One of the causes of Dysautonomia is from the result of an autoimmune reaction.  This is basically when you have a virus and your immune system attacks the virus then continues to attack your autonomic nervous system.  This destruction of your autonomic nervous system is known as autonomic neuropathy.  My diagnosis has been acute autonomic neuropathy probably caused by an autoimmune response, although to prove this they must find an antibody that caused the autoimmune reaction and so far my doctor’s have found nothing.  Trust me I’ve had a lot of blood work!

While I may have had symptoms prior to passing out, they were very mild.  Doctors described my blood pressure as being so low that there was very little blood flow to my brain causing me to have a stroke.  Following that incident I was in the hospital with very little mobility and extremely low blood pressure to the point I couldn’t raise my head above a 45 degree angle.  This is when the doctor’s at MCV decided to give me intravenous immunoglobulin or IVIg.

I’m going to do my best to give a basic explanation of a really complex treatment so bear with me!  First of all your immune system produces antibodies to fight infection.  When you have an autoimmune disease, your body creates an abnormal antibody that attacks your body’s cells rather than infection.  IVIg is a plasma product made from approximately 20,000 blood donors and mixing it together.  The IVIg treatment floods your body with antibodies which make the abnormal antibodys inactive.

IVIg is known to be more effective if given during the first eighteen months of diagnosis.  I had mine in the hospital for a five day period when I was first diagnosed after my stroke.  I had extreme migraines from the treatment which is common side effect.  My migraines were so bad that they had to give me Morphine to soothe the pain.  After that I had 2 treatments, once a month following the first 5 day treatment. When I had my second and third treatments I had migraines again and had extreme flu like symptoms for about a week following each treatment.

Now do I think it helped me?  I’m not entirely sure.  I seemed to have my symptoms lessen to the extent I was able to move more.  I couldn’t walk still because I was so orthostatic, but I was definitely more mobile.  My mom, a nurse, believes that the treatment helped stop the autoimmune reaction and reverse the situation.  However, this was no miracle cure.  Two years later and I am still symptomatic.  I can’t recommend doing IVIg, but if your doctor suggests the treatment, if you are in bad enough condition and aren’t recovering it may be a worthwile route especially with recent studies showing its effectiveness.

-Tyler

Every time I have gone to the doctor they say that exercise will make you feel better in the long run and help your recovery time.  Easier said than done!  Exercising for someone with Dysautonomia can feel near impossible.  Physical therapists normally can’t take many Dysautonomia patients because of liability due to their symptoms, and many doctors can’t provide viable options.  So how do you exercise and does it actually help you in the long run.  The answer is very carefully, and for me exercise has made me feel 100 percent better.  Over 100 years ago a Neurasthenia study showed that a sedentary lifestyle worsens symptoms, so when you’re able exercise is one of the first treatments you should try pursuing.

The idea behind exercise is that it will make your leg muscles stronger ultimately allowing blood to be more easily pumped throughout your body.  So naturally start off with exercising your leg muscles.  When I first started exercising I had exercise bands that I used in bed because I couldn’t stand without being dizzy.  If you used to work out this can be an extremely boring option but keep with it.  They keep your muscles from turning to mush and definitely help prevent your symptoms from getting worse.  Check out these exercisesLying Theraband Leg Exercises

Then when I was finally able to walk around more my parents invested in a recumbent exercise bike.  These are a great idea because not only are you sitting down, but you have a heart rate monitor so you can make sure you are not overdoing it.  Not only can you monitor your heart rate but you can raise the difficulty settings as you gain ground making an exercise bike very dynamic.  When I ride my exercise bike, also known as “Lance Armstronging it”,  I do a number of different routines.  One day I will do it for a longer period of time on an easy resistance to build endurance, and other days I try to build strength by riding on a hard resistance for a short period of time.  When starting off  make sure you take it easy.  You will most likely feel bad after and may need to take a couple day break afterward.  I had to ride about 2 times a week for a couple months before I could stick to a steady schedule.

Other ideas include working out in the water.  I have not personally tried this but doctors have told me that your blood pressure does not fluctuate in water and it makes working out much easier.  Another avenue I have been investigating is yoga.  Yoga done properly is supposed to increase the health of your nervous system, increase blood flow, and reduce stress.  Sounds like a great combo for people with Dysautonomia.  Try what you feel you are capable of and don’t over do it.  I have had numerous relapses because I have worked out too hard.  Make sure you ask your doctor before pursuing a new workout.  The whole process is a lot of trial and error and highly depends on the capabilities of the person.  Just remember to try and exercise and you will feel better.

