Autonomic Neurologist

Go on ahead and Google that one and see how many you find... yeah, it's not many. That's why I was VERY motivated to get an appointment with one while I'm at the Mayo Clinic this week. It was not an easy task, and it sure hit a snag with the blizzard last night, but I managed to get in to see one.

I was able to pick his brain for a while, and I feel like he really explained so much. Here's a few big take-aways from talking with him:

• No matter what medications you are on, one of the big things is maintaining your salt balance. If you don't have enough salt in your system, your meds cannot work. DON'T do this by just guessing. Ask your doctor for a 24 hour urine sodium study. This will give the doctor a read on your total urine output in a 24 hour period, and your actual sodium content of the urine. Your output sodium, as a POTS patient, should be between 180 and 220. If it's low, you are not getting enough sodium and can supplement with salt tabs or electrolyte drinks. If it's too high, you can adjust down.
• The norepinephrine response test can be a useful tool, but it must be done at a testing center. Only a testing center will be able to follow the right protocols and go through all the appropriate steps in terms of having you change position. There are not a lot of testing centers around, almost zero west of the Mississippi, so you will have to go to a lot of trouble to have this completed if you don't live in one of the sweet spots. However, it's probably NOT worth going to the trouble unless you've exhausted other options and nothing is working. Most POTS patients have very normal test results here and learn nothing of real value.
• Cytokines are not good. Try to stay away from those. I'm going to have to do some research on what that translates to in the real world, but it was something he threw out at me. More to follow, I promise.
• Ketogenic diets have not been studied for their true usefulness to POTS patients, but he has known a few patients to go that route. It's not terribly likely that a ketogenic diet will do much for your symptoms and it's a very difficult diet to be on. He doesn't recommend it, although he DID recommend aiming for a higher proportion of protein to carbs in your diet. If you look at your diet in terms of percentages, most conventional wisdom tells us to aim for a 50% carbs, 30% fats, 20% protein diet. That's not beneficial for POTS patients. Aim for 6 meals a day, get your sodium where it needs to be, and go for something more like 40-50% protein, 30% carb, 20-30% fat. You will probably want to adopt the sort of diet that many bodybuilders use for "bulking." Google it - there's lots of meal plans out there.
• Don't go crazy on the free water. Make at least half of your fluid intake come from fluids that contain electrolytes, and if you need to cut fluids for any reason you should cut free water first. I found this funny. All the other doctors I've been seeing have been praising me for drinking so much water. When I told this doctor how much I drink, he immediately declared it too much because of how it could be lowering the electrolytes in my body and reducing my available fluid volume.
• With time and proactive self-management, some POTS patients can be effectively "cured." However, even if you get to a point that your POTS appears to be gone you must remember that any illness or surgery is likely to bring it back.
• Deconditioning is not a reference to muscular strength and tone. When we talk about deconditioning in POTS, it's really autonomic deconditioning that's happening. Your body must experience the effects of upright motion against gravity for your autonomic system to be healthy and responsive. This is why at some point your exercise plan needs to involve seated rather than lying or inverted exercises, and you should aim to reintroduce upright exercises like walking. This should, of course, be done gradually and carefully. However, if you haven't thought of this as a goal for yourself, you probably should.

We spent a fair chunk of time talking about the drug I'm on, Mestinon. I owe you more info about it.

On The Road Again!

Hey, there, POTSies! I'm on another sabbatical to the Mayo Clinic in Rochester, MN. I'm here for a week to attend their Fibormyalgia/Chronic Fatigue Clinic. Sound like a mix-up in the scheduling department? It's actually not. Mayo Clinic regards FM, CFS and POTS as related disorders with similar, symptom targeted treatment. This Clinic is technically aimed at FM and CFS, but many POTS patients attend as well and find it helpful.

While I'm here, I'm also going to get in with the Autonomic Neurologist, Cardiac Physiologist, Biofeedback and Psychology folks. LOTS going on and I've just started. I'm planning to share some of the fun stuff I'm learning and doing with all of y'all.

Let me know if you have any specific questions as things go on. I'm happy to bare my (irregular) heart.

GF Recipe! Portabella "Pizzas"

I used to love pizza. In fact, our family used to have Pizza Friday every Friday night. We'd go to a local pizza joint and I'd join the rest of the family at the trough. This was before I knew I had Celiac, and man has it changed things. Can I get a gluten free pizza? Yeah, I can... but it's not the same. For one thing, it's more expensive. For another thing, the texture is different and you have to get it as a thin crust. It's just different.

