Hospital Visits

[Ravenau1]

Hi everyone!

I'm a bit of a lurker but I've finally summoned up the courage to ask some more questions lol.

I had my first fainting spell in September last year and I was taken to hospital by my Husband as I gave myself a pretty good crack on the head. I was diagnosed with POTS several months later by my Cardiologist. He promptly told me that I didn't need to see him again and that my GP would take care of me from then on. I take atenolol, as well as medication for my hypothyroidism and sleep problems.

BUT I never really know what I should do! I faint at least a couple of times a week, and while I've never broken anything (bone-wise... I HAVE busted some furniture!), I regularly smack my head on something on the way down, and I am always covered in bumps, bruises, scratches, cuts and the occasional black eye.

My question is, should I go to hospital if I faint? Is that excessive? I get worried sometimes that I will damage something and not know about it!

I am curious as to what others do?

Thanks

Elana

[potsgirl]

Hi Elana,

I'm also a fainter with POTS/OI. I don't go to the hospital unless I faint and hit my head on something or feel that I might have caused myself damage. You really should be safe and go if you hit your head on anything when you go down. If you pass out and come to within a minute or two, and don't hit anything that might cause your brain damage, you're probably safe. But only you know your body the best, and if something feels different or out of the ordinary, it's obviously better to err on the side of caution.

I have a bracelet I wear with a black velcro strap that I love...It has a silver plate engraved with my name, contact name and phone number, doctor's name and phone, and my list of problems in case I faint while I'm out on my own. If you're interested, I can get you the info on how to get one. They're inexpensive but a comfort.

Cheers,

Jana

[tinkerbella]

WOW, I can' believe that your care is just passed off like that. I really feel mad at your doc and sad for you. I see my cardio more than my PC, AS HE STEERS MY SHIP so to speak since my dx. IF I call the office and tell them I fainted or I'm having near faints in the nights they have told me to call 911.

My problem is how do you call when wake so confused covered with food? I faint sitting, near faint walking all at night. the first thing I would call is a new doctor as it sounds like you need a cardio who deal with Pots as not all do. You may need a 24 hour bp cuff to see what you pressure runs and when these events take place, THEN YOU MAY NEED extra meds to be given at like florinef or midodrine to keep your pressure up.

THE HARDEST PART OF POTS is being an advocate for yourself when we are so tired, BUT WHEN WE ARE NOT GETTING THE RIGHT CARE IT'S TIME TO MOvE ON....

I'LL SAY A PRAYER that you find better care as we all deserve it.... You should have a neuro spec in pots, cardio spec in pots, and most PC ARE NOW LEARNING IF YOU ARE THEIR LONG TIME PT. SENDING YOU (((((((HUGS)))))))) and I hope you live close enough to get the good care we all deserve.

Blessings and LOVE,

Bellamia~

[pat57]

I would say that your treatment is not effective and you need to try other things. The down side of letting the Dr.s know how of of control it is , is that you may lose your drivers license.

You need to be looked at again, POTS is a syndrome, the Drs. need to tease out exactly what your mechanisms are .

good luck

[Mrs. Burschman]

I agree with Pat. It sure seems like your symptoms could be better controlled. And that doc sounds like a candidate for the Hall of Shame!

Amy

[tinkerbella]

Elana,

THE first time I blacked out after I had been dx with POTS the doctors didn't count it as I was on the toilet and never hit the floor. I had everything go black and grabbed my had and held it down till I came to and I could see again, also I was in the hospital. I was so scared, I was so flushed so the nurses didn't think anything was wrong with me. That alone was scarey and then I WAS TOLD THE NEXT TIME I WOULD NOT BE ABLE TO DRIVE FOR 6 MONTHS. Right now I don't drive and haven't since the end of Dec. 08.

I wish you the best of luck...ALWAYS IF YOU HIT YOUR HEAD, CHECK IT OUT! TOO many people die from head injuries who get up talk and walk away. Like the movie actress this past year...

bellamia~

[Ravenau1]

Thanks everyone for replying!

Jana, I have a medic alert bracelet with my symptoms etc and a contact number for more info that I never take off. They're wonderful aren't they? I wouldn't feel safe stepping out of the front door without it. My work really wanted me to have one before I returned in February this year.

