Eraena

2 hours ago, Pistol said:

Orthostatic hypotension IS a form of dysautonomia. The TTT should show that, your BP would drop, usually along with an increase in HR. If you have presyncope you might have NCS - you can have a milder form that does not lead to actual syncope. 

Sadly, they took my BP a few minutes after the drop. It seems like It drops immediately upon standing, rather than a few minutes later.

6 hours ago, WinterSown said:

I'm sorry you are feeling these symptoms. There is no pass or fail on the TTT. It just records reactions. These numbers and your history will help build a diagnosis. I never fainted but I was still diagnosed. There are many forms of dysautonomia. My numbers are unstable and I sometimes swing into POTS but generally OI and NCS are my biggies. My EP calls it my CardioNeuroVasoVagally thing. It took some tweaking with the meds, learning to avoid triggers, eating right and a little exercise every day. It doesn't happen over night but you will get better.

 

I'm going to get exercise pedals, especially for summertime. It's hard to exercise while standing. It seems to aggravate the blood pooling, causing the lightheadedness to get worse.

I'm really scared about summertime, especially since heat, causing the blood pooling the worsen, and BP will be even lower. And also the inability to sweat. Living in the South East can be bliss or a nightmare.

For the past year, I've been having POTS-like symptoms. Blood pooling (bright red/dark red-purple/pink spots.), Anhidrosis, Low BP, constant lightheadedness when upright, relieved by lying down with legs up, HR spikes, headache upon standing, heat intolerance.

But, my heart rate don't stay sustained like someone with POTS. It shoots up (e.g. 76 to 135, 84 to 142) after standing up/after bending over, but heads back down within a minute. It also comes along with presyncope, and a horrible pounding headache.

I had a TTT, but totally failed it. HR only went from 83 to 98. I felt lightheaded though, but they took my BP a few minutes after it passed.

I had many tests done, which came back all normal. The only thing I can think of now is Orthostatic Hypotension, along with some form of dysautonomia.

My symptoms seems to gradually build up throughout the day. In the morning I feel "alright" - symptoms are mild, but as the day goes on, symptoms start to intensify. I start to have increased lightheadedness along with pounding headaches on standing and nausea.

Does anyone know why this happens, and how to deal with it?

I also have these two pictures. I was standing for 15 minutes.

Please excuse the mud puppy feet and the hairy legs. 

I was standing for 5 minutes. 

The feet start to feel tingly, burning and pulsy.

On 12/1/2018 at 5:35 AM, Pistol said:

@Eraena - your BP that you posted seems pretty stable. Some people ( including myself ) just have a naturally low BP and function well on it. Before having hyperPOTS my BP was always 90/50-ish and I felt great. I mind any increase in BP, since my POTS is controlled my BP runs low ( even as low as 80/48 )and I have no symptoms. Do you get dizzy when you stand up? Does your HR go up upon standing? If you have POTS your HR will go up without a drop in BP, regardless of wether it is high orlow. 

I rarely feel lightheaded on standing. It's rather I feel lightheaded every few seconds. My HR does go up. I've noticed the longer I stand, the more my heart palpitates, also along with chest tightness and shortness of breath.

On 12/1/2018 at 8:08 AM, StayAtHomeMom said:

I think your BP just runs low. Some people are that way. What is your HR rate numbers?

Then, it is normal even though I can't really function? My resting HR is between 53-65.

11 minutes ago, StayAtHomeMom said:

Stick with the neurologist. The HR change is what defines POTS. You could be normally that low or your blood volume could just be that low. Are you drinking lots of water and eating lots of salt?

I went to the doctor last year and my BP was 88/60, but felt completely fine. I'm drinking 80-100oz, and adding salt to things that already have salt. I had soup that had 1,550mg of sodium and I added 1/2 of salt (around 1,000mg). I'm also wearing compression stockings and taking Midodrine.

I haven't decided to take my BP in all positions until now, and I've noticed that it's low in all positions.

[Lying down]: Systolic 95-104/ Diastolic 54-60

[Sitting]: Systolic 80-105/ Diastolic 44-59

[Standing]: Systolic 93-105/ Diastolic 58-64

My resting HR is usually 53-65.

 Probably the reason why I feel lightheaded in all positions? I find that natural treatments and medicine isn't helping to raise the BP, or at least is not helping me feel less lightheaded and tired. I was diagnosed with POTS, but the doctor said it wasn't a definite diagnoses, and said that it could be something deeper. I don't go to the neurologist until January 22. I don't know if it is Dysautonomia, but something clearly doesn't feel right. I don't have a drop in BP on standing, and it seems everywhere it focuses more on orthostatic hypotension, rather than BP staying chronically low.

I know you all can't diagnose me, but I don't know where to go next.

What causes isolated diastolic hypotension? I had (literally) 4 biscuits with gravy and went crazy with sea salt, then drank close to 28oz of water. My BP before was 94/53, now it's 110/53. It seems top number responds to water, salt, medication, but my bottom number wont budge. The bottom number is causing all the symptoms, and haven't seen it past 60 in a while.

1 hour ago, StayAtHomeMom said:

Good luck. I am not sure if you have side effects from it. I get the tingles (mostly in my scalp). Even after a year I still get it most of the time for up to an hour while it is in my system.  The first time it happened it really freaked me out but generally speaking it is a nuisance more than anything. Just wanted to warn you. My doctor doesn't seem concerned but if it happens to you make sure you let your doctor know. 

That was my first side effect. I was like, "What's happening to my scalp?". It usually starts 40mins after, then lasts around 2 hours.

Do I have to take it for several days for the body to get used to it? Or is it a medication that can take affect on the first day of taking it?

15 hours ago, StayAtHomeMom said:

With doctor's permission it is possible. I take up to 5mg up to 3 times a day. Doc let's me adjust as needed. 

The doc said to take 1 2.5mg and half another one, to make it half of 5 for a few days. Then change it to 5. I can't wait to see the results and feel better.

@StayAtHomeMom

The only medication I'm taking now is midodrine, 2.5mg once a day. I thought about calling the doctor to see if I can up the dose.

I've been dealing with chronic symptomatic hypotension since May. I've tried everything I could to raise it: Water, salt, compression stockings, medication and even exercise. I had many blood tests done, which all came back normal. My systolic doesn't get too low usually around 80-95, but when my diastolic goes down to mid-low 40's I start to feel very sleepy/drowsy/weak and feel the need to breathe faster. One time I was exercising and checked my BP, it was 125/52. 40mins after, it was 81/52. I haven't fainted, but I guess it's concerning because of constant lightheadedness and feeling lethargic.

Should I go to a neurologist or an endocrinologist? Because I find it very strange for it not to improve with lifestyle changes

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.

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.

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.

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.

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.

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?

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. 

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.

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.

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.”.