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Not Pots, Then What Is It?


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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.

 

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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.

 

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47 minutes 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 was sent to an EP and he said something similar, but that he couldn't really help...So I got an appointment with a neurologist that specializes in POTS/dysautonomia. That said, the tilt test is to record what happens when the change one's position from horizontal to near vertical. Passing out on the TTT isn't fun. 

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5 hours ago, Eraena said:

The only thing I can think of now is Orthostatic Hypotension, along with some form of dysautonomia.

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. 

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44 minutes 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. 

I thought OI is another word for POTS. When my cardiologist said OI, I said is that POTS and he said yes. The question I have is, why?

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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.

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9 hours ago, JimL said:

I thought OI is another word for POTS. When my cardiologist said OI, I said is that POTS and he said yes. The question I have is, why?

OI ( orthostatic intolerance ) is actually a symptom. It happens with POTS, NCS and OH ( orthostatic hypotension ). It means that your body is unable to compensate for the changes in the upright position and causes dizziness, presyncope and syncope, cold hands and feet, tachycardia with or without BP changes etc. So OI is a catch-all description for these symptoms ( so is the term POTS BTW )

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Hi Eraena, I'm sorry you are struggling. 

It can be frustrating not getting a clear diagnosis but then even if you demonstrate typical POTS on the test, that is in itself a syndrome and can be caused by a number of different issues, not all of which can be identified. A repeatable diagnosis of POTS like in my case, also doesn't necessarily lead to any treatment that improves quality of life or functioning. 

What matters is that you feel unwell and are having symptoms that are interfering in your life, and even without a specific label there may be several treatment options to help you feel better. Have you tried any medication yet? How about compression stockings if blood pooling seems to be an issue?

Regarding your BP, if it is persistently low there are a number of medications that can be used to raise it. You mention it dropping when you stand, but does it then stay low or come back up again? Mine drops in the first few seconds which is only observed on continuous finger monitoring, but by the time it can be taken manually, it has shot back up above where it started. 

Lack of sweating can also be a sign of autonomic neuropathy, and there are specific tests such as skin biopsy or sweat gland stimulation test. 

Are you able to go to one of the main centers specializing in autonomic disorders? They might be able to give you more answers, and most importantly treatment to improve your quality of life. 

I also use a recumbent bike and seated indoor pedaller, and something I've found really helpful that is so simple & inexpensive is a small plastic spray bottle that I fill with water to spray my face when I feel faint & my body too when exercising. I do seem to sweat appropriately although have never been tested for this, but the water spray still really helps. 

Best wishes

B xxx

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4 hours ago, Pistol said:

OI ( orthostatic intolerance ) is actually a symptom. It happens with POTS, NCS and OH ( orthostatic hypotension ). It means that your body is unable to compensate for the changes in the upright position and causes dizziness, presyncope and syncope, cold hands and feet, tachycardia with or without BP changes etc. So OI is a catch-all description for these symptoms ( so is the term POTS BTW )

And that's where I am at. Next step, is the why?

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32 minutes ago, bombsh3ll said:

Hi Eraena, I'm sorry you are struggling. 

It can be frustrating not getting a clear diagnosis but then even if you demonstrate typical POTS on the test, that is in itself a syndrome and can be caused by a number of different issues, not all of which can be identified. A repeatable diagnosis of POTS like in my case, also doesn't necessarily lead to any treatment that improves quality of life or functioning. 

What matters is that you feel unwell and are having symptoms that are interfering in your life, and even without a specific label there may be several treatment options to help you feel better. Have you tried any medication yet? How about compression stockings if blood pooling seems to be an issue?

I do have compression stockings- knee high 30-40. But, blood pooling happens above the compression, so I tried to find thigh high, but all of them are not tight enough. I take Midodrine. The doctor want the dose up, probably up to 10mg.

Regarding your BP, if it is persistently low there are a number of medications that can be used to raise it. You mention it dropping when you stand, but does it then stay low or come back up again? Mine drops in the first few seconds which is only observed on continuous finger monitoring, but by the time it can be taken manually, it has shot back up above where it started. 

It comes back up again. The same thing happens, it drops, but doctors are too slow to catch it. I've also noticed a smaller gap between both BP numbers, specifically when standing still for a little while. 5mg of Midodrine seems to up my systolic by 10 points, but diastolic stays unchanged, staying in the 50's.