BellaMia, pat57 and Mrs Burschman. I cannot find anyone in my state that specialises in POTS, I believe there are a couple of Drs on the other side of the country, but frankly they might as well be on the moon as far as accessibility for me goes. The Cardiologist I saw had never seen a case of it before, though he had read about it.

I was prescribed propanolol at first but it really didn't agree with me so we switched to the atenolol. It's not great, it gives me migranes and messes with my sleep but I generally feel better when I'm taking it, even though it doesn't keep my heart rate down like it used to. My resting heartrate when I'm sitting down is still about 120 beats per min, and when I stand it varies wildly.

The Cardio told me that there's nothing else I can really do without having surgery - he talked about a procedure to 'deaden' part of my heart to slow it right down then put in a pacemaker to speed it up to normal, I can't remember all the technical terms but that's what I understood about the procedure. My heart itself is quite healthy according to all the heart tests I had so making my heart reliant on a pacemaker seemed like a pretty drastic option and I said no. When I first started having problems the thought was that my heart was showing damage due to the years of chemo and radiation I had in my early 20's, and after the tests showed a healthy heart the Cardio was a bit lost I think.

Sometimes he would say that I 'must' have low blood pressure during my faints, but as I never fainted on the tilt table or while I was hooked up to the holter monitor he can't be sure so I am not on any kind of meds for that. When I'm feeling 'fine' my blood pressure is a little low but within normal limits. But then at other times I was told that I faint because when my heart is beating so fast it doesn't do a full pump, therefore doesn't move enough blood around my body. Not enough bloody around my body = not enough blood and oxygen to my brain and therefore a faint. I guess both could be correct, or neither lol.

I would love to see a Dr that might be able to make me feel better! I feel so lost most of the time and I had to do all the research on this disorder myself as the Cardio really didn't tell me much at all. And to be honest, at first I was relieved to have this diagnosis and not something more 'serious'! I guess at that time I really didn't yet understand the impact it would have on my life and how much it would DRASTICALLY reduce the quality of my life. Now, looking back, I wish it had been something, even if it was heart damage, if it was something they could fix! I've dealt with serious illness before, I spent years in and out of hospital with Hodgkins Disease but with that there was a 'finish line' (one way or the other). To me this is so different, and harder to deal with. I don't know when it might get better, or even if it might get better. Though I'm sure I'm not telling any of you something you don't already know and deal with yourselves!

Before I started getting sick and feeling really bad I worked 25-30 hours per week, now I am down to 4 hours per week and sometimes I can't even manage that. It sure puts a strain on the finances. I don't drive at all now, I haven't since about a week after my first faint. I have fainted a couple of times while sitting down so I don't think it's safe for me to be driving.

Thanks again

[worththewords]

The Cardio told me that there's nothing else I can really do without having surgery - he talked about a procedure to 'deaden' part of my heart to slow it right down then put in a pacemaker to speed it up to normal, I can't remember all the technical terms but that's what I understood about the procedure. My heart itself is quite healthy according to all the heart tests I had so making my heart reliant on a pacemaker seemed like a pretty drastic option and I said no. When I first started having problems the thought was that my heart was showing damage due to the years of chemo and radiation I had in my early 20's, and after the tests showed a healthy heart the Cardio was a bit lost I think.

I think it's really important to find another doctor. I'm not sure where you live but check DINET's physicians list to see if anyone is nearby. Worst case scenario, open the phone book and start calling around to see if any doctors (cardio, EP cardio, neuro) are familiar with POTS. I would NOT have an ablation without getting another opinion and exhausting all other options. I failed my tilt table test but the EP cardio did not know how to interpret it correctly. I ended up having an ablation, which was supposed to "cure" my problem and it made me SO much worse. Later I was finally diagnosed with POTS and the ablation is one of my biggest regrets.

[potsgirl]

I'm sorry, I didn't realize that you fainted while you were sitting down. You definitely don't want to drive, then. What do they think causes your fainting when seated? I only faint when I'm standing up too suddenly or on my feet too long. My BP will fall to around 65/45-50 and down I go. I'm usually only out for a minute or so. Do you have sudden falls? Sometimes my legs will give out and I just fall on my rear - it's just a constant source of amusement.

