Rachel

Do you find that when you're in your wheelchair people don't talk to you? Or they don't talk to you for very long? What helps to make people not quite so afraid of wheelchairs? I've thought that being more "bubbly and outgoing" might help, but I'm just too tired to do that! Rachel

Amy, I'm thinking about you, praying for you, and sending a hug your way.

Congratulations!!! Babies are a gift. Hope all goes well. Rachel

The way I understand, caffeine is water soluable. So coffee is decaffeinated by soaking the beans in hot water. However, this process does not get out all of the caffeine. A very tiny bit remainss. I read an article about this process in National Geographic a year or so ago (Jan 2005?). Also, I found this link on the web that explains the decaffeination process. http://home.howstuffworks.com/question480.htm Hopefully this will answer your question, Emily. Also, note that when coffee is decaffeinated this increases the acidity in the coffee, which can be hard on some people's stomachs. As a pot of coffee is brewing the first of the coffee to drip into the pot will have more caffeine. The last of the coffee to drip in will have less caffeine, but more acidity. Rachel

Thanks everyone. I'll start looking into these doctors and see if any of them are taking new patients. Also, does anyone have a primary care physician they can recommend? Preferably female. I don't like going to visit a doctor if I haven't heard anything about them. I've had to do that before and it turned out terrible! Thanks for all your help. Rachel

Congratulations! We're all here cheering for you! Rachel

Hi everyone, I've recently moved to Georgia (guess I need to change my signature!). Does anyone have any suggestions for doctors in this area? I'll take suggestions for pcp, cardiologists, neurologists, POTS specialists, etc. If you have a recommendation you can send it to me in a personal message. Doctors in the Atlanta area would be preferable, but I'm willing to go anywhere in the southeast. After driving 6,000 miles from Alaska to Georgia, a 500 mile drive to see a doctor is nothing. Thanks for any help you can give. Rachel

Thanks for letting us know, Megan. Caitlin will me missed and remembered by many. My thoughts and prayers are with her family. Rachel

My health is worse in the summer months. I don't tolerate heat well at all, which is why Alaska was such a great place to live! Unfortunately we've had to move to the south. I'm not looking forward to summer. Anything over 70 degrees is difficult for me. I do best with temperatures of 60-68, or even colder. Bring on 50 below! Rachel

I've had POTS for 12+ years. It took 2 years or so to get a diagnosis. Mine has an auto-immune cause. A study at Johns Hopkins found that there is an antibody in my blood to m2 muscarinic receptors. I'm not sure if that is rare or not. I've never found anyone else with the same problem. But also, I don't think those tests are done often. I've tracked down my records from Johns Hopkins, but unfortunately they don't include the study that was done. So I only have the few details that were in a letter to my other doctor. My symptoms have gotten worse, better, worse, better, worse again, and now much much worse. Rachel

Amy, I'm so sorry you're going through all of that. I'll second what Nina said - the doctor is not caring for you adequately or properly. You might want to start looking for a new doctor. About the SSDI - it's a long hard battle for those of us with POTS. But many have been approved. If you are unable to work due to disability from POTS, I'd recommend getting a lawyer and proceeding with the appeal. Good luck with everything and hang in there. Rachel

Hi Julie, This sounds crazy, but a cup of coffee on an empty/mostly empty stomach always fixes me in about 15-30 minutes. Sometimes just a half a cup of coffee is all I need. I've never heard of anyone else using coffee as a laxative, but it certainly works for me! Rachel

Strangely enough, my body tolerates caffeine just fine. It doesn't raise my heartrate, nor does it keep me awkake. Rachel

Hi, I have looked over the Hallelujah Diet. Although many of the foods in the diet are healthy and good for us, it is not necessarily the best way to eat. I also think that it is appalling that they use the Bible as a marketing ploy to support this diet. They are assuming that those who read the Bible lack intelligence. They also assume we will fall for their line that the diet is "Biblically based." There are a few things I like about the diet and some things that I don't. Things I do like: - It includes fruits, vegetables, and whole grains. - They encourage you to drink lots of water! - They say you are supposed to cut down on sugar and preservatives (but I don't think you should have to cut them completely out). Things I don't like: - According to the diet you aren't supposed to eat meat or fish. - They say to cut down on salt. - They say to avoid wine. - They say to avoid all dairy. - They want you to buy specific products of theirs. The Hallelujah Diet is not based on the Bible. The Bible does not prescribe a specific diet, nor does it say that one will heal you of disease. I do have a bachelors degree in Biblical Studies and I am willing to discuss any of this further. However, I don't want to get in a discussion about all of this on a forum meant for dysautonomia discussions. But if anyone has any questions, please send me a personal message. I'd be glad to help in any way I can. Rachel

