AllAboutPeace

res, that's great that you were able to get the data that easily (and without cost)! That will be very helpful for your appt with the cardiologist especially since you were able to keep track of your activities to correlate with your heart rates! Also, nice to have the reassurance to see that it does say "normal". Thanks for posting it on photobucket - I was curious as to what kind of a format it would be in. Nice work

Jen - Wow, that schedule you described would keep four people busy!! I agree that it's very hard to lose that independence and accept being vulnerable. While I would prefer that none of us were in this situation, it does give our family members an opportunity to develop qualities in themselves that they might not have even known they have. I know that I've seen my husband really step up to care for me, especially when I was at my absolute worst. {Not trying to pretend its all sunshine and lollipops , but it has helped me to see a side of him that I might not otherwise have seen} I was also relating to your description of living on adrenaline. I'm not a type A personality by nature, but I became one. I couldn't sit still for a minute (I seemed to bounce in and out of chairs rather than actually sit in them) because there was always something to do. I thought I was doing the right things by eating a healthy diet and exercising but I didn't really 'listen' to what my body was telling me- instead I pushed harder. Life was pretty stressful for me and I can see now that I didn't pay enough attention to that. My body has my full attention now... Hang in there!

Bunny, have you had an echocardiogram to rule out mitral valve issues? It may be completely unrelated to what was happening, but I know that a clicking sound can be audible through a stethoscope if there are mitral valve issues. I know that must have been very scary for you - I think most people would lose their mind if they experienced what Potsies do on a daily basis. It's crazy.

Yes, I can relate to this in a big way! It takes me really an hour before I'm ready to actually get up and move. The phone rang beside my bed yesterday morning when I was in mid process and my hr went bananas! It's pretty bad when a ringing telephone can throw your morning into chaos. I think this may be my punishment for always joking about my husband moving at a slower pace while I was multi-tasking all over the place

It is my experience as well that chest pain and shortness of breath are POTS related. I'm not sure if blood pooling is an issue for you, but I find that actually brings on symptoms for me moreso than the tachy hr. When I stand still for a minute, I start to feel lightheaded, lose my concentration/ability to focus, get dizzy, etc. and if I continue to stand my next symptoms are chest pain and shortness of breath. I have tested whether or not these symptoms are related to hr by doing deep breathing exercises which will reduce my hr by 10-15 beats/min. The symptoms that I listed still happen for me despite what my hr looks like and when I look at my feet and lower legs they are purple (because of the blood pooling there). So I think that is more of my issue. I also can't sit with my feet down because the same thing happens.

I hear you about all the work you did (to record what you were doing) only to have that valuable information be dismissed! I had a 48 Holter, but before I got the results, I ended up admitted to the hospital. The only initial feedback I got was from an emergency doc who said the results were "inconclusive"...whatever that means. Whatever was on that report changed his demeaner towards me instantly though. He had been somewhat dismissive prior to that. My appt with my cardiologist (to go over results) was cancelled because my care was taken over by internal medicine. At that point they were doing tons of other tests so that kind of got pushed aside. I have since found out there were some rhythm irregularities that showed up as well as the episodes of tachy. *I only got that information because the nurses that were monitoring me in the hospital told me about the irregular beats/rhythms they were seeing (and of course I was feeling). They said it isn't something they usually see and they were worried. Because of that info, I asked the docs who mentioned that there had been ECG changes and they were also consistent with Holter results. That's all the info I received. Anyway, I'm looking forward to hearing if other people have gotten copies of these. I agree that it is part of your medical information and it should be accessable to you. I would love to see mine...{I think } I'm glad you found your way to this group - I just got here too.

Alexis, I'm glad that he is seeing lots of doc's to try to figure this out. I think the cardiologist is a good idea to rule out any issues there. I have mitral valve regurgitation (mild) and some of the symptoms for that issue can be shortness of breath while laying down and palpitations. It can be quite a benign condition in a mild form. His doc would be have been able to hear a murmur when listening to his chest, though, so that probably isn't the issue. I hope you get some answers soon.

