ACB

I've got an appointment coming up next Mon-Fri for testing and consults at Mayo MN. I'm really looking forward to learning more about what's going on! I know a number of dinet members have been up there. If anyone has any tips they'd like to offer, I'd love to hear them! Anything from what to expect to restaurants to whatever else might seem useful. My husband and I are making the drive up from Oklahoma this coming weekend. We're not flying because I think my sound sensitivity would be through the roof in the airport and because I have a superficial blood clot (and who knows what else might be lurking in my leg). We've got the week booked at the Kahler Inn and Suites. Its all connected to the buildings at the downtown campus. We'll just have to drive over to St Mary's one day for the TTT. It seems like I read a post sometime ago that mentioned that you can request each day's medical records at the end of the day. Does anyone know if that's the case and where to do that? Thanks to everyone for making this forum so incredibly helpful!

I started complaining to my mom about chest pains at age 3 or 4. The pediatrician listened to my heart several times across a few appts, but no other testing was ever done. I seemed normal otherwise at that point. I grew up eating Tums VERY frequently, because my mom figured it was heartburn. Funny. They never worked.

I've been wondering the same thing about my behavior, as well. I experience what you are describing, too. I feel like a totally different person when it happens. Before I got my POTS diagnosis, I thought I'd turned into the biggest B of all time. Since the dx and noticing the correlation between changes in my behavior and POTS symptoms, though, I've come to think that my irritability occurs in relation to POTS. Its like a switch flips inside me and I just explode sometimes. I, too, feel horrible about it and then apologize when my POTS symptoms have decreased again and I can be reasonable. When I've tried to explain this to others, they think I'm talking about being irritable because I don't feel well. Nope. That's not it. Its more like something that just happens and I can't control it. I find that sometimes I can catch myself beginning to become irritable and immediately stop what I'm doing to go rest quietly and I can control it. Other times, the irritability seems to come on so rapidly that I don't recognize it before its too late. I'm really glad you posted this topic, because I haven't read anyone else describe feeling this way with POTS. I feel better knowing I'm not the only one.

Thanks for the replies! I wish I had a PCP close to OKC who knew some about POTS. Glad to hear that you do, PotsyTurvy! And, yes, I have an appointment at Mayo for a week's worth of testing at the end of October to get a better idea of what's going on. I do have some symptoms that are consistent with MCAD, so it makes me uneasy to even be trying this beta blocker. From what I've read, they can trigger problems with mast cells in some people. I doubt my cardio knows this.

Part one: My cardiologist started me on 25mg metoprolol ER succinate 2x/day about 2.5 weeks ago. While my HR has been 20-30 BPM lower than it was, as far as overall POTS symptoms, I've had ups and downs (generally the same as I usually do) since beginning it. However, last week, one evening I had some pretty strong facial flushing, followed by burning feet. Now, I've had facial flushing in the past, so that's not new to my symptom cashe. But, the burning feet is totally new and the extreme opposite of a symptom I have all.the.time, which is cold feet - often painfully cold. Part two: After 8 months of seeing various docs, including several cardiologists in the Oklahoma City metro area, I finally got a POTS diagnosis late last Feb. I'm currently seeing a cardiologist in OKC who is managing my POTS (see part one). However, he has a limited understanding of POTS and treatment and I'd obviously like to see someone who gets it and who is up on recent research and is in Oklahoma. Is that too much to ask?!? Probably. I'm interested in any feedback or suggestions on these topics!

Lotusflower, as far as good initial exercise, recumbent types are recommended by the pros. So, the recumbent bike, rowing machine, and strength training you can do without standing are great. HR zones vary by person and are determined for the Levine protocol by a stand test participants do with their doctor before starting it. Before I started the protocol, right after I got diagnosed, I bought a recumbent bike and just did what I could each day. I didn't know how hard or how easy to take it, so I just did what I could (which was very little at that point!). The exercises on the protocol do increase in intensity and duration.

Lotusflower, I received the protocol through my PCP and have never personally spoken with Levine. I've been in contact via email with a PT who works with him a few times, however. On the protocol, its my understanding that followers are supposed to exercise through the flares and that is what I have done. If I didn't, I'd never have completed the darn thing! I have flares sometimes right after exercise, sometimes a couple days after, and sometimes during - and then I also have flares that seem unrelated to the exercise. Good old POTS and its unpredictability! My response to pushing through varies, as well. Sometimes I feel better, sometimes worse, and sometimes the same. Usually, I'll feel better during the exercise (sometimes a whole lot better), then I'll return to feeling just as bad as before I started. Its hard to know what the right approach to exercise is, given that I don't know what the actual cause of my POTS is. I'm hopeful that the folks at Mayo will be able to help with that. Best wishes with your continued exercise!

