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.

I am wondering if i was a combo of the cleaning fumes and the bending over that caused it...

<{POST_SNAPBACK}>

It very likely could be the cleaning fumes and the bending over that caused your symptoms. Cleaning agents always cause a flare up for me, and many times bending over does too. If I clean (usually my husband has to) I try to sit and reach, rather than bend over. Also, I have found that all natural cleaners help a LOT. I use a multi purpose cleaner called "Bio-Kleen." It can be found near the health food section of a grocery store. It has never caused any problems for me as far as POTS flare ups go. The only problem is that it doesn't clean "on it's own" like many of the chemical cleaners do, so you have to scrub harder, which is exausting. But for just wiping stuff down it works great. Good luck!

Rachel

Thanks!

I don't know if it is a boy or girl yet. I'll be having an ultrasound next week, so hopefully I can find out!

Rachel

Several months ago I asked about miscarriages, POTS, etc. and shared that I had had several miscarriages myself and had never been able to have a baby. Well, I finally have good news - I am pregnant and have actually made it to my 6th month! I am due in November and am so excited!

The pregnancy has been going well. I feel better than I did before I got pregnant - even in the first trimester whem many women have morning sickness. So the pregnancy seems to be going well. Is there anything I need to be aware of that is POTS related during labor, delivery and postpartum recovery? I've tried many times to get into the old posts on this topic, but haven't been able to get them to open for me. I would just like to be as informed as possible and know what labor and delivery and recovery is like for other POTSies. Any information you can give is greatly appreciated.

Thanks,

Rachel

Hi all,

Though I haven't been able to make it on the internet much in the past few months I still check in here occasionally and see how everyone is doing. We finally have internet at my house so hopefully it will be easier for me to get on here regularly.

I am actually outside right now (outside Alaska) with my husband to visit family. We will be flying back later on this week. Does anyone have tips for how to survive the flight? Flying back to Alaska means many hours in a plane. Surviving the flight here was a nightmare. I ended up laying on the floor at my husbands feet during the flight - very uncomfortable! And it didn't make the flight attendant too happy that I wasn't sitting in my seat with my seatbelt on. I had requested bulkhead several times, but was always denied. Even though I came in a wheelchiar I still look fairly "normal." How do you explain to a flight attendant that you really can't sit up for 6 hours straight?!!!

I have compressing stockings and will be wearing them on the flight home. We're also going to keep talking to airline people and especially the flight attendants until one listens to us and will let me sit in bulkhead. Then I'll at least be able to stretch my legs out a bit and maybe even prop them up. Any more suggestions that may make the flight a bit easier for me? I appreciate your help!

Rachel

Dino,

I'm sorry your dysautonomia and asthma are so bad. And I'm sorry you're having difficulty with your doctors. I hope that you will be able to speak to them soon and find out some answers.

I have never tried Xolair. I was on asthma medications several years ago, but they never helped much, so I've gone off. I tried Proventil, Intal, and two other inhalers that I can't remember right now. I never noticed them making my dysautonomia sypmtoms worse. But they didn't prevent my asthma either. Another thing I tried for a time was Lobelia, an herb that was recommended to my by my swim coach who also had asthma. It came in liquid form and tasted terrible, but if a few drops are put into a glass of orange juice you don't notice it. Perhaps an herb would be less likely to interfere with your dysautonomia.

Good luck,

Rachel