gdomaracki

I'm not sure if you can pass out after your heart rate has gone back up, but I know when I had my tilt table test, mine had a sudden drop from 130 to 80 and that's when my blood pressure dropped below measurable and I passed out.

How is your monitor working for you? Did they come set it up for you?

Have a good day

Nicole

Boy this is an odd subject, but I thought it would be best to ask you guys!

I am having a problem with excessive sweating. I even wake up during the night numerous times covered in sweat. Along with this, I noticed a change in the odor. (i know, gross) But seriously, it's like I need to shower a few times to get rid of this. I have good hygiene, haven't changed any of my medications, and am really confused and am in need of some input.

Thank you all for ideas/suggestions?!?

Nicole

I had a rash with the hypoallergic patches, but it wasn't as bad as the patches that came with the monitor. I would suggest calling cardionet to see what they can do for you. Make sure that you are moving the patches around, allowing your skin to breathe.

How is the monitor working for you otherwise?

Nicole

I'm sorry that you too have to deal with this. My family and friends make comments all the time, that maybe I would feel better if I would actually get up and do something. It hurts, but deep down inside I know myself better than anyone else. If I don't lay down and be that bum they claim I am, I'm only going to feel worse. Guess it goes along with having an invisible illness. Adults don't like to believe what they can't see, but if we were only like children and their unseeing believing. (santa would still be real )

Sending hugs and smiles your way!~

Nicole

I'm sorry to hear this dear! You definately need someone to drive you afterwards and keep an eye on you bc depending how it goes, you might be a little weary afterwards. (but this all depends) I would try talking to your dad again, bc I don't think that having your daughter along is necessary or good. You going to need some kick back time to regain strength, time to yourself. I know it is hard for family members to be supportive, my mom is the same way with me. She didn't believe that I was ill for the longest time. Now, she just tells me to suck it up and deal with it which sometimes helps me push myself. But sometimes I need a shoulder to cry on and a big hug!

Hope everything works out, you still have a few weeks! I know it is nerve wrecking.

Nicole

I'm a drooler too!

I have problems with excessive salivation from time to time, and then dry mouth also. Through the research I have done on dysautonomia, I do believe that it is related. It's kind of like the problems that we can have with our eyes because they are "automatically" controlled by our nervous system and bc ours obviously doesn't work properly, our salivation process can be affect also.

Nicole

The base will stay at your house, hooked into your phone line. You have a small monitor that clips to a belt and then the monitor that allows you to send them symptoms.

I'm almost positive that they will come to you! The lady that came to set mine up had a long drive, she said she sets up about 3 a day.

And another thing, if you have any questions or problems they give you a number and the people on the other line are absolutely WONDERFUL! They will get you hooked up with whatever you need and in a timely fashion.

G-night dizzygirl~

Nicole

Welcome to our potsy world!

If you leave your house or walk out of the room with the base in it, you have to take the monitor with you. The cardionet person who will come to your house, will try and put the two bases that they give you in rooms that you are most in. (bedroom being one) Just a hint~ you can't go real far without the monitor, maybe a room down and then it will go off. BEEP!

Like you said before, you will have 4 leads on at all times unless you are going to take a shower, then you have to turn the monitor off and remove them. They tell you that you should change the patches every other day, but I did it every day cause they end up falling off.

Any other questions, just let me know. Like i said before they were great! I spent the month before cardionet, wearing an event monitor. It was a nightmare! My old cardio gave me a broken one and didn't know it, I had to order a new one which still didn't work half the time. And it didn't monitor me 24/7, only when I would push the button. (and that was only for 30 seconds) It was a total waste.

You are definately in good hands!

Toodles,

Nicole

As it begins to get warmer out, I am excited for spring/summer but nervous. This will be my first summer with pots and I'm not quite sure how my body is going to react. I have read that many of you cannot stand hot weather and must be in a control temp. environment. This brings up my second question, I love the beach, will I be able to go and soak up rays? I know we all have different reactions being potsy people and all, but is it common that we cannot be in warm weather?

