ACB

Naomi, I feel this way exactly. I was just diagnosed at the end of January and have been doing overwhelming amounts of reading about anything that seems relevant to POTS since November or December, when I suspected that's what I had. My husband often has to remind me to take it easy on the research, because I get compulsive about it (like I'm gonna solve my problem in several hours on my laptop!). I just tried fludrocortisone as my first med last month and saw no results. I've been salt and water loading, wearing compression hose, and sleeping with the head of the bed elevated for a little over two months now and have seen no improvements. Last week, I requested an appt at Mayo in MN. I'm hopeful that testing can reveal information about where the problems may lie. It's just so frustrating not knowing. At the same time, I've read plenty of stories of people who've been to Mayo and are stuck in the same treatment situation - trial and error with the commonly prescribed drugs - so, I'm not expecting life changing results. At times, I have 'aha' moments when I learn a new bit of info that helps me understand POTS. But, there's always the problem of POTS being a syndrome - a collection of symptoms. The way I'm thinking about it these days is that, due to POTS being a syndrome, everyone's experience is bound to be different. That's one of the reasons I decided to go ahead with Mayo - testing my own body, rather than extrapolating from participants in research, should yield the most valuable data (for me). This seems really rambling to me. The brain fog is heavy right now. Ugh.

Cordelia, Thank you so much for sharing your experiences at Mayo. I just submitted a Mayo appointment request online today and look forward to hopefully getting some answers and a good treatment plan when I get there. I look forward to hearing more about your visit there as you wrap up - and to hearing all that you care to share about the reconditioning exercises they recommend! Best wishes with the rest of your visit, Alison

Thank you so much for your response! Good to know that they have a range of testing options available. Because of the small heart/hypovolemia finding in his exercise article, I had been wondering if treatment might be focused in these areas to the exclusion of other possible causes. Thanks for confirming that. I should be receiving the exercise protocol any day now through my local PCP. I'm eager to start it and am hopeful for results. However, I'm making plans in the event that it doesn't help. At this point (thanks in large part to your response), if the exercise doesn't help, I'm thinking that it might make more sense for me to go to Mayo for extensive testing rather than Levine's. Some of the symptoms I'm having (e.g., paresthesia, itchy rash) don't seem to be explained by small heart/hypovolemia or even ANS problems. I'm sorry to hear that Levine's treatment plan did not work for you. Did you fit his small heart/hypovolemia criteria? Or, do you have different/additional problems? I've been doing recumbent biking every other evening and leg lifts/crunches on off evenings for about 1 1/2 months. I've seen no improvement, but also don't know if I'm working at an appropriate capacity to make changes. Thank you, again, very much for your input! BTW, I noticed that you worked as a pharmacist pre-POTS. My younger sister is currently in pharmacy school.

So, I just got back from my new cardiologist follow-up appointment. For the past three weeks, I tried a low dose of fludrocortisone (0.05mg/day). (We settled on a low dose because I'm breastfeeding.) I didn't see any positive results, so I'm now off that. Before trying new meds, I'd like to see if Dr Levine's exercise protocol will work for me - I *should* have the protocol to start any day now. If it doesn't help, then I've decided to wean my son (he's two years old and I have been planning to let him self-wean) and start "doing drugs." The thing is, I sure would like to have a better idea of what might be causing my POTS symptoms so that we can have a clearer plan for meds to try. Right now, I am on the waiting list for an appt with Dr. Levine in Dallas. I set that up soon after I was diagnosed with POTS in late January. What I'm wondering now, though, is what sort of autonomic nervous system testing facilities he has available. I mean, can he do everything Mayo in MN or Vanderbilt can do? If anyone knows, I sure would love your input. BTW, I would just call Levine's office, but I've had horrible luck with getting answers and calls back so far. And, the website just says they have "state of the art" testing facilities.

Bwahahaha. What an amazingly helpful doctor! I'm glad you got some results from your blood tests and are making some changes that will hopefully help you. Good luck with the wheat elimination!

My husband got a good laugh about your idea about procuring his services. I'm sure he would serve other POTS patients quite well in that role. I hear ya about feeling anxious about being called anxious! I started to feel that way when seeing new docs while searching for a diagnosis.

I'm so glad I gave you a good laugh! From reading the forum for several months while searching for a diagnosis, I knew that I should expect anxiety diagnoses from docs. It was helpful to know I wasn't alone in fighting them and pushing for an accurate dx. Nice that you got an apology from your cardio about misdiagnoses from other docs! It is no surprise to me that POTS is often misdiagnosed as anxiety by MDs. In my case, it seemed to be a three part problem. 1)My docs exhausted their knowledge and testing abilities to try to determine a cause. 2) They did not search outside the realm of their current knowledge (i.e., they didn't try to learn more). 3) They did not do a proper anxiety assessment. A person should never be given a dx without proper assessment. If I'd been given a brief self-report questionnaire, anxiety could've been quickly ruled out. I don't have the cognitive component required for an anxiety dx. This appears to be the case in many POTS pts - we have physical sx that are related to nervous system problems, but no cognitive sx. I do know some about neurotransmitters (brain chemicals) and how they affect physical functioning. I must admit, though, that POTS brain now rules my world and I have difficulty remembering and articulating my knowledge. I'd be more than happy to try to answer questions or at least point you in the right direction to find info about questions you might have!

