My symptoms seem unusual and I’m looking for advice. I’ve just read Dr. Diana’s book but I’m not sure if I’m a fit or not. Anybody who can help me piece this together is much appreciated.. I’m at the end of my rope.
38 y/o male.
EDS Hypermobility, pain, subluxations, tendinitis since birth
Obstructive Sleep Apnea just treated last year
Rem Behavioral Disorder (sleep walking) treated for about 10 years now
GI issues, gluten intolerance (for a few years) and now sensitive to all kinds of things. Eating an AIP (Auto-Immune Protocol) diet (meat and veggies basically). 7 years of chronic IBS first
Chronic Fatigue (since childhood)
Chronic low testosterone including sexual dysfunction. Diagnosed in my early 30’s with secondary hypogonadism (where the brain isn’t sending enough FSH or LH to the testicles) I’ve been treated for about 7 years now on Clomid, Testosterone is normal now.
And now for the POTS….
I’ve always had normal or slightly low BP, light headedness and a ton of fatigue but last year I started to notice when I turned my head (mostly to the right) I was getting strange feelings (now I know that it is pre-syncope). I went to a new endocrinologist and she ran test panels that showed extremely high Creatinine, low potassium (hypokalemia) sodium wasting, polyuria, low (almost non-existent) vitamin D, elevated morning cortisol. She suspected DI (Diabetes Insipidus) but was most concerned about my kidneys.
She referred me to a nephrologist who ran her own tests and concluded that because of my extremely muscular build my creatinine can be this high and it is not abnormal. I don’t fully understand all of her logic but she insisted that I wasn’t in chronic renal insufficiency.
Endo ordered tilt table test at my request, I passed (or failed) I passed out… BP went so low they couldn’t even read it.. I wasn’t completely out but I can’t remember everything so I was pretty gone.
She is treating my POTS with Midodrine, Salt, Fludrocortazone, Potassium tabs (because I’m still low). I’ve experimented with water ranging from 1 liter to 3 liters and salt ranging from 2 grams to 8. At one point my BP rose (from the salt) all the way to 170/110 and I was still dizzy anyway.
Accidentally, I had a day where I drank a lot of coffee and not a lot of water and surprisingly felt better. Since then I’ve been drinking one liter of water with 2 grams of salt every morning and only a few cups of coffee for the rest of the day. I still have dizziness and fatigue but somehow less water is better for me. My only theory is that the more water I drink the more the polyuria kicks in and I’m losing too many electrolytes in my urine.
I’m fatigued, dizzy and lost.. I’m not even sure how I make it through the days. I’m working 14 hours / day and supporting my small family (wife, child, cat) but I’m afraid I’m going to collapse soon. I cannot stop working I have people counting on me. I’ve tried all kinds of different salt, water, midodrine, caffeine, fludrocortisone combinations at different intervals but I never seem to find any particular combination that works well. Staying on the verge of dehydration seems to be the best option so far and is completely backwards from the advice most POTS patients receive. I have all my POTS symptoms in the evening (don’t most people have morning issues?) and putting my legs up does nothing for me.
I’m about to ask my endo to give Dr. Driscoll a try. Any thoughts? I know it’s a lot but I just don’t know what to do..