archive-org.com » ORG » D » DINET.ORG

Total: 119

Choose link from "Titles, links and description words view":

Or switch to "Titles and links view".
  • Learning Patience and Resourcefulness: My Slow Steady Recovery From POTS
    at the right time as well as making healthy amounts of estrogen testosterone and progesterone I was getting closer to recovery but I still could not stand on my feet for more than 30 45 minutes without getting tired I had visited numerous MD s and received special stockings I had refused to take SSRI s because I did not like the way they made me feel So I began to study natural medicine I got my NMD degree and had a test on my neurotransmitter levels I found that I was low in serotonin and epinephrine while high in norepinephrine I started taking natural supplements to raise serotonin and gaba I also worked to help my norepinephrine and epinephrine levels through diet and supplements I d greatly improved by the first neurotransmitter retest I haven t done a second retest yet but my moods are great I m sleeping better and I rarely feel the fatigue in my legs that used to be my constant companion I ll send an update when and if I get my norepinephrine and epinephrine levels balanced properly This past spring a few months after working to balance my neurotransmitters I decided to try something novel since I had exhausted nutritional approaches and was still unable to exercise The beautiful warm weather had me longing to be outside again taking walks in the country and riding my bike as I d done before the fast in 2000 So I took a chance and drove to Southern Ohio to explore an alternative treatment sound healing What a great blessing this was to me The people there spent more time with me than any doctor ever had about 8 hours at my first appointment They tested my voice analyzed it on their computers discussed my symptoms and treatments etc They finally put together a program of tones and had me listen to them a few times in the evening before sleeping and the next morning as well They retested me in the morning to see if I was improving and sent me home with a box that generated my personal healing tones The first day home I felt myself detoxing slightly achy flu like but the symptoms would go away if I didn t listen to the tones So I was able to control how rapidly I detoxed The next evening I walked into the kitchen at 10 p m with the intention of making gluten free cornbread I had that much energy in the evening and fortunately had the good sense to restrain myself and go to bed instead Two days later I was visiting my parents in West Virginia and I went on two hikes I had to rest often but I still hiked up a mountain for over an hour across a ridge for 30 minutes and then down again I was not a basket case when I got home Since that time I have been continually working with new sound tones as

    Original URL path: http://www.dinet.org/index.php/community/member-stories/65-learning-patience-and-resourcefulness-my-slow-steady-recovery-from-pots (2016-04-26)
    Open archived version from archive


  • My New Son
    stand for 10 minutes and I had no idea The doctor had said that this condition is often caused by a virus Mark had a serious virus when he was about 1 year s old If POTS was a result of this he had poor circulation for almost all his life I felt terrible The doctor prescribed florinef and proamatine The effect of the medicine was remarkable Almost immediately we noticed a change in Mark s focus He would remember things we asked him to do even when we asked him to do something later in the day He seemed much more in tune with the activities around him in conversations in watching sports in whether it was time for him to get ready whatever was happening He had always been a bit oblivious to things around him but I assumed it was just his absent minded professor kind of personality He no longer takes a deep breath before he speaks He still paces a bit but I think that is habit and it seems to be diminishing When he runs in sports he no longer looks pained He gets tired but he is much more like a normal kid He no longer runs moving his head from side to side which may have been another action to get blood to his brain His sleeping became much more normal His whole life he has been a wiggly sleeper ending up sleeping with his head by the foot of the bed or sprawled sideways in bed I had always assumed it was just his sleeping pattern Now he goes to sleep much more easily wakes up with his head on the pillow and is cheery and alert He had always been a bit grumpy and hard to wake up Even his posture has improved I m not sure how it s related but he definitely stands up straighter instead of slouching In short it s like having a new son I give him so much credit for being successful in school and sports for many years when it s obvious to me that he hadn t been getting adequate blood to his brain Now I think life will be easier for him and he ll be able to succeed even more I feel so incredibly grateful that we happened to walk into a cardiologist s office that specializes in POTS that was completely luck or maybe a guardian angel I have now read so many stories of people suffering much more severe symptoms and wandering from doctor to doctor for months or years I am also so thankful we caught this now rather than years from now I think that may be why the medication is working so well The doctor feels that Mark will not need to be on the medication forever maybe for several years at most He will continue to monitor Mark and encouraged him to continue in sports If he continues to stay so focused we will

