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  • Never Accept the Unacceptable
    test actually flat lines as well as see sawing its way up to 228 170 I have to use a wheelchair on some days because I cannot stand up at all but I only resort to it when I have no other choice I can t digest wheat or lactose properly anymore I now suffer very occasionally form hemiplegic migraines where my body goes numb down one side I have Ehlers Danlos syndrome too which explains the aching joints I ve had for as long as I can remember Having answers like this is satisfying but it reflects one way that my glass is half empty those diagnoses do not bring a cure although my health seems to go in cycles I can be fine just like I ve never been ill and then crash in real style Personally I think there are two responses to this kind of predicament The first is the easiest I could have lain in bed crying about the things I can t do and the unfairness of it all The second is much harder but I try to abide by it I try never ever to give in to the POTS no matter what it does to me I m at Oxford University now having secured an unconditional offer studying a subject I love with some amazing academics Life here has been a lot tougher than I ever imagined I ve found myself in hospital 6 times in the last 6 weeks alone and I never know what tomorrow will bring I ve had classes where I ve given presentations lying on the floor with my legs up on the table I ve had days where I ve had to read for essays while lying on a hospital trolley There are days when I can t focus work well or even move But I won t let go of my dreams I will complete this degree like I did my St Andrews one well The POTS won t win I will I may not be able to play hockey go to the gym or swim like I used to but my brain sure is getting a fantastic workout The crux of my story is this do not accept the unacceptable Had I listened to doctors before I found the UK s only autonomic specialist I would have believed I had M E or some other inaccurate diagnosis You know your body better than anyone Keep fighting for answers And don t ever think that POTS will stop you from living your life It might alter when you do the things that matter but keep pushing and it won t stop you from doing them I am bigger than this condition and I refuse to let it define me As Livy himself said Intelligence can leap the hurdles which nature has set before us In The News Be brave Give yourself or someone you love a gift to support and inspire Gorgeous bracelets necklaces earrings

    Original URL path: http://www.dinet.org/index.php/community/member-stories/71-never-accept-the-unacceptable (2016-04-26)
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  • No, it's Not Anxiety, Panic Attacks or Depression
    I was then diagnosed with POTS My heart rate went to 180 just standing my blood pressure took off to 156 90 and then crashed fast This is what caused me to collapse I was put on a beta blocker to help lower my heart rate and also told to wear compression socks to help with the passing out I still had weakness in my muscles and joints I noticed I would get very sick on certain foods such as sugars breads and cereals I then found out I have celiac disease which means I am gluten intolerant I had to go on a gluten free diet This has helped me a lot although I still suffer with muscle weakness and injuries to my ligaments and I have severe muscle cramping and shooting pains I have trouble climbing stairs as well and have difficulty holding my arms out I am also off balance and have a hard time walking too far I have good days and bad but I do have to say that with my diet change beta blocker and compression socks I am no longer stuck in bed or my recliner all day As for my muscles and ligaments I am still awaiting a diagnosis as to what is going on I am out doctor shopping again hoping one will be able to give me answers It s unfortunate that some of us have to go through many doctors and hear it s depression or anxiety If you are relating to any of this I do hope you stay strong emotionally and keep pushing to find the right doctor to give you answers We all get frustrated and depression can happen although with most of us it is situational We have depression because our health has changed It s touch and go through a health change and I know we could not go through it all alone I am thankful for the support groups that are available and also for the medications I feel that if antidepressants and pain medications can help than people should take them It s not worth suffering through this without help be it medical physical or emotional Always remember you know your body best There is hope I am not back to normal and that s okay I have learned to do many different hobbies I would of never picked up had I been healthy A change in life can be hard but at the same time it can be a blessing I feel God has slowed my life down to enjoy the important things in life 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

    Original URL path: http://www.dinet.org/index.php/community/member-stories/70-no-it-s-not-anxiety-panic-attacks-or-depression (2016-04-26)
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  • Doors Keep Closing! Will One Open Up For Me?
