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  • Knowledge Base
    on the Internet is included as well To read more about neurocardiogenic syncope click on the links under the NCS category in the Information Resources section of the navigation bar Reference Robertson D 2002 July Drug therapy National Dysautonomia Research Foundation Patient Conference Washington D C In The News Be brave Give yourself or someone you love a gift to support and inspire Gorgeous bracelets necklaces earrings even scarves all engraved with the words be brave So many products to choose from in so many colors and styles These beautiful accessories are a reminder to be brave something we all need from time to time Best of all 10 from the sale of every bravelet goes directly to DINET to help us continue our mission to support and educate Find your special style and support DINET Buy one or two today Visit DINET s online kiosk on the Bravelets page at www bravelets com bravepage dysautonomia information network dinet Volunteer Opportunities at DINET We re looking for readers on our forum DINET is looking for volunteers to help us keep the forum a positive experience for its 4 500 members and growing Readers are responsible for viewing posts and material If you are interested in becoming a Forum Reader please contact us to complete a volunteer application We look forward to hearing from you Contact dinetandforuminfo dinet org Do you have a passion for the written word DINET s quarterly newsletter has room for a few new writers Applicants do not need to have professional writing experience but do need solid language and grammar skills This is a wonderful opportunity to flex your creative muscles and provide information and support to the dysautonomia community If you are interested in joining our team please contact webmaster dinet org An application and at least 2 writing samples will be required Studies Brain fog inflammation and obesity key aspects of neuropsychiatric disorder improved by luteolin From Frontiers in Science Brain fog is a constellation of symptoms that include reduced cognition inability to concentrate and multitask as well as loss of short and long term memory Brain fog characterizes patients with autism spectrum disorders ASDs celiac disease chronic fatigue syndrome fibromyalgia mastocytosis and postural tachycardia syndrome POTS as well as minimal cognitive impairment an early clinical presentation of Alzheimer s disease AD and other neuropsychiatric disorders Brain fog may be due to inflammatory molecules including adipocytokines and histamine released from mast cells MCs further stimulating microglia activation and causing focal brain inflammation Recent reviews have described the potential use of natural flavonoids for the treatment of neuropsychiatric and neurodegenerative diseases The flavone luteolin has numerous useful actions that include anti oxidant anti inflammatory microglia inhibition neuroprotection and memory increase A liposomal luteolin formulation in olive fruit extract improved attention in children with ASDs and brain fog in mastocytosis patients Methylated luteolin analogs with increased activity and better bioavailability could be developed into effective treatments for neuropsychiatric disorders and brain fog To read the full

    Original URL path: http://www.dinet.org/index.php/information-resources/knowledge-base/25-ncs (2016-04-26)
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  • Knowledge Base
    Our web site provides a page full of links to pure autonomic failure resources on the Internet References Mathias C J Mallipeddi R and Bleasdale Barr K 1999 Symptoms associated with orthostatic hypotension in pure autonomic failure and multiple system atrophy Journal of Neurology 246 10 893 898 In The News Be brave Give yourself or someone you love a gift to support and inspire Gorgeous bracelets necklaces earrings even scarves all engraved with the words be brave So many products to choose from in so many colors and styles These beautiful accessories are a reminder to be brave something we all need from time to time Best of all 10 from the sale of every bravelet goes directly to DINET to help us continue our mission to support and educate Find your special style and support DINET Buy one or two today Visit DINET s online kiosk on the Bravelets page at www bravelets com bravepage dysautonomia information network dinet Volunteer Opportunities at DINET We re looking for readers on our forum DINET is looking for volunteers to help us keep the forum a positive experience for its 4 500 members and growing Readers are responsible for viewing posts and material If you are interested in becoming a Forum Reader please contact us to complete a volunteer application We look forward to hearing from you Contact dinetandforuminfo dinet org Do you have a passion for the written word DINET s quarterly newsletter has room for a few new writers Applicants do not need to have professional writing experience but do need solid language and grammar skills This is a wonderful opportunity to flex your creative muscles and provide information and support to the dysautonomia community If you are interested in joining our team please contact webmaster dinet org An application and at least 2 writing samples will be required Studies Brain fog inflammation and obesity key aspects of neuropsychiatric disorder improved by luteolin From Frontiers in Science Brain fog is a constellation of symptoms that include reduced cognition inability to concentrate and multitask as well as loss of short