    Original URL path: http://www.dinet.org/index.php/community/member-stories/64-my-new-son (2016-04-26)
    Open archived version from archive

  • Nightmare, Will I Ever Wake Up?
    that I will be sent to another specialist that specializes in this condition in hopes some relief can be given I have also been told that this condition can either be a mild to moderate inconvenience in life or progressive and fatal No one really knows is what I am told Accept it take it one day at a time and live the best you can is the advice I get I do my best with this but some days are so depressing because the pain is so bad that all I can do is focus on getting out of it Every day I ask why What am I doing wrong What have I done wrong What is causing it Some days when I feel better I think I am cured and life will be getting back to normal and then BAM another slap in the face symptoms are back and I feel like crap I struggle with this every day and only hope that it will eventually subside At this time I really don t know what is going to happen however I know that everything in this world happens for a reason I am just grateful for this day that I have 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

    Original URL path: http://www.dinet.org/index.php/community/member-stories/63-nightmare-will-i-ever-wake-up (2016-04-26)
    Open archived version from archive

  • Confessions of a Mitochondriac
    before jumped out at me Treating allergies might help one to feel better It has been reported that people with POTS lose their ability to vasoconstrict Grubb 2000 This means that many POTS patients have problems with their blood vessels being excessively dilated Histamine is known to dilate blood vessels which can further lower blood pressure in POTS patients Allergies may also stimulate the sympathetic nervous system Many POTS patients have overactive sympathetic nervous systems and benefit from avoiding potential sympathetic stimulants Wow allergies What a concept I got some over the counter generic loratadine and some cromolyn sodium nasal spray and my pulse went back to normal within 48 hours So thanks POTS Place I was able to figure out the cause and solution to my problem much faster than I could get a doctor s appointment A friend of mine who is a doctor said that by the time I got an appointment the pollen counts would probably have dropped and I d have looked like a hypochondriac again Several physicians have suggested that I am actually the picture of health and just go to doctors appointments for attention or that I am just depressed I am not depressed I am frustrated by the devastating toll that this illness has had on my life my family and my career I am not desperate for attention I am desperate for proper medical care The next time I go in for an appointment I ll take a printout of stuff from the Web site with me 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

    Original URL path: http://www.dinet.org/index.php/community/member-stories/62-confessions-of-a-mitochondriac (2016-04-26)
    Open archived version from archive

  • Debbie's Life in a Not so Nutshell
    was going to either pass out or throw up Someone took me back to the blood center and my BP was 180 100 with a pulse of 180 I have never felt so terrible I went to the doctor and he thought it might be a fluky thing but he tested me for pheochromocytoma It was normal of course I started having these episodes all the time Always the same pressure in my throat and head BP skyrocketing nausea and then after about 1 2 to one hour everything calming down but leaving me completely exhausted I got an event monitor and it just showed sinus tachycardia and pac s The doctor put me on three different meds I didn t tolerate and then he tried atenolol 12 5 I felt much better except I was even more fatigued and found myself waking up at night feeling like I hadn t taken a breath in five minutes But it did curb those awful attacks so I just dealt with it In the fall of 2001 I started becoming very short of breath with the slightest exertion and was having a lot of breakthrough tachycardia I really felt awful I had to cut back on my hours I decided I was just fat and out of condition so I bought an elliptical machine to lose weight and get in shape That was in November In March 2002 I was still only doing three minutes a day on that darn machine I got so short of breath and tachycardic I just couldn t breathe I went to see my doc and he started what became every test known to man on me I had a thallium treadmill which showed ischemia This led to a heart cath that showed normal vessels My ejection fraction was 80 which is on the high side I did a cardiopulmonary treadmill and it was discovered that my heart rate at rest was 120 but one minute after starting the treadmill it was 190 The doctor said stop He told my doctor there was something wrong with my sinus node That I was not conditioned but it would be impossible for me to get conditioned They decided I had Inappropriate Sinus Tachycardia Then on to an electro physiologist who actually was the first to really discuss in depth autonomic dysfunction I had never heard of it and my internist wasn t very familiar with it I had a stress and non stress echo which showed hypertrophy from having so much tachycardia and HTN and a mild mitral regurge I had a tilt table in February 2003 Although it was negative my heart rate shot sky high as did my blood pressure So I ve never fainted This drove the cardiologist crazy because he said everything pointed to POTS but I was never syncopal or even pre syncopal They decided I should have an ablation because my heart was already starting to suffer from the prolonged tachycardia I did

