Daughter Exhibiting Pots Symptoms With Anxiety

[daisy]

I wanted to see if anyone had any information on the prevalence of POTS in our kids. Does anyone know what the data is on it being genetic? I am quite concerned about my daughter. She'll be 13 in a few weeks. My illness has been hard on her over the years. She has always been prone to anxiety since she was very small (pre-school was a nightmare and she is a HUGE worrywart) but since I became ill several years ago, this has snowballed. Obviously, she is very worried about me and something happening when she's not around since she's seen my episodes in action one too many times. It seemed she was doing really well for awhile but lately everything has become very magnified again. She is also exhibiting POTS symptoms when she is very anxious and occasionally when she is not. For example, today she's been a basket case. She hasn't felt well and she thinks that she's going to pass out (she bases this on what she sees happen with me). While sitting her heartrate was around 74 and when she stood up it went up to 130 within seconds. Later it jumped to from around 80 to 150. She's saying things like, "I don't want to stand in one place in the shower" and things that I have said in the past. She's basically taken on my illness yet I'm afraid she does have some signs. Thing is, I am pretty sure that the anxiety is causing these symptoms. I assume if you have been a big bundle of panic for several hours that when you stand, the heartrate will get very high. I don't want her to see my cardio right now (he said he will see her) while this anxiety is so prevalent. Obviously, she needs some counseling to learn how to deal with my illness and how to calm herself and not be so tuned in to her heartrate (she is constantly checking her pulse). I'm going to start making calls tomorrow to find someone we can work with. But, I am still concerned about the high heartrate jumps in case they are not related to the anxiety. She plays soccer with no trouble and rides her bike around the neighborhood and seems ok doing activity.

Is POTS genetic? Does anyone here have it as well as their children? And, can anyone offer any advice on how to help our kids deal with our illnesses. I know I need to not talk about it as much as possible in front of her but it's hard when she sees the episodes. Any advice you can provide is very much appreciated.

Thanks...

[juliegee]

Oh Daisy-

I hate that you are seeing symptoms in your daughter. First, is POTS genetic? It depends on the underlying cause. Many of us have underlying connective tissue issues, which are most defintely genetic. I have autonomic problems, so does my son. Two of my three brothers, my mother & maternal grandmother are all affected. So, YES, there's a good chance your daughter inherited this from you.

As a Mom, who's been there with my son, let me share a few thoughts with you. I strongly suspect that your daughter IS truly suffering from dysautonomia. I do NOT suspect that she has psychological problems. I went through something similar with Mack. Our situations aren't identical as Mack was Dxed before I was, BUT he also exhibited major anxiety symptoms that seemed to come out of nowhere & were not characteristic for him. (I understand that this is characteristic for your daughter. Maybe she's been suffering with this for a while. You'll ultimately have to decide what seems real to you.) Mack's anxiety occurred prior to any social situation (really anytime he left the house.) Prior to all of this, Mack was basically normal, then following an awful GI virus, he never really recovered. Nausea, vomiting, early satiety, lying down, sleeping most of the time, and this weird anxiety were his major symptoms. He was 12 y/o and he experienced an enormous growth spurt that year. Your daughter's age & her description of symptoms leads me to believe she also has some autonomic dysfunction occurring. Like you, I assumed it was psychological. My son's GI told me it was. (In retrospect, I shoould have asked for his license to practice psychology ) I even tried to talk Mack out of it. I told him his stomach used to hurt. "It doesn't now. It's OK to eat without vomiting, honey." He loves to remind me of that one. I even took him to a psychologist who determined that he was emotionally quite healthy, but he was suffering from some physical issues & was very frustrated that no one was helping him. The psychologist did teach Mack some biofeedback techniques that were somewhat helpful with the anxiety while we waited for all of his testing at Johns Hopkins.

The long and the short of it was that he did indeed have an autonomic dysfunction. Dr. Rowe, from Hopkins describes the anxiety he was experiencing, not as an emotional shortcoming, but as having a physiological origin due to the autonomic issues. When his HR went very high and his BP dropped out, Mack's body sent out tons of adrenalin to counteract all of that. The body perceives adrenalin ("fight or flight" hormone) as pure anxiety that seems to come out of nowhere. What was confusing was that Mack's anxiety occurred almost every time we left the house, even if we were going somewhere he really wanted to go- like the local skateboard park. Riding in the car set off his symptoms big time. Every time we would arrive at our destination, he would use every ounce of strength he had to get out of the car. He often had to lean against it for 30 minutes or so to stabilize. He often vomited a few times. Then, he's grab his skateboard and dive in. It was heartbreaking to see. It was so easy to confuse this with agoraphobia or school anxiety, etc. I did & I was wrong. IT DELAYED HIM FROM GETTING THE HELP HE NEEDED MORE PROMPTLY. Please don't make the same mistake.