I really hope that you find a good doctor sometime soon so you can get on the right meds/regimen for you, and start feeling better. It doesn't sound like the meds you're taking are doing enough to prevent these dangerous fainting spells. Has your doctor mentioned Florinef or Midodrine to raise your BP? What are your regular BP and HR measurements?

Cheers,

Jana

[goldicedance]

Hi.....

I think that your doctor is talking about doing a sinus node ablation and the pacer because,chances are, you will develop bradycardia.

If, in fact you have POTS, a sinus node ablation is not a good idea. Chances are if you go that route you may need an AV node ablation as a result of junctional tachycardia. You would then be pacer dependent.

That is the route I went down before I was diagnosed with POTS over a decade ago.

If you decide to go the pacer route,I would strongly suggest that you be sure they put dual leads in (just in case) as well as explore a pacer made by Biotronix.

Let us know how you are doing. Don't be a lurker! Welcome aboard.

ois

[pat57]

It is my understanding that Dr.s routinely do "professional consults", which just means he should call another Dr. for informed advise on your case.

[yogini]

Yikes - fainting so much is not good. Is there an electrophysiologist cardio near you? I'd try to find any doc that is willing to prescribe various POTS meds for you until you find one that helps.

Maybe you can find other people in your area on DINET who know of drs. And there are other people who faint - maybe you can find out what treatments work for them. How is your BP? Usually people faint b/c their blood pressure is too low. You could try stuff to boost your blood pressure - lots of salt and water and compression hose.

[Ravenau1]

Thanks everyone, you've given me alot of food for thought! I have made an appointment to see my GP and am going to ask to be referred to another specialist.

[Sunfish]

there was a similar question awhile back. the specific question posed then was "when to head to the ER?" but many/ most of the issues at hand are the same, as are the main points in my reply/ discussion. here's my reply as copied & pasted from that post:

as many others have said in various ways, ERs are truly not designed for those with POTS or most other day-to-days issues related to any of the many types of autonomic dysfunction. in my pre-diagnosis & early diagnosis years i too had my fair share of ER visits, many against my will when i would full-out faint (i was 17 & away a college so legally couldn't refuse even when i came to), etc. i know what it's like to deal with docs who have no clue what's going on & can empathize with all who have been belittled. but that said it has been many many years since i've gone to an ER for something related to dizziness, fainting, feeling cruddy, etc. and in all reality ERs are not intended to deal with any type of chronic illness, so it's not only POTS, NCS, syncope, dizziness, etc that they're ill-equiped for. without wanting to offend anyone, nor keep anyone from an ER trip if/ when it's really necessary, ERs are not meant for management of day-to-day symptoms...no matter how frustrating they might be, no matter how much you might need/ want an answer, etc. they are meant for life &/or limb threatening situations & other like emergencies wherein, in theory, life or limb would be threatened if someone didn't go.

now....of course i realize that many people have the fear that their life is truly in danger & go for that very reason, but one good guideline (most of the time) is if you've been dealing with a certain symptom repeatedly, there is very little chance that all of a sudden it will be dangerous when it never has been before. this is even more true if it's something that has been evaluated &/or discussed with a doctor. obviously there are exceptions to this rule, as there are to most rules, but i'm sure you get my point.

i know that it can feel HORRIBLE to have any measure of the crazy symptoms that our crazy heart rates, blood pressures, nausea & vomiting, palpitations, etc. but more times than not they are NOT life-threatening. and at the risk of sounding glib, however much they might make you think that you feel like you're dying, i can assure you that they don't come close to really making you feel like that at all. if you were really on the cusp of dying you would know. i promise. i've been there for real & it makes all the other stuff pale in comparison. i know it's hard to think that you could feel worse but you can. i will spare you the blow-by-blow description of the "almost dying" feeling but trust me that, if you're really there, you will KNOW - as will any/everyone around you - that there is no choice but to call 911 asap...no passing go, no collecting $200, no time to even grab your essentials.