Lack of sweating can also be a sign of autonomic neuropathy, and there are specific tests such as skin biopsy or sweat gland stimulation test. 

I've been unable to sweat since I was young. I don't know if what I'm going through now, is something that's been there for years.

Are you able to go to one of the main centers specializing in autonomic disorders? They might be able to give you more answers, and most importantly treatment to improve your quality of life. 

I went to the Dysautonomia Clinic a few weeks ago. The doctor was perplexed, because it all sounded like POTS. But, she has helped, and gave a list of my "homework".

I also use a recumbent bike and seated indoor pedaller, and something I've found really helpful that is so simple & inexpensive is a small plastic spray bottle that I fill with water to spray my face when I feel faint & my body too when exercising. I do seem to sweat appropriately although have never been tested for this, but the water spray still really helps. 

Best wishes

B xxx

 

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34 minutes ago, Eraena said:

 

There are 30-40 thigh high and full on hose too. You may need custom if the fit isn't standard. I had that issue for awhile. 

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11 hours ago, StayAtHomeMom said:

That's where I am as well. My doctors don't seem to care why just throw medicines at me. 

They are treating the symptoms and not the cause because that's how they are trained and either they don't know what causes it and they don't want to try to find out or they can't because they don't have the tools yet. Unless someone loses consciousness, they won't have a sense and urgency and depending on where you are, even then. 

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9 hours ago, JimL said:

They are treating the symptoms and not the cause because that's how they are trained and either they don't know what causes it and they don't want to try to find out or they can't because they don't have the tools yet. Unless someone loses consciousness, they won't have a sense and urgency and depending on where you are, even then. 

In most cases of dysautonomia the underlying cause cannot be determined or if it can then there is nothing to do about it ( like EDS or hyperadrenergic ). Currently there is no cure for dysautonomia and the treatment is to manage the symptoms. 

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Yep, I get very faint after exercise, sometimes during. I've passed it after a walk, or had to lie on the floor in my mud room for hours after coming back from a walk. I still exercise... occasionally I get this weird prickly itchy sensation in my legs during exercise, and my color is pretty gray purple.

 

I'm in a similar boat as the OP here-not POTS, TTT not revealing, but I'm treated as dysautonomia, mostly NCS. I have persistently  low BP for no reason all the time, though. It isn't just positional.

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On ‎3‎/‎24‎/‎2019 at 6:11 AM, Pistol said:

In most cases of dysautonomia the underlying cause cannot be determined or if it can then there is nothing to do about it ( like EDS or hyperadrenergic ). Currently there is no cure for dysautonomia and the treatment is to manage the symptoms. 

According to the DINET website, there are a lot of underlying causes. I think some of your answer lies with who gets POTS mostly and  the causes for them, but PNS/Carcinoid, Parkinsons, MS, Amyloidosis, IBD, Crohns, Celiac, etc are all identifiable and to some extent treatable, although some have no positive outcome. I would bet for a lot of males, especially those over 50, the reasons for POTS maybe different and therefore the treatment different. 

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On ‎3‎/‎24‎/‎2019 at 6:11 AM, Pistol said:

In most cases of dysautonomia the underlying cause cannot be determined or if it can then there is nothing to do about it ( like EDS or hyperadrenergic ). Currently there is no cure for dysautonomia and the treatment is to manage the symptoms. 

 

On ‎3‎/‎24‎/‎2019 at 9:21 AM, JimL said:

According to the DINET website, there are a lot of underlying causes. I think some of your answer lies with who gets POTS mostly and  the causes for them, but PNS/Carcinoid, Parkinsons, MS, Amyloidosis, IBD, Crohns, Celiac, etc are all identifiable and to some extent treatable, although some have no positive outcome. I would bet for a lot of males, especially those over 50, the reasons for POTS maybe different and therefore the treatment different. 

I disagree with you Jim. If you look at people posting on dysautonomia forums as being somewhat representative of number of cases, rather than number of causes you listed, Pistol is correct.

