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First syncope


morgan617
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:) Hi, haven't been on much, but here's an update. At my husband's doctor yesterday, I felt awful. I have never been well and in fact have just gotten worse, since my 911 a couple weeks ago.

We were waiting for the doctor and I asked his nurse to check my bp. I never do that but was feeling pretty crummy. I have been having so many arrythmias lately, I thought it would be low. It was 180/100.

My heart took off and I told Hubs I needed to lie down so crawled on the exam bed. But I was embarrassed, so I got down before the doctor came in. While they were talking I just interrupted and told Hubs I needed to go home.

He helped me up (no 911's for me! :) ) and I have to pee of course, so we were out in the lobby and bam, down like a sack of potatoes. Cracked my head so hard it knocked me out. I then proceeded to have a seizure so I have been told.

My bp was 210/130. Hubs doc said call 911 and I yelled NO. Hubs tried to pick me up and I couldn't help him, so 911. %&^$ They got there and I realized I couldn't talk or move. I could hear them and understand them, but couldn't focus on anything, move, or talk. I said one thing. I hate you, to the para medic. Nice...

They were talking and said I was having seizure activity and I was not in very good shape. It was awful, because I could understand, I just couldn't do anything. I wasn't even smart enough to be afraid. So they picked me up and one of them said , what a noodle, and the other one said, geez I guess. It's a good thing I have lost so much weight.

So we go to ER, because I can't say no anymore. My pupils are dilated all the way and won't constrict and I can't move and my head is killing me. So they did labs and cat scan. Cat was okay, but will be re read today. White count 17,000, so infection somewhere and potassium 2.6 = critical value. Like cardiac arrest level. No wonder I am so weak and my heart so irritable. Droopy right face. Things slowly started to return, like speech, then movement, more on left than right. They gave me 20 meq of K+ and sent me home.

So I have now had my first syncope, with a concussion and no one knows why my K+ is so low and white count so high.

Just an fyi. I had 3 tests done on my adrenals after I stopped posting. All three were abnormal. Except one was .3 in normal, so the "wonderful" endo says nothing is wrong. The two abnormal tests are "equivocal" and the one .3 in normal "proves" there is nothing wrong. I expected him to say nyah or something.

Later, morgan

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Bless your heart! At least it happened at the doctors office so there was no way anyone could say you were faking! I hope you rest this weekend and please keep us posted. That had to be terrifying for you and everyone around you. Any idea why your potassium so low (Florinef?).

Carmen

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maudry -

so sorry to hear that you had to join the ranks of those of us who pass out. hopefully it will be a one time occurance for you though (which is feasible since you had measured bloodwork that was out of whack).

as you know, there are many here who can understand. i know that doesn't fix anything, but we can "get it". many have joked with me that i must have a really hard head for it to have split wide open with the number of times i've cracked it on the ground. i often have "seizure like activity" after passing out but it isn't actually a seizure but rather b/c of lack of blood to the brain. from what i've been told though it looks just the same. never actually seen it myself. wonder why? ;)

i'm SO glad that you did end up getting taken to the ER as you're right about those potassium levels being dangerously low. i've had them there too (in the low to mid 2s...either 2.4 or 2.5....can't remember.) fyi, that could have been why you had the seizure-like activity. obviously no way to know for sure, but a possibility. re: why the level was as low as it was, are you on florinef? or eating a lot of licorice? or eating habits in general not as good lately (i.e. more GI problems)? just a few thoughts....it's definitely something to follow-up on. perhaps you can have your primary care doc order bloodwork for you in a week or so & then every 2 weeks or so for a bit to make sure the numbers don't creep down again. and in the meantime, bananas & raisins & other K+ foods galore...yum yum:-)

re: the white cell count, in all likelihood you probably have some bug in you that will take care of itself with time, and that played a big role in your being as sick as you were yesterday in the first place. i know for me when i'm coming down with something i start to pass out, etc. often before i even feel "sick" (i.e. a cold or flu). again, sounds like an appt with the primary is a good idea in the next week if for nothing else than to check in....

re: the endo tests, i'm sorry you're not getting any help from the endo but am not sure i understand what is meant by ".3 in normal" or how a test can be considered normal & abnormal together. i guess i wouldn't be satisfied with the 2 are abnormal but 1 is normal so no problems either, but without knowing the tests don't know what this does/doesn't mean b/c it can be the case in some situations. for instance my younger bro had a test showing an enlarged heart earlier this summer but the follow-up tests were/are all normal so the conclusion is that everything is fine. that's the short version, but just an example of how sometimes normal tests can, in a way, supercede abnormal ones. i'm not saying that this is the case with your endo tests or that you shouldn't pursue it further - i definitely would if i were in your shoes.

hang in there.