What should I expect and precautions to take?

I do hope I can still go to the beach!

Nicole

Definately go with the hypoallergic patches. I tried the ones that come with the monitor and boy did i get a bad rash! And the thing does beep ALOT, so be ready! Its so worth it though.

Best of luck!

Nicole

I used cardionet last month and they are absolutely amazing!! They actually send someone to your home to set it up and show you how to use it. The monitor is like a cell phone, so if its not on the base it can still transmit information. And like you said, they will call you if your heart is acting up like mine was doing. It gives you a piece of mind to know that someone is constantly watching over you. I definately slept better, and its a great way for your eps to see what your heart is doing everyday. You wanna make sure to record each time your feeling bad, so they can make sure it correlates with the times your heart is abnormally beating. (tachy, brachy, etc) Let me know how everything goes, i know personally that they were great!

Nicole

I'm so glad that you have found a pcp to listen to you! It seems we all travel down that road to find someone who will take time out of there schedule and open their minds to a newer chronic illness. Sometimes I do believe that because they cannot see the illness physically, it makes them turn away. I luckily have found a pots doctor that COMPLETELY understands and was taught by Dr. Grubb and I also have a pcp who actually is doing research so he can help me along the way. It really is a true blessing!

I hope you have found yours!

Nicole

I'm normally up around 2 or 3am. Get on here and we can chat our ways back to sleep! lol.

Actually, I went about a month with normal sleeping patterns and about 2 weeks ago I'm back to my old self. I have very vivid dreaming, night sweats/chills, and heart racings. And to top it all off I'm dead tired cause I just started physical therapy. You would think I would sleep all the time.

As far as help, you could try talking to your doctor. Like the others mentioned, maybe a sleeping aid would help. I myself refuse to have to take anymore medications, my luck I would be up all night!

Or you could try home remedies like warm milk, lavender, a peaceful noise maker (like the ones that make ocean noises), something of this nature.

I do hope you find rest soon!

Nicole

Don't worry deary, I tend to have the same problem. Especially when changing lighting, like going from inside to outside on a sunny day. A good pair of sunglasses might help you actually, because you might have a problem with the dialation of your eyes that is causing irrations. This is common since the autonomic nervous system controls this function.

I do hope you find something to ease your eyes!

Nicole

Name: Genevieve Nicole

Birthplace: Buffalo, NY

Kids: not yet, but in the near future

Pets: Lemon my cockatiel, 4 cats, 1 old dog,

Favorite color: Pink

Favorite flower: Tulips

Kitchen theme: Don't have my own kitchen, but I'm thinking watermelons. Something summery!

Favorite drink: Crystal Light

Last TV show you watched: Parental Control

Last movie you rented: American Pie: Bandcamp

Favorite food: Shrimp

Favorite TV show: King of Queens

Red or Pink: Pink

Favorite ice cream: Strawberry Cheese Cake

Favorite crayon color: Yellow

Ever bungee jumped? No

Eye color: hazel

Hair color: Blonde, suits me well

Farthest you have ever been: Canada

Siblings: 1 sister, 1 brother

Last time you cried: last night

Favorite game: Scrabble

Black or White? Its a tie..i love them both!

Rollingstones or The Beatles: Rollingstones

Last food you ate: Hot Oatmeal

Diamonds or sapphires: diamonds

Beach or the mountains: Beach

Sweats or jeans: sweats

Ever went skinny dipping: haha, yeah this one time.

Married more than once: not even once, but i think i found my prince charming!

What book are you reading now: Come Thirsty

Hobbies: Drawing, painting, trips to the park, reading

Favorite actor: Aston Kutcher

Favorite actress: Jessica Simpson

Favorite candy bar: Reese's Peanut Butter Cup, not a bar but better!

Ever toilet papered someones house: lol, many a times!

Gatorade: not allowed to drink sugar!

Favorite Fruit: Strawberries

Men with facial hair? Maybe a goat, like my bfs. But nothing more! I don't wanna be kissing a brillo pad.

