Stitches

Thank you. I will check out the site you posted.

Has any heard of a correlation between having and autonomic disorder and intracranial hypertension?

This forum is so helpful for me. I have been to several physicians and experienced so much of what is being posted. I am still looking for a physician that can help me. Where I live there are no specialist listed and to get a referral to a clinic in another state is difficult. This site has been such a great help for me. With all the doctors I have been to I get a diagnosis of undifferentiated autonomia. They won’t order the tilt table test as I have shown to drop just by the sit to stand BP. Most of what I have learned has been online.

Thanks for sharing this article!

Why would those with dysautonomia accept being told this is not a true disorder and it is all in our heads? With any disorder stress, anxiety can exacerbate the symptoms. I have symptoms that come and go even if I am not stressed or anxious. Maybe I misunderstood your statement but I will not allow any physician to tell me that my symptoms are only in my head.

Thanks for your comments on my post. I too feel I have had some type of symptoms most of my life. I had flares I know in my early 30’s and on and off since then. I can’t find physicians here that really know anything about this. And sometimes I feel my family doesn’t even understand. I really do feel this runs in families and wants to help my family members too.

I was recently diagnosed with dysautonomia. I was also tested for connective tissue disease. I have an elevated ANA and ds DNA but no other significant lab values to determine a specific connective tissue disease. I am not diabetic. I was originally informed that dysautonomia was secondary to another disfunction. I was involved in a trial from Mayo Clinic on hypercholesteremia. In that DNA testing it came back that our family ancestry as 8.6% Ashkenazi Jewish and in reading dysautonomia can be familial, especially in this blood line. When I contacted a National Dysautonomia Association I was told that these symptoms start at birth and progress rather quickly. My question is can Dysautonomia be familial and show up in later life? We feel my father had components of this, I have 1 brother and 1 sister that also show components and now my daughter is experiencing some components. I am 65 years old and female.

It is so good to see that I am not alone with the mood swings. I have never understood them to be maybe a part of dysautonomia. I have recently been diagnosed after 25 plus years of not understanding what is happening with me. So much I need to learn about this disorder and so good to have a forum that I can see what others are experiencing.

After many, many years of trial and error to determine what might be going on with me, I have a neurologist who has put a diagnosis of dysautonomia on my record. I have felt so frustrated for many years for many reasons. Mostly that I have been told all my problems are due to deconditioning and anxiety. Even if I am not deconditioned and not an anxious person. I am feeling a great deal of discouragement with the medical professionals. After I saw the neurologist, I was sent to Rheumatology and I have blood markers that are elevated for a connective tissue disease but again it is reported as undifferentiated and no specific diagnosis but to monitor. They feel this is not connected to any autonomic problems that I experience. The are testing for Lupus or Sjogren's disorder. My symptoms mostly are unstable blood pressure. Usually orthostatic. The cardiologist said I didn't need the tilt table test as my BP drops just from sitting to standing at times. This does not always happen and is unpredictable. These are my symptoms: unstable BP, stomach problems, headaches, sensitivity to light due to Adie's Pupil, brain fog at times, heat intolerance, central sleep apnea. The recommendations are to keep fluids up, maintain adequate salt intake, wear compression stockings and to monitor my BP. I think this is great advice but still feel very misunderstood by my physicians. In South Dakota there are no physicians specializing in this disorder. I would love to connect with others who are maybe experiencing some of the same things I am going through.