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Dysautonomia (Autonomic Dysfunction) Community
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5502728 tn?1376370886

I think I fall under POTS.

  I had a holter monitor placed on me for a couple days a few weeks ago.  The heart doctor said they found tachyardia and that my heart rate was very fast.  It fluxuated between 50 and 200 bpm throughout the day.  The doctor put me on metoprolol and topomax for head pressure I was having.  I did not respond well to either.  Metoprolol made me feel very slow and uncomfortable in my chest.  The topomax did not really do anything for the head pressure which was worse in the morning and evenings.  I also got another Mri of the brain and everything seems to be intact.  But I have a lot of trouble in the mornings, not every morning but most.  So more recently I started taking blood pressure readings while I was in bed once I woke up in the mornings.  The readings where fine I consistently get on average roughly 110/65 as BP and heart rate is in 50's to lower 60's.  So then I took my bp as I stood up from the bed and consistently I got around 110-120/80-90 but the heart rate was always in the 100's bpm and a high reading of 132 bpm just from standing up.  It was a difference of 75 bpm from the laying position.  So I kept track of these readings so I could show my primary doctor.  

When I went to see him I showed him the pressures I had recorded and he seemed a little excited (We have been at this a while).  He had just went to a convention where they talked about POTS and he said he thought it was a good fit for what I had.  He had been thinking about this for me and showed me some sites on his computer and that I needed to research it more too.  I agreed with him that it did look interesting.  I got home and found the wikipedia page for it and I was suprised to see all the symptoms I had listed.  What really was key for me was the symptom of pooling blood.  That is exactly how I think about was it feels like in the morning.  Like blood pools in my body and in my head and adds pressure.  Then when you stand up it is like a drain and a stress on your circulatory system.

There are other things that make me think it fits the bill.  In high school I was a very good athlete and a distance runner.  I could run all day long and I have run thousands of miles.  But toward the end of high school I was having trouble running long distances.    That was 13 years ago and now I can hardly jog for a few minutes, maybe 10 minutes if I jog lightly.  I steadily have diminished in the amount of exercise I can endure.  But I still try. At the same time when these symptoms first started I noticed a visual disturbance which I later found out was visual snow.  It was just a curiosity then.  Now I have all kinds of visual disturbances like wavy lights that seem to flow toward the center of my vision, visual snow, and dark blotchy flashes with my pulse (I see my pulse).  I also have trouble reading and thinking at times, especially in the morning it is difficult to even form thoughts-there is too much pressure I just sit there with my mouth open staring into space in pain.  

So I wake up in pain.  Sometimes it is better not to eat anything for hours after I wake.  I often have alot of acid with even a litte food.  I have noticed that more recently it hurts to eat large meals.  There is a sharp pain in the chest as the food goes down and a fullness that stops me in my tracks.  I used to easily eat a burger and fries but now everytime I do those last bites are noticable.  It seems that the more motion I get in the better I feel.  But it is a challenge to get going and it is at times very painful.

Right now I do not work.  I do a little side work when I feel up to it.  Woodworking kind of things and I have a few hours a week coming up working at a college but I do not know if I will last the semester.  

This is getting to be long, but I have a few questions:

1.)Does the source of POTS have to relate to autonomic dysfunciton?  It seems like these problems could also be the result of a pressure directly applied to the circulatory system from a physical source.  Like an injury to the spine and chest cavity that is difficult to detect (I was also in a car crash around the time the symptoms started).  I ask this because I have been diagnosed with TOS and I know that can be caused by the ribs pinching arteries in the thoracic outlet. On the wikipedia page for POTS there is mention of not being able to raise the arms over the head which is the main method to determine TOS.  So how much of it is POTS or TOS I do not know.  But I am pretty certain I have TOS because I have played guitar for over ten years almost daily and my arms and shoulders will hurt when I play and this has become gradually worse over time.  I eventually had to give it up.  It can be difficult and painful to keep my arms above my head for a prolonged amount of time.

