Another %$# Er Trip, With Ambulance

[mkoven]

Argh. LAst night around 245 am, as I returned to bed after a bathroom trip, I got chest pain, and much worse than ever before, pain in my left arm, shoulder and neck-- a nervey achey pain, and nausea. Despite having had a full cardiac workup, this seemed new. My spouse is out of town, and my mom is here. So I woke her up, and we decided I should go in. Esp since she doesn;t know her way around, and b/c of the symptoms, we called an ambulance. I brought my records from my recent hospital stay. They did an ekg which was normal, gave me compazine and sent me home, since my records from the clean cath were so recent . So how do we ever know what's just autonomic with symptoms like this? Since I've had essentially normal results to every heart test, when can I decide it's same old same old? I'm so worn out by ER trips, the drama, the worry. But it also seems dumb to ignore symptoms like this, esp if they're new. the only thing i can think of as a trigger is my wacky hormones...

and I'm really out of it today from the lack of sleep and the compazine, which helps nothing. just dragging. and freaked, annoyed, beaten down.

[jbrian00]

I feel for you. I've had a couple ER visits because I experienced new and unusual symptoms. Once I thought I was having a stroke, combined with high bp. The other was a very rapid hr during exercise which freaked the **** out of me. The first time I woke up shaking uncontrollably my parents took me to the ER. Anytime something new or something more severe than normal happens, it is natural to panic, and the panicking, unfortunately unavoidable at least for me, makes things worse. And then you spend an absurdly expensive ride in the ambulance to the ER, just to have the ER doc pop a pill, give you a pamphlet on anxiety, and send you on your way. But my motto is that it's always better to be safe than sorry, especially with symptoms that in your case can be signs of a heart attack or something. And it is so difficult to know whether your symptoms are "benign" dysautonomic symptoms or something severe that requires urgent medical attention, especially for symptoms that you've never had or are more severe than normal. Hopefully you will come across the right mix of medications that will help prevent symptoms from becoming severe like that.

[mkoven]

thanks. it feels like my symptoms keep morphing and/or getting progressively worse! i'm just afraid that going to the er will be like crying wolf. and one day there may be a wolf-- that I or they ignore. and since no one is really up on ans stuff, it's so hard to tell. ans symptoms look/feel/sound like the big guns so often.

[Csmith3]

If it makes you feel any better, I go for the opposite strategy but it probably leaves me in a worse position. I occasionally get some really bad chest pains. I've never had it checked out (have hospital phobia - keep telling myself I'll get it checked out next time it happens!) and I'm left wondering if it's something really serious or not. It then takes some time for me to get my confidence back that it won't recur. I don't think anyone would criticise you for getting chest pains checked out.

There seems to be quite a few of us here of a similar age (mid 30s to mid 40s) with long term POTS. Like you, I wonder what's in store next as I begin to realise that most of my health issues come down to POTS or EDS.

Hope you recover soon, best wishes

[Caprice]

I had/have a similar experience. Now that my heart cath is totally fine with absolutely no blockage I no longer go to the ER. However, my cardiologist gives me Lopressor just for times like this. I normally take Toprol XL 2X/day. So if I am having problems I take Lopressor on top. It takes approx 1 hr to kick in. Perhaps you could do the same. Is your heart cath completely clear or does it show any blockage? I might feel differently if my cath showed any blockage.

Caprice

[mkoven]

It was totally clear. Now from what I understand, there can be microvascular blockages that a cath can't see, but that's a diagnosis of exclusion. I did have a positve adenosine thallium stress test, which now I'm told was a false positive-- from my breast tissue. The cath I guess overrides the stress test. My echo showed minor abnormalities that no one was concerned about. So if I had a clean cath does that mean i'm bullet proof? I guess it really lowers the chance of a heart attack, but those symptoms are so spooky. It does feel like the heart is affected, even if it's "just" autonomic...????

[starry16]

Just wanted to lend a note of support. I struggle with this too - especially back when I didn't know I even had POTS and that it could cause chest pain. but yes - is there a wolf or isn't there? A hard decision. I guess it's better safe than sorry, but given insurance issues, the ambulance/ER can be a bit of a crazy solution! Perhaps a middle ground would be to get thee to an emergency room and then sit outside - if you feel worse, you go in, if it passes, you go home!

I know it sounds crazy, but hey, whatever works..

