Rachel

Glad to hear it's over.

When will you know if the injections are helping or not?

Hugs,

Rachel

PoohBear,

I will be thinking of you and praying for you. I hope that all goes well.

Rachel

I'm so sorry Sue. That is hard to have to lose a family pet.

Hugs,

Rachel

Wareagle,

I know this sounds gross, but another thing that helps me when I'm sick is a saline spray. I'm pretty sensitive to meds too, but this is safe. I use my son's "little noses" saline spray. You can spray it into your nose, or drip it in if you want a lot of salt water to run through. It helps to clean the gunk out and shortens the length of a cold.

If you are really daring, you can try a Neti Pot. You just fill it with warm salt water, pour the water in one side of your nose and let it drain out the other side. It sounds so gross, but it gets the germs out before the cold gets bad. It works best if you use it when you first feel a cold coming on. If you're brave, here's the link for a Neti Pot! http://www.internatural-alternative-health...i-Pot-Wash2.cfm

Rachel

P.S. I'm not brave! That's why I use my one year old son's "little noses" spray! But my husband always uses the Neti Pot and it works amazingly well for him.

Amby,

Yes, your symptoms are consistent with POTS. A heart rate rise of 30bpm or more upon standing is what it takes to be diagnosed with POTS. The increase doesn't have to happen the very second you stand up. It can take a minute or two, or even 20 or 30 minutes to see the rise.

Not everyone with POTS has the drop in blood pressure. But, you might find that if you continued to stand still for 10 or 15 minutes that your blood pressure would drop.

Hope you can get a diagnosis and treatment soon!

Rachel

Wow. If gaining a pound or having a boyfriend was all it took to be better, most of us would feel pretty good!

Tessa,

I'm glad to hear the good news! That is wonderful that your doctor is willing to learn about POTS and treat you. Good luck with everything!!!

Rachel

I've never had a problem with cough drops. I like the sugar free Halls cough drops. They really help when my throat is sore.

Hi Lauren,

I'm so sorry about everything that happened. That must have been scary.

I don't have any experience with Lyrica. All I know is that my brother-in-law tried it, but didn't like it, because it was over priced and didn't help him any.

I wish I had some words of wisdom to offer. But I don't have any experience in this area.

Take care. I'll be thinking about you.

Hugs,

Rachel

Hi Tessa,

I just wanted to say that I hope your appointment goes well tomorrow. I'll be thinking about you. I hope that your doctor is very kind and that he will have some good ideas for treatment.

Good luck,

Rachel

Emily, thanks for letting us know how Melissa is doing. We keep you quite busy, huh? Make sure you get rest too!

Melissa,

Thanks for passing on updates to Emily so that she can pass them on to us! I'm glad to hear you are home and in your own bed. Rest and recover. We miss you here on the forum, but we aren't going anywhere. We'll still be here when you're up to "stopping in."

Take care,

Rachel

Ami,

Hope your birthday is happy and wonderful!

Rachel

Does anyone know how Melissa is doing? Did the procedure go well? Did she arrive home safely?

Still thinking about you, Miss Sunfish.

Oh yeah, I'm sorry. I forgot about the PICC line.

I hope you can enjoy watching your son.

My apologies,

Rachel

Hi Liz,

Welcome to the forum. That's great that you don't have severe symptoms.

The severity of POTS varies greatly from person to person. My health has varied a lot over the past 12 or 15 years that I've had POTS. At times my only obvious symptom was nausea. When I was first diagnosed with POTS I was a year-round competitive swimmer and was in otherwise excellent health. I started having difficulty breathing at swim practice and in swim meets, but all of the tests showed that I had an excellent heart and lungs. Eventually a nurse pointed out that my heart rate was fast. That's when we got on the right track and found POTS.

I had a lot of ups and downs with POTS and NCS for about 2 years, and then I was fairly functional for about 6 years. I was able to be a camp counselor for 4 summers, and I was able to finish a 4 year bachelors degree. Only those who knew me knew that I struggled a bit with my health. The last 2 1/2 or 3 years have been very difficult health wise. The doctors don't know why it has gotten so much worse.

Anyway, all that to say, the severity of POTS can vary over time and from person to person. So you can feel pretty good, but still have POTS. Enjoy the fairly good health!