and long term memory Brain fog characterizes patients with autism spectrum disorders ASDs celiac disease chronic fatigue syndrome fibromyalgia mastocytosis and postural tachycardia syndrome POTS as well as minimal cognitive impairment an early clinical presentation of Alzheimer s disease AD and other neuropsychiatric disorders Brain fog may be due to inflammatory molecules including adipocytokines and histamine released from mast cells MCs further stimulating microglia activation and causing focal brain inflammation Recent reviews have described the potential use of natural flavonoids for the treatment of neuropsychiatric and neurodegenerative diseases The flavone luteolin has numerous useful actions that include anti oxidant anti inflammatory microglia inhibition neuroprotection and memory increase A liposomal luteolin formulation in olive fruit extract improved attention in children with ASDs and brain fog in mastocytosis patients Methylated luteolin analogs with increased activity and better bioavailability could be developed into effective treatments for neuropsychiatric disorders and brain fog To read

    Original URL path: http://www.dinet.org/index.php/information-resources/knowledge-base/26-paf (2016-04-26)
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  • Knowledge Base
    fatal illness and patients usually die within ten years of onset Our website provides a page full of links to multiple system atrophy resources on the Internet References 1 MEDLINEPlus Heath Information 2003 Multiple System Atrophy Retrieved September 8 2003 from http www nlm nih gov medlineplus ency article 000757 htm 2 Polinsky R J 1996 Multiple system atrophy and Shy Drager syndrome In Robertson P A Low R J Polinsky Eds Primer on the autonomic nervous system p 222 San Diego CA Academic Press 3 Rehman H U 2001 Multiple system atrophy Postgraduate Medical Journal 77 908 379 382 In The News Be brave Give yourself or someone you love a gift to support and inspire Gorgeous bracelets necklaces earrings even scarves all engraved with the words be brave So many products to choose from in so many colors and styles These beautiful accessories are a reminder to be brave something we all need from time to time Best of all 10 from the sale of every bravelet goes directly to DINET to help us continue our mission to support and educate Find your special style and support DINET Buy one or two today Visit DINET s online kiosk on the Bravelets page at www bravelets com bravepage dysautonomia information network dinet Volunteer Opportunities at DINET We re looking for readers on our forum DINET is looking for volunteers to help us keep the forum a positive experience for its 4 500 members and growing Readers are responsible for viewing posts and material If you are interested in becoming a Forum Reader please contact us to complete a volunteer application We look forward to hearing from you Contact dinetandforuminfo dinet org Do you have a passion for the written word DINET s quarterly newsletter has room for a few new writers Applicants do not need to have professional writing experience but do need solid language and grammar skills This is a wonderful opportunity to flex your creative muscles and provide information and support to the dysautonomia community If you are interested in joining our team please contact webmaster dinet org An application and at least 2 writing samples will be required Studies Brain fog inflammation and obesity key aspects of neuropsychiatric disorder improved by luteolin From Frontiers in Science Brain fog is a constellation of symptoms that include reduced cognition inability to concentrate and multitask as well as loss of short and long term memory Brain fog characterizes patients with autism spectrum disorders ASDs celiac disease chronic fatigue syndrome fibromyalgia mastocytosis and postural tachycardia syndrome POTS as well as minimal cognitive impairment an early clinical presentation of Alzheimer s disease AD and other neuropsychiatric disorders Brain fog may be due to inflammatory molecules including adipocytokines and histamine released from mast cells MCs further stimulating microglia activation and causing focal brain inflammation Recent reviews have described the potential use of natural flavonoids for the treatment of neuropsychiatric and neurodegenerative diseases The flavone luteolin has numerous useful actions that include anti

    Original URL path: http://www.dinet.org/index.php/information-resources/knowledge-base/27-msa (2016-04-26)
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  • Knowledge Base
    eventually it became outdated and some portions no longer functioned well Michelle had hoped to build a new website but was unable to complete this project before stepping down as president When I became president in the fall of 2011 one of my dreams was to oversee the creation of a new website Initially I had a difficult time finding a web design company that was the right fit for DINET s particular needs Nina Wilde recommended Bray Industries to me and they were just the web design company we needed On behalf of the DINET community I would like to extend a huge thank you to Charlie Bray for building our new website I have greatly enjoyed working with him on this project He truly went the extra mile for us and did a fantastic job We will continue to work with Bray Industries in the future in order to maintain a website that serves the dysautonomia community well We hope that this new website will be beneficial for all of you and we hope that DINET will be able