I see some of the searches that people make that land them onto my blog. Some of the searches are like “um, what?!” While others makes me a little paranoid: “is it someone I know?” But mostly, I see these searches and 1) I am glad it got them to my blog. Perhaps it will shed a little more light on the subject for them. 2) It makes me want to have the direct answer to the question for them… so that’s exactly what I am going to do. I am going to go over just a few of them for now – I am sure there will be more of these posts in the future
1. Is POTS illness hard to live with?/struggling with POTS
Yes. No. Depends. Postural Orthostatic Tachycardia Syndrome, other dysautonomias, autoimmune diseases, so on and so forth are NOT one size fits all diagnoses. Actually, I think that can be said for even the more “typical” diseases and conditions in the world – including heart disease, cancer, diabetes, etc. What works for one may not work for others. There are far too many variables in life, in health, in personalities. Because everyone is different, I can really only answer for me but I can also say that I know there are people who identify with my particular situation. POTS *can* be hard to live with. Many of my symptoms, I have known since I was a child. I just had no idea some of the things I felt weren’t normal. There are periods of time where it gets worse and I often wondered “what is wrong with me?” I learned to cope and push through but that wasn’t necessarily the healthy or right thing to do. Some days are worse than others. Sometimes it’s really hard not knowing how I am going to feel on any given day or moment. Or not knowing why symptoms might flare up and which ones won’t. It’s incredibly frustrating to feel like I am just not trying hard enough when I get tired over nothing or when I am not able to keep up with things like others do. I struggle the most during work weeks. I feel like I should be A LOT more productive after a day at the office. Truth is that a majority of the time, I am the kind of tired you feel when you are coming down with the flu or worse, when you HAVE the flu. It’s hard when my daughter wants to do normal things and I can’t get myself out of bed or off the couch. It’s hard to make others understand when I barely understand myself. Is POTS hard to live with? You tell me. Look up what a POTS patient goes through and tell me how you would feel…and I will tell you that unless you actually have it and live it, you really have no idea. Seeing the overall quality of life of patients with POTS is often compared to that of patients with Congestive Heart Failure or Chronic Obstructive Pulmonary Disease (COPD), I am going to go out on a limb here and say it can be pretty rough at times.
2. pictures of blood pooling in legs/what does blood pooling look like?/blood pooling pots/what is blood pooling?/what does it mean if blood is pooling on your knees
I refer you to this post: What Does Blood Pooling Look Like Exactly?
And this one: legs, skin, weight, and the whole thing.
Blood pooling in the hands: dr. jekyll and mr. hyde hands
And because there is a possibility that this is due to blood pooling, here ya go: the swelling timeline.
Blood pooling is exactly what it says. It’s blood “pooling” or accumulating in areas of the body. Because of gravity, this mostly happens in the legs and feet. Sometimes the abdomen. Sometimes the hands and arms. Basically, your blood is not circulating back up as it should and this makes your heart work harder to get the blood pumping back up to it (hence the tachycardia).
3. POTS syndrome and weight gain
I don’t have the answers for this nonsense (yes, nonsense because I hate it!) but I do know it happens. I just don’t know exactly WHY. Some people get weight gain due to the medications they are on for POTS. Others, I am not sure what is going on. I do know mine comes and goes as it pleases. I question the term “water weight” because all i do is pee and the swelling remains. the swelling timeline and legs, skin, weight, and the whole thing are two posts of mine that go over this.
4. hot intolerance/cold intolerance/POTS and showering
My body is whack and I think it’s safe to say that’s true for pretty much anyone who has POTS or dysutonomia. My body often doesn’t have any idea what the temperature is. I can be cold for no reason. I can be hot for no reason. Parts of my body will be on fire and others will be ice cold (both in feeling and to the touch) – sometimes this can occur on the same exact limb, including fingers. I have more issues with feeling like I can’t get warm enough than i do about getting cool enough. Sometimes I can’t let myself exercise, be out in any sort of heat, or do much of anything because I will suddenly stop sweating, despite being perfectly hydrated. Those are times I can overheat. I’ve written about these subjects several times but here is one to start: the strenuous task of… showering?
5. pots syndrome and hives/mast cell disease/mast cell activation disorder/flushing/pots syndrome my neck and knees go red/urticaria
A lot of people have come to my blog because of my flushing episodes. So I will just refer you to some of the posts and check out some of the above!:
– not my most photogenic moments… dealing with flushing.
– hello, flushing with fatigue. we meet again.
6. flushing face adderall
I’ve been asked several times about this. I’ve also been asked whether or not Adderall (XR in my case) is the cause of my POTS or has made it worse.
