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superior vena cava syncrome Head Fullness Please help!
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superior vena cava syncrome Head Fullness Please help!

I have read many symtoms (symptoms) of SVCS and wonder if I may have something subtle like this condition, I know it is a longshot, but maybe there is something else you can think of to help me?   For 3 years I've had a headache/head pressure/head fullness present 24/7 regardless of position,,, and vertigo in the supine postion only.   I have also had dry nasal swelling and/or severe turbinate swelling on a continuious basis, with no sign of infection or allergy.  In the last 4 months I have developed chronic chest pressure (not worse with exercise), as well as some breathlessness and feeling my airway might be narrowing,  I also have been having tachycardia at night waking up gasping for air.   A cardiac monitor confirmed a pulse of 160 in my sleep and I'm awaiting a cardiology appt.   I also have this "nauseating energy" that comes and goes and I get mental confusion very easy during fast paced or complex tasks, even if they are familiar activities, this is worse during the nauseating energy.  This nauseating energy tends to surge during tachycardia.  I feel very sensitive to anything that releases adreneline.  My pulse goes crazy at the least disturbance or adreneline release, especially during periods of nauseating energy.     Also I had a very disturbing episode where my blood pressure was about 50/40 for almost one minute after a 15-minute cardiovascular workout.  Typically my BP runs in the 105/65 range, which scares me away from this 10 mg inderal, im scared to take it, but I don't know.   I have had MRI of the brain, Chest xray, Echo, basic labs, cardiac enzymes, D-dimer...these have all been normal, can you make any suggestions please?
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I am very familiar with superior vena cava syndrome. I originally presented with SVCS in 1983 when diagnosed with massive Non-Hodgkins Lymphoma tumor in my chest.  In 2005 I self diagnosed SVCS and had to go to major cardiovascular surgeon in Boston for confirmation.  The local surgeon was unable to locate a 95% obstruction + thrombus near my heart after three venoplasties.  I was discharged, accused of wanting drugs.  My Boston surgeon confirmed SVCS based on the physiological tests he performed in office: lying flat, raise feet, head and neck fills, face gets flushed, pressure in head measurably increased.  Any arm activity results in same... terrible time washing my hair, doing dishes, bending over to tie shoes, folding laundry.  

I have no accompanying tachycardia, though I did have a pacemaker placed prior to diagnosis of SVCS for severe sick sinus syndrome.  (the pacer leads just exacerbated chronic vein fibrosis from high dose chemo and huge tumor compression 25 years ago.) And initially, I also awoke in the night with this panicky "GET OUT OF BED, GET UP NOW!" sensation.  

I've had to learn to live with the symptoms, as the pacer leads cannot be moved because of the vein issues... I go to Boston for svc venoplasty once or twice a year... he spent eight hours doing venoplasty on my subclavian (which was scarred and occluded) last year, in the hopes of addressing chronic crushing chest pain, and was able to place two stents, but no reduction of symptoms or pain.  

I take aspirin, Nattokinase (rather than coumadin), and flax oil, and go to Boston when symptoms become unbearable.  Most people do really well following venoplasty or stent.  I'd find a cardiovascular specialist who may have seen this before if I were you... it is rare, and they would also have the skills to sort through your symptoms in relation to the heart issues, too.  

Good luck.  
Katrina
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