Steak or lobster: steak

Gold or silver Silver

Not to worry. I know that when I got my done I was completely stressed out about it. And although the test will be unconfortable, think about the results you are getting from it. Best of luck to you dear!

Nicole

Florinef, I know its been discussed many times before.

I was taking it 2 months ago, when my blood pressure skyrocketed. I was on .2mg 3x daily. So, the cardio took me completely off of the medication which I didn't quite understand, but anyways. My new pots doctor has put me back on florinef but only .1mg 1xdaily. I am noticing a higher resting heart rate along with feeling more tachy, shaky, nervous, and trouble sleeping. I did have problems with these symptoms before while on florinef before, but they seemed to go away. The florinef is giving me a little boost, so I am trying to stick it out.

Any suggestions?!? *(I go to my pots doc tomm)*

Thanks! Nicole

What happens to our bodies when we smoke ciggarettes?

I know that this sounds dumb but I USED to smoke up till when I got real sick, and I noticed that everytime I would try and smoke I became lightheaded and dizzy. I don't want to start back up, but am interesting on what smoking does to a potsy person. Like, how is our blood pressure affected and heart rate.

Thanks for any info!

Hope you all have a good day!!!

Nicole

I too feel more tachy during the night and in the morning. (especially if i get up) I found that my midodrine helps get rid of those feelings in the morning, but during the night I'm on my own. Lately, I have been having a higher resting heart rate and boy does that bother me! As uncomfy as it sounds, its all pots related. But if it continues to persist, I would talk to your pcp.

Nicole

Yes, I have very distinct changes in my heart rate throughout the day. Sometimes so intense that I can feel them. I do believe this comes along with pots, as our bodies try to compensate for pooling and dropping blood pressure. I do have trouble with this too, even when lying down. My heart feels as if it is jumping out of my chest, so uncomfy! If you do think that your heart is skipping a beat, I would suggest getting a heart monitor put on for an extended period of time. I had mine on for 2 weeks. This allows doctors to see everything! And it helps, especially if you think you might have an arrythmia or something of that sort. The 24 hr monitor is nice, but its only a day. Sometimes we experience things just once a week, or maybe every other day. It made me feel alot better and maybe it can give you peace of mind too! I have inapp. svt frequently throughout each day and its good to know that mines not dangerous. Just a pain in the butt

Nicole

In your shoes, I applied for benefits to help me with all my medical bills and medications back in Nov. and here it is March. I do have an appointment this week and my doctors want me on disabiliity. I can't afford to take my medication, especially my midrodrine. And it helps so much. As far as the credit thing goes, mine is destroyed. I haven't been able to pay any of my bills and have no one to help with that. I just said forget it, when I get better I will worry about things like that but for now I need to take care of myself and get better. I try not to think about it but when the collection agencies are calling every day, its kinda hard not too. I do hope that I get benefits cause I won't be able to see my new pots doctor soon.

Nicole

Wow! I have been feeling the exact same way the past couple days. My heart rate has been up noticeably, but not my blood pressure. I can't sleep right because I feel like my heart is coming out of my chest and I can't seem to catch my breath. And for the first time, I am shaky. Gosh, I do hope you start feeling better soon as do I. I'm blaming mine on the time of the month, tends to send me out of wack.

Hope you feel better soon!

Nicole

Its called a glucose monitor. You can purchase one at a drug store, but they can be quite costly. (around $90.00) You prick your finger, which I know sounds like no fun, but you get caluses which makes it easier each time. And you put it into the niffy machine~10 seconds later, you have your blood sugar level. And most monitors store your tests. Try talking to your doctor about this first and whether he would suggest you doing this.

Nicole

Feel free to pm if you have more questions.

When I was still allowed to drive, I avoided driving at night at all costs. The lights bother my eyes something fierce, I feel as if i'm blind or something. Although, it isn't fun not being allowed to drive, I can completely understand why the doctors don't want me out on the road. Def a hazard to others and myself.

Nicole