[jbrian00]

Just wanted to lend a note of support. I struggle with this too - especially back when I didn't know I even had POTS and that it could cause chest pain. but yes - is there a wolf or isn't there? A hard decision. I guess it's better safe than sorry, but given insurance issues, the ambulance/ER can be a bit of a crazy solution! Perhaps a middle ground would be to get thee to an emergency room and then sit outside - if you feel worse, you go in, if it passes, you go home!

I know it sounds crazy, but hey, whatever works..

I've done that several times before when I first developed POTS symptoms and was having panic attacks all the time. My stepmom would drive me and we would sit outside the ER. Most of the time it would pass and we would go home, but simply being near an ER can bring relief. Just don't try to drive yourself if you are too distraught to drive.

[delphicdragon]

I hate hospitals. (But I work at one...) There's only one problem with this, if you call your doctor and tell them what's up, they call the ER. And if you don't show up there, the doctor or the nurse walks down the hill and takes you to the ER to get checked out. It's a double edged sword when the ER docs are your colleagues.

Problem is last time I was "forced" to go the ER (had an episode at work and apparently looked AWFUL) there was stuff wrong. I had a high D-Dimer (clotting factor measurement), low potassium, sodium, and phosphate. Had to have a CT scan to rule out a blood clot. And of course the doctor brought in ALL of the med students (who I see at work every day!! GAH!!! to watch my heart rate jump from 115 to 160 when I stood up.)

What I'm saying is, it's better safe then sorry. We know our bodies better than any doctor ever could.

Case in Point: I have a nasty habit of breaking bones (grumble collagen disorder grumble) and the breaks don't show up on X-ray for three days. I know I'm broken but the doctors can't see it. So they splint it and give me happy meds and I go see my Ortho in 3 days and he tells me it's broken and I need to stay in the splint for 8 weeks, not three.

If you are concerned, GO! Yes, it stinks to be treated like a mental case (gotten that one too after I walked in with a dislocated hip that DID show up on X-ray). ER's are only good for acute stuff. Chronic stuff can't be controlled in the ER unless it's an acute exacerbation (there I go talking like a doctor again), but it's better to know you're not having a heart attack or a whatever, just for the piece of mind.

Sara

[dawn]

Just a thought:

You can get a spasm in your coronary arteries. It feels like a heart attack.

Dawn

[Guest tearose]

I think we learn over time what we can manage ourself and what we can't. New symptoms do need attention though.

That being said, I now have had three seriously bad spasms in my chest that are suspected may be variant angina, the spasm that dawn mentions.

It is severe and brings me to the floor. The weird but good thing is that my spasms only last 10-20 seconds. I was wiped out afterwards but never made it to the ER. They were severe and I was very concerned. (I can only come up with lack of adequate sleep possibly contributed to these.)

I generally try to avoid medical intervention because of my experience with the absolute inability of "regular staff" to diagnose and treat me. Sad but true. I think we all dread the look on the ER staff faces when we start rattling off our various "symptoms" of a disorder they typically know nothing about. I wait to see my pcp and only if I really feel like I am unable to manage at all do I go to the ER.

I never thought of sitting outside the ER so we can buy time and see if these types of problems pass or not. I think this is something I will do if I am ever unsure which way things will go. It seems like a very reasonable strategy!

I think you should not worry about crying wolf. The ER staff may not act kindly or sympathetic but I don't think they would ever deny the treatment you need when you go there!

I am sorry things are so unpredictable and frustrating and that you have these new symptoms.

Is your PCP giving you any new ideas?

best regards,

tearose

[mkoven]

Thanks everyone for your support that it's not overkill to go in when stuff like this happens. My pcp is as mystified by this as anyone. He's a good guy, but not sure he can add much here. I have an appointment at the Cleveland Clinic in two weeks and hope to get some answers. I do have an ans doc in Chicago (3 hours away), but she is very hard to reach, and then not in a crisis. And she's not a cardiologist.

I asked the er doc what could be causing my symptoms and he was honest, sayong he didn't know. He didn't give me the anxiety diagnosis at least.

i'm someone who really likes to understand WHY something is happening. The standard "it's not your heart, it's your chest wall" does not cut it, and I don't believe it. it ain't my chest wall!

For those of you who've had spasms, how were those diagnosed? What causes them? How do you treat them? One doc once suggested this as a possibility, but didn't say how we would know. He sort of threw it out as one of several possibiilties.

