachycardia). I was given a low dose beta blocker and sent home. I didn't take the medication bc I was hoping to try something more natural. I couldn't come to terms with the fact that I was 24 and on anti hypertensives. Anyways I became pregnant and my symptoms persisted. Throughout my pregnancy I was regularly followed my a cardiologist and electrophysiologist. My heart kept checking it fine. After the birth of my son, I felt worse, with symptoms of increased heart rate upon the slightest movement. I felt fine when I was laying down. They decided to do another holter. The electroplhysiiologist told me my heart rate is no longer high in my sleep and throughout the day. Instead I had the high heart rate with standing and moving and in my sleep I would go as low as 37. I began to look for answers online and I kept coming across POTS. My doctors didn't have much insight to these autonomic disorders. I just gave up and even began to believe it to be anxiety related. My son is now 3 and a half and I have symptoms Tha wax and wane. I haven't seen a cardiologist or any doctor for this matter since 3 years ago. More recently, I have noticed the chest pains that last a few seconds upon standing, with squatting, lifting, strong emotions, and hot baths. Also, my heart rate seems to always be over 110. I noticed I get an increase in my hear rate and shortness of breath after meals. . I just adjust to it, but the chest pains are what scare me. It scares me so much. So I decided to go and see a cardiologist again. They are running their same old tests, while I'm here looking for answers. Dr. Just told me based on my synptoms that I seem like I have a "sensitivity to epinephrine." Anybody else with the chest pains? I have yet to receive a diagnosis, but I feel like I have some type of dysautonomoa based on what I have read. I'm planning on seeing a muerto with interest in dysautonomoas after cardiology clears me. Hope you find the answers your looking for too.
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Avatar_f_tn
Pheochromocytoma* Numerologist*
Sorry for all the spell errors. This autocorrect drives me insane!
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612876_tn?1355518095
I'm sorry to hear of your symptoms. I can personally relate to just about everything you describe ... including having doctors who don't seem to know much about autonomic conditions. I definitely get chest pains with my tachycardia (fast heart rate), and have been inpatient hospitalized for 10 days once while they tried to figure out the source of the pain, with no real findings. Test after test is negative. So, I guess that's the good news: that what you are experiencing is "normal" for people with autonomic issues and you're not alone.

I do think you would benefit from finding a specialist more knowledgable in this field. Hypersensitivity to catecholamines (like epinephrine) can be part of an autonomic disorder, as can everything else you describe. You've done very well researching your own symptoms, something I know is not easy, and your next task is to search out a knowledgable doctor who can help you. I hope that the neuro you're scheduled with after cardiology finishes with you is the right person! If that doesn't work out, let me know, and I will try to help you find someone else.

Best, H.
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