new to forumn and pots

[mercuryrising]

Hi everyone, so I recently learned about POTS from a friend and was doing research on the internet when I came across this forum. I was diagnosed with cyclic vomiting syndrome as a child, but thank god as of late that seems to be in remission.  I feel as though I have many symptoms that could be explained by POTS, but I have always thought they were "normal" so I am not sure what to do with this information.

• Headaches: I have always gotten a lot of headaches throughout my life. Starting about 6 months ago, I began having a bout of severe pounding headaches, which I now believe are orthostatic headaches. They would usually occur 2-3 times a week, and would be so severe I couldn't concentrate on doing anything. As they would always occur later in the evening, I decided to just lay down and go to bed one night. Well, the strangest thing happened, about 5 minutes after I went to bed, the pain in my head went away completely. I got up to go to the bathroom and as soon as I was standing the crushing pain came back.
• Blood Pooling/ Poor Circulation: I've noticed that when I stand for prolonged periods of time or even sometimes when I am sitting, my feet turn a grey/purple colour, which goes away if I elevate them. My hands and feet are usually cold, and sometimes they get so cold that they physically hurt. This has happened to me a bunch of times when I've been in a lecture and I've had to get a friend to hold my hands to warm them up.
• Intolerance to Heat: probably why I hate summer. Any temperature above 20 makes me feel awful and I start to sweat buckets. Likewise, my feet turn all red and puffy, which can be quite embarrasing when people point it out.
• Stomach problems: as I said, I have CVS, so nausea isn't too uncommon for me. When I was younger I used to have a lot more bowel issues than I have now, and I'm fairly sure that I had IBS-C/D, as I would suffer from horrible boughts of sudden cramps and diarrhea. This is the one thing that has improved as I have gotten older, but I still do get cramps after eating.
• Sleep: I sleep pretty good for a person my age, but I have to get a lot of sleep (10 hours) to feel well rested, and it takes me at least 1 hour to *mentally wake up in the morning. I just feel groggy and like my head is full?

I guess the only thing I am not sure if I am experiencing is tachycardia. I do have boughts where I feel extremely nervous, anxious and like my heart is pounding. Sometimes, after I stand up quickly my vision gets a bit wonky, but I've always thought that was normal and I've never actually passed out. I'm not sure if I am making a big deal out of these symptoms or if it is worth bringing up with my doctor. Any input would be greatly appreciated!

~mercury

[MomtoGiuliana]

Welcome to the forum.

You could check your hr sitting and standing, particularly when you are symptomatic, and see if your hr is increasing tremendously on standing.  That is the hallmark of POTS.  

Unfortunately a lot of symptoms, including many of those you describe, can be explained by a variety of other conditions too.

 

[StayAtHomeMom]

POTS symptoms can be "vague" symptoms and could be something benign. With your GI issues have you ever been checked out for celiac or crow's? (Sorry my spelling sucks). Also you mention for your age you sleep well. Depending on your age you could have just developed high blood pressure (my mom's tell tale symptom was the headaches). That being said, without knowing your heart rate there is no telling. The heart rate change is what indicates POTS. You can check it using a fitness tracker or even just doing a poor man's tilt table test to see. If you do notice the HR change of over 30 then I would talk to your doctor. If you feel like something is wrong wih your body, I would talk to the doctor anyway. If anything they can help calm your fears and maybe get some basic blood work done at the same time. 

[mercuryrising]

1 hour ago, StayAtHomeMom said:

POTS symptoms can be "vague" symptoms and could be something benign. With your GI issues have you ever been checked out for celiac or crow's? (Sorry my spelling sucks). Also you mention for your age you sleep well. Depending on your age you could have just developed high blood pressure (my mom's tell tale symptom was the headaches). That being said, without knowing your heart rate there is no telling. The heart rate change is what indicates POTS. You can check it using a fitness tracker or even just doing a poor man's tilt table test to see. If you do notice the HR change of over 30 then I would talk to your doctor. If you feel like something is wrong wih your body, I would talk to the doctor anyway. If anything they can help calm your fears and maybe get some basic blood work done at the same time. 

Thanks for the reply!

Yes, I was tested for celiac about 8 years ago. Forgot to mention in the above post that I am currently 21 years old... I find it hard to keep up with other people my age who seem to have a lot more stamina than I do. I will see if I can find a HR app and see what that shows. I actually have blood pressure that borders on the lower end of normal.