Well, if I'm stuck with different then I'm gonna own it.

Here's a totally different option that is yummy and takes things in a different, classier direction than traditional pizza pies.

Portabella "Pizzas"

- 6 large portabella caps
- 1/2 C balsamic vinegar
- 1/4 C olive oil
- 1/4 C water
- 2 cloves garlic, chopped
- 4 roma tomatoes
- 1 ball of mozzarella cheese
- Fresh rosemary

Wash and dry the portabella caps and lay them in a shallow dish. Mix the vinegar, olive oil, water, garlic and any other seasonings you like and pour over the mushrooms. Cover with plastic wrap and refrigerate for one hour.
Slice the tomatoes and mozzarella cheese. You can prepare any other toppings you like, such as sausage, peppers, onions, etc.
Preheat the oven to 350 degrees. Spray a cookie sheet with non-stick coating. Take the mushroom caps out of the marinade and lay them on the sheet, bottom up. Lay the tomatoes and other topping in the mushroom cap and lay the mozzarella on top. Bake until the cheese is melted, about 10 minutes.

Enjoy!! This is a yummy meal that looks pretty on the plate. The marinade has great flavor - these portabellas would be great all on their own!

Fitness Training

So, you've started working on some light calisthenics and you feel ready to tackle something more "meaty." Great! Here's some ideas to get you moving...

Annoyed

I was talking with my hubby the other night and I realized that POTS is annoying. Yeah, I'm sure that all the other POTSies out there already knew this, but I wonder if anyone else shares my specific irritation.

I can't stand the fact that I can't stop thinking about it.

It's always in my face. When I pick up a piece of food, I have to check it out and read the label and do the math. Does it have enough sodium? How many carbs? Is it gluten free? Is it time to eat again?

I love going to the gym, but I hate that I don't get to CHOOSE to do it. I can't skip a day. It's not an option if I want to function. Going to the gym, like I said, is not the problem. It's the fact that I don't get to exercise a choice in the matter.

I don't like that I HAVE to do all this stuff. It makes me feel marked, like this silly disease is always in my face. Staring me down. And I have to spend constant effort on not being the first to blink.

Up and Downs

No matter what you do, there's going to be ups and downs in POTS. I'm definitely feeling a "down" right now. The past few days I've woken up just tired and drained. Still, I've gotten out of bed and made myself go to the gym. I'm so glad I've done this, because it made me feel better.

Oh my POTS compatriots... hang in there. Whatever you do, don't let this thing keep you down. Get out of bed, at least for 5 minutes at a whack. No matter how crappy you feel, force it to happen. I know, believe me, I know how horrible it feels and how getting up is the last damned thing you want to do. I know it deeply. But I can tell you I also know how much better I feel after moving around.

No matter how much of a horror show your workout is, make yourself get through it. Get out of bed, lay down on the floor and knock out crunches, hip thrusters and kneeling pushups. You can do it! I know you can!!!

Starting Easy... REALLY Easy

In September, I was hospitalized for four days while doctors tried to find my mystery ailment, which had recently become outright debilitating. When they kicked me out with no answers, I was about ready to brain someone, so I may not have been listening super great at that point. But one thing the neurologist said cut through my irritated fog - "Make sure you are exercising. You don't want to become deconditioned."

When you have full-blown POTS, the last thing on Earth you want to do is exercise. But it bugged me, probably because I used to be a competitive 5k runner (ok, maybe I was the only one who viewed me as competition) and I felt like she was calling me weak or out of shape. There was a time that I spent a full 45 minutes on the treadmill at an 8-minute pace. Deconditioned? I'll show you deconditioned.

Hip Thrusters.

In the beginning, all I did was roll out of bed onto the floor and perform a small set of calisthenics. That's it! I started off with 25 crunches, 25 hip thrusters and 5 pushups. Then, I crawled back into bed.

Pushups can be performed on your knees.

At first, I did that once a day. Then I started doing it twice a day. Then three times. A great way to build overall endurance is to use shorter bursts of tolerable activity. So I did that every single day - three short sessions of calisthenics.

Over time, my endurance grew. My sessions grew, too. I added on more crunches. I brought in some simple quad extensions, squats, calf raises, side lying leg lifts, flutter kicks and "Supermans" for my back. I started setting a timer on my phone and making myself keep exercising for 15 minutes, rotating between sets of different activities.

Do NOT put your hands behind your head!

