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  • Karen's Story
    I have another EEG He found the EEG to be perfectly normal and recommended I see a cardiologist he told me it was fairly common for people to be misdiagnosed with epilepsy who really have a heart condition I saw a cardiologist here who ordered up tons of tests including a tilt test a 48 hour heart monitor an echocardiogram and other tests that I can hardly remember I know one tested the rate with which my blood circulated throughout my body which ended up 3x the normal rate and another was a stress test in which they injected medication to purposefully increase my heart rate After about 10 minutes in an upright position on the tilt table I began to pass out but they stopped the test just before I did thankfully I can stand up for hours and be fine but I was extremely nervous and tense during this test which I m certain was the indirect cause of my near fainting episode My echocardiogram thankfully ruled out malformations or disease and the holtor monitor showed a fairly normal heart rate I am now taking a beta blocker as well as a medicine typically used for digestive disorders hyoscyamine I run nearly 4 miles a day and lead a very active and healthy lifestyle which I am so blessed for Other than my mother recently being diagnosed with mitral valve prolapse she is 60 years old and symptom free no one in my extended family has had any heart related conditions I believe however that my condition of dysautonomia is directly linked to the way my body reacts to stress I cannot emphasize this enough Intensely stressful situations are the only factor that have been present during every fainting episode I exercise regularly eat a low fat diet stay away from caffeine except chocolate and try to keep stress at bay to help improve my quality of life with dysautonomia I admit that I often enjoy a glass of wine when I feel tense or very stressed because it tends to slow my heart rate when it is getting too high I count my blessings everyday that I have not had an episode since December of 1998 I know everyone s body reacts differently to dysautonomia I am curious if any of you lose consciousness under particularly stressful situations and if you feel horribly nauseous after a fainting episode as I do You could reach me at khanson27 hotmail com I wish you all the best and thank you so much for having read 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

    Original URL path: http://www.dinet.org/index.php/community/member-stories/57-karen-s-story (2016-04-26)
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  • Cindy's Story: A Cross Country Adventure
    figured out that my kidneys had shut down The doctor said that my heart had started beating so fast because it wasn t getting enough blood The blood was pooling in the veins in my legs and not enough was getting back to my heart So in order for the heart to get its needed blood it started shutting down other organs like my kidneys I m glad it did that though instead of going into cardiac arrest or something I saw a kidney doctor on a regular basis for awhile Then I went to a cardiologist and he found nothing so I went to a neurologist It took months for them to finally figure out what was wrong with me I went through a lot of tests gave a lot of blood etc and finally they diagnosed me with POTS I was given a beta blocker Nadolol which I still take two years later They also have me taking 8 grams of salt a day which I do not like at all I am back running competitively again and that impresses my doctor He says that because I m so young I have responded well and it s not affecting me too much I still get dizzy though and I still have a fear of just dying when I run I try not to let that stop me I just run through it but every time I feel my heart start to race I get scared My illness has made me want to go into medicine I have applied to colleges as pre med and next week I have 3 interviews at a medical school that accepts college freshmen into an accelerated program and guarantees them a seat in the medical school I am very excited I guess getting diagnosed with POTS has had its pluses too 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

    Original URL path: http://www.dinet.org/index.php/community/member-stories/56-cindy-s-story-a-cross-country-adventure (2016-04-26)
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  • Lori's Story
    life I did extensive research on the diseases and I found an excellent doctor I became an aggressive patient that never went to the doctors without a list of questions I began walking very slowly on the treadmill everyday and just built up my stamina In the meantime I was going through what we all go through testing out different meds having very bad days and having very scary new symptoms I did not skip a day of walking though Exercise made me feel better and gave me a goal so I began to do yoga Yoga made me very focused and balanced and though I trembled through every move it made me very strong I began to read books on nutrition and how important it is to our condition I cut down on sugar and I ate smaller portions of food So at this point I began to get in very good shape even though I was fighting this disease When they finally took me off the steroids my Sarcoidosis was in remission and I lost the rest of the water retention that I had My medicinal regiment was now only for POTS Inderal LA to help the severe Tachycardia Adderal XR to boost the ever low blood pressure and Wellbutrin SR still not sure why I take that exactly but Dr Grubb explained it does something with the chemicals in my brain and it works OK so now for some good news A year after I got sick I started back at my job This took my mind off of my illness and made me feel stronger I had a very accommodating job that let me work a few days a week I went back in August 2003 and at that point each month I was improving drastically I know my symptoms I ve learned how to control them and I don t fight them If I am having a very bad day so be it At this point something great happened to me I was doing things that I normally wouldn t do because hey I could again So I went to this acting audition in Boston I was chosen to fly out to Hollywood and compete in an international competition Well I ended up winning Best New Actress of the Year runner up the month before my boyfriend proposed to me so I was pretty happy I was approached in Hollywood by some agents to move out to LA Well I did it Obviously it was a tough decision I went through many doctors appointments to convince myself that I could do it and I flew home every three months for check ups CT scans EKGs you name it I pay through the roof prices for a good PPO plan to keep my doctors but it s worth it Anyways two months after I moved my agent called me and told me to go on an audition for the CBS reality show Big Brother Long story

