August 6th, 2009
Dysautonomia symptoms are known to flair up with changes in weather and climate. As our Autonomic Nervous System controls our body temperature, sudden changes in climate can trigger a worsening in symptoms. In this blog we are going to tackle coping methods for different aspects of weather including heat and barometric pressure changes.
First things first, heat. Heat poses a huge issue for people with Dysautonomia especially in the summer months. Heat dilates blood vessels, so with people who have orthostatic intolerance it lowers their blood pressure even more and increases pooling.
In Virginia, its a sweltering 95 degrees plus and extremely humid all summer long. I gave up my hopes of being tan a long time ago, and pretty much avoid going outside. This is not the best strategy as sunlight provides our body’s with Vitamin D, and last summer when I avoided going outside nearly 100% my blood work showed a Vitamin D deficiency. Being outside for thirty minutes once-a-day in the morning is all it takes to keep your Vitamin D levels up, and even helps you fall asleep at night.
Now if you must spend a lot of time outside and have difficulties, drink a lot. Drinking lots of water helps increase blood volume and reduces the drop in blood pressure and pooling caused by heat. Another strategy would be to spend time in the pool, not only does water keep our body’s cool but water helps reduce the affects of gravity on our blood pressure. In addition, companies manufacture cooling vests which a lot of people have success with in extremely hot environments.
S0me people with Dysautonomia believe their symptoms worsen with barometric pressure changes that come along with storms. This is a much more difficult situation to deal with as you can’t actually completely avoid pressure changes, unlike heat. There are some tips out there regarding barometric pressure headaches though. These include taking your headache medication when you know a storm is coming to prevent symptoms and exercising which increases endorphins which can lessen the affects of headaches. Other techniques include walking by a water source and getting some fresh air.
Have any tips for dealing with weather changes? Post away!
-Tyler
Tags: autonomic nervous system, dysautonomia, postural orthostatic tachycardia syndrome, treatment, weather
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August 4th, 2009
The past few days have been rainy and gross in good ole’ Richmond, Virginia and I have been feeling a lot more tired than usual. I have been sleeping 12 hour nights only to wake up in the morning and watch food network in a recliner for eight hours. My first thoughts were I was probably overdoing it and my body just needed the rest, but today I feel great and guess what? The weather outside is great! I had never thought that weather had an affect on my symptoms, but a recent post on the facebook page inspired me to immediately investigate its potential affects on people with Dysautonomia.
I was looking around on Dysautonomia forums and noticed that most people tend to feel worse when a storm is coming in. So what could cause a storm to make someone with Dysautonomia feel worse?
Storms are normally associated with a Low Pressure front moving in. Low pressure makes your body feel as if it is at a higher elevation in terms of normal barometric (atmospheric) pressure. In certain people this change in barometric pressure can cause pain and migraines.
Achy joints are scientifically proven to be affected by low pressure moving in. There are nerve endings on joints that have receptors that are sensitive to pressure changes. When a low pressure front comes in, the pressure changes and people who are sensitive may have pain. However, the evidence regarding migraines and other symptoms are a lot less conclusive.
Regarding migraines in particular the evidence is all over the place. Some studies show definitive results that there is a correlation with pressure changes and migraines, others show definitively that there is no correlation. One theory supporting a connection suggests that a change in pressure brings about changes in oxygen levels, and the blood vessels try to compensate for lower oxygen levels and this causes a migraine. If this theory is true then there is definitely reason why someone with Dysautonomia would feel like their body is going haywire.
If anyone experiences their symptoms worsen with weather changes, leave your stories! Together we can make some connections! In addition, check out Weather Channels aches and pains forecast tool!
Hope everyone is feeling well,
-Tyler
Tags: autonomic nervous system, dysautonomia, postural orthostatic tachycardia syndrome, weather
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July 29th, 2009
Treating stress for Dysautonomia makes a lot of sense. The Autonomic Nervous System (ANS) controls our body’s reaction to stress, so naturally since our ANS does not function properly we are more susceptible to the negative reactions of stress. For me, my symptoms have never been worse than when I was dealing with the stress of applying to colleges, so I definitely see a correlation.
