Starting Levine's Exercise Protocol Today

[ACB]

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.

[nunntrio]

Good luck. I am in the process of getting all the paperwork filled out as well. It is taking longer then expected. Let us know how it goes!!!

[sue1234]

Good luck and keep us posted!

[radiohfan23]

Hey, I just started yesterday myself. Looks pretty daunting but I'm off work for a while so I will be able to commit to it.

I've done some light workouts (the recumbent bike has been good to use) but nothing like this. Although, I was an athlete all my life prior to all this and ran track in college. The onset was definitely not de-conditioning - if anything i overworked my body as i was training for a half marathon.

The other things I've learned that can help are to use compression stockings up to the waist - I just ordered a pair of under armour compression tights. They will help keep the blood circulating up to your brain more readily and also help with workout fatigue/recovery. You may be surprised how well they work - try working out without them and with them, the difference can be quite remarkable. Wearing them throughout the day helps also.

I also take cold baths after workouts which also helps recovery. As your body warms itself after being cooled it helps carry away the lactic acid. 5-10 mins in cold water up to the waist is plenty. And it doesn't have to be unbearably cold - just run a cold bath (no ice is needed). And it actually will constrict your blood vessels and will feel pretty good (once you're out of the cold water of course).

I'll keep adding to this post to let people know how I'm progressing. I would recommend also that if you're waiting for the program do some recumbent bike/rowing machine at a comfortable pace, even if its just a few minutes - get a good stretch in also (I've gotten very inflexible).

[Ashelton80]

Good luck to you!!! I am about 6 weeks in and I can already tell a HUGE difference. I honestly can't believe it has helped me so much so quickly. I was very very nervous at first, but it has really been all uphill since after the second week. I still have to rest for several hours after I complete the exercise session, but the next day or on my days off I have been able to run errands, take my daughter to school, go eat in restaurants (hadn't done that in 2 years). You can do it!!!

[ACB]

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.

[Mary P]

I hope someone can answer the following questions. 1) Is Dr. Levine's program is made available to people in Canada. I know it will be extremely difficult for me but I'd like to at least do my best to follow whatever is required, even if this is at a slower and less difficult pace, etc. I'm just so 'down' about being almost totally confined to my home.

2) Why does it take so long to get the paperwork that has to be filled out?

3) Would it be worth my while getting a recumbent bike for my home? There's no way I could ever get to a gym.

Thanks so much for any help/suggestions.

Mary p

[ACB]

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!

[Mary P]

Thanks for your input, ABC. I've a lot to think about esp as regards the recumbent bike. I think I'd like to try this. However, as for Dr. Levine's protocol, I've now read all the posts and doubt very much that I could ever handle it.

Mary P

[Daveb]

Ashleton and ACB, best of luck. My son was just accepted into the registry and we are eagerly awaiting the exact protocol from Dr. Levine's office. They tell us it will be a week or two, as there are a couple of people ahead of him. One question, are you doing this at home? We are hoping to at least start at home. My son went to cardiac rehab a few months ago, but dropped it since it was too hard to get up and out of the house three times a week. Thanks, and again, best of luck.

[ACB]

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!

[radiohfan23]

My Progress Update,

So I'm about 3+ weeks in, sorta.

I've done my best to stick with the protocol exactly but am not yet able to complete it as instructed. I'm simply not physically able yet to complete all the workouts as designed. However, I am happy to say that I am definitely improving. A few weeks ago I could only do about 10-15mins of the recumbent bike where as now I was able to do a nice 30 minute workout. It felt unbelievable to complete that workout but it was very difficult to recover from, so I can see this starting to work but I have a long uphill battle in front of me. I am getting very encouraged although it seems at first I had gotten much worse and was worried that this was doing more harm than good. What i've realized that my heart became badly deconditioned simply because of having POTS and the limitation of general exercise throughout the day. I can definitely feel that my heart is laboring and the recovery time is long and difficult after workouts, but even that is improving.

What I've learned thus far that helps:

- Wearing compression stockings during workouts helps (especially when moving between machines)

- Warming up and cooling down is very important - its a good time to relax and let your body get slowly adjusted

- I have a gym within walking distance and my car had broken down for a few days and was in the shop. The days I had to walk to the gym I was in terrible pain trying to workout and my HR was much higher (chest pain, fatigue, dizzy, etc.). I try and stay totally relaxed and slow my heart as much as possible (if at all possible) before working out

- Do the best I can and track everything meticulously - sleeping patterns, med schedule, weather, etc. - even a one minute improvement from one week to the next is a huge deal - or even knowing that although i feel horrible i still made an effort and tried, it may have only been 5 minutes but that is much better than not getting any movement that day because it is at least helping my blood circulate

- Hydrate heavily during workouts - I fill a large water bottle and some low sugar sports drink and make sure to drink it while exercising (definitely have something like this readily available - typically i use propel (gatorade makes it and there's virtually no sugar - tastes good too)

- Have a good recovery routine ready - when i get home i have lots of fluids and a protein shake available almost immediately (as soon as i can drink it) to keep my blood sugar level - it is important to get some nourishment soon within a workout. This has been really tough because I typically get pretty nauseous after workouts so i just get a little something in me once I can eat something - Actually one of the best things that has started happening is that my appetite has gone way up after having recovered from worked out. I actually hunger for food and I can feel my digestion improving which is s huge relief in that my appetite is usually non existent and I have to force food down like a lot of us experience.

