bad syncope this morning

[dizzygirl]

Hi my potay pals..

for the past couple of days I have been feeling worse then ususal..(yuck)..have been down for a few days now.. well yesterday.I felt abosultly rotten.. and my nurse came and my HR was beating very irregular (or irratic I should say..) and it had been beating like that for about 7 hours.. going from beaing non existent hr beat to a very fast one just like that.. the nurse is like wow.. your heart is doing some crazy stuff..

I'm like I know.. now can you besure to tell the doc that! sometimes I think she wonders about my weird hr issues.. as it doesnt always act up in the office! go figure right..

so anyways I spent the day like down..

and couldnt sleep a wink all day.. which I desperatly needed.. darn insomnia is kicking my rear!.. so Its was like after 4am.. and I was laying here trying to sleep.. and all ofa sudden I felt like there were bees stinging me insdie the roof of my mouth.. and then it spread from the roof of my mouth thru my entire body in short order.. and that stinging bee feeeling got more and more intense in a spand of a few seconds.. and then this very nasty not good warm feeling swept thru my entire body.. and the tachy hit me full force as well and the dizziness..and nauseouness(SP??) and I felt my self grow very panicky.. and I pased out.. and the sad thing was I was allready laying down!!

Not really sure how long I was out.. I'm guessing a while.. b/c before that syncope bee stinging started it I had looked at the clock and it said 4:43am.. and I was thinking god I wish I could fall asleep!.. and the whole event leading to the syncope was quick..I think...and the next time I was able to look at a clock.. it was after 6am.. eww.. and OMG!

But anyways after I came too.. I still had the stinging in my entire body though not as severe.. and my muscles burned very bad.. I dont know how to describe the burning.. other then burning.. and they were (my muscles) were twitching and moving.. and I wanted to get up and get my boyfriend.. but I was having a not being able to move.. paralyse with the syncope.. I was aware of what was going on w/ me.. but I could not speak or move.... and that alone just really scares me to death.. I hate it when I get the paralyse..i really do

I mean to be aware of what is going on.. but have noway to call or get help..as you lay there twitching.. and have your heart beating out of your chest and all the things happening to your body.. the horrific burning in the muscles.. my god.. I dont know what the heck is happening to me.. but I'm sick of it..I hate this pots..

I did finally fall asleep for about 6 hours after I was able to move and what not..and I was so thirsty.. right when the stinging started.. my mouth got very dry.. and my togue felt like uh very dry.. and i t was stuck to the roof of my mouth...I have tried to drink water and juice.. but i feel so pukey.. its not going well..

i fell pretty bad today as well..but needed to talk about this syncope.. as it reall just scares the heebie jebbies out of me...

my muscles hurt very bad today..thru my whole body... and I have the usualy potsy things going on lonly intensify it by 1000..I still have some bee stinging going on in my face hand and neck/shoulder blade.. eww.. only now it feels cold inside the tissue/muscles.. geez that sounds nutty..

eww..lord help me!

Edited February 4, 2006 by dizzygirl

[Guest Belinda]

Linda..you poor girl. I am thinking of you and can understand the heebie-jeebie feeling. I hate this pots thing too. I know my symptoms are not as severe but I am right along there with ya!

That burning feeling IS wierd have you ever felt that before???

Any new meds. you have started to be contributing to this??

I think we are just being taken over by aliens!! Just the certain special group of us!LOL..

Keep your head up/down and hope you start getting some sleep!

Belinda

[DSM3KIDZ]

Linda

I feel so bad for you. I can only imagine how scarry that must be. I don't have POTS to the same degree as you but I just wanted to send you my thoughts to let you know we are here for you.

Hang in there I hope you feel better soon!

Dayna

[gdomaracki]

Aw, I feel terrible for you. It soOoO scary when all this is happening to you and you can't do anything about it, even getting up to get help! I've had spells where I just get so confused that I barely remember my own name and nothing that comes out of my mouth makes ANY sense. (i am blonde tho.) Especially in the evening I have gotten to the point where I don't remember anything, and that scares me too. I'm not sure if the burning sensation is normal, but i have it too! You are not alone, when i first got diagnosed with NCS i kept complaining about this burning sensation right before i would pass out and these muscle spasms in my stomach and legs and im sure they thought i was crazy. Now after being diagnosed with POTS, I have found that these "weird" symptoms will occur...just our bodies way of telling us that something is not right. I do hope that things get better for you! I too have had a rough past two days, its like my brain went on a vaca and nothing wants to function right. And i have no energy! You'll be in my thoughts Best of luck,

Blondie*

[Jacquie802]

Oh Linda, I wish there was something I could do for you. Have you ever had these symptoms before?? Are you on any new meds? I know when I am feeling crummy, I make sure that I am drinking enough liquids and that helps some symptoms. I have never had any paralysis (thank goodness!).

