If you have some time, please read my story. I have been suffering for over a year now, and am very worried that I am approaching an early death. It's very much appreciated!
In November of 2011, I began to have a slight pain in the left side of my neck. I weighed over 300 lbs and thought that it might be atherosclerosis, so I went to my PCP. I had been taking blood pressure medication (Azor 10/20MG). He prescribed some anti-inflammatory drugs and sent me on my way. I didn't take them.
Instead, I set off on a low-fat diet and bought an elliptical machine. By May of 2012, I had lost 50 lbs. A sports therapist had me start physical therapy for shoulder pain on the right side. He was surprised that when I lift my arms, my shoulders both pop every time - that was a bit disconcerting. I was waking up with my arms completely numb fairly often and it was quite frightening. I was (and still am) feeling like I'm losing control of my body, and my mind feels like it's slipping. My speech is not fluid anymore, I frequently have to pause and think of the words I want to use during a real-time discussion, whereas I have always prided myself on being well-spoken and a bit of a grammar "Nazi". I feel dumber, have trouble recalling and learning things, and feel like I'm on the downhill slide in only my mid-30s. I used to enjoy FPS video games, now I feel like they are mentally overwhelming and I need something with a slower pace. My typing has gotten a lot worse, and I have to backspace/fix things quite a bit. I thought low blood pressure might be the cause, so I spoke with my PCP again and he agreed that we should lower my Azor dose to 5/10mg, so it was lowered.
The 3rd week of May, I awoke one morning in atrial fibrillation, the most frightening thing I've ever experienced. When I got to the ER, they hooked me up to an EKG(?), and confirmed the AF. When the nurse put a stethoscope to my back and had me sit up and take deep breaths, it subsided and I was back in regular sinus rhythm. It has not recurred since. As a result of this, a regimen of testing was done - stress test, echocardiogram, sleep study, EMG, and CT scans of the brain and stem. No abnormalities were found, but I did sleep on my back during the sleep study because the cables made it difficult to roll over, I normally sleep on my sides or stomach with an arm or both above my head/under my pillow. The electrophysicist says if I start becoming symptomatic with AF again, he wants to do an ablation on my heart. My blood pressure was consistently low (not dangerously so, but low), so I quit the Azor completely and tried Lisinopril for a while.
By July I had lost another 15 lbs and was nearly down to 70 lbs, so I started telling everyone I had lost 70 lbs!

Went on a roadtrip, lost control of the diet and exercise, and at this point I've probably regained 20 lbs. I have weaned off the blood pressure medication completely, as I am concerned about the side effects of arrhythmia all of them have the potential to cause. However, I have noticed that my blood pressure does get moderately high from time to time, and I think I probably need to be back on at least a low dosage of something.
On to the TOS!
I think that November of 2011 may have been the early stages of TOS. When I exercise now, I feel a semi-sharp pain near my left collarbone. I frequently have pain in my neck on that side, which I've grown accustomed to. The whole neck area feels very tense. I have regular pain my shoulder and around the collarbone area, and can feel my pulse quite easily right at the left collarbone most of the time. Once, while I was propping myself up with my left arm on the bed, watching TV, I felt a surge of adrenaline and my body began shaking uncontrollably. This lasted for about 30 minutes and was pretty unnerving. I have become very sensitive to caffeine and sugar, and can no longer enjoy a daily cup of coffee. Every day is a crapshoot - never know if I'm going to feel OK for a while, if I don't then I just have to endure until I go to sleep that night, nervous what the morning could bring. I usually feel great directly after waking up, but when I get into the business of the day, things always start rolling downhill.
Thanks for reading, I hope someone out there can relate and hopefully answers are on the horizon.