2.) How serious is it?  Have people died from this?  From my own perspective, it seems like it would be possible to die from this condition.

I guess that's it for now.  Thanks for your help.
3 Responses
875426 tn?1325532016
P.O.T.S. is a form of dysfunction of the autonomic nervous system.   Your lying down versus standing numbers look like it's quite possible you have P.O.T.S..   The doctors are still learning about the pathophysiology of the disorder, I believe.

Did they rule out with your 200 reading a different kind of tachycardia other than sinus, such as supraventricular (SVT), for example?

Blood typically pools in the lower extremities with P.O.T.S. with the intolerance to being in an upright position- I don't believe it also pools in the head.

You say you are waking up with a headache- morning headaches might come if you had tachycardia while sleeping, such as SVT or I.S.T. (inappropriate sinus tachycardia).  It might also come if you have sleep apnea- have you been tested for this?  It might also come with a TMJ problem if you are clenching and or grinding your teeth in your sleep.  Do you do this?  Also, if you have a musculoskeletal issue, like with your neck, you might awaken with a headache- do you have any issues with your neck?  

Regarding the visual disturbance, have you spoken with a neurologist about that and your headaches and ruled out migraines, such as the classic migraine, which can come with a visual aura?  With a pulsating headache, it sounds like migraine.  Sometimes, a defective blood vessel can be repaired and help a migraine, though in my case, I didn't have one.  I have common migraines.  I believe migraines can also be a symptom of dysautonomia.    

Have you also ruled out Chiari malformation via a brain MRI, which can cause rapid heart rate and headache?

Have you ruled out iron deficiency with a blood iron panel (that sort of anemia can cause tachycardia and headache)?  

Regarding your gastrointestinal symptoms, while dysfunction can happen with someone with dysautonomia, have you had a gastroenterologist do an E.G.D., maybe with a Bravo capsule to measure the ph level in your esophagus to see if you've got acid reflux going on there?  Have they looked for any strictures, etc.?  

Has a GI doctor measured your gastrin level, which is what triggers acid production in the stomach?  Bloating can potentially indicate a gallbladder problem- has that been ruled out?

The reason a person with P.O.T.S. doesn't want to raise their arms over their head too much is because the vision can start to go with the way the circulation is.  I've had my vision go mostly white or start to go gray.

Typically, they don't consider P.O.T.S. life threatening, however if your pulse is going extremely fast, faster than what a maximum heart rate goal with exercise would be, for example, I think there could be a danger of going into a dangerous arrhythmia.  

Has your primary care doctor started any kind of treatment for your symptoms?
5502728 tn?1376370886
Thanks for responding LIH.  Sorry I'm so late to reply.

"Did they rule out with your 200 reading a different kind of tachycardia other than sinus, such as supraventricular (SVT), for example?"

I am not sure what kind of tachycardia the cardiologist said I had when I talked to my primary doctor he just referred to it as tachycardia.  But I faguely remember the cardiologist being more specific about it.  

"Blood typically pools in the lower extremities with P.O.T.S. with the intolerance to being in an upright position- I don't believe it also pools in the head. "

Almost every morning when I wake up I have head pressure almost like my head is heavy.  I do not know with what, fluid or blood.  But its worse in the morning after I have laid down all night.  I have alot of trouble sleeping.  My chest often hurts and head feels pressurized.  Like blood is getting traped in it.  I can usually only lie on my back for a while because of chest discomfort.  I end up sleeping on my chest after alot of maneuvering.  I always wake up with very puffy eyes, really swollen, when I have head pressure in the morning.  So this adds to the idea that there is some kind of pressure going on.  My eyes will be swollen for a few hours and then they will look more normal.  