[StayAtHomeMom]

2 hours ago, mercuryrising said:

Thanks for the reply!

Yes, I was tested for celiac about 8 years ago. Forgot to mention in the above post that I am currently 21 years old... I find it hard to keep up with other people my age who seem to have a lot more stamina than I do. I will see if I can find a HR app and see what that shows. I actually have blood pressure that borders on the lower end of normal.

Not sure how accurate an HR app would be, but I guess it would be a cheap place to start. Fatigue can be a symptom of so many things. Everything else should be ruled out before a dysautonomia diagnosis. 

[StayAtHomeMom]

Oh and by the way standing up and "wonky" vision happening is not normal unless you are dehydrated. I always thought that was normal for a long time too. 

[Pistol]

@mercuryrising - some of your symptoms could be from deficiencies, especially Vit D and Vit B12. These deficiencies are common in POTS and can cause POTS-like symptoms in healthy people. Ask your doc about these - they are both a simple blood test and supplementation can bring great improvement. 

[mercuryrising]

5 hours ago, Pistol said:

@mercuryrising - some of your symptoms could be from deficiencies, especially Vit D and Vit B12. These deficiencies are common in POTS and can cause POTS-like symptoms in healthy people. Ask your doc about these - they are both a simple blood test and supplementation can bring great improvement. 

thank you! I will look into it. 

[mercuryrising]

11 hours ago, StayAtHomeMom said:

Not sure how accurate an HR app would be, but I guess it would be a cheap place to start. Fatigue can be a symptom of so many things. Everything else should be ruled out before a dysautonomia diagnosis. 

I'm not sure about the accuracy either. I did my HR laying down (55) and then immediately upon standing (109).

[StayAtHomeMom]

9 hours ago, mercuryrising said:

I'm not sure about the accuracy either. I did my HR laying down (55) and then immediately upon standing (109).

Do it again after standing for about 3-5 minutes. I would say if you get similar numbers to try borrowing a BP cuff to check HR that way. If you see your doctor first they can use a pulse oximeter (unless you know someone that has one). Don't fidget while standing either. Just stand straight. Don't look or watch anything that can cause your HR to elevate either. I know it sounds weird but little things can cause your HR to fluctuate and you want to have the most accurate reading you can get. 

[mercuryrising]

10 hours ago, StayAtHomeMom said:

Do it again after standing for about 3-5 minutes. I would say if you get similar numbers to try borrowing a BP cuff to check HR that way. If you see your doctor first they can use a pulse oximeter (unless you know someone that has one). Don't fidget while standing either. Just stand straight. Don't look or watch anything that can cause your HR to elevate either. I know it sounds weird but little things can cause your HR to fluctuate and you want to have the most accurate reading you can get. 

Okay I tried it a second time and did have similar results. When laying completely flat my HR was 61, then upon standing it was 110. After a couple minutes it went down to 100 but then went up to 110 after 5 minutes. I'm going to test it out again today and try to remember to test it when I feel symptoms. I wish I could know for sure how accurate the HR monitor is because I don't have access to a BP cuff or anything. I guess if I wanted a more accurate reading I would have to go to the doctors?

edit: I had a bath and my HR after it was 155. I always feel incredibly exhausted, breathless and drained after taking a bath, but I enjoy them much more than showers. The hardest part is getting out of the bath because you have to stand up and that is often when my vision is affected, sometimes it goes all black and I can't see anything, feeling like I'm going to faint.

[mercuryrising]

also, forgot to ask- after what period of time is it not normal for one's heart rate to be elevated when simply standing?

[MomtoGiuliana]

Drug stores often have BP cuffs you can use at the store for free, of you don't own one.  I would suggest writing down your results based on the equipment you own and bringing that information to your doctor.  You can also literally count your heart beats -- eg over a 15 sec interval, and then multiply by 4.

It's not normal for HR to elevate greatly from sitting to standing.  The hallmark of POTS is a change of 30 bpm or more on standing.

IMO a HR of 155 and feeling fatigued and breathless after a bath suggests POTS as a possibility.   Warm baths or showers are often triggers for POTS patients bc the warmth is a vasodilator.

