Do I have dysautonomia

[bigt72]

I had a baby last February and about 2 months later started to experience what I call lightheadedness that never went away.  I didn't have it while lying down but once I got up it lasted pretty much all day like I was in a fog.  By afternoon I was totally wiped out.  I saw a doctor about 3 weeks later who said I had vertigo though it did not feel like the room was spinning.  Another doctor said the same thing so I waited a while longer and the original doctor then sent me to a cardiologist who did an echo and ekg and said everything was fine.  He then did a title table test the results of which were 71/52 mmHG and heart rate of  93 bpm and diagnosed nuerocardiogenic syncope though I never fainted.  He told me to drink lots of fluids and increase my salt and let him know.  This did not help and so he prescribed Florinef which I have not taken because I am afraid of side effects and am not sure this is the problem after all.  In the meantime, I am becoming more worried as I now have tingling and slight numbness in my toes.  I went to see a physiatrist who did a brain MRI which was normal.  She seems to think I could have dysautonomia.   Please give me any thought/suggestions anyone might have?  I am really becoming very worried and as there are no specialists in this field in the country where I live I would have to look into whether my insurance would cover me trying to get this diagnosed.   Can a neurologist diagnose this?  Or any other suggestions on what this could be?  Thanks.

[LindaTX]

Thank you, sorry, and yes, I will.

[halbashes]

The time stamp is updated automatically, and not editable by Community Leaders.  If you are noticing some type of technical error, I would recommend alerting MedHelp through the "Contact Us" link at the bottom of the page.

[halbashes]

Dysautonomia can be diagnosed by either a Cardiologist, or a Neurologist.  Diagnosis is often elusive; requiring a visit to either an academic teaching hospital, or a Dysautonomia Specialist.

Neurocardiogenic Syncope is one form of Dysautonomia.  Florinef is one of the more common treatments.  If your doctor has already prescribed Florinef, it may well be in your best interest to give it a try.  Though if you are nervous about the prospect of taking medication, you should let your doctor know about that as well.  S/he may prescribe smaller doses, or have other recommendations for you.  If you do end up taking Florinef, one of the side effects to be aware of is lowered potassium levels.  I would recommend asking for an electrolyte level about a week or two into treatment.  Some patients find that they require a prescription potassium supplement as well.

Increasing fluids, and sodium intake is one non-medicinal treatment.  Gatorade G2, or Powerade Zero if you are watching sugar intake, are good options.  There are many other options available for keeping hydrated, which I'm certain our community members can help with any recommendations.  There are also salt tablets, which you can ask your doctor about.  I haven't had much luck with them personally, but I know there are patients who have found them somewhat helpful.

Another non-medicinal treatment commonly used in our community is compression stockings.  These garments, though often uncomfortable, increase blood pressure by constricting blood vessels in the legs.  I think most of us have found prescription thigh-high compression to be the most helpful.  It's usually recommended to start at a 30-40 compression, but some of our community members use higher compressions.

Florinef:
http://www.medhelp.org/drugs/Florinef-Acetate/show/5390

Autonomic Dysfunction & Dysautonomia Index:
http://www.medhelp.org/health_pages/Neurological-Disorders/Autonomic-Dysfunction--Dysautonomia-Index-Page/show/857?cid=196

Diagnosing Dysautonomia:
http://www.medhelp.org/health_pages/Neurological-Disorders/Diagnosing-Dysautonomia/show/827?cid=196

Dysautonomia Specialists:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

Dysautonomia Treatments:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Treatments/show/171?cid=196

[LindaTX]

I was just curious why the time on this post has been changed?  Is it because there isn't much activity on this forum, except by the "leaders?"

[bigt72]

I forgot to mention that I also had blood work done which ruled out anemia, any other deficiencies or thyroid problems.