I think your daughter needs a TTT with a good EP. I strongly suspect that an SSRI will be a part of her med regimen. Despite the fact that SSRI's are used to treat anxiety & depression, they are also used to help balance the autonomic nervous system. Florinef, mega doses of salt & fluids, and lexapro were the beginings of Mack's med regimen. I bet your daughter ends up with something similar.

I see why you think this could be learned behavior, based on many factors (her age/description of symptoms), I don't think that it is. You've got to make the ultimate decision as her Mom. Let us know what you find out.

Hugs-

Julie

[daisy]

Thank you so much for your reply Julie - I am sorry you and your son have to deal with this. Believe me when I say that I will definitely not write her symptoms off as anxiety and make sure I get them checked regardless. I'm not sure what's going on at this point. Unlike your son, Sara's anxiety has not come out of nowhere. She has been dealing with it most of her life. She's perfectly fine as long as she's distracted and busy with her friends. For example, a couple of weeks ago, her dad took her and a friend to the local carnival. She rode the rides and was out in the heat with large crowds of people and had a blast with no trouble. She rides her bike with her friends through the neighborhood and goes for walks with them - no problems. When she's home around me, it's almost as if she takes on my illness. She's always been terrified of something happening to me when she's not around. She panics if I have to go somewhere and when my husband and I tried to take a short weekend trip to the beach, she was so distraught we ended up taking her with us. She's become obsessed with feeling her heartrate and is constantly afraid she's going to pass out even if she feels fine. Her fear is that when she starts school in a week she will just randomly pass out while walking down the hall (I often have episodes at random with no warning).....her blood pressure has been fine. If she gets a stomach cramp, she panics she's going to get sick on her stomach. A few years ago she was afraid to eat because a friend threw up at the lunch table and she was terrified that would happen to her. We worked hard with her on her anxiety and it did seem like she was getting better but this summer things have definitely turned bad again possibly because I have flared over the last six weeks and school is coming up and I even wonder if hormones are coming into play.

What you said certainly makes alot of sense....I guess my fear is that if I get her tested while she's in such a state of heightened anxiety that she will possibly get a false positive. Having been on meds for POTS and other arrythmias I have I know how difficult these meds can be to take and I don't want her medicated unless absolutely necessary. I know that stress will affect our heartrates so it makes sense that her heartrate would be exaggerated when standing when she's under this much pressure.

How do you handle both you and your child having to deal with this? Right now, I don't feel strong enough and that scares me and makes me feel guilty at the same time.

I plan to call my primary Dr. tomorrow to get some referrals to a good counselor (he is also very familiar with POTS) and will also get in touch with my EP cardio. He's wonderful so I'm lucky there.

Thanks again for taking the time to reply and share your insight. I hope you and your son are doing well...

[carinara]

Hi Daisy,

The situation about your daughter reminds me of myself when i was a child. I was a happy go luky type of girl but i also got very anxious at times to a point how you experience it now. Looking back, i know that i never felt quiet well healthwise. Dont get me wrong, i participated in every sport you can think of, had a lot of friends and spend much time outside in the sun but i never quiet felt right and i didnt know how to explain it to my parents because i thought that it must be normal to feel like that and tried to blank it out. There were times when i was running around with my friends and felt so dizzy, but nobody knew. When i told my parents they said things like: you have been outside for hours and now that your home you are complaining (they thought it was just some kind of tactic for me to get out of doing other things around the house). I also remember when for weeks i didnt want to go to school because i felt disorientated, dizzy and over all not right but i had to go and at some point in during the class i felt better again. This was the time when i started to worry about dying. If i heard about a disease i became so scared that i will have it and checked myself and drove my parents mad because i kept asking them question about different illnesses. When i heard in the news that somebody poisened some schoolmilk somewhere and that some people had to go to the hospital because of this (of course they described the symptoms they had as well), i was frightened so much, that i stopped drinking milk in school. All this went on and on. I was only a child and as i look back now, i was only trying to find explanations of why i didnt feel right. I always wanted my parents around me because i was so scared that something would happen. But back then i didnt realize what the real problem was. I just didnt feel right but nobody would notice because i still tried to be an active child and there were periods of time were iam sure the symptoms dissapeared, but up to this day i do remember loads of situations were i was tachy, dizzy, and scared to death whilest being a child.