I was at the doctor once and I was suggested to try biofeedback. My doctor told me that it would help reduce stress, and by reducing stress I would be reducing my symptoms all around. Sounds great to me, but unfortunately I haven’t been able to find a biofeedback specialist so I’ve been poking around for other more practical treatments ever since.
I was flipping through tv channels the other day and saw “Patch Adams” was on TBS. The movie is based on the true story behind Doctor Patch Adams, a man that believes laughter is one of the most powerful medicines.
I decided to do some more research behind this doctor’s methods, and believe it or not laughter is scientifically proven to lower stress levels. Laughter reduces stress causing hormones cortisol and adrenaline while increasing health beneficial neurotransmitters and endorphins. Laughter provides both a physical and emotional stress release taking care of both categories of stress our body has to deal with. Not to mention laughing is just fun to do!
So when your up late at night trying to fight insomnia, maybe you should just give up the insomnia treatment techniques and watch your favorite late night show. Conan O’brien or David Letterman might just be your daily ticket to coping with stress. You can also watch loads of shows for free online at Hulu, making it easier than ever to get your laughter persciption filled. Aren’t a fan of tv? Try reading comics or just spending time with friends. Any moment that you can create to help make you laugh could help you feel better overall. In our cases a laugh a day may keep the doctor away.
Other treatments I’ve found that are supposed to help are Green Tea and Yoga (check out those links for the blog entries), but don’t expect to become a stress control master over night. I don’t think anyone can control their reaction to stress 100%. Well maybe Buddhist monks can, but I have no plans on moving to Nepal to learn their ancient ways.
Hope everyone is feeling well,
-Tyler
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July 28th, 2009
“Dysautonomia. Do I really have to spend the rest of my life in bed?” I was looking through the websites stats last night, and you can see keywords that people search when finding your website. Someone out there actually googled “Dysautonomia. Do I really have to spend the rest of my life in bed?” and found the 12 More Pages website. The wording used caught me completely off guard, but I think it encapsulates how so many of us with Dysautonomia feel.
I see a lot of hopelessness in that search phrase, but if you think about it the nature of Dysautonomia is hopelessness. Hopelessness might as well be a symptom. From your family and friends not understanding your disorder two years later to visiting doctor after doctor looking for answers to your life changing in front of your eyes, how are you supposed to be hopeful?
I had started a club at my school with 300 people in it, was an athlete, top student, and active volunteer. For me when my Dysautonomia worsened, I was almost instantly reduced to nothing. I could barely lift my hands to type on my computer let alone go to school. Now believe me I tried to stay positive. I wanted to keep the others around me protected, and heck I assumed I would be back in action in a few days. A few days turned into months into years.
Over those years I’ve lost many of my once good friends, I’ve lost the best years of high school, and have even lost hope. I’m not perfect and have broken down a few times. The stress of the pain I was causing my family when I could barely walk felt like it was going to nearly bring the world down around me.
Here I sit, almost two and a half years later since I started out with Dysautonomia more frustrated than ever. This past week I haven’t been feeling as well. After a few months of feeling better than ever, I could barely get out of bed in the morning. My insomnia was worse than ever, and I felt like everything was coming back. I even began to feel a little hopeless.
Now I’m not going to spin this around into a positive light. Frankly everyone out there has a right to feel hopeless. Dysautonomia is a ruthless and unpredictable disorder to cope with. Everyone has a right to feel beat.
However for me I still have a sense of hope, I hope that “Hope” itself will grow in the Dysautonomia community. While I couldn’t be more frustrated, seeing people come together to support each other means more than anything. Originally I started 12 More Pages just as a means of sharing the latest news and studies, a place where anyone could come and get the latest info without spending their precious energy scouring the internet. While this has caught on, I want to emphasize that my articles/research are not what makes 12 More Pages special. What makes 12 More Pages special is the members of the community. All of us with Dysautonomia, coming together and working hard to beat our disorder is truly inspiring. For me this is “hope” itself, and I can’t thank you all enough for your support of 12 More Pages.
