Need help.

[Eraena]

Today, I’ve been diagnosed with POTS. Thing is, is that I don’t think I have it because I don’t have a sustained HR. It goes up 30-65 higher, but it’ll start to plummet back down.

When I stand from lying/sitting, I feel short of breath and feels like my heart is beating faster and pumping hard. And also feel a “heart-sink” sensation. 

I also have other symptoms: lethargic/feeling very tired, low blood pressure, lightheadedness, heat intolerance/unable to sweat, cold hands/feet.

Part of me says, “It fits.”, but the other part says, “It don’t fit.”.

[jklass44]

Hi there. I know what you mean by “it fits, it doesn’t fit” as I have thought that way before too. Accepting a diagnosis is tough.  I think it’s important to remember that dysautonomia or POTS is not just about tachycardia. Majority of the time, my heart rate from supine to standing will increase about 60bpm, but then there are other times where it will only increase about 20bpm. Those are what I consider my “good days”. 

You’ve listed a number of other symptoms that definitely fit into under the dysautonomia umbrella. 

What kind of diagnostics did your doctors do to confirm POTS?

Best wishes. Hang in there!

[Eraena]

5 hours ago, jklass44 said:

Hi there. I know what you mean by “it fits, it doesn’t fit” as I have thought that way before too. Accepting a diagnosis is tough.  I think it’s important to remember that dysautonomia or POTS is not just about tachycardia. Majority of the time, my heart rate from supine to standing will increase about 60bpm, but then there are other times where it will only increase about 20bpm. Those are what I consider my “good days”. 

You’ve listed a number of other symptoms that definitely fit into under the dysautonomia umbrella. 

What kind of diagnostics did your doctors do to confirm POTS?

Best wishes. Hang in there!

I’ve been dealing with low blood pressure and lightheadedness daily for the past 5 months. I told the doctor, and did a little test where I lay down, sit up, then stand up. It wasn’t a tilt table test, though, as it only took 3 minutes. But, the doctor saw the heart rate jump up from 84 to 116-124 when going from laying to sitting.

I think the heart rate jumping up is more to do with low blood pressure, but I don’t really feel lightheaded when I stand up. I can feel lightheaded when I’m laying, sitting, standing and walking around.

[Pistol]

@Eraena - I agree with you, normally in POTS the HR jumps up WITHOUT a drop in BP. It is a normal reaction for the body to counteract hypotension with an increase in HR. It very much sounds like low BP to me. Are you loading up on fluids and salt? Also compression stockings would be helpful in low BP. Fatigue and lightheadedness are also a symptom of low BP but the cold hand/feet and unable to sweat are not. Heat can cause a drop in BP so the heat intolerance could be from that. I would ask for a TTT and also - when you get severe symptoms I would go for IV fluids since they are a typical treatment for hypotension and I suspect they would immediately make you feel better. 

[Eraena]

18 minutes ago, Pistol said:

@Eraena - I agree with you, normally in POTS the HR jumps up WITHOUT a drop in BP. It is a normal reaction for the body to counteract hypotension with an increase in HR. It very much sounds like low BP to me. Are you loading up on fluids and salt? Also compression stockings would be helpful in low BP. Fatigue and lightheadedness are also a symptom of low BP but the cold hand/feet and unable to sweat are not. Heat can cause a drop in BP so the heat intolerance could be from that. I would ask for a TTT and also - when you get severe symptoms I would go for IV fluids since they are a typical treatment for hypotension and I suspect they would immediately make you feel better. 

I’ve been drink around, or over, 80oz a day. And trying to have every meal with some sort of big salty food. I got compression socks when my doctor recommended it.

But, they are other times where I would drink a bottle of water, coffee, and eat something salty, and my BP would be 86/48.

[RecipeForDisaster]

You are so much like me! I don't seem to fit in any mold except plain old hypotension. I do have cold hands and feet, heat/cold intolerance, and lack of sweating... but most of my symptoms can be attributed to shock itself. I have no idea why my BP is low-I seem to be hypovolemic, but why? I've had a lot of testing. My TTTs were inconclusive. Hang in there, this is a great group! I hope you can get some answers. Salt, water, and meds help but not enough. I will eat plain salt-I crave it so much. IV fluids are the most helpful but also least convenient and I am trying to save my veins, since I can't have a PICC or port.

[Eraena]

Took my BP this morning, 99/55. Put the compression socks on, waited 20 minutes, 104/59. I haven’t drank water or eaten. Even though the BP is a little higher, I still have lightheadedness. 

[RecipeForDisaster]

Also like me... my interventions boost my BP 5-10 points, usually. I was previously hypertensive so I don't feel okay until my BP is 115 or higher , usually. 

