AnnHasPots

One side being numb is a symptom of a medullary stroke. The medulla is also the place that helps with orthostasis (your body adjusting to standing). Did you ever do a follow-up MRI? Some strokes won't show on the initial MRI, but will on a follow-up. Women can have microvascular angina which doesn't show up on most heart tests. Look into it, and find a doctor that can test you for it. There is no cure for my condition, but it is better to know you have a life-threatening disease than not to.

I don't physically feel the spasm; I feel the symptoms they cause. With my heart, I get typical angina symptoms. With my head, I get stroke symptoms which differ based on the area that is lacking blood--but recognizable patterns of stroke. The brainstem controls consciousness, vision, balance, heart rate, blood pressure, swallowing-- so many things. So a bad attack might be losing my vision completely or losing consciousness. Nitroglycerin is used to dilate arteries for all angina patients and it works for brain spasms too. If you have a stroke, there are always clinical signs of the brain damage. Follow your symptoms and see specialists. Research the tests and ask for them to be done. Get a neurological examination. If you are having eye problems, see an ophthalmologist and test the nerve. If you are having ear problems, do likewise. If one side is weaker than the other, see a physiotherapist to have it measured. If you are having balance problems, go to a balance center where they have dozens of accurate tests and machines. When you get enough abnormal results that mimic a specific type of stroke--you'll have your answer. Most doctors are ignorant. They go to school (say in '83) and learn the latest and greatest, and then they start practicing but they don't always have time to keep up with the latest research in their specific fields let alone all the advances and research in all the fields. So their knowledge is never up-to-date. Then you add in personal biases, and well, the care we get is adequate at best. Medical mistakes are the third leading cause of death in the US. Doctors are so valuable and they do save lives, but mistakes are rampant. Most doctors don't recognize that MRIs regularly miss strokes, but the research is clear and indisputable. Younger doctors have less experience, but more familiarity with current medical knowledge. The two qualities I look for in a doctor (hard to find, but worth it) are humility and an open mind. Humble doctors recognize that they are fallible and lacking in knowledge and will truly listen to their patients. Open-minded doctors are willing to take in new information (even from patients!) and don't let their biases get in the way of patient care. I did have head pressure (awful headaches) for the first year whenever I was upright. Aspirin helped the pain more than other pain relievers which was a red flag in itself. Heart patients with spasms (variant angina) have been studied and people have different triggers for attacks, but some commonalities are: exercise, stress, emotions, being cold, hormone change. Being upright is my biggest trigger for "POTS" symptoms, but how much I can be upright before triggering symptoms varies. Variant angina also appears in clusters--some days/months are worse than others. On a good day, I would pass a neurology exam with flying colors and on a bad day, I would fail the same exam miserably. You have to follow your specific symptoms to solve the mystery. Try to get as many objective medical tests as you can (like a tilt table test) because it's harder for bad doctors to ignore your symptoms. A good doctor will change his opinion when they see clear evidence of abnormality, but don't be surprised if a bad doctor doesn't. They are suffering from confirmation bias which we all have sometimes, and those same doctors are the ones that are responsible for most of the medical mistakes leading to death in this country. Run, don't walk when you meet one. Bias is a real problem in the medical field. Look at this study of stroke patients: "Women were 33 percent more likely to be misdiagnosed and minorities were 20 to 30 percent more likely to be misdiagnosed, suggesting gender and racial disparities may play a role." https://www.hopkinsmedicine.org/news/media/releases/er_doctors_commonly_miss_more_strokes_among_women_minorities_and_younger_patients

1/3 of posterior circulating strokes don't show up on MRI. The brain damage can be seen with other tests depending on the area damaged. There isn't a cure, but I know exactly what triggers spasms, and how serious they are, and I have medicine to stop bad attacks like loss of consciousness.

Have they ruled out Brugada or heart arrhythmias?

A lot of you are describing getting headaches when you are upright or with head movement. I have a POTS diagnosis (heart rate increase on TTT), but the headaches and POTS are symptoms of not getting enough blood flow to the brain due to artery spasms. This is something to rule out with a transcranial doppler because it can lead to strokes. My headaches responded well to Asprin and not other pain medicines (and now, I know why).

