E.R. visit last night. Sooooooo not worth it!

[LindaJoy]

Hi, everyone,

I had to give in and go to the ER last night, because I was having POTS episodes every 15 minutes. I would begin with my blood pressure going up, with the feeling of heat going to my face and fingers running up my spine. Then, my heart would begin pounding rapidly, then go irregular. After that, I would start shaking uncontrollably and have to pee really bad. Then, all of a sudden, it's like the vaso-vagul kicks in and my blood pressure drops, the shaking suddenly stops, but I feel quivery and still have to pee. After I pee--can I use this word, or should I say urinate?--Anyway, after my trip to the bathroom, where I pee like I've drank a gallon of water, it all starts again. I did this from 9:15 last night until after 11:00, when we called my family doctor, who said she wanted me checked out, I guess to make sure I wasn't getting dehydrated.

Question one: Does the above sound familiar to anyone?

Now, onto the hospital visit. I told my gp that I didn't want to go. She insisted, so I went. The ER doctor came in and said he had downloaded my hospital file from the last ten years which showed visits to the ER where they diagnosed anxiety and panic disorder. I told him that I just got back from Cleveland Clinic, and they found that I have POTS. One, he didn't know what POTS was, nor did he care. He didn't even ask about it at first. He asked if I've been anxious since getting back from Cleveland. I said no. Then, he asked me what sleep medication I wanted to be sent home on. I said none. He asked why. I said that my Cleveland doctor told me not to take meds like that because they mask my POTS symptoms, and she doesn't want me to mask them. I told him I don't have just anxiety, I have POTS. He burst out with, "Then why do you take Zoloft?" I told him that Dr. Fouad said that Zoloft is good for the vaso-vagul response to POTS, that it's used for more than depression. He wouldn't listen to anything I had to say. He just kept saying that I have a history of anxiety, according to my records, and that's what he's going with. After he left, the nurse came in, and I told her exactly what I thought of the doctor, then I told her all about POTS. She listened and became more helpful than the doctor. Then, my husband asked if the doctor was going to give my diagnosis as anxiety. She said no, he was going to write depression. We went off. Then the doctor came back in. We said, Do you even know what POTS is? He hee-hawed around, then said, "Uh, it's some kind of disease." Anyway, my system calmed down after awhile, surprisingly, then we went home.

This morning, I called the hospital and registered a formal complaint against the doctor. I told the woman I spoke with all about POTS, and she looked it up on the internet, downloaded some information, and is going to send my complaint and the POTS information to the hospital's head doctor, with a suggestion that the doctors get some training on POTS. I also asked if my records with the hospital could be somehow changed or gotten rid of, as I think my past wrong diagnosis will affect my future care. She said she'd look into it and try to help as much as possible. I really hope this helps.

One other question. I had a tall glass of milk yesterday with whey protein--my blood results showed that my protein is low. I know that dairy really pulls blood away from the heart and stuff to get digestion going, so do you all think that the dairy could have caused my POTS problems last night?

Do any of you have low protein with POTS?

Thanks. Any help will be greatly appreciated.

LindaJOy

[Ernie]

Hi Linda,

I have symptoms similar to yours. I have to be careful when I urinate because it triggers the syncopes.

I need a high protein diet otherwise I am much worst. I don't know if I have low protein because nobody told. I don't know if I was even tested for it.

I am really sorry for what happened to you at the ER last night. It makes me upset to read how badly you were treated.

Normally your new POTS diagnosis should replace the anxiety diagnosis. Doctors just "like" to put us in psychological categories because they just send us home without treatment and they don't have to figure out what we need.