My gut tells me that I get these dips in bp that throw something cardiac into a tailspin-- nothing that shows up on an ekg or on bloodwork, but that it is my heart that hurts from too little blood pressure. But that is just a hunch. Maybe the vessels are spasming as they try to hold on to whatever blood they can? One doc told me that it is unusual for healthy arteries to spasm. I guess the issue is I'm used to low bp causing cp when I'm awake. I often get this as my midodrine wears off. But if I'm lying down in bed, one wouldn't expect that, right?

It's just so hard to know. And I don't want to end up doing any damage to myself, but I agree, er docs can't help with chronic stuff.

[delphicdragon]

My gut tells me that I get these dips in bp that throw something cardiac into a tailspin-- nothing that shows up on an ekg or on bloodwork, but that it is my heart that hurts from too little blood pressure.

YES! That's exactly how I've described the chest pain. I sort of see my heart as a water balloon. If it's completely full of water then it's really easy to squeeze and manipulate (that's the heart with enough blood in it). If the water balloon is half full of water, half full of air and you try to squeeze it, it's very difficult to squeeze and the air tries to displace the water and vice versa. (NOT saying there is air in your heart) So I fully blame the "angina" on too little blood, either due to my heart beating too fast or not getting enough blood in there in the first place.

Sara

[momofsara]

I totally understand the aversion to ER visits. My Sara has made repeated trips to the ER only to be treated as if "why are you here taking up our space and time?" But also many times only a day or two after she ends up being admitted for 2 weeks or more for severe symptoms. Its happened several times, so I wish they had a way to understand that we dont come in just for the fun of an ambulance ride through town. As said before, you know your body better than anyone else, and if it feels wrong, it probably is wrong!!!!! I've had to "intervene" with Sara and go ahead and call the ambulance for her against her wishes. Then it ends up that shes admitted for a lengthy stay, so sometimes "Mama knows best" Anyways, always go with your "gut" feeling and get things checked out, after all, its better safe than sorry as the old saying goes..... ((((HUGS)))) Susan

[MomtoGiuliana]

Just want to lend more support. I think you have to go with your gut with symptoms. If you are wrong that is not your fault. Unfortunately so many of our symptoms mimic heart disease and heart emergencies. After it happened I started wondering whether I would have gone to the ER with the same symptoms my husband had when he was having a heart attack. Now that this has happened to him I think I would err on the side of caution. Those of us over age 40 especially do need to be aware that heart disease can be a real possibility.

In my personal POTS experience, scary symptoms (chest pain, heart irregularities, severe dizziness) are short-lived (less than 5 minutes). If it goes on longer than that I would want to start to take action.

Hope you feel more stable soon.

Katherine

[lorrie]

I think you did the right thing going to get checked out. Anytime something is different or more severe, it is smart to get it documented. Most times it will turn out to be more of the same, but you never know.

I was visiting a friend in a rehab center after she became paralyzed and I began having severe chest pains...it felt like an elephant was sitting on my chest and I was sweating profusely and my arms went numb...very scary! A nurse that was taking care of my friend called an ambulance without asking me and I was glad she did.

I ended up in the hospital for 7 days having a heart cath, nuclear stress test, nuclear swallow test, scans, MRI, and tons of other tests. I have a 50% blockage and was the first time I knew I had CAD. I got a fantastic cardiologist out of the deal who understands POTS (he actually works closely with my POTS doctor) and feel like I am finally understood by at least these two wonderful docs.

I would not have chosen to have all these extra tests, but very glad I did now. I had been avoiding doctors for years because of the frustration that had built over time...you never know when that one great match will turn up. I am so happy with my cardiologist that I brag on him all the time.

He gave me a prescription for nitro patches and nitro pills. I was afraid to use them, but at his encouragement, started using the patch on days I have that achy heart and it has helped. I actually used a nitro pill a few weeks ago when I again had the sitting elephant pain and it helped greatly.

[goldicedance]

Michele,

How awful! I don't really think I or others here are in a position to tell you whether you should go to the ER or not. I think that is a question only you can answer based upon your doctor's input.

Did the ER doctors contact your regular cardiologist?

Did your cardiologist, now that you've had a clean cath, give you any guidelines?

Just some thoughts.

Lois

[mkoven]

It's funny. After all this, I'm not sure I have a cardiologist I can call my own! I've seen plenty of cardiologists, but none who is responsible for my ongoing care. I'm going to cleveland clinic to be seen by Dr, Fouad Tarazi in two weeks. But i'm not sure she will be "my" cardiologist, as I will need someone local.

The trick is finding someone knwledgeable about regular heart stuff and ans stuff.