"You say you are waking up with a headache- morning headaches might come if you had tachycardia while sleeping, such as SVT or I.S.T. (inappropriate sinus tachycardia).  It might also come if you have sleep apnea- have you been tested for this?  It might also come with a TMJ problem if you are clenching and or grinding your teeth in your sleep.  Do you do this?  Also, if you have a musculoskeletal issue, like with your neck, you might awaken with a headache- do you have any issues with your neck?  "

I have been tested for sleep apnea and everything was fine.  I am pretty sure I am not grinding my teeth or doing anything abnormal when I sleep.  I often wake up at night from chest pain or discomfort and I never have noticed anything like grinding teeth.  I do not have any issues with my neck unless it is related to the TOS.  But my neck itself does not seem to me to be the source of my pain.  I usually have discomfortable burning sensations on my spine that also are along the neck.  But I have burning sensations in different areas on my body to varying degrees.  But there is a spot on my spine that kind of hurts a little more than the rest of my spine and it is about 4-5 inches below the base of my neck.  It looks like it coincides with fairly sharp bend in the spine in my x-ray.  I think the doctor said I had scoliosis of 6 degrees (which doesn't sound like much).

"Regarding the visual disturbance, have you spoken with a neurologist about that and your headaches and ruled out migraines, such as the classic migraine, which can come with a visual aura?  With a pulsating headache, it sounds like migraine.  Sometimes, a defective blood vessel can be repaired and help a migraine, though in my case, I didn't have one.  I have common migraines.  I believe migraines can also be a symptom of dysautonomia."

I have seen a neurologist but it has been many years.  I remember that it was real important to them to clean the wax out of my ears because that could be throwing things out of wack.  I wore a device that had a bunch of wires electroded onto my head.  I guess it was like a holter monitor for my brain.  I did not have the kind of head pressure I do now back then.  But I did have all the visual distortions.  I do not think I have common migraines the way I understand them.  The pressure is pretty much daily, but not like a headache.  It does not pulsate, but is fairly constant.  I have definitely thought about the possibility of migraines with aura, and if I am correct there can even be a migraine where you do not have the headache but do have the visual distortion.  But from what I have seen and read my visual distortion is not the same as for migraine.  The visual snow is not for sure.  The almost moire like pattern of lights that flows to the center of my vision maybe I am not sure.   Like I said I have been at this a long time, over a decade, and not all the symptoms I have now I had in the beggining.  It definitely has gotten progressively worse.  And I can't be sure if what problems I am having now are the consequences of not finding the source of the original problems I had years ago.    

"Have you also ruled out Chiari malformation via a brain MRI, which can cause rapid heart rate and headache?"

I am not certain that they check for that in an MRI.  I just had another MRI done.  But it came back negative for MS, there were no lesions.  I am not sure what else they checked for.  But that is interesting.

"Have you ruled out iron deficiency with a blood iron panel (that sort of anemia can cause tachycardia and headache)? "

I do think I was checked for this.  I think the iron came back a little low but not that much and I started taking a vitamin for it. But no change in symptoms.  

"Regarding your gastrointestinal symptoms, while dysfunction can happen with someone with dysautonomia, have you had a gastroenterologist do an E.G.D., maybe with a Bravo capsule to measure the ph level in your esophagus to see if you've got acid reflux going on there?  Have they looked for any strictures, etc.?  "

Yes I have been told I have acid reflux.  Been put on nexium and tried over the counter stuff.  But the best thing I feel is just to drink water when I get acidy and not to eat to early in the morning or to close to bedtime.  I went to an Ear Nose and Throat doctor a while back and he stuck a fiber optic cable down my throat and said everything looked okay.  So I do not know.  My primary doctor had an interesting theory that the esophagus itself can get twisted and this can cause all sorts of problems.  There is a specific test for this but we had a cat scan of the chest done instead so we could check the chest too.  Everything came back fine.  

  "The reason a person with P.O.T.S. doesn't want to raise their arms over their head too much is because the vision can start to go with the way the circulation is.  I've had my vision go mostly white or start to go gray. "

I don't think I have this problem.  But my arms do go numb and pinprickly when above my head.  The longer they are up there the worse it is.  I tried some physical therapy for a couple months and I got nothing.  I try to have good posture when I am sitting and I stay away from the guitar.  My alternative could be to get a surgery done, but the specialist said that alot of my problems are not typical of people with thoracic outlet syndrome.  Like chest pain and head pressure and such problems.  It mostly effects the arms alone.  I do not think all my symptoms could be caused by TOS either and neither does my primary doctor.  