drama aside, there are of course times where the ER can be a necessity, and these times can vary based on one's individual situation. for example, a short-term fever of 102 with shakes & chills, as miserable as it might be, doesn't necessitate an ER trip for most people, but if someone has just had surgery & the surgical site is looking bad or if someone has a central line or someone is a transplant patient or other specific things then the same scenario is almost always an autonomic ticket to the ER. that said, there are exceptions even to that, as i've had many a fever up to 104 without going to the ER. the details of my scenario with regard to that aren't important for this discussion; i'm just making the point that there are very few, if any, absolutes when it comes to "when to go to the ER". i'm lucky in that i have a medical care team that allows me to stay home when 99.9% of the population would be sent to the ER...for me a huge blessing b/c with all i've had going on at times many doctors would have had me in the ER (as well as admitted) for weeks & months on end (more so than i already was that is). on the other hand my doctors, family, & i knew that we were taking some risks in some of our decisions not to go that i would certainly never impose on anyone else; i/we decided that some degree of gambling with my health and even my life was a fair trade for the improved quality-of-life that came with my being at home rather than in the hospital more often than i already was. but really this isn't about me....i'm just giving examples.

other than times that i have been ill enough to warrant direct admission to critical care or ICU there have been several other scenarios in recent years when i begrudgingly went to the ER, received necessary treatment, & given the particular circumstances don't regret having gone & would do so again (within the specific situation).

two general categories that could prompt an ER trip in particular circumstances, though, might be the following:

1. IV fluids: while i have central IV lines now & am dependent on IV hydration/ nutrition day in & day out, for the years that i had serious GI issues but didn't yet have IVs of my own at home i generally had it set up via my treatment team to receive IV saline (& at times electrolytes) on an outpatient basis without going to the ER; that said there was one time right after moving hundreds of miles that i didn't have my new set-up in place & hadn't kept ANYTHING down in days. i tried to use an urgent care place rather than an ER but per their blood work my electrolytes were dangerously wacked out & couldn't be corrected by them in the hour they were still open so they all but forced me to the ER that was across the way; i'm stubborn but not stupid & i knew it was something i needed to do. so while i highly recommend anyone who can to set up a way to get IV fluids on an outpatient basis other than via the ER, there may be occasional times that it can't be avoided.

2. potential head injury: while the scenario that elicits my being concerned is MUCH more extreme now than it was years ago, there would still be certain signs & symptoms that i would say warrant ruling out a head injury after a fall/ faint that includes a head hit. many years ago i was convinced over & over again that any time i hit my head i "might have a concussion...you never know" despite the fact that knew darn well i was fine. over the years i learned that there was no need to be continuously scanned "just in case" & my doctors agreed with me, but are there scenarios that still might make getting checked out after a fall the logical (& smart) choice? of course. if there's bleeding involved (beyond a scratched knee rolleyes.gif , that is), cognitive disturbance after a hard knock on the head (that's different than one's "normal" post-syncope state of confusion), a fall that messed with one's neck/ spine (i.e. going head-first down a flight of stairs) wherein there's subsequent loss of feeling, etc. you get the idea.

i hope i didn't offend anyone with some of my rather straightforward comments as that was definitely not my intent. ultimately i was just trying to stress that, regardless of how horrible it can feel to be on the side of the patient, ERs aren't the place to the answers that many might be seeking. E.M.'s post articulated this, as well as the preferred & more effective alternative, very well. that said, i would never want to be the one who keeps someone who really needs to be heading to an ER from making the trip b/c i've been the person who, as stubborn as i am, has held off going once or twice to the point that my hesitation almost killed me (though, if i'm honest, i knew long before that i should have been on my way). i suppose the old "better be safe than sorry" does technically hold true, but at the same time i think it needs to be handled with care as i think it may be used at times as an easy way out when in reality the real need is for better day-to-day management, understanding, & tolerance of symptoms that an ER simply won't & can't be of any help for. b/c while it's by far not the only thing wrong with our health-care system, the mis- &/or over-use of ERs is one component of things....

but i'll get down off of my soapbox & shut up now. promise.

melissa

the entire post can be found via the following link:

"What Warrants an ER Visit?"/ Nov 2008

[Ravenau1]

Thankyou Sunfish. I did do a search on the topic before I posted but must have missed that, probably because I was looking for 'Emergency' and 'Hospital' in the thread title rather than 'ER'. My apologies

My husbands cousin recently passed away due to an untreated minor head injury, and as I regularly hit my head when I faint my husband has been very concerned that I don't seek medical attention afterward. I have actually fractured my skull twice in my 20's (not POTS related, more stupidity related lol) with no real ill effects other than monsters of headaches, I know that the force has to be great to do real damage. My initial post was actually prompted by a faint I had where I hit my head and split open my scalp and didn't feel that I needed to see a Dr. My husband seems to feel the need to want to rush me off to hospital every time so I was curious as to how often others went.