    Original URL path: http://www.dinet.org/index.php/community/member-stories/55-lori-s-story (2016-04-26)
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  • Bridgette's Story
    drive to work The brain fog and tunnel vision started 5 minutes after I arrived at work getting worse throughout the day In my position I couldn t afford to have brain fog I had to be ready to respond to high risk deliveries This could be anything from a micro premie 23 weeks gestation to a term baby in major distress I was in charge of their breathing or lack thereof I had to put the breathing tube in run the Ventilator give meds etc No room for any errors I was at work and had a really bad attack and ended up in the Emergency Deptartment I later had another episode where I passed out and fell down my stairs I saw my EP again He thought proamatine would help My heart rate went down into the mid to high 30 s after the first dose of proamatine It stayed at 37 50 beats per minute for 4 5 days I was not able to move off of my couch except to go to the bathroom I had to crawl at some points to do that My 13 year old son had to do more that week than a young teenager should ever have to do for their mother and siblings My husband is a fireman working 24 hours on and 48 hours off and was getting mandated for 12 hours overtime after every shift My son cooked dressed the little ones cleaned mowed you name it I am not sure what I would have done without him I was told to stop taking the proamatine My HR increased to the mid 50 s and my EP had me start on the proamatine once again My HR again went to the 30 s and 40 s How scary especially since my pharmacist had informed me that the two worse side effects of proamatine were reflex bradycardia and sudden death My doctor went back and forth over the next month with the proamatine lowered the corgard and increased the florinef I took myself off the paxil which I had been on for about a year and 1 2 by then I had not felt any better on it actually much more fatigued Sometime in all this I was told I was hypermobile and that I had Femoral Patellar Syndrome I went to the National Dysautonomia Research Foundation 2002 Patient Conference I talked to a doctor Dr Grubb at the conference who said it didn t sound like the proamatine was working and that I should go off of it I also met a lady who told me about Ehlers Danlos Syndrome She has it and she saw some similarities in me Little did I know she was right I was later diagnosed with it My heart rate slowly returned to the 60 s 80 s after stopping the proamatine I still had periods where it would go as high as the 130 s then as low as the 30

    Original URL path: http://www.dinet.org/index.php/community/member-stories/54-bridgette-s-story (2016-04-26)
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  • Jennifer's Story
    like my heart had stopped My rate went from 160 to 52 in two seconds I will never do that again I was prescribed the usual fluids 2 liters to a gallon a day and extra salt compression stockings and pindolol I was already on Xanax for GABA inhibition though I never took it three times a day I can t take it and work it is a legal issue The pindolol helped my heart rate but did nothing for my palpitations Instead it made them worse I was still worried because even with meds my heart rate still ran 120 I was concerned about developing cardiomyopathy This concern was pushed aside by every one of my doctors I asked One night about three months later one of the electrophysiologists was on the floor to see a patient He was kind enough to talk to me for over an hour about my POTS He told me yes I was right running a high heart rate for an extended length of time can cause cardiomyopathy but if I kept my heart rate under 120 I should be okay He also suggested I switch to lopressor instead of pindolol to get rid of my palpitations He told me most women do well with pregnancy and that the hormones and fluid retention alleviate the symptoms They can take their meds if needed but a pediatrician should attend the birth All the worries no one would talk with me about he addressed That was over two years ago I find my symptoms harder to control and will probably have to go back and readjust my medications I still suffer from chronic fatigue even with medicines The only thing anyone can tell me about that is to rest when I am off work Taking care of myself and listening to my body is the best medicine for me There is no cure I have always had a high ability to function From my talk with the EP that night at work I am a classic case of someone who has always had the problem I just wasn t symptomatic I don t know why all of a sudden I noticed what had been happening to me for years I just did At least now I know why I am tired why I have headaches why I get tremors why I have near syncope and why my heart pounds Living with this disorder is a challenge Most people including the medical community don t know about it or don t know what to think about it It is a life altering condition and only personal stubbornness keeps me going at times I don t want to let this condition rule my life I want to rule it though at times it does feel like a losing battle 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

