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spinner

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Everything posted by spinner

  1. Havnt tried the saline IV, but when i add sea salt to a glass of water its probably half a teaspoon. I probably drink it down too fast instead of sipping, but i have limited time, and its usually when im hydrating before doing my excercise period at late afternoon.
  2. mayo clinic jacksonville neurology or cardiology, or maybe cleveland clinic (orlando?)
  3. When i had wrist surgery back at around age 30 my orthopedist told me thats about the age where the ligaments in your neck start to make that popping noise. Its very unsettling at first, but im 50 now, so im used to all the aches and pains and stiffness of various body systems. Hopefully thats what your situation involves.
  4. Are you on any meds that might smooth out your CNS such as Klonapin? I know that before doing my aerobic excercise (although its much less than before when i could play competitive tennis) I take a pill 40 minutes ahead and usually I feel fine. If I dont and still feel agitated, tachy then I skip that day of excercise. Its just trial and error. I dont know anything about the chemical you mentioned but it sounds worth googling.
  5. They say a glass or red wine or alcohol is good for your cardio system. For POTS people its probably trial and error, but since most of us are on major meds, its probably smart to avoid it seems to me for fear of drug reactions. I think it can also really interfere with sleep, dehydrate you, and for some people with POTS its more or less a poison that sends your CNS into hyperdrive, and you into bed or worse the ER with palpitations.
  6. http://www.prohealth.com/library/showarticle.cfm?libid=8021 Since being diagnosed with OSA (sleep apnea) a couple years back, I was in bad shape--awakening with extreme agitation and shortness of breath (dyspnea). I'd describe the shortness of breath as actually "becoming exhausting by having to breathe" rather than being air-starved. During those awakenings I'd try the ativan or lorazepam scrip and all they ever did was make me even more agitated! Luckily, or maybe I should say providentially, I finally was prescribed klonapin to try, and it worked immediately---which set me off to researching the drug, and why it helps some OSA or POTS patients and not others. During this time I kept having severe POTS symptoms, but I thought it was due to the apnea: dyspnea, cardiac events either at night or day (plunging heartbeat or wildly fluctuating BP). Finally an ENT Surgeon and Sleepdoc told me flat out: "your sleep apnea is under control with cpap---your other symptoms HAVE to be caused by something else, which led me to Dysautonomia. Anyways, there are multiple myths surrounding Clonazepam that MOST doctors have fallen prey to: that its basically just a benzo "anti anxiety" med. Actually, it was originally developed as an antihistamine. The other (controversial) myth is that its HIGHLY addictive and that you cant be on it long. Im definitely not giving medical advice, but only my own experiences, but I have a friend with MS who's been on the drug for 25 years. My original sleepdoc told me the drug in his experience was a miracle drug similar to aspirin for those with heart issues. And I can only relate that I use the drug "as needed" and that I've never felt mentally anxious before using it--- just physically anxious/agitated in the wake of a sudden POTS flare up or an Apneatic event (such as plunging 02 levels (oximetry) which awakens you in the night and presents like the worst panic attack imaginable. This link is to Dr. Cheney who pioneered fibromyalgia research http://www.prohealth.com/library/showarticle.cfm?libid=8021 He maintains that klonapin alongside doxepine (in controlled doses) and with magnesium acts as the ultimate histamine blocker on the planet. Its really worth studying out if you have POTS, partly because there is a reason why it helps some people and not others. And thanks for the site here!!!! Ive been lurking for about four months, but can finally post or respond to posts. I can relate to almost 100 percent of them except the joint pain and extreme fatigue reports. My symptoms never involve pain, but they do involve what I call extreme weakness instead----along with dyspnea, heat intolerance, the shakes, a spinning type of vertigo, and extreme agitation (like I just drank 20 cups of coffee). Before this forum, I never knew how dehydrated I was or how much salt could help. My local docs typically are anxiety prescribers due to complete ignorance of dysautonomia.
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