I have not been diagnosed with POTS; however, after reading some of the symptoms, I feel as if I have some type of OI. What I thought were drops in blood pressure; spells of near-syncope, dizziness, palpitations, breathlessness, etc., I am finding are actually tachycardia and/or spiking blood pressure. (My doctor ask me to monitor my blood pressure at home) Although my family doctor seems concerned that I am not feeling well, she doesn’t seem concerned that there is anything of a major concern. (I had an Echo and 24 hour heart monitor completed) She has referred me to a specialist for the near-syncope; however, I cannot get into the specialist for a year.
During one of my more serious spells, I was able to take my blood pressure and it was 155/80. I have always had a blood pressure of 110/60. And by the time I could get to the monitor, the spell was subsiding, so I think the blood pressure was coming back down from a higher number.
Although I have read everywhere that POTS is not fatal but a life changing syndrome, I wonder if the spikes in blood pressure are something I should be concerned about?
There is a test much like the holter ambulatory heart monitor that does ambulatory blood pressure monitoring. You would wear the cuff and its computer for the prescribed length off time and it would automatically take your bp at fixed intervals to show the doc how it is fluctuating. Because it will be so long until you can see the specialist, I would see if your family doctor can order that test. What type of specialist have you been referred to?
I have been referred to Dr. Grubb. I am fortunate enough to live in Toledo where he is located. I had never heard of him until my primary doctor sent the referral and I searched online for him to find out how great everyone says he is. I have been having these issues for many years with an increase in episodes since menopause and getting progressively worse since it has gotten hot out this summer. I don't like to try and self-diagnose, but I have been so frustrated. I have had many tests and they all come back ok; which I should be happy about, but the awful symptoms remain. I could ignore the tingling in my feet; the incessant need to urinate; the back/neck pain (which appears to have no reason); the palpitations, breathlessness and dizziness that come out of nowhere; but the thing that scares me are the episodes where I almost black out. I have thought for many years that my blood pressure was dropping during those episodes, but I am finding that it is actually increasing. I was holding my grandson the other day and had an episode; luckily my husband was there to take him. Sorry I think I am rambling, but my doctor even said she doesn’t know what to do next since all the tests (blood, Echo and heart halter) are coming back ok……and waiting a year to see Dr. Grubb is frustrating. Anyway thanks for the tip about the blood pressure halter. I have an appointment in August with my primary doctor. I will talk to her about that test.
I have this type of thing but my bp goes much higher. I am on bp meds also. I started fainting a few years ago and they found my bp would drop fast. For instance one time at dr it went from 190/110 to70/40 on less than 3 min. That causes me to pass out. I also had tachycardia which is treated with betablocker. It has helped some but I still have extreme surges in my bp. Could your dr do a tilt table test while you wait to see Dr Grubb? That might be informative. I am currently in the process of trying to see Dr Grubb or go to Cleveland Clinic. I know this is hard for you and wish I had answers for you but I hear Dr Grubb is the best.
What happens with postural orthostatic tachycardia, as an electrophysiologist explained to me, is that the heart races so you won't pass out.
I've had spikes in blood pressure happen with standing. I believe the body overcompensates with a catecholamine overdrive causing the spike. I had pheochromocytoma ruled out, getting a plasma free metanephrines test as well as a 24 hour urine test for metanephrines. You may want to do the fasting plasma free metanephrines test yourself to try to cover another base while waiting to see Dr. Grubb, though your spike is not extremely high.
In addition to P.O.T.S., I have a condition called interstitial cystitis. If besides frequency, you experience pain and or burning in regards to the urinary system, you may want to look into that condition as well. Mine is largely kept managed by dietary measures.
You may also want consider whether your peripheral neuropathy (tingling in your feet) may add to your dizziness sensation, as peripheral neuropathy can affect the balance/vestibular system. I have a parent dealing with this problem right now (has numbness in feet).
And you don't want to ignore the back/neck pain- could be very important to pursue these symptoms: if it were me, I'd want to find out if there is encroachment going on back there that might be giving you other symptoms besides pain. Please consider asking your doctor for imaging of the areas where pain is bothering you to be done.