Please go and get your daughter testet. I honestly dont think that somebody can fake a TTT under the eyes of experts. If somebody is "only" anxious without having POTS the HR wouldnt change that much from sittin to standing. And on the reverse, if a HR is that high during standing the pure act of sitting down wouldnt drop the HR dramatically if its "only" anxiety (hope you understand what i mean).

Please take care, you and your daughter are in my thoughts.

Carinara

[mkoven]

Hi Daisy, I second what others have said. Anxiety might cause an elevated heart rate, but I don't think anxiety alone causes an orthostatic increase in heart rate. A tilt table would tease that out.

[dsdmom]

Anxiety is not postural - meaning it does not cause your hr to change on position. Does her heart rate return to normal on sitting? If so, that's not anxiety. I understand she has anxiety and should talk to someone about trying to deal with it but her symptoms sound very physical. I just would hate her symptoms to be brushed off because of her anxiety.

[potsgirl]

Hi Daisy,

I guess I'm going to go against popular opinion a little and say that from what you've written, with my background in psychology, that your daughter certainly sounds like she has an anxiety issue she needs to get help for, but she also needs to get a tilt table to rule out dysautonomia. I started suffering from generalized anxiety disorder about 10 years ago, well before I got sick with POTS/OI. I definitely think there's a link between the two illnesses, but that anxiety can't always be put into the box with dysautonomia, especially when she's so caught up in your illness and is mimicking your behaviors. It can be a manifestation in and of itself.

I wish only the best for you and your daughter, and either way, she sounds like she should get treatment soon to start treating her symptoms. You'll be a great help to her, especially if she does turn out to have dysautonomia, by teaching her that life can be manageable with this disease. Please keep us informed on how she's doing. You two are obviously going through a very difficult time right now.

My best,

Jana

[juliegee]

This is a tough one, Daisy. I hear you. I don't think it's either/or. I strongly suspect it's both/and....both dyautonomia AND anxiety. It's hard to untangle them sometimes.

Dsdmom made a good point about checking HR with postural changes over ten minutes of standing perfectly still. Mack's BP always seemed fine too, but that drop occurred for him at 35 minutes on his TTT and it dropped to an unmeasurable number. Dr. Rowe says Mack's body intuitively knew it was coming and he poured out the adrenalin to counteract it during the entire TTT. He consistently reported feeling nauseous, anxious, and lightheaded- even when his vitals looked OK.

I think you're right to seek help on both fronts. How wonderful that one class of meds (SSRI's) could treat both conditions. It's normal for your daughter to worry about you with your illness. To counteract that, I know you act as competently/healthy as you are able. She may also be experiencing similar symptoms and worries that she's next. So much to sort out and deal with. You're both in my prayers. please let us know how she's doing.

Julie

[daisy]

Thanks so much everyone for your responses. I have called my EP cardio and hopefully they will fit her in soon (they are calling me back with a time-I'm hoping he'll see her this week). Of course, school starts on Monday so the timing couldn't be worse (but it's never good timing, is it...). This morning, her heartrate was around 145 when she stood up. I am terrified she has this. I am terrified I won't be able to take care of her and be the mom she will need me to be through all of this.....some days I can hardly take care of myself. I hate the idea that she may have to live with this. Of course, I'm not projecting this on her but I know she sees my fear. The one comfort to me is that she doesn't exhibit the orthostatic symptoms (other than the high heartrate) when she's up and about. She says she isn't dizzy or lightheaded and the heat doesn't bother her, etc. So, I'm hoping that if she does have this, we can start treating it early in the game and hopefully it won't progress as much.

Julie, how is Mack doing? Are his symptoms under control? I have been unable to take most of the meds we've tried for me....SSRIs were really bad on my system.

I don't really know too much about how POTS affects kids other than the heartbreaking stories I've read on dynakids.org. Does is usually resolve itself in a couple of years? All the fears are crashing in that she will have to live with this to adulthood and beyond and how it will affect her life. I think a part of me is going through the emotional process now so I'll be stronger through the appts., tests, etc. I also have atrial fib, atrial tach, IST and SVT in addition to the POTS.....all of those conditions can be genetic. I am assuming in addition to a tilt, he will probably put her on a monitor to rule out those things.

If you are a praying person, we could really use the prayers. I'm sure I will need all of your support and it's nice to know you all are there to talk to.

Thanks so much and I will keep you all posted.