Red hands could be a sign of Reynaud's disease which is artery spasms in the hand. You can get spasms in your heart and brain as well. Have the doctors verified your head is getting good blood flow (ultrasound, and transcranial doppler) and checked you for thoracic outlet syndrome, and variant angina (which can be difficult to diagnose). What exactly causes your symptoms? Keep a log and narrow it down. I have POTS because I have artery spasms. Definitely, rule it out.

I used to have horrible headaches whenever I was upright or moved my head. It turned out I was having arteries spasm in my brain reducing my blood flow, which caused my brain to send the signal to my heart to make it beat faster (POTS). Blood flow issues can be diagnosed with a transcranial doppler. It's something to rule out. Maybe do a headache journal. Figure out what triggers them. Food? Exercise? Emotions? Being upright? Moving your head? Touching your neck?

I do. I have spasms in my heart and in my brainstem which is the direct cause of my POTS and dysautonomia. Diagnosed with trans-cranial doppler.

My symptoms started when I was working out with my trainer--the dizziness, fainting, headaches, blurred vision, and so on. They came and went until after an extremely painful headache, they became permanent. My symptoms happened when I was upright for too long (standing or walking), or when I moved my head. The more I did, the worse they got. Like many of you, I had years of ineffectual doctor visits until I was diagnosed with POTS after a tilt table test. At the same time, extensive testing found brain damage in the balance areas of my brain (vestibular organs). I learned that POTS was often secondary to another disease, so I kept looking for answers. I had learned on my own that POTS symptoms are similar to vertebrobasilar insufficiency and that it probably meant something that my POTS symptoms were relieved when I took a nitroglycerin for heart pain. Despite telling a dozen different doctors my thoughts, I was always told it was just POTS or anxiety because a young female can't have vertebrobasilar insufficiency with clean arteries. Then I met a brilliant neurologist who listened and decided we couldn't rule it out until we tested it. For me, simply tilting my head backward caused a serious loss of blood flow to my brain on the transcranial doppler and I was promptly diagnosed. Those early attacks--TIAs. That horrible headache--a brainstem stroke that destroyed my vestibular function but didn't show up on MRI (1/3 of brainstem strokes don't!) Brainstem strokes can also cause autonomic dysfunction. The source: spasms or closure of the arteries in the brain. When the brain sees that it needs more blood, it tells the heart to beat faster, thus you get POTS. So, I had a stroke with obvious brain damage and symptoms that clinically matched a specific condition that could explain it and a dozen doctors didn't bother to test me for it because I was a young female with clean arteries. Remember POTS is often a symptom of something else. So keep digging. Despite cardiovascular disease being the #1 killer of women (10x more likely than breast cancer) and despite more women dying each year of heart disease than men, most doctors are only familiar with male symptoms and so women are frequently misdiagnosed. Only recently have researchers began to study women with heart disease and they are finding large differences in both symptoms and causes. Spasms in small arteries rarely show up in EKG, but heart disease with spasms is common in women. If you have chest pain along with POTS, and you haven't seen a cardiologist who is familiar with the latest research in women's heart disease (most aren't) then you haven't ruled out heart disease. In one study, 46% of women who had a heart attack had no chest pain so not having chest pain doesn't mean you aren't having heart problems. If you are prone to spasms in the heart (whether you feel them or not), you might be getting spasms in the brain too. You may have had a brainstem stroke and been misdiagnosed. Do the research on your particular symptoms and find doctors who are up to date with current medical knowledge and can give you the tests necessary to diagnose. Most of all: trust your gut. Find the courage to disagree with well-respected medical doctors when their conclusions disagree with what you know to be true in your heart. Medical mistakes are the third leading cause of death in the US. I trusted myself and kept digging, and I probably saved my life. :-) https://www.theatlantic.com/health/archive/2015/10/heart-disease-women/412495/ https://www.health.harvard.edu/newsweek/New-view-of-heart-disease-in-women.h tm http://www.everydayebm.org/case-based-learning/2016/5/3/no-guarantees-mri-imaging-in-the-diagnosis-of-acute-posterior-stroke http://www.strokeassociation.org/STROKEORG/StrokeConnectionMagazine/ReadSCNow/Uncommon-Causes-of-Stroke_UCM_461424_Article.jsp#.Wkq5PlS7-EI

Reading my medical file, I noticed that I used Polytrim eye drops before POTS began, and again later, right before my POTS symptoms got worse. This is probably coincidence, but I thought I would see if anyone else has noticed this? Polytrim is used to treat inflammation/infection of eyes (maybe due to allergies, but not known).