I just had a breast biopsy last week with a local anaesthetic. If I could go back in time, I would definitely have asked my doc for IV saline after the procedure and limit my water intake that day. The doc hit a blood vessel and based on how quickly the blood was coming out, he asked if I was on blood thinners. I hadn't clued in to the fact that all of my water consumption would produce the same effect. He did apply pressure to stop it, but ended up having to work through the blood coming out (for about 10 minutes while he tried to get the sample). As a result of the blood loss, I was knocked down for the week and am still not back to where I was. This one should be a much quicker experience for you. I had a cyst removed from the back of my shoulder about a year ago and it was such a quick, easy procedure. I found it was really not painful at all. Sounds like it should be a much easier experience that what you have already been through! I hope it all goes well for you. Next on my list is a biopsy of a nodule in my lung...not looking forward to that...

My son got 'bookworm' (game) on my ipod. He hates spelling and it's a spelling game, so I was happy that he wanted to get it. Anyway, I will pick that up to play sometimes when I'm very symptomatic and can't do anything else. It gives me that little bit of brain stimulation, keeps me distracted from my symptoms and I can be completely laid out while playing. It definitely isn't productive like crocheting or painting,..

Yes!!! My writing is awful unless I really take my time with it - much worse than before. Also, I'm ok with my speech as long as I am sitting with my legs up, but if I let them down for a few minutes, I find it harder to produce my words and keep my focus. When I repeated a standing test with my doc a few weeks ago, I warned him that my IQ drops dramatically (along with the blood that pools in my legs) when I stand up. Then, of course, he wanted to test it out. After he saw the difference it made, he said " Are you sure you didn't hit your head when you blacked out?"

I remember when the doc first mentioned "POT" syndrome and jokingly prescribed "potato chips" (lots of salt). My friends who are fans of marijuana agreed that potato chips (munchies) should be the perfect prescription for something called POT syndrome! Most hillarious sure - cure for POTS recommended by my well meaning father in law "if you would just eat some chicken..." He is totally serious and determined that this will fix me. I eat a vegetarian diet. Best success in explaining to my friends what its like for me to go out somewhere, with POTS. I ask them to remember what it was like when they were a kid playing musical chairs. As you get up out of your chair, your heart is racing and you are eagerly and anxiously looking for that next place you are going to sit down. If the music stops and you don't have a place to sit, you are out of the game (or in our case on the floor). Of course the crazy thing is that there is no one else playing and all of this is playing out internally. I rarely go out, but I did have to go to a funeral recently and my friends were all very accommodating in finding seats for me so I didn't have to stand at all. Thanks for posting this thread - I needed to lighten my mood!

Thanks, bananas. Maybe I should do that...I guess I'm being a little impatient. I did 15 mins once last week and that was clearly too much, so I did cut back to 10.

Issie, I'm glad you have found something to help you with this, especially if you experience it every hour! If I could give one gift to the world it would be that everyone should be able to experience a good night's sleep (well food is pretty important too...). Life is soo much easier to handle, no matter what you are going through, if you can have a good solid rest. Julie, I think having twin toddlers at the best of times would be a challenge! I can only imagine how difficult it must have been for you. As they get older they will come to know about your strength and courage and they will be shaped by that in their own lives. I hope you get things figured out soon.

I'm glad you posted this because I have been wondering what everyone else experiences. I am only able to do 10 mins on the recumbant bike right now and I have to go right to the couch or the floor to lay down for at least an hour afterwards. I feel so dizzy that I can't lift my head up. Once the hour is over, I can get up but am usually pretty tired for the rest of the day. My understanding from what I've read is that improvement seems to be all about getting within specific heart rate ranges and adjusting as you progress (???). I look forward to the day that exercising feels good again

Lenna, I love it!! My family has very patiently tolerated my love of music and singing - even though I don't have an ounce of talent Two of my favorite things to do in my pre-POTS life was going for a drive and singing at the top of my lungs and playing Rock Band with my son. Thanks for reminding me of that! I'm such a horrible singer that my elementary school music teacher made me mouth the words while everyone else sang

I have 'twinges' of chest pain that just last for seconds, but I also have chest pain that lasts for over an hour (usually after brief periods of being upright), so I wasn't sure which one to pick.

