ACB

Exercise seems to have helped me tremendously. I would rate how I felt pre-exercise program at about a 2 and at the end of the program at about a 7.

Yes! I totally felt like I was pretending to be a for-real athlete. It was pretty funny. I was panting so hard during those intervals, I felt like I was in labor at the wellness center. I just completed the initial three month protocol again and then repeated the final two weeks of it several times. Then, after realizing that sort of rigidity wasn't going to solve my problems, I finally decided to just take a more relaxed approach to working out in a similar way with the mix of aerobic and strength training workouts. I seem to be doing just as well as I was following the program. Best wishes with your continued exercise and I look forward to reading how you decide to proceed and what sort of response your body has! Thanks for the well wishes with the MCAS stuff!

futurehope, I completed the three month protocol last summer and contacted Levine's PT for advice on how to proceed. She shared an additional three month protocol that had not been studied, but was recommended as a next step. I did about three weeks of that protocol and my POTS sx became much worse. I also developed some problems with a vein in my calf that I'm still having now. I'm actually going next week for an ultrasound to rule out superficial thrombophlebitis. The protocol increased in difficulty in large part by the addition of interval workouts. Sweet mother of pearl! Those workouts were HARD and seemed to be inappropriate for me to try at that time. Like you and nunntrio, my perspective is that exercise is helpful for me, but not a cure. BTW, I'm also exploring MCAS and have a call in to Dr Afrin's office to schedule an appt.

Yes, Potsgirl93, bellajulz is right. Lawyers are not allowed to charge clients for disability cases. Instead, if your case wins, the lawyer takes 20% of your back pay. If your case loses, they take nothing. So, really, finance-wise, it is totally worth it to get a lawyer. I bet you could do some internet searches for a good SSA lawyer in your area. I hope this info can help you and your family. bellajulz, I'm wondering the same thing! Apparently, the particular judge I had sometimes takes up to a year to write her letter of approval to the SSA. I'm guessing it could be a year or more before I receive any benefits. Good times. Best wishes with your upcoming hearing!

Naomi and Anoj, the VE and ME were both requested by the judge. I was fairly worried that the ME would not have a good understanding of POTS, as he is an internist who works as an "expert" in court hearings. However, he just gave a basic description of POTS as an autonomic nervous system problem and stated that the tachycardia involved would "equal" the listing for arrhythmia. So, that was good. But, yeah, the experts were there because the judge wanted them there to inform her decision. Smart move with such a weird case. dani, it took a LONG time to get the hearing date. I live in OK and was told by my legal rep to expect roughly 7 months for the hearing. Turned out to be 10 months. It gets better. Now that the judge has ruled in favor, it can take a YEAR for her to write the ruling and get it to the SSA. WHAT?!?

Katie, I was having a mixed day, with some bad symptoms occurring during the hearing. Not that it made a difference. I was a bit worried that I'd be having a "good" day and not "look sick," but it doesn't seem that it would've made a difference based on my hearing. The ME was phoning in his participation through the tv (something like Skype, but w/o a picture). I have pretty bad problems with sound sensitivity at times and, man, his voice over the TV was a big trigger. Shortly after he started talking, I started having dyspnea, then tachypnea, then presyncope all while sitting still with no other stimuli in the room. The judge, VE, and of course the ME did not even see this happening. Haha. The judge and VE were busy writing/listening. I was panting like a freaking dog and my husband and legal rep kept looking over to check on me. I was so out it by the end of the ME's talking and the hearing lasted about 1.5 minutes longer...just long enough for the VE to say a few things to the judge and for the judge to say, "Hearing adjourned. Thank you all." And, for me to think, "What the what?!? I have no idea what just happened. Where are we? Who am I." Haha. I wish you the best with your upcoming hearing. If you're able to take someone in addition to your legal rep for support, I highly suggest it. I was so glad to have my husband there.

