POTS solved--due to artery spasms -- GET TESTED!

[AnnHasPots]

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

 

[bombsh3ll]

That's really interesting Ann, I'm glad you've found your cause.  My POTS began acutely after a very forceful valsalva - trying to blow up a waterbomb which I thought was a balloon - so i have often wondered if the raised ICP from this caused some kind of cerebral vascular event. I have had 2 normal brain MRIs though - but yours didn't show up with this? 

I have thought of getting a cerebral MR angiogram and venogram - I am in the UK though and have to pay privately for such tests. 

What is the treatment now you know what you have?

B x 

[AnnHasPots]

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.


 

[Terri]

This is so interesting. Do you actually feel the spasms? What are the triggers for you? When you say bad attacks do you mean hr/bp issues? What medication do you take to stop the attacks? What other tests did they offer to see the brain damaged area? Did you or do you have a lot of head pressure? Who is your neurologist? Sorry for all of the questions but your story is so compelling to what I’m experiencing.

Thanks for sharing.....

[AnnHasPots]

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
 

[Terri]

Thank you for all the above information. I have yet to find any neurologist interested enough to dig into my situation. Confirmed TTT but someone needs to get that its got something to do with my arteries just like you. I can feel when they ignite and then an episode comes on. Around here as long as the mri/mra and cat scan are ok they look no further. I need to find a private neurologist I guess? I emailed you thru the message board in hopes that you’ll share your neurologists name. We would travel to get a good one.

Thanks again for sharing your journey.

[Guest KiminOrlando]

To add to the conversation about doctors, in my experience, most are never sick. They couldn't be to excel in college, then med school, then the grueling schedule of residency. They can't comprehend a life of constant medical problems that alters the trajectory of your life. Unless their family is touched by chronic illness, they just don't get it. My best doctor was an OB/GYN whose sister, an attorney, had lupus and had to quit her job because of it. 

[Terri]

You are so right Kim....same with people in general, not just doctors. They dont get it unless they have a good friend or family member struggling with a chronic issue. And in all honesty before this all hit I wouldn’t of gotten it either. If you dont have cancer or heart disease you’re not in the forefront of what people consider “health problems”. I was on a cardiac floor for 3 days last summer and many of the medica staff mentioned I’m the healthiest sick person on the floor. Perfect labs etc. 

[bombsh3ll]

I am ashamed to say this now as a doctor myself, but I probably wouldn't have (initially) believed someone either who presented with my symptoms, all normal tests etc had it not happened to me. I would like to think I would have been open minded enough to listen and look into it rather than dismissing them though. There are still a lot of hypochondriacs, chancers and malingerers in the world but a big red flag is when a previously completely fit and healthy person who never visited doctors suddenly becomes incapacitated. 

[Terri]

That is so true bombsh3ll. I had a friend that was at the doctors every other week with some obscure illness she thought she had from googling her symptoms. I was an extremely fit runner, maybe went to the doctors 4 or 5 times for something other than OBGYN checkups in 20 years. Luckily was with the same GP for all that time so he new something was very wrong. Just didn’t know what. I got my diagnosis’s for the dysautonomia faster than some because mine was from a neck/back of head injury so it came on fast and furious. Unfortunately I just keep getting one problem after another and I know there’s more to it but I cant get a neurologist that wants to dig deeper. Blah...it stinks...and I’m tired of trying. I feel like until you blow a blood vessel and have a traumatic event they just dont care.

[Lynne]

This discussion has really helped me!  Now I am going to explore the linkages between heart rate problems, orthostatic intolerance, hormones, and ovarian cysts.  We we will definitely circle back to a knowledgeable cardiologist. My daughter had an escalation and acute event in Sept. 2016 that my husband and I felt presented like a stroke.  She had a whole host of symptoms including dizziness and balance and she didn't talk for 3 days.  It was preceded by several months of migraines.  She had a non contrast MRI and they ruled out stoke.  When she continued to have a lot of cognitive problems a few months later we got a contrast MRI that was normal.  We have been seeing a bunch of specialists with no success in diagnosing the root cause of her many, many symptoms.  I really appreciate all the information you provided.

[m@t]

Interesting posts. My symptoms started with a series of migraines in 2014. I only ever get the visual aura and never any pain with it. I still get the odd one now where I sit there for an hour unable to see anything.

 

I have often wondered if there was something structural that caused a change but wasnt picked up on the MRI or MRA. Kind of the only reason I can think of going from an atheletic life style to struggling to walk around the garden in a short period of time.

[AmeliaAnn]

I’m new to this forum, so hopefully it’s ok if I chime in. I haven’t posted anywhere else yet, but happened to see this post and was hoping to find out how you are being treated now that you’ve been diagnosed, nitroglycerin? Aspirin? I’ve always felt POTS was brought on by a stroke or heart attack for me. I had two very traumatic events that doctors completely wrote off as anxiety, but the entire left side of my body went heavy, numb and I lost the use of my left arm for a time. They ruled out stroke by MRI, but I’m not convinced. After a cardiac work-up I was diagnosed via TTT. 

I do have cervical issues found on the MRI, and I have constant pain in my neck and back of my head. I feel like the left side of my body is heavier than my right daily.  So, I’m really interested in how you are being treated. I also get strange cramping sensations in my chest and I have no idea whether or not it’s angina or something else. The cardiologist and neurologist I see have not been very helpful, I don’t think junk they want anything to do with it, so I’m hoping to travel to a specialist. 

I was an athlete before all of this. Healthy, active and I’m trying to make a comeback, but I end up in bed every time. It’s completely derailed my life. I wish I would have found this forum sooner!!! Thank you for such great information!

 

 

[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.