Julie, I seriously have no idea how you've been able to manage all this with twin babies! I'm glad you mentioned the rolling over thing... I wonder if that's what is happening for me at those times. I always have to sleep on my right side (with shoulders back, so as not to compress my chest) because I have issues sleeping any other way. During those times of vibrating/tachy I seem to inevitably find myself more in a belly down position when I wake up (???). I am thankful that the very worst (apnea/brady) of my sleep issues seem to be behind me at this stage (hopefully!) Those symptoms were helped immensely by salt and water.

I get that trembling too when woken abruptly. Is your heart rate elevated? I also sometimes wake that way through the night. I will wake up to the bed shaking (or my husband wakes me becaue he feels it) and when I'm alert enough to realize what's going on, I discover it is me causing the bed to shake/ vibrate. I feel my pulse and it is crazy high (I don't even notice it unless it's over 130, so I'm not sure how high it gets at those times). Like you mentioned, Julie, as soon as I start moving my limbs I can feel it settling down. I tried to reach for my bp cuff one night to see if it was caused by a drop in blood pressure, but I could feel it starting to settle down as soon as moved around a little. It takes me an hour of laying in bed in the morning before I'm really ready to move.

Thank you all for the links and videos - I will definitely be making use of them as educational tools! I'm not confident that any of my doctors would actually take the time to invest in learning about it, but I will try. Some of the doctors come and go in such a rush that I feel like I need to use flashcards with keywords just to keep their focus. My family physician would probably take the time, but I think he really feels like POTS is out of his realm. He has offered to give me any referral that I want and his is very supportive. Julie, thanks! I have a few more days to wait for the results. I totally relate to your comment about advocating for your children. My son was a preemie and had a rough start to life - it felt so natural to advocate for him (and without second guessing). I have an internist as my POTS doc. He diagnosed me, but has had no direct experience with it. None of the internists at my local hospital have had any experience with it. The cardiologist that I had been seeing passed my file over to him. The only neurologist in my area had a consult with me when I was hospitalized and after spending 10 minutes doing a brief exam,he declared that I wasn't having any neurological issues without even looking at my file or talking to my other docs. I will be doing a 4 hour drive to see an electrophysiologist, so I'm hoping she has some knowledge about POTS, or at least be able to educate me a little about the ECG rhythm changes I've had. I'm just thankful for all of the access and information that I can gather via the internet and this forum - I'd be so lost without it !

Anoj, I can relate to what you are saying about the car rides and the tips that Lyn mentioned have helped me a huge amount. I had symptoms (nausea, chest pain, shortness of breath, lightheaded) from even a 5-10 minute car ride and it would set me back for days. I discovered one day, by accident, that I was having lots of blood pooling in my legs when I'm sitting. I hadn't put my socks on yet and looked down at my feet to see that they were zombie purple. I almost always have my legs up when sitting because it reduces my symptoms and helps me to think (my IQ drops dramatically when my legs are down . I can now handle car rides without those symptoms because I always put my legs up (either in the back seat or tucked up in the front seat). So that, along with the salt and water has really helped me with travel. Those little modifications can help alot. Like you, I am a long distance from specialists, but some days I would just love to be face to face with a medical professional who knows more about this than I do.

Thanks, BellaMia! I'll try to find that DVD. I find that just telling them about about isn't very productive. They tend to look at my like I'm saying "whah, whah, whah" (like what Charlie Brown hears when his teacher talks)...

