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firewatcher

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  1. There are several types of auras and subsets within those. I get visual and cutaneous auras: for me it looks like someone has over-saturated everything with colors (super-technicolor!) and then I get cutaneous allodynia. Cutaneous allodynia is where a normally painless stimulus (like wearing a sweatshirt or moving your hair) becomes incredibly painful. I know I've got about 20-30 minutes from the technicolor and pain to get home and take my migraine meds!
  2. http://www.visaliatimesdelta.com/article/20120709/NEWS01/307090003/Childhood-odds-disorder Poor kid, like the bleeding disorder isn't already enough!
  3. "Sometimes if you look hard enough you will find reasons not to try anything." I also agree with this statement, but far too many people don't look hard enough and end up harming themselves saying: "if I had only known!" There is also a HUGE misconception that just because something is NATURAL that it also means that it is SAFE and this is just not the case! This is an ancient and very effective pharmacy! I have had good success with my herbal regimen and have more daily ability now than I have had in ten years, but I would not just try this stuff based on isolated abstracts or chemical studies! I dislike the whole "supplement" concept that CM is given, it oversimplifies a very effective system and creates a cavalier attitude toward substances that need to be respected for their potency.
  4. Issie, Be aware that many of the Chinese herbs you would find are sulfured in the preparation process. I know of two companies that offer quality tested, bulk, unsulfured herbs (Springwind and Mayway) but I believe that you have to be a licensed practitioner to order from them. Individual herbs can also be found as granules and formulas as teapills, and they are easily obtained from Amazon and other places, but they are often not as effective as decocting the bulk herbs together. DuZhong is in roughly 11 formulas: http://www.rootdown.us/Herbs/Du+Zhong?query=duzhong As far as the decoction process, the instructions for cook time/method vary from formula to formula. The instructions are often like "cook in three bowls of water until reduced to one bowl, strain off the liquid and drink in two divided doses during the day." The tangs (that is what CM calls the decoction) that I take are often cooked in a personal Korean herb cooker, which looks a great deal like a coffee maker. The decoction times have varied from 90 minutes to four and a half hours, with the time dependent on the formula and herbs. My son has anaphylactic food allergies and has been on the CM original formula for FAHF-2, which is an herbal formula that has been proven to cure anaphylactic allergies in mice: http://www.ncbi.nlm.nih.gov/pubmed/15637565 This formula is currently being used in phase 2 human trials for peanut allergy. It apparently remodulates the immune system and stops the entire process of anaphylaxis. They are not yet doing a study of his food allergy and I did not want to wait for a drug to be synthesized, so I researched and found a CM medicine practitioner to oversee his care along with his allergist. I did not diagnose him according to CM theory, but the practitioner did, and suggested this formula before I mentioned it. He will go for his second oral challenge in August. BTW- the original FAHF formula is not for many of us here, regardless of mast cell issues. It is very specific and very powerful; it will completely tank your system if it is not appropriate for you!
  5. jpjd59, IF you want to try DuZhong, go see a trained herbalist, it may be entirely appropriate. I am leery of "inappropriate" use of Chinese herbals, the vast majority of these herbs are used in formulas (several of which have helped me.) These herbs are almost never used alone and almost never at the levels you would find in "supplements." Just because a little of something is good, it does not mean that more of it is better!
  6. http://duiyaoonline....rbs/duzhong.htm More info on DuZhong. Be aware, it is a potent anti-hypertensive and can cause hypotension. "The ethanol extract of the herb increases heart rate and contraction amplitude. The herb exhibits a marked cardiotonic action."
  7. Eucommia bark is better known as Du Zhong and can be purchased at just about any Chinese apothecary (look in your local China-town.) It comes raw and salt-fried (it depends on the action you want..don't ask, I don't know!) I DO know that an alcohol tincture is NOT the same as a traditional water decoction and may completely change the chemistry and in vivo action. It would not be used alone in Chinese Medicine, it would be used with other herbs to modify or direct its action. Be very careful, this herbal stuff is not harmless, even if it is natural.