    Original URL path: http://www.dinet.org/index.php/community/member-stories/53-jennifer-s-story (2016-04-26)
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  • Janet's Story
    rest after a faint At some point I stopped passing out I thought the problem had gone away and so did my mother But when I got pregnant at the age of 17 I began experiencing symptoms again It was then that I finally noticed that my heart rate was extraordinarily high One day in a class I took my pulse when I was feeling dizzy and sitting in the chair my pulse was over 120 I knew something wasn t right Armed with this new information I visited a cardiologist More tests followed an EKG an ECG and a Holter monitor that would record events The cardiologists found nothing wrong but did note the pulse was too fast They told me I was just emotional due to the pregnancy and that I should try yoga to calm myself down After getting no validation from those doctors I decided so many doctors couldn t be wrong and just lived with it I stayed as cool as possible and stayed off my feet or walked around when I felt bad After the birth of my daughter it went away again and stayed gone for two years However a nasty divorce and drastic lifestyle change prompted a resumption of symptoms and I was flush with dizziness light headedness and tachycardia I noticed my collarbones would hurt when I got hot or drank alcohol on an empty stomach Nobody I talked to had ever experienced this I also discovered that my symptoms were at their worst when I was standing still One afternoon I was standing in line at the post office Accustomed to taking my pulse frequently and sitting down when I felt bad I no longer worried about falling and hurting myself But that afternoon in the post office I recorded my first heart rate over 160 The swarms of crows were back and I woke up on the floor with concerned faces staring back at me I went to the emergency room immediately The emergency nurse took my pulse while I was laying on the examining table Naturally it was a normal 70 beats per minute She screwed up her face in confusion and I told her it only happened when I stood up She apparently did not believe me and all I got for my time was a half hearted order from the physician to see a cardiologist Having been down that road I was reluctant but followed his instructions I began to have migraines at this point but did not connect them to the tachycardia The cardiologist set me up with yet another Holter monitor and when the results came back normal but fast he told me I was just too stressed and needed to see a psychiatrist and get on a mood stabilizer Frustrated and certain he was wrong I ignored his suggestion and left I developed my own methods of dealing with POTS I stopped going anywhere that I might have to stand in line or get too hot When I felt bad people would notice In answer to their concern I told them I just have this weird heart thing nobody can figure out I m ok It s no big deal But inside I yearned for some kind of answer I had spells on and off for the next several years most of which were largely ignored I stopped paying attention to it and sitting down when I was dizzy became an unconscious reaction Then I got a job that had excellent insurance At first I didn t have any symptoms and so did not pursue answers One day I was outside smoking a cigarette with my best friend a guy who has an insatiable need for answers The two of us discussed my problem repeatedly and he urged me to seek help again He worried that I would pass out when I was alone again and hurt myself At his insistence I visited a cardiologist again This time I was armed with more information I knew what situations provoked my symptoms and I had typical heart rate information ready He examined me for five minutes and promptly said I know what s wrong with you The relief I felt was unimaginable Someone actually acknowledged I wasn t crazy Someone knows He said You have inappropriate sinus tachycardia Short of surgery which doesn t always work there s nothing we can do You just have to live with it Relieved but frustrated I turned to the Internet for answers Now that I had a name for this weird heart thing I could find out if he was right about treatment He was unfortunately I found many stories from other people who had found no relief from their symptoms The good news was that it was not fatal At some point my symptoms went away again and I lived a relatively normal life Last October all that changed My father in law who I was close to informed us the weekend after Labor Day that he had lung cancer and was undergoing chemotherapy Two weeks later he began coughing up blood and was transported to MD Anderson where he collapsed My husband and I immediately drove to MD Anderson which is two hours away His father never regained consciousness but for a week we rode the interminable ride of the Cancer Center s ICU Good news would come then bad news and our emotions cycled wildly waiting for answers Finally he declined and passed away My husband and I helped his stepmother make funeral arrangements and get her back home and settled in their home The stress of that event brought on this latest episode The symptoms seemed to be getting worse my heart would race faster and I discovered new situations that would bring the tachycardia to a fever pitch Frustrated again I turned back to the Internet Surely there was new information And I found it In an article on About com the