Hi Alicia, I've been working beyond Levine's three month exercise protocol for almost two months now. My ability to do household work varies greatly each day, throughout the day. Usually, I can still do at least some amount of laundry and light cleaning after doing cardio/weight training that day.

OK, folks. Time for a new update on this treatment. I finished the three month protocol a while back and contacted Levine's crew about how to proceed. I was given an (unstudied) extra three month protocol to do. I'm now in the middle of it. These exercises are an extension of what was on the initial protocol. They're harder - I do interval training approximately 1x/wk in addition to continuing the exercises I did during the first three months and I have just one day off per month. Working with my local cardiologist, we decided that I would try the Levine protocol for three months and that if it wasn't working well enough, I would go to Mayo for their POTS clinic. I had a Mayo appt set for the week of July 25 (right around the time my initial three month protocol was ending). I was continually improving throughout July - to the point where I took a 3-hr road trip with my 2-year-old son to visit my mom and some friends for a week. I couldn't believe I was functional enough to even think about attempting that trip! I thought I was close to wellville. So, I cancelled that Mayo appt. I was so relieved to be 1) getting well and 2) saving my family from additional emotional and financial stress! During the trip, I had a day or two when I felt increased POTS symptoms, but did quite well, overall. Then, a day or two after we returned home, I started feeling increasingly POTSy. I had a checkup with my cardiologist a couple weeks later - after spending half the previous day unable to get off the couch - and he suggested rescheduling with Mayo. So, I did. My new Mayo appt is during the week of Oct 31 - Nov 4. I can't wait for it to get here. Yesterday, I had a major increase in symptoms - tried to go to TJ Maxx with my husband and got crazy dizzy/nauseated and experienced depersonalization (feeling like you're outside your body). What the WHAT?!? I haven't had symptoms like that since probably March when things were at their worst. This sort of symptom burst has been happening to a lesser degree since I've been improving on the exercise protocol - with obvious periods of increased wellness (like when I thought I was "well" last month). So, my response to the protocol has certainly been one of improved functioning. I'm out of the wheelchair (yay!) and no longer require full-time assistance to care for myself and son while my hubs is at work (double yay!), but I'm not well by any means. My friends see me and think I'm well. In fact, last week, I took my son to a friend's house to play and my friend looked at me like I was crazy and asked why in the heck I'm rescheduling with Mayo. In that moment, I was having paresthesia in my hands, mild headache, cognitive difficulties, fatigue, and a cold feeling all over. But, I look fit and healthy from all this exercise (and my dietary changes)! I'm certainly going to continue to exercise. This protocol has changed my life in numerous positive ways and when I'm working out, its usually the best I feel all day. So, I'll certainly keep it up. If I can answer any questions anyone has, I'd love to!

How timely! I was just logging on to update my original post about the protocol. I'll do that now!

Just wanted to pop in to leave an update about my experience with the protocol thus far. I've recently started the third month of the protocol and about a week or so ago, I started exercising completely upright (i.e., walking!). I'm getting noticeably better each day at this point. For the first month, I muddled through the exercise and didn't see any changes, but did revel in my ability to actually DO the exercise. During the second month, progress generally occurred in the two steps forward, one step backward fashion. In other words, I experienced increased energy, improved cognitive functioning, decreased dyspnea, etc. at times, but also had periods of increased sx during this time. Over the course of the second month, my good periods began to occur more frequently than my bad periods. Now that I'm about a week into the third month, I have begun doing things I haven't done in roughly six months (e.g., driving, walking in a store rather than using my wheelchair, playing with my son longer than 10 min on the floor, cooking). Yesterday was my most eventful day so far - I walked 55 min in the AM, rode around in the car with my family to house hunt for an hour, helped make lunch, went to the grocery store for 20 min by myself, went out to eat for dinner. Amazing! Although the exercise has helped immensely, I do still have symptoms of POTS at a lower level of severity (e.g., cognitive difficulties, blood pooling in feet, fatigue). Exercise is not a complete cure; rather, it is a tool that I can use to help manage the symptoms. At least, that's my perspective. I'll try to remember to post again at the end of the month, too. Thanks to everyone for your support!

