JennaC

I see a GI motility specialist and it has made a huge impact on helping me feel better. They seem to be knowledgeable about autonomic problems. I was diagnosed with gastoparesis and an esophageal infection earlier this year. With treatment and diet modification I am not nauseous every day.

I went from using an electric scooter to walking and other forms of standing exercise in a similar manner as Katie. After getting treatment for gastroparesis in March I started feeling well enough to walk around the block and I progressed slowly from there. At the gym today I was able to do 20 on an elliptical thingy and 10 minutes of rowing.

I have been running low grade fevers several times a month (99's), but my normal temp is fairly low and even 99 makes me feel horrible. My pcp had me tested for all kinds of stuff just to make sure nothing easily treatable was going on. Does tylenol help bring your fevers down?

I love nuun! I use 2 tablets to 1L of water and use that as 1 of my 3 daily liters.

I agree that scientific data on this type of treatment is needed, but as a scientist myself (toxicology) I have learned that very little money is put in to treatments that companies cannot make huge profits from. On a side notes, I recently read Molecules of Emotion by Candace Pert and my entire outlook on disease and treatment changed. She discovered the opiate receptor and has an amazing story.

From what I remember from the cardiac portion of my pharmacology class... The parasympathetic nervous system needs to be active at a low degree to maintain what we consider normal heart rates. Thank you for sharing your test results. I hope your doctors can suggest better treatment based on the results.

I don't think anyone at Dr. K's office, or Dr. K, referred to their treatment as a cure. Although, they have patients that are living lives comparable to their pre-POTS days. I've come to terms that I will likely not be skating roller derby all over the country like I was 3-5 years ago, but I believe that I will be able to function relatively symptom free with this form of treatment. Maybe this is because there is not apparent underlying cause of my POTS other than a progression of symptoms for the last 10 years.

Before making the decision the go to Dallas for treatment, I spoke with a biofeedback professional in my area. She unfortunately had not seen anyone with POTS symptoms and even agreed that going to someone with experience in that area would be helpful. I feel that the money I spent going there will pay off in less doctors bills (co pays, co-insurance) and prescription drugs.

I recently spent 2 weeks in Dallas and would be happy to answer any specific questions. The 10 day program is great a way to get started on the process. I new going in to it that I would be following a "home plan". I felt well enough to taper off beta blockers and am now starting to do cardio (gentle) at the gym. One of the biggest benefits so far is that many of the huge heart rate spikes upon standing are gone thanks to the breathing. I would like to get a nice heart rate monitor and track it during the day to see my progress.

I always take doctor's notes lightly... According to one doctor, I am likely a former heroin addict because I admitted to experimenting with drugs. I would definitely go through with the testing, but understand that we are very difficult for doctors to grasp. They are trained to find a diagnosis based on testing and symptoms, and unfortunately we are outside the scope of knowledge for most trained medical professionals.

Have you tried yoga? I've been doing gentle yoga for about a year with positive results and just started recumbent exercises (recumbent bike and swimming). I am trying to keep my heart rate low (<130) and will hopefully work up to upright exercise like a bike or elliptical.

Hey everyone! I just got back from 2 weeks in Dallas with Dr. Kyprianou and I am feeling a lot better. I've spent the last 6-9 months trying to improve on my own. I managed to wean off of using my electric scooter and do some basic yoga in that time, but I was still having major episodes and lots of symptoms. I got back to NC on Friday and have been able to start recumbent exercise. Also, I am now off of propranolol, muscle relaxers and nausea meds. Let me know if you have any specific questions!

Kelli, I knew to run when he didn't seem concerned that my heart rate goes to 200 within 8 minutes of a stress test. Until earlier this year I was playing a national level sport... I'm so glad someone finally put me on a beta blocker! 10mg of propranolol helps so much... Wish they would have tried that 8 months ago during me first stress test! Jenna

I was first diagnosed by an EP, but I'm not very fond of him. He gave me 0.05mg of florinef and said to follow up with him in 4-6 weeks. Since then (November) I've seen a neurologist and will also be consulting with an ANS specialist and a rheumatologist. I'm going to stick with the neurologist for now, as seems the most up to date on POTS. -Jenna

beggiatoa, What kind of symptoms prompted that test? My neurologist mentioned it, but want to hold off since I've been through a ton of testing lately! I have horrible leg pain that doesn't seem to be nerve related in the classical sense. It's mainly in my shins and ankles and moves into my quads/knees if I stand or walk too much! She's having me consult with orthopedics and a rheumatologist soon. Does anyone else have pain like this? Thanks, Jenna