    Original URL path: http://www.dinet.org/index.php/community/member-stories/52-janet-s-story (2016-04-26)
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  • My Dysautonomic Destiny
    in bed through four sleepless nights before mustering enough strength to drive the 3 hours it would take to get home Within 24 hours of arriving home I found myself at the local ER close to syncope at 3am They diagnosed me with the flu gave me some potassium tablets and sent me home I saw my PCP who also made the same diagnosis Knowing there was something more serious going on I went to other doctors until I found one who actually did a poor man s tilt table test which showed my elevated heart rate from the lying down sitting and standing positions This was a major breakthrough as I was soon able to investigate the world of Orthostatic Intolerance via the Internet and begin to find others that had very similar stories and symptoms to which to relate I was also admitted to the hospital for EKGs an Echocardiogram and a Tilt Table test IV The Darkest Days Even though I had been diagnosed relatively early on my worst days lay ahead No one in my hometown knew much about treating the symptoms of my syndrome I became so bedridden over the coming months that I couldn t even lift my head off the pillow or move my arms without triggering my tachycardia I also began to slowly lose my appetite and lost 50 pounds during a 3 month period From late February through June I was completely debilitated With an upcoming appointment to the POTS Promised Land of Toledo Ohio to see the famed Dr Blair Grubb I had a feeding tube installed so that I could regain some of my weight and get nutrients for the trip Dr Grubb was very thorough and I left knowing even more about what was happening to me than ever My family life and business life were still on a downturn for obvious reasons and money was becoming an added worry for our family V Some Improvement Continuing with the feeding tube I slowly began to regain some of my strength and began slow physical therapy in August 2001 By the end of the year I was able to slowly move around the house and work for short periods I still could not ingest food orally and continued to have throat spasms that made me feel like I was choking Before I knew it I was taking 10mg of Ativan every day to help relax my throat muscles While I was no longer bedridden I still found myself mostly house ridden I also started learning more about Cervical Stenosis and how some patients with Dysautonomia found improvement through surgery by having pressure on the cervical spine relieved I was feeling optimistic about the future and the local newspaper even did a story on my situation http Eye Q com news asp which probably became the first ever use of the words autonomic nervous system in any paper s business section In April of 2002 I followed the stories of

    Original URL path: http://www.dinet.org/index.php/community/member-stories/51-my-dysautonomic-destiny (2016-04-26)
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  • Heart Story
    more light headed and dizzy even when just sitting I feel a see saw effect which is very scary I am not moving bodily but my head is My blood pressure is low even on Florinef We recently took a plane trip as a family and I NEVER drink but I felt so bad that I cried and asked for a double whiskey Thinking back on this it was POTS I never considered it then The downwards pressure was tremendous and I really felt like I was going to pass out It was to the point on take off that I could NOT lift my head up from my chest I also feel nausea most days and will wake up and dry retch at least once weekly I cannot eat mince cheese or anything fatty spicy or otherwise after a couple of hours of stomach cramps pain I am physically sick I have lost my appetite over the past six months and don t want to eat but I do it out of necessity This is sad as I used to have such a healthy appetite and I could eat my husband under the table at buffets Lately I have had tremendous pain in my legs this is a new symptom for me from hips down It is very bad at night I am petrified of developing CFS as I know this can come on due to POTS I simply do not have the time to be unwell It scares me The house can be nice and tidy one day and a mess the next What do I do I am angry and frustrated I feel old before my time These are meant to be my best days I remember when I was younger and the kids were little my house was perfect Not an item of clothing was to be seen not a dish not a toy everything had its place and I was the model mom I sometimes wonder if I contributed to my POTS due to my super mom mentality You have to wonder I do not like taking medication of any sort but lately I feel willing to try anything I feel my condition has certainly worsened since my diagnosis and have an appointment this coming week with my cardiologist as I am feeling so bad Today is an off day and what prompted me to write this is that I am so damned TIRED I want my life BACK I feel for all of you and the hundreds of others out there who have yet to be diagnosed with POTS and who are possibly like I was wondering what the hell was wrong with them Strength to all xxx Jolene 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

    Original URL path: http://www.dinet.org/index.php/community/member-stories/50-heart-story (2016-04-26)
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