:-)melissa

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Thanks all. First, I have never taken any meds for pots except betas. No florinef or anything remotely like it. I have weaned my valium down to 4-5 mgs a day, that's the lowest I can go without getting meneires problems. I'm okay with that. Afunny thing, at the hospital I told them I needed 1 mg of it, and we could hear them outside my room trying to figure out how to cut up a 5 mg round tablet into 5 equal pieces and someone said, I've never heard of anyone taking only 1mg of valium. So they brought in this teeny piece they had broken off. It was sort of funny. I have 2 mg tabs so not quite the hassle for me.

I have an appt with my primary on Wed. I've had it for 10 weeks. I am supposed to get my blood drawn on Monday. But I can tell it's not much better. I realize now what all this twitching, cramping and weakness is. It didn't occur to me as the only time it's ever been this low was when they gave me diuretics for meneires. Of course we now know that wasn't a good thing, which is why I now take valium for it. Diuretics do not work for us.

Sunfish, as far as the tests, the first cortisol stim test was done in an outpatient infusion area where they do these all the time, so you only have to get stuck once. There was no stimulation at all, but the baseline was okay, which often occurs in adrenal insufficiency. The second test was a 24 hour urine cortisol which was below normal. The third test was a second cortisol stim. The doctor made me go to the hospital to get the med and fight with them because they don't give meds to people not in the hospital. I had to walk to his office, then the lab, then had to go back to the hospital because he didn't order the dilutent for the ACTH, walk back to his office, have him stick me again and dig around for 5 minutes trying to find a vein. I asked him if I could lie down and he said no. Then I had to walk to the lab again and get stuck. The friend that took me was bored so we walked to a pharmacy and she said her knee hurt, so she sat down and had me hand her cards to look at. Then I got stuck a 4th time. I really do not like being stuck and have lousy veins. They made me lie down and drink apple juice. This is the test that was .3 in the normal range. Imagine the stress of that on top of 85 degree weather.

My point is, I think he was determined to make sure I had a normal test so he would be right and I would be wrong. I think the stress of going through the test burned up any little bit of cortisol I had and therefore looked barely normal. Ergo, tests that were well within the abnormal range were equivocal and test done under extreme stress was the gold standard.

As far as fainting after so many years steph, the reality is, I don't think my pump is very effective anymore and doesn't tolerate these things like it used too. My bp is always high and has been for many years now, it is not really labile except to just go higher and it is taking it's toll. I am asking my primary on Wed for one last echo to see how well it is pumping, and then I'm pretty much done with tests. If I was your age, in my 20's I would probably be more aggressive again, but at this point, I just really do not have the energy. I will also tell him that if he thinks the endo was right, they are both very wrong.

The way I feel anymore, I'm pretty sure this is not the end of my episodes and each one is worse than the one before it. I am tired of defending myself to ems, doctors, and anyone who believes this is not real. You're right steph, I have taken quite a downward turn in terms of health. I can't be funny anymore, because there isn't anything funny about this anymore. This is so hard on my family. My hubs was crying his eyes out in the er and says he is so sad that I'm so much sicker. It breaks my heart. My son checked on me about a 1000 times last night, I pretended to be asleep. This is not funny and it doesn't just affect the one that's sick. Sorry this is not the way I intended this to go. Don't mean to bring anyone down. This is why I haven't been posting. ;)

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I am so sorry you had such a horrible time! I am glad it happened at a doctor's office, though. At least medical professionals get a chance to "watch us in action" when that happens. So sorry you had to go through it, though.

I do know that feeling very well- being able to hear and understand what's going on, but everything going black and not being able to respond. It is very scary, for sure.

The first time it happened to me I was 13 years old and had been perfectly healthy all my life. Got up in history class to ask for a bathroom/hall pass (was feeling woozy, which was unusual for me) and totally blacked out in the back of the classroom. I remember trying to walk for the door (to get out in the hall for fresh air) but didn't make it- so I just crashed into a bunch of desks and passed out right by the cabinets. I was unconscious for about 1/2 hour... the teacher was freaking out trying to talk to me (I could hear him, but couldn't see him or say anything) and students were all chaotic around me. I would go in and out- sometimes being aware of what was happening and sometimes being out completely. I remember being dragged, by my armpits- my legs dragging on the floor, all the way down to the nurses office. I didn't 'come back to life' until the nurse put my feet up. All the other kids and the teacher kept trying to STAND ME UP! In the classroom they were pulling me upright and wouldn't let me lay down, so that's why I stayed unconscious for so long... oh it was miserable.

