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NaomiSpellman

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About NaomiSpellman

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    Advanced Member

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  • Website URL
    http://dysautonomy.blogspot.com/

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  • Gender
    Female
  • Location
    San Diego
  • Interests
    Geography, Space travel, News Stories, Neurology, Mental Health, Medical Ethics
  1. I have terrible sensitivity to any pressure, metal, or textiles on my skin. I get diarrhea just from wearing loose shorts around my waist. I get a migraine if I put on a bra within minutes (sinus tachycardia?). I am naked at home, unless I have to cover up.
  2. You can get some pine 2x4's cut to match the length of your bed (or slightly shorter). I had about 8 of these for my old twin bed. Then you also want a 2x4 cut to match the width of your bed (or less). Place the single short piece across the top of your bed frame or platform (along the top where you will lay your head). This short piece will raise one end by 2 inches. Then lay the long pieces on top of that, spaced out as needed. Then your mattress can rest on top of the long pieces. The spaces in between will also help your mattress breath better.
  3. Thanks Blue. I appreciate it. It seems like migraines respond to meds in strange ways, and it also seems like migraines respond to themselves in strange cycles. I am scared b/c I am getting manic from being up night after night. I can sleep for a couple hours, then wake up with migraine. I am afraid to go to sleep, and it is making me manic. Headaches are coming when laying down mostly. But I am afraid to try opiates b/c they are addictive, and because as you and others point out, they have a limited usefulness. Were you every prescribed Ketamine? Based on the research I did it seems promisin
  4. I don't have insurance for pills, but Coffee seems to be consistently helpful, though in controlled quantities.
  5. Those who've been on Amitriptyline: has it negatively influenced your heart rate, arrhythmia, or vascular symptoms (for example sinus tachycardia irregularities)? I was under the impression it might be unsafe for POTSIES. Looking for clues. Thank you!
  6. Do you have urinary symptoms (pain, burning, difficulty urinating)?
  7. "We don't see anything wrong with you. But if you experience any changes, let us know." said to me by my then-GP, who pulled in several staff members to stand around me in a threatening manner, while I sat in the middle. They never ran a single test though I came in 4x that year to try to get them to help me. And *** does mean "changes" to a POTSIE anyway?! There are nothing but changes. No day is the same. Every day is full of surprises. "May you live in interesting times", indeed! May you live in an interesting body.
  8. Both my Mom and I are the largest among our siblings. Neither are first born (we are the youngest). Both of us have: bradytachycardia, exercise intolerance, heat intolerance, orthostatic intolerance, and syncope when young. Her symptoms stop there. Mine go on and on... Neither of us had a single trigger; both had lifelong symptoms. I was physically very strong when young; never stopped moving.
  9. I have had symptoms my entire life, though always shifting. More and more co-occurring symptoms. One of my parents has similar diagnoses but not as pervasive/disabling. And this same parent;s siblings: many autoimmune diagnosis (Edamatosis, FM, connective tissue disorder).
  10. So wierd my headaches/migraines are kicking in while laying down, the opposite of what the above experience! I have been afraid to lay down completely horizontal since Monday as I have recurring headaches (with other symptoms kicking in at same time) I assumed that these headaches that occur with changes in position are related to Sinus Tachycardia? That is, when our heart rate is out of sync with the rate of blood flow through our body, strange sensations/pressure occurs at different points. I often "feel" this pressure acutely in particular points, almost like I am having a migraine in my: t
  11. Need help with advice from those who know. Daily recurring migraines since Monday. Sinus tachycardia-related; can't lay down at night for fear of instant migraine. What to do? No insurance card (yet, waiting for response after applying last year); no $. Can't tolerate prescription migraine pills due to arrhythmia, vascular problems, and seratonin issues ( Bipolar). I am surprised others on this forum are taking amitriptyline as it is not reccomended with vascular and arrhythmia problems. Has anyone had Ketamine (IV or nasal spray) administered for migraines? Opiates? Am thinking of going to ER
  12. DBP4620, Sufilizard, and others: Did your ear itching start deep inside the ear? I have had lifelong ear problems (pressure, vertigo when traveling, pain when diving, tinnitus) but the itchy stuff started after irritating my ears in the winter when I was in the cold ocean. After getting buried by waves a couple times one day, my rotational vertigo problem started. Then I got terrible itching inside both ears, leaking brown fluid, tinnitus, sounds like being underwater (strange sound effects). I was so dizzy I had to hold on to the walls at work, and got really distressed and confused when s
  13. I had to get off beta-blocker Verapamil due to lowering BP, worsened OI and Bipolar symptoms. I became suicidal and had to get off it cold turkey one day. Too bad because it did help with migraines and upper body achiness from Sinus Tachycardia. I am afraid to go on pills again. Are you feeling fear, impending doom sensation (like something terrible is about to happen)? Or do you mean fear of med side effects?
  14. Racer and k&ajsmom: Thanks for your observations. I will discuss these with my Cardio and I hope to start seeing a real psych soon ( in addition to my current CBT student counselor who is great) and I want to discuss medication options and non-chemical treatments. I am hoping to get in with a Psych doctor who is accustomed to dual diagnosis/comorbity issues, because I have run up against complications before and it is scarey! I appreciate your thoughts.
  15. I would recommend eating slowly and carefully. Don't take big bites. Don't gulp food. Don't drink until food is all cleared. Avoid cold drinks. For pain in feet/legs: try compression hose (put them on before you get out of bed in the a.m. and leave them on as long as you can stand them). Put feet up intermittently whenever you're out and about. SHOES are important! I only wear Keen's because I get blisters/pain from other shoes. They make shoes for nurses and such, but all their shoes have good support and don't bind the feet when swollen. Maybe ice baths would help feet? Massage helps.
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