Rachel

This happens to me when I am really tired. I will breathe out and then just not breathe back in. I don't even realize it for a couple of seconds until my brain kicks in and reminds me to breathe.

My resting heart rate is usually in the 50s. It's funny because 17 years ago my resting heart rate was never below 100; it was usually 120. That was back when I was still a year-round swimmer and was in excellent physical condition (according to any test on my heart and lungs). Now as my health has declined over the years my heart rate has gone down as well.

I'm so sorry that you're going to be without internet. We'll miss you. I hope that you will get the help and treatment that you need. You'll be in my thoughts! Please check in as you're able.

Rachel

Ugh. You can talk with someone in the office to see if they can offer you a discount. Some places will do this for patients who don't have insurance. I don't know if they will do it for someone who has insurance but is out of network. It can't hurt to ask. You can also check to see if they offer any financial aid programs. If not that, you can ask about working out a payment plan so that you don't have to pay the whole $2000 at once.

Agreed! This is such a valuable place.

I first found DINET in 2004, and it was a lifesaver for me! At that point in time I had already had POTS for 10 years, but it suddenly became very severe. At that time I was living in the middle of nowhere in Alaska and didn't know what to do. The information on the website and the support on the forum was so valuable. It has continued to be a help for me over the years, and I have made some very close friends through DINET.

I like DINET so much, and that is why I volunteer here. This forum and website is a valuable resource, and I want to see it continue on for a long, long time. Thank you to everyone who participates here and helps to make DINET such a great place!

Rachel

I'm so glad to hear that you are doing a little better and that your florinef dose was lowered. I prayed for you a lot last night and today! I hope that you'll be able to get into Vanderbilt soon and get the answers and help that you need. Please keep us posted.

Rachel

I'm so sorry about what you are going through right now. I will be praying for you tonight.

I'm not a doctor, but I would be very concerned about taking 0.6mg of florinef. From what I understand 0.2 is the max dose. http://www.rxlist.com/florinef-drug/indications-dosage.htm

I hope you'll be feeling better soon.

Hugs,

Rachel

We do want to keep all dysautonomia discussions in one forum. This is something that is fairly unique to DINET, and I believe it is beneficial. When too many sub-forums are added it becomes cumbersome to keep switching between forums, especially for moderators who read every topic every day.

The best way to organize research articles on the forum would be to begin using the tag feature on topics. If everyone who posts a research article puts a tag under the post that says, "research article," then they can all be brought up together. You can click on a tag underneath a topic, and it will bring up a list of all topics that have been tagged with that word or phrase. This is a new feature in the upgraded forum, and it could be really helpful if we all use it.

There are a few places where DINET does have research articles gathered. There is a research page on DINET, found here: http://www.dinet.org/research.htm It hasn't been maintained in the past two years because of lack of volunteers, but we hope to get that back up and running soon. A few relevant research articles are published quarterly in the newsletter, and you can find those here: http://www.dinet.org/newsletter.htm

Personally, I find it helpful to save research articles that interest me into a dysautonomia folder on my computer. I also sometimes save links in an internet folder. I even started a dysautonomia pinboard on Pinterest to collect articles and pictures relevant to dysautonomia (some fun, some serious).

I'm sorry we can't add another forum here, but we appreciate your feedback.

Rachel

When I have a long car trip I usually sit in the front, recline my chair, and put my feet up on the dashboard. It isn't a very safe way to ride, but it's the only way I can go anywhere in the car, even around town. I can't sit for more than 10 or 15 minutes with my feet down on the floor. If I am feeling particularly bad I lie down on the back bench in the van.

Wearing compression and drinking fluids helps. I also bring along pillows and a blanket to make sure that I am as comfortable as possible. We also avoid winding roads and stay on the interstate as much as possible. If there are a lot of turns or curves then I get exhausted from holding myself in my chair. I never knew in my healthier days just how much core muscle strength it took to sit in a car as it took curves. It is exhausting now and leaves me weak and shaky. If you are the same way then you might want to plan a route that will avoid as many curves as possible.

Long car trips are hard, but they can be really fun. It's great to see the sights along the way (even when it is only out of your window), and it is fun to see family at the end of your destination.

Rachel

I'm glad that you are doing better now than in your first trimester. Reaching the 12 week mark can really make a difference sometimes. I hope that the rest of your pregnancy goes well and that you and the baby both stay as healthy as possible.

Rachel

Hi Potsgirl,

Having POTS can definitely be uncomfortable and feel really bad, but it in and of itself it isn't life threatening. It just feels awful.

The girl you saw on the video probably had much more than POTS going on. I don't know the details of her health, but she might have had pretty bad gastroparesis. If gastroparesis becomes severe a patient may have to be on tpn or tube feedings. It's a necessary treatment for them, but they run the risk of complications and infections, some of which can become very serious. That's not something a typical POTS patient has to deal with. And even then, POTS isn't the problem. Gastroparesis and complications are.