-Tyler
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July 23rd, 2009
Over the past two and a half years, I’ve really noticed something. Despite being around me for over two and half years a lot of my friends still don’t seem to understand what Dysautonomia is and how devastating it is to our lives! AH! A ton of my friends even act like “little ms. ignorance” from one of my favorite videos on POTS by ChronicallyKyli on Youtube. Maybe it’s because Dysautonomia is such an intimidating word that they automatically assume its over their heads? Maybe it is because Dysautonomia is a so called “invisible illness”? I just don’t know…
When this whole ordeal started out, I came home from the hospital in a wheel chair and worked my way up to a cane as I recovered. These times were swell in terms of understanding. Whenever you are using a wheel chair or cane people automatically assume it’s something serious. That visual was all anyone needed. They didn’t understand Dysautonomia, heck I don’t think I understood Dysautonomia, but they knew I was in a wheel chair so it must be bad. Everyone was there for me.
Then I was off the cane and people seemed to slowly care less. I was no longer using a cane, so everything must be okay. When I had to explain to people that my blood pressure was dropping when I stood and my heart rate was high, they seemed to listen and understand. However, I’d get phone calls inviting me to go to the gym and box or go to a hot amusement park. I could barely get through a part day at school, but just because my friends saw me walking without a cane everything was dandy. At this point I even began to lose some friends just because I wasn’t able to keep up with the crowd.
This doesn’t mean no one understood. Some of my really good friends started to be able to tell when I was becoming pale. They noticed my brain fog and deteriorating sharpness. These events happening in front of them slowly began to paint a picture of how sick I really was.
For people I knew less well, I began using metaphors and (hopefully) basic descriptions.
-My heart rate is 120+ bpm while standing all the time. That’s how high yours is when you are exercising. For me, after going to school all day I am exhausted because my heart has been working as if I were running a marathon.
-You see my purple feet? That’s blood down there amigo. Blood that should be going to my brain. Less blood flow means less oxygen. Your brain needs oxygen to function. That’s why I may seem slow to think sometimes, and it’s also why you should stop cheating off my vocab test.
-Your Autonomic Nervous System controls the aspects of your body that you don’t think about. This includes blood pressure, heart rate, and sweat to name a few. I have difficulty sweating, my heart rate is high, and my blood pressure drops.
-Ever seen Chernobyl? That’s what my Autonomic Nervous System looks like.
From my experiences people definitely seem to understand Dysautonomia better with a visual. Anything from actually being really sick to a goofy metaphor works better than busting out a detailed medical description. Dysautonomia is definitely a tricky disorder, but with proper explanation and visual descriptions it shouldn’t be tricky to explain and convey the seriousness of the disorder. Because visuals tend to work well, we’re making an animated short that should be a fun way to show how Dysautonomia symptoms affect us, stay posted!
If you have any surefire ways of explaining Dysautonomia be sure to post them! Finding easy ways to help others understand this complex disorder is key to bettering our own situations and raising awareness!
-Tyler
Tags: autonomic dysfunction, autonomic neuropathy, dysautonomia, familial dysautonomia, fast heart rate, low heart rate, neurocardiogenic syncope, orthostatic intolerance, postural orthostatic tachycardia syndrome, POTS, slow heart rate, vasovagal syncope
Posted in Coping, Tyler's Journal | 2 Comments »
July 21st, 2009
Today I went out to lunch with my mom at PF Changs after my college physical exam, and I ordered hot green tea. The waiter immediately said, “Good choice, on a hot day like this hot drinks actually are absorbed by your body quicker rehydrating you faster!” Whoa whoa whoa… I had never heard anything like this before so I decided to do some research and see what the experts are saying regarding this topic. Hydration is a key component for most people living with Dysautonomia so why not have the best possible understanding of the subject?
First things first, why does drinking water help people with Dysautonomia? The autonomic nervous system (ANS) controls blood vessels which expand and contract to pump blood throughout our body. For people with Dysautonomia that have low blood pressure, water helps expand blood volume which makes it easier for our those blood vessels to pump the blood thus raising our blood pressure. Drinking large amounts of water can help with not only raising your blood pressure but lessening pooling in your lower extremeties.