to continue to serve the dysautonomia community for years to come Enjoy the new website Rachel Lundy DINET President In The News Be brave Give yourself or someone you love a gift to support and inspire Gorgeous bracelets necklaces earrings even scarves all engraved with the words be brave So many products to choose from in so many colors and styles These beautiful accessories are a reminder to be brave something we all need from time to time Best of all 10 from the sale of every bravelet goes directly to DINET to help us continue our mission to support and educate Find your special style and support DINET Buy one or two today Visit DINET s online kiosk on the Bravelets page at www bravelets com bravepage dysautonomia information network dinet Volunteer Opportunities at DINET We re looking for readers on our forum DINET is looking for volunteers to help us keep the forum a positive experience for its 4 500 members and growing Readers are responsible for viewing posts and material If you are interested in becoming a Forum Reader please contact us to complete a volunteer application We look forward to hearing from you Contact dinetandforuminfo dinet org Do you have a passion for the written word DINET s quarterly newsletter has room for a few new writers Applicants do not need to have professional writing experience but do need solid language and grammar skills This is a wonderful opportunity to flex your creative muscles and provide information and support to the dysautonomia community If you are interested in joining our team please contact webmaster dinet org An application and at least 2 writing samples will be required Studies Brain fog inflammation and obesity key aspects of neuropsychiatric disorder improved by luteolin From Frontiers in Science Brain fog is a constellation of symptoms that include reduced cognition inability to concentrate and multitask as well as loss

    Original URL path: http://www.dinet.org/index.php/information-resources/knowledge-base/29-dinet (2016-04-26)
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  • Welcome To Our Knowledge Base
    upper right If you know of a good resource to link here please send an email to rachel dinet org Thank You In The News Be brave Give yourself or someone you love a gift to support and inspire Gorgeous bracelets necklaces earrings even scarves all engraved with the words be brave So many products to choose from in so many colors and styles These beautiful accessories are a reminder to be brave something we all need from time to time Best of all 10 from the sale of every bravelet goes directly to DINET to help us continue our mission to support and educate Find your special style and support DINET Buy one or two today Visit DINET s online kiosk on the Bravelets page at www bravelets com bravepage dysautonomia information network dinet Volunteer Opportunities at DINET We re looking for readers on our forum DINET is looking for volunteers to help us keep the forum a positive experience for its 4 500 members and growing Readers are responsible for viewing posts and material If you are interested in becoming a Forum Reader please contact us to complete a volunteer application We look forward to hearing from you Contact dinetandforuminfo dinet org Do you have a passion for the written word DINET s quarterly newsletter has room for a few new writers Applicants do not need to have professional writing experience but do need solid language and grammar skills This is a wonderful opportunity to flex your creative muscles and provide information and support to the dysautonomia community If you are interested in joining our team please contact webmaster dinet org An application and at least 2 writing samples will be required Studies Brain fog inflammation and obesity key aspects of neuropsychiatric disorder improved by luteolin From Frontiers in Science Brain fog is a constellation of symptoms that include reduced cognition inability to concentrate and multitask as well as loss of short and long term memory Brain fog characterizes patients with autism spectrum disorders ASDs celiac disease chronic fatigue syndrome fibromyalgia mastocytosis and postural tachycardia syndrome POTS as well as minimal cognitive impairment an early clinical presentation of Alzheimer s disease AD and other neuropsychiatric disorders Brain fog may be due to inflammatory molecules including adipocytokines and histamine released from mast cells MCs further stimulating microglia activation and causing focal brain inflammation Recent reviews have described the potential use of natural flavonoids for the treatment of neuropsychiatric and neurodegenerative diseases The flavone luteolin has numerous useful actions that include anti oxidant anti inflammatory microglia inhibition neuroprotection and memory increase A liposomal luteolin formulation in olive fruit extract improved attention in children with ASDs and brain fog in mastocytosis patients Methylated luteolin analogs with increased activity and better bioavailability could be developed into effective treatments for neuropsychiatric disorders and brain fog To read the full article www ncbi nlm nih gov pmc articles PMC4490655 The BIG POTS Survey Vanderbilt University and Dysautonomia International have partnered to launch the largest

    Original URL path: http://www.dinet.org/index.php/information-resources/knowledge-base/120-knowledge-base-footer (2016-04-26)
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  • Invisible Battle - By April
