dawn

My heartrate is always irregular when I get up from sleeping. I do sleep flat and am really thinking about trying to sleep on an incline (I tried it in the past and always woke up on the foot of the bed).

I just had a 30 day event monitor and recorded these heartrates when I get up. It showed PAC's around 78 per hour. It was read as "normal."

I guess I need to adjust my thinking to it's normal, it sure doesn't feel like my heart is pumping good enough, but my echo was fine.

My psychologist says I'm just to focused and aware of my physical body.

I would like to see her awakened from sleep with her heart beating 150 and skipping.

I jerk alot and talk alot as I'm falling asleep. I also know what you mean about the shakey feeling inside, I have it every morning for a few hours. HATE IT!!!!!!!!!!!!!!!!!!!!

This just *****, all of it.

Dawn

Congratulations!!!!!!!!!

What is with all this fainting all of a sudden.

I bet you looked beautiful upright or on the floor to all your friends and family. They see the internal you and love you.

It is hard on our kids sometimes. I know my 24 year old talks to others about me but with me he is always positive and up beat.

Ice pack those bruises and remember only the good.

Hugs

Dawn

I had the same issue. You might want to call and ask if you can take Prilosec OTC (2 tabs) instead. My doc said it would do the same thing.

Dawn

HI,

Everytime I have an adrenaline rush, I want to call 911. From past experience I do not go to the ER anymore. If I become unconcious and don't wake up, if I'm bleeding profusely, if I have a seizure, if I get weakness on one side, or an obvious heart attack, I will go otherwise forget it. I have decided it's just not worth it because no one knows what to do.

It's really hard to ignore the symptoms, but some of us are also hypersensitve to the physical changes in our bodies. (ME)

I'm seeing a physcologist now to try to learn some techniques to help me through the tough times.

Dawn

Yup, even my lower legs get blue. It was like that one day in the clinic. My doctor said Raynaulds Syndrome. He said put your legs up!!!!!!!!

I notice my toenails are really blue at the end of the day or after a shower.

My husbands are too though and there is nothing wrong with him.

Dawn

Jacquie

I have mornings like that (heart all over throwing constant PAC's). I haven't found anything that helps. I just wait it out and it usually passes. Usually if I make myself get up and move it gets better faster. My doctor assures not to worry unless I pass out. If I can fall asleep sometimes it gets better too. It's just when I lay I'm more aware of the arrhythmias.

I used to have racing heart during the night but since I started on Klonopin 1 mg at bedtime it no longer does this. My doctor said it may not make you sleep but it will give your nervous system a rest at night and I think he is right.

Feeling for you

Dawn

i love this and i will fill it in later, but just a little question: what is skinny dipping???? oh and can you explain the toilet papering someones house?????

corina : )

Corina,

Skinny dipping is swimming nude

Toilet papering someone's house is wrapping toilet paper in their trees, throwing it up in the branches as far as you can, wrapping it around their house. Bushes, cars anything on their property. Usually at Halloween, maybe it is a midwest thing. You know we don't have alot to do here.

I have autonomic neuopathy too. It's just part of POTS I think.

I don't even think about it, just try to manage my symptoms as best I can.

Hugs,

Dawn

Name: Melanie Dawn

Birthplace: LaCrosse, WI

Kids: 3 boys

Pets: 2 dogs

Favorite color: Yellow

Favorite flower: sunflower

Kitchen theme: Magnolia's

Favorite drink: Latte

Last TV show you watched: ER

Last movie you rented: Catch Me if you Can

Favorite food: Chocolate

Favorite TV show: ER, Monk

Red or Pink: Pink

Favorite ice cream: Cookie Dough

Favorite crayon color: Purple

Ever bungee jumped? No

Eye color: Blue

Hair color: Blonde/brown

Farthest you have ever been: Washington State

Siblings: 2 brothers, 1 sister

Last time you cried: 2 days ago

Favorite game: Scrabble

Black or White? Black

Rollingstones or The Beatles: Rollingstones

Last food you ate: Cheerio cereal bar

Diamonds or sapphires: diamonds

Beach or the mountains: Beach

Sweats or jeans: sweats

Ever went skinny dipping: YES

Married more than once: yes

What book are you reading now: God's Promises

Hobbies: scrapbooking

Favorite actor: Clint Eastwood

Favorite actress: Meryl Streep

Favorite candy bar: Nut Goodie

Ever toilet papered someones house: YES

Gatorade: Watermelon Ice

Favorite Fruit: Honey dew melon

Men with facial hair? No choice, he won't shave

Steak or lobster: lobster

Gold or silver Silver

OK I know it's hard to sit this long-I'll stop!!!!!!!!!!!!!!!!!!!!!

Yes, Yes, Yes

I can feel my husbands tension as I lay beside him in bed at night. He will never share his feelings but I can sure feel them, anger, frustration whatever it is I feel it. I think it makes me sicker.

Being a nuse I've always been in tune with others feelings and needs. Don't know if it is something I learned or was born with.

When a family member is hurting, I obsess to the point I can't sleep.

Feeling my children's pain is the worst.

Dawn

The only reason I never tried it, was I read somewhere that sleeping like that can really make make your BP drop. I know my BP is really low at night from the times I have been in the hospital. Plus what about the blood pooling in the legs which is also a problem. My ankles are puffy when I go to bed. Do you wear support stockings to bed???????????

