February 17, 2016 at 6:30 pm #968sharlablueParticipant
I can’t thank you enough for your informational videos. I have a question for you, if you don’t mind, at the end.
I’ve been down a long road and I’m hoping that I’m going to find some answers soon, thanks to you. I have symptoms of hyper-pots, but haven’t seen a cardiologist before to have a diagnosis. For example, if I’m lying down my pulse is steady anywhere from 68-78 bpm and my blood pressure is nice and easy with a bottom number around 70-75, but as soon as I stand up everything shoots way up and my pulse will hit 115 and my BP bottom number will be 100. I watched your video about Hyper pots and yes, I do act like a crazy person sometimes even though I swear I’m not crazy (and YES I have even thrown things before). It’s beyond my control at times, which stinks because I am a loving mother of three…I promise! I also have to PEE all the dang time and always feel like I’m on the verge of a UTI. I have chronic, severe head pain, of course. And to top it off I have symptoms of Rheumatoid Arthritis and Ankylosing Spondylitis, but no “slam dunk” diagnosis from the Rheumatologist since none of the markers show up in the blood work. I have chronic uveitis now days, abdominal pain, geographic tongue, stiffness up the wazoo, and an ultrasound of my hands confirmed the inflammation just like RA. Also, I do happen to have a Chiari Malformation (confirmed diagnosis by a Neurosurgeon, not Dr. Google), but have not had decompression surgery. I don’t think I have EDS, but you never know. I don’t have all the tell-tale signs that you describe.
My neurologist suspected high intracranial pressure and I did take Diamox, which did help. Honestly, I think my POTS-like symptoms WERE better (shocker!) (Oh, and side note, my pee was SUPER DUPER cloudy and I barely have moons on my fingernails.) He took me off Diamox because the eye doctor said I didn’t have Papilledema when I saw him for the uveitis. The neurologist said that I didn’t need it anymore and I should use Topamax given that I also have significant scalp pain. I, personally, think I have migraines AND high ICP.
Bless you for reading this far… Finally, my question. Is it possible for MCAS to present itself much like RA and AS? You said that it causes inflammation…just wondering if THAT might be what’s going on. I DO get itchy when I sweat and sunlight does make me get a rash. I’m allergic to penicillin, Sulfa and seem to always react to any medication I take. I, for a reason that cannot be explained, also started menopause at age 31 and whenever I was PMSing there at the end I would have rashes all over my chest.
The Rheumy wants me to start plaqunil and I worry if this is the right course of action if this isn’t an autoimmune issue and is a POTS issue instead. Any advice?February 20, 2016 at 12:00 pm #5877Dr. DianaKeymaster
I would be tempted to have a tilt table test next because it IS possible that POTS (and maybe EDS) is an undiagnosed aspect of your condition. A relatively easy test, with objective results. Keep us posted? 🙂April 26, 2016 at 3:19 pm #5940sharlablueParticipant
Wowee! So much has changed since I posted that! You may find this interesting, Doctor! As you suspected, yes, I was just diagnosed with EDS-HM by a doctor who is familiar with it. I am going to see a clinical geneticist next month for further investigation. But get this…this is his theory. He thinks that with my last delivery of my 10.5lb son who came out in 4 pushes I managed to damage my pituitary in the process. With being stretchier than normal I pushed him out fast and add my Chiari malformation plugging things up on top of that and you have the recipe for intense pressure increase and decrease. My recent hormone test came back showing low cortisol as well and he suspects that may be the big reason im experiencing dizziness and intolerance to standing. Here is the weird part and where he didn’t really listen–my blood pressure goes UP when I stand. That doesn’t fit with low cortisol.
How’s that for unusual?! 🙂
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