Tips and Tricks for Better Living
Anti-Dysautonomia Tricks of the Trade
SALT: It's the opposite of what we've been told our whole lives...that salt is bad for you. Well, not for us. We are prescribed by our doctors 5000-10000mg of salt a day!! Believe it or not, I had been placed on a LOW salt diet before my diagnosis...no wonder I got so sick! So, get used to everything you eat tasting like a salt block. Add salt to everything and liberally if you have POTS. Unfortunately, if you're one of us that have severe acid reflux symptoms, that can be exacerbated by too much salt, so you'll have to have the maximum amount you can stomach without causing severe GERD symptoms. Many of the fluids listed below also have a significant amount of salt in them, so they can help in this category as well. Many people try Thermotabs aka salt tablets, but I think that they are created to torture us! I took a couple of them, and found them to be painful, nausea inducing, and then didn't help at all. If you enjoy suffering, then definitely try them...:)
Fluids: You have to keep your fluid volume high and, to do that, you need to drink LOTS of fluids. Here are some of the ones that I have found to be helpful.
Pedialyte: my personal favorite for fighting dehydration. I find that when my symptoms are really bad, having a liter of pedialyte makes me feel worlds better, which the others can't seem to do. I highly recommend. You might want to try the plain flavor, but if you can't stomach it by itself, then try adding just a TINY bit of a crystal light packet to it to make it more palatable.
Ceralyte: nice for travel b/c it is in packet form and can be mixed with water wherever you are. Like all of the electrolyte mixes, it has to be used quickly. It is not the greatest tasting stuff (made from rice and tastes like it) but is great for freezing into ice cubes and adding to smoothies later or if you need electrolyte help when traveling.
Gatorade: super easy to get and cheap, but super high sugar content and doesn't seem to work as well for me as the other mixes. If you don't mind drinking gallons of the stuff, then it is probably helpful, but I tend to have it only occasionally because it is so sweet and not as effective for me. The same goes for powerade and similar drinks (although I haven't tried propel).
Water (of course): I drink close to 3 L a day of the stuff and (literally) can't live without it. It is a requirement for all of us. Some people say that 2 L is adequate, but each person has to do what feels best for them. Carry it or another liquid with you at all times and if a major attack of POTS is coming on, down about 16oz fast and that might help stem the tide.
Homemade Electrolyte Mix: 1 qt water, 2 Tbsp honey, 1/4 tsp salt, 1/4 tsp baking soda. Combine until dissolved. Will last in fridge up to 24 hrs only. Great if you're in a pinch and dehydrated. Doesn't taste as good as some of the name brands, but not bad.
Countermaneuvers: I find it helpful to cross your legs or flex your thigh and calf muscles while standing if you are having an increase in symptoms, to lean forward onto a surface, or to walk in place. Others listed by dinet.org include sitting in a low chair, sitting in the knee to chest position and leaning forward with your hands on your knees when sitting and tightening the buttocks. These may increase the amount of time that you can remain upright, but they are usually only temporarily helpful.
Compression stockings: These can be really helpful for a lot of POTSies by combating the pooling of blood that can take place in the legs. 30-40mm Hg compression is usually needed to see any results and often need to be waist high; these can be prescribed by your doctor.
Pace yourself: Pacing is extremely important to prevent exhausting yourself for several days after a period of activity. By doing small amounts at a time, and frequently resting, you can prevent or reduce the number of days that you are super sick and unable to move. There is a good summary of how to pace yourself (this one is for fibromyalgia and CFS, but the principles are the same) at about.com that is worth checking out.
Frequent small meals: Large meals can cause too much blood to be diverted to the abdomen, and can increase symptoms in many people with dysautonomia; so, eating frequent small meals can help prevent these symptoms, and also helps to keep blood glucose levels stable throughout the day to increase energy.
Elevating the head of the bed: Doctors frequently recommend elevating your head at least 6 inches because it can help increase overall blood volume; It can also help with the frequent GERD that many of us deal with daily.
Exercise: even small amounts of exercise can make a difference (I know how hard this can be). Try not to allow yourself to get overly debilitated by staying in bed. It's very important to get up frequently, even for short periods just to keep your body at work. Many people find that exercising for 5 min increments each day makes a significant difference in how they feel. Resistance training, especially of the legs, can also be helpful over time.
Sitting in the shower: try using a shower seat when taking a shower...it can help reduce the risk or feeling that you are going to faint. And I can tell you from personal experience that it is NOT fun to faint in the shower! Also, taking a lukewarm shower can help reduce dizziness and lightheaded-ness during the shower.