After about 2 months I was able, ready and willing to start hitting the gym for cardio and weight training. But it started small - very, very small.

So even if you feel terrible, try it. If you have tried other exercise approaches and they just didn't help, give this a shot. Start easy, build up slowly. Get down on the floor and do 25 crunches, 25 hip thrusters and 5 pushups. Try to do this 3 times a day, a few hours apart. See how you feel in a few weeks. If you stick with it, I'm guessing you will feel a difference.

POTS Exercise - General Thoughts

I'm not the first person to tackle this subject. That much I know is true.

It seems to be generally accepted that exercise is an effective way of controlling the symptoms of POTS. In my experience, the guidance coming from the medical professionals is fairly slim. I was told "work out daily, build gradually, start off recumbent" and that was about it.

I know there is a certain doctor who has a very detailed POTS exercise protocol. I have heard that some people have good results using it. But after that, the details are sketchy as all get out. I understand that the original exercise study was conducted in 2011, and I believe a second study is still in process. Details of the current program are not being released during the study, and past participants signed confidentiality agreements. So the only way to get his exercise plan is to sign up for the study. Soooo... it's great that someone is working on this, but not much help to me right now.

POTS patients need clear guidance, a plan, something simple and attainable. Something safe and, dare I even breathe it, maybe even free. I've seen a few people who have shared general guidelines they were given, but they all seem to start a bit further out (in terms of exertion) than the more extreme cases would be able to handle. No, I'm not a professional. However, I have access to a few. I cannot claim a study or any sort of research, but I can share what has been working for me. There's nothing stopping me from doing that much.

So I'm going to be delving into my own exercise regimen. I'm going to share the opinions of the doctors who are treating me, what they think of my approach. I'm also going to bring in thoughts from a personal trainer who is a good friend of mine, just to get a sports medicine sort of look at things. And, most importantly, I'm going to tell you what has definitely been working for me. Because I can honestly say that exercise has turned the tide for me, inactivity has heralded my worst episodes, and from where I started (early September was my darkest hour) to where I am today is a total 180.

Turkey Day Wrap-up

I hope everyone had a fantastic Thanksgiving! I spent all day cooking (which I LUV to do) and a friend joined us at our table to give thanks for something so precious... health.

I find it hard to believe that I was able to participate in yesterday's festivities, because just two months ago I was bedridden. In September, I was hospitalized for four days, trying to figure out what was going on with me after going into the ER nearly catatonic. I'm truly grateful.

I've been trying to think of a way to share with you my exercise approach. It's what I desperately want to do, because I think it's the secret to my turnaround, but I'm stumbling on getting it out right. I promise to make that the focus of my next post.

POTS Swag: Water Bottles!

Drinking 4 Liters of water every day can become a logistical challenge for someone who's on the go a lot. And, let's be honest, the goal of treating POTS is to be on the go again, right? I've tried a few options for carrying enough water around, and I think I finally found something I like.

Flodrocort-o-Blues

In an effort to raise blood pressure, I've tried two medications so far. Midodrine was awful, but I'm starting to think Florinef is not much better. Aaaaaand.... rant!

Eating POTS

My POTS "diet" is a weird creature. I've had to change some basic things, and totally toss out some well-loved assumptions.  It's not anything established or proven over time, but I'm sharing it so you can learn from my experiences as I go.

An Overview of POTS Management

If you've been diagnosed with POTS, chances are you haven't gotten terribly clear guidance on what to do about it. That's because there isn't one clear way to handle it. Each person's individual treatment will be very different, based on factors like physical condition, severity of the syndrome, other ailments, lifestyle, etc. There are, however, some general areas of treatment that apply to everyone. Here's my summary of the broad categories.

Diagnosis: POTS, Continued

Perhaps you are wondering how a person even gets diagnosed with POTS. Here's part two of my story. For the first part of the story, take a look here. I'm just going to pick up the whole, sordid tale from where I left off.

Diagnosis: POTS

Like most POTSies, my story from health to illness to diagnosis is long and convoluted. My ongoing story of diagnosis to wellness is sure to be even longer, basically lasting the rest of my life. Here's the "Reader's Digest" version of how I became ill and figured out what was wrong, part one.

Diagnosis: Celiac

As a lifetime carb addict, I was never interested in the Gluten Free "thing." As friends embraced it for reasons I didn't fully understand, I began to question their sanity. What were they thinking? Life without bread bowls of soup? Endless breadsticks at Olive Garden? Heaping piles of pasta? Why would they want to live like that?