  8. Hot off the presses: Fortschr Neurol Psychiatr. 2012 Jun 12. [Epub ahead of print] [Anxiety in Patients with Postural Tachycardia Syndrome (POTS).] [Article in German] Wagner C, Isenmann S, Ringendahl H, Haensch CA. Source Klinik für Gefäßchirurgie, Helios Klinikum Berlin-Buch. Abstract Background: The postural tachycardia syndrome (POTS) is a condition of the autonomic nervous system with symptoms of orthostatic intolerance. In POTS patients, orthostatic stress leads to an overshoot of heart rate increase without a fall in blood pressure. The purpose of this study is to distinguish between anxiety disorders and anxiety as a concomitant phenomenon of orthostatic stress.Methods: 50 patients fulfilling the diagnostic criteria (orthostatic symptoms, heart rate increase of > 30 bpm or up to > 120 bpm by testing with tilt-table) were included. The study design included a thorough medical history as well as standardised questionnaires about anxiety.Results: The average heart rate increase was 36 bpm after ten minutes of standing and 42 bpm after maximal standing time (max. 45 minutes). POTS patients scored significantly higher than a comparison group in a range of anxiety disorders by using anxiety questionnaires like "Beck Angst-Inventar" (BAI) and trait test of "State-Traits-Angstinventar" which include autonomic items. When questionnaires were used that exclude autonomic items (anxiety sensitivity index: ASI; Interaktions-Angst-Fragebogen: IAF) there was no difference.Conclusion: POTS patients do not exhibit signals of anxiety disorders more often than control groups, provided that questionnaires without autonomic items are used. © Georg Thieme Verlag KG Stuttgart · New York. PMID: 22692879 [PubMed - as supplied by publisher]
  9. My doctor tossed me in this bucket: 2012 ICD-9-CM Diagnosis Code 337.9 Unspecified disorder of autonomic nervous system condition in which there is a deviation from or interruption of the normal structure or function of the parasympathetic or sympathetic divisions of the autonomic nervous system; autonomic dysfunction may be associated with hypothalamic diseases, brain stem disorders, spinal cord diseases, and peripheral nervous system diseases; manifestations include impairments of vegetative functions including the maintenance of blood pressure, heart rate, pupil function, sweating, reproductive and urinary physiology, and digestion. Short description: Autonomic nerve dis NEC. ICD-9-CM 337.9 is a billable medical code that can be used to specify a diagnosis on a reimbursement claim.
  10. Really good movie...for a normal person. I saw it several hours ago and am still shaking! It totally set off my "fight or flight" response, topped off with a headache for a cherry! I should have known better. Good movie though.
  11. Cardiac Mast Cells, Renin and Norepinephrine! Remember, these are mice/rat experiments...I don't know if they translate for people: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1421347/?tool=pubmed
  12. Any article that has appeared on PubMed regarding POTS up until August of 2010 is in the "research" section of POTS Place, on the main page of this website. As for other topics like MCAS or EDS, those are not compiled. Almost all of these articles were compiled by going to http://www.ncbi.nlm.nih.gov/pubmed/ and putting phrases in the search box: dysautonomia, postural tachycardia, orthostatic, etc. They will come up in chronological order, with the newest first. I have not been able to keep up with the articles for the website due to "life" issues, but I try to post any pertinent abstracts that I find as they come out and I find them.
  13. Most definitely! In the US, it is an easy download (copyright.gov I think) and a $30 fee and you have a registered copyright. Under the law, artists have an automatic copyright of original works, but once you put it into public domain (online) it is easily stolen and almost never enforced.
  14. Sue1234- My tremor is orthostatic and a recent thing compared to most of my POTS symptoms. I used to have very steady hands, but now it is only controlled with Inderal (Propranolol.) I totally agree with Dana: dDAVP is NOT a drug to take lightly. If it is appropriate for you, it will make a world of difference. If not, it can kill you! (Just like any other drug.)
  15. I've been on it since January of 2008. It is tricky at first, especially if you are a large volume drinker since you have to ONLY drink when you are thirsty. You need to be monitored closely at first to make sure that you are keeping your electrolytes in balance...if you don't you can end up in the ER in a matter of hours. It totally regulates my HR and BP during orthostasis. It does NOTHING for the tremor or sympathetic overdrive.
  16. I'm sorry about the relapse too! May it be short! Have you tried ginger tea for the nausea? It will cut my nausea for a few hours. You can make it fresh from the root or buy the dried ginger tea from the store. If you add honey it takes some of the heat away.