Dear Jaime, I'm so sorry that doctor put you through all of that. He was wrong to do so. POTS is very real, even in those who are young. I can't think clearly enough to give advice, but it looks like you've already gotten some good advice. Thanks for sharing your story with us. We care about you. Hang in there and let us know how everything turns out. Rachel

Happy Birthday, Jessica! :-) Hope all is well in your corner of the world. Rachel

Hi, I tried the Crest paint on kind once, but didn't like those. It's hard to paint on, plus your teeth have to be completely dry before you can paint them. And then the stuff came off in my mouth in the night - gross! Next time I will be doing the Crest Whitestrips. No more painting! Good luck! Rachel

Wish I had some good advice to offer! I've never found much to help the severe dizziness and nausea. Sometimes I just have to lie down and wait for it to go away. I used to get nauseated every night for a couple of hours - like morning sickness, only I wasn't pregnant. It goes in cycles. And the dizziness can hit anytime. Sometimes I'll wake up in the middle of the night and feel like I'm on a boat. Sometimes peppermint tea helps to settle my stomach. And if I lie on my side I feel less dizzy then if I'm on my back. Most of all, someone in the house to assist me when I'm dizzy helps. Good luck, Rachel

Hi Lisa, I was approved for SSD a year ago (one year after I applied). I got pregnant during the appeal process and it hasn't affected anything. I asked the Social Security people if I needed to change anything and they said to just let them know when the baby was born and they'd see if he could get benefits. If you have enough work credits you can actually get benefits for your child too! Unfortunately, I didn't. :-( There is a 2 year waiting period for Medicare, though, so I don't have that insurance yet. I don't know if it covers pregnancy, labor, and delivery or not. But definitely look into state Medicaid. Many states cover pregnant moms and their babys 100% if you meet certain income guidelines. Hope this helps. Good luck with everything. Rachel

Hi, I tried Mestinon for a couple of weeks. It helped me feel better at first (more strength and energy), but after 3 days the medicine had built up in my system and the side effects got to me and I couldn't walk at all because I was so weak. I'd like to try it again, but in a smaller dose. My neuro told me that there is a liquid Mestinon that would enable us to do a much smaller dose than we can do with the pills. And someday when I have insurance again I'm going to give it a try. Mestinon is one of the very few drugs that has helped me even a tiny bit. Rachel

Hi, I can't stand to have my bp checked. But if I'm sitting on a "good" day with compressiong stockings on my bp is 120/70. On a bad day it can be 80/50 even if I'm lying down. Most days it is somewhere between the two.

I cannot work. I haven't been able to for 2 years. Before that I worked part time for one year. But now I can't leave the house without my husband to assist me.

Hi Lisa, You've had some good replies, so I don't want to repeat the advice given. Mainly I just want to encourage you to keep working at it and don't give up! I was given the run around by SS also - misled, lied to, etc. But persevering paid off. I would suggest getting a lawyer to help even with the application process. There are attorneys that specialize in Social Security claims. They know the ropes and the loopholes and can make the process simpler for you. And it seems to be that your odds are greater if you have an attorney. I didn't get an attorney from the beginning, but I wish I had. It would have made things easier with the initial application process. I did get one for my appeal and was approved. I'm not sure if I had a great attorney, or a good judge, or if the Lord was just working on my behalf! Also, it is best if you DO tell about all of your assets. If you don't tell the truth on your application you could be denied benefits. Good luck! Rachel

Thanks everyone. I've been pushing salt. I've got lots of Gatorade. And some 30-40 support stockings to wear for the flight. Hopefully all will go better this time! Also, this seems to be a much emptier flight, so it is likely that I might even get to have a whole row to myself to lie down on for the flight! We are flying out tomorrow - I'm looking forward to going home! Rachel

I have another question that I forgot to ask earlier. Did any of you have any medications with your labor and delivery? Pain meds, epidural, iv, etc? Just wondering if/how those things might effect POTS. A midwife told me that an epidural can lower your bp. And considering mine is already too low, I was thinking that an epidural probably would not be a good idea! It seems from my study that all natural is the best way to go with POTS, but I was just wondering what your experiences might have been one way or the other.