Maisie, I just wanted to say that I can relate to your questions! I've been through endless testing for the last 11 months, just getting a diagnosis of POTS very recently. Over the summer they were concerned I had pulmonary hypertension and I freaked out because I really want to have children someday. Reading this forum gives me hope! I'm 25 and trying to stay in my graduate program right now, so babies will be on hold for a while. hugs, Jenna

Elfie, I'm 25 and a graduate student away from family, so I can definitely relate to some of your concerns. One thing that really saved my butt is the spiritual group I belong to. I don't know how I would cope without rides, people to cook for me and help with my dog. I'm terrible at asking for help, but have have found that sometimes even acquaintances from class are more than happy to lend a hand. Another thing that I've discovered is student disability services at my school. By registering with them I can get rides around campus, note takers, lecture recording services, etc... My school is only 3 hours from my Mom, and I am very grateful she's not any farther away. I ran away from home at 15 and it's been a rocky relationship over the past 10 years, but in times of sickness family really is needed. The next right action usually is very apparent for me. I'm sure you will find the right path toward furthering your education and taking care of your health. hugs, Jenna

firewatcher, I am taking allegra and used to take allegraD, but the sudafed makes me a little too tachy. My dose just got lowered because I keep developing a hard swollen area a couple inches in diameter around the injection site. The cardiologist who diagnosed me just prescribed .05mg florinef. --Jenna

Hey everyone! Thanks for being here to help. I've been reading article and search the forums, but I still have questions. 1. What is considered an exaggerated response to isoproterenol? My hr went from 100 to 130+ during the tilt and after 20 minutes I was given isoproterenol where my hr jumped to 160. I never passed out, but I definitely felt horrible and my hands turned purple! 2. Does anyone get allergy shots? Do your symptoms increase on those days. I'm also starting to have reactions at the injection site. We've already backed down on my maintenance dose a couple times. --Jenna

My guess is those two drugs would help raise you blood pressure. I'm new and was just prescribed florinef. Sudafed products seem to make me more tachy, and my blood pressure doesn't fall too much when I stand.

Jen, I'm not sure about caregivers and financial aid. I had lots of problems when my father was very ill with regards to staying in my courses and dealing with financial aid. I think I ended up getting paid to be his caregiver somehow??? Are you on disability? One trick I would do for financial aid, was to add a PE class, or a super easy online course to keep enough credits and high enough GPA. --Jenna

I have had an extensive pulmonary work up since I thought I had asthma when my symptoms started. My O2 sats drop with a sharp increase in hr. We did an informal jog up a few flights of stairs when I first got a prescription for O2. Without O2 I went down to 82% O2 and a hr of 160 something. With O2 my sats only dropped to 94% and I thing my hr only went up to 140. They did a test giving me 100% O2 for 20 minutes with an ABG and my lungs are able to fully oxygenate my blood. They did all this to rule out shunts...

The nurse in the pulmonology clinic comment on how much better I looked when I came back with the oxygen. I don't use it all the time, but it really helps when I need to be at school or in the lab all day. For instance, I'll use it a 2l/min while walking to the bus stop and through campus. If I have an experiment going on I will also use it during the prep when I'm standing and moving around. I'm also starting to wear compression sock thanks to all the info on this site! Hopefully I will make it through my PhD program. I freaked out a little yesterday when my boss chewed me out. I was convinced I'd be kicked out of school and end up broke with no health insurance. In reality, even with my symptoms now, I could probably last another year or 2 and I'd still be awarded a masters degree for my efforts. I also have the option to take up to 1 year medical leave...

Thanks for all the replies! They've measured O2 saturation with the little finger probe and are doing an ABG stress test in a week. Back in April they tried to do pre and post exercise ABG draws, but I passed out, so now there are going to just put an arterial line in before the test. I'm so sick of being tested on, but at least now I'm getting some answers and possible treatments. Anyone have any good tips for heartburn/acid reflux? I woke up in so much pain last night!

My pcp put me on nortriptyline for pain about a month ago to try and lower the amount of vicodin I'm taking for leg pain and sleep issues. We upped my dose last week and I've been having horrible heartburn. I also started florinef and high salt diet last week, so I can't really tell what the cause is. I'm not liking this at all!