  17. This might work for the hypotensives: Stroke. 2012 May 24. [Epub ahead of print] Head and Neck Cooling Decreases Tympanic and Skin Temperature, But Significantly Increases Blood Pressure. Koehn J, Kollmar R, Cimpianu CL, Kallmünzer B, Moeller S, Schwab S, Hilz MJ. Source From the Department of Neurology, University of Erlangen-Nuremberg, Erlangen, Germany; Departments of Neurology, Medicine, and Psychiatry, New York University, New York, NY. Abstract BACKGROUND AND PURPOSE: Localized head and neck cooling might be suited to induce therapeutic hypothermia in acute brain injury such as stroke. Safety issues of head and neck cooling are undetermined and may include cardiovascular autonomic side effects that were identified in this study. METHODS: Ten healthy men (age 35±13 years) underwent 120 minutes of combined head and neck cooling (Sovika, HVM Medical). Before and after onset of cooling, after 60 and 120 minutes, we determined rectal, tympanic, and forehead skin temperatures, RR intervals, systolic and diastolic blood pressures (BP), laser-Doppler skin blood flow at the index finger and cheek, and spectral powers of mainly sympathetic low-frequency (0.04-0.15 Hz) and parasympathetic high-frequency (0.15-0.5 Hz) RR interval oscillations and sympathetic low-frequency oscillations of BP. We compared values before and during cooling using analysis of variance with post hoc analysis; (significance, P<0.05). RESULTS: Forehead skin temperature dropped by 5.5±2.2°C with cooling onset and by 12.4±3.2°C after 20 minutes. Tympanic temperature decreased by 4.7±0.7°C within 40 minutes, and rectal temperature by only 0.3±0.3°C after 120 minutes. Systolic and diastolic BP increased immediately on cooling onset and rose by 15.3±20.8 mm Hg and 16.5±13.4 mm Hg (P=0.004) after 120 minutes, whereas skin blood flow fell significantly during cooling. RR intervals and parasympathetic RR interval high-frequency powers increased with cooling onset and were significantly higher after 60 and 120 minutes than they were before cooling. CONCLUSIONS: Head and neck cooling prominently reduced tympanic temperature and thus might also induce intracerebral hypothermia; however, it did not significantly lower body core temperature. Profound skin temperature decrease induced sympathetically mediated peripheral vasoconstriction and prominent BP increases that are not offset by simultaneous parasympathetic heart rate slowing. Prominent peripheral vasoconstriction and BP increase must be considered as possibly harmful during head and neck cooling. PMID: 22627986 [PubMed - as supplied by publisher]
  18. My morning cortisol is high-normal, but will not double at stimulation. Chronic stimulation from stress or illness, causing a prolonged fight or flight response can cause adrenal hypertrophy, explained here: http://ajpendo.physiology.org/content/291/5/E965.full
  19. I was never tested and did not even have a TTT. The doc at Vanderbilt dxed me as having H-POTS based on my BP rise during the "poor-man's tilt" and my other tests and symptoms. I do respond robustly to melatonin: it will drop my average HR by 20 bpm. This data was captured on a 24 hour Holter monitor before I was taking any other meds.
  20. 1. I am more afraid that POTS is simply a "catch all" name for several potentially treatable conditions that are just not know right now. My two biggest POTS fears are uneducated medical professionals, and the possibility that my children might get this. 2. In the rest of life, my fear in life is heights/falling. As for death, well, that is one thing that no one can avoid. I don't fear death at all...I fear living in pain.
  21. I want to see the Avengers with my boys, but I am afraid that the action scenes will really bother me. Rapid sequences act like a strobe light and trigger awful symptoms; were there any scenes that were like that?
