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About spinner

  • Birthday 04/10/1961

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    South Carolina
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    Tennis (before POTS), theology, travel, reading,

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  1. The trigger that precipitated my partial-DA was longterm untreated sleep apnea. I had most all the other symptoms and triggers of POTS, although I rarely passed out. Side effect of all this is that my CNS stopped sweating almost altogether. This was a nightmare known as Anihidrosis. I simply shut down. I did have the sweat study done under the lights at Cleveland CLinic. It took about 40 minutes for my body to basically be "forced" to perspire. Now on BIPAP over 2 years (if you get diagnosed with apnea, just get a bipap which can be used either way). Most apnea is actually upon EXHALE, dont let them give you an inadequate machine. Finally, after 4 years, I sweat Normally---in fact, i sweat about twice as much prior to apnea/POTS. When I finally started sweating right while walking, i was ecstatic to be sweating again! Thank God for bipap, and your bodys ability to heal itself, at least to some degree. My CNS/ ANS is permanently neurologically damaged. But at least I dont feel like im suffocating every day.
  2. Swimming is brilliant. It should snap you out of that gray feeling, especially cold water, and brisk breathing. Klonapin helps a lot of people, because it seems to regulate the autonomic nervous system. Potassium---they make mega K by presciption might help. Ive noticed low sugar gatorade can clear that fog. Cold air ALWAYS helps.
  3. Oximetry does not measure the effort level of breathing. When you talk to a Physician, always say "im struggling to breathe" rather than "i cant breathe" because they will always respond "the numbers are good, you are breathing fine". With DA we are talking about a neurological disorder with wide ranging side effects. One of these is that you struggle to breathe the same way you did before, which is to say, you dont think about it. Your autonomic system uses a system and series of muscles that you are now aware of------- For this reason IMHO you should always use a Neurologist to be treated. Medications can really help. Klonapin saved my life because it took away that "breathing through a straw" feeling. Other things to make sure you do are deep breathing patterns. A lot of people need sleep tests too. Apnea can stifle your daytime breathing effort-----believe me. A lot of people get on cpaps when they need bipaps (because most apnea is actually upon exhale not inhale). You have to cover every base. Food intake, and type is crucial. Digestion can interrupt breathing. Cold air, less humid can also help. Send me an IM if i can help in any other way. Ive been down this road.
  4. Klonopin pills gatorade zero antihistamine plunger effexxor a way to get out of heat fast, anywhere anytime nose drops, sleep apnea bilevel cpap potassium mega pills for periodic paralysis magnesium, folic, vitamin b, testosterone, DHEA
  5. http://www.ndrf.org/NDRF%20Patient%20Handbook/SecA_pp59-134.PDF
  6. Beyond dysautonomia, i'd google other correlated triggers to rule them out. For example, LEAKY GUT (permeable gut syndrome) can coincide with POTS. When i drink decaf, on an empty stomach, i begin to sweato profulsely. This is very similar to an allergic reaction. Check your medical combinations. Many of these meds or anti depressants can certainly cause sweat. Make sure you stay hydrated. Electrolytes. Your diet can contribute. Have you had allergies tested? A sensitivity to hot/cold can trigger things. I tend to run hot, but i do break out in these sweats sometimes. Personally, I have used Klonapin to great advantage over the years without addiction issues, as needed. This can handle a flare. Google "leaky gut" and im sure you'll hit on a correlation.
  7. https://www.youtube.com/watch?v=giGD0xN02rg
  8. I forgot to add that you have to be aware of histamine and excitotoxicity as a trigger. Google these in relation to BP, neurology, circulation, etc. Also, think about your circulation. You get out of a car and suddenly walk into a building. Thats a circulation issue. I wonder if doing a few deep breaths and knee bends etc might help before initiating a brisk walk like that.
  9. Sorry about your problems. Scary but also annoying. Going into a public place is tricky sometimes isnt it? Cant put a finger on it. Could be the ventilation system, the sudden bright lights, or even something like sitting in a car for along time and then suddenly "exerting"--BP spike. Then too, we tend to grab fast food or drink or cofffee when out, and the MSG in everything these days can cause the EXACT type of flare you describe. Hydration is crucial. I like the powerade ZEROS to maintain electrolytes. Are you using magnesium/b12? Supplements? Some may help, experimentation. There are other posts here regarding adrenal issues. THe average doc doesnt do a saliva test, which a holistic doc will. Your cycle could be out of whack. You also could be hyperventilating without knowing it. Illness comes out weird ways. Our bodies react. Breathe deep from your gut, not high in your chest. Finally, not "suggesting" anything but klonopin has stopped these kinds of flares for me. Some say it is habit forming, i have not found that. But then again, i use it as needed, not everyday.
  10. Lots of possibilities, and dont give up that you can get major help with this. I struggle with breathing issues regularly, klonopin, ashthma inhaler, and using BIPAP all help. Allergies can be sudden onset in particular with leaky gut syndrome, google this and also magnesium, iron, b6.12, etc. Alcohol can cause problems. Histamine is another culprit. Google histamine and "excitotoxins" Dr. Cheney did a lot of work in this area. Various forums are your best bet. You will find people with similar issues. Has your neurologist ruled out other problems? Have you been exposed to environmental mold etc? Tick bite? Cover all the bases.
  11. Always thought i was "eating fresh" avoiding mcdonalds and such. Turns out subway food has all manner of junk in it. I have gluten, msg, aspartame, dairy, etc extreme sensitivity and they cause me to flare. http://www.naturalnews.com/039308_subway_deception_food_additives.html
  12. If it becomes a big issue, i'd consider using a chemical such as clonazepam to prevent your symptoms. It can prevent those kind of shaky flares, or bring you back after "exertion" problems. Exertion causes extreme flares for me.
  13. Exactly. The reactions are different. I notice the level of gluten is substantially different. For example, subway 9 grain bread ruins me for about 24 hours. Headache, body melt down, gastro. Other breads are ok for me. I'd love to go gluten free, havnt done it yet.
  14. No problem. The sweat test was worse, but i had built it up in my mind. The key to this is perfect relaxation and knowing that youre in good hands there.
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