Stormie74

Sounds like you've overcome several tall hurdles and mostly unscathed! Good news.

If it's private just ignore this, but was wondering if the cortisol stim is in the hunt for a particular issue that can be related or causal of POTS? Is it same as an ACTH stim, like looking for pituitary response or is that different thing?

That's exactly what it is... ACTH stim. The doctor said that quite often the pituitary is involved with POTS. Can't wait to hear the results!

Could you possible have sleep apnea? The doctors kept asking me that in the beginning. Just a thought! I really hope you get to feeling better....I know how taxing this can be on a gal! :-)

KC

KC, I had a sleep study recently. No sleep apnea.

I keep waking up at night with my heart pounding and feeling like I can't breathe. What would cause that? I don't normally have these symptoms during the day. How can a person be sleeping soundly and then have everything go wacky like that?

Caron

CMA, my cardio told me something similar. After diagnosing me with POTS, he said that after I get on a beta blocker and it is regulated properly, all the symptoms will go away and I will feel normal again. I've been on a beta blocker since last May. Hasn't helped. When will the normal begin?????

Caron

So glad your surgery went well. I've learned to speak up when health care people don't treat me with proper bedside manners. A month or so ago, I went to my new cardio doc for the first time. His nurse was HORRIBLE! She gave me orders and bossed me around, never once smiled. My cardio is part of a group of 12 docs, and when my nurse left the room for a minute, another gal came in. She had a badge on that said "nurse manager," so I asked her if I could talk to her a minute with the door shut. I was really nice and said "I think my nurse is having a really bad day." She asked me to explain how she was acting, and I told her really nicely. I found out a week later that she was fired.

So be nice, smile, explain the details the best you can, and take the anger out of it. I think it worked for me!

Caron

I'm doing much better... all that is left over from having the H1N1 is an irritating, dry cough. It's almost gone. I had my Cortisol Stimulation Test on Nov. 10th. It went ok, but the injection caused me to get sweaty and feel spacey. Nothing I couldn't deal with. I was a little nervous afterward about walking out of the hospital to my car, which was quite a distance from the door. Feeling POTSY and with symptoms from the test didn't help, also hadn't eaten in 14 hours!

Waiting to hear back from the doc... hopefully this week!

Caron

If I have anything with MSG, I get tachy.

YES, absolutely! I was diagnosed with it about 10 years ago, but never put on anything to help with it. I feel like a space cadet! Some days I can totally focus on whatever I need to, but those days are rare. And on top of that, there are many days that my brain throws me a massive "ear worm" that I fight with all day... and it's always some stupid song that I hate! What's up with that?

Maisie,

{{{{{{{HUGS}}}}}}}}

Keep us posted on how you are doing. Try to keep your chin up and know that we are always here to talk to. When it seems like nobody understands and the world is getting harder and harder, lean on us. Feel free to contact me privately. I'm never far from a computer.

I have found it very helpful to have lots of good reading around to take my mind off my health problems. If you are a reader, find some funny books or some uplifting reading. It won't take the problems away, but it can hopefully provide a distraction, even if only for a few minutes at a time.

Good music, good friends, and a good doctor are all a must.

Again,

{{{{{{{HUGS}}}}}}}}

Caron

I was told giving yourself a shot of B12 is more complicated that say an insulin injection...the placement of the shot was too hard to reach on my own.

It is not necessary to give a B12 shot in the muscle. It can be given subcutaneously, which is easy to do. I used to give myself these shots once a week! Easy as pie to give, no different than giving an insulin shot. Now I give them to my hubby who is a scardy cat about giving himself a shot. Believe it or not, I used to give them to myself in the stomach, and never ever felt them.

Caron

A few weeks ago when I was finally diagnosed with POTS, I posted on Facebook to my friends that I now know what my problem is, and explained a little bit about it. Someone wrote back to the whole group something about "you just need to remember to stand up slowly when you get up, then you won't get dizzy."

YEAH, RIGHT! Now if we can all just remember to do that! Think of all the time and money spent trying to learn what is wrong with us... if we had only known that all along...

Sorry I'm being sarcastic. Must be the weather, or the fact that I had a Cortisol Stim test this morning. Yuck!

Caron

My cardio added an evening dose of my beta blocker (Metoprolol) to my regimine, but now I feel like my bp and heart rate are too low. I feel like I'm dragging all the time. Is anyone else having problems like this?

Caron

YES, I have that! Over the past few years, I have been belching like a fat old man. When I have a hard time breathing, I find if I can get up and move around, it shifts things enough to start the burping going, which makes me feel better. I've been checked for celiac, but the tests came back negative. But if I have any pasta or very much bread, I am in agony. I'm better off staying away from wheat entirely.