Dawn

My doctor suggested I don't fly, so I took the train this summer. It was actually enjoyable. It was a 2 day trip. He didn't want me to fly because he guessed I would faint and put everyone in a tizzy. My BP runs very low though even at this low altitude.

Dawn

Hope you are starting to feel better

I'm a big believer in vicks vapor rub. On my chest, on my throat, on my back. I can't take anything orally but Tylenol, so VICKS has become my super hero.

Hugs,

Dawn

Klonopin 1 mg works well for me. I sleep about 6 hours straight. Then I can usually fall back asleep once I take a beta blocker to slow down my heartrate.

Dawn

Hi,

My neice is 40 and is pregnant. This is her 4th pregnancy. She called me last night she is so sick, every symptom she has makes me fearful she has POTS. Her husband took her into the clinic. They did find her ferritin was low (7), I'm hoping that is what is causing her symptoms. I've read alot about people who get POTS after delivery, just curious if anyone ever heard of anyone getting it while pregnant????????????

Thanks

Dawn

I have this alot. My oxygen sats (with the finger thing) are always fine when I have went in complaining of this symptom. I have found I often get it when my stomach is not emptying. You have to relax and just try to breathe in and out in your belly. I put a hand on my chest and one on my belly and make sure only the belly hand goes up and down. If I put on headphones with a good CD playing it helps alot. I did some biofeedback and have actually gotten too good at this, my respirations were 4 per minute. And I wonder why I'm dizzy LOL.

I know all too well about the panic feeling you get, I used to run around the house saying "I can't get enough air" it's an awful feeling. But if you focus on it you end up hyperventilating. You have to relax!!!!!!!!!!!!!!!!!!!

Plus always remember the worst that can happen is you will pass out and your breathing will return to normal.

I am not minimizing how you feel, it's just I have had this symptom since I was 18 and am now 50. I have went to the clinic many times and they have always said panic. It's like learning to meditate and clear your mind of thought, if someone says don't think of a pink elephant that is all you will think about. If you focus on I can't get enough air you will keep having that thought and sensation.

The mind is a tricky thing

All the best

Dawn

Figure skating, probably as a couple with a really cute partner.

When I was little the couple across the street had 7 children. They had a lot next to their house and every winter they would flood it and we all had a huge skating rink. I would go home for supper and eat on the bottom step of the entryway so I could leave my skates on and hurry back over there. LOL

God Bless You Bob for that memory. He spent hours and hours holding the garden hose.

Dawn

Hi,

I've been thinking of trying Cymbalta also. My doctor and psychologist agree it's worth a trial. My understanding is with hyperadrengeric POTS, we have high levels of norepinephrine in our circulating system. Cymbalta has no effect on that. It works on our central nervous system which is entirely different. Once the brain receptors are full of seratonin and norepinephrine we shouldn't get the surges.

I've talked to few pharmacists as I am afraid it will increase my anxiety. They have all said they thought it would make me sleepy at first. At this point I guess anything is worth a try. But just thinking of popping a new pill gives me anxiety. The lowest dose is 20mg and you can't open the capsule and pour half out (already asked the pharmacist that one). He said it may have a tendency to raise BP

Still thinking

Dawn

Can you have someone take you to an urgent care clinic this evening so you can get started on antibiotics. I usually take dramamine before a car trip. It takes the edge off the anxiety too. I vomit and get diarrhea sometimes just thinking about something I have to do the next day.

You are not weak or a failure. We're all in this together and it is real.

Dawn

I've never tried Paxil. I have used prozac, effexor and lexapro. My doctor said because I have anxiety issues he would not prescribe Paxil or Wellbutrin as they would make the anxiety worse.

Dawn

I always wake up during the night and in the morning have a headache.

BP is too low. I drink a strong cup of coffee and it goes away.

Dawn

When I was diagnosed it was by a 24 hr urine collection which showed elevated catecholemines in my urine. I have been on SSRI's twice, both times for a couple years. Prozac didn't seem to do much. But, effexor which is for serotin and norepinephrine worked well for a couple years. The second time I tried it the stomach distress caused me to quit taking it. Cymbalta a new SSRI is the one they are recommending now. I haven't tried it. I'm not on any SSRI now, haven't been for about 5 years.

They help some people and others they don't.

Maybe you could try a different one if Celexa doesn't seem to be working.

It's really an individual thing, no way to predict if they will help or not. But worth a try.

Dawn

I have a lawyer doing it all. He said not to talk to anyone at social security. If they call I'm supposed to just give them the law office's number. All they do are disability claims. They are called The Shaw Group and cover any state in the US. Actually I am very fortunate as my previous employer pays for this. I was a school nurse and got all the good benefits that adminstration has.

Dawn

Well written post.

We cry, we struggle, we want to give up. Then we get up and continue to fight.

I know I'm not crazy and that is all that matters.

Dawn

Mary,

I am praying for you. When you walk into the clinic say "God, I am expecting a good report."

I do this when I go for my appointments. It helps tremendously. Also when you are in the MRI machine, you are not alone. God is there. Ask him to send an angel to be with you in there if you are really afraid. When my faith is challenged my son Ben who is 24, always responds "When we are weak he is strong." Then I say that a few times and feel so much better.

Don't be aftaid to ask God for help, you are his child and he wants what is best for you.

Dawn