I'm sure that I have managed to miss a bunch of helpful techniques, but this should at least be a good starting point. If I think of more things, I will add them to the blog in the future. If I've missed any helpful techniques, please comment on this post so that everyone can benefit from your discovery. Good luck to all of you in managing your POTS! :)
The Essential Chronic Gift List
Wondering what to get your chronically ill friend or relative? Here's a list of items that I have found to be very useful over the years and would recommend to anyone with a chronic condition (especially, but not limited to, dysautonomia and POTS). So this is a list not just for gifts, but for general living everyday, all year. fyi, all the links are not to actual sites or products I have necessarily used, but they are similar to those that I have at home.
SmartWool Socks: perfect for the winter for those of us with Raynaud's phenomenon or just cold feet in general. These are the only socks I have found that can keep your feet warm in almost any situation (although I must admit I have never warn them in the Arctic...)
Cute pillboxes: None of us enjoys carrying loads of pills around with us wherever we go, but if it has to be done, it may as well be done with style!
Klean Kanteen Stainless Steel Water Bottles: Since we POTSies must have water with us at ALL times, why not carry a permanent water bottle with you instead of plastic?
Seat cane: I use one from Magellan's that is super lightweight and indispensable for me. A must for any time you are going to the grocery store or shopping or even going on a short walk outside so that you have an instant seat when your heart rate gets too high.
Extended Height Rolling Stool: I use mine every day in the kitchen. You really need to measure your countertops to make sure that you get one that rises high enough to be useful (mine is 30"). I use it anytime I am in the kitchen chopping, mixing or washing vegetables, and if I need to go to a different part of the kitchen, I can simply roll over there rather than walking.
Shower chair: not the most glamorous of items, but an absolute must for POTSies who have a risk of fainting and getting extremely dizzy in the shower.
Arthritis Gloves by Imak: Nice for when the joints in your fingers feel swollen and on fire. These are the best ones that I have tried.
Cotton Bandanas: I have to use these all the time to manage my temperature fluctuations associated with my ANS dysregulation. These help to cool you down fast and get your hair off of your neck when you are having a crazy hot flash for no reason. Really any scarf will do, these are just examples.
Personal fan: Great to carry in your purse in the summer so that any hot flashes can be stopped in their tracks. Or, keep on on your side table during the summer...there are actually some nice looking ones out there now from Vornado.
Support hose: can be helpful with blood pooling in the legs associated with POTS
Neck pillow: Very useful for the car or airplane to keep yourself more relaxed and less likely to have muscle spasms.
Knee braces: If you have hypermobile joints, knee braces can be essential for days when your knees are really acting up. Wrist and elbow braces can also be helpful.
Blood Pressure Monitor: This one is fairly accurate, syncs up to your computer, and is actually nice looking so you can keep it out.
Journal/ sketchbook</a>: a nice journal (for the writing inclined) or sketchbook (for the artistic types) can be a great outlet for anyone with a chronic disease.
crocs Mammoth Clog: :these are great to keep your toes nice and warm during the holidays. Super comfy.
Tinted glasses/ pale sunglasses: Very useful for photophobia associated with dysautonomia; it can be very helpful when in a store with fluorescent lights.
Medical books: Books about the conditions that we have can be really helpful in fine tuning our treatments, or even to find new ways of coping with our diseases. See the list on the lower right of my blog to see some of the books that I find helpful.
This is just a partial list of things that people disabled with chronic illnesses might enjoy receiving. Other great gifts include driving them to appointments, making meals for them, helping to run errands, etc. Anything thoughtful that you do will be very much appreciated by them.
I'm sure that I'll think of more things that would be useful for chronically ill people. I'll add more items in later posts as I think of them. Have a wonderful holiday season and I wish you all good health in the year to come!!
Digestive upset can be a common problem for people with dysautonomia. I have found that ginger can sometimes help with digestion and ease discomfort. There are teas that can be purchased from Traditional Medicinals (ginger tea) or Yogi tea (lemon ginger). The TM tea is very effective but strong tasting; the Yogi tea is much more pleasant to drink, but may be slightly less effective. Below you will also find a recipe for homemade ginger tea
5 cups water
1 piece (6 inches) ginger, sliced into 1/4 inch slices
1 Tablespoon honey
Simmer water and ginger for 10-15 minutes, until desired strength (you may want it less strong to start with). Remove from heat and stir in honey. Feel free to add more honey to taste. If you make a stronger version, you can keep it on hand in the fridge and add hot water to it directly to make a tea when you need it.