Naomi, Thank you for linking this article! I agree that there appear to be some big problems with Levine's research regarding POTS (as well as some errors/less than stellar reporting by the author of this WSJ article). However, I was interested to read that "Dr. Levine presented research last week indicating that as little as 30 minutes a day of rowing could be as effective as 90 minutes of cycling." I'm currently on week 3 of Levine's exercise protocol, during which the importance of rowing is stressed. This new data was interesting to me and could be helpful for POTSies who *do* benefit from exercise. If anyone is interested in reading the poster abstract from the "Humans in Space" symposium, you can find it here - http://www.dsls.usra.edu/meetings/iaa2011/pdf/2280.pdf BTW, the patient in the article with the "near complete recovery" is the woman who blogs at http://www.potsrecovery.com/

I'm starting week three of the protocol today. Yep, HR is individualized based on your 10min stand test. Maybe I'm wrong, but doing a single stand test seems like a poor assessment approach given that POTS is highly variable. In my case, my HR was quite a bit lower the morning of my test than it typically is. I wonder if they'll modify this assessment in the future and how that might impact treatment.

Radiohfan, I'm glad to hear that you're powering through. Keep up the awesome work! I look forward to your next update. Daveb, In my case, it took 1.5 months to get the protocol! Turned out that the delay was due to my PA not faxing my stand test results for a month, though. Aargh! Hope your son gets his in a timely fashion. As far as my progress goes, things are going well, overall. I'm finishing my second week today. I had an increase in symptoms last weekend, however. I think that may have happened because I did three cardio workouts on consecutive days - I was squeezing workouts together to finish them before going out of town for the weekend. I sure didn't anticipate the results, though it makes sense that doing that would tax my body. Otherwise, I've been handling the workouts and recovery very well. I am attributing that to the fact that I'd already been doing bike cardio for a couple months before starting the protocol. I still can't stand up for more than a minute, but I can ride this bike like nobody's business!

True about the sodium. My cardiologist hasn't had my blood volume tested and I have forgotten at every appt to request it. I don't know if I should be salt loading or not! Awesome that the diet was helpful for your AS and POTS! Would you care to give details about how the it helped your POTS symptoms? And, did you discontinue the diet? If so, why?

Good question. I'm going ahead with the salt and water loading, even though they're not a part of the diet. In one of Cordain's scholarly articles about the paleo diet, it is estimated that a typical hunter-gatherer would eat approximately 700-800mg of sodium per day. Makes sense, given that sodium would come solely from food sources rather than being additive. On Levine's exercise protocol, I'm supposed to take in 10,000mg of sodium per day. (Yikes!) The most I'm able to get is in the 3,000mg range - and that's with dumping salt by the 1/4tsp-full on my food. I'm just working with what info I have and doing the best I can. Who knows if I'm doing the right thing. If you try the diet, I'd love to hear about your experience with it!

Oh, wow! I didn't know the pasting the link would put the video in my post. Just an FYI: the video is almost 10 minutes long and is the first of seven (yikes!) in the presentation.

Several weeks ago, while pushing through a recumbent bike ride, I stumbled upon a series of youtube videos of Loren Cordain, PhD giving a lecture on the potential of using the paleo diet to treat multiple sclerosis. The title of Cordain's talk was "Potential Therapeutic Characteristics of Preagricultural Diets in the Prevention and Treatment of Multiple Sclerosis." (OK, I'm tired after just typing out that title.) The link is MS is considered to be an autoimmune disorder in which the body attacks the central nervous system, specifically myelin in neurons. No newsflash here: MS and POTS are quite different. However, in some people, POTS is considered to be an autoimmune problem. And, from the way my symptoms have developed, it appears that there is probably an autoimmune component to mine. So, in my attempt at grasping for any evidence based treatment that could potentially help with POTS, I decided to watch the videos. Because I'd already been reading quite a bit about the paleo diet for a couple weeks when I found this series of videos, after I watched them, I decided to give the modified-for-treating-MS paleo diet a go. I've been on it for 2-3 weeks now. The past two weeks, I've been feeling better, overall. I still can't stand up for more than a minute most days, but when I'm sitting I do have more energy than I have over the past several months. Whether this change has anything to do with the paleo diet, I can't say - too many confounds. I've been salt and water loading, elevating the head of the bed, wearing compression hose, and exercising for several months now. Maybe those behaviors are starting to have an effect. Maybe it's something else. Who knows with this crazy POTS. What I do think I can attribute to the paleo diet is decreased bloating, improved regularity of bowel movements (sorry, TMI), and decreased symptoms I experienced right after eating large amounts of sugar. A couple days after starting the diet, these changes happened and have been constant during the past few weeks since starting the diet. So, that's nice. Anyone heard of this approach to treatment of MS or other autoimmune disorders? Anyone have thoughts or other areas research you could point out related to dietary treatment for POTS?

