Dysautonomia Tracker

Sorry for the delays in posting but, as you may have suspected, I have not been feeling well AT ALL. While I am not excited about that, I am excited about a new website that I have discovered that features a "dysautonomia tracker" that allows you to track all of your symptoms on a daily basis. And this is not your average symptom tracker...this one was obviously made by someone who knows something about dysautonomia. It has a huge range of symptoms to choose from that include things like pupil size, temperature problems, sleep quality, dizziness, fainting, headaches, muscle pain, stomach problems, and more. Very exciting! It has been useful to be able to see how my symptoms change on a semi-daily basis and how my activity changes as well (ie push-crash cycle). There is also a forum available, and multiple other trackers including sleep, pain, CFS, and many others. I think that it is something that many of you will find useful! Here is an example of the types of things that you can enter into your tracker (this is an excerpt of a tracker made by helpme5889). There is also a graph feature so that you can see how your activity level has changed over the month.

Easy, Healthy Gourmet Meals?

I have often struggled over how to make meals that are healthy, easy, and taste good. Sound impossible? Not so my friends! I made this meal the other night and it is absolutely fab and majorly easy. One recipe is mostly done in the oven (which I find to be the easiest way to cook with dysautonomia...less time over a hot stove) and one is completely microwaved.

I may start adding an occasional easy recipe or 2 to the blog so that those of you who are ill know how to cook when you feel terrible all time. I have some tips that I have learned over the years too that I can share. I've definitely been using them lately, because I have been battling a terrible cold on top of my other illnesses. Hope to be able to post more frequently in the future.

Here are the recipes:

Seared Salmon

Salmon fillets (about 6oz each), skin removed

Whole grain mustard

2 Tbsp olive oil

Salt and Pepper

Preheat oven to 375. Season both sides of salmon fillets with salt and pepper. Spread some whole grain mustard onto one side of each fillet (the amount can vary based on how much you like mustard...I probably used like a tsp or so).

Heat oil in skillet that is oven safe over high heat until oil is glistening. Add salmon (mustard side up) and sear on 1 side for about 2 minutes. Then transfer skillet to oven (don't flip fish) and bake until cooked through, about 6 min.

Microwave-Steamed Garlic Green Beans (courtesy of Everyday Food)

1 lb green beans, stem ends removed

1 garlic clove, smashed

1 Tbsp butter, cut up (or can use olive oil instead)

1/4 cup water

course salt

Place beans, garlic, butter, and water into 2-2.5 qt shallow microwave safe dish with lid. Season with salt. Cover, and microwave on high until beans are crisp tender, 6-7 minutes. Stir, and pour off any excess liquid. Serves 4.

You can also use less beans, just decrease the other amounts proportionally and decrease the microwave time.

Add some microwave or leftover brown rice, and you have a complete meal! Super-nutritious and yummy too. Not something I make all the time (because I usually only have fresh salmon the day that I come home from grocery shopping), but I imagine that thawed salmon might work well too as long as you pat it dry before searing.

Supplements, oh my!

I know that there are many people who are not big fans of supplements, but I am not one of them; however, there was a time when I doubted that supplements were helpful or necessary. I started taking supplements a couple of years ago after becoming sick from dysautonomia, and I truly believe that they have made a big difference in how I feel on a day to day basis.

I believe that unless we eat a diet with no processed foods or refined sugars, it is likely that we are not meeting our daily requirements of vitamins and minerals...and that's just for healthy people, let alone those of us that are ill. If you are chronically ill, it is also likely that you require a higher amount of vitamins and minerals than a normal person just to feel moderately well. Ideally, you should get all of your vitamins and minerals from fruits, vegetables, and lean meats; however, that is certainly easier said than done when it comes to having a debilitating disease like dysautonomia.

So, I try to eat as healthily as I can (especially now that I have my magical Vitamix blender!), but since I can't always eat perfectly and also need more vitamins than I can take in from a healthy diet, I take supplements. Here is a list of some of the most important ones that I take, along with why I take them. I also have links to a medical site that gives more details about the supplements, their side effects, and drug reactions that they may have. Always check to make sure that any supplements you take do not interact with your medications.

Remember, none of what I tell you is meant as medical advice but is for informational purposes only. Do not change your medications or add supplements without contacting your doctor.

Multivitamin: A daily multivitamin ensures an adequate intake of nutrients that are not always present in the diet in optimal amounts. So...if you don't eat perfectly, you should take one.

B vitamins (B Complex): Very helpful to increase energy levels; Vitamins B1, B2, B3, and biotin participate in energy production, vitamin B6 is essential for metabolism, and vitamin B12 and folic acid are required for cell division.