    Original URL path: http://www.dinet.org/index.php/community/member-stories/61-debbie-s-life-in-a-not-so-nutshell (2016-04-26)
    Open archived version from archive

  • Kathy's Story
    never heard of it It wasn t until this past December that I knew what had caused all the problems in the first place I have a subdivision of POTS known as Joint Hypermobility Syndrome It means that there is not enough firm collagen in my joints and blood vessels for them to perform accurately The reason that it wasn t discovered earlier is that the muscles in my legs were overcompensating for the lack of firm collagen When I became unconditioned due to the blood clots that s when all the problems began I believe that more needs to be done to get the word out about these syndromes Until this all happened to me no one I knew had ever heard of it You see people on talk shows all the time discussing many different diseases and syndromes I wish that we could use these avenues to inform the world Without the information there is no hope for better care for us Getting the word out may also help someone out there who suffers from these same symptoms but also has no idea this syndrome exists Many cardiologists don t even know about it Remember if not for my family physician I have no idea if I would be back to work right now or not If there is anything I can do to help pass along this information I would be more than happy to do it I just don t know where to start Any help would be appreciated I can be reached at KATHOW23 aol com if anyone has any ideas on how to spread the word about this syndrome For those of you who also suffer with the symptoms of this syndrome my heart is with you and may the good Lord bless us all 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

    Original URL path: http://www.dinet.org/index.php/community/member-stories/60-kathy-s-story (2016-04-26)
    Open archived version from archive

  • Katherine’s story
    very little else Every doctor I saw told me I had severe post partum depression and needed treatment I finally agreed to see a psychiatrist who determined I had no depression but an undiagnosed medical condition Eventually I became so weak I was unable to walk and at times unable to sit up My husband carried me to the ER literally on three occasions On the third occasion I was admitted to the hospital and finally diagnosed with POTS My doctor a partner of the cardiologist who diagnosed me with lack of exercise and anxiety started me on 20 mg of Prozac and 10 mg of Pindolol By August 2003 I was stronger and back at work part time I have relapses of the symptoms that scare me and I am not as well as I was prior to pregnancy I have limited exercise tolerance and get tired easily I do yoga every day and walk several days a week with my daughter in a stroller but anything more aerobic still seems a strain I find that eating too much sugar not getting adequate sleep too much stress a minor medical procedure any of these things can set me back Overall I feel optimistic about my long term recovery although I have also accepted that I have to make some lifestyle changes I have also learned that illness can be a blessing I have discovered that it is possible to take one day at a time sometimes just one breath at a time although this is not always easy I have found how important my family is to me and what special people they are The world around me seems more alive and intense than ever and I take pleasure in the small details of life that I might have otherwise taken for granted Life seems so precious and the ability to enjoy it is a blessing 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

    Original URL path: http://www.dinet.org/index.php/community/member-stories/59-katherine-s-story (2016-04-26)
    Open archived version from archive

  • Emma's Story
    heat tests I stayed in hospital for a year and three months with this condition where I had physio medication trails and time to help me adapt to being in a wheelchair I have this condition so badly that I use a wheelchair all the time as I blackout as soon as I go to stand I take 97 tablets a day to try and maintain a blood pressure as it drops to as low as 49 60 I take beta blockers to slow my heart rate and other medications to increase my salt levels etc The dyautonomia has affected my blood pressure heart rate stomach I now have to have a syringe driver set up every night with anti sickness medication as my stomach no longer empties properly I am waiting for a drainage procedure to be done but there is a problem with my being put under anesthetic I have a long term catheter due to retention problems I know the above doesn t sound that hopeful but I must add that I am now twenty I have an adapted bungalow and have some really great caregivers I am back at work now and studying for a degree in alcohol and drug counseling I am very happy and making the best of the situation 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

    Original URL path: http://www.dinet.org/index.php/community/member-stories/58-emma-s-story (2016-04-26)
    Open archived version from archive



  •