daisy

So sorry for your loss I vote for a new kitty too.....it will bring you much joy and keep you company which is so important when we feel isolated. I don't know what I would do without my dog!

That's one of my biggest dilemnas. When I sit my heartrate and bp plummet and when I stand they both go way up. My understanding is that the blood pools when we are sitting too long as well and can cause a bp drop. I try to sit with my legs elevated and move around alot. Heartrate is often in the low 40s when I sit or lie down and I have had syncope lying down. Makes the POTS very hard to treat. Hope you feel better and do not catch what your son has....hope he feels better soon too.

I recently posted about the intense head pressure/internal dizziness I often get and was wondering if it could be silent migraines. It is believed I have the hyper form of POTS but my bp and heartrate also plummet so it seems I fall somewhere in between. I have another theory though I am curious about. Potsy people are often very sensitive to light triggers, noise triggers, etc. I wonder if we are sensitive to EMFs. I have noticed that when I sit at the computer for awhile, I will often start getting the head pressure. I will also quickly get it in a large store like Walmart where there are flourescent lights and high electrical fields. When I sit too long, my blood does pool (evidenced by the blue feet and legs) but bp does not always drop. Anyway, since our computer screens, TV sets, clock radios, stoves, fridges, etc. can give off EMFs, I wonder if we are sensitive to those? EMFs can cause headaches, muscle aches, fibromyalgia, neurological issues, etc. The everyday EMFs in our household electrical devices may not bother most people but we might be very affected by them. My computer is in the kitchen with my stove, fridge and other applicances, all of which are giving off EMFs. I am thinking I might get one of the EMF detectors. I remember about 15 years ago when we first moved into the house, we were concerned about a substation nearby. We borrowed a detector from a friend and that station was giving off less EMFs than my kitchen applicances (because the substation was too far away). Anyway, has anyone ever considered this or heard of a connection or had issues with this? Thanks.

Woo-Hoo!!! That's awesome news! So happy for you both! Thanks for sharing...

I think this is pretty much a normal thing. I've always noticed my pulse in my abdomen. During my stress test, I asked the Dr. about it. He said there is a main, large artery running through our stomachs and many people can see the beating, especially if you have a thin build. I remember one time, I was at my primary Drs. for something. I was lying flat on the table and my heart was racing like it normally does. My stomach was just pulsating - he was like, "wow, you have quite a heartbeat!" (of course, he is aware of my POTS). I don't think it necessarily has anything to do with POTS. It can be weird to see though!

Wow, very well said firewatcher. I am going to steal those lines to use with my kids. I am not a single mom but even with my wonderful husband's support, it is so tough with two teenagers and their moods and needs so I can't even imagine how hard it is for you Erika. I try not to look at everything at once but just conquer one hour at a time, one day at a time. The big picture with all the activities and chores can be so overwhelming. I recently discovered grocery delivery (or you can call and have everything ready and you just pick up) and also the meal places where you go once a week and either you can prepare a week's meals (very tasty too) or they will do it for you and you freeze them and just heat them up. Here are some links: dreamdinners.com dinnermyway.com I don't know if there are any of the above in your area but there are many others who are opening up all over. As moms, we want to do everything for our kids. But, firewatcher is right. In order for our kids to become adults, they need to take on responsibility and learn compassion. Teens are able to do this (although they may do it kicking and screaming) and are old enough to pitch in more. In the long run, I think it will help them. Just try to take one day and one crisis at a time and be the healthiest mom you can be...you can only do so much and overdoing will make you less effective. Hang in there.....all the best to you.

Thanks for your replies.....I'm not sure what's going on because when I take my bp it seems good. But, I have always been one to have orthostatic symptoms even if bp and heartrate are stable so it's hard to tell. I've been in a bad flare for about six weeks now so that could be why it's acting up....it's one of my worse symptoms though. Really put me down for the count..

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!

Does anyone else experience extreme dizziness with silent migraines from POTS? I don't mean complete vertigo but the feeling that you're starting to spin but you're not. Or that you are dizzy on the inside but the room isn't moving. Happens in quick bursts and is often accompanied by extreme head pressure (not sinus) but no pain. It has been suggested to me these may be silent migraines and I'm looking for feedback from anyone else who may experience it. Thanks!

I feel for you I don't actually pass out but whenever I have to have a bowel movement or feel that urge, I get very lightheaded, nauseous, pulse racing, etc. My Dr. says this is because of the vagal nerve. Sometimes, it's worse than others. It's really bad if I haven't gone for awhile....then I will be very sick until I do. Lately, I have been very nauseous whenever I eat and waking up in the middle of the night feeling like I'm going to vomit also having the vagal symptoms. But, I have been in a bad flare so I guess it's just par for the course. It is traumatic to think this might happen in a public setting. I often get the vagal symptoms if I'm out eating and the food starts to move through. It's very frustrating. I guess the best thing to do is to wear a bracelet saying you have vasovagal syncope so if the worst happens, people will know what's going on. And maybe use the handicapped bathrooms that have a handle to grab onto. I wish I had a better answer but I do empathize with what you're going through.