[Eraena]

1 hour ago, RecipeForDisaster said:

Also like me... my interventions boost my BP 5-10 points, usually. I was previously hypertensive so I don't feel okay until my BP is 115 or higher , usually. 

The bad thing, is that I had 2 bottles of water, coffee, 3,000mg of sodium, 12oz Gatorade and wore my compression socks for 6 hours, and still felt lightheaded and lethargic. BP is 87/47. I guess my next step is either Midodrine or IV fluids.

I thought that doing all that, my BP would be significantly higher, and would’ve felt much better. Is there something that can cause symptomatic low BP, and doesn’t increase regardless of adding water and salt?

[RecipeForDisaster]

We are all different, but I'm already on midodrine, mestinon, and florinef (small dose because of major edema if I take more-salt or IV fluids don't cause edema ever for me). I'm prescribed 15gm salt with my tons of water daily! Plus, compression. Just to show you there is at least one other person in this boat. Maybe we have the same issue. I can't get my BP out of the low 70s some days. I feel better with all this, but obviously not good enough. I feel bad enough laying down but it's better than standing. I try to do the fluids as infrequently as possible for a lot of reasons... a liter and a half only gets me 36-48 hours of doing better, so if I wanted to be at my best all the time, I'd have to have many IV sticks which is not so good for the veins, $30 per day of fluids, and be connected to a pole for 5 or more hours every other day... some people do keep a peripheral IV in for the whole week, but I have clotting issues and can't keep it good overnight.

 

I don't know what can cause problems like this, but I'm seeing an endocrinologist next week. I have 2 cardiologists, a neurologist, a hematologist.... No one really knows what else to do with me. Other than my leg temperature and color, paleness, and wobbliness, I look surprisingly good for my BP and still try exercising and working. I feel rotten but still do just about everything. Sometimes I pass out, but my life is still good overall. Hang in there, hope this helps, and know that it's possible to manage even despite all this!

[yogini]

Does your blood pressure drop when you stand?   You might have another form of Dysautonomia, not POTS.  Generally you have to have salt/water consistently over time and then your BP will increase a little.  Increasing salt and fluids only helps a little - it doesn't necessarily totally stop low blood pressure or flare ups of your symptoms.

[Eraena]

1 hour ago, yogini said:

Does your blood pressure drop when you stand?   You might have another form of Dysautonomia, not POTS.  Generally you have to have salt/water consistently over time and then your BP will increase a little.  Increasing salt and fluids only helps a little - it doesn't necessarily totally stop low blood pressure or flare ups of your symptoms.

It isn't really orthostatic hypotension. The lightheadedness is every few seconds, ranging for mild-severe, and can happen in any position: laying, sitting, standing and walking. I had a carotid doppler done back in August, which showed low velocity blood flow. I also had my heart checked to make sure it wasn't cardiovascular. My doctor thinks it could be something deeper, so he wants me to see a neurologist and a endocrinologist.

[yogini]

8 hours ago, Eraena said:

It isn't really orthostatic hypotension. The lightheadedness is every few seconds, ranging for mild-severe, and can happen in any position: laying, sitting, standing and walking. I had a carotid doppler done back in August, which showed low velocity blood flow. I also had my heart checked to make sure it wasn't cardiovascular. My doctor thinks it could be something deeper, so he wants me to see a neurologist and a endocrinologist.

In Dysautonomia you can feel lightheaded in any position.  Glad your doctor is running thorough tests.

[StayAtHomeMom]

You said coffee doesn't up your BP, have you tried caffeine from soda? It turns out that was contributing to my hubby's high BP. 

[Eraena]

3 hours ago, yogini said:

In Dysautonomia you can feel lightheaded in any position.  Glad your doctor is running thorough tests.

Wow, I didn't know that.

2 hours ago, StayAtHomeMom said:

You said coffee doesn't up your BP, have you tried caffeine from soda? It turns out that was contributing to my hubby's high BP. 

I don't really like soda, but thanks for the recommendation.

-

So, I took Midodrine. Of course, the first side effect is a tingly scalp, but how long does it take to up my BP? I took it almost 2 hours ago and I don't feel any better. I actually feel even more lethargic. I want to lay down, but I know I can't.

[StayAtHomeMom]

11 hours ago, Eraena said:

Wow, I didn't know that.

I don't really like soda, but thanks for the recommendation.

-

So, I took Midodrine. Of course, the first side effect is a tingly scalp, but how long does it take to up my BP? I took it almost 2 hours ago and I don't feel any better. I actually feel even more lethargic. I want to lay down, but I know I can't.