"Has your primary care doctor started any kind of treatment for your symptoms? "

No new treatments.  He prescribed me with midodrine to see if anything changes.  He put me on 2.5 mg twice a day.  A suppose this is pretty low dosage.  But I think it is better to error on the side of caution.  Anyway I haven't noticed any significant changes and I have been on it for three days now.  Sometimes I could think it was helping and sometimes it could be hurting.  So it really is unclear to me if there is any effect as of now.

The closest thing to a diagnosis has been for TOS.  And the closest thing to a non-medicine treatment has been physical therapy.  I have tried many medications for many different things in the past.  I've even been on high blood pressure medication when I was younger.  Nothing really has helped.    
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875426 tn?1325532016
I don't come on every day myself.  :0)

I hope you can get a copy of the medical records that show what kind of tachycardia, particularly with that 200 number.

At first with your response, I was thinking of the pressure I feel in my own head at times, but you mention puffy eyes.  One of the times I get pressure, I believe it is because my blood vessels are dilated from heat and my heart is beating hard and fast especially when I stand.  The other time can be after my main meal of the day and the heart is working hard on digesting.  

I remember hearing that the heart has to work the hardest when a person is lying down.  You are perhaps the first I've ever heard of speaking of swollen eyes in relationship to their dysautonomia- it makes me think of fluid retention, sinus congestion, or something.  Dysautonomia can be so mysterious.  Did you say the cardiologist did an echocardiogram on you?

Do you have sinus issues?  That can cause headaches too.   And chest discomfort can come with a rapid heart rate- did a holter monitor reveal you were having tachycardia during hours of sleep?  Acid reflux, of course, can also cause chest discomfort, which you said you have.  And allergies can actuall contribute to symptoms with G.E.R.D. due to increased phlegm production being swallowed.  I wouldn't entirely rule out some of the chest discomfort being caused by an acid problem and you might also consider having your bed at a slant at night if you don't already because a chest that is lying flat can make things worse.  Did you get your gastrin level measured?

Does a neurologist believe these burning in the spine feelings are neurological in nature?  The neck burning do they attribute to your thoracic outlet syndrome?  Johns Hopkins has quite a bit of info regarding that syndrome and treatment for it... you may have seen it already?  From what it looks like, I'm guessing your arm raising problems may likely be related to your TOS.  But I think you're wise to listen to your doctor about your other symptoms they think aren't related.

I am a teeth clencher myself, not a grinder, but you likely would catch yourself when you wake up clenching at some point if you did this.  However, you might check with a TMJ specializing dentist to check on your jaw joints.  I find my prescribed splint is very necessary... spending a night without it has resulted in a horrific migraine for me before.

It sounds like the neurologist you saw did an EEG on you, where they check for things such as seizure activity.  You might consider a neurologist specializing in dysautonomia for your current head pressure.

You might check with the doctor that ordered your latest MRI of the brain and ask if they could check with the radiologist to see if they also checked for Chiari malformation.  

Re: your iron- you took a vitamin without also taking iron supplementation for your iron deficiency?  Typically, a doctor prescribes both iron and vitamin C to be taken together with food for iron deficiency and should recheck to see how you are doing.  When was the last time you had an iron panel done?  If it's been more than three months, I recommend you get it checked again.  I believe I'm not the only one with P.O.T.S. who has had problems with iron deficiency, because I think I've communicated with people on here who've struggled with low iron too.  And it can make things worse.

Was it a beta blocker you were on when you were younger?  I believe midodrine normally would be taken more often than twice a day.  My sibling was on it recently (I was on it briefly years ago) and was taking it three times a day.

Another thing that can cause chest pain (and I've had this more than once) is costochondritis.  A doctor usually can manage to pinpoint it with probing fingers.  Have they ruled this out?  
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