[vemee]

My daughter also began showing pots symptoms at the start of eight grade, however pots was drowned out by her severe anxiety. She had to be taught at home the second half of her eighth grade because of the anxiety/depression. We did not address the pots until she was 18 and was officially diagnosed. My uneducated opinion is that the anxiety is the result of a change in norepinephrine levels. The body produces more norepinephrine in order to compensate for pots. I don't know what her levels are because I couldn't get the doctors to listen to me but mine are high (over 2100 standing, upper limit of 498). She has responded to proamatine and her anxiety is now manageable in fact it isn't a problem for her. If the doctors want to put your daughter on an antidepressant don't let them put her on a norepinephrine reuptake inhibitor which will increase her norepinephrine levels even more unless they do a blood test to see what her levels are before they start.

I think pots can be genetic but as of now there is no proof to back it up. I can trace a line in my family that seem to have dysautonomic symptoms but they were never diagnosed. Also there is no evidence of the known genetic conditions that cause pots in my family. I also started getting pots symptoms around 8th and 9th grade and was known as a nervous kid.

[daisy]

Thanks vemee - that's one of my biggest fears are the meds they may want to put her on. I know from experience they can be nasty and often make things worse. I guess it will be trial and error. You said your daughter started experiencing POTS symptoms with her anxiety. Was she actually diagnosed with POTS through a tilt test?

One thing I have noticed about her heartrate is that it spikes up when she stands but then comes back down relatively quickly as well. This may be why she's not exhibiting other orthostatic symptoms when she remains upright. For me, once my heartrate starts going up, it keeps on going and doesn't come back down easily. Maybe that will work in her favor.

I am trying so hard to stay calm but my stomach is churning inside.

[vemee]

She was diagnosed with a tilt table test when she turned 18. When we first noticed the rise in heart rate it on standing it was while she was during the time she had severe anxiety. We didn't get her tested for pots because she was on so many psych meds that we were told it might throw the results off and we didn't want to add another problem to what she was already dealing with. The anxiety needs to be taken care of first but if possible it would be nice if you could address both issues at once since by treating pots you might reduce the norepinephrine which in turn may decrease the anxiety. I know they have done studies that show pots is different from and presents itself differently from anxiety but I wish they would do a study of pots patients with anxiety to see if some of the anxiety is caused by neurotransmitter changes. Not all pots patients have the same degree of chemical changes and aren't affected the same.

That's Vemee's theory of the world of pots and should be taken with a grain of salt or gatorade. I hope things turn out well for your daughter and you.

[bkweavers]

Mack's mom said it best,

" Dr. Rowe, from Hopkins describes the anxiety he was experiencing, not as an emotional shortcoming, but as having a physiological origin due to the autonomic issues. When his HR went very high and his BP dropped out, Mack's body sent out tons of adrenalin to counteract all of that. The body perceives adrenalin ("fight or flight" hormone) as pure anxiety that seems to come out of nowhere. "

My daughter is 13, has POTS and experiences anxiety. My daughter takes an anti-anxiety medication already and Dr. Grubb prescribed a short-term med for her to take when she is at physical therapy. She experiences a lot of anxiety when trying to work on sitting up higher. Many people with POTS have anxiety because it is a part of the illness. As a lot of other said here, I think it would be a good idea to get your daughter tested just in case because you seem to have a strong genetic background.

As far as being worried and upset that she may have it, I know a little bit how you feel. I don't have POTS but when we were told it can be genetic, I right away worried about my other daughter, who is younger. For the most part, I try not to worry about her but concentrate on getting my other daughter better and keeping my whole family healthy emotionally and physically.

I will pray for you and your daughter. As you well know, POTS is the pits but anxiety can also be very difficult. So, I hope that whatever is going on with your daughter can be figured out. If it is anxiety, medications can be extremely helpful. I know of many people out there who take them every day and couldn't live a normal life without those meds.

Take care and God bless,

Brenda

[juliegee]

It breaks my heart to hear about all of these kids with anxiety. Looking back, as a parent, it was one of the worst symptoms to deal with......so out of the blue from my laid-back skateboarder. Mack's panic seemed so unreasonable and had so many physical symptoms with it.. "I'm gonna faint....I'm gonna barf." (He would do both.) He often had no choice but to lie down and elevate his feet to get more blood to his head. When a child is normally more "high strung", I'm sure it's even worse.