I take midodrine. The tingly scalp is my side effect too. It really is kind of freaky when you first take it. How much are you taking and how long the the tingles last?

[RecipeForDisaster]

I do better with 2.5mg midodrine taken more often , versus 5mg taken 3 times daily. I get chills as well as the tingly scalp, and if I take 10mg at a time as was first prescribed to me, I get this weird cold chest pressure that is very unpleasant. So if the side effects bother you, with your doctor's approval, you can try taking less....

I get a little boost in BP fairly soon, maybe in an hour? But, it's not dramatic. 

[Eraena]

11 hours ago, StayAtHomeMom said:

I take midodrine. The tingly scalp is my side effect too. It really is kind of freaky when you first take it. How much are you taking and how long the the tingles last?

I'm taking 2.5mg once a day. I thought it'll be 3 times a day, so I'm confused why my doctor wants me to take it once. I'm not sure how long the tingle lasts, but probably a few hours, and I start to feel it 40min after taking it. My systolic goes up a little bit, low 100s, but my diastolic wants to stay between 40-53. My low diastolic is what makes me symptomatic rather than the systolic.

[StayAtHomeMom]

21 minutes ago, Eraena said:

I'm taking 2.5mg once a day. I thought it'll be 3 times a day, so I'm confused why my doctor wants me to take it once. I'm not sure how long the tingle lasts, but probably a few hours, and I start to feel it 40min after taking it. My systolic goes up a little bit, low 100s, but my diastolic wants to stay between 40-53. My low diastolic is what makes me symptomatic rather than the systolic.

My doc started me at up to 5mg 3X a day. He said I could pick and chose (it is very nice). My Beta Blocker lowers my BP a bit and the midodrine seems to counteract it prefect. I usually take 5mg once a day sometime twice. But he had me start of slow by cutting the pill. I have been on it about a year. My tingling usually only last about an hour max about 3 hours into my dose. I figured by now it would stop tingling but I guess I am just lucky that way. My doctor doesn't seem concerned. He told me that's good, it means it is working. Overall it ups my BP by about 10 points both systolic and diastolic. 

[dancer65]

I am on midodine 7.5 X3 a day and if i have a late working evening i can add another dose , took me a few months to get up to that dose but it has helped stabilise my BP , use be 60s over 40s now it at 110 70  most of the time . Took about a year before I started to see improvements across the board in symptons but I now achieving 4 and half days a week working. I have also made huge lifestyle changes which I'm sure helps. 

I never had scalp tingling only goosebumps the first week , 

[Eraena]

I checked my heart rate from sitting to standing: 65 to 117. But, again, the heart rate plummets down very fast after reaching 117.

Does low blood pressure cause that? I don't feel lightheaded when standing up, but constant lightheadedness every few seconds.

 

 

[StayAtHomeMom]

14 hours ago, Eraena said:

I checked my heart rate from sitting to standing: 65 to 117. But, again, the heart rate plummets down very fast after reaching 117.

Does low blood pressure cause that? I don't feel lightheaded when standing up, but constant lightheadedness every few seconds.

 

 

BP issues can cause your HR to change to help compensate. When you stand up do you stand completely still? Just shifting your weight can help push your blood up and lower HR. A lot of us fidget as a natural response to help lower our HR. How fast does it come back down and to what number?

[Eraena]

8 hours ago, StayAtHomeMom said:

BP issues can cause your HR to change to help compensate. When you stand up do you stand completely still? Just shifting your weight can help push your blood up and lower HR. A lot of us fidget as a natural response to help lower our HR. How fast does it come back down and to what number?

I try to stay completely still, but a little hard with balance issues.

The HR goes down 1-2 beats per second. It usually can end up in the 80's, but can bump up to low 100's, then go back down. There's a lot of variation.

The compression socks really work with the HR on standing. Only went from 72 to 80. Sometimes my standing HR stay in the 100's, but with compression socks, it's sometimes as low as 65.

 

[StayAtHomeMom]

14 hours ago, Eraena said:

I try to stay completely still, but a little hard with balance issues.

The HR goes down 1-2 beats per second. It usually can end up in the 80's, but can bump up to low 100's, then go back down. There's a lot of variation.

The compression socks really work with the HR on standing. Only went from 72 to 80. Sometimes my standing HR stay in the 100's, but with compression socks, it's sometimes as low as 65.

 

It sounds like a TTT would be beneficial. It is kind of a weird contraption, but you would be upright without having the balance issues. And a doctor could look at your data and see yes or no. 

I am not sure what compression stocking do for a normal person.