Rachel

Amy,

I hope that everything goes well for you. I will be thinking about you and praying for you. Let us know what you find out.

Hope you can enjoy the hotel and pool a bit too!

Rachel

Hi Angela,

Thanks for your reply, explainging some things, and for expressing your concerns.

No, they didn't give a reason for doing the stress test, other than it is just one of the tests that they perform on every new patient.

I'll have to call the place back and see if I can speak to a nurse and ask her some questions. I've spoken with the receptionist, but of course she doesn't know enough to answer questions.

Rachel

Stacey,

I'll be thinking about you. Hope all goes well.

Rachel

Dear tired but ever-hopeful tearose,

It is good to hear from you. I was just thinking about you today and wondering how things were going for you.

Wow, the great Wizard of Oz is making you do all sorts of things. I hope that the tests give some good answers, and that the doctors can come up with some good plans for future treatment.

Thanks for letting us know how you are doing.

Rachel

Hi Heather,

Welcome to the forum! I think you will find this to be a very caring and understanding place. As you continue to read different posts you will find people with symptoms very similar to yours. We all struggle with a lot of the same things.

I'm so sorry your health is so bad right now. I hope that things can get better for you. It is good that you get up to walk around occasionally. It might not seem like it is helping, but it is probably helping more than you realize. You could also try the Yaz exercises. You can even do some of these while in bed! Here's the link to the exercises: http://www.21cent.net/chiari/yaz.htm

My health has gotten better, worse, better, worse over the years. At my worst I was stuck in bed all day. I could barely crawl to the bathroom and back to bed. I couldn't get to the kitchen to get food, so unless someone was around to help me I was stuck in bed hungry all day. So I do know what it is like to be almost completely bedridden.

I have gotten a bit better since then. I can usually walk around the house some by myself during the day. And I can go out in a wheelchair for short periods. I guess that isn't much of an improvement in quality of life. But it is some. And every little bit counts! I'm still going to doctors and trying to figure out what can help me.

It sounds like you are doing some good treatments. Do you have a good doctor there in Canada?

Again, welcome to the forum, Heather. We're glad to have you here. I hope you can find some help, friends, and answers here!

Hugs,

Rachel

Thanks everyone for your feedback. I appreciate it very much.

Katherine: Yes, my husband will be with me. And he is good at advocating for me if I get too fatigued and brainfogged to do so myself.

Lauren: I'll take your advice and try not to overdo it on the stress test.

Pat and Michelle: I'm not sure if the chemical stress test would work for me or not. I'll have to look into it.

Mom4cem: I am scheduled to see Dr. Moore in March.

I do have one more question for anyone who has been to the Dys/MVP Center. Is there a good (and cheap) place to stay nearby? I will need to stay for 3 nights probably, just because early mornings, traveling, and tests don't mix to well for me! I do have insurance to cover the doctors bills, but we don't have the money for all of the gas, food, and lodging for 3 nights/4 days. I called the Ronald McDonald house, but they only take children under 18. But if you know of any other place like that that takes adults, please let me know. I need health care, but don't want to go broke getting it.

Thanks,

Rachel

Thank you for the update, Kristen.

Melissa, I will be thinking about you and praying for you today as you travel. I hope that your procedure goes well.

Take care little fishy,

Rachel

I've never heard of the chemically induced stress test. How exactly does it work?

Hi Lukkychrm,

You certainly are facing a lot right now. And I'm so sorry about the assault.

Like others said, stress can make POTS worse. If there is any way to relieve some of the stress, that could be just as beneficial as new meds.

Wish I had a suggestion for a great med to try, but unfortunately I don't. I've never had much success with meds. Salt, Gatorade, water, and compression stockings work the best for me. But keep looking into new meds - there's bound to be one for you! I'm still trying to find my magic med too!

Would it be possible to have a phone consultation with your doc so that you don't have to fly down to VA? Maybe he would have a suggestion for a new med and could order a new prescription for you.

Hang in there,

Rachel

Hi,

I don't have any advice to offer, but I just wanted to say that I hope the treatment goes well on Friday. And I hope that the injections, though painful, will bring some relief in the long run. Good luck with everything.

Rachel