-Tyler

Today I had to take an AP Environmental Science test. I sat down to take my test and a particularly brutish lady immediately questioned why I had my water bottle out.  “No food or drink allowed!” she said with an authoritative tone.  I immediately explained my situation and after pulling out a doctor’s note and using a  little persuasion I was allowed to stash my bottle under the table.  Today I was lucky!

Last year when I took the SAT tests, I did not apply for the disability testing.  I wasn’t disabled in my mind and I still am not!  This chivalrous attitude actually turned out to really hurt me.  I was not allowed to keep my water for that test, and I was forced to battle the SAT with only one break throughout its three hour duration.  Over the course of the test I started off with a steady stream of concentration, but my blood pressure lowered, my concentration dwindled, I couldn’t drink, and I eventually felt exhausted past the point of concentration.  Needless to say my SAT score looked similar to the recent stock market… lots of ups and downs.

Looking back I should have taken the SAT a little more cautiously and signed up for the disability testing.  When I took the SAT II testing, I was allowed to drink so the situation really depends on your testing supervisor.  However on something as important as the SAT, you really can’t afford to take that kind of risk.

It may just be me, but when my Dysautonomia symptoms increase, I feel about half as smart as I normally do.  My brain feels slow and I make numerous typos, can’t remember facts, and can’t formulate my thoughts.  When taking a test like the SAT this is 10 times worse.  The stress of taking the test makes symptoms worse and all the rules really put a cramp on my style of frequent bathroom trips and water consumption.

My first piece of advice on the subject is just don’t take the test if its not required.  Last year I did not take my AP Tests, didn’t deal with the issues, and they did not affect my college admissions.  Next if you must take the test, SAT I for example, sign up for the disability test setting.  Don’t be a hero, I tried it and I don’t really reccommend it.  Other basic tips would be to do the usual routine.  Get eight hours of sleep minimum, eat a lot of salt the morning of, drink Gatorade, drink water, and make sure your hydrated (I recommend Gatorade on test days, the high sodium keeps you from having to go to the bathroom as much).  When taking the test try pumping your legs to keep the blood from pooling in your legs, and try to relax.  Stress mental and physical can be taxing on a Dysautonomia patient.  Remember, the SAT is an important test, but does not define your future.

-Tyler

I’ve done some research about whether bottled water is better than tap water or vice versa and the results are pretty murky.  According to a relatively new MSNBC article there are often more chemicals found in bottled water than tap water and some are probably leeched from the plastic bottle.  An older study by the National Resource Defense Council (NRDC) claims that bottled water has less stringent regulations than tap water despite some FDA regulations.  Frontline’s research tends to support the NRDC findings as well.

Although, I could not find a scientific study backing up the quality of different brands of water, I did find an article done by Women’s Health Magazine with their top choices.  At the end of the day I would probably suggest that you just buy a water bottle and stick with tap water, and if you really want to take an extra precaution, filter it!  It definitely can’t hurt.  Hope you find some of this information interesting and useful!

-Tyler

I was watching a documentary earlier today called Flow about the world’s water crisis and one area the documentary really focused on was bottled water.  There are no regulations on bottled water so pretty much anything is fair game.  This is a big concern for everyone as everyone needs water, but for people with Dysautonomia who drink about five times the amount of an average person to raise their blood pressure, this is a massive concern.  This week I am going to do some research of my own and hopefully find out some solid tips, but first here is my experience with water.

Originally when I first passed out two years ago, I drank bottled water.  Almost exclusively bottled water.  My dad was cleaning out Sam’s Club on a regular basis.  Then I was finally able to get out of the house and work this past summer at Performance Food Group, where my boss Clancy told me that he only drinks from aluminum bottles because of BPA in plastic bottles.  One of his children is autistic and his specialist had advised him against drinking from plastic bottles because of chemicals such as BPA.

I immediately went out and bought my first aluminum water bottle, a Sigg (I’m partial to these guys because they look pretty badass, but a lot of peopl are fans of the Camelbak straws, also BPA free).  Everywhere I went, the Sigg bottle went with me.  I mainly filled it up using the Diamond Springs water jugs at the office but quickly became concerned with the effects of tap water, so I went over to the local Bed Bath and Beyond and bought a Brita filter.

Whenever I was out of the house I made concessions, I would use a water fountain here and there but whenever possible I would use the Brita filter. Then another revelation hit me.  I signed up for an environmental science class and my teacher told me tap water goes through more stringent cleaning processes than bottled water, thus filtering my water was probably necessary.

Ever since then I normally just use tap water.  I don’t go out of my way to filter my water, although our new fridge has a filter in it and I don’t imagine that hurts the situation.  I avoid bottled water just because it doesn’t make sense, and it is much more affordable to drink tap water.  If you can’t give up your bottled water, I am going to investigate and see if there are any reports on what is the best out there.  In the mean time keep on drinkin’.

Cheers,

Tyler