Now what makes drinking water really tricky for people with Dysautonomia is that the ANS also controls urination and for many people their bodies tell them to urinate more making it tough for us to keep water inside.
So what are some proven ways to stay hydrated and increase your blood volume? One way is to drink consistently throughout the day, not excessively but don’t wait till your thirsty. Drink cold water, hot water is actually not absorbed faster than cold water according to studies at MIT (sorry PF Changs waiter). Increase your sodium consumption, sodium helps retain fluid. Some popular ways people with Dysautonomia increase their sodium consumption are through salt tablets and Gatorade.
Now don’t drink too much Gatorade, although Gatorade and sports drinks contain potassium and sodium which aid in fluid retention, they contain carbohydrates in the form of sugar to increase energy. This is not actually a bad thing in moderation except that a 24 ounce bottle of gatorade contains 11% daily value of carbohydrates. Any carbohydrate consumption over 7% daily value during a short period of time actually slows gastric emptying delaying fluid absorption in the body’s tissues. So if you drink Gatorade don’t drink too much at once, and spread your consumption throughout the day.
Gatorade’s large amount of carbohydrates in the form of sugar can be slightly off putting for some as well. 34 grams of sugar in a 24 ounce bottle is only 4 grams shy of a can of Coca-Cola. Camelbak makes a tablet, called Camelbak Elixir, that you can put in your water and has pretty much all the benefits of Gatorade with no sugar. I have never used this product so I can’t recommend it, but the lack of sugar, minimal calories, and subtle taste make the Lime flavored option seem like a potential substitute. However, at 26.99 for a 36 pack Camelbak Elixir is pricier than buying Gatorade powder or bottles.
Have any other tips for staying hydrated? Feel free to post them!
-Tyler
Posted in Coping, Tyler's Journal | 2 Comments »
July 18th, 2009
The idea of Dysautonomia striking after a vaccination has been on the back burner of my mind for as long as I can remember. I received shots of Candida virus into a particularly tough wart as a last resort, and boom two months later I passed out for the first time. The idea behind the shots were that they would invoke my immune system to fight off the Candida and then move onto the wart virus. There is no way to prove that the Candida injections caused my body to cause my autonomic neuropathy, or am I suggesting that Candida virus causes Dysautonomia. On the other hand there definitely seems to be a connection in some people with vaccinations and Dysautonomia.
This is extremely hard for me to talk about because as usual there is little information out there regarding Dysautonomia and vaccinations. The only similar connection I could find so far is where people develop Guillain-Barre syndrome following the influenza vaccine. Guillain-Barre is an autoimmune disorder that affects the peripheral nervous system. Dysautonomia can be caused by an autoimmune response, perhaps triggered by a vaccine. Other popular concerns out there over autoimmune responses from vaccines include Celiac Disease and Autism, but like Dysautonomia there is no proof that vaccines are the cause.
From looking at forums on Dysautonomia people tend to have really mixed reviews when it comes to vaccines. On the Dinet.org forum some people complained of feeling much worse in the weeks following their flu vaccines while others had no problem. Your reaction could be determined by how you got Dysautonomia in the first place. Perhaps if your predisposed to autoimmune reactions a vaccine would be more likely to cause you to crash?
This debate is raging on among my doctors now as I get ready for college and need my proper vaccinations. While some of my doctors say go for it, why risk getting Meningitis. Other doctors tell me its a sure bet for a massive relapse. Some doctors take great interest in my Candida injections as a cause, others think the autoimmune reaction was caused post viral. There really isn’t a clear cut answer when it comes to vaccinations, especially at this moment in time.
Anyone here have a bad reaction following a vaccine? Tell us the suspected cause of your Dysautonomia and your experiences with vaccinations. Maybe we can find some patterns so we can make educated guesses come time for our next vaccine!
Hope all is well!,
-Tyler
Posted in Tyler's Journal | 3 Comments »
July 15th, 2009
Insomnia affects a huge portion of the Dysautonomia community. While there are many sleep medications that doctors are willing to prescribe, they can leave you with a drowsy hangover the next morning. Not only do many leave you drowsy but some are notorious for complications. I took Ambien and felt like a zombie!