    would take off racing and I would feel like I was going to pass out I began to feel dizzy all the time I found that summer I couldn t be out in the heat it made me feel so sick I was starting to feel like I was losing it Again I went to the doctors and they said just to make sure I was drinking enough In September of 2003 I found my self in treatment again only this time they did an EKG on me while I was there They found that my heart was racing and it was going too high So they said I should have an EPS study and find out what s going on So in January of 2004 I underwent an EPS study While they where in my chest they went ahead and did an ablation in hopes this would help The ablation took 6 ½ hours When they where done and I came to they told me I should start getting better soon The first few weeks I did but then I began to feel more tired and dizzy again This time I went back to the doctors and they said lets give it time The only problem with this was I wasn t getting better On July 9 2004 while driving to work I passed out I put my car in the ditch This time my husband pushed the doctors and said there is something very wrong with Amy So they admitted me for 24 hour monitoring Within 30 minutes of being there I had the staff very worried My heart rate would drop down into the 30 s They said I needed to have another EPS study ablation and pacemaker implant So on July 14 2004 they placed a dual chamber pacemaker in my chest The doctors told me I should feel better soon and get back to my old self again I was so relived and so ready to get back to my old life before all this started Little did I know that this was just the start of my problems I never felt better after the pacemaker was put in In fact I began to get worse I still felt dizzy and was still passing out I began to start getting headaches leg pain chest pain side pain neck pain began to stop sleeping and my b p began to run very low Due to the fact things where not getting better my family doctor got involved for the next eight months I went to the University of Iowa Mayo and Cleveland Clinic After all the hospital stays and tests they found out that I had POTS and NCS low blood volume and rapid blood flow So it was nice to know I was not crazy and that it wasn t in my head After trying many drugs and not getting better my doctor told me it s time to stop working and slow down and

    Original URL path: http://www.dinet.org/index.php/community/member-stories/69-doors-keep-closing-will-one-open-up-for-me (2016-04-26)
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  • Member Stories
    I didn t want to do much of anything I couldn t stand for periods of time I felt lazy and different I thought it was due to starting menstruation and painful periods So I just learned to cope Read more One Day at a Time Candace s Story By Candace August 2007 My name is Candace I am 18 years old and was diagnosed with POTS autonomic dysfunction in November of 2006 at the Mayo Clinic in Rochester Minnesota I hope my story can encourage someone I was born on March 9 1989 along with my twin sister Cassie We were 10 weeks early and my lungs weren t fully developed so I was hospitalized until I was healthy enough to go home and be with my sister I was generally a healthy child growing up Around the age of 12 I was diagnosed with severe asthma and was put on medication My asthma was controlled and things went smoothly as I entered high school During my fist year of high school I was involved in many sports I was in cheerleading basketball volleyball softball and track I excelled in sports and academics I particularly excelled in track going to the state finals as a freshman in three of my four events I still can t believe how much energy I always had I had two sports practices homework every night not to mention games and meets Read more Candace s Story My Life After Gastric Bypass By Peter Maerkel July 2007 Hello my name is Peter Maerkel I am 40 years old at the time of this writing I have POTS I was diagnosed October 20 2006 at St Francis Hospital in Hartford CT This is my story I have been overweight all my life starting shortly after puberty I am 6 5 tall and in August 2005 I weighed 412 lbs I was out of work from my lucrative job at Kaman Aerospace as an NDT inspector I did x ray and ultrasound on aerospace components I was on Social Security Disability for two herniated discs in my back I had terrible sleep apnea 93 episodes in an hour during my sleep study I was also pre diabetic and had been told my knees would need to be replaced sooner than normal due to my weight Yes I had tried every diet known to man Nothing worked So I started down the road to a gastric bypass I remember my weight in August 2005 because that was when I signed the documents to start the gastric bypass process and they needed my exact weight Well on December 29 2005 I went under the knife The surgery went extremely well There were some minor issues but nothing to worry about so I was told You see I had done a ton of research online and asked a bunch of what I thought were well informed questions Even my surgeon was impressed and told a medical student This is the type of patient you want one that is well informed I did not go into this blindly I had many discussions with my PCP at the time and he told me If I were sitting where you are I would have the surgery He told