Is there anything the docs can do for that? If you are still feeling crummy see if your b/f can sit with you until you fall asleep. I think of all things I am scared to be alone, esp. when I am not feeling good. Atleast the nurse sees firsthand what whacky things can occur with POTS. Does she report to your docs?

I hope you are feeling better by now and that you have a good night's sleep.

Jacquie

[Dizzy Dame]

Linda,

That sounds very scary. Do you think you had some sort of anaphylaxic reaction to something? I just think it is wierd you would pass out laying down, and the burning/bee stings is very troubling.

I really hope that was a one-time event, and that tonight is better for you.

(((((((((((HUGS))))))))))))))) and know I'm thinking of you

-Lauren

[dizzygirl]

Hi

I did go to the ER yesterday evening.. and the ER staff was horrible to me..I had to argue with them to give me IV fluids.. the ER doc was a real jack ***!.. so very rude and arrogant and pompus! as were the nursing staff...

the only reason I went to the ER is b/c the on cal nurse who came to check me over.. made me go... she said that she wanted me to be admitted to the hospital and that that is what the doc wanted to.. (the on call doc thru PCP office).. b/c of dehydration again! and the fact that I had new symptoms.. and still am having stinging in some spots.. and so much trouble.. I really argued going with her.. as the ER they are just horrible.. and I have had such bad experiences with them...

So I really needed IV fluid..so Iwent..and they gave me a hard time about givng me fluid and wanted to know why I couldnt just drink fluid to get rehydrated.. and I told him that no matter how much fluid that I drink its not going to do the trick...the ER doc and nurses had absolutely no clue of what POTS/dysautonomia was.. (no big surprise there!) my Bp did a nose dive from being 130/89 and dropped to 95/51 upon sitting up.. big significant drop if you ask me.. and they ddint even run the full bag of fluid into me.. there like your fine you can go home now..

I was like Ok. my BP droping like that.. and the fact that I still have stinging in my face /hand and shoulder.. and my arm keeps going totally numb... and to top it all off..I had an allergic reaction to the tape and EKG leads!.. and broke out in a horrible rash.. and my skin turned so beat red and got so hot.. from my breast up.. that I looked like I had sunburn...

But you know apparently its fine to be like.. if you go to this particular ER!!

So here it is sunday afternoon.. I'm still dehydrated..and having numbness and stinging. and all this potsy stuff going on...

the Er doc was suppose to page my cardio.. and he never did.. and he never ever investigated my new symptoms.. not that I expect miracles or anything from an ER.. but atleast some reassurances that i wasnt having seizures or a stroke or something would be nice to have checked out. i mena hello!! common sense here dont ya think?

GRRRRRRRRRRRRRRRRRRRRRRRRRRR!!!!!!! I am just very annoyed.. and mad at myself that i even went to the ER.( as i know that is the kind of treatment that I am going toget..) so tomoorw I guess i call Dr. grubb and get there thoughts on the things...

Edited February 5, 2006 by dizzygirl

[futurehope]

Linda,

That sounds like a horrible experience!

Did the oncall PCP let the doctors in the ER know that you were coming? Did he leave orders with them to hydrate you?

I'm just hoping that if you need to go to an ER or to be admitted in the future, there will be a doctor who is your advocate letting them know ahead of time. Also, maybe your PCP can write a standing "script" for the ER for IV fluids so they can see what you need and take care of you.

If indeed your doctor has concerns about your new symptoms, why hasn't HE admitted you and run tests?

I certainly hope you are treated better if you ever need to go to the hospital again. I was trying to give you some suggestions for the future.

[dizzygirl]

Yes the home nurse who comes to the house called the ER and informed them that I was coming in and that I needed IV's.. part of the problem yesterday was that. it was an oncall PCP that they got on the phone they second time tha they paged my regular PCP.. and since this on call PCP did not even know what POTS was.. he wouldnt just directly admitt me to the hospital..

even though earlier.. my regular PCP wanted me admitted after an assessment was done here at home..

thye got htings cleared for me to recieve fluids at home.. but the agency did not have them available and would have to wait to get supplies.. and the nurse who came to the house.. said tht it would be after midnight or later (lastnight) before they would even get things pulled together.. and get to my house to set me up.. so that ultinately is why I even went to the ER.. I knew that i needed fluids..

So tomorrow I will deal w/ my normal PCP and cardio's and hopefully get things looked into..

But for tonight.. I needed to vent and talk to ppl who get it.. as I sometimes think I dont know how much worse tis pots can get.. then it does get worse.. and its like geez! this really bites

[futurehope]

I'm glad that tomorrow you'll be talking to your regular docs.

I understand that this stuff *****.

Let us know how things go.