I haven't posted much in a while. In the past, I've written a bit about my experience with the Levine protocol. No, I'm not one of the POTSies who got better and left the board. I just lurk, mostly. Just wanted to write a post to let people know that I was approved by a judge yesterday for SSDI benefits. Yay! My disability onset was June 2010. I applied for SSDI in Mar 2011 and was denied. I appealed later last spring and was denied again. Last summer, I acquired a legal rep to help with my second appeal. We finally had the hearing yesterday and the decision was in my favor. In addition to the judge and my legal rep, my husband was there, as well as a "medical expert" and a "vocational expert." The ME did a pretty good job of providing a basic description of POTS and stated that, while it did not "meet the listing" for arrhythmia, it did equal it. The other thing about my denials was that the SSA said I wasn't actually disabled before Sept 2010, which was when my disability points (or whatever they're called) ran out. I am 34 years old and went to college and grad school, then worked, and then quit working three years ago when my son was born, so I don't have a TON of work credits. Apparently, they expired at the end of Sept 2010, so part of the hearing was to determine whether I was actually disabled before that date. I love that a ME had to read aloud the paperwork I submitted over a year ago in order for that to be determined. But, whatever. I'm so relieved to be finished with this hurdle and that my family can all relax a little money-wise now. Thank you to everyone here who has contributed information about applying for SSDI/SSI. I've read so many posts here and have certainly benefited from the info shared.

Futurehope, I should've specified that the blood clot was in a superficial vein. Not life threatening, just a bit painful and a little ugly. I think exercising everyday would be great. That said, I don't do it. However, I don't take off more than three days, and rarely that much. Usually, I exercise everyday to every other day. That seems to work best for me. Hope this helps!

Last week, I finished the third month of the protocol. This is the second time I've completed the three month protocol from Levine. The first time, I was wondering how to proceed after month three, so I contacted the PT on Levine's team. She sent me an unstudied, but recommended, extra three month protocol to do. In the second week of it, interval training started. Unfortunately, those interval workouts caused my POTS sx to increase substantially and I got a superficial blood clot in my leg that I'm still dealing with. There was no way to know how my body would respond to taxing it even further with those intervals without trying it, though. I did the protocol April-June of last year and then started the additional protocol in July. In July, the blood clot appeared and I started feeling worse, so I decided to lay off the exercise to let the clot heal and go to Mayo for a full eval. I went to Mayo in late October and by then my clot was doing better and I was doing worse from not exercising at all. When I got home from Mayo in early Nov, I restarted the Levine protocol from the beginning and have just now finished the three months. (I took my time this time around.) My clot feels like its trying to return, so now I'm using aspirin and wrapping it during workouts and that's helping. Mayo recommended that I wait 6 months to a year before trying intervals again. I totally agree. So, I'm just going to repeat the last two weeks of the protocol for a while and see how I do and go from there. For me, exercise has not been a "cure." It has, however, been the best tool for symptom management that I've tried. I've tried about 10 meds that haven't worked and am currently on a couple that seem to help with some sx. Salt/water loading does not seem to help me. Compression hose do seem to help, but exercise has allowed me to go from wheelchair bound to leaving the house almost everyday - even with my three-year-old in tow! That's a BIG change. As an aside, I know a lot of dinet posters comment that people leave the forum when they get well. I sure as heck did that last June/early July. However, since then, I have been reading almost daily. I haven't posted because I usually read on the iPod and there is NO way I could write a post on that tiny keypad. Just wanted to point out that some people may still be lurking like I am.

I've been wondering about blood volume since my POTS diagnosis in Feb '11. I have been instructed to salt and water load, but had never had a blood volume test. A couple weeks ago, I went to Mayo Rochester for testing, because my local docs treatment plans were not working. At Mayo, I did a 24-hr urine collection. At my doc and nurse consults up there, I was shown the results of that collection, which indicated that my output was good (meaning that I was drinking enough water), and that my sodium levels were normal. However, they said that they wanted to see my sodium levels at the upper end of normal, because that's what they recommend for POTS pts. I was instructed to increase my sodium intake and to have another 24-hr urine collection in 3-4 wks. Reading in this thread that Mayo has access to Daxor equipment, I don't understand why a "real" blood volume test wasn't run. Any thoughts on this?