me If you can get over the risks death being the big one it will be OK This was partly true partly not as I now know You see in all the research I had done I had never once read or heard about getting potential nerve damage or POTS from losing weight so fast Now I know Read more My Life After Gastric Bypass Living with a Nightmare POTS B y Karen Brank Toledo Ohio July 2007 Hello I am a 37 year old African American female who was diagnosed with POTS in July of 2005 In 1997 I began having health problems I was also under a tremendous amount of stress in my job at a mental health agency a single mother and in graduate school My job was so demanding I had to work 12 16 hour days to get everything done Soon after my health problems began my supervisor moved to a different department I got a new supervisor and she was not supportive She allowed a new co worker to be verbally abusive and rude to me and never did anything about it even though I tried to do things to help resolve the matter I began to have heart palpitations chest pain muscle pain low energy dental problems swollen gums constant bleeding and pain headaches urinary tract infections blood in urine as well as insomnia I did try to exercise 3 5 times per week but noticed that I could not do it due to lack of energy and neck pain I felt as if I had pulled a muscle in my neck In 1999 I transferred to a different department at work but I still experienced stress from management From my experience in the mental health profession most of my supervisors were culturally insensitive and held a superior attitude My migraines became worse I also suffered dizziness very low energy and fatigue My doctor informed me that I had tested positive for Epstein Barr virus I was placed on lorazepam to help with sleep I had previously felt wired but extremely tired because I could not sleep I had some nausea almost daily I was a size six and I began gaining weight by the end of the year I wore a size 14 I was taken off work for 30 days In that time I was able to find another job Read more Living with a Nightmare POTS My Life As I Know It Now by Lisa January 2006 Before this experience I had a different perception of doctors I never doubted them I was lucky to have only my regular checkups and for my few small medical issues the doctors were always able to come

    Original URL path: http://www.dinet.org/index.php/community/member-stories?start=7 (2016-04-26)
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  • Member Stories
    to be other jobs that paid as much in the area so I stayed After about 4 years my feet began to hurt near the Achilles tendon area Just walking was so incredibly painful I got orthotics and special custom made shoes but it didn t help much Anti inflammatories did not help and doctors wouldn t give me pain medicine for chronic pain Finally I had the bone in both heels sliced off and was told that should help It did for a while but then the pain came back with a vengeance in the right foot This time more bone was cut off the tendon was cut loose Bone which had formed on it was scraped and it was screwed back on with a Titanium screw Again I felt relief for a while But I had to quit whitewater kayaking It was just not cool to run a class 4 rapid and then be such a wimp that I couldn t carry my boat to the car Read more Medical Field Worker Perspective Ever Been Hit by a Wet Kipper by Lady Amelia Noble July 2006 I remember my 13 th birthday as if it was yesterday but it s not because of the cake presents or any of the normal stuff associated with this special day No I spent the day before my birthday the actual day and the following day in bed with what my grandmother said was wind It made no difference to her that I had consumed vast amounts of milk of magnesia Epsom salts and rennies None of these made my chest pain sweating inability to eat or walk dizziness go away It was still wind So there I was fifteen years old and never been kissed However when my grandmother found me unconscious one day on the hall floor from yet another episode of my profuse sweating and passing out I was immediately taken into the women s gyne ward as a suspected eptopic pregnancy Boy oh boy did they have red faces and shuffle their feet when I was found to be virginal intacto And this is when it all started the tests x rays bloods for everything you can imagine They prodded and poked and had long consulting conferences with my grandmother about what she thought was wrong with me None of this helped me Read more Ever Been Hit by a Wet Kipper Christine s Story by Christine April 2006 My life up until four years ago was wonderful I had a great job and a wonderful relationship Then it all came crashing down one summer day I was on my way to work when I started getting lower abdominal pain but at the time I didn t think much of it However over time the pain started traveling down my right leg so I went to see a neurologist and started getting nerve block injections I had at least 5 of the injections but they did not work Over the next year the pain slowly went away but I never found out why it had happened With the pain gone my life slowly got back to normal I got a new job got engaged and planned my wedding Then on a summer day my life that I loved so much came to a crashing downward spiral I started to have fainting episodes that occurred almost daily I saw doctor