Rachel

Tearose,

Thank you so much for sharing your experience at Mayo with all of us. That is wonderful to hear that your time there exceeded your expectations!

Congratulations on making it safely through your two weeks of tweeking.

Rachel

Hi Bri,

I'll second what Katherine said. Lots of people with POTS have arrythmias, but they are usually nothing to worry about. The feeling is quite uncomfortable, though. Makes it hard to rest, sleep, or concentrate doesn't it?

Do call a doctor (cardiologist or family practioner - whichever one is willing to help) and ask for a 24 hour holter monitor. It will record all of your heart beats for a day, then the tape is analyzed for anything that might be wrong. You can also ask for the report to be sent to you, and you can then read the diagnosis for yourself. Like Katherine said, it is probably nothing serious, but it will put your mind at ease.

Rachel

Dear Poohbear, I'm thinking of you and praying for you.

Thanks for the updates, Sophia.

Rachel

No, there aren't any updates yet. We are still trying to reach the administrator. He hasn't answered the phone, nor has he returned our phone calls.

If we can't reach him this week, I guess we'll try writing a letter to the doctor.

Dear Sweet Sunfish,

It is so good to have you dropping in and sharing how you're doing and what is going on. I think about you every day. And I'm still praying for you.

I'm glad to hear that you are able to take meds through the tube. What a blessing that they are able to work more effectively now.

Congratulations on the little victories like a seated shower and being able to make it into the real bathroom occassionally.

Thank you for sharing so much in your post. You certainly have our permission to do a long post! Thank you for sharing the reality of what you are facing, no matter how hard it is for people to deal with and talk about. It is the truth and the reality for you and you should feel free to express it here.

You have an amazing perspective. Keep holding on to hope.

Love,

Rachel

Patience is the name of the game!!!

Sorry you have to wait so long. I hope you hear some good news soon.

Rachel

Lauren,

Thanks for the website. It is very informative! It doesn't have all the information I'd like about dysautonomia and birth control, but when do we ever find all the information we need on dysautonomia?!

Em,

Rest up, and don't worry about posting unless you're able.

Tanzanite and Hanna,

Where can one find essential oils?

Jacquie,

Yep, I get super dizzy, weak, etc. if I push it too far physically. Somedays that means I have to lie down all day. Other days I can walk around the house a bit. I've just had to learn to listen to my body and slow down or stop when I feel my symptoms getting worse.

I hope you can find an exercise routine that works for you. Don't give up!

Rachel

Dear sinkinfastMorgan,

I'm so sorry that this is happening to you. It must be devastating, especially after seeing him for 23 years. It is hard to be stuck - needing care, but unable to find it.

You said you've been diagnosed with lots of psych disorders. Have you ever been to a psychologist to get that straightened out?

Climb aboard the DINET lifeboat. We won't let you sink! Hang in there.

Hugs,

Rachel

P.S. Congratulations on 2,000 posts. Sorry it's a bummer one.

P.P.S. Whoops, I guess you posted your reply while I was replying to the original post. I'm sorry about the neurologist "overriding" what the therapist and psyciatrist said. That just isn't right. What a frustrating thing to have to deal with. So very sorry.

Jacquie,

I received my first notice of approval in the form of a letter from the Administrative Law Judge at the Office of Hearings and Appeals. About a month after that my first SSDI payment was deposited into my account (I opted for direct deposit instead of a check in the mail).

You said the hearings office told you that a decision was made on your case. Did they inform you in writing or over the phone?

If an official decision was made then the SSA office should have that information on file.

Hope you can get some definitive answers soon.

Rachel

Lavender,

Thanks for sharing.

Which foods have phytoestrogens in them?

I do feel worse for the week before my period starts. Then I slowly start to feel better during my period. Then I have a "good" two weeks. Usually the crash before my period isn't too bad. But last time it was.

Rachel

Hi Everyone,

I'm looking into starting birth control pills. Not for a contraceptive, but to see if it helps my POTS and NMH. I felt much better while I was pregnant (even before the increase in blood volume). There was a noticable difference in my health just in the first week of pregnancy (when progesterone levels rise), so I'm hoping that the hormones in a bcp will give me a bit of overall improvement.

I'll be going to my pcp early next week and will be able to ask her some questions, but I want to show up prepared. So here are some things I'm trying to get some info on before I go:

Are there any articles about dysautonomia and the benefit of birth control pills? I've searched, but haven't found anything.

Do any of you know about the risk of breast cancer associated with birth control pills? I've found conflicting reports, but would appreciate a more definitive answer.

Will the risk of blood clots be greater for me since I can't walk much?

Is a higher hormone or lower hormone pill better for POTS and NMH?

Do any of you do natural hormones? Like a progesterone cream? Do those work as well for those of us with dysautonomia?

I appreciate any answers, advice, or experiences you can share.

Thanks,

Rachel

I don't have much news to report. We're still trying to get a hold of the administrator. He's the one who sent the letter cancelling my appointment. He is out of the office today, but should be in tomorrow. I was just given his direct number, so it should be easier to reach him now.