Ernie

[morgan617]

Hi Linda, I had an ER doc tell me there's no such thing as inapropriate sinus tach and my diagnoses was somatization disorder. I was livid. I also called the head of ER and got an apology letter in the mail, no bill and an amendment to my record. I get your symptoms almost exactly. I must pee 3 gallons in an hour. And that hot flushing is so gross, let alone the bp spikes and arrythmias. My episodes typically last over an hour. I just wait them out, but they are becoming so frequent, I have them everyday now. And out of the blue, which is really bad, if I happen to be somewhere, which, fortunately is rarely. I know if I don't eat protein, I feel really crummy, but I never feel like eating and protein sits like a lump in my gut, so it's a conundrum. I never know what triggers my episodes, I can't seem to pin them on anything. A lot of times I'm sittihng on the couch like a spud and bam. So I can't help you there. I'm really sorry about your experience. I've told my hubs no ER unless I'm cold and stiff. I never go to them anymore. (famous last words) hope you feel better soon and get an apology letter. I know he wasn't sincere, but at least it must have galled him to have to do it, so I got that satisfaction.... morgan

[dawn]

Hi Linda,

I get the same episodes. I have went to the ER a couple times. They do an EKG, some blood work and tell me to see my regular physician.

My doctor says when we have such a large release of adrenaline (autonomic storm) we frequently have excessive urination ( I also get diarrhea). He says those are normal responses to the hormone as is our tachycardia and flushing.

I know what an awful feeling it is, I'll jump up and say here it comes. It lasts 1-4 hours, then I'm usually so exhausted I sleep. I really hate it when I'm alone or when it hits during the middle of the night.

I no longer go in when it happens. It's never helped just caused more stress. My diet is terrible. I did see a dietician and she said we need 50 grams of protein a day. I don't get close to that. I was trying instant breakfast a couple times s a day but have fallen off that wagon. I think the episodes are random, I can't seem to correlate them to anything.

Sorry this is happening to you.

Dawn

[RunnerGirl]

<<I would begin with my blood pressure going up, with the feeling of heat going to my face and fingers running up my spine. Then, my heart would begin pounding rapidly, then go irregular. After that, I would start shaking uncontrollably and have to pee really bad. Then, all of a sudden, it's like the vaso-vagul kicks in and my blood pressure drops, the shaking suddenly stops, but I feel quivery and still have to pee.>>

Linda, I'm sorry if I've asked you this question before, or if you've answered it in another post, but have you been worked up for pheochromocytoma? What you are describing sounds very much like a pheo episode. Granted, many of us with hyperadrenergic variants of ANS dysfunction demonstrate pheo-like symptoms, yet have had the adrenal gland tumor definitively ruled out. Pheos are quite rare. But if you haven't yet done this, I would suggest you get with a good endo ASAP to have it properly ruled out.

I hope you are feeling better today!

Best,

RunnerGirl

[dizzygirl]

Hi Linda Joy

I am so very sorry about your ER visit. I am glad that you filed a complaint though that is good.

I suffer from alot of the same symptoms you have mentioned.

About the peeing, is there anything that you can do to control it? I am curious, because i have bouts where i feel like I have to pee like every 10 minutes, and I no sooner pee and I feel like i have to pee again. It typically lasts a couple of hours then goes away.

Is this because of the Pots??

I am assuming that it is....

Well I wish you luck and hope that you are feeling better soon

Linda

[ethansmom]

I am sorry to hear that your ER experience was so awful. I have had many times where I wanted to go, but remembering my own early experiences and those of others here stops me every time- and I have gotten away with only one trip in the last 3.5 years. That was horrible what the doctor said, but I am so happy that you decided to take action- the more they know, the better this will be for all of us one day.

In regards to the peeing a lot and shaking- that is very interesting. I have food sensitivities to dairy and gluten, and eggs. If I consume to much of any of those things, or in their pure form (i.e. a tall glass of milk!) I will almost always have a reaction similar to this within 24-48 hours- though mine usually includes bowel movements every few minutes for a couple of hours in addition to urinating. I get shaky and my heart beats very rapidly as well...and it always comes on very suddenly. Then, it will disappear as quickly as it came, as if the culprit food had exited my system and once it was gone, I'd be fine. I've learned to control these episodes by eliminating (or cutting back on) the problematic foods. It could be one of many things, but that sounds so similar to what I experienced in the past...I hope you can get it figured out and that the doctor you saw gets a good lesson about POTS!! Best of luck!!

[JLB]

I don't do the ER thing anymore, either. Last time, the monitor recorded literally hundreds of HB irregularities - PVCs and arrythmias - and the "doctor" there said he doesn't believe in treating PVCs. Sent me home without even a word of advice.