after doctor but they all told me it was psychological and I was just stressed about getting married So I went to a therapist who believed I was truly sick I didn t know who to believe and my health kept getting worse I started getting extreme fatigue blurred vision undiagnosed pain severe syncope nausea and many other symptoms I had a tilt table test EKG Brain scan Ct scan the works and still no diagnoses other than stress and low BP Read more Christine s Story Never Accept the Unacceptable by K M February 2006 I began fainting when I was 12 I m 24 now 50 of my life has been faint free 50 hasn t Quite an apt figure really is the glass half full or half empty I d be inclined to say half full though it doesn t always feel that way I fainted my way through my teens on account the Doctors said of heavy periods True enough I did faint more at the time of the month But I always felt something else was going on too Still at 16 things improved and I had 3 faint free years I moved away to St Andrews University and was having a ball One day in my second year I fainted in the street while out with friends This became a frequent occurrence I would feel the blood drain away from my face lose my vision and crash to the floor My GP sent me to a cardiologist who performed a tilt test It was horrific I thought I would die I felt so awful But they gave me an answer about the faints Vasovagal Syncope blood pressure and pulse that dropped too readily on standing I carried on fainting occasionally but it never stopped me from doing anything It wasn t malignant they said just annoying I dealt with it and carried on Then in 2004 I got a flu virus and began to faint on standing It got bad so I went home to rest for a while I hadn t even been on the train for an hour when I sparked out and the other passengers said I stopped breathing and had no pulse After I sent the paramedics away I managed to get home and the fainting worsened It was almost every time I stood In the end after the scepticism of various GPs I bought a blood pressure monitor to see for myself what was happening to me I was sure my heart was racing and I was proved

    Original URL path: http://www.dinet.org/index.php/community/member-stories?start=14 (2016-04-26)
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  • Member Stories
    hair had started falling out Unlike most college freshman I had actually lost weight The doctor told me I had a hormonal problem and on the way home I cried I had to stop to sit down because my legs felt heavy and I was lightheaded I wondered if I was crazy My roommate had started to call me a hypochondriac Was I Read more Not Alone Learning Patience and Resourcefulness My Slow Steady Recovery From POTS By Janis Bell October 2004 The following story discusses many alternative treatments The Dysautonomia Information Network is in no way endorsing or promoting these treatments Since 1994 I had mild orthostatic intolerance My primary diagnosis was chronic fatigue syndrome and I only failed the tilt table test after being given an injection Then in January 2000 I went to Arizona on a retreat and was advised by the MD there to undertake a one week fast of fruit and vegetable juices Although I felt great during the fast three days afterwards I began to develop a bad case of orthostatic intolerance POTS By the end of seven weeks I was depressed tired anxious irritable unable to think and unable to walk or work I tried to avoid sitting and standing as much as possible It was so bad that I had to hire a home health company to help me make dinner Other times I would sit in my desk chair and wheel around the kitchen I already had a strong yoga practice and had begun teaching at this time I discovered that although I could not even sit for meditation without getting dizzy and having my heart start pounding in my chest I could still do yoga The upside down poses like headstands and shoulder stands really helped me to regain a sense of balance as they brought blood to my head and reduced or eliminated my pounding heart I also spent more time relaxing then I ever had in my life Read more Learning Patience and Resourcefulness My Slow Steady Recovery From POTS My New Son By Melissa Zoepfl October 2004 This is a story about my son Mark Mark is 11 years old and very bright He started middle school this year and is in all honors classes and is taking 8th grade math as a 6th grader He is also on a travel soccer team A few years ago Mark s teachers suggested that he be evaluated for Attention Deficit Disorder that he wasn t always well focused or organized He was evaluated diagnosed and put on medication While he seemed a little better he was still a kid who day dreamed and needed a lot of reminding A year or so later a coach noticed that he was breathing hard when he ran and suggested he be evaluated for asthma He was evaluated diagnosed and put on medication He seemed a little better but he continued to be short of breath during activities The doctors continued to adjust

    Original URL path: http://www.dinet.org/index.php/community/member-stories?start=21 (2016-04-26)
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  • Member Stories