Daisy, I'm sure your cardio will find the right meds to treat your daughter. As you know it's all trial and error. One new med at a time, starting at a very low dose until she titrates up to a therapeutic level. Mack also had a STRONG negative reaction to SSRI's when he first tried them. He was OK, then within 30 mins. of taking it, he would become VERY lightheaded and would even vomit sometimes. He had an awful headache and had to lie down in a dark room and fall asleep. Mack's PT surmised that his serotonin level was so low, that his body "freaked out" when even small amounts were added. We stuck with it, taking a small dose only at night since he was rendered incapable of anything 30 mins. after swallowing the pill. He started with a tiny dose of prozac. We (probably mistakenly) decided that prozac was the problem and switched to lexapro. The reaction was similar, maybe a little better. Over time, the negative side effects went away and so did that awful anxiety. Hallelujah! We slowly titrated Mack's dosage up to 10mg. His anxiety was well controlled at that dosage. Later, Dr. Rowe upped his dosage to 20mg as we noticed it also helped with lightheadedness, increased gastric capacity, and actually helped keep him awake. He now takes it in the AM and tolerates it very well. So don't let her give up on an SSRI if it doesn't immediately help. It may actually make things worse for a bit before getting a dramatic improvement. The meds I take are very different from the meds Mack takes so don't limit her options based on your experience.

Mack was really, really sick at age 12. He missed most of 7th grade. He was forced to homeschool with me & UGA tutors for pre-algebra & biology. With the meds that I mentioned before (florinef, thermotabs, lexapro & a bunch of stuff to help him eat again) he was back to school in the 8th grade and he never even missed a day He steadily improved from 13 y/o to 16 y/o. He was even able to drop a few of his meds, Then, in May of this year, he had a set-back. He lost 20lbs and began vomiting and feeling lightheaded again. He didn't miss too much school and was able to keep up his schedule. He's back on all of his meds (higher doses) and we've added a few more: clonodine and concerta. He's functioning really well- already back at school. He's also the lead guitarist in a high school R & R band. He feels well enough to do all that. He needs a lot more sleep than most kids. We've learned that a lot of stress, too little sleep, and junky food with dairy in it will worsen his symptoms. If he heeds his lifestyle/med regimen- he's fine. Your daughter will be too! Mack's appt. at Hopkins this year happened a week before school started for him so I can relate to the timing issue. I hated to start new meds when he was away from me most of the day. I just let his teachers know & so far so good.

From observation, I've seen girls with dysautonomia have a slightly more jagged improvement pattern- I'm guessing from the changing hormones. They improve and then worsen sightly near "that time" of the month. I'm not sure if that's an issue yet, but keep that in mind. Some girls end up having to use meds to keep their hormones more level as that can also worsen dysautonomia. I'm definately a prayer warrior and I've got you both in mind. I know you'll untangle this and your daughter will be back to herself soon. Please let us know what you find out and how she's progressing.

Hugs-

Julie

[daisy]

You all are so great! I appreciate your kind words and support so very much.....I am still waiting to get the appt. time from the cardio but hopefully they'll call tomorrow and we'll get her on the schedule. She did really well today...heartrate stayed in the 80s mostly. I am reassured that it comes back down and that she isn't fainting, or getting sick on her stomach, etc. at this point. Hopefully, if it is dysautonomia, we are catching it at an early stage and can get her on meds to keep her under control.

She's nervous that she has POTS given what she's seen with me so I'm trying to reassure her as much as I can. It's tough though. I am glad I know so much about it and have access to the right resources.

Julie, I am so glad Mack is staying under control. As a musician and piano teacher, it makes me smile that he is in a band....that is awesome. It is kids who suffer with dys. that have given me strength throughout my illness and trying times. Kids who keep going and don't let it keep them down despite how they are feeling.

I will keep everyone posted....thanks again...I'm sure I'll be back for more support (and keep those prayers coming!)...mine are with you all as well...

[daisy]

Just an update.....daughter is seeing my EP cardio on 9/4. She is still having times of a fast heartrate (especially when stressed) and it does increase when standing sometimes but it is not consistent and fortunately doesn't seem to be affecting her ability to function.

She started school today and there was no air conditioning. She did ok, other than getting really hot. She played softball in the heat the other day too and was fine. So, I am praying that if she does have autonomic issues, they are mild and we can keep them controlled. I'm also starting to think she may have some inappropriate sinus tach which I also have. I guess the main question is if the anxiety is causing the fast heartrate or the fast heartrate causing the anxiety. We'll see what the Dr. says and I will push for the proper tests, I'm confidant he'll do them. Your continued prayers are appreciated and I will keep you all posted!