    on the couch I had no energy to even move I kept fighting and made my way the Cleveland Clinic in Ohio The doctor I saw there ran tons of tests and said the same thing my original doctor had said IST Now my symptoms have grown and became much worse I m going to go back to the first doctor that I saw in hopes for better answers This is where I stand now with everything lost and confused hoping for just a part of my life back I have tried every medication in the book but nothing seems to help me Shortly after getting sick I had to have my gallbladder taken out For some unknown reason it became very sick and was not functioning at all I suffer from the same symptoms as others on DINET constant nausea dizziness palpations chest pain fatigue tremors trouble sleeping trouble breathing and many more symptoms that come and go I ve learned to enjoy the small things in life and when I have one of my very rare good days I surround myself with friends and family and enjoy every moment of it Without the love of them and my mom pushing me to keep going I might have given up a long time ago This condition is hard to live with and hard to explain to others They don t understand it or even believe it s as bad as I say Don t ever give up the fight guys Enjoy the small moments Thank you for reading my story In The News Be brave Give yourself or someone you love a gift to support and inspire Gorgeous bracelets necklaces earrings even scarves all engraved with the words be brave So many products to choose from in so many colors and styles These beautiful accessories are a reminder to be brave something we all need from time to time Best of all 10 from the sale of every bravelet goes directly to DINET to help us continue our mission to support and educate Find your special style and support DINET Buy one or two today Visit DINET s online kiosk on the Bravelets page at www bravelets com bravepage dysautonomia information network dinet Volunteer Opportunities at DINET We re looking for readers on our forum DINET is looking for volunteers to help us keep the forum a positive experience for its 4 500 members and growing Readers are responsible for viewing posts and material If you are interested in becoming a Forum Reader please contact us to complete a volunteer application We look forward to hearing from you Contact dinetandforuminfo dinet org Do you have a passion for the written word DINET s quarterly newsletter has room for a few new writers Applicants do not need to have professional writing experience but do need solid language and grammar skills This is a wonderful opportunity to flex your creative muscles and provide information and support to the dysautonomia community If

    Original URL path: http://www.dinet.org/index.php/community/member-stories/114-invisible-battle-by-april (2016-04-26)
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  • My Personal POTS Story
    did the doctors Only my mom believed me because she saw me every day and saw the drastic change in my health and my inability to live a normal life She saw my rapid decline I had every medical test under the sun blood work CAT scans of my brain MRIs fluid IVs you name it Nothing showed anything I thought maybe I had some undetected brain cancer that was causing me to be so dizzy I did many Internet searches every evening and then I found the POTS Place website All of my symptoms matched the criteria for dysautonomia This site was where I found a hospital with a doctor in my area It was the best thing I got a tilt table test and it was confirmed that I indeed had POTS Finally I was put on Florinef Celexa potassium and midodrine and was finally able to get rid of the dizziness and get my life back For 6 years now I have been living with this illness and I know it is going to be permanent I have been working full time for the past 3 years but I want to go on disability because on the days I work I am bedridden as soon as I come home and the days I don t work I am in bed all day just to recover from the 5 days I did work The work situation is so fatiguing stressful and overwhelming for me and is depleting my quality of my life even further Although I am much better than I was without the medications I still do not have a normal quality of life and still have a high degree of orthostatic intolerance and a high need to sleep and lie down more than the average person I am lucky that I did improve as much as I did but I know that POTS will always be a battle for me to fight I get dehydrated very easily and constantly need to be diligent with the fluids I cancel on things a lot and I feel bad but I am too tired and sick feeling to attend 98 of the plans I make with people This illness ruins life I know it could be worse and has been worse but I know I will NEVER enjoy the health I used to have However I guess everyone has challenges and problems and this is mine In The News Be brave Give yourself or someone you love a gift to support and inspire Gorgeous bracelets necklaces earrings even scarves all engraved with the words be brave So many products to choose from in so many colors and styles These beautiful accessories are a reminder to be brave something we all need from time to time Best of all 10 from the sale of every bravelet goes directly to DINET to help us continue our mission to support and educate Find your special style and support DINET Buy one or

    Original URL path: http://www.dinet.org/index.php/community/member-stories/89-my-personal-pots-story (2016-04-26)
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  • Dianne's Story: Learning Self-Management
