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I just wanted to post an introduction...

(Please forgive me if this is the wrong place to do so - I may have missed something in the guidelines, etc.)

After chasing symptoms, seeing doctor after doctor, test after test, being diagnosed with (and treated for) everything from ADHD - Inattentive Type to "Stress Reaction" to Chronic Fatigue Syndrome to Fibromyalgia to Obsessive Compulsive Disorder (because I must be obsessed to think about my symptoms so much and to spend so much time looking for an answer) to Anxiety Disorder with Panic Attacks...and then just refusing to see doctors entirely (except for meds (for ADHD and allergies) unless I had an acute illness or injury which needed treatment) for well more than two decades...I was finally diagnosed with Hypermobile Ehlers-Danlos Syndrome by a geneticist in February of this year and told to see a cardiologist for POTS symptoms.

The two conditions essentially explain my entire life. I've had symptoms from both for as far back as I can remember, with the Dysautonomia waxing and waning, though getting a bit worse each time it cascaded. Then the POTS took a huge nosedive in 2008. No one had any idea what was wrong with me and I was treated for possible "silent migraines". (I was having occasional migraines with aura, but I now recognize all of the other issues were consistent with the POTS.) The treatment from the neurologist to some extent made things worse as it lowered my (already low supine) blood pressure. I only started to improve when I weaned myself off the medications, started exercising fiendishly (after working up to it), and started taking the Adderall again (which I stopped in 2008 thinking it was hurting and not helping the "migraines"). In December/January of this year, my symptoms started to nose dive again with some major stressors in our lives.

I started seeing Dr. Abdallah in Reston earlier this month, and after completing all of my various tests, just started my first medication for the POTS yesterday (Midodrine) and will continue to take the Adderall (though at a lower dose) for now.

My daughters (10 & 12) have both had symptoms of both the EDS and Dysautonomia nearly all their lives. In fact, it was my youngest's chronic neck pain and daily headaches that took us to the pediatrician in February which is how I ended up at the geneticist. My daughters' doctor suspected it in both of them, but as my history is longer and my symptoms much more apparent/obvious at this age, she told me to go first - making their diagnoses (if I had EDS, which I do) much more clear cut with a 1st degree relative's diagnosis. My youngest has seen Dr. Abdallah once already. All in all, she's steadily improving week by week without medication...but we're heading into summer which is always the worst for all of us, of course.

The oldest's symptoms have been less dramatic - yet more daily for a longer period of time. Dr. Abdallah suggested we get my symptoms stabilized with medication and then bring her in. He has seen where families often have similar responses to medications, and is hopeful we'll know exactly what direction to take once he has my symptoms stabilized. So for now, we're using all the non-pharmacological means we can to help them feel better.

So thankful for DINET (which is how I learned about Dr. Abdallah in the first place) and for the many resources here!

~Kari

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Hi! :) Welcome to the forum. I just started seeing Dr. Abdullah in Reston too. He's a great doctor. Hope this forum is a lot of help to you!!!!

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Welcome Kari...I have a sister in Reston, Virginia!! Wish you the best. This is a great site for dysautonomia information...one could spend hours researching!!

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