I know it's hard to understand when you feel your heart racing, feel faint, nauseated, etc. It's miserable and can be scary. I remember my doctor telling me when I was first diagnosed, "This isn't life threatening. You may feel like you're going to die, but you won't."

So hang in there. We're here for you and we understand what it's like.

Rachel

To share a picture you need to upload it to a photo sharing site (like Flickr or PhotoBucket). You can then link directly to the photo's URL. That will embed the picture within your post for us to see.

You can also link to the page where your picture can be found, and members can click over to see your photo.

Hope this helps!

Rachel

I have been taking both Alpha-Lipoic Acid and Acetyl L-Carnitine for close to a year now I think. They have both been helpful, but by no means even close to a cure for me.

They haven't had an effect on presyncope, syncope, or dizziness. They have helped some with brain fog. They don't help as much as Cerefolin NAC, but they have helped.

The other thing they have helped with is energy levels. I'm able to do a little bit more when I take them and I don't feel as awful. I still feel awful, just not as awful. I'm still home-bound unless someone can take me out, and I still have to be in bed 18 hours a day. So definitely not a cure for me.

Technically I do still have a diagnosis of POTS, but that doesn't really describe me well anymore. Over the years my symptoms have progressed, and my doctors now believe I have a mitochondrial disease. It was for this reason that I was prescribed Alpha-Lipoic Acid and Acetyl L-Carnitine.

Dr. Raj said in the article that he is currently working on research to determine the reason for the low blood volume that many of us have. I hope he finds some answers. I'll have to keep my eye out for more information regarding that in the coming months and years.

Yogini, I found it interesting, too, that the patient they interviewed who had followed Dr. Levine's protocol didn't benefit from it at all. In fact, it made her much worse.

I do agree with the doctors that exercise is important. My doctors have been telling me ever since 1995 when I was diagnosed that exercise is important. I feel better when I move around as much as I can every day. But I have also found that if I over-do it too many times then I get worse in the long run.

There was an article this week in the Pittsburgh Post-Gazette about POTS:

It includes quotes from several dysautonomia doctors. It doesn't go into how severe POTS can be for some of us, but neither does it say that we all get better like we've seen written sometimes.

It is good to see another article spreading awareness!

We just need to live in swimming pools or anti-gravity stations.

Medicaid programs vary from state to state, but I think it is pretty likely that you could get help like this. You'll need to check with your state Medicaid and possibly apply for a medicaid waiver if you qualify. Your doctor may also know the answer to this since he probably regularly deals with medicaid patients.

Rachel

I'm pretty sure that "google" just means that the google search engine is here. Occasionally you'll see yahoo too. "Guests" are individuals who haven't registered (or haven't logged in), but are reading on the forum.

Thank you so much for sharing all of this! That is really interesting, and I appreciate the detailed information. I hope that this treatment helps you. Please keep us updated!

Rachel

Thanks for sharing. It's good to see a study that concludes we aren't just ill from deconditioning.

I had big babies too. 9lbs 8oz for my son who was born at 41 weeks. My daughter was born at 39 weeks, and she was 10lbs 1oz.

LindaJoy, I'm sorry your account is giving you trouble. Send me a PM or an email at dinetforums(at)gmail(dot)com and I can help you get it fixed.

I do get lines on my fingers occasionally, but they aren't as deep as the ones I have seen in pictures of Beaus lines. I'll have to start paying attention to see if it corresponds with times when my blood pressure stays low.

Rachel

It's interesting how many of us were so athletic before becoming so ill. I was a year-round competitive swimmer when I first started noticing symptoms of POTS. I swam 3 miles a day, 5 days a week. I also did weight lifting for 2 hours a week. Beyond that, I did ice skating once or twice a week. I also did about 10 hours of babysitting a week, and I was one of those active babysitters - running around, playing games, cooking supper, giving baths. I was busy!

Eventually I had to quit swimming, but I continued with ice skating (about 2 hours twice a week) and babysitting for the last 3 years of high school. My health even improved enough that I was able to be a camp counselor for 5 summers (end of high school and first years of college). It was hard, and each summer was successively harder on me physically. I'm so glad I pushed it, though. I'm mostly homebound now, and I'm so thankful that I took advantage of my healthier years.

I enjoy reading, crocheting, and blogging. When I am too tired to move I like to watch shows on hulu or tv. I like to play with my children as much as I can - usually while in my recliner or lying down on the floor. Though they are becoming much more rare, I enjoy going for outings in my wheelchair when I can. It is nice to get out of the apartment every once in a while.

Paona just posted this article in another topic, and I wanted to post it here too in case you didn't see it. Anesthetic Consideration In A Patient With Postural Orthostatic Tachycardia Syndrome http://www.ispub.com...a-syndrome.html

If you don't get many replies here, you may find some of the posts in Paona's current topic helpful. http://forums.dinet....191#entry175191

You might also find some more information by doing a search. I know that surgery has been discussed many times here before.