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.