Dysautonomia awareness is rather poor in the medical community despite its widespread impact on people around the world.  This results in people going years without a diagnosis, and when they finally have one their doctors don’t know what to do.  That is why it is extremely important to find a doctor who is a specialist in Dysautonomia.  Having a doctor that understands what you are going through will relieve a lot of stress, help you recover faster, and get you back into a normal life.

Right now there are two actual Dysautonomia Centers, one at Vanderbilt and the other at the NYU Langone Medical Center.  These centers are dedicated specifically to studying Dysautonomia.  However, that doesn’t mean there are not numerous other specialists out there.  Dr. Julian Stewart of the New York Medical Center, Dr. Blair P. Grubb of the University of Toledo Medical Center, and Dr. Phillip A. Low/ Dr. Philip R. Fischer of Mayo Clinic Minnesota have all been leading the charge in Dysautonomia research over the past years.

Now what if those physicians are too backed up with patients or are too far away?  In your battle with Dysautonomia, you don’t want to be dealing with a doctor who doesn’t understand your symptoms for too long nor do you want to deal with the stress of a long trip.  Thankfully those are only the top dogs in Dysautonomia research and treatment.  There are many specialists throughout the world.  Check out these lists to help find someone near you (Dinet list, NDRF list).  In addition, feel free to leave your recommendations for doctors that have helped you in your battle with Dysautonomia!

-Tyler

I’ve been interested in finding a form of massage therapy that works for Dysautonomia for a long time.  Massages are known to lower stress, increase ANS function, and help raise serotonin levels which means an easier nights rest (sounds good to me!).  While being an alternative treatment, massage therapy is  more mainstream than reiki or acupuncture, which makes me feel more comfortable researching and evaluating its potential affects.

After looking through numerous online forums there is a definite pattern among Dysautonomia patients and massage treatments.  The majority that have “deep” massage treatments come out feeling worse than ever!  This is because massage therapy dilates blood vessels temporarily lowering your blood pressure and heart rate.  “Deep” massages exacerbate these symptoms and getting up quickly after a massage ensures a bad situation.  In addition, people who have their massages with hot stones or on a heated massage table normally feel even worse.  Use common sense, heat intolerance causes symptoms to increase so don’t use heat.

Now on the otherhand people who use “light” massages have reported feeling much better for up to a few weeks following their massage.  There is one form of massage known as the “Bowen Technique“, which involves gentle rubbing.  Scientific studies have shown that the Bowen Technique has provided almost definitive results for people with Fibromyalgia.  Effects found from a study included better sleep, better balance, and less dizziness which lasted for several days.  All which are great benefits for someone with Dysautonomia!

Massages can definitely be a great way to help you relax and temporarily cope with insomnia.  When given a light massage, such as something similar to the Bowen Technique, there may even be benefits such as increased ANS function and blood flow.  However, if your considering a massage stay away from traditional “deep” massages and avoid heated massages.  Taking these precautions could allow massages to be an alternative treatment worth persuing in your battle with Dysautonomia.

-Tyler

Exercising with Dysautonomia can be extremely difficult.  While it may have benefits in the long run, the fact is that it will probably make you feel worse initially.  I’ve talked about exercising with Dysautonomia before, but I really wanted to explore the possibilites of yoga. So here we go!

The word yoga means “union” in Sanksrit, the language of old school India where yoga was born.  To my surprise yoga is not just physical positions or stretching.  Yoga actually consists of eight “limbs”  which focus on spiritual and mental well being, with Asana being the only branch focused on physical activity.  Asana yoga is known to focus on the health of the spine which houses the nervous system.  When you strengthen the spine, circulation is increased and nerves receive a healthy supply of oxygen.  Sounds great for orthostatic intolerance!  Not to mention asana exercises affect the endocrine system (glands and hormones), and is known to help with thyroid conditions sometimes associated with Dysautonomia.

Tackling the other seven different categories seems a little overwhelming, but according the the Sivananda Yoga Vedanta Centres there are five different categories that should be focused on.  These categories include proper exercise, breathing, relaxation, diet, and meditation.  On the Sivananda Yoga Vedanta Centres’ website they include how to achieve these five categories and a basic exercise routine.  They also teach you how to breath and relax for doing the exercises and achieving a sense of balance.

If your able, definitely give yoga a try for your Dysautonomia symptoms.  Remember as always when your exercising to take it easy and not over-do-it.  Listen to your body!  I’m going to start up this routine and see how it helps!

-Tyler

I read a lot blogs about CFS and Fibromyalgia.  While they are specific to the central nervous system, CFS and Fibromyalgia are much more “popular” disorders with many of their symptoms being similar to Dysautonomia.  By reading their blogs and articles I can often find leads into methods of coping with Dysautonomia.  This blog post on about.com really grabbed my attention about possible use of green tea to help cope with dysfunction of the autonomic nervous system.

Green tea has been consumed in China for over 4000 years and is widely considered to have tremendous healing affects from preventing cancer to treating multiple sclerosis.  Green tea comes from the Camellia sinensis plant, just like oolong and black teas, however green tea leaves are steamed rather than fermented which allows it to retain much more of its healthy chemicals.  In other words, if your going to drink tea for health purposes, stick with green.  You will be getting a lot more bang for your buck.

