Question: I am 45 yrs old and have been having bizarre symptoms for the past 5 months. It started out with sudden onset of eye pain (like someone was tugging at my eye from behind). That progressed to severe daily headaches like a vice around my head and temples and very sinus pressure feeling. I went to ENT and he gave me decongestants and flonase and nothing really worked. This lasted on and off for a few months, tapering off to just a vague pressure feeling. Then in the past month or so, I started to get an "adrenaline" feeling in my chest when I was trying to fall asleep. Eventually it progressed from my chest to my head, and then I developed insomnia from it. On nights I was able to sleep, I would wake up feeling like I was fainting. (Ive always had some sleep paralysis, type issues, but this felt different -truly like passing out). Then I developed a very alarming and persistent occipital headache. Like a clenching or cramping feeling. It started to come on with waves of head pressure rushes and extreme ear pain. I was hospitalized and had several brain MRI and MRAs all negative. FUll body CT scan showed some calcified mediastinal lymph nodes. Pheochromocytoma negative. Ultimately, doctors said migraines. Then after I was released, I started getting waves of dizziness with arrhythmia, accelerating heatbeat for about 20 seconds and a heavy angina pain and then it would go away and return 20 to 30 minutes later (this happened all night and was very scary). (I had a mitral valve repair 5 yrs ago so I am familiar with palpitations - this was not regular palps). My dr. put me on Klonopin but on some nights I still have extreme insomnia where I am unable to sleep at all because the minute I lay down, I get the head rushes and ear and head pressure, or when I start drifting off I get the back of the head headache, tingly gums various body aches. Am I not getting oxygen to my brain? Im so worried. So now I am sleeping upright if I can even do that. My eye dr said he thought he saw some optic nerve blurred margin (MRI was okay though). Maybe psuedotumor cerebri but my body type is very small. My neuro is at a loss and feels maybe its some form of sleep apnea? But I am not even really sleeping yet when the symptoms start. So of course I did the bad thing and started googling and am convinced I have multiple system atrophy/Shy drager b/c of blood pressure issues and head/neck pain. I do not have orthostatic hypotension on standing but I do have very low blood pressure when I lay flat (I tend to run low anyway) and my pressure rises a bit with heartrate when standing but still within normal limits and no dizziness or other ortho symptoms. I have also had this pressure feeling during the day and my blood pressure is normal so I don't feel like the head pressure is directly related to that. I must say that the Klonopin has eased some of the head and neck pain but still so worried! My neuro does not think Shy Drager, but I am concerned b/c it seems that my autonomic nervous system (blood pressure, sleep, heart rhythm) has been hijacked. I am still trying to run/workout and do not really perceive any deficits there and no breathing issues while exercising. I will say that I do have a low ANA positive which is being worked through the rheumy now and in the past I had high anticardiolipin antibodies and Lyme Disease. I have also had episodes in the past of the paresthesias, joint paint at night but this headrush/headache with sleep onset is new and so scary. I am hung up on Shy Drager because I read it features sleep apnea, headaches and neck pain. I do not have any of the balance or parkinson signs although am now convincing myself that the neck pain and joint aches are from Parkinsons. I guess I am looking for some reassurance. I can actually palpate my occipital glands and they ache. Could it be tension? Autoimmune? Perimenopause? Anxiety? Stress? Ive never had such a lingering issue and the insomnia is killing me. The eye dr is going to do a visual field test and the neuro is considering a lumbar puncture. When I turn my neck certain ways or even burp I can feel my ear pressure. Its even greater when going over hills in the car. Its like my fluids are off. Could it be CSF? Im terrified its some neuromuscular thing that is brewing. Help, does it sound like how Multiple System Atrophy would present?

Thank you I appreciate your timely answer. I do have a follow up. We are going thru cardiovascular holter monitor and 24 hr blood pressure monitoring and soon autonomic testing. One of the things that has been suggested is POTS syndrome. When I lay down for a period of time I have extremely low blood pressure. So my numbers begin very low - 88/54 Pulse 79. Then if I get up fast (without sitting in between) my numbers jump to 96/68 Pulse 93. Then subsequent readings in the next 20 minutes standing included 96/74 Pulse 95; 98/75 Pulse 101; 94/78 Pulse 104; 96/76 Pulse 103. So basically I have this initial massive increase and then it sort of normalizes. Is that normal or not? From sitting to standing I don't have that giant leap, but I do when I go from laying flat to directly standing. This is esepcially so in the morning, where I wake up with low blood pressure and low pulse rate (60). It seems sort of unfair to not expect it to my BP and heart rate to not leap up to a higher number after sleeping for 8 hours. So I will go from say 80/58 pulse 60 get out of bed, then it will shoot up to a normal number 100/70 pulse 90, but then it all normalizes after that into a consistent pattern. None of the numbers are hypertensive either. So can one have orthostatic HYPERtension when the numbers are all within normal range? I don't seem to have any symptoms while standing except this all day head pressure/neck ache which doesn't seem to be related to postural changes. Also if I do happen to have POTS is that common to for POTS to develop into a more serious (multiple system atrophy) situation. Sorry, for coming back around to it, I can't get the worst out of my mind yet. Just trying to get a handle on this before the autonomic testing starts.