No one forgets their first time.. that's for sure. Jeesh!

At least you have a crowd here that understands what you're going through! Are you on florinef, by any chance? Has your K level ever been low before?

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Morgan, Please don't stop posting. You need to be able to talk about this to people who understand and relate to what you are experiencing. We are all here for you and want to be able to help, especially when things are going as badly as they are right now. You've helped so much around here, you shouldn't feel bad when you need some support as well. That's why we are all here, isn't it?

Were you put on any oral K+ or antibiotics? Any follow ups being planned? Are they going to contact you after reviewing you CT scan again? Did they do a urinalysis to rule out bladder infection? Anything?? Hopefully your primary will investigate this further on Wednesday. Please take good care of yourself. xo Laura

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Hi Morgan,

Sorry to hear about your awful experience with your first syncope. It must have been terrible to feel so sick....struggling to stay "normal looking" for your husband's sake...the whole time feeling on the verge of passing out. I really have to say that i admire your spirit to be there with your husband even when you felt so terrible.

It's awful that doctors have not been able to help you so far. Maybe since they were able to pinpoint a few abnormal things in the ER, someone can put it all together. I hope your doctor can help you on Wednesday to do some detective work.

Also, i want to say on a lighter note that i love your new icon. I'm a huge fan of Westies (had one as a kid). As soon as I'm able to walk one around the neighborhood, we're going to get another one. :)

Kristen

PS-- have you had your kidney function checked? Hypokalemia without any drug-cause sounds like it might be kidney related.

Edited by JaneEyre9
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Guest Julia59

Yes Morgan----don't stop posting. Sometimes venting these things out of your system can be helpful. I understand your discouragement with all that is going on for you. How dreadful those Docs can be, and all the rest of the dog and pony shows in those ERs. No wonder you don't want to call 911 anymore.

Wouldn't it be nice to actually have a 911 call where someone actually helped you and didn't think we were some kind of nut. I don't know how they would come to the conclusion any of us were nuts---especially you---as your BP was so bad---how could they not understand that that alone is an "issue" of importance.

It's a shame we have to actually fear 911 calls, and going to ERs. Callling 911 or going to the ER is supposed to help us lessen our fears, and actually help us feel better, but unfortunately it doesn't always work that way.

I wish you were posting with better news, and that you didn't have to go through this slump any longer. You deserve a good spell-----and it should stay that way.

It sounds like you might have more going on other then POTS, and you should have a really good work up. Your potassium levels were very low-----I hope you can have better control of that as that can be dangerous. I think my diet is pretty high in potassium--I eat a lot of tomato product, and orange juice----and I throw a banana in there here and there.

Maybe some of those ER folks are a little low on potassium---maybe if we throw a banana their way they will get a clue as to why they are working in an "ER". If you ask me, some of them act like a bunch of monkeys----but I think some of the monkeys i've come accross have a little more sense.

I pray that things turn for the better for you soon---enough is enough---- :)

Take care-----& hugs to you,

Julie :0)

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Miss Eyre, thank you, I love my baby girl too, also steph I think you commented on her. I'm going to post a better picture though.

As far as kidney function, about 2 years ago, I saw a nephrologist and he said he could tell what was wrong, but he refused to put it on paper. He said his peers would think he was crazy. Gee, I wonder what that feels like....

Anyway, he said my body thinks it's very dry even when it isn't (no one here understands the concept of our volume problems) He said I was way too complicated for him or any one in this area for a few thousand miles any direction. There fore he was not going to embarrass himself by writing something about me other doctors would question. So, who knows.

You can see, I have gone many routes here with no success. At least a couple of doctors admit it's not in my head, but that doesn't help when they will not defend or be on my side, if it might embarrass them. I love my body.....getoveryourselfmorgan

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Morgan,

I will keep you in my thoughts and prayers and send lots of healthy energy and healing hugs your way. It's awful what you're going through. :) Are you sure that you weren't having a stroke or TIA (since you had a droopy face) and not a seizure? I'm just curious if they've definitely determined these are seizures or if they've definitely ruled out strokes. I remember your last ER visit you had a very similar episode.

Hopefully increasing your potassium will get everything back in order? Are you on a blood pressure medication? Sometimes they deplete postassium, so I was wondering if that might be the cause.

Anyway, I just want you to know that my thoughts and good wishes are with you. :unsure:

Gena

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Morgan,

I'm wiped out and not thinking too clearly but I just had to reply before I head to bed.