Mary, I also thought there was no way I could exercise. I mean, most days I can only stand less than a minute before having to recline or lay down due to increased fatigue and dyspnea upon standing. So frustrating! Before obtaining Levine's protocol, I started with what was manageable for me on the recumbent bike and with strengthening exercises. You could always have your doc request the protocol for you and try working up to it. I guess I'm just saying that you never know until you try, right? In any event, best wishes with trying whatever you find that works for you - we're all different! Daveb, Thanks for the well wishes! I'm right at the end of my first week of the protocol. I hear ya on attempting this at home. Trying to get from home to a gym is exhausting and seemingly impossible - and then you're supposed to start the exercise?! If you have the proper equipment at home, your son could do it there. We only have a recumbent bike and some free weights, so I've started with those this week. After a long discussion with my husband, we finally decided that I would join a nearby wellness center for the rowing machine and weight machines. We just don't have the room in our home to add those things - but, believe me, we tried to figure out a way to squeeze them somewhere so that I wouldn't have to leave home to workout. So, for us, it's a bit of a compromise: I did join a gym, but also plan to do the bike at home as often as I can. Hope this helps! And, best wishes to your son and your family!

Mary, 1) I'm pretty sure anyone world wide who qualifies for the study can obtain the protocol. 2) It takes a long time to get everything set up because Levine's office is very busy and backed up with work. 3) In my case, it has been worth it to have a recumbent bike at home. I had been riding it every other day (as my symptoms allowed) for about 2.5 months before starting the protocol. I'd also been doing lower body strengthening exercises (e.g., crunches, leg lifts) on off days. I think doing those exercises have helped strengthen my heart and skeletal muscle pump and prepared me for the intense protocol that I just started. Best wishes with your exercise and with contacting Levine's office if you decide to pursue it!

Radiohfan23, Best wishes with your exercise and thank you for the tips! I have been riding the recumbent bike, too, and doing some very easy lower body strength training for the past couple months while I've been waiting for my protocol. Those exercises have been really helpful in getting me up to speed to start the protocol - it is tough compared to what I've been doing. I've been wondering about the compression hose. I wear the medical supply kind - 30-40mmHG, pantyhose - daily, but I have been taking them off to workout. I'll try wearing them during a workout to see if they help me, too! I look forward to reading about your progress and wish you the best! Ashelton80, Thank you for your inspirational post! I am so hopeful to gain the types of improvements you have. I can't even imagine getting out to run errands! I'm so happy for you! Best wishes with the rest of your protocol (and beyond!) workouts.

I'm super excited to be starting the exercise protocol. There were some issues with getting the paperwork, so I've been waiting for a couple months and am so glad to be starting something that could potentially help. I've got a recumbent bike here at home, so I'll start with that today. Then, I need to figure out where to go from there. I may join a nearby gym. If I do, I'll need to figure out how in the world will I get there (not to mention do the workout) when I can hardly leave the house most days.

I'm sorry to hear about the decline you've been having. It can be so rough to go from being somewhat functional to losing what you had. The ups and downs of POTS are really difficult. I'll be thinking about you and sending good thoughts your way.

I'm sorry, too, to hear about the errors in your report. It happens often, unfortunately. I agree that you should call to have it amended. I've recently had to do that when I was diagnosed with Pott's Disease - a form of tuberculosis! Bwahahaha. Just because it *sounds* like "POTS" and has an ICD code doesn't mean you can slap it on a patient's problem list! Best wishes with getting that info amended!

I'm glad to hear that your doc was supportive in light of the essentially normal test results. How frustrating it must be to have gotten those! Enjoy this period of feeling your best in nine years! Best wishes with your continued treatment!