Rachel

Good luck, Becky! I hope that all goes well tomorrow. They must really want you to do the job if they called you back in half an hour!

Rachel

Thanks, Deucykub, for all of this info!

This might help healthy people to understand what we're going through. I can now tell people that I am constantly in either stage 1 or stage 2 of hypovolemic shock! Maybe then they'll realize that I'm not lazy and making things up!

Rachel

Thank you, Emily, for letting us know what is going on with Melissa. I will keep praying for her. Can I send her a small package at the hospital, or is she only allowed to get letters?

Melissa, I will keep praying for you. Know that you are loved and missed here on DINET.

Rachel

Hi Ariella,

Glad you're back. I'm don't think we've ever met on the forum before, so it's nice to "meet" you. Thanks for thinking of all of us! Glad to hear your POTS is doing better.

Rachel

I don't have spider veins, but I do have blood pooling.

Rachel

Glad you're having fun with Bernie. I'm looking forward to seeing pictures!

Rachel

Amby,

I'm sorry you're having such a terrible time with your doctors. Did the kidney specialist give a reason when he said that you didn't have SVT? That is really strange to be "undiagnosed" right after being diagnosed with SVT.

I have a friend with blood pressure that is always about 90/65. That is normal for her, but she is also in excellent health. If you are having problems with tachycardia, then a bp of 88/65 is probably not normal. Average bp is 120/70.

I hope that your visit with the EP goes well. When you are there, ask them to run orthostatics. I think this is usually done at EPs offices, but you can ask just in case. Maybe it will show something. Even people with POTS can have good days where they aren't so symptomatic. Once I had my heart rate and blood pressure stay the same when I stood up for orthostatics. But every other time I stood up the rates changed dramatically. I just happened to not be symptomatic that day for some reason.

I hope you get to the top of the rollercoaster soon, that you find some good answers, and that you don't have to go on any loops.

Good luck with everything,

Rachel

Hi,

I don't have any experiences to share, I just wanted to say that I hope all goes well.

Rachel

Hi Lina,

Welcome to the forum. I hope you find the information on the DINET forum helpful.

My answers to your questions:

- Do any of you have the sensation that your feet/toes are burning?

My feet had been cold for years, but then for the past year they were hot. My feet would be warm and sometimes feel like they were burning. I slept with ice packs on my feet for about 9 months. Recently, though, my feet have gone back to being cold. I don't know what causes this. But I figure I can blame it on POTS!

- For those of you who don't take sleep meds (dr said sleep wouldn't be a problem but it is) do you wake up to strange sensations in your body (buring feet, heart beating, feeling agitated/adrenaline?

I don't take sleep meds, but I don't sleep well all the time either. Yes, sometimes my feet will be burning when I wake up. Sometimes I'll wake up from my heart racing or pounding. Many times I don't know why I wake up, I just do. The agitated feeling is usually a problem for me when I am trying to go to sleep.

- If I don't sleep well I am much worse of the next day. Do most of you find this to be true?

Yes. If I don't get a good 10 hours (or more) of sleep then I am more tired and weak the following day.

- Do most of you still drive?

No, I don't drive at all anymore. I don't trust myself behind the wheel. It is too hard to concentrate. Plus, I can't sit up long enough to get anywhere and back.

- How long did the salt diet take to help? Did you gain weight?

Yes, I gained weight. I don't remember how long it took the salt diet to help originally. But when I'm extra tired or my bp is low, I take an extra dose of salt and rest. I notice some improvement in a few hours. I'm not sure how much of that is from salt and how much is just from rest.

- I can be leveled by headaches and fatigue on those days. Does that sound familiar?

Fatigue will level me. Thankfully, my headaches aren't usually very bad. Ibuprofen takes care of my headaches.

- Generally feel very upbeat about life and have been through muc before but somedays I can get a bit weepy. I feel moody since the salt diet started. Any connection?

I don't know about a connection between a salt diet and moodiness. I get moody and weepy sometimes. Sometimes it is just from mild PMS I think. Otherwise, it usually happens when I am extremely overtired. I say extremely overtired because I am always overtired. But it isn't until I am extremely overtired that I get moody and weepy.

Hope I've been able to hellp.

Feel better,

Rachel

Thanks for the update, Michelle.

Amy, I hope they can identify the bacteria soon and get you on a good antibiotic. I'm praying for your recovery. Rest well.

Hugs,

Rachel

Dear Dawn,

I'm so sorry to read your sad news. I will be thinking of your brother and praying for him (and for you and the other family members). Please keep us updated.

Rachel

Hi Persephone,

I often get blurred vision. Sometimes it is just annoying. And sometimes it will be so extreme that I can't read. It has never been to the point of seeing double, though. The blurry vision will last anywhere from a day to a week. Then everything goes back to "normal." I think it is just one of those crazy POTS symptoms.

Hope it goes away for you soon.