Issie and Beckles, thank you for your feedback on taking propranolol. The two Mayo docs who recommended it did not mention that I needed to keep a steady stream of it in my body. That info would've been helpful. I was prescribed 10mg 2/day to start and then told to go up to 3-4 doses/day depending upon what seemed to work best. Naomi, thanks for checking in. I haven't posted, because I've been feeling worse and because I've been trying to figure out why and what dosage is going to help best. Yesterday was a rough day. I cried a long time in the afternoon because I'm just so tired of trying treatments and trying not to get my hopes up about them working. I was feeling like things are never really going to get better. I'm sure everyone can relate, unfortunately. Dani, I'm one of those hyper POTSies who doesn't have high BP, usually. Last year, I had low BP with narrow pulse pressure. Now, I have normal BP. Over the past couple years, several times at doc appts, I've had high BP. As far as current dosage goes, I've been taking 10mg 4x/day. I've done that the past 2 days. However, I'm having to go to bed anywhere between 8p (due to fatigue) and 10p, so it is hard to fit in that last dose. My husband woke me up last night to take it. I can't tell how much going up to 4x/day is helping. I started my exercise protocol last Sunday evening, so I'm 99% sure the exercise is what's making me feel like crap. I took the propranolol last Sat and Sun before starting the exercise and it worked pretty darn well. It also worked well on Mon and since then my sx have been steadily increasing. Yesterday, I spent all day on the couch with fatigue. Today, I'm having sound sensitivity in addition to fatigue and little hints of dyspnea here and there. So, I'm not sure whether things would be MUCH worse without the propranolol or if its just not touching my body's short term rebellion against the exercise. Thank you all so much for your support. I'm feeling very frustrated and upset about POTS after having had significant improvement over the summer. Its hard to go back to all the old symptoms and accompanying problems with family, friends, etc. I'm so thankful to have dinet to visit when I can.

Naomi, here's what's going on so far with propranolol. It has lowered my HR by approx 20 BPM. Haven't checked BP, so IDK what's going on there. The first couple days on it, I was quite dizzy at times, which was probably due to low BP. However, the dizziness has dissipated. I typically have normal BP these days, so it looks like the lowering of BP isn't going to be an issue in my case for now. Overall, my cognitive problems have improved vastly. I have been able to have real, meaningful conversations with my husband and talk to my 3-yr-old without word finding issues. Right now, I'm working on finding what will work best to manage my symptoms. I haven't found it yet. Yesterday, I took 10mg at 8a and then again at 2p. I was planning to take another around 8p, but was still feeling quite good, so I decided to omit it. This morning, I had a hard time getting out of bed and had/have a super stiff neck and shoulder area (one doc indicated this sx may be due to norepi release during certain sleep cycles). I also am not feeling too awesome this afternoon, either. I took 10mg at 8a then again around 12p, because I was feeling pretty fatigued. Today, I'm more fatigued that I've been since starting propranolol last Sat, still have neck/shoulder tightness, and am working on a headache. Sooo, IDK whether this increase in sx is due to not taking that pill last night or not. I know it is typical to have a sx increase after stopping propranolol, but wonder whether skipping one dose could lead to this increase in sx. Anyone?

potsgirl, yes, it was Mayo Rochester. I was there for a week - three days of testing, two days of consults.

The ANS doc suggested propranolol as a first attempt, because it often helps with hyper POTS. Also, it crosses the blood-brain barrier and may help with cognitive symptoms. I have brain fog and really bad sound sensitivity, which he attributed to my brain (CNS) more than ANS. So, propranolol seemed the best to try first. Interestingly, the exercise protocol they recommended I do is the Levine protocol I'd done in the past. It (the studied, 3-month protocol) worked really well for me, so they advised that I redo it from the start. If you're interested in obtaining a protocol, I highly recommend contacting Levine's crew via your doc.