Caron

Well, I hate the cold because it causes so much more trouble with my symptoms.

In my body cold air is clearly an adrenergic stress.

This abstract explains that adrenergic stress and poor memory function are related while cognitive flexibility remain intact. It makes me feel like this is why I go blank in the brain with some memory issues while I can still make good decisions.

Just wanted to share what I found...

tearose

Where is the abstract? I must have missed that...

Caron

I would like to give them a try, but I break out in a rash from the elastic that is in regular nylons. I can only imagine what compression stockings would do to me. Also, I am far from being petite. Do they come in sizes for larger women?

Anyone have any good tips for heartburn/acid reflux? I woke up in so much pain last night!

I am a fan of TUMS. They are my friend, and I always take three before I go to bed at night. I find when I have those "strange feelings" we all get, if I take a few TUMS it usually helps. I used to take Prilosec OTC and then by Rx, but I feel better when I'm not on it on a regular basis. I always try to take as little medication as I can get away with, though.

Caron

I gave myself B12 shots for several years and they really helped. It took me a few shots to get over the strangeness of poking myself, but it never hurt. Now, I take a B Supplement daily. If I don't take it, I notice it.

Caron

Is there a relationship between POTS and thyroid disorders? I was diagnosed with Hashimoto's many moons ago, and diagnosed with POTS recently, though I know I have had it my whole life. I am finishing up a yucky week of having the H1N1 virus. I was sick all week and on an anti-viral med. I had a fever, but now it is back to normal. I mean, NORMAL! My temp for the last 20 years has been something under 97.6. For the past few days, it is regularly around 98.3-98.5. It feels like I am on too much thyroid medication now, though my dosage has not changed in months. Anyone have any ideas?

Thanks,

Caron

I find at times I will need to "have a talk with myself" and force myself to breathe long, slow deep breaths for awhile. Controlled, slow breathing helps me to relax instead of go into a breathing panic. Also, cool, drier air is also best for me. I can't sleep with my nose under the blankets... I feel like I am suffocating!

I'm just getting over H1N1. It was not a fun week at all! Drink LOTS MORE WATER, tylenol, and get to a doctor for an anti-viral med. They really do help!

Caron

Thanks Stacey. Actually, we had to postpone it because I was up all night with the H1N1 virus. Yup, on top of everything else, I now have the Swine Flu!

Caron

Has anyone here ever had a Cortisol Stimulation Test? I have one scheduled for tomorrow morning. I don't mind blood tests at all... but wonder if anyone has had a reaction from the injection that is given? I have to go to work afterwards and wonder it I will be able...

Thanks!

Caron

We put in a whirlpool bath when we built our house 12 years ago. I love sitting in their reading with the water really hot, but every time I have done that over the past few years it triggered a bad spell. I'm cold ALL the time with a low body temp, so a hot bath really sounds inviting. Instead, I crawl up in a ball on the couch with 1 or two quilts, layered clothing and socks and try to stay warm.

No hot baths for me anymore! sniff sniff

Funny you should ask. I took Fish Oil for years, then stopped for a little while to see if it made a difference. During the time I stopped, hubby and I went out for dinner. I ordered shrimp. Yummy! Been eating it all my life, but this time I had a horrible allergic reaction. Tried it again a few weeks later in a small dose, and the same thing happened. So I can't eat shellfish, and when I tried to get back to the Fish Oil, had a similar horrible allergic reaction.

Yesterday when I got groceries, I bought some ground flax seed. I sprinkled 1/2 tsp into herbed rice that we eat frequently. Guess who had a horrible allergic reaction and a horrible night?

1. I would LOVE to do a long hike like that, but it has not been possible in my lifetime.

2. I was on Xanax for several years, with the doctor constantly increasing my dose. It never helped, and I went off it. Withdrawl is he&% !!!

3. Cardio is not an option for me right now. However, I feel much better when I work out on the weight machines. At night, I turn the TV on and sit/lay on the floor and do stretching exercises (and play with my cat). It helps!

4. When I feel horrible... REALLY horrible, the best thing for me to do is crawl in bed and sleep. Sometimes, for several days!

5. Stressful events are killers for me! I used to be an elementary teacher/principal, and every holiday vacation found me doing a crash and burn in bed to recover from the stress of getting ready for the holiday. Thanksgiving Day and Christmas with the family all coming to my house for dinner is also stressful, but I have an awesome husband who will do much of the cooking and cleaning.

Caron