Rachel

P.S. Once I did have blurry vision due to meds, so if you're taking any new medication you might want to check the side effects.

Lavender,

The blood in my legs pools whenever I am sitting or standing. It even pools some when I have compression stockings on. And it often causes my legs to be a bit purple. But I don't have spider veins, nor do my blood vessels leak. And I only have a little swelling. I have heard that after time (many many years of blood pooling) that the blood vessels might start to leak. And my doctor told me that I might get varicose veins in the future, but that no one can really say for sure if the blood pooling causes varicose veins or not.

Anyway, all that to say, I think the doctor was wrong about blood not pooling in your legs. I'd get a second opinion.

Good luck,

Rachel

Hi Tearose,

I don't know of a POTS packing list, but here are a few of my suggestions:

- Pack clothes that can be layered. That way when you get too warm you can easily shed a layer. And if it is chilly, you can add a layer.

- a good book or two for the waiting room/hotel room

- a notebook and pen to keep track of the tests, results, questions, etc.

- whatever snacks and fluids you need

- slippers, your own soap and shampoo, comfy pjs, and whatever else makes the hotel stay more comfortable for you.

I hope your trip to Mayo is successful. May you come backed perfectly "tweaked."

Rachel

I'm so sorry to hear that Amy is sick too. Thanks for letting us know, Michelle.

Hope you get well soon, Amy. I'll be pryaing for you.

Rachel

P.S. Thanks for all of your work with the tshirts!

It is good to read another update. Thank you, Emily. Hope you slept better last night.

Melissa, I'm so glad to hear that you're stable and sounding like yourself again. It sounds like you're going to be there for a little bit longer, so I'll send another card your way. I hope that you continue to recover and grow stronger. I will keep praying for you. Get better soon!

Love,

Rachel

What a great idea to sit on the floor and bake!!! I don't think I could handle that at this point, but I will keep it in mind. Maybe someday... :-)

I know what you mean about it being easier to sit on the floor than a chair. Would a little kids card table work? Those are lightweight and fold up easily. But I'm not sure if that would be low enough. I checked on fredmeyer.com, but I couldn't find one. I did see some on Walmart.com, though. You have to pick through Sponge Bob and Thomas the Tank Engine, but there are some tables that aren't so cutsie. There were actually some nice looking wooden ones too. Maybe you could just cut the legs shorter like other suggested. Here's the link to the walmart page incase you're interested. http://www.walmart.com/catalog/catalog.gsp...;catNavId=92352

Hope you find something that works!

Rachel

Hi Maxine, I'm sorry you've had such a difficult start to 2007. And I'm sorry you're mom has had such difficulty with blood clots. I'm glad to hear she is doing better and back home. How is she doing now? Is she continuing to stay motivated to move around?

Sorry I'm so late to the post...

Hope 2007 gets better for you.

Hugs,

Rachel

It sounds like you've had a very difficult start to the new year. I'm so sorry. I'm thinking of you and praying for you.

How did the most recent trip to the doctor go?

Rachel

I'm late to this post! It takes me a while to get to the chit-chat forum sometimes. I'm sorry to hear that your mother has had such troubles. I'm glad to hear that she is on the mend now, though.

Take care,

Rachel

Sue,

That is wonderful news! I hope that the job goes well. Have fun with it!

Rachel

Thanks for the update, Karen.

We miss you, Melissa. I'm sorry you have to go through all of this. Rest well.

Rachel

Stacey,

My appointments with my EP often included an EKG and/or blood work. They always included orthostatics. The doctor would also feel my neck and tummy, check my heartrate, and get caught up on new symptoms/changes in symptoms. Then we'd come up with a new treatment or continue with the same treatment if it was working (that only happened once!).

Ask lots of questions and give lots of info. Good luck. I hope all goes well.

Rachel

When I was in the process of applying for SSDI and appealing, I had a nurse come over to my house once a week and take orthostatics. It was part of a visiting nurse program that a nearby medical clinic did. If there isn't a nurse that can come to your house, perhaps you could go to a medical center regularly so that they can "officially" track your health. The nurse that came over to my house would check my pulse and bp after lying down for 15 minutes. Then I would stand up and she'd check my pulse and bp every minute or two for a as long as I could remain standing (sometimes 3 minutes, sometimes 10). She also kept track of how I was doing physically and how POTS affected my daily life. All of this was written down in my medical records and was then copied and sent to the judge.

You can also keep a daily or weekly journal of your symptoms, bp, and hr. This probably won't carry as much weight as records that come from a medical center, but it can't hurt to have more evidence.

I think people are usually off all meds when they redo a ttt since they can change your hr and bp. You wouldn't want to have a false negative test.

Best of luck with everything.

Rachel

My doctor prescribed a sleep aid once but I couldn't continue to take it. It had the opposite effect on me and I actually got even less sleep. I can't remember what the med was, though.

Rachel