I'm SO glad you filed the complaint. So did I, but never heard a word from them.

As for your symptoms, yup, I get most of what you're talking about. I don't have (as bad) a problem with having to go to the bathroom, that's the only difference.

Really mad here, and sympathizing with you for the rotten ER visit -

JB

[calypso]

Linda Joy,

I also get episodes like this. They started about a year after I developed POTS. I get a flushed face, feeling like every drop of blood in my body is in my head and that it's going to burst, accompanied by tachycardia, a choking sensation and dizziness. It tends to last about 5-15 minutes. Then I also have to urinate, get completely exhausted and take a long nap. (Last Saturday I had this happen, then I slept for nearly three hours.) I tend to have these episodes when I have my menstrual cycle.

My docs are puzzled by it and think it's either atypical panic attacks or some sort of hormone imbalance/surge.

I also never go to the ER. Since I do also have a history of anxiety attacks from when I was 18, I also get that diagnosis. Well, I already have clonazepam, and that's all they would give me anyway, so I usually just hug my daughter or if my husband's home, he holds my hand until it passes. If he's not here, I call him or one of my sisters in case I faint or something. They know to call 911 if I am unresponsive.

I totally sympathize and hope you get this figured out. I don't have low protein, so I don't know much about that. But I do know that low protein is fairly rare. You might want to look into that further.

Amy

[briarrose]

I'm so glad that you filed a complaint. These kinds of stories boil my blood because of the ignorance in doctors.

You might want to contact the chief of the ER and pass this along to him, maybe he can distribute amongst his staff.

Celexa (citalopram hydrobromide) is a selective serotonin reuptake inhibitor similar to Paxil, Zoloft, and Prozac, but with the claim of fewer side effects and less potential for negative drug interactions. Serotonin reuptake inhibitors have been used for many years to treat neurally mediated hypotension and syncope (passing out). The mechanism through which central serotonin levels effect blood pressure and heart rate has not been fully mapped out. The net effect of Celexa appears to be to increase nerve communication and stimulation of the standing vasoconstriction reflex. This limits venous blood pooling and increases orthostatic tolerance. Celexa and the other serotonin reuptake inhibitors are known to increase norepinephrine release to varying degrees.

http://home.att.net/~potsweb/POTS.html

As for the polyuria, I get it at times too and losing the fluid volume does effect my pressure. I normally have these bouts when I'm PMSing.

I'm sorry for your experience. When I have to go to the ER or to a new doctor I'm usually armed with my medical records and some information explaining POTS, this information is already made up in 2 notebooks.

[Roselover]

I'm sorry to hear of your ER expereince too! I've had these symptoms too and they are very scary. But it's so frustrating to face a doctor and know more than he/she does!!

RunnerGirl: You mentioned being checked for pheochromocytoma. How do they rule this out? I am seeing a new Endo this next week and this is actually one of the things I was hoping he would check. It is done with a CAT scan or some other way.

LindaJoy, I hope you are feeling better today.

Roselover

[sunisshining]

I'm sorry linda joy. i hate it when doctors are ignorant. the er visits in my past is where i've found the most concerned doctors, but i would never want to go again just cause i hate going to the doctors even if i am really sick. i don't go until i'm in such bad shape that someone forces me to go. but even still doctors are annoying.

whatever the case. i know it's hard, but don't even LET the way that doctor treated you make u think it's a reflection of you. i always start doubting myself after confronting ignorant doctors. but, just cause they're doctors doesn't mean they are smart or have bedside manner. they're just like normal population as far as that goes. actually, i think they tend to have bigger egos..not all, but, whatevs.

anyhow, i'm praying that you don't have any more episodes.

also, why don't u have your primary doc contact the er so they will know what u have is bonafide (sp?) and they know your records, etc. cause if she wanted u to go there so badly, she needs to help out.

and i'm praying that the way that this doctor cruelly treated you doesn't tear you up too much, or at all.

hugs,

sun

[guvna2004]

I have bad episodes were my HR wil fall and rise and go up and down for about 5 mins, then stop for 10 mins and do it again, i get hot, flushed, confused, scared, anxious ect which makes matters worse. After the fear that u will die and going through the awful trauma u feel fine and say to yourself 'why did i act like that'. Then it happens again and u forget about staying calm and fly of the handles and start thinking back on every past expereince youve had with posts and how this is definatly ur last breath..............And its not inreality.