Thank you for the warm welcome to the forum! Thanks, too, for the info on hypocalcemia. I read a bit about it and will certainly keep it in mind. I need to review my labs to see if my calcium has been monitored. I saw that petechia can be a symptom of hypocalcemia. I've wondered if the red bumps I have from time to time could be petechia. That's something I need to show my new cardiologist. Maybe they'll reappear in time for my upcoming visit!

Dizzysillyak, Glad I could bring a little laughter to some peeps with my story of my husband's advocacy! It felt so good to have him and his expertise there to back me up. Thank you for warmly welcoming me to the message board! "While I'm no expert on POTS, I did notice that you have an itchy rash. Have you been tested for celiac disease ? This can present as an itchy rash. It's called dermatitis herpeformus (sp?) ... Honestly, I've been calling it DH for so long I can't remember how to spell it." Thanks, too, for your input on the possible cause of my rash! I looked up DH and I don't think that's it. My rash doesn't tend to have fluid filled bumps. It is more just like raised goose bumps that turn bright red at times and itch badly at times. No fluid, though. Hmmm. I was wondering about mast cells, but don't know much about them yet. "I'm 55 and based on the fact that I feel so much better gluten free, I'm assuming that I've had problems with gluten for most of my life. I started having blackouts at 2 years old and had a lifetime of petite mals. It wasn't until I was 34 that I became totally disabled with CFS/ME ... CFS is close if not the same as POTS ..." I saw in your signature that you have been eating paleo for several months. I have recently become very interested in this approach to eating and have been learning lots about it. Awesome to hear that you've experienced improvements since eating this way!

Hello, everyone! My name is Alison. I'm 33 years old, married, and have a two year old son. I have a master's degree in psychology (clinical) and have been a stay-at-home mom since my son was born. I was diagnosed with POTS after I had a TTT performed at the end of January of this year. I've had increasing symptoms of POTS since age 3 or 4, when I developed sporadic chest pain. Then, in high school, the painfully cold (and very sweaty in the past, as well) feet and cold intolerance started. Then, about 8-9 years ago, during grad school, I began having periods of fatigue, cognitive difficulty, and irritability (due to trying to push through the fatigue). Until June of last year, I'd been experiencing all these symptoms off and on, but was still generally functional. Then, in June, I had a rapid onset of new symptoms (i.e., dyspnea, increased fatigue, palpitations, chest fullness, nausea, dizziness, near syncope). After this onset, I began exhaustive cardiac testing, followed by endocrinology testing, at my insistence (of course my PCP gave me an anxiety dx and washed his hands of me - so I found a new one). All testing showed nothing abnormal other than vitamin D deficiency and most docs told me to just take it easy. In January of this year, my sx again increased in frequency and severity. My fatigue became so severe that we've hired full time help while my husband is at work, because I'm no longer able to care for our son. My new PCP also wanted to dx me with an anxiety disorder, so at my follow up appt in January, I brought along my husband, who has a PhD in clinical psych and is a specialist in researching, diagnosing, and treating anxiety disorders. Finally, my new PCP listened when my husband backed up my explanations of why my sx didn't meet criteria for anxiety! At that time, the TTT was scheduled. The day of the TTT, the cardiologist who glanced at my results reassured me I would not need a pacemaker for my fainting. Wow. Thanks for that irrelevant information. I had repeatedly told everyone there that I was referred, not for fainting as they all assumed, but for POTS. No one listened or read my chart. When I explained to him that I was there for POTS testing, he said, "Well, it definitely could be POTS." (Sorry for the mini-rant about one of the many, many errors I have encountered during all of this!) Because I had already been lurking on DINET and reading all I could find about POTS, as soon as I got home from the TTT I started salt and water loading. I elevated the head of the bed, bought a recumbent bike and started riding it and doing leg lifts and crunches, and got compression hose. Then, I began the process of getting a referral to Dr. Levine in Dallas through my PCP. That appointment should happen in 3-4 months. I also started the process to enroll in his exercise study. I should have the protocol by next Friday. In the meantime, I started seeing a new cardiologist who has some basic knowledge about POTS. Our first appt was 3 weeks ago. He prescribed fludrocortisone, 0.05mg/day. I have seen no improvement in symptoms. My systolic BP has risen from the 90s to the 100s most days and that is the only positive change I have noticed. Over time, I've been developing new symptoms, such as an intermittent red, itchy rash that looks like goose bumps and paresthesia of the feet, hands, and lips. In March, I got a wheelchair so that I will be able to leave the house at times to avoid the increased fatigue and pre-syncope from standing. I have the energy to drive maybe once a month if I'm lucky. Oh yeah, I also have periods of excess energy at times, which I actually enjoy even though they're quite uncomfortable. At least I can get off the couch! OK, this post quite long by now. I want to end by thanking everyone who posts on DINET so incredibly much. With all of the information I've learned by reading the posts on here and on the rest of the site, I was able to request proper testing and follow through on finding a proper diagnosis for my sx. I really appreciate all the research that is posted and explained and discussed by everyone. And, the support that posters provide is amazing, as well. I hope that I can be of help to other members over time, too. Thank you!