Anaphylaxing, the ANS specialist said that for most, PN does not continue to worsen. There was no talk of looking for the cause or trying any meds at this time. That's cool with me. The PN was diagnosed by a thermoregulatory sweat test (TST). I didn't sweat on my toes, and several other foot areas, on my fingertips, and on my right knuckles (the knuckles can be a pretty normal place to not sweat). My PN symptom progression has been like this - as a teen, I developed periods of painfully cold feet that would sweat a TON and my hands were occasionally uncomfortably cold. I've had those symptoms my whole life. At 34, my feet have gradually stopped sweating excessively and now sometimes burn rather than turn cold. My hands sometimes burn instead of feeling cold, as well. So, over about 20 years my symptoms have not changed that drastically. As long as things don't get too painful, I'm just going to roll with these symptoms. However, if problems do increase unmanageably, I'll probably go for another TST to see if the neuropathy is getting worse. I'm not a big fan of taking lots of meds, so this approach works for me.

Caterpilly, you're right. Mayo does not have any special cures tucked away. In fact, I was advised to continue doing everything I've been doing since last Feb or so with the exception of trying propranolol. My husband was pretty miffed about the visit at first, because he was expecting some new options. Fortunately, I knew (from dinet!) that wasn't gonna happen. I did feel good about having the extensive testing done there, though, because the only thing I'd had done prior was a TTT. At Mayo, I knew people would know which tests I needed and how to interpret them (as well as anyone can "know" those things for POTS). The Levine protocol was tough at times. And, it may be too extreme for you. Who knows? In my case, I've found that I really don't know for sure until I try things and see how they go. By the time I received the protocol, I was at my worst. I was in a wheelchair when I left the house due to presyncope and not wanting to faint in public where it could be dangerous. I was too fatigued to drive or care for my son appropriately. I was couch bound and felt exhausted walking to the bathroom from the couch (and our house is <1000 sf!). We hired a FT caregiver for myself and son in Jan and I began the protocol in May. Initially, the caregiver drove me to the wellness center and wheeled me up to the workout area. She then returned to pick me up when I was finished. It was rough. The first month of the protocol, I didn't notice any changes. The second month, it was sorta like two steps forward one step back. By the end of the third month, I believed that I was going to be able to manage my POTS with exercise and cancelled an appt I had with Mayo at that time. I think it was sometime in the second month of the protocol that I was able to ditch the wheelchair. I hope this info helps. If I can answer any more questions, I'd love to.

The diagnoses I received were hyperadrenergic POTS and peripheral neuropathy. Thanks to all the info here and all the scientific article reading I've been doing over the past year, I was expecting both. I can't remember my norepi levels off the top of my head, but resting was WNL and standing was near 1000. I got the neuropathy dx based on the finding from the TST that parts of my hands and feet don't sweat. I also have uncomfortable symptoms in them (i.e., freezing cold, burning hot, tingling). My urine output was good, but sodium was lower than what they recommend for POTSies, so I'm to add 1g of salt daily and have another 24-hr urine test in 3-4 weeks to see how that helps. It was also recommended that I continue to wear my compression hose, resume the exercise protocol I'd been doing (more on that in next paragraph), and try propranolol or nadolol. I'd been doing Levine's 3 month exercise protocol, finished it and started a second 3 month protocol his PT shared with me. That one has not been studied and had me doing interval training. After a couple weeks of doing intervals 1-2x/wk, I started getting worse and developed a superficial blood clot in my leg that I'm still having trouble with! The Mayo docs said I should return to the protocol, but start from the very beginning and then don't move on to the intervals, because they might have been too much for my body to handle. Dr Allison (head of the cardiac exercise research at Mayo) also recommended that I either wrap or wear light knee high compression over the vein that's giving me trouble while exercising. I was so glad to hear some kind of idea about how to deal with that. I've not exercised since early Sept and my symptoms have been returning big time, so I'm very eager to get back into it. Interestingly, Mayo does not recommend a target HR for exercise like Levine. Instead, they recommend working at a perceived rate of exertion between fairly light and somewhat hard. I started 10mg propranolol 2x/day today and it has helped all my symptoms to some degree, but has caused dizziness. It was recommended that I try various approaches to taking it to see what will work for me. I'm thinking that splitting a pill tomorrow might be the right approach. See if it will still help, but decrease the dizziness. We'll see. I really wasn't expecting it to do much, but have been very pleasantly surprised with how I've felt today.

Naomi, my husband and I drove up from OK. We stayed at the Kahler Inn & Suites, which is connected via subway (underground walkway). I was seen on an outpatient basis M-F this week with multiple appts each day. Staying at a connected hotel was wonderful. I have cold sensitivity, so being able to stay inside was pretty sweet.

