yogini

High blood pressure is a very common negative side effect of florinef and you could read more about other people's experience with this by doing a search on the forum.  Maybe ask your doctor about other ways to raise BP which only work during the day, like florinef or compression hose.  

In healthy people the HR goes up for a few seconds or minutes then comes back down when you stand. In POTS it is a sustained heart rate increase so 15 min or30 min after standing you would still have tachycardia. This is the very definition of POTS.  If your HR doesn’t stay up for more than a few minutes then you don’t have POTS, but might have another form of dysautonomia.

Hi. This sounds unusual and I would ask the dr

Hi Katy,  

The symptoms you mention, like thirst, dry skin, etc. are pretty common to POTS, whether or not you actually have low blood volume.  Also, many people with dysautonomia  benefit from taking florinef - again, this is whether or not you have low blood volume.  Only a small percentage of POTS patients actually have low blood volume - you could get a special test to see if this applies to you.

Agreed with dizzytizzy.  When I wasn't feeling well it always helped me to communicate with others, mostly through phone calls.  It helps to occupy your mind and then you also don't feel alone.

Have you sought treatment for anxiety?  I'm not sure anxiety causes HR to go to 170, but a specialist could advise better.   Your blood pressure (even 90/60) seems normal, though.  I would not worry about passing out with a BP of 90/60 or being bedridden.  Most people with POTS don't pass out and most aren't bedridden or totally disabled.  Just take each day one day at a time.  Stay off google if it is stressing you out.

It is like asking what do you take for a headache Advil or Tylenol? Advil works for some, Tylenol for others and some others need a different med entirely. Some don’t respond to meds at all. The dosing is also totally different based on the med and the person. Each pill of  Advil is 200mg. Each Tylenol is 500mg and so the dosing of 2 meds can’t be compared. And prescription meds like betas are even more complicated than Advil and Tylenol.  By reading what doesn’t work for someone, you might get discouraged about something that could work for you. The best thing is to try for yourself what your doctor suggests  for you.

There isn't a Dr. Grubb type of person near NYC. I've used Dr. Richard Mueller in Manhattan and he is good and knowledgeable - but he's regular cardiologist.  I started using him about 4 years after having POTS. I basically tell him what I wanted to try and he always agreed.

 I think if you have low RBC you have another condition (like anemia -- there are others) on top of dysautonomia which is causing the low RBC and you might feel a lot better if you treat that condition. Yes there would be an overlap in symptoms.

I think a lot of pots patients have low blood volume, which is different than low RBC.  Anemia is pretty common in women and I'm sure several others have it here, but from what I understand it isn't connected to POTS the way low blood volume is.

Hi, it is so challenging and frustrating to have a range of crazy symptoms and not have answers. And dealing with condescending doctors is the worst. Most of us on this site have been there.  I hope you get a diagnosis and feel better soon.

I am not sure whether your focus should be Dysautonomia. While there are some similarities between your symptoms and Dysautonomia the main symptoms In Dysautonomia relate to heart rate and blood pressure. I agree  with the recommendation to see a rheumatologist or autoimmune specialist.

If you're blacking out and have pooling in your legs (which is what the photos look like), you might want to check your blood pressure when sitting/resting and then after standing.  When measuring the difference between sitting and standing for both heart rate and blood pressure, make sure you stand for  several minutes before taking the measurement.  The heart rate swing you reported is under the POTS standard which is a sustained increase of 30 bpm or more.   

Check with your doctor but all the numbers you post seem to be pretty "typical" and "normal" as far as I understand. I think even a healthy person could have number like these.

 It look like you have an Omron monitor, which is a good brand - the same one I have.  But even then it malfunctions and it is more accurate for measuring blood pressure than heart rate.   Malfunctioning doesn't necessarily mean that you have an issue with your heart rate or BP - it is more likely the machine.

If you want to accurately monitor your heart rate, a heart rate watch with a chest strap is the way to go.  Measuring a couple of times a day and keeping a log of it is helpful.  

