“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

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

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

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