[Elfie]

I have only been to the E.R. on a few occasions. One was when I was 10 and broke my arm and most of the others were when I was younger than about seven. My elbows used to dislocate anytime someone pulled on them and I would have to go to the E.R. to have them put back in because my dad could not stand to cause me the pain that manipulating them back into place caused. The only time in my adult life was about two years prior to my diagnosis, most likely due to POTs symptoms. I was having severe pain, was losing consciousness, and then began to projectile vomit from the pain. A ex-boyfriend of mine insisted on taking me in. I was given I.V. fluids and inter-venous motrin and an anti-nausea medication. I.V.'s are magical and I had the best sleep I had in years. I have never been back and I probably will never go back because I no longer have a ride because none of my friends that live in the area have vehicles and if it was bad enough for me to take an ambulance ride, I probably would not be able to manage to call 911.

[erik]

Head injuries are so fickle! It's nothing to mess around with, but I understand the frustration when sometimes things recover just fine and one tends to feel like they over-reacted. But even minor appearing injuries can go south rapidly... so please err on the side of safety as best you can.

Also, I am curious if you or a doc have investigated the remote possibility of "hypopituitarism"... these can apparently vary greatly in extent as well as which hormones are effected, which means their symptoms can be elusive. One particular style is like a mild-addisions, which happens to result in symptoms virtually identical to POTS. I keep this in the back of my mind, as my POTS symptoms may have begun after one of my head injuries (fainting + various cognitive things). The pituitary & hypothalmus are a bit fragile (physically & toxin-wise) and in a way it would be "nice" to have a hypopituitarism identified because often they can be directly treated with steroid replacement (as opposed to the symptomatic treatment of POTS).

Just a thought.

[Ravenau1]

I would like to thank everyone for their advice. I have an appointment the day after tomorrow with an Cardiac Electrophysiology Dr who says that one of his 'special interests' is Syncope. I am quite excited to be seeing him and hopefully he can help me.

[ethansmom]

I am not a fainter, but I if I did pass out I would definitely go to the hospital the first time (because it's NOT normal for me). However, I tend to avoid the medical community like the plague, except when necessary, so at this point I have to say I would only visit the ER if I had an emergency injury or a heart arrythmia, as I do occasionally get SVT.

[Brye]

Avoiding the health care system is understandable. I've had numerous visits that I've felt were a complete waste of my time and money. When it came to requesting my disability however I at least had well documented injuries and symptoms. I also had numerous doctors not knowing how to even treat POTS. I think that helped me with my claim getting it approved on the 1st try.

Brye

[erik]

This is a little off topic, since you're wondering more about "when is it urgent", but I had one or two urgent care/ER visits that were total wastes of time, at the time. That is, until years later when I can now piece them into my puzzle (for example appearing "dehydrated" despite normal electrolytes & urinating adequately). I now wish I had some of my older "useless" stuff. So it's a small point, but sometimes a useless visit can have some nominal use later in documenting patterns (like the elusive ones). If you've got a solid diagnosis and non-progressive disease, I guess that's of limited use... but you never know.

[RIfainthearted]

I had the same symptoms (resting HR between 100-150) which rose to 170+ upon standing. After many tests, it was determined that my heart was healthy. After many years with no answers (I was taking Atenolol), I saw a cardio at Mass General. After a couple of tests, he diagnosed POTS and switched me to Midodrine and Nadolol. Recently, my internist added Florinef. The key for me is staying hydrated. After one faint, a neighbor called 911 and the responders decided that my skin was gray, BP was too low and I was too out of it. After four bags of fluid in the emergency room, I was much better. Definatly time to get a new doctor...