[ajw4790]

Hi,

Sorry you had another ER visit. I hope that when you go to Cleveland you get some answers and are able to find someone closer to you to help with the day to day issues. As far as going or not going to the ER, I understand the dilemma, and liked everyone elses responses. It is better to be safe than sorry. The idea of going and waiting outside and if it doesn't subside etc. then going in seems like a good idea if you are worried about going to much. But, you would have to have someone with you etc. Also, if anything is different from previous attacks it would probably be best to go to the ER.

I hope that things calm down for you!

[mkoven]

Well, last night, at around the same time as Tuesday night-- 245 am, after a trip to the bathroom, I lay back down, and started up the same symptoms. Left sided chest pain and pressure, nausea, radiating to left neck, arm, shoulder.Same nervey, achey feeling. Sense of doom. Not sure exactly how long it lasted. At first it was constant. Then it came in waves.

Since this was the second time, I decided not to go the the er--thinking the same thing would happen again. In other words, in addition to feeling stupid, dragging myself and spouse out of bed in the middle of the night and getting no more sleep, I'd get to the ER and they wouldn't find anything. I eventutally fell back to sleep, dreaming about doctors and heart tests.

Was that dumb to stay home, as I went to ER for same thing 3 nights before, with no clear answers and a normal ekg? Or a reasonable call?

It did feel just like the other night.

I really wish I knew what this was. If it was low bp, then why would I feel it lying down? Maybe it is some sort of artery spasm?

The trick is that I'm not a doctor. the only thing i can think to do now is call a cardiologist (which one? I've seen so many?) either by paging or waiting till Monday and ask. There is one that I saw in Chicago whom I liked. I suppose I could ask for another event recorder? (I had one in December. Don't know if insurance will balk.) Or ask how he'd know if it's a spasm? Ask him to rx nitro and give it a try the next time it happens?

So I'm both relieved and disturbed that I didn't go back to the ER last night. I hate these troubling symptoms.

[lorrie]

I awaken often having POTS episodes. This is one area where I seem different from most who post on this site. My hr will be out the roof and my bp will bottom out. For years, I was told I was waking with panic attacks (no surprise there...that is the first answer you get) but my POTS doctor said it is actually not that uncommon to do this.

The thing that finally proved I was not "crazy" was when I was having a sleep study done and was hooked to all these monitors for my heart rate, breathing, brain waves, etc. and woke up in a major POTS episode. The sleep tech ran in the room and flipped on the light and asked me to sit up. That was not a good idea because I fainted into a pile in the floor. I normally lie still and wait for it to pass. However, he was able to see it happening before I felt it because of the monitors.

He wanted to call an ambulance, but I was able to convince him I do this often and I wasn't going to die. The embarrassing thing is that when I awaken doing this, if I don't lie still, I have a loss of bowel control. Here I was with this cute little guy tech and in such a mess...I had to wait until I felt better and then take a shower in the doctor's locker room.

The reason for telling this story is to help you realize that you can have a POTS episode while lying down. After my shower, the tech thought I would be too awake to continue the sleep study...boy is that funny...all I want to do after an episode is sleep. I convinced him to hook me back up and we went on from there.

Needless to say, I was diagnosed with sleep apnea and had some great documentation for my POTS doc as well...two for one!!

[mkoven]

Interesting. I do have apnea, and sleep with cpap. But I don't think that was a trigger. I think my apnea is well controlled with cpap, as my daily readouts from the machine are always good. And then this started, not from sleep, but after returning to bed from bathroom, and trying to fall asleep again....

Waiting for a call back from a cardio...

[goldicedance]

what feedback do you get from your CPAP machine? I get nothing. Let me know, please.

Lois

[mkoven]

I have a resmed s8 elite. I can't speak for other machines, but if you hold down left and right buttons on mine, you get to the efficacy menu. It will then tell you the number of apneas and hypopneas for the day, week, month, etc. www.apneasupport.org is a good resource. Maybe someone can tell you how to access efficacy data on your machine, if it's different. Not all machines are data capable, but most newer ones are. They want you to have an ahi (apneas + hypopneas per hour) under 5. I feel best when I'm under 2, with all those being hypopneas (shallow breathing) and no apneas (no breathing).

[lorrie]

The sleep apnea isn't a trigger. Just a coincidence that I was at the sleep center when it happened. I was glad I did because they had all the info from the monitors to see what my hr and stuff was doing.

I awaken with a POTS episode about once or twice a month. I did this before and after the CPAP machine. My machine helps keep my apnea under control.