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Everything posted by spinner

  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.
  15. This article is very helpful in general, but it might be useful to memorize a few phrases for when youre dealing with an MD who has no clue. http://clinicalposters.com/news/2011/0325-dysautonomia-mitochondria-pots.html ""In dysautonomia, the ANS does not respond to stimuli appropriately. ""either the parasympathetic or sympathetic nervous system can be hyporesponsive or hyperresponsive ""Nerve cells in the brain and muscles require significant energy and are depleted with mitochondrial malfunction
  16. The biggest challenge when sudden onset happens is diagnosis. I believe stuff like celiac is a result of dysregulation---spillover into your digestive/cns etc. I had sudden onset allergies after getting sick. One advantage of having a POTS doctor is that they can order antibody and inflammation tests to confirm whats going on. They need a case history and possible cause to make an educated guess.
  17. Speaking of books, there is a book you can google online called "grace grows best in winter". The book by Margaret Clarkson literally saved my sanity the first two years after sudden onset. I read the whole book a few times, but then when times got rough i would read one chapter at a time. Every word in the book goes right to the heart of chronic illness and discovering a way to deal with it second by second.
  18. Impressive list, and thorough explanation of each. Most helpful to newbies but many of the veterans will run across something they hadn't been aware of http://www.dysautonomiainternational.org/page.php?ID=150 ONE example of something I hadnt seen: Sarcoidosis Sarcoidosis is an inflammatory disorder in which the body's immune system causes too much inflammation and then the build up of immune cells in organs such as the lungs, eyes and liver. Sarcoidosis can also impact the nervous system, and in some cases this can result in symptoms of dysautonomia. Approximately 60-70% of sarcoidosis patients go into remission without treatment, but in rare cases, such as that of American comedian Bernie Mac, sarcoidosis can be fatal.
  19. Its an incredible challenge and as they say even more mentally than physically if thats possible. My assurance comes from 1cor 15 and ephesians 2. A couple of books that have helped me are "grace grows best in winter" from amazon and "graduation to glory" by cs lovett. I pray you can keep your heartbeat up and steady because bradycardia can certainly weaken you. Promise us you will stay active and positive and be around loved ones.
  20. Gee, lexapro almost did me in as pre diagnosis my cardiologist put me on it. Had hallucinations, tachachardia, and surprised i made it. At the time i just thought it was my condition worsening. Dark times.
  21. I have bradycardia, or at least unusually slow heart beat. I tried Lexapro once when i first got sick. That stuff practically made my CNS hyperdrive. Started sweating and almost having hallucinations. At the time, i thought it was my disorder getting worse and i thought i'd be dead within days. Lucking into Klonapin was a life saving day for me
  22. http://clinicalposters.com/news/2011/0325-dysautonomia-mitochondria-pots.html *this article discusses every type of pots *it explains why physicians initially type us as anxiety cases *It differentiates the likelihood of getting it by demographics *you can print it and give it to anybody, can be read in 5 minutes, and no more questions asked.
  23. There is a difference between breathing problems (02 deficiency) and STRUGGLING to breathe. MD's dont make that distinction. The muscles that work our autonomic breathing are not meant to be noticed. But when you flare, you get exhausted trying to breathe. We need to be hyper aware of what we eat and what chemicals we ingest. Can inhibit breathing, particularly histamines, gluten, MSG, aspartame, and anything allergic. Also, apnea is a major problem, undiagnosed. Can cause autonomic breathing problems. BIPAP may be needed after sleep test. Sleeping on your back is generally bad. Breathing warm air can make it worse. Breathing too shallow in the diaphragm is bad, as is stress, adrenaline, suppresses the easy feeling of breathing.
  24. For me, not giving advice, but Klonapin solved those episodes. Apparently it binds itself to nerve receptors in your CNS/sympathetic nervous system. People are wary of clonazepam because it is powerful, and it can be habit forming. Ive never experienced that myself and ive been on it 3 years. They also use it for MS patients. The type of adrenaline rush can actually be made worse by what hospitals use for anxiety----Ativan. Ive never yet met a person who used k strategically and carefully that it did not help. Starting at a lower dose is smart, and making sure not to be on it too long unless advised by dr for chronic condition. For me, it was literally a life saver. I got my life back with it, before then i felt like a burned out appliance during a flare and had no way to stop that feeling.
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