Hmmm, I am really curious about this, but I fall into the category that you mentioned, Issie. (I don't know what I'm doing ) I'm overwhelmed by all of it. I've chosen not to take meds for POTS, at this point, because I'm really just nervous to add something else to the mix. I started taking Stevia (natural sweetener) about a month before I developed POTS and that was the only change I could pinpoint in trying to figure out where POTS came from. I noticed, when looking back that my hr probably was starting to elevate around that same time. I didn't notice my hr, but I did notice being extra tired, having taken more baths than I had in years, started having a drink as soon as I got home for work on week-ends, and adding morning walks. It seemed like I was subconsciously trying to slow things down. I'll never know, but it may unfortunately end up being guilty by association...

I know that most of us have had frustrating experiences with medical professionals, so I'm hoping that someone will have some advice. I did try to look through old posts, but I had a hard time finding the right keywords to search. I had a biopsy today (for a breast lump). It was done by a radiologist and his radiology tech. I had been told that I shouldn't have aspirin for 5 days before the procedure, but other than that there was no preparation. All the radiologist had of my now quite thick hospital file, was a requisition (one flimsy piece of paper), which I'm assuming had no information about POTS whatsoever. So I explained to both of them that I have POTS and briefly explained (fluctuations in hr, bp, and low blood volume). I might as well have been talking about the weather... They explained the procedure: local anaesthetic, a hole in my skin to put the extraction needle in, then a large needle to withdraw 3-4 samples of tissue. I asked if there was adrenaline in the local, to which they said no. When the doc made the cut in my skin, the blood started flowing out. At this point, he asked me if I was on any blood thinners...good timing for that question, right!?!?! {I hadn't realized that the large amounts of water would have a similar affect - lesson learned}. Anyway, he tried to stop the flow of blood, then proceeded. As soon as he started digging around to find the lump, it started bleeding again. So, I'm laying there waiting patiently for him to get his samples while I can feel the blood now flowing down to my neck, down my side, and can see it all over his instruments. He took about 10 minutes to get the sample (maybe longer)! The lump kept slipping away from his needle. I told him that I can actually pinch the lump, so I could hold it for him, but he thought that wouldn't be a good idea. I again explained that it's not good for me to lose blood. There wasn't even a blood pressure cuff in sight. At that point he told me that I just shouldn't look at the blood...and gave me one of those patronizing smiles (you know the you're-just-anxious-you'll-be-fine kind). The sight of blood doesn't bother me one bit and I didn't flinch from what they told me would be very painful (and it was!). It is sooo frustrating and unfair when we are labelled that way. Then he got one sample and said "ok, that should be fine". What??? I had been told they needed 3-4 samples of tissue (plus he found a second lump today that had been missed on previous ultrasound and mammogram). So I know as I'm laying there that this procedure is going to have me in bed for days, so I told him that I want him to be thorough. He did then take a second sample. I managed to get off the gurney and remain upright long enough to plunk into my wheelchair. Is there a better way to educate the peripheral doctors that we have to see? I've tried to find a brief, yet comprehensive info sheet that I can print off and give to them. I found one from NINDs (I think) that is brief, but is missing alot of information. Has anyone found a way to explain POTS with some success? Any tricks of the trade?

Kim, I also wondered about the vagus nerve because of the fact that others had mentioned a reset after syncope. I'm only starting to climb up the steep learning curve though, so I'm open to any and all speculations! I'm not sure if I was holding my breath or not - it is possible I was - with 8 sneezes all together like that. I'm not familiar with the Valsalva Maneuver, so I'm going to look it up. Thanks!

Thanks for sharing these songs. I will definitely add some of these to my ipod: On my exercise playlist are: I Will Survive Don't Stop Believing Tubthumping ( "I get knocked down, but I get up again...the're never gonna keep me down") One of my favorite songs for POTS or any other life challenge is: "Now" by Dave Carroll. I strongly recommend it if you haven't heard it. It's more of a bad-day-with-POTS song, than a workout one.