Thank you, Recipe, for such a detailed explanation of your symptoms! I apologize for the late reply. Sunday I had to go to the ER due to an AFib attack (I have that as well). So many things you’re describing I can relate to. I’m not sure what you meant when you said you have documented HYCH? If you could tell me what that is.
I have low blood pressure. I have PVC’s, PACs, SupraVentricular Ectopy. I take 50mg Metroprolol only “as needed” as I am just starting out with AFib. However, when I do now, my blood pressure REALLY drops. Why give a blood pressure lowering medication to someone who already has LOW BP for AFib to lower heart rate? I was told by another doctor it’s because that’s the only tool in his box (like there are not a lot of options to slow the HR). So I go into Tachycardia then the AFib. Also happens with nonstop heart pounding, especially when laying down. What is weird and I’m not sure this happens to you, is the vibrating started in my left leg and still does that…but it moved up to my chest. So during the night, when I wake up (which is so frequently, I have these “Chest/Torso Vibrations”. Which is a precursor to the tachycardia, then AFib if it goes that far. Then I took the Metroprolol and I was so light headed I went to ER where my BP was 75/53 or something awful like that. I was started crying while being triaged and that kicked me out of the AFib (not the Metroprolol—that had no effect). So this is my sympathetic/parasympathetic not working well. Very adrenaline sensitive. I am not quite POTS but that may be coming as my HR goes 25+ bpm when standing. At first I thought that was due to deconditioning. I’ve also had night terrors twice which I’ve NEVER had happen before…very very scary. Tonight I am waking up just about every hour…for some reason I can’t stay asleep. My sleep is very broken which can lead to a host of other problems.
I have severe thoracic kyphosis and disc bulging/herniations as well, however, all the Neuro wanted to do was a Brain MRI and Cervical MRI. I really need the Thoracic and Lumbar MRIs but he won’t order them for some reason, even though I have a long history of Sciatica down the left leg (the one that buzzes how) and any slight arch to my back causes pain on the lower right side. The Cervical MRI showed MODERATE FORAMINAL NARROWING C4/C5 Left side…now my left collar bone can barely feel touch. It’s like it’s dead skin. It’s lost sensation. I’ve also lost sensory sensation in certain places around my ankles and lower legs, but I’m wondering if that is from all the edema/blood pooling and now I have super large veins in my lower legs. I wear compression stockings now.
Last summer when I presented to the ER, the attending saw my heart monitor go from 42 bpm (I had bradycardia then), then 178 bpm, back down to 57 bpm all in under one minute! She said she’s never seen that before. So my Neuro suspects Cardiac Autonomic Neuroopathy and referred me to Vanderbilt or told me to go to Mayo. I don’t have money or good insurance so that’s out of the question. Neuro wants me to do that painful Electromyography and Nerve Conduction Velocity tests which he believes will be Negative and also believes what I have may be idiopathic. So I keep canceling that that painful test. Why bother?
One of my initial symptoms was very dry mouth. I have it constantly. I had a lip biopsy that was negative for Sjorgren’s.
I also had as an initial symptom (which still happens) is difficulty swallowing. And when I ate some old bad food, I tried to make myself throw up and it worked the first couple times, but them my vagal nerve failed and I could not make myself throw up. (Sorry for any detail too graphic). I’ve been tested Negative for Lyme, Paraneoplastic Syndrome, antibodies for all the major autoimmune diseases (Scleroderma, Lupus, Erler’s, Rheumatoid Arthritis, etc.). The only one that came back high was my Kappa Light Chain (which could signify Multiple Myeloma), so I’m waiting to hear back from Hemotology/Oncology as it came down slightly but still elevated.
Also have had 2 instances since last summer of slurring words and just above my upper lip fasciculations. I’m so sorry to hear you have Trigeminal Neuralgia! Do you get it often? Does the pain meds work? There are doctors that do surgery to cut that nerve if it gets bad.
i get severe cramps at night in my calves with stiffness upon waking. I’ve been taking Magtein (Magnesium Threonate) which helps a bit but my lower calf muscles get really stiff and can cramp, even at the ankle.
I was exposed from a crazy neighbor that lived above me to a lot of poisons. Pesticides, Herbicides, mustard gas (long story) from 2014/2015. Now my nervous system is going. I worry about Multiple System Atrophy, tbh, which is eventually fatal.
