Tired of being sick
Senior Member
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- Western PA USA
Tuesday 11/4/14 at 2:57 PM
I am very interested to learn how many of you have POTS with CFS/ME.
The claim is that 25% to 50% of CFS/ME sufferers have POTS.
This POLL is also to get an idea on actual awareness as well
I am very interested to learn how many of you have POTS with CFS/ME.
The claim is that 25% to 50% of CFS/ME sufferers have POTS.
This POLL is also to get an idea on actual awareness as well
Tuesday 11/4/14 at 3:34 PM
POTS is pretty simple to diagnose in my opinion.
In fact, I diagnosed myself(as I did with all of my official diagnoses) before I was officially diagnosed with POTS by a cardiologist.
However,as always,(in at least all of my experiences with doctors) when you "know too much" about your condition,it seems to rub doctors the wrong way
and they will quickly dismiss you out of narcissistic behavior.
In simpler words, they will not treat you and will ignore all facts you place in front of them.
Now,
Back to the topic.
All you need is a blood pressure/pulse home model machine. Omron is the most accurate, IMO.
1. lay in the supine position on your bed for around 10 minutes relaxing then take your blood pressure/pulse
and record it.keep the sleeve/cuff attached.
2.immediately stand up right after step 1 and take your blood pressure/pulse as many times as the machine will keep up during the 10 minute required time for the diagnosis of POTS AKA "poor man's tilt table test.
*Note if you are a fainter have someone there who can catch you from falling if you pass out*
If your heart rate/pulse increases 30 beats per minute over your recorded supine heart rate/pulse or goes over 120 beats per minute
You have POTS.It is simple as that..
What does the blood pressure reading mean during this test?
The only role your Blood pressure plays in this test is to determine what type of POTS
1.If your blood pressure continues to drop below 90/60 during the test you have the Neurally Mediated type of POTS or hypotension
AKA low blood pressure.
*This is the form that you will pass out on if you pass out*
2.If your blood pressure continues to rise above 140/90 during the test you have the Hyperadrenergic type of POTS
AKA high blood pressure.
3. if your blood pressure does not change enough to be considered high or low by world standards during the test,which are below 90/60 for low blood pressure or over 140/90 for high blood pressure.
This means you have the unaffected blood pressure type of POTS.
4. if you have the 1,2 and 3 type of POTS and Neurally Mediated Hypotension as I do,you are pretty much screwed as to getting pharmaceutical help! This is the rarest form of POTS and OI and by my calculations, since I'm a man, we make up only 15%
of all known types of cases combined ..As I have this rarest type of POTS, there are only around 15k to 25k cases including myself in the US..Saline IV is the only way to treat this type
I have not yet to find any information on this type to even give it proper name!!
I am by no means a doctor.
I'm just a concerned man who had to do my own research in order to find the proper help or in simpler words,
I am basically my own primary care physician.
Friday 11/7/14 at 3:27 PM
Since this poll is going exactly the way I suspected,this tells me a great deal.
POTS and neurally mediated hypotension most likely plays a larger role in CFS/ME than what is being and originally suggested/suspected.
What does POTS and neurally mediated hypotension have in common?
Low blood volume/flow problems.
1.since 46% of the participating CFS/ME members have POTS
2.And 13% of the participating CFS/ME members have Neurally Mediated Hypotension
3.18% of the participating CFS/ME members suspect POTS which is pretty much a shoe in since the majority CFS/ME sufferers have to diagnose themselves before becoming official.(as I was one)
4. And finally there are 10% of the remaining participating CFS/ME members who have not educated themselves enough on the subject yet(as I was one), who more likely than not have POTS or Neurally Mediated Hypotension..
It is possible that 80% of CFS/ME sufferers could have POTS,Neurally Mediated Hypotension
or at least Low blood volume/flow problems of other orthostatic control issues.
This needs to be heavily investigated..
Friday 11/7/14 at 3:40 PM
So after I have exhausted all of these vascular tests(below) I will be a great deal more educated on this issue
and hopefully will be able to help all of you all out........
I am basically "my own PCP" so I get just about every lab test/MRI/CT scan/sonar/xray ETC that I suspect,
eventually, out of sheer persistence..
Right now I am working on getting every vascular screening test known to man TO GET TO THE BOTTOM OF EVERY BLOOD FLOW/VOLUME PROBLEMS I HAVE ASSOCIATED WITH POTS.
Such as:
Vascular Disease Screening and Prevention - New York ...
Carotid Duplex: This ultrasound procedure can detect carotid artery disease – blood clots, plaque build up, and other blood flow problems in the carotid arteries – early, before it causes any symptoms. When the disease is detected early vascular specialists can perform procedures that are effective in preventing stroke.