One bit of good news, I did find a pcp yesterday. And I have an appointment with her next week. So even if I can't get to a specialist for a while, at least I can get to a pcp who can write prescriptions for other stuff I desperately need (like a new wheelchair, support stockings, etc.). And maybe she'll get a script for birth control for me too. I'm ready to do anything that might help!

Rachel

Funny thing about Simple Green - it is actually the worst cleaner for me to be around! I don't know why. I thought it would be fine since it is non toxic. But it was the first cleaner that I started having a reaction to. I can't breath around the stuff without coughing. Maybe I didn't dilute it enough, I don't know, but I'm afraid to try it again!

It might be okay for most people, but do be careful. If Simple Green does work for you, that's great, because it is a really good cleaner.

Rachel

Hello, Jenn.

It is nice to meet you! I'm glad you found us. I hope you find this to be a helpful and caring place.

Rachel

Maxine,

I'm so sorry that you have to go through all of this. I will be praying for you.

Don't worry about not being able to post much. You are facing a lot right now. Take the time you need to care for yourself and your family.

Thinking of you,

Rachel

Emily,

I usually wear a large in misses sizes and I got a large t-shirt because I thought I'd rather have one a bit too big than a bit to small. But now if I wear it I have to have a shirt layered under it. And it is still a bit too big. Oh well.

I tried to shrink the shirt, but it didn't shrink.

Good luck figuring out your sizes!

Rachel

P.S. Asher would look terriffic in a dysautonomia t-shirt!

Thanks for the updates, Sophia.

Still thinking about you, Pooh.

Rachel

Sophia,

As far as wipes go, baby wipes don't bother me. But they aren't all that disinfectant! I suppose they're better than nothing, though.

For cleaners my husband uses vinegar and rubbing alcohol in a spray bottle. It's about the only thing that doesn't bother my throat and lungs. When necessary he uses a bit of bleach in the bathroom.

Wish I had more suggestions! There just isn't much out there for people that are sensitive to chemicals.

Rachel

Thank you everyone for your kind responses and advice.

At this point our plan is to call the office tomorrow. My husband is going to take care of this for me. I'm just too tired and brainfogged to deal with it properly at this point. It is hard for me to talk on the phone - conversation goes faster than I can think. I like being able to type because I can take my time.

Anyway, my husband will call, speak to the office administrator and see if he can get things straightened out. We will see how that goes and then I will consider writing/faxing the doctor if need be.

Meanwhile, I'm also going to look into some other doctors in my area. Maybe I'll be able to find a better doctor, or a good doctor that also has helpful staff memebers.

I'll let you know how everything turns out tomorrow.

Rachel

Congratulations, Megan!

Thanks for sharing the great news!

Rachel

Em, I did a search and found some info. I'll still need more info, but I'll have to search more another day...it is bed time!

Thanks for the help,

Rachel

Emily,

Thanks for your support.

Yes, I've heard excellent things about the doctors at this office. I've heard from people with POTS who have been very pleased with the care they received there. They've been going there for years. I've also heard good things about the nurses and techniciains. I've never heard anything about the receptionist, though...hmmmm. Maybe good things only start after you get back into the testing and exam rooms!

I might just have to turn everything over to my husband and let him fight this battle. He said he'd call the administrator on Monday (of course this had to happen over a weekend!) and see what he can do to straighten things out.

I'll keep you posted.

Rachel

Hi everyone,

I just want to cry. I got a letter in the mail from the administrator of a doctor's office I am (was) supposed to go to. They cancelled my appointment on me. I'm so upset because I desperately need medical help. One of the reasons I was glad to move out of Alaska was that I would be near good medical facilities again and could get adequate care. But maybe that isn't going to happen.

Here's what's been going on:

Last week I called the doctor's office and left a message for a nurse to call me back. I said that I had some questions about tests.

On Monday of this week a receptionist called me back, only she didn't identify herself as the receptionist. And so I assumed that she was a nurse. She got kinda freaked out that I was in a wheelchair and couldn't understand why I would be. And so I got a little scared that this nurse knew so little about dysautonomia. She told me that I shouldn't go to these doctors that treat dysautonomia, I should go to a cardiologist. Eventually, she said, "Well, maybe you should talk to a nurse?" I was like, "You aren't a nurse?!" She said she'd have a nurse call me back.

So I've been waiting for a nurse to call. But today I got the letter from the administrator saying that my appointment has been cancelled because they cannot accommodate my requests. But he doesn't even know what my requests are! I don't even know what my requests are yet! I was never allowed to speak to a nurse to get more information about the office in order to know what to request.

This decision to cancel my appointment can only be based off of something the receptionist said. A receptionist shouldn't be allowed to give medical advice to me or to the administrator, right?

Have any of you faced something like this before? Do they have the right to cancel my appointment like that?

If you have any advice to offer, I'd like to hear it. I just don't know what to do.

A sad and frustrated Rachel