In short: NO
Long answer: I’ve had these symptoms long before Adderall XR ever entered the picture. Since childhood, it’s been brought up that I could have ADHD. They tested me for it in 4th or 5th grade (I believe) and they said I didn’t but at the time, they were supposedly missing the diagnosis in the inattentive types, especially girls. Of course even back then I had the tachycardia and the fatigue so I was always tested for Epstein Barr. Always negative. Nothing further done. By the time I had my daughter at 20, and left work to be home with her at 21.. I was so worn down and out of focus and my symptoms (some of which I didn’t realize were symptoms) were really bad. This included flushing and hives. I was also having the weight fluctuations back then (seeing my old medical records when I moved back to NJ was an eyeopener to that!). It wasn’t lack of sleep – Scarlett had been sleeping through the night since she was about 2 months old! My doctor knew something was up but between insurance and my resistance (I know), she couldn’t figure out what was going on. Even back then, she did not like me on birth control (which is interesting now since I am pretty much not allowed to be on ANY hormones of any kind). That doctor really did try to help me. Because of issues both related and unrelated to my health, I was seeing a therapist and a psychiatrist. That psychiatrist is the reason I was diagnosed with adult ADHD and the reason why I was originally prescribed Adderall XR. Birth control pills (some) have had an effect on my blood pressure. Adderall XR? Zero. It also has zero effect on my heart rate. My heart rate and blood pressure are the same on or off the Adderall. In fact, before the psychiatrist put me on, she checked all of my vitals and noted my fast heart rate. I gave her the same answer I had always known: “it’s just how my body is.” So I was cleared to be put on the medication. When I started taking the it and it was in my system, I thought – “wow! they must have been right. I DO have ADHD.” Why? Because the medication did it’s job. I was able to focus more or at least think more clearly and I had more energy. Little did I know this was because the stimulant was making my blood circulate better. Blood was actually getting to my brain as it needed to! Because of this, I was able to move more and get a better handle on things like a healthy diet. I also truly believe that while I was doing pilates during this time, I was strengthening my muscles, especially in my abdomen, and this was helping with the blood flow process. I think there are many patients out there with Dysautonomia and/or POTS whose bodies get used to medication and start to override them. So Adderall doesn’t work as well it used to on me but I can tell you I’ve been off of them for long lengths of time and have gone back on them – there is a difference. I can tell the difference when I walk my daughter to school in the morning – if I don’t take the medication before we leave, I most often have to take a rest with my legs up before I can do the drive to work. If I DO take the medication, I feel okay enough to get in the car to go right away. It doesn’t cause or worsen my POTS. No. Instead, it has been the only thing that keeps me being able to deal with this whole POTS thing and I HATE IT. I hate taking any medication whatsoever. But here is my compromise… I take it. Another thing worth noting is that when I had my tilt table test done, the doctor who performed and assessed it told me that I likely didn’t have things like ADHD (and some other things like asthma issues) but that it was a part of POTS and anything underlying instead. He kept me on Adderall as part of my POTS treatment.
Want to know what has worsened my POTS and caused significantly more flushing?? BETA BLOCKERS. And that’s what points us all in the direction that I just may have hyperadrenergic POTS and mast cell issues.
– bad hives day and losing my mind
– struggling through my way
– hello, flushing with fatigue. we meet again.
– understanding our bodies vs. masking our symptoms
– not my most photogenic moments… dealing with flushing
7. catching “POTS” disease
No, POTS is not contagious. Not even a little. There’s a possibility of genetics but this hasn’t been fully proven yet.
8. hypochondriac postural orthostatic tachycardia/POTS child refuses to get out of bed/why don’t schools believe in postural orthostatic tachycardia syndrome/is POTS a real disease/postural orthostatic tachycardia syndrome fake
…really??? First off, read this blog in it’s entirety. I even have some real medical journal references backing me up here and there – read those in their entirety as well. Let me put this how the cardiologist who performed my tilt table test put it to me: “POTS is very real.” Ha. He said more than that but that was the jist. When I questioned him “was this in my head?” “am I just anxious?” – he gave me a big fat definitive NO. Before the test was over, he took my hand while I was still upright and he showed me how dusky blue it was underneath my fingernails and how red my hands and fingers were. He made me look down at my legs and feet and note how discolored and swollen they were. And he pointed to the monitors which showed my heart rate above 150. My bp was on the high end. Within a minute of being laid back down, my face got back it’s color. My fingers turned white. My legs and feet changed back. And my heart rate dropped to about 100. The dizziness I had felt while upright? Instantly gone.
Want to know what he said to me then? If the symptoms were caused by anxiety, I wouldn’t have been able to make my symptoms stop on cue. I still would have had symptoms while laying down. I would have had the symptoms before the test even began. There wouldn’t have been a sudden significant change from being in a different position. My brain could not be like “POOF! DISCOLORATION IN MY LIMBS AND EXTREMITIES BE GONE!” To believe that this was in my head was doing me and my health a great disservice. He emphasized that while not life threatening on it’s own, I absolutely needed to take this seriously and need to rule out underlying causes, especially given my family medical history.
Want to know if POTS is real? Spend a day with me. No. Spend a week or a month with me. See ALL of my moments and days. The good and the bad. See how unpredictable they are. See how much I am stubborn and will ignore things and will pretend I am doing okay.. only to pretty much fall flat on my face. See how sometimes I succeed. See how very real it is for me and my loved ones. AND QUIT DOUBTING WHAT YOU DON’T UNDERSTAND.