[Guest Belinda]

Linda..I am so sorry for your frustration and to top it off you feel lousy. BIG HUGS TO YOU!!

I am so sick of ER docs. too. As far as I am concerned they are a big waste of time unless you have pneumonia,heart attack or stroke or your at least 75-90 yr. old.

I hope oyu start to feel better I have been wondering how you were.

Take care and keep us/me updated.

Hugs..Belinda

[Guest Julia59]

OH Linda---I wish I was there to kick those ER folks in the you know what!!!!!!!!!

All that bee stinging stuff could be diebetic-neuropathy---very pain sting like pain. I know you mentioned you have diabetes but did not have to take insulin. This is something the Docs need to take very seriously, and all of this can really stir up your pots symptoms.

I wish you could see a really good and understanding neurologist---someone you could bring up your spine issues, and the cycts on the pituitary gland to.

I'm so sorry your having such a rough time---i'll say a little prayer........

Your such a brave soul.

Let me tell you a story about a little miracle. I often complain on my LACK of courage handling all of this stuff. A while back I helped my little nephew David who was going through a rough time. He is now 8 years old, but his trouble started when he was 7. His Docs had him on both albuterol--(for mild asthma), and adderol--(a stimulant) for ADHD. Well these idiot Docs did not communicate---and the mix of meds he was on was dangerous. I was already trying to ease his fears when he was having his panic attacks/heart racing---and I noticed the two meds sitting on my parents counter. I blew up---and then I knew what David's problem was. My god---he was on four times the dose of albuterol that he should have been on---and it was at the same time he was on another stimulant!

WEll it worked out one day that I was the only one available to take him to his doctors appointment. The Doc was clueless and didn't even know he was on both meds. Fortunately she put him on another non-stimulant asthma inhaler, and he was taken off the adderol. He does have ADD/ADHD---but he is extremely intelligent---and reads on a high school level, and he's only in the third grade. His parents are kind of light in the head about medical issues and were clueless on the dangers of the mix of those two drugs.

Anyway his MOM got him a worry stone to put in his pocket. Do you know that boy nearly wore the words off that stone. Well after all of this has passed and he is now feeling much better, he and his mom went to cracker barrel to eat. He saw a bunch of stones with words on them, and his mom asked him if he wanted another one. He said no---but could I get one for Aunt Julie. He was so excited when she said yes, and then he waited with excitement for me to come over to my parets house, as he is there part time, his parents are divorced and my brother lives there until he gets his degree in teaching.

Anyway, I finally made it over there and he was bursting with excitement to give me the stone. He handed me the stone and it said "COURAGE" on it. I cried, and then I told him --"you don't know how much this means to me". "This is such a wonderful thing you have done"----thank you, thank you, thank you. He was so happy. I keep the stone in my pocket at all times. Well last week on Tuesday we had to go get my dog her license. I had my baggy jeans on that I only sit around the house in, but only now they are really baggy due to losing a few pounds, and I just wore my big coat so my jeans wouldn't show. The next day I went to look for my stone. We looked everywhere. I never took it out of my pocket. WE looked in my pockets 10 times---both my husband and I. Well---I thought it's gone---it must have fallen out of my pocket because the jeans were too baggy. I looked in the car---but never found it. Then we looked in the jeans again and again, and all around the house---including the couch and our bed---it was gone.

We washed the jeans and I just dealt with it---I was so sad. We even ate at cracker barrel Friday night to see if we could find a stone like it-----no there wasn't one. So I just gave up---but I kept praying for it to turn up. Saturday I washed all my jeans, and had to wear the baggy ones again. I had them on a couple hours going about my business---and I was standing in my living room and just rested both hands in my pockets. I felt something hard--------IT WAS THE STONE! Now we looked in those jeans so many times----checked every square inch of those pockets. There just can't be any other explaination----it was just a miracle.

Keep hanging in there----it will get better.

Julie :0)

[dizzygirl]

Julie that is sweet of your nephew to get you a worry stone!! Children are incredibly intuitive and I think have more sense and compassion in there small bodies then most adults do! And yes I most certainly believe in miracles and the power of prayer.. so things just cant be explained any other way..

I usually am very calm and try to keep a positive attitude about everything in general.. you know that.. but I dont know this past week has been so hard in so many ways! and things symptoms wise are honestly really scarring me.. there are so many diferent things going on and nobody know why!! I sometimes think that it cant all be the POTS.. but then think well it wouldnt surprise me I guess if it was.. I just have been discouraged these past few days.. and this is the one place that I can vent my emotions and what not.. and not be made to feel like I am a complete head case...

my sugar levels havent been to terribly bad lately... so.. I dont know what casued such a scary syncope epsiode....

Looks like I will have to be making some phone calls tomorrow...

thanks all for the never ending support!!

HUGS