I've read that it's common for doctors to misdiagnose POTS patients with anxiety. I think it's just common for doctors to misdiagnose. That's why medical errors are the sixth leading cause of death in the US. I guess that's why it's better to have your friends disbelieve you, rather than your doctors!

I don't have a thick neck or sleep apnea. Neck MRI shows reversal of the normal lordosis (curvature of neck is messed up) and some slight degeneration. I had a viral infection before POTS started too, so...

http://www.scholarpedia.org/article/File:Autonomic_nervous_system_main_figure_Blessing.gif If you look at the picture, you can see that the neck maps directly to autonomic control of the blood vessels in the brain, the pupils, the heart, and the lungs. Here is my theory, tell me if it makes any sense. My theory is that an irritation of the superior cervical ganglion would cause blood vessel to constrict in the brain (not enough blood going to the brain!!) and cause pupils to dilate (doctors have commented that my pupils are so large!) While an irritation of the stellate ganglion could trigger tachycardia, as well as fast breathing. People actually get a nerve block here to get rid of tachycardia, so the association is well known. The superior cervical ganglion and stellate ganglion are both part of the sympathetic nervous system, and the body uses the parasympathetic system to oppose them. The vagus nerve is part of the parasympathetic system and triggering it (deep breaths, bending neck to chest, coughing, bearing down) will cause the heart to slow down. This is a trick I use to feel better when the tachycardia hits. It resumes, of course, but I can battle it this way. All of these nerves are in the neck. So, an irritation of these neck nerves (due to pure dysfunction/auto-inflammatory/physical causes) on assuming an upright posture might trigger this effect. See, where I'm going....

I think my neck is somehow at the root of my POTS. Anyone else notice a connection? If I hyperextend my neck, I get super POTSY. All my symptoms started with my extending my neck while working out with my trainer. I may be susceptible to dysautonomy, but it seems to be exasperated by neck position. I have a theory that when I'm upright, my head position on my neck changes and this is what triggers my arrhythmia. I know some people have found success with cranial osteopaths, and I'm wondering if it's because the head/neck position was changed? Obviously, POTS can be triggered by different things, so it doesn't explain everyone's symptoms. Anyone see a connection here with their neck? I found this, "Symptoms of dyspnea and cardiac arrhythmia and drop attacks may have a cervical spinal origin. Dyspnea can be related to a deficit in C3-C5 innervation of the diaphragm. Cardiac palpitations and tachycardia secondary to cervical spine pathology can be differentiated from those associated with other causes by the fact that these symptoms are associated with unusual positions or hyperextension of the neck. This is caused by irritation of C4 innervation of the diaphragm and pericardium, or by irritation of the cardiac sympathetic nerve supply. Drop attacks suggest posterior circulation insufficiency, resulting in an abrupt loss of proprioception without loss of consciousness." Source: https://www.inkling.com/read/kelleys-textbook-of-rheumatology-firestein-budd-gabriel-mcinnes-odell-9th/chapter-45/clinical-features

In one way, I'm lucky because my family and friends all support me and get how debilitating this disease is. My best friends nicknamed me "Gimpy" and they are always there to catch me if I fall, and support me when I walk. They can tell how bad a day is just by looking at me (I have severe bilateral vestibulopathy on top of POTS, so I lose the ability to walk/stand when it's bad). They see me on good and bad days, so they really get it. I've had to spend parties just lying flat on the kitchen floor, but I always have a friend come and sit by me. I crack a lot of jokes about it, like when we walked by an ambulance, I was like, "Hey! There's my ride!" On the other hand, I've faced most of the disbelief from doctors. They really don't seem to have a clue about this disease, and have little idea how awful it is. Maybe it's because they only see me on good days? I once had an ER doctor suggest the dizziness/presyncope was all in my head and prescribe me antidepressants. That was before I was diagnosed with everything, but I still remember feeling so letdown by the medical establishment. I'm glad I trusted my gut and pursued testing. Just because you look young and healthy, doesn't mean you are!