Coenzyme Q-10: Increases energy and mental concentration; CoQ10 is essential for the production of ATP in mitochondria (therefore essential to creating energy); In addition, Mitochondrial diseases can sometimes be associated with dysautonomia, and can be helped with CoQ10 (see article on "Mito cocktail" or check out umdf.org). More about CoQ10

Vitamin D3: Often low in Americans, especially those with chronic illness that are not exposed to the sun frequently; some studies have found it to be helpful for pain relief as well. Your doctor can do a blood test to check if your levels are low (Mine was significantly low). More about Vit D

Magnesium: Mg is important for every organ in the body. Can decrease muscle spasms if you are low in Mg (muscle spasms are common in dysautonomia), may help with pain control and is essential for heart health. More about Mg

Omega-3 Fatty Acids: Essential to human health but cannot be manufactured by the body. For this reason, omega-3 fatty acids must be obtained from food. Studies have found that they may be helpful to lower the risk of heart disease, decrease inflammation, reduce depression, and be helpful for many other conditions. More about Omega 3 FA

Probiotics: Helpful for everything from balancing the GI tract to reducing yeast infections, probiotics can be very important. Having the proper balance of beneficial bacteria in your GI tract is essential to good health, and surprisingly easy to come by. More about Probiotics

NADH: (Enada NADH) NADH has been found to be helpful in increasing energy levels for people suffering from Chronic Fatigue Syndrome, as well as other diseases. One of my doctors recommended that I take it, and I truly believe that it has increased my energy levels. Research on NADH and CFS Treatment

I'm sure that there are many others out there that would be helpful, but these are the ones that I have had experience with. Please feel free to comment on this post if you have other supplements to recommend.

If you are going to take supplements, make sure that you buy brands that are high quality and do not contain fillers. You may have to pay a little bit more for them, but it is worth it to have a pure supplement that will actually help. There are currently not any regulations on supplements, so some supplements do not contain exactly what they say they contain and can be more harmful than helpful. Some of the brands that I have had luck with are Integrative Therapeutics, Pure Encapsulations, Nordic Naturals (fish oil), Douglas Laboratories, Nature's Way, Solgar, Pioneer, and Perque. There are many others out there, just be selective.

I hope that you all have found this info helpful and will be able to select the supplements that will work best for you. I wish you good health in this new year!

DINET Documentary

DINET, an essential organization for information on dysautonomia, has created a documentary about POTS that is now available for purchase. I haven't seen it yet, but I think it's important to give DINET our support regardless. Hopefully it will be a good tool for showing others what we go through day to day. If you're interested, be sure to check out this link and the clip below. Hope everyone had a wonderful holiday season!

When Blood Draws Go Bad...

Remind me to ALWAYS make them use a butterfly catheter to draw blood from now on!!!

Eating Healthy in a Dirty World

Everyone "knows" that a healthy diet is important for a healthy life. But how many of us really eat in a very healthy way? I know that over the years I have been guilty of having a severe sweet tooth, other people I know are addicted to fast food, others to white bread. Well, my hubby and I have finally been following an extremely healthy diet for several months now. We gave up all sugar, wheat, caffeine, dairy, eggs, and beef as a kind of "detox", and then have slowly added some of the foods back in (like eggs, whole grain breads, some dairy, and organic beef).

Torture, right? Well, it actually hasn't been as bad as it sounds. The first week SUCKS, but then you get more used to it and it's not quite as difficult as long as you plan ahead. It really made me realize that I was super addicted to wheat and sugar, while my husband is addicted to caffeine and fried foods. I was really able to stop my sugar cravings after the first week, and it's kind of nice not to be ruled by my cravings. Adam's energy has been much higher while on the diet (mine is not quite as simple, but I definitely feel cleaner).

That being said, I still don't think I'll be able to stay on a diet this strict forever, but I think it has been really good for us to do it. Hopefully, it will lead to us making better choices in the future for what and how to eat, and to try to keep our diets as "clean" as possible. I really do think that I have been feeling better while I've been on it...just less sluggish and heavy. Oh, and you also lose weight eating like this, which is a bonus! The diet we have been following is from the book Ultrametabolism by Dr. Mark Hyman. He is an MD, and has great recommendations on how to eat as well as what supplements to try to be able to correct any imbalances you may have. You can even download some of his book for free on his website. I highly recommend it! I hope that everyone tries to eat as healthy as they can and Good Luck!

Chronic fatigue syndrome linked to "cancer virus"

I wanted to share this article discussing a new study that links a "cancer" virus to CFS. The virus apparently was found in 2/3 of the people tested that had CFS versus about 8 out of 100 healthy people. In addition, some of the symptoms that can be caused by the virus overlap with the symptoms of Chronic fatigue syndrome. This has the potential to further our knowledge of the cause of CFS. Very interesting stuff!

Chronic fatigue syndrome linked to 'cancer virus' - health - 08 October 2009 - New Scientist

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