Hi-Have lupus diagnosed age 15. I have many many of the symptoms of POTS now but here in this very small town I am having the hardest time getting anyone to do anything for me. Suffering 3 years now. Mine I know started first after I had a C1 neck adjustment by a chiropractor that led me to have what I now call a “spell”. I had them on and off for a year. I was very active and managed one block, one day at a time to get myself back to running 8k, biking swimming…Then I was rear ended and the spells were intensified by 10. I can not exercise now and am having spells nearly every day. And major digestive problems. Constipation to the point of my intestines feel like their on fire now, then relief only by spell causes diarrhea and urination to the point that I get dehydrated which makes my possible pots spells soooo bad. 2 docs think it is a form of dysautonomia but no one is moving on it. The referral for tilt table test had to be done by a specialist. The neuro I seen said I possibly had addisons disease or a pain disorder. Negative on the addisons. Pain disorder is absolutely ridiculous and insulting quite frankly. Internist wants me on florinef but won’t say I have any specific problem. An Emerg doc thinks its POTS and all he did was tell me to salt my food and drink electrolytes and sent me home. Fam doc has sent me for every test known to man but nothing is coming back with results. Suggestion for her? I also don’t see any info here on other causes like mine. Any comments? (AND if you docs out there can help inform my docs I’d be ever so grateful!!)
Hi Melania, Do you know if you have EDS? You can check out my videos on the types and how to run through the Beighton to tell. Have you had an MRI? If so, your doc should be able to tell you if there is any evidence of C2/C1 impingement on your brain stem from the adjustment and the accident. Of course, they’ll want to rule out Chiari, too. If all comes out OK on the MRI (extension, flexion may be especially enlightening), you may have POTS that will respond to therapy as discussed in The Driscoll Theory. I think all of us can remember when our POTS was “triggered” — often by a virus, but trauma and stress are also big triggers. Have you looked into the mast cell meds and possible pressure on your brain? I’ve had all of your symptoms, and actually thought I had an Addison’s crisis a couple of times. It turned out to be SHOCK. Yikes. The SECOND best source of info on POTS (ha) in my opinion is POTSPlace.com . But please keep in mind, with mast cell treatment, treatment of hydrocephalus and CCSVI as needed, we are hitting the CAUSE of the POTS, not just treating the symptoms (as salt, Gatorade, etc will do). We are at the cusp of a new paradigm, and it’s about time!! 🙂 Big hug, Diana