Neurological treatment for Dysautonomia

[Stewartmac]

Hello to all

I am new to this forum, and reaonably new to the term 'Dysautonomia', so please forgive the absence of clinical terminology in my explanataions.  I have been seeking answers to my problem for 10 + years from various doctors...to no avail.  I had the good fortune in recent months to be watching a program on the Discovery Channel that focused on Dysautonomia.  As a result of my Internet research, I have made the following progress.

Through my Cardiologist, I have had a Tilt Table test that indicate my symptoms of Dysautonomia are not cardiogentic.
I am presently in the process of trying to locate a Neorologist in Southeastern Pennsylvania (Delware County) to proceed with a Neorological Tilt Table test.  At the time of this writing, I have not been successful in locating a Neurologist specializing in Dysautonomia.

My symptoms listed below have been progressive over the past 10 + years.

Symptoms: begin with feeling of pressure left side of head (over left ear) accompanied by discomfort/tingling same area (pain level 1-2), increasing to pain level 8-9 after a period of 5 + hours. Lightheadedness, fatigue/weakness also increase in upright position over 5 + hours.  The symptoms are gradually alleviated upon lying down. After a period of resting (lying down) the symptoms diminish.

Awakening AM, no sign of symptoms while lying in bed or upon rising. Symptoms begin within an hour after rising. Pressure and discomfort increases with time standing or sitting.  Symptoms increase  noticeably upon climbing stairs.

Two Tylenol relieve the discomfort level to perhaps a 6-7, however the fatigue/weakness can only be alleviated by lying down  for a resting period.  Upon rising, the cycle begins all over again.

Perhaps coincidental, I have observed that the intake of sodium, (salted pretzels and the like) seem to somewhat alleviate the discomfort.

I would greatly appreciate opinions and recommendations of forum members.

Thank you

Stewartmac

[halbashes]

I'm sorry to hear about your troubling symptoms.  Did you have any symptoms during the Tilt Table Test?  Also, how is your blood pressure?  Individuals with Dysautonomia normally have blood pressure abnormalities.

Have you had an EEG (test for brain waves), or EKG (test for heart rhythm)?  Any fainting, or seizure-like episodes?

I wish for you much luck in finding an appropriate doctor, and treatment for your symptoms.  Sorry I can't be of more help.

[sue3708]

I just found a doctor at Greenwich hospital in CT.  I found him by accident.  I am seeing him in 2 weeks.  My primary care physician faxed all my abnormalities, Gastric emptying studies (x2), urinary retention ptoblems and abnormal tilt table test.  hopefully he will be able to help this has been 6 years of this!

[chris57]

Hi I have had dysautonomia for 14 years with different sympotology than yours.
I have a wonderful neurologist in Baltimore maryland, His name is Ramesh Khurana; he is best in treating dysautonomia.  He is so knowledagble and so caring. He is head of Neurology at Union memorial hospital; you could also call his office and see if he would know someone in your area.
I think it is so important to have a physician who has expertise in the field of dysautonomia.

[rhonda1017]

Hi,

     I don't know of a neurologist in the Pennsylvania area, but I am going to the MAYO CLINIC in Rochestor, MN on October 6th.  There is a neurologist there and they have a Dysautonomia Lab and Research Facility.  I will be seeing several doctors and at least two of them are neurololgists that deal with dysautonomia.  I have heard they are really good, but I won't know until I get out there.  There is supposed to be a doctor in Ohio, Dr. Grubb, but you can't get in to see him for about a year.  I have an appointment with him but not until March.  I can't wait that long.  My tremors have gotten so bad, that I can hardly stand up.  I know that I have a positive tilt test and have HyperAdrenergic POTS, but the doctors at the Cleveland Clinic believe that the POTS is a secondary disease to a primary one.  I have only been sick since Feb. 26th, but my symptoms have gotten much worse and many new symptoms keep cropping up.  So, I am going to the first place I can get in to.  I wish you luck and hope you find someone close to you.

Rhonda