    an hour and then my husband came to get me and we went to my ob gyn Read more Katherine s story Emma s Story By Emma Nicholson from Ipswich in Suffolk December 2003 As a teenager at high school I experienced some dizzy and blackout spells The doctor said they were due to hormonal changes and left it at that Overall I was pretty well and the dizzy spells seemed to settle down I left high school at 16 years old healthy and happy I started training for my job which was working with drug addicted children in a crisis unit Things were going well until I fell ill one day at work with stomach pains I was rushed into hospital where I underwent an operation to remove a burst appendix Soon after that I was fighting an infection which left me in hospital for six weeks Once I was discharged from hospital I was feeling pretty well and had settled back at home with my parents Two weeks later I started experiencing extreme dizzy spells upon standing I was also passing out I was then taken back into hospital where the long journey to discover what was wrong with me began Read more Emma s Story Karen s Story By Karen Hope December 2002 I am an all American blond blue eyed 25 year old who for the most part enjoys a full active and wonderful life However I was diagnosed with dysautonomia last year in 2001 I had never heard of dysautonomia before this time I wanted to tell my story here because my experience with the condition seems so different than many of yours When I was a child I would occasionally lose consciousness often at grocery stores malls and during holiday time When I was about 10 I saw a neurologist and had an EEG to test if my brain waves were normal I suppose they were because the neurologist believed I was simply sensitive to stress Although she ended up being right she apparently missed other factors in the equation and I was never treated for anything The fainting spells which had occurred about once every year or two seemed to disappear for awhile in my early teens When I was 16 everything changed One night after a long and tiring day at an amusement park where I got sunburned and drank caffeinated soda all day long I started to feel faint at a friend s house It was 4 a m and I was overly tired I started feeling nervous that I wasn t feeling well and before I knew it I fainted and woke up on the floor with my friends surrounding me I was taken to the hospital where they released me chalking the incident up as me being dehydrated and tired which I had been No one probably ever thought to check my heart because I was young extremely athletic and have no family history of heart disease or any

    Original URL path: http://www.dinet.org/index.php/community/member-stories?start=28 (2016-04-26)
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  • Member Stories
    90s and low 100s most of the time and August is the hottest part of the summer High humidity makes it almost unbearable and we went through a ritual at the start of summer band practice every year explaining the need to stay hydrated not lock your knees when standing outside and take frequent breaks The freshmen every year absorbed this with wide eyed emotions that bordered fear but us old hands knew it generally wasn t a problem Growing up in this climate most of us get used to the heat Read more Janet s Story My Dysautonomic Destiny By Daniel Jacoby June 2002 I Pre Dysautonomia It was mid 1996 I d just celebrated my 36th birthday I had been in business for myself for almost 10 years and had a fantastic wife and daughter Things in my professional and personal life were as good as they could be My current company which had only opened for business 3 short years earlier was being bought by a public company and I would soon be able to take a few months off for a well deserved rest Little did I know what the next few years would hold for me About a month into my rest period I noticed a very small lump on the lower right side of my neck I walked into the Medical College of Virginia s Cancer Center on a Tuesday and asked if a surgeon was available to give me an opinion about the lump As my wife and I stood in the lobby the surgeon immediately identified the lump as thyroid cancer and asked when I would like to have it removed I jokingly said How about tomorrow to which he replied fine Before I could begin to worry about my newly diagnosed health status I was getting my pre op testing done stopping by the lawyers to make sure my will was in order and waking up at 4am Wednesday for my scheduled 6am surgery Everything went fine After a couple of weeks of recovery they scanned me for remnants of the cancer but found nothing This was a bonus as I would not have to go through any radiation therapy I had really dodged a bullet and had a fresh new perspective on life Read more My Dysautonomic Destiny Heart Story By Jolene August 2005 I have been grateful for the personal stories on the website and find I can recognize a little of myself in all of them I thought it was about time I provided mine I cannot pinpoint the exact time or day when things started to change in my life due to POTS I am 30 and married with 3 school aged children In 1998 I had dental treatment and was overdosed on diazepam with 2 ampoules through IV which was too much for my very slight body weight My breathing was compromised an ambulance was called and adrenaline administered I was admitted to a hospital overnight

    Original URL path: http://www.dinet.org/index.php/community/member-stories?start=35 (2016-04-26)
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