    drug approaches to managing dysautonomia If anyone sees Dr Grubb please give him my thanks and best wishes and tell him an Australian woman is grateful for his work In case it is helpful to anyone I ve listed below the approaches that have worked well for me I ve also tested every possible alternative therapy I can honestly say that I ve had benefit only from meditation for relaxation cranial osteopathy for musculoskeletal problems and simple treatments for nausea Symptom Management Fatigue General management of my illness helps to minimize fatigue I reduce fatigue by getting plenty of sleep and rest as well as prevention and treatment of my other symptoms Laying flat also eases most of my symptoms particularly fatigue Other approaches I ve found effective include Fluid intake Drinking fluids helps I have little or no thirst so I find it a chore I always thought that the need for fluids was exaggerated At first trying to increase my fluid intake I would drink 1 5 liters through the morning and then think phew I m done It became clear that I was feeling well in the morning but really fatigued for the rest of the day To someone who feels thirst it makes sense to space out fluids I was really slow to work that out Now I have a glass of water on rising and another at 9 AM 12 noon 3 PM 6 PM and around 8 PM Diet Salt really does help I salt my food and if I m particularly fatigued a salt tablet or salty snack is often helpful Also I m not fanatical about it but I generally don t eat big carbohydrate based meals of pasta rice bread or potatoes I ve only heard of a couple of other people with dysautonomia feeling more fatigued after eating carbohydrates 2 but it s also the case for me Compression hose Wearing compression hose stops blood from settling in the legs on standing I use Venosan stockings They don t give maximum compression but I can wear them to work without looking weird They are expensive and hard to get on but I m more fatigued without them Physical inactivity I always felt fabulous when I was exercising but much more fatigued afterwards particularly when I started collapsing My fatigue increased if I persisted with exercise and my cardiac symptoms worsened chest pain irregular heart beat I avoid exercise now and rest often I also have two month long breaks every year to rest Night sweats On the advice of an immunologist in my late thirties I started taking a small dose of infant ibuprofen at bedtime This stopped the night sweats and gave me better unbroken sleep After many years my night sweats stopped about a year ago so I stopped the medication Soreness at the back of the head and neck pain When my illness is very active I get a deep soreness at the back of my head and neck pain that makes it hard to turn my head These symptoms are easily treated and I feel much less fatigued without them My osteopath can fix the neck pain but not the soreness at the back of my head my neurological physiotherapist can fix both This year I ve been seeing both therapists every 1 2 months to try to deal with these symptoms early and prevent them from occurring Respiratory symptoms and chest discomfort At my sickest I woke at night gasping as though my body had forgotten to take a breath At other times it s felt as though the muscles at the back of my throat have collapsed blocking my airway For years I expected to suffocate in my sleep I can also feel as though I m not getting enough oxygen as though my lungs aren t expanding or I m trying to suck oxygen out of a thick fog During my last exacerbation my general practitioner tried treating me with Lexapro it gave me insomnia stomach pain and tinnitus even at a quarter dose but it quickly and effectively relieved my respiratory symptoms I managed to take it for around six weeks My respiratory symptoms are also eased by lying flat These symptoms are accompanied by chest discomfort and sometimes a mild sensation of choking it s as though someone has stuck a garden hose in my chest and overfilled my chest cavity During one exacerbation of my illness an echocardiogram showed a bit too much fluid around my heart but it is unclear whether this was at all relevant The chest discomfort is also relieved by Lexapro and lying flat Nausea I ve found ginger helps I buy ginger chews at my health food shop I ve also found help from peppermint oil smelling it It helps to eat small amounts often My physiotherapist can also relieve this symptom by working the thoracic area of my back around T12 Things I haven t worked out The sicker I am the more difficulty I have with my speech I have problems with word finding and slurring sometimes I put the wrong words in sentences and sometimes I structure my sentences as though English is my second language I ve only had panic attacks when trying to speak I think I ve tried everything to fix it nothing has worked My bladder symptoms resolved slowly after my last exacerbation I don t know why these symptoms were unexpected and I thought they d be permanent Small seizures came and went without explanation over an 18 month period in my early forties Sometimes my heart rate is irregular irrespective of how well I manage my illness and this increases fatigue If my heart races for whatever reason sometimes my heart rate stays up for hours My brain doesn t send the message that it s time to slow down and I haven t yet found a way to settle it myself My gut doesn t

    Original URL path: http://www.dinet.org/index.php/community/member-stories/88-dianne-s-story-learning-self-management (2016-04-26)
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