Aorta Ultrasound Scan: An aorta ultrasound exam can diagnose aneurysms that develop in the abdominal aorta, and is used to follow patients who have undergone procedures including aortic endograft and aortic open repair aneurysm.
Arterial Duplex Imaging: Using this high-frequency ultrasound test vascular specialists can visualize the arteries in the legs and the velocity and direction of blood flow in those arteries.
Treadmill Exercise Testing for Claudication: Doctors use treadmill testing to detect peripheral artery disease in patients who have pain in their lower limbs (claudication). During a treadmill test they can evaluate how exercise affects ankle-level blood pressure and analyze the relationship between claudication and vascular function.
Digital Photoplethysmography (PPG) with Thermal Measurement: Digital photoplethysmography (PPG) is an imaging test used to detect changes in blood flow at the microvascular level in the fingers and toes in people with Raynauds disease.
Ankle Brachial Index (ABI) with Pulse Volume Recordings (PVR): Doctors use these tests to measure blood flow and detect arterial blockages in the arms and legs. Together the tests help determine the presence, severity, and location of peripheral arterial occlusive disease.
Renal Artery Duplex Scanning: This imaging test evaluates blood-flow velocity and patterns in the aorta and renal arteries to help diagnose and locate blockages in the vessels and damage to the kidneys from chronically poor blood flow.
Dialysis Access Evaluation: This ultrasound exam helps vascular specialists map veins and determine which can be used for hemodialysis access.
Thoracic Outlet Obstruction Evaluation: Doctors use a combination of imaging studies including chest x rays, CT scans (in some cases with 3-dimensional reconstruction to show compression of the structures at the thoracic outlet), angiography and venography, MRI, ultrasonography, electromyography (EMG), and nerve conduction studies to diagnose thoracic outlets obstructions and determine the most effective treatment.
Vein Mapping for Arterial Bypass: Before performing surgery to perform a bypass, surgeons use preoperative ultrasound imaging to determine which vein segments might be used for bypass grafts.
Venous Ultrasound Scan of the Upper and Lower Extremities: This ultrasound exam shows blood flowing through blood vessels and can be used to detect deep vein thrombosis (DVT) and superficial vein thrombosis (SVT).
Diagnostic Tools and Technology
Diagnostic Angiography: Angiography is a type of imaging test that allows doctors to view blood vessels throughout the body and diagnose blockages, enlargements, clots, and malformations. An angiogram to study the arteries is called an arteriogram; one to study the veins is called a venogram.
CT Scans: A computed tomography (CT or CAT) scan is a noninvasive imaging test in which computers combine special x-ray images to produce cross-sectional images of internal organs, bone, soft tissue and blood vessels, allowing radiologists to diagnose vascular problems.
TeraRecon/Aquarius: This new technology allows vascular specialists who are planning an endovascular stent graft repair of an aortic aneurysm to create and analyze a three-dimensional reconstruction of a computed tomography angiogram. These images help ensure proper sizing and placement of the graft.
MRI: Magnetic resonance imaging (MRI) uses a powerful magnetic field, radio frequency pulses, and a computer to produce detailed pictures of organs, soft tissues, bone and virtually all other internal body structures. Detailed MR images allow physicians to better evaluate various parts of the body and certain diseases that may not be assessed adequately with other imaging methods such as x-ray, ultrasound or computed tomography (also called CT or CAT scanning).
Zeego: Specialists at NewYork-Presbyterian now use a new vascular imaging system (Zeego) that employs X-ray technology to image blood vessels. This angiography system allows doctors to move a C-shaped arm to almost any position around the patient, and to visualize internal organs from all sides.
Dyna CT: This new system allows vascular specialists to create CT-like images of soft tissue, and enables them to differentiate between normal and abnormal tissue to visualize, for example, brain tissue and intracranial hemorrhages.
Saturday 11/8/14 at 8:03 PM
I made a huge mistake by not selecting the "Display votes publicly" option when creating this poll..
Sunday 11/9/14 at 1:01 PM
IMO
The only way POTS(primary) can be treated or cured through exercise is if POTS was brought on by deconditioning or prolonged bed rest..
This is common sense.......
POTS(secondary) can never be cured since it was brought on by an underlying illness...
This is common sense as well..........
Sunday 11/9/14 at 1:15 PM
I was pretty confused of what Neurally Mediated Hypotension was and was cross defining it with Neurally Mediated POTS..
Neurally Mediated Hypotension has nothing to do with Neurally Mediated POTS
for the fact the illness lacks Tachycardia........
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