That’s why I decided to explore non drug treatments that are actually proven to work in 80% of people with insomnia in our new 12 More Pages Webisode.
http://www.youtube.com/watch?v=yMQ5YCI6TaU
However if sleep hygiene, progressive muscle relaxation, and herbal teas aren’t doing the trick there are actually even more behavioral techniques out there. Unfortunately, for these techniques you will need some formal training from your physician. For more behavior techniques and more great information check out About.com.
In regards to herbal tea, it doesn’t exactly knock me out. It does however make me drowsy and relaxed so its easier to fall asleep. For me it takes two cups of sleepytime extra to get an affect, three cups actually makes me drowsy the next day. I’d experiment between one and two cups depending on your body size and personal affects of valerian/other herbs on your system.
Hope this proves to be useful in your battle with Dysautonomia!
-Tyler
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July 9th, 2009
Hey everyone, hope all is well! It’s been a week, and I am finally back in reality after spending some time in the Cayman Islands. Despite being a little worried that my Dysautonomia would get in the way of me having a good time, everything turned out well. The plane rides actually had little to no affect on me, and despite the temperature being extremely hot I was able to manage by spending time in the pool and drinking plenty of water.
Yes its true, you probably shouldn’t push yourself when you are in an unfamiliar environment, but we are only human and you only live once. Grand Cayman has some of the best reefs in the world, I wasn’t sure how snorkeling would affect my system but I did it anyway. I will probably never be back there, and I did not want to miss out on seeing the island’s underwater beauty. The next day I slept for 12 hours and spent half my day in doors, but I hardly regret it.
Spending time in the water actually helped make me feel a little better. I have read about the benefits of water exercises for people with Dysautonomia but have never tried them. After spending time in the pool, I can personally attest that they are worth investigating. Circulation is definitely improved as water diminishes the affects of gravity.
The vacation on the whole was very relaxing. For those of you out there that may be worried, you must not let Dysautonomia keep you from enjoying your life. Depending on your current condition you may not be able to pull off a long trip, but getting out of the house and having a change of scenery is definitely rewarding. Listen to your body, know your limitations, and with the proper precautions you too should be able to have a great vacation this summer!
-Tyler
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July 1st, 2009
Tomorrow I am going on vacation! This is the first real vacation my family has taken since I passed out two and a half years ago. Needless to say we are all extremely excited! But with this excitement comes a few questions. We are flying so whats the affect of a pressurized cabin on someone with Dysautonomia? How am I going to stay cool on a hot island close to the equator? And most importantly what can I do to keep the stress of a new environment from making my symptoms worst?
First of all, I have to make it to the vacation location via airplane. According to Dinet.org an airplane is pressurized at 6,500 feet which is high enough to cause some Dysautonomia patients to hyperventilate. Not only that, but the air on a plane is among the driest in the world meaning its very easy to become dehydrated and the chance of pooling is increased. To deal with the dehydration one must drink a lot of water (even more than normal)! I’m loading up on Gatorade tomorrow and am having an excessively salty breakfast so I can prevent having to use the restroom every ten minutes during the flight! Pooling in the legs can be combated by wearing compression stockings and doing leg pumps while on the plane. In addition, people with pooling have a slightly greater chance of blood clots over a normal person. This is still a rare occurrence but can be prevented by simple leg pumps.
Once you make it to your vacation location you need to be really careful about pacing yourself. Vacations need to be looked at through different eyes for someone with Dysautonomia. While you can still have a great time and do some truly unique activities, one must listen to their body to prevent overdoing it. Taking the traditional approach to a vacation and going all out in excess will make your trip fun, but you will pay the price in the weeks following. Pacing myself will really help me deal with the heat as well. When I feel tired and orthostatic, I am going to go inside and recover with the help of my good friend air conditioning.
Hopefully by taking these precautions, not only myself but you all can arrive to your vacation destinations in a healthy state and return feeling relaxed and stress free! Please feel free to leave any tips you have to help deal with traveling and vacations!
Bon’ Voyage!
-Tyler
Posted in Coping, Tyler's Journal | 2 Comments »