Hello and welcome....I am sorry you are going through such a difficult time. I just want you to read back something you wrote: "I am having to rely on him to do things and fight with him for what I need done, or to accept things that really aren't safe and sanitary (roaches and stairs)." If you have to fight for something you need, then is that really love? Remember, in sickness and in health. Of course, our significant others get frustrated and overwhelmed but we should never have to fight them for what keeps us healthy and safe. I know it won't be easy but I think you have answered your own questions in your response. All the best to you.

I realized that my "family vacations" should really be called my "children's vacations". When they were over, my hubby and I needed a vacation. But, there were many happy moments in between the chaos and I hope we gave our children happy memories along the way. Glad you got home before the storms hit - there's no place like home

I started getting hives caused by touch a few months ago. Anything I touched gave me huge itchy welps. Drove me bonkers! Other times I just itched all over for no reason. The autoimmune doc immediately diagnosed me with dermographism by doing a simple scratch test. He knew the connection between POTS and MCAD but said research is in early stages and there is a ways to go. I have been much better since starting Zyrtec. It's amazing to me how many of us suffer from these skin issues...just proves the point of the connection I think.

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...

I often have near syncope episodes when sitting at the computer too long or playing the piano. I had to stop teaching because I fainted on my students (not a good thing). This was due to sitting in place too long - if I look down at my legs during an episode, my feet are purple and my legs splotchy so the blood is pooling and not getting back to where it needs to go. I try to frequently stand up as much as possible (then the bp shoots high - it can't decide what it wants to do! I avoid the movies at all costs because of the sitting and loud noise and stimulation but I just couldn't resist seeing the latest Star Trek movie since I am a die-hard trekkie (although I draw the line at dressing up as a Klingon warrior princess and visiting conventions). Anyway, I had a tough time...had to get up several times to get the blood pumping but it was worth it! I also notice my legs go really numb when I sit alot...very annoying. All the best with your pregnancy and I hope you are feeling better now.

I also am not hypotensive while standing but like you get the orthostatic hypertension. There are times I can go low while standing but more often lately, I go high. My understanding is that I probably have the hyperadergenic form of POTS but we haven't definitely confirmed that. I also too go really high with heartrate and bp while talking.....very inconvenient. I hate that - that's one of my toughest symptoms to work through. I mean, we have to talk don't we? All the best to you with your upcoming appointment. Hope you get all the answers you're looking for

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.

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.

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...

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...

I recently was diagnosed with dermographism due to overactive mast cells releasing too much histimine. It is believed I have the hyperadregenic form of POTS so there may be something to this connection. Mast Cells control the release of histimine and this whole process is controlled by the autonomic nervous system so it doesn't surprise me that so many of us experience itching. The dermographism causes hives from touch....too much histimine being released. It drove me crazy - I itched all over no matter how slight the touch. The auto-immune Dr. I saw had actually heard of POTS and the mast cell connection which was a pleasant surprise. I am now on Zyrtec once a day and it is controlling the itch.....the Dr. said I could try to wean off of it but for now since it's working I'm leaving well enough alone!

I get this often after eating a high carb or large meal and it will sometimes lead to a near syncope episode. My Dr. believes it is postprandial hypotension which is a large blood pressure drop after eating due to the blood pooling in the abdomen and the heart working harder to digest the large meal (I hope I explained that right). I try to eat smaller meals throughout the day and avoid the processed carbs or high sugars because I know I'll feel lousy after I eat those things.

Hello - I was fortunate this Spring to have experienced a wonderful few months of feeling pretty much "normal". My symptoms were under control and I was exercising and able to get out like I used to. Unfortunately, during the last six weeks things have really flared again. I have no doubt the cause of the flare was stress but I am concerned about a new symptoms I am experiencing. I have had syncope and near syncope in the past and am very familiar with how that feels. The last few weeks, I am experiencing collapses but they don't seem to be syncope. I can be in the middle of something (like walking down the hall, putting dishes away, cooking, etc.) and all of a sudden, with no warning at all, I feel like this giant hand is pushing me downward and my body just gets really weak and down I go. It's like a very strong force pulling me downward but I'm not lightheaded or sick feeling or anything like I would get with usual syncope episodes. This happens when my heartrate seems to be under control as well. I don't lose consciousness, I just fall down wherever I'm at. It's very strange and starting to become scary. This is happening at least once a day, sometimes more. I also had an odd occurence with my knee a couple of weeks ago. Out of the blue, while walking, the entire circumference surrounding a large area of my knee (front and back) just went completely numb and my leg buckled under me. I didn't think much of it at the time, but with these other episodes, I'm starting to get a bit concerned that something neurological may be going on. Has anyone with POTS experienced episodes of falling like this that aren't bp or heartrate related? Thanks.....

Me too! Especially if I am in a large store like Walmart or Staples - something with high ceilings and flourescent lighting. I will only shop at these stores if I have limited items to get and during off hours when crowds and lines are low.....

I had fainting episodes in my teens but it was chalked up to low blood sugar. Two episodes happened when I was standing in place for a long period trying on prom dresses. Happened again in the same scenario trying on wedding dresses. Had on and off vertigo episodes and lightheadedness with no real reason. Tachycardia started in my late 20s after the birth of my second child and things went downhill from there. It took several years to get to the right Dr. (an EP cardio for me). I was just told I had inappropriate sinus tach but symptoms kept getting worse. POTS was diagnosed after the EP did a tilt test....other heart arrythmias developed a few years later.