Now what is in green tea which makes it so helpful?  First of all epigallocatechin (EGCG) is a robust anti-oxidant that helps prevent growth of cancer cells and can even kill cancer cells.  It is even known for lowering LDL levels and preventing blood clots.  Green tea contains theanine, an amino acid known to increase dopamine levels, a neurotransmitter that helps regulate movement, balance, physical energy thinking and short-term memory.  Dopamine also helps increase norepinephrine, a neurotransmitter, which is secreted by the adrenal gland and works to give you sudden energy in response to stress (or the “fight or flight” mechanism, a key component of the autonomic nervous system).  Not to mention theanine is known to reduce mental and physical stress, and improve cognitive function when taken with caffeine which is found in green tea.

There is only one, yes only one, proven setback from drinking green tea and that is the fact it contains caffeine.  Caffeine increases heart rate and is a diuretic which doesn’t help with frequent urination.  However a cup of green tea has less caffeine than a cup of coffee, and the caffeine raising the heart rate may be a benefit in people with bradycardia.  I drank four cups today (after averaging out the studies I found 2-4 cups should be the best benefit) and I feel like it hasn’t been nearly as bad a diuretic as a soda or coffee.  My heart rate is high, but no higher than usual.  I can’t seem to find anything too negative about it, so I think I am going to continue drinking it this week and see how it makes me feel.  There are decaffenated versions of green tea, but they are considered to be drastically less effective in terms of health benefits.  Give green tea a try, if it makes your heart rate or blood pressure too high stop drinking it, otherwise the health benefits make it an addition to your diet that definitely can’t hurt!

-Tyler

It’s something most people with Dysautonomia have to deal with, and unfortunately extremely hard to manage.  Either you have difficulty urinating or you have to go all the time.  I originally started out having difficulty but now it seems as if everything that comes in, comes right out.  This can make staying hydrated to raise your blood pressure very difficult.

Over these past couple years my frequent urination hasn’t been too bothersome, it has been rather under control as I have a high sodium diet and drink lots of Gatorade.  It has even served as a convenient break from the occasional three hour long Latin class (no offense Mrs. Dollings), but lately this symptom has really been bothering me.  I missed part of “Up” in 3d, got stuck in a graduation ceremony, and have had to go out of my way to make pit stops when driving.

I have read time after time on Dysautonomia websites about drinking Gatorade, and eating salty foods which help with fluid retention, but what else?  Along the lines of salty foods, some doctors suggest taking salt tablets such as thermotabs with your meals.  Salt tabs can have some negative effects, so I delved a little deeper on the research front and found a couple other techniques.

Pelvic muscle exercises known as “Kegels” help increase your ability to hold it.  Some doctors recommend bladder training which involves not going for 10 minutes after you feel the need.  Drinking caffeine and carbonated beverages are known diuretics, and should be avoided.  There are medications and surgeries out there, but with the complications of Dysautonomia this is one symptom that is better suited for other less drastic options.  Hope one or more of these tips help make life a little easier!

-Tyler

I was putzing around the internet today looking for Dysautonomia news and couldn’t find a thing except for an interesting research article from Japan.  The article is about clinical guidelines for children with orthostatic dysregulation.  Everything seemed pretty solid until I hit the part which talked about treatments, “strategies of psychosocial intervention and psychotherapy.”  The strategies listed are assuming that Dysautonomia is caused by stress, a major misconception which is just one reason Dysautonomia awareness is need more now than ever.

A couple weeks ago I wrote a blog post about Neurasthenia, a disorder which is widely considered to be Dysautonomia.  Neurasthenia was developed as a diagnosis in the eighteen-hundreds and is attributed to be caused by stress.  While Neurasthenia is no longer a diagnosis in the United States, it is still used in many Asian countries.  This attributes to the issue and thought process of doctors in Asia that Dysautonomia is caused by stress.  This is far from the truth.  Stress definitely can make symptoms worse, but stress is not the cause.  Lack of labratory findings make it difficult for doctors to diagnose and treat in many cases, but it is generally accepted among Dysautonomia specialists that stress is not the leading cause of Dysautonomia or area to target treatment.

Mayo Clinic released a video a few months ago about how 1 in 100 adolescents suffer from a mild version of POTS.  Now why aren’t 1 in 100 adolescents going through the same battle we are?  Dr. Fischer explains that he believes POTS materializes in “high-achieving teens”.  They simply have the mild version of POTS, work really hard, and stress out their body to the point where it can’t take it anymore and breaks.  This is just another example of how stress can worsen symptoms, but at the same time not actually be the cause.

Last week a fan of 12 More Pages posted about how her daughter was having Dysautonomia symptoms but her doctor said it was all in her head.  After I first passed out doctors assumed everything was stress related.  Another fan wrote about how she had a stroke and doctors thought she was imagining things until they found a spot on her brain 6 years later.  These are only a few examples of how even doctors aren’t educated about Dysautonomia and its effects, and one of the reasons 12 More Pages is fighting hard to promote awareness.  By spreading awareness together we can prevent fellow Dysautonomia patients from going through the pain of misdiagnosis!  Ever been misdiagnosed or told it was all in your head?  Post your experience in the Discussion tab!

-Tyler