I'm thinking another area to try to cross all your t's and dot all your i's would be a doppler of your carotid arteries- checking for any blockages of blood flow to the brain, particularly if you have issues with triglycerides &/or bad cholesterol levels being elevated.
And have they checked your oxygen level already or consider pulmonary function?
Have they made sure your ferritin and iron were normal and that you were not anemic?
Thank you for the information. By ignoring, I mean I have had tests about these issues and nothing is ever found. MRI on my back; Some kind of nerve test on my feet; All blood work came back ok.
You are right my spikes are high compared to other on this forum. But that is the only thing that seems to be consistent during my worse episodes. Everything gets so dark that I cannot even see, and I must stop and stand still in order for the palpitations and ringing in my ears to subside.
No burning or pain, just the frequency issue
I have had MRI and physical therapy on my back; nothing has ever been found.
I am noticing that the tingling in my feet will begin on the days that my blood pressure and/or heart rate spikes and continues the rest of the day. (It will be worse if I am additionally on my feet a lot that day). Typically the tingling will be gone the next day (unless I have another episode)
I do have high cholesterol, which I wasn’t ever able to control with changing my diet. So, I am on medication. I will ask my doctor about the doppler of my carotid arteries.
Thanks again for all your input. Helps me to focus on areas to discuss with my doctor
I was lucky enough to have a family member that has to monitor their blood pressure daily, They had an extra machine that I am using. My doctor has me take my blood pressure and pulse rate three times a day sitting and then standing. He said that a key sign of POTS is an increase of 30+ beats per minute. Maybe try and take your pulse sitting then standing and record your findings. That may be helpful in diagnosis. Of course I am newly diagnosed and have learned very little about it. There are many other signs and symptoms this one just seemed an easy one to keep an eye on.
I have taken my pulse and blood pressure in all three positions, and also when I am having episodes. Sometimes no change. Sometimes elevated bp of more than 20 and heart rate or more than 30. At those times I have little symptoms. At the times I have felt my worse. The heart rate and/or BP have been quite elevated. Can you have POTS if you don't have the elevated heart rate all the time?
The frequency of urination very well may be associated with dysautonomia. I tend to have a high volume of urine myself during 24 hour urine tests. Of course if you also have a big thirst (which can happen with dysautonomia too) but additionally are hungry a lot, you may want to ask your doctor for an HgA1c blood test to try to rule out diabetes mellitus.
Your description of standing still for the palpitations to subside may not be describing postural orthostatic tachycardia syndrome, because what we with P.O.T.S. typically need to do when our vision is going and our heart is racing is to sit/lay down until things calm down. Sitting on the edge of the bed before rising from sleep and not getting up quickly are important for the vision to try to keep from going grey.
I was diagnosed with P.O.T.S. and I don't always meet the thirty plus beats per minute increase with standing criteria. I also was diagnosed with I.S.T. (prior to the P.O.T.S. diagnosis) and my last holtor monitor showed an increase in the number of hours my heart rate went over 100. But also, be sure and ask the doctor about plasma free metanephrines, a fasting blood test to try to rule out pheochromocytoma, which can cause episodic high releases of catecholamines, rapid heart rate and high spikes in blood pressure (though I think they may typically cause even higher spikes than yours).
While I wasexperimenting taking prescribed blood pressure medicine for my orthostatic tachycardia, my systolic reached to the 130s at times while standing and the diastolic at times was over 100 with standing.
I see it has been three years since this post--I hope you have some answers and are feeling better. I have almost identical symptoms to the ones you described and have had most of the same tests. I just had a BP spike at the dentist and came home without a cleaning. It was about 150 over 100. I live in SW Fla. and it was a hot day which doesn't help. I first had symptoms after the birth of my third child and then they flared up even worse with menopause. I started taking hormones night before last for the first time and felt awful all day yesterday. I skipped the dose last night but still think it was the trigger for today. If you read this--does gluten affect your dysautonomia? Sometimes it seems to affect mine, and then it doesn't. Thanks :)
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