Puppies and POTS

I hope everyone had a wonderful holiday season, and are not having too much trouble recovering from all of the activity. I also hope you tried not to overdo it so much that you can barely move now!

I wanted to apologize for how few posts I have put up over the past few months. Things have been a little tough in my neck of the woods, with many serious illnesses in my nuclear family that we have all been struggling with. I keep telling them, that I’M the only one that’s allowed to be this sick!! Hopefully 2011 will be a much better year for us all.

In the spirit of happy new beginnings, I want to share the new addition to my household: our new puppy, Loki! Since he is named after the Norse God of Mischief, you get a little idea into his personality… He’s a very sweet boy though, but he does like to torture our adult dog a little bit. And, if you were wondering, POTS and a new puppy are NOT mixing so well! I don’t think I completely thought things through when we jumped in with both feet, but I’m finally getting the hang of it. I am certainly getting the exercise that has been recommended for me since I have to take him out every hour! It was wonderful to have a little break over the holidays when there were 4 of us instead of just 1 to take him out during the day. I think the black circles under my eyes have finally faded a little with my increased sleep time over the holidays!

Here’s a picture of our new little devil! Isn’t he cute?

Okay, I know I’ve said it before, but this time I hope to be able to do it…I plan to post more frequently in the upcoming new year!

Best wishes to you all for a new season of health and happiness!

D is for Brain Fog

Sorry for the delay in posting, but there have been some serious diseases in my family (for once not related to me), so I’ve been very busy and stressed dealing with that and haven’t been able to work on email/web.

So, on a lighter note, I have a great story about the effects of POTS on the brain. We all know that “Brain Fog” can be ever present in our daily lives.  This is a perfect example of a funny (yet kind of pathetic) story about brain fog .

I was recently visiting my in-laws and playing a game called "Scattergories”.  For those of you that have never heard of this game, basically you are given a list of categories and then assigned a letter.  You then have to fill in the categories using only words that start with the assigned letter.

The letter is D.  The keyword is “disease”.  You have 60 seconds.  How many can you come up with?  For me, NONE.  So hmmm, what did I forget?  Maybe that the MAIN DISEASE I have STARTS with a D??  Hello, Dysautonomia!  Wow, that was really bad.  My family decided to give me a point for it anyway to discount the brain fog!

Ugh, I miss my brain sometimes. 

Hooray, Flip Flop by the FDA!

According to The New York Times, the FDA has reconsidered its decision to remove midodrine (ProAmatine) from the market due to the many complaints received by POTS patients like us that find it necessary for everyday living. The FDA has backtracked from it's original decision, and will now allow midodrine to continue to be sold.(YAY!) Finally, the chronically ill are listened to by a government agency…that must be some kind of record! Good news all around.

Please see the link below for the full article from The New York Times.

F.D.A. Backtracks and Returns Drug to Market

FDA Proposes Withdrawal of Low Blood Pressure Drug

This is really scary. I, along with many other POTS patients, rely upon midodrine (proAmatine) to keep my blood pressure at a high enough level that I can stand for short periods and work around the house. The FDA is proposing that they take this drug off the market because studies that verify the clinical benefit of the drug have not been done. I for one can attest to the fact that it is very helpful for many POTS patients. I hope that they reconsider this action and keep this drug available for those of us that find it to be helpful. The press release from the FDA is linked below if you are interested in reading it.

FDA Proposes Withdrawal of Low Blood Pressure Drug

Keep your fingers crossed that they change their minds on this one.

Summertime...and the living is NOT easy!

Ah, Summer...brings back dreams of running wild as a child, swimming, and, oh yeah, fainting in public!

It's lovely to feel like a 60 year old woman in the throws of menopause, isn't it? Not so much. So I have a few tips and tricks that have helped me over the years. I still have a lot of trouble during the whole summer, and have to spend most of my time indoors; but, at least these can keep you from fainting and might make your days a little bit better.

Fans: It can be helpful to have a fan in your house nearby so that you can cool off quickly during "hot flashes". I also carry a tiny hand fan in my purse for "emergency" overheating.

Cooling Neck Wraps: These are cool neck ties that contain crystals that absorb water when submerged for about 30 min, then slowly release it to keep you cool. They are great when you are more concerned about staying cool and keeping from passing out than getting your collar a bit wet. Best for outdoor activities.

Head scarves: I find that my hair can be a real problem for me when I am overheating and anything I can do to get it off of my neck is helpful. Head scarves are nice because they keep the hair completely off of your neck and do not give you a migraine like having your hair in a ponytail can (and, yes, the cheap ones work just fine).

HATS, hats and more hats: a baseball hat or similar style is helpful for everyday shade (shopping, etc). Sun hats are essential for any long exposure to the sun (at the beach, a picnic, etc). I wear a hat pretty much any time that I'm going to be outside for more than 5 minutes!

Scarves: My friend (and fellow POTSie) Ashleigh taught me all about the benefits of scarves. You may ask: "um, it's HOT, why would I use a scarf?" Well, it can be helpful to use a lightweight scarf (i like jersey) to protect your skin if you get overheated (and have skin as pale as a ghost like yours truly), or to use when you change from the outside hot weather to the inside freezing temps. It's an absolutely essential tool for all seasons, just pick scarves that are heavier or lighter based on the temp. I also think it's important to pick really big scarves that fold up small so that you can wear them with any outfit as an accent, but then fold them out like a shawl to cover shoulders if you need it. Luckily, they're also in style now so you can often find them for cheap at places like Old Navy, Target, etc.