I'm at Mayo right now. My cardio referred me up here. I've had appts in both neurology and cardiology for testing and feedback. I did not see an internist here. Perhaps they'd like you to see one because they recognize symptoms that may be outside the realm of POTS that may need to be checked out, too?

Naomi, basically, they were looking to bring me to the point of experiencing symptoms up to a faint to see what my BP and HR did. I was supposed to alert them when I was about to faint so that they could end the test before I did. I never began to feel lightheaded or have any presyncope feelings during the 45 min, so they continued with the isoproterenol to induce further symptoms to see how my HR and BP responded. I probably wasn't clear about that in my original post. I just expected to faint, because that's how I responded on my first TTT back home after Isoproterenol admin.

I don't know my exact level, but it was just tested earlier this week and was within normal limits. A nurse at Mayo mentioned it to me because she often sees low levels in POTS patients and was interested to see that mine was WNL. I started following the paleo diet in late March, so I eat lots of meat and therefore lots of iron. IDK about others, but I still have all my old POTS sx and am continuing to amass more all the time. It seems that ferritin doesn't affect my situation.

I'm at Mayo this week for POTS testing and thought some people might like to read what my visit has been like. I don't have my schedule with me right now, so I'm just going to do my foggy best to recall what testing I've had so far. Monday started at 6:50a with a blood draw. I then received what I would describe as a convenience store counter sized pickle jar container and a 12-oz cup to collect my urine for 24 hrs. I scoffed at the size of the container initially, thinking there was no way I'd need that much space for my urine. Boy, was I wrong. From there, I had an EKG, an echo, a chest xray, and a QSART (during the QSART testing period, I also performed the Valsalva maneuver, did a deep breathing thing, and had a 10 min TTT). I also wore a 6-hr BP monitor that took my BP every 10 min. That's a lot of testing! Tuesday, I had a thermoregulatory sweat test, started a 24-hr Holter monitor, and met with the POTS nurse who took my history. The TST was incredibly interesting (and super uncomfortable). I watched most of my body change from gold dust colored to dark purple under heat lamps while listening to Johnny Cash. They pipe in music. Listening to Ring of Fire while feeling as though I was close to suffocating inside a literal ring of fire was surreal. Wednesday, I had a 45-min TTT during which I did not faint, so isoproterenol was administered and I continued the full 15 extra minutes on that without fainting, as well. I did cry, have strong palps, and strong dyspnea. I also had a big burst of energy with facial flushing before the isoproterenol was started, so I wonder whether that helped me power through the drug. The nurse appropriately said he did not know whether that could be the case. Tomorrow, I'm scheduled to meet with a neuro and a cardio for feedback. Seems like I'm also scheduled for some exercise training with a PT. Friday, I'm scheduled for part two with the PT and a follow up with the nurse to go over everything as a whole. Hope this might help some people who may be considering Mayo and would like a better idea of what could be in store. This was what was scheduled for me given my history and symptoms. I'm sure it varies for everyone, but there should be considerable overlap.

I wish I had a doc to recommend! Thank you so much for working on updating the list! I look forward to searching it when you are finished. Good luck with wrapping it up and I hope you don't lose any more work!

That's great! I'm so glad to hear your positive review of Dr Alison.

Thanks, kcmom! Yes, I was diagnosed via TTT in late February '10. Dietary changes don't seem to have helped POTS, but they're making me feel better in other ways, so that's good! Levine's exercise protocol was working wonders until I finished it and moved on to a more strenuous protocol recommended by his team. A couple weeks after beginning it, I began to have increased symptoms and then developed a superficial blood clot that won't go away. So, that's not good. I haven't been able to work out for weeks now and my symptoms are creeping back. I'll be so glad to talk to some pros at Mayo. My schedule doesn't have me listed with one particular doc, so I called and asked about that. A woman in the cardio dept told me that I'll be meeting with several people, including Dr David Bradley and Dr Alison. I've read good things about Bradley, but know nothing about Alison. Plus, I'll be meeting with a nurse in the dept several times across the week.