DYSAUTONOMIA (AUTONOMIC DYSFUNCTION) COMMUNITY
Please Help me Someone!

Please Help me Someone!

This all started in late july I was riding my bike and got very dizzy and heart was pounding and couldnt catch my breath this lasted about 10 minutes and then everytime I went surfing it would happen again as soon as I got out of the water. I went to the ER about 8 times from august 7 to september 20th including one overnight to monitor my heart and run blood work since then I have had a echocardiogram and a stress test 2 chest xrays and an abdominal xray plus many labs. I was put on meds however things have only gotten worse I feel like my body is shutting down everyday. I get bouts of dizzyness and feeling like im going to faint everyday. My lower spine not muscle but spine has been hurting everyday for 2 months plus every evening my left buttock starts to ache like someone kicked me there and aches till I fall alseep. I get a pulse that goes up and down all day anywhere from 65 to around 100bpm. I sometimes get short of breath or feel like I cant breathe and for the past month and half I get horrible insomnia EVERY NIGHT. I fall asleep around 2am and toss and turn falling alseep for short periods and waking up in between with my body aching. I finally get out of bed around 7 or 8 am and I feel awful all day everyday. I also have become pale and look very sickly my eyes look sunken and many more wrinkles around them and my skin looks blanched and not the pinkish healthy color it did almost 4 months ago. I feel in my heart that its much more than anxiety and I dont think they understand how really ill im feeling everyday and my constantly changing heart rate. I often feel like an ache where my heart is too like the ache you get when you hold your breath too long. . meds they have tried celexa buspar trazadone ativan depakote and vistiril the only thing that has helped is trazadone is helping me sleep a little better.  For your info they say the labs come back fine everytime but are labs alone enough to be 100% positive nothing is wrong??
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Due to the feelings like you are going to faint, the other test that might be recommended to rule out what wouldn't be covered by tests they've already run would be a Tilt Table Test.  This may give more insight into the near-fainting sensation you're getting.  These are usually given by EP-cardiologists (electrophysiologists) or, less commonly, by neurologists; with your set of symptoms, I would recommend an EP-cardio.  The test is generally only available at major teaching hospital, so you'll need to seek out one in your area (i.e. may not be your closest hospital) if you try to get this test.

The other thing to consider pursuing would be a sleep study if you haven't already had one, particularly as you mention insomnia and not getting terribly much sleep at night.  A sleep disorder can cause or exacerbate symptoms as well.  

Welcome to our community,
Heiferly.
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Did they check your ferritin and iron levels, with your feelings of faintness and lack of healthy skin color?  Low iron, even if your CBC is coming up normal, can cause some symptoms I believe, because I had POTS symptoms worse when this was the case for me.  

Did your oxygenation level come back okay with the finger monitor?  

Did you do anything that may have injured your back?  

The heart rates you mention are all within the accepted normal range.  And too, it is normal for the heart to fluctuate up and down based on activities and feelings.  You mention an echocardiogram and stress test, but have they run a 48 hour event holtor monitor on you, to look at your rhythm for a longer length of time, where you do activities such as bike riding or surfing?  Have they done any pulmonary function testing on you?  

Did they take orthostatic blood pressure and pulses on you (laying, sitting, standing)?  If so, with what results?  If not, if you get a home blood pressure cuff (if you don't have one already)- Omron has a strong reputation for a brand of one, you could conduct the orthostatic test yourself.  If you'd like to, may I recommend, first, lay down for ten minutes, take your BP and pulse?  Then sit up for one to two minutes and take it again.  Then stand for one to two minutes and take it again.  Let us know results?

They do need to be careful to not overlook any possible medical cause for your symptoms.  But know too that anxiety and panic can cause a lot of very real physical symptoms, such as difficulty falling asleep, difficulty breathing, heart racing, pain from muscle tension, and lack of sleep can affect the way your eyes look and you can get achy without proper rest in a comfortable bed.  Feeling dizzy and faint can also result from anxiety, however, especially if you are having headaches a long with it that are new, they shouldn't overlook a scan of your brain.  My grandfather had a doctor relegate his headaches (he even passed out) to a psychiatric cause, but it was learned he had a brain tumor the size of a lemon.  

Poor posture and improper lifting amongst other things can cause pain in the spine.   But since the pain began over two months ago and has been going on so long, you might ask your doctor if they would order an MRI of your spine, if they feel it's warranted based on physical exam and your reported symptoms.  
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I would also suggest a tilt table test and the EPS. I have also had symptoms like that. One day when I was riding my bike home I had shortness of breath and my heart was pounding, I passed out in the middle of a busy street. Fortunately my friend was there and he saved my life.
Best luck,
Katy
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