 

[mercuryrising]

4 hours ago, MomtoGiuliana said:

Drug stores often have BP cuffs you can use at the store for free, of you don't own one.  I would suggest writing down your results based on the equipment you own and bringing that information to your doctor.  You can also literally count your heart beats -- eg over a 15 sec interval, and then multiply by 4.

It's not normal for HR to elevate greatly from sitting to standing.  The hallmark of POTS is a change of 30 bpm or more on standing.

IMO a HR of 155 and feeling fatigued and breathless after a bath suggests POTS as a possibility.   Warm baths or showers are often triggers for POTS patients bc the warmth is a vasodilator.

 

I guess what I find confusing is how long that elevated HR from sitting to standing is sustained in a person with POTS vs a normal person? Does the change of 30bpm have to occur within 10 minutes or sustained for 10 minutes? I feel like by 10 minutes my HR will change back to the normal range. I always feel that way after a bath. I suspect that my HR usually gets that high or higher based on the fact that I always have fatigue, breathlessness and difficulty standing up right after a bath. Again thank you for all your help, I really do not know much about POTS.

[Pistol]

@mercuryrising - it is common to have similar symptoms after a hot bath, since the hot water causes vasodilation. When you stand up after the bath your BP can drop suddenly, causing your HR to go up and the heart to pump stronger. Flushing, shortness-of-breath, dizziness and near fainting are also common symptoms. This CAN happen in normal people as well but normally improves after a minute or so. --- From what I know In POTS the HR goes up within 10 minutes and is sustained WITHOUT a drop in BP. A drop in BP followed by a temporary rise in HR is considered a normal response to orthostasis. 

[StayAtHomeMom]

18 hours ago, mercuryrising said:

I guess what I find confusing is how long that elevated HR from sitting to standing is sustained in a person with POTS vs a normal person? Does the change of 30bpm have to occur within 10 minutes or sustained for 10 minutes? I feel like by 10 minutes my HR will change back to the normal range. I always feel that way after a bath. I suspect that my HR usually gets that high or higher based on the fact that I always have fatigue, breathlessness and difficulty standing up right after a bath. Again thank you for all your help, I really do not know much about POTS.

It generally stays elevated as you stand if you have POTS. You may not notice it after a while or symptoms may worsen. POTS can be crazy unpredictable. For me it is when I stand still. If I walk slowly or fidget it will bring my HR down a little. But 115 while walking "slow turtle speed" is still not a normal response. A bath is easier for my body to tolerate as well. Showers are exhausting. I have a Garmin HR and when I shower I will keep an eye on my HR and once it gets to 140 I usually get out. I also usually have my hubby babysit me as well. I have had a few times for the exhaustion hit before I could go lay down so it makes me feel better to know he is around close by. 

[Pistol]

@StayAtHomeMom - I am the same way - if I get to a certain point I can no longer stand still or I pass out. Walking is still bad but I tolerate it better. Yesterday I was in a grocery store with my husband. I never do the check out lane b/c it has to be empty or I go down. Well - he had to do something and I was in check-out behind a very slow person with a full cart and … well, I ended up sitting on the floor checking out the cinnamon gum on the bottom shelf as if my life depended on it. And the funny thing is that my hubby came in looking for me and could not find me b/c I was on the floor! But eventually he found me and saved the day. So - yes, I also find that standing is much worse than walking and I believe that this is due to the use of the leg muscles helps with circulation, vs standing makes everything "stand still". 

[StayAtHomeMom]

3 hours ago, Pistol said:

@StayAtHomeMom - I am the same way - if I get to a certain point I can no longer stand still or I pass out. Walking is still bad but I tolerate it better. Yesterday I was in a grocery store with my husband. I never do the check out lane b/c it has to be empty or I go down. Well - he had to do something and I was in check-out behind a very slow person with a full cart and … well, I ended up sitting on the floor checking out the cinnamon gum on the bottom shelf as if my life depended on it. And the funny thing is that my hubby came in looking for me and could not find me b/c I was on the floor! But eventually he found me and saved the day. So - yes, I also find that standing is much worse than walking and I believe that this is due to the use of the leg muscles helps with circulation, vs standing makes everything "stand still". 

I have that issue. I do fine around the store but as soon as I check out my body freaks out. It is frustrating. Even fidgeting doesn't help a whole lot. I have to feel decent to go to the store.