We will live long and prospure.

[EarthMother]

Nicely done at the ER! You were amazing!! We need to remember that we are not victims ... we are POTS Embassadors, and each time we encounter ignorance we need to do exactly what you did here ..... calm, logical, delivery of the facts....with a long well worded complaint to the powers that be!

Thank you for being our ER Ebassedor last night. And ofcourse my deepest sympathy because I know you did not want the job and really could have used some help and support. Gentle hugs your way.

As for the peeing ..I get these same shakes, bathroom trip, heart irregularities, bathroom trip episodes as well. It's a vicious cycle. What has been a godsend for me is DDAVP. It's listed here on the dinet site. I printed out the info then talked with my doctor who prescribed a small dose. This is stuff they give kids for bedwetting -- it is a mild anti-diuretic. I also can't handle other meds ... but the DDAVP was easy and very helpful.

Goodluck in finding something that works for you.

EM

[LindaJoy]

Hi, everyone,

I just wanted to say I appreciate all of your responses. I'm printing out the thread so that I can sit somewhere with my feet up to read it through, then I'll get back with all of you. I'm having a very hard time right now with my POTS. My doctor in Cleveland thinks I sat too long at my computer Thursday (over 2 hours), and that put me in a POTS hole. She told me I had to start taking the Florineff because I wasn't retaining any fluids, so I started it yesterday. I'll let you know how it goes. My bp is still all over the place.

I did have my adrenal glands checked for a tumor years ago, and they were fine.

Thanks for checking!

Well, need to go relax--I just can't sit for very long right now.

I'll be in touch with you all soon.

LIndaJoy

[Christine]

Hi, everyone,

I had to give in and go to the ER last night, because I was having POTS episodes every 15 minutes.  I would begin with my blood pressure going up, with the feeling of heat going to my face and fingers running up my spine.  Then, my heart would begin pounding rapidly, then go irregular.  After that, I would start shaking uncontrollably and have to pee really bad.  Then, all of a sudden, it's like the vaso-vagul kicks in and my blood pressure drops, the shaking suddenly stops, but I feel quivery and still have to pee.  After I pee--can I use this word, or should I say urinate?--Anyway, after my trip to the bathroom, where I pee like I've drank a gallon of water, it all starts again.  I did this from 9:15 last night until after 11:00, when we called my family doctor, who said she wanted me checked out, I guess to make sure I wasn't getting dehydrated.

Question one:  Does the above sound familiar to anyone?

Now, onto the hospital visit.  I told my gp that I didn't want to go.  She insisted, so I went.  The ER doctor came in and said he had downloaded my hospital file from the last ten years which showed visits to the ER where they diagnosed anxiety and panic disorder.  I told him that I just got back from Cleveland Clinic, and they found that I have POTS.  One, he didn't know what POTS was, nor did he care.  He didn't even ask about it at first.  He asked if I've been anxious since getting back from Cleveland.  I said no.  Then, he asked me what sleep medication I wanted to be sent home on.  I said none.  He asked why.  I said that my Cleveland doctor told me not to take meds like that because they mask my POTS symptoms, and she doesn't want me to mask them.  I told him I don't have just anxiety, I have POTS.  He burst out with, "Then why do you take Zoloft?"  I told him that Dr. Fouad said that Zoloft is good for the vaso-vagul response to POTS, that it's used for more than depression.  He wouldn't listen to anything I had to say.  He just kept saying that I have a history of anxiety, according to my records, and that's what he's going with.  After he left, the nurse came in, and I told her exactly what I thought of the doctor, then I told her all about POTS.  She listened and became more helpful than the doctor.  Then, my husband asked if the doctor was going to give my diagnosis as anxiety.  She said no, he was going to write depression.  We went off.  Then the doctor came back in.  We said, Do you even know what POTS is?  He hee-hawed around, then said, "Uh, it's some kind of disease."  Anyway, my system calmed down after awhile, surprisingly, then we went home. 