On 6/3/2018 at 11:25 AM, Brokenlittleteapot said:

Thank you Debbie Rose 💗💞 much appreciated. 

 

Has anyone else had a severe drop in BP when sleeping? Because mine got to 87/48 last night and I felt awful/sleepy all day. And it legit scares me. All the doctors are telling me I won't die but it sure feels like I will , ah Dysautonomia. The joy. Not. Lol

Everyone's BP drops at night, even healthy people.  Check with you doctor but my understanding its that 87/48 during sleep is totally normal, nothing to worry about. 

I have noticed I tend to feel panicky when my POTS is acting up.  I think for me this is not anxiety or an allergic reaction but rather ”just POTS”. Eating  lowers blood pressure and is a common trigger for POTS symptoms.  Try eating smaller meals and avoiding carbs and see if that helps.i always feel better later in the day so I eat more and eat more carbs at night.

Glad you are feeling better. My advice is to enjoy each day without thinking about the future and use some of your energy to exercise and build your strength.  That is critical to long-term recovery.

If your diagnosis is just POTS make sure to get a full heart work up. You may have had one already.  For most of us the workup is clear and there is no reason to worry about having a heart attack.  You’ll get used to the strange sensations soon enough.  

There is no reason to work hard for a diagnosis.  I agree I'd get tested after the birth and once things settle down.  With no time pressure you will figure it out.

yes and it helps.  but compression stockings are more effective for me.

What time of day do you take the beta blocker?  If your doctor approves you can try switching to see if that helps your sleep.  You might also want to google sleep hygiene.  Lots of little things you can do to improve sleep - not having caffeine after a certain hour, etc.

Yes I had extreme swaying - feeling like the ground was moving or I was walking on a rowboat- when I was very sick.  This symptom is mostly gone but I get it occasionally when I have a flare up.  

Are you diagnosed with POTS?  Did you tell your doctor about the two prior incidents? What is his reason for prescribing the medication you don’t want to take?

You might want to try googling - I believe I have seen studies linking Gardasil to dysautonomia.  So, that could be the cause.  However, lots of people get SFN and POTS without any explanation or clear cause.  Some people have an increase in blood pressure and it's not unusual  to symptoms of fatigue etc. even when your vitals are normal.  I hope you feel better soon.

POTS is complicated, but I think if you told someone your symptoms are much better on some days than others they might understand that part.  There are so many common illnesses - migraines, allergies, asthma, acid reflux - that don't act up every day.   This is no different.

But also agree with the others to limit the discussion to as needed, with trusted people.  

2 minutes ago, whoami said:

I think i wouldn't worry about those if i wasn't having symptoms for 1 year and a half, sadly.

With my current anti-depressant, its a lot better and i feel less adrelanine surges. But i still have a pressure in my head when im upside down / bending. Also, when i stand quickly, my heart pound.  I never felt that way before, ever. 

When i discontinued my previous anti-depressant (citalopram) 9 months ago, standing was a huge rush of adrelanine and felt like the gravity was x3-4 that of the normal value. But not always and it happened more in the morning. Now im on lexapro.

What's funny is that i started taking an anti-depressant for my health anxiety problems. Could those possibly have "destroyed" my sympathetic nervous system and throw everything into disarray?
 

Im getting confused haha. Trying to put the pieces together, but its hard. I've been trying for a long time. But not having pots would be a huge plus (and no symptoms, of course).

I just just meant I would not be worried about that particular scenario, which seems to be a totally normal HR response. Totally agree it is important to figure out what is causing your symptoms.  I hope you feel better soon.

41 minutes ago, whoami said:

 

The most difficult task for me, is when i stand from the ground and not my bed. If i lay flat on my belly on the ground and then push myself quickly to a standing position, my heart rate will go from 70-80 laying to near 110 bpm standing for 20 secs, and then it goes down to 80-90 (+10). Blood pressure also increase.


 

In normal heathy people, the heart rate increases exactly how you describe here.   I would not be worried about this as a problem.