  22. Yeah, count me in too. I think it is simply hyper-awareness kicking in. Sympathetic overdrive is a pain!
  23. I have what my neurologist has diagnosed as transformed/chronic migraine. I've had a headache every day for the last 6+ years. Propranolol did very little for the headache, but Klonopin knocked it down to barely a 1 on the pain scale. It was there if I stopped to feel for it, but it was not the nauseous, throbbing, life-stopper that it had been. I have recently attempted to taper off the Klonopin, but the headache is coming back with a vengeance. I may not make it off that med for long. My GP and I have discussed other options that are not "controlled substances," so I will try them, but I know that Klonopin works. I have frequently seen recent articles on dopamine and migraines, and have tried to make sense along with dopamine and POTS. I haven't been able to finish my thoughts connecting the two, but I'm working on it. BTW, Klonopin is a dopamine antagonist, as is melatonin. Here is an article that might help you and your doc make better treatment choices: Cent Nerv Syst Agents Med Chem. 2009 Mar;9(1):63-70. Neuroleptics and migraine. Dusitanond P, Young WB. Source Jefferson Headache Center, Department of Neurology, Thomas Jefferson University, USA. petcharad@yahoo.com Abstract Many dopamine antagonists are proven acute migraine treatments. Genetic studies also imply that polymorphisms in dopamine genes (DRD2 receptors) in persons with migraine may create dopamine hypersensitivity. However, treatment is limited by the adverse event profiles of conventional neuroleptics including extrapyramidal symptoms, anticholinergic and antihistaminergic effects, hyperprolactinemia, and prolonged cardiac QT interval. Atypical neuroleptics cause less extrapyramial symptoms and some atypical neuroleptics, including olanzapine and quetiapine, may be beneficial as both acute and preventive migraine treatment. The combination of prochlorperazine, indomethacin, and caffeine is effective in the treatment of the acute migraine attack. The mechanism of action by which neuroleptics relieve headache is probably related to dopamine D2 receptor antagonist. Other actions via serotonin (5HT) receptor antagonists may also be important, particularly for migraine prevention. Additional studies to clarify the mechanism of action of neuroleptics in migraine could lead to new drugs and better management of migraine. PMID: 20021339 [PubMed - indexed for MEDLINE]
  24. I believe there is simply a stigma/prejudice against women in medicine, both as patients and as doctors. This is a centuries old, perhaps milennia old problem because of the differences in men and women. You can find bias in treatment for everything from migraine to chest pain to mental illness. Good luck with your thesis! J Community Health Nurs. 2006 Fall;23(3):159-67. Ambiguous chronic illness in women: community health nursing concern. Johnson JE, Johnson KE. Source School of Nursing, New Mexico State University, Las Cruces, NM 88033, USA. Abstract The purpose of this study was to explore how women with ambiguous chronic illness, such as celiac disease and interstitial cystitis, cope with the difficulty of being diagnosed and the subsequent realities of daily life. A convenience sample of 15 women with chronic ambiguous illness in 4 geographic areas was interviewed via qualitative methods. Data were analyzed using conceptual coding and constant comparative methods. These categories were identified: persistence in obtaining a correct diagnosis, trivialization and stigmatization, embarrassment, being an inconvenience, and ways of coping. Women were misdiagnosed for years (R = 2 to 11) and felt dismissed as being depressed or hysterical. Yet, they emphasized that persistence in obtaining a correct diagnosis is essential even though it may mean suffering embarrassment and inconvenience. Suggestions for community health nurses to improve the lives of women with ambiguous chronic illness are offered. PMID: 16863401 [PubMed - indexed for MEDLINE] Gend Med. 2011 Dec;8(6):378-87. Women underrepresented on editorial boards of 60 major medical journals. Amrein K, Langmann A, Fahrleitner-Pammer A, Pieber TR, Zollner-Schwetz I. Source Division of Endocrinology and Metabolism, Department of Internal Medicine, Medical University of Graz, Graz, Austria. karin.amrein@medunigraz.at Abstract BACKGROUND: Although there has been a continuous increase in the number of women working in the field of medicine, women rarely reach the highest academic positions as full professors or editorial board members. OBJECTIVE: We aimed to determine the proportion of women on the editorial boards of top-ranked medical journals in different medical specialties. METHODS: We analyzed the gender of editorial board members of 60 top-ranked journals of 12 Thomson Reuters Web of Knowledge Journal Citation Reports categories. A total of 4175 editors were included in our analysis. RESULTS: Only 15.9% (10 of 63) editors-in-chief were female. In the 5 categories, critical care, anesthesiology, orthopedics, ophthalmology and radiology, nuclear medicine and medical imaging, currently not 1 woman holds the position of editor-in-chief. Less than one fifth (17.5%, 719 of 4112) of all editorial board members were women. There were significant differences among the evaluated categories, with the highest percentage of women in the category of medicine, general and internal and the lowest in the category critical care, followed by orthopedics. In every category, the proportion of women as editorial board members was substantially lower than that of men. CONCLUSIONS: Women are underrepresented on the editorial boards of major medical journals, although there is a great variability among the journals and categories analyzed. If more women are nominated to serve on editorial boards, they will be a visible sign of continuing progress and serve as important role models for young women contemplating a career in academic medicine. Copyright © 2011 Elsevier HS Journals, Inc. All rights reserved. PMID: 22153882 [PubMed - indexed for MEDLINE]
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