This morning, I called the hospital and registered a formal complaint against the doctor.  I told the woman I spoke with all about POTS, and she looked it up on the internet, downloaded some information, and is going to send my complaint and the POTS information to the hospital's head doctor, with a suggestion that the doctors get some training on POTS.  I also asked if my records with the hospital could be somehow changed or gotten rid of, as I think my past wrong diagnosis will affect my future care.  She said she'd look into it and try to help as much as possible.  I really hope this helps.

One other question.  I had a tall glass of milk yesterday with whey protein--my blood results showed that my protein is low.  I know that dairy really pulls blood away from the heart and stuff to get digestion going, so do you all think that the dairy could have caused my POTS problems last night? 

Do any of you have low protein with POTS?

Thanks.  Any help will be greatly appreciated.

LindaJOy

<{POST_SNAPBACK}>

[Christine]

Hi Linda,

I am so sorry to hear about your ER visit. It is amazing how ignorant some doctors can be. I too have periods in which it feels as if I can't empty my bladder. I don't have any advice just that you are not alone.

Take Care,

Christine

[Sunfish]

Linda -

I just want to give you major props for following up with your horrible treatment in the ER. I have a list of mistreatments that I'm going to follow-up on but have yet to actually do so. In the midst of a horrible situation I'm also glad that at least your calls afterward were well-received. I too have had bad ER experiences & this past year my doc has had to send me and always apologizes pre-emptively, knowing that it's a crapshoot every time. I have figured out though now to go to the hospital where my doc has priveleges & insist that they call her & haven't had a problem there...not always help, but nothing unexcusable. But I live in a large area with lots of options, too, so I realize not everyone has that flexibility. There are still records out there that say I'm nuts that I would love to have "fixed" but it's a project I don't currently have the reserve to embark on.

Great job in advocating for yourself & for all of us. We all need to follow your lead. Many many thanks!

:-)melissa

[LindaJoy]

Hi, everyone,

Again, thank you for your responses. I must be getting stronger as I age because, ten years ago, when the POTS first hit me hard, I would have never, ever dreamed of doing what I did in the ER. I took whatever the docs said, which was usually, "Anxiety, panic disorder, go home and call your shrink." Now, I'm just so tired of it all. I think, too, after reading all of your stories here, and what all of you have been through, too, with trying to get help and being told it's all in your head, that made me even madder and more determined to stand up for what we all have.

I'll let you all know if anything is done about my telephone complaint. So far, I haven't heard a word. It will probably be filed under "Not important enough to reply" and that will be it. I'll let you know.

Again, thanks for your support. I'm glad to have been strong enough, at that time, to stand up for all of us a little bit.

Linda

[DancingLight]

sorry to be so late in responding to you and i don't even think i have been able to welcome you...so welcome!

anyway, i'm a bit behind on 'getting to know you' so forgive me if i'm 'missing pieces'...

this link was posted under another thread, but i watned to make sure you saw it b/c when i read your question about milk allergies...well, i thought you might want to read this...

as for your symptom description...yes, you are not alone. those symptoms are me to a tee. and i know they are horrible and miserable! this is how i spent the first 6 weeks post surgery. i felt like i was going to die (i know, not going to, but it sure felt like it!).

i am also follwoing the strict milk-free diet mentioned in this article. for some people (me) this means even avoiding milk in your medications! not an easy task!

anyway, hope this helps...

http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm

emily

[LindaJoy]

Thanks, Dancing Light, for the link. I wasn't sure if it was the milk and whey powder that set me off the last time, but today, I had sour cream--quite a bit of it--and some cheese, and I had some problems tonight, along the same lines as the night I had to go to the ER. This time, I figured, because of everyone's help here, that it was just the dairy intolerance and didn't worry. This, too, will pass in a few hours, hopefully!! I am feeling better--had the dairy around 3:30 this afternoon and am starting to feel a bit better now. Guess I will know to stay clear away from dairy some day, huh!

Thanks, again, everyone.

Linda