I too hope you will continue to post....in good times or in bad times. We want to support you through this and you need us just as much as we need you.

I too have had the experience of bp spiking high, passing out and then not being able to respond yet understanding everything going on around me. It is frightening and frustrating!! I also have drops in potassium that nobody has been able to figure out. Yet, I'm also very sensitive to the potassium pills so when my body is low on it I have to be very careful about how I get my levels back up.

I read in a medical article about a year ago that our bodies use more potassium during times of stress (by stress I don't necessarily mean "mental stress" it could be mental or physical). I notice my levels tend to drop a week before my cycle starts, anytime I'm fighting a cold/flu, if my activity level suddenly increases. What's worked for me is I added drinking a glass of Juicy Juice every morning (it has lots of potassium, no preservative, not high in acid like OJ is). Then, because I am allergic to bananas I would try to eat a baked sweet potato (White potato works too but has less K than sweet potato), broccoli or something else high in potassium. I still have occasional K drops even doing this for which I take Klor-con for. I am not on Florinef and have no other "typical" cause for losing K and nobody has figured it out.

I can imagine how frustrated you are. I do hope you will be feeling better soon and will get some answers.

Do what's best for you but I just want you to know that just because you feel worse or feel more down doesn't mean we don't want to hear from you. We're here through the good and the bad!! Okay :)

Hugs and hope tomorrow will be a better day for you

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I only take two meds, my valium at 4-5 mgs a day and my hormone when I can remember it. I keep it in the container with my valium, but I miss it because it looks like my valium.

I have tried just about every bp med in the world. I also think I am having tia's, but who knows. If I am, they don't seem to care.

I used to know exactly what was going to happen in my body during an episode, and now I have no clue whatsoever. My body is doing things it has never done before, so I am a little caught off guard. I told hubs tonight I was so tired of sitting or lying on my butt all day, but then when I get up, all I want to do is sit or lie down.

Anyway, I appreciate everyone's responses and your support. I know you all know this story, and that gives me a little comfort. I have decided if people can't accept it, too bad. I know I'm sick, hubs knows and all the people that are really important to me know, so to heck with the rest of em...stickaforkinmei'msodonemorgan

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Dear WellDoneMorgan,

sorry you had a full on syncope and ended up in the ER via an ambulance. I know that if you weren't in dire straits, you'd have probably kicked and bitten a few of those people (or at least I'm imagning doing that for you after the past several visits).

I don't know what to say other than that I hope they figure out what's going on -and a way to help you feel better enough to be upright for longer than just a few minutes.

Nina

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Morgan,

Just to pick up on a small comment you made about the TIA's. For a while they thought I may be having TIA's, eeg's were normal, turned out to be sudden hypoglycemia, just part of the dysautonomia menu.

It's so scary knowing something's awfully wrong and not getting adequate medical care. Been there for close to 3 years, and if it wasn't for the insistance of a doctor friend of a friend who saw me at my worse, I probably would have given up. That wouldn't have been a good thing, beacause after a long time, they're finally onto what it is (aside from the POTS) and left untreated, it could have been more than serious.

I'm told that Columbia Presbyterian hospital in NY has some kind of distance medical consultation service, possibly for free. It's far from ideal, but maybe it's worth a shot. Also, I know you're wiped, but please please keep good records of everything. Things written, summarized, and to the point without humor seem to be most helpful to doctors with limited attention spans.

Sending love and prayers,

Ariella

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Dear Morganwhenisitgonnastop,

I am so very sorry to hear about all your trouble. I am very glad that you have such a caring husband and son (especially with them being sick themselves). You are a very special and family!!! Hope things will be better soon for you, Morgan. I will be thinking about you (and your family)!!!

Oh and I LOVE the little dog, wish I had one myself!!!

Corinawhocan'tstandwhat'shappeningtoyouandyourfamilyallthetime

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I'm sorry you're having such a bad time of late. I sincerely hope that you find some answers ASAP!

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Morgan,

We have not met, but I have to say, do not give up. Somewhere there is a good doctor who will help you. Maybe if you think it is adrenal find a website and maybe they have a list of drs? or a wonderful group like this? I do not like ERs and you must certainly know you are not alone. I am not sure what is wrong with some of these drs. I am just thinking maybe that is a way to hide their "I don't know what is wrong with you." I hope things get better. JenniferTX

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Morgan,

I'll tell you, you sure have had a rough time lately. I am so sorry. I know what it's like to have EMTs talk like that around you all too well!

I'm thinking of you and hoping you magically feel better soon.

Amy

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