Layers: We all know how having dysautonomia means having no control over your body temperature. It can be so maddening to be overheating like crazy just because you had a hot drink, or freezing because you're near the air conditioning unit. One of the best ways to deal with these temperature fluctuations all year is to dress in lots of layers: short sleeve or tank top, scarf, cardigan, jacket depending on the outdoor temp (ie don't wear a jacket in 90 degree weather). This system has been helpful for me in controlling some of the temp changes.

Stay-dry clothing: These lightweight, exercise clothes can be helpful if you are overheating consistently and want to stay cool and dry.

Sunglasses: with dysautonomia comes sensitivity to light...so I even wear light colored sunglasses inside around fluorescent lights, therefore they are even more important outside. Get a few pairs in different shades and sizes (big ones for when it's super bright, smaller and lighter for overcast days or inside).

Some people have also found Cooling Vests helpful if you have a severe problem with the heat or fainting. I have not personally used them, so I can't give any advice, but I know that some people (especially people with MS) find them to be very helpful.

I also think that it's important to stay in the shade if at all possible to extend the amount of time that you can handle being outside. Hats can help some, and if you'll be on the beach for any amount of time it's useful to be under an umbrella.

Sometimes, if I get super overheated, I might use those "fever reducing" ice pack gels that you can get for kids or some similar kind of gel ice pack. It's nice to put on your forehead or neck for a quick cool down. But, at least in my case, be careful not to do it for too long or you'll have to break out the blankets!

And of course, don't forget WATER and electrolyte drinks! The most important tip of all is to keep yourself well hydrated! I probably drink twice as much when I'm in the sun than I do on a regular day inside. Make sure you keep water with you at all times. Also, for more info on electrolyte drinks you can try go to this post.

Hope you guys found this list helpful! I'm sure that I have missed some things, so please feel free to add your tips in the comments section so that everyone can benefit from your advice. Good luck surviving the summer fellow POTSies!

Dysautonomia = Neurasthenia?

I'm sure many of you have read about a condition often seen in the 1800's called "neurasthenia" that many suspect may have been dysautonomia. It's an interesting idea that dysautonomia is not as new as many like to think.

This article from the Heart Disease Blog at about.com has a sympathetic view by a doctor that I thoroughly appreciate. I wish more doctors thought like this!

By Richard N. Fogoros, M.D., About.com Guide to Heart Disease

Yesterday's Neurasthenia, Today's Dysautonomia

Friday April 30, 2010

In the 19th century, there used to be a condition called neurasthenia. People (usually women) would find themselves suddenly unable to function due to a host of inexplicable symptoms, often including fatigue, weakness, strange pains, dizziness and passing out. Doctors attributed the condition to a "weak nervous system," or neurasthenia. These women were often confined to their beds, where they would either recover or, eventually, die. And while nobody knew what caused this condition, at least everyone - doctors and laymen alike - took it seriously.

Today, many doctors shake their heads in wonder at stories like this. How could a condition such as neurasthenia simply disappear?

The answer: It hasn't. And while patients today who experience these same symptoms aren't given that quaint old diagnosis, often they don't get any diagnosis at all. They are all too often written off as having "anxiety," or some other form of, well, weakness of character, that absolves the doctor of having to try to do anything about their problem, or even to think about it very much.

At least in the 19th century, patients with dysautonomia were taken seriously, and were treated by their doctors with respect and sympathy.

Read here about dysautonomia, how to tell if you might have it, and what can be done about it.

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Well said Dr. Fogoros!

I'm a Fabulous Sugar Doll Blogger!

Special thanks to Miranda Powell for giving me the Fabulous Sugar Doll Blogger Award! I feel honored to be included in this award. Miranda also has a dysautonomia blog called "Dysautonomia: My Journey, My Battle, My Victory, My Life". She is able to keep upbeat while dealing with a disease as difficult as dysautonomia, and is an inspiration to many others. Keep up the great work Miranda!

In accepting this award, I agreed to list 10 things about me that you probably don't know.

1) I married my high school sweetheart. We have known each other since we were 12, and have been happily married for 10 years. He's the best! :)

2) I love horror movies. Even though they tend to screw with my heart rate, I can't resist them. Probably not the best idea, but sometimes you just need to do something fun!

3) I am fully obsessed with cupcakes. Although I very rarely allow myself to have them, they are my favorite!

4) I LOVE reading books...all kinds. My husband calls me a "book garbage disposal".

5) I taught myself to knit and crochet off of the Internet during my illness.

6) I really enjoy painting and drawing. I flip flopped between being and artist or a vet when I was younger. Now whenever I'm feeling up to it, I try to create some kind of artwork.

7) I like baking when I feel up to it (not so often I admit), but I try to make healthier versions so that I can feel a little less guilty (see number 3).

8) My dogs are my children. I love them to pieces!

9) I love the beach. I really think that I feel better when I am there. Whether it is the "ions" or just that I can relax there, who knows...but it's a great place to go. Hmmm, now I have to figure out when I can go there...

10) Someday I plan to have a big yard so that I can get GOATS. They are some of my favorite animals. My husband says he doesn't want them...but he will learn that he does!

So those are 10 things you didn't know about me! Now you're all going to go out and get a goat, right?

I also have the privilege of passing on this award to several other bloggers that I think are deserving.

Elisabeth at POTS and OI Recovery

Danielle at My Life with Ehlers-Danlos

Jane at Experience Janism

Michelle at Living with Bob (again)

The group at The Dysautonomia Connection (which does have multiple men associated with it, but I'm sure they won't be too offended to have a Sugar Doll award!)

Great blogs guys and gals!

Fall Risk!!

Okay, I just had to share this jewel with you guys... You know that you have problems when they make you wear one of these bracelets when you go to the doctor! Pretty funny.

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!