- Mornings have been horrible to be honest. I typically workout in the afternoons. I wake up to anxiety and fast heart rate. Although I started taking ZMA a supplement body builders use and it gets me to sleep deeper and not wake up as panicked. For the women I would look into this before taking it because it's meant to improve testosterone levels and may not be good for women. But i would definitely recommend looking into Magnesium and B6 for better deeper sleep.

I realize this is a lot but I wanted to be thorough so I hope this helps. I'll keep posting updates in the coming weeks. Best of luck to everyone and please let us know how your doing and we can all help each other get through this!

Joe

Here's my med/supplement routine:

High protein hypoglycemic diet which levels your blood sugar throughout the day and while you sleep (takes a week or so to adjust to this - had nasty nausea, anxiety getting adjusted)

B vitamins + multi once a day

ZMA at night

Desmopressin nightly

Creatine monohydrate before workouts (I take the liquid that you dissolve under the tongue)- I took this for years when running track in college and it vastly improved energy, stamina, strength and recover time and it's helping me a great deal with the protocol now.

[Daveb]

Best of luck. I'm glad to hear it's going well. In everyone's experience, how long did it take to get the exercise protocol once you were accepted into the registry? My son is eagerly awaiting getting started!

[ACB]

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!

[abnel]

I love reading everyone's updates regarding how they are doing with the protocol. Please keep them coming when you can, and thanks for sharing with us all.

[ACB]

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!

[Sallysblooms]

Wonderful news!

[HopeSprings]

Very inspiring! I can't seem to get the motivation going to try it because I know how HARD it will be. At the same time, I keep hearing people say it's working for them - sounds worth pushing through the pain. Thanks for the update.

[abnel]

Thanks for sharing your experience and please keep us posted on how you go in the months ahead.

[futurehope]

Congratulations! What an accomplishment!

I spent from January to three weeks ago, building up my muscles and my stamina. Of course, with all that, I was doing relatively well. Then.....

I just had gallbladder/umbilical hernia surgery and I'm dreading starting all over again.

Wednesday will be the first day that I will slowly work back to some semblance of normalcy. How easily I lose what I've gained, but the outcome is worth it.

Carry on.

[Frugalmama]

Thank you so much for posting your experiences! I also got an initial email from Dr. levine's office, but I am hesitant to sign onto the study since it requires at least a three month commitment. I have three little kids, so I can't be out of commission right now

I do have a question, though, for folks that know about the protocol! I had Chronic Fatigue for years before developing POTS, and I have experienced major post-exertional malaise ever since the first diagnosis. I have started doing 10 minute sessions on a recumbent bike at home, and have experienced crushing fatigue, weakness and nausea ever since. I guess I'm not sure if the symptoms are just a normal POTSy reaction or the same type of CFS reaction I've always had...and I have no idea how to tell the difference . I'm concerned about doing longer workouts at a higher intensity for weeks/months if I'm still experiencing the same symptoms...since if it's just the POTS "stuff" it will probably get better with time...but if it's CFS, I could completely crash. Any thoughts?

It is really great to here how well folks here are doing with the protocol! It's really encouraging to hear that some symptoms can show improvement!

[yogini]

I would sign up for the protocol, except I don't want to go off my meds. I can exercise. I do lots of yoga and just started up at the gym again after more than a year. I worked out 25 mins fri and 35 mins Sunday 1/2 rowing, 1/2 recumbent bike. I was fine during and after the workouts (which is a HUGE improvement to my previous reactions to working out --- headaches, nausea, weakness, tachycardia), but last night I had a POTS flare up which hasn't calmed down yet. I know it is from the exercise --can't be anything else. I'll keep it up, but maybe slow down a little and increase in small increments.

There are mixed reactions here re: Dr. Levine. I didn't like what I read about him in the Wall St Journal article. But if his protocol works on even a few of us, that is fabulous!!! I am especially impressed by those of you that can do this from a wheelchair. Keep up the good work and keep us posted on your progress.

[ACB]

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!

[abnel]

Thanks so much for posting and letting us know how you're going. I'm really glad to hear it's worked so well for you and that you are feeling more functional than in the past. I appreciate your honesty in sharing your view that while it might reduce symptoms dramatically for some, it's not a magic cure.

I have a query about the protocol that I hope you can answer. There are times when I exercise where I find after (or sometimes during) that I have pushed myself too hard and I have a flare-up immediately.

When this happens, are you meant to continue the programme whenever you are scheduled to do it next, even if you are still in the midst of a flare-up? What does Dr Levine think of this? Does he have a theory about pushing through? Have you ever done this yourself when you've had a flare up and pushed through anyway? Did you feel worse or better?

This is probably the one aspect of the programme that I am most concerned. I usually give myself the opportunity to recover from a flare up. I don't mean that I stop exercise altogether, but I modify it and make it easier for the next few days until I feel strong enough to do what caused the flare up in the first place.

I hope to hear from you again.

[ACB]

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!