I've had this for long enough to have seen a lot of people posting on forums. In the end, with the exception of kids, who can grow out of it, people mostly have symptoms managed and never know the cause.  POT as a catch all syndrome diagnosis has only been around for two or three decades. Even that as a syndrome can be a difficult diagnosis to obtain. Running down causes and specifics for treatment can be elusive. Not to be pessimistic. That's just the reality of it. I have a several rare diseases. POTS was actually not hard for me to get as a diagnosis and is one of the easier ones for me as far as disease recognition for heath care professionals I encounter. But on the scale diseases for most people I think it's very frustrating.  

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On ‎3‎/‎24‎/‎2019 at 10:43 AM, toomanyproblems said:

 

I disagree with you Jim. If you look at people posting on dysautonomia forums as being somewhat representative of number of cases, rather than number of causes you listed, Pistol is correct.

I've had this for long enough to have seen a lot of people posting on forums. In the end, with the exception of kids, who can grow out of it, people mostly have symptoms managed and never know the cause.  POT as a catch all syndrome diagnosis has only been around for two or three decades. Even that as a syndrome can be a difficult diagnosis to obtain. Running down causes and specifics for treatment can be elusive. Not to be pessimistic. That's just the reality of it. I have a several rare diseases. POTS was actually not hard for me to get as a diagnosis and is one of the easier ones for me as far as disease recognition for heath care professionals I encounter. But on the scale diseases for most people I think it's very frustrating.  

I look at the whole picture, not just what's typical. Big picture. Not everyone fits into what's most prevalent. 

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@RecipeForDisaster - I too experience syncope ( and worse ) not ONLY from the upright position, but even while sitting or even lying down. I have been diagnosed with NCS as well as hyper-POTS. I get the prickly-weird feeling in my legs too - usually that is what alarms me to get down on the ground or stop doing what I am doing. It is one of those things that I had to learn the hard way: in the beginning I did not pay attention to it or wanted to fight it. Now I know better: those subtle signals can make all the difference!!!!!

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3 hours ago, JimL said:

I think some of your answer lies with who gets POTS mostly and  the causes for them, but PNS/Carcinoid, Parkinsons, MS, Amyloidosis, IBD, Crohns, Celiac, etc are all identifiable and to some extent treatable,

Dear @JimL - the conditions you listed are all CHRONIC conditions, meaning there is no cure - only symptomatic relief. And not all of them have been identified as a definite cause of POTS. 

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On ‎3‎/‎24‎/‎2019 at 1:19 PM, Pistol said:

Dear @JimL - the conditions you listed are all CHRONIC conditions, meaning there is no cure - only symptomatic relief. And not all of them have been identified as a definite cause of POTS. 

Some PNS can be successfully treated, like thymomas and some other tumors. Usually when the underlying cause goes away, so do the symptoms.   DINET's website lists them as causes. 

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I finally got the exercise pedals. But, I keep on wondering if it was the right choice, because I can exercise while standing. While the constant lightheadedness is worse while standing, I feel like I'm being lazy, and not pushing my limits, if I don't stand up and exercise. But, then again, summer is going to be a pain. Not able to go outside because it's going to stay 85+ degrees, and possible "pop-up" storms.

On 3/24/2019 at 5:54 AM, RecipeForDisaster said:

Yep, I get very faint after exercise, sometimes during. I've passed it after a walk, or had to lie on the floor in my mud room for hours after coming back from a walk. I still exercise... occasionally I get this weird prickly itchy sensation in my legs during exercise, and my color is pretty gray purple.

 

I'm in a similar boat as the OP here-not POTS, TTT not revealing, but I'm treated as dysautonomia, mostly NCS. I have persistently  low BP for no reason all the time, though. It isn't just positional.

I get the same sensation while exercising. I haven't passed out before, but many times felt like I was going to.

I have persistently low BP also. Mine don't get down too low, though. But, again, with summertime, it'll probably go down to 70/40's.

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Regarding BP - I have both, high AND low BP. The funny thing is that when I run low ( 80/45 ) I am fit as a fiddle. If I go above 130/80 I am getting unwell and anything over 150's/ 90's causes me to seize or pass out. My sister on the other hand ( she also has POTS ) feels bad once she drops below 150/80!!! She can easily go as high as 220/110 ( symptomatic ) whereas I would have long checked out before I got that high. So - go figure! I guess BP is an individual reading rather an across-the-board number. ( Oh - I can feel the blood of cardiologists starting to boil! This would not go along with many of their theories/ training )!!!

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