POTS Dysautonomia - Hope for patients

[kkrylee]

My daughter is in college at Centenary in Shreveport, LA studying Neuroscience with the hope of becoming a Pediatric Neurologist specializing in Autonomic Disorders.  She has POTS, Autonomic Neuropathy, Mitro Valve Prolapse, and a mild form of Ehlers Danlos.  She suffers daily but fights to continue in her education.  We don't know if she will make it through medical school, as you all know, her symptoms may not allow such a rigorous schedule but she won't give up easily.

The good news is that she is studying with a lot of future neurologists and they will all be very familiar with Dysautonomia as her teachers allow her to speak to the class on her disorders.  She is also a strong advocate for "Invisible Illness Awareness".  This is her platform as a contestant in the Miss America pageant system.  She will compete for the title of Miss Louisiana in June 2011.  We have no autonomic doctors or clinics in Louisiana either.  We had to go to Dallas for the testing and diagnosis.  

[Myrla50]

I am 50 years old and I have dysautonomia. I have not been diagnosed  as such but the MVPS (Mitral Valve Prolapse Syndrome) could also mean dysautonomia. I have the symptoms and as I go thru the list, I have experienced few of them when I was lillte, like fainting spells and dizziness. I knew all along I have been suffering but just trying to ignore since I can manage to carry it around but sometimes limited. lately, I had sever palpitation, my bp went up, had numbness on left arms and legs and the worst is fatigue followed by panic attack. A freind of mine suggested a webpage that discusses the problem, so I logged in there and also found two books that I jsut read now and they are very helpful.

[nantali]

Hi,I have Autonomic  Disorder since I am 12 years old now I am 66. My life has been  very diffcult. Since most of the doctors, just donot understand what a sensible person one is. I have studied alternative medicine and  I am a Flower Essence therapist. I just do not take any medicine anymore,  I have all the sideffects and things do not get better. I have had a bloodtest taken by a German Lab, and they found that I  have many allergies to certain foodgroups. The Allergies afect the IgG the Inmunsystem. So I try not to eat them so I am very limited what I eat and special qhen I eat out and they put things in I cannot see.I get heartarritmies within seconds when I eat somthing with Gluten and it is even in some icecreams.
I have to  have a very regular life without to much stress. But  severe diets are the trigger Nr one. Yesterday I had only cotagge cheese and a slice of pinapple 3 times a day. And today when I got up I was so dizzy I had had brakfast fast, But then I had a treatment called Rolfing and just lying down my head  was spinning, And it still lasts even I had normal meals again.So one has to watch out for the personal trigger.I need to eat a surtain amount of protein a day if I eat less the same happens. So just write down what you do what you eat, and the symptoms.I take flower essences for the emotional health, otherwise I would be depressed and with a lot of fears.I took also Frequensea this helped me a lot and sometimes I take for 3 month the transfer factor.I do everything for the Inmunsystem. But I was diagnosted with 12 years of age. And it is a rollercoaster ride, sometimes good sometimes better and than worse.But is does not go away.

[kkrylee]

Being the mom of a child so ill is really difficult especially since she has been in college 5 hours away from home.  The last 3 weeks have been the absolute worst for her.  Vomiting, diarrhea, weakness of muscles, fatigue, BP drops to 80/40, and HR up to 220 with activity.  She has made 3 trips to the ER in the last month for IV Saline.  It is the only thing that we have found that really helps her to feel better but she would need at least 2 bags of saline per week to function without major issues.

She is trying to complete 2nd yr of college this week and we are going to Dallas on Thursday to see her Autonomic Specialist in the hope of getting some help.  So far, no meds have worked well for her.  She is a fighter and determined to try to live a normal life, but the last month has shown her that she can't.

She is competing in the Miss Louisiana pageant in June and is very concerned that the week which will involve constant activity is going to take a toll on her body before she actually competes.  She desparately wants to be able to do well in this pageant.  She wants to ask her doctor to let her have a pic line for the week to get saline.  She has been conversing with someone who also has POTS that has a port and actually gets saline every night when she sleeps.  The woman states that it has been the best thing for her.

We will see what the doctor in Dallas says in a few days.  Thank you for your concern.  Wishing you and all others with Autonomic disorders the best.

[Heiferly]

Glad to see you're still on MedHelp!  Haven't talked to you in a while!!  That's awesome that she's so ambitious and I wish her the best of health and success in all that she aims to achieve.  Please do continue to keep us updated.  Send her our best!  Are you holding up okay these days?  I know being the dysautonomia support person can be a lot of work too!

Heiferly.

[LivingInHope]

I found your post interesting and hope your daughter isn't overdoing with all her activities!  I'm glad she is sharing about her disorders with future neurologists.  I hope scientists will be able to make great strides in figuring out how doctors can better treat those of us suffering with dysautonomia.  I'm also glad you were able to travel to somewhere that could diagnose your daughter!