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  • It’s All in Your Head
    NOT have put me on it She also said that when combined with Tussin DM and other meds that I was on it could cause paralysis Five days after I stopped the amitriptyline I was able walk Then we went to Children s Mercy in KC They were not helpful at all and it was a complete waste of time Throughout the summer I had six urinary tract infections and was very sick This was believed to have been caused by the catheter which should never have been used for me I started to recover and was playing basketball again On Labor Day my brother came home from KU and gave me the swine flu Also on Labor Day I had a bad four wheeler accident Then on October 8 I was given Lexapro for migraines Three days later I could not walk I was immediately taken off the medicine I started having fainting spells and weakness I was also having stomach pains and nausea My new pediatrician suggested that I have a mid morning and afternoon snack to help with the migraines and fainting When I was on my period I fainted over thirty times at school My school kicked me out because they said I was a distraction I have been to five neurologists but finally I found the right one My new doctor spent seven hours with me and ran multiple tests He diagnosed me with a collagen disorder POTS migraines and vasovagal syncope He was amazing I am currently being tested for diabetes lupus and other diseases I am so glad that they finally figured out what I have Finally I can say that I do not have a mental problem Hopefully the school will be more lenient now that they know it s a medical problem and not psychological 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

    Original URL path: http://www.dinet.org/index.php/community/member-stories/87-it-s-all-in-your-head (2016-04-26)
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  • Coming or Going
    hips have trouble walking sitting standing and arthritis in the lower back which does not help walking sitting standing etc Sometimes I don t think my husband understands what is going on but he has seen one of the worst seizures He says that there is always something wrong with me I had to tell him that I did not ask for this or any of the other medical issues He believed me after the bad seizure occurred We were getting ready for bed I stood up and my hands felt numb I felt pins in my neck and then it went up both arms I thought I would lie down and put my legs up to get the blood back to my brain After a very short time I could no longer hold still and then the bathroom issue came along so he had to help me there During that time I just told him to call for an ambulance It all ended with a trip to the hospital They told me that all my capillaries had opened up I think what scares me so much is not knowing what kind of seizure will happen so that probably brings up the nerve thing maybe that s thinking to much I think life is a journey but I d like to get off this ride for sure I know that I must accept it and go on so that is what I try to do and not let it run my life however it still does PS There is probably more to add but my brain has stopped working for now Thank you for your support 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

    Original URL path: http://www.dinet.org/index.php/community/member-stories/86-coming-or-going (2016-04-26)
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  • Mystery Magdalene
    neurologist and a psychiatrist Each one told me that this was all anxiety and that they wanted me to take a medicine for anxiety Also they said that I was a female and trying to do too much with school and work I WAS SO ANGRY After the first 3 doctors I was so angry that by the 8 th I was enraged NO ONE WOULD LISTEN TO ME I knew that it wasn t anxiety and that there was something very wrong with me I take very good care of my mental health and always make sure that I am honest with myself because I have had problems in the past The doctors treated me like complete crap and told me that I was a woman at the age of 23 trying to finish school and that my body was just shutting down They said that I was too stressed and couldn t control my emotions so that was why I was in the position I was in At one point I passed out and was unable to talk and the doctor ordered the nurses to give me anxiety medicine so that I would stop having the episode I couldn t tell them that I didn t want it because I couldn t talk They knew that I didn t want to take it because I had refused it earlier It was unbelievable At this point my heart rate was at 120 beats per minute I could barely walk I had Parkinson like symptoms My breasts had filled with milk from the domperidone Every time I threw up I passed out and every time I ate I passed out After 7 days they told me that since my heart rate was better there was no reason for me to stay there and that they wanted to send me to a nursing home because I was unable to take care of myself My mom said no that she would take care of me I left the hospital and headed for Ann Arbor to recover for 2 weeks missing the last month of school and my new job as a graphic designer for FOX NEWS I was bummed By Jan 2009 I was somewhat able to walk and I returned to my job and last semester at school I also returned to my primary care doctor saying that I still had strange symptoms and had some new ones I had a hard time walking My legs were in constant pain I would get dizzy every now and then I didn t know when I had to urinate I would just feel pain and know I had to go I would get really hot and sweat for no reason After I ate my chest really hurt and I had palpitations as well as swollen hands and feet I couldn t walk up stairs had constant urinary tract infections constant yeast infections and my ears would get really hot She told me that it was only anxiety and that I should really take my medicine I have been an athlete all of my life participating in cross country in high school and rugby in college even on all star college teams There was no reason I shouldn t be able to walk Something was very wrong I have a family history of serious thyroid problems Six women in my family have thyroid problems I thought that maybe domperidone had triggered something and affected my thyroid I was also concerned about having diabetes because every time I ate sugar my body freaked out and I got really pale and disoriented She wouldn t refer me to any specialist She said that I would be a waste of their time and that they had to deal with patients who were dealing with actual problems So I found my own specialist The endocrinologist told me everything looked normal except that while I was in the hospital my parathyroid was low but was now fine Okay so that wasn t it I kept plugging away at different doctors Everyone was kind of telling me I was crazy because there was nothing wrong with me By Feb 2009 I went to see my gastroenterologist doctor for my monthly check up By this time my gastroparesis was not bothering me as much as everything else and the erythromycin I was taking for that was working I showed her this strange rash on my foot that would get brighter when I was hot It was strange because it was red with a white circle in the middle She saw me and said yes there has to be something wrong with you She thought I might have lupus So she said that she was going to send me to a rheumatologist I met with him and he couldn t believe that I had been turned away from so many doctors He said that there was something very wrong and we would find it That day he diagnosed me with fibromyalgia and Raynaud s phenomenon This obviously wasn t what was completely wrong with me but it was a start YES I WAS SO HAPPY THAT DAY THAT I COULD BARELY STAND IT I had blood work done and of course everything came back normal except my platelets were clumped but he said that it wasn t a big deal He set me up for a tilt table test He stated that it was strange because my body was acting like there was an autoimmune problem but all of my tests came back fine I went to get my tilt table test done at University of Michigan the day before we were supposed to leave The nurse there said that everything should be fine and that I probably would test negative since people rarely tested positive for this test I had a really bad feeling about it I told my mom and she said just to relax and that it would be

    Original URL path: http://www.dinet.org/index.php/community/member-stories/85-mystery-magdalene (2016-04-26)
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  • POTS Saved My Life
    racing After that I was sick all the time I eventually had to quit school work and my social life Every time I tried to do anything I would always get sick It felt like I was going to pass out and my heart would race I could not breathe but people would just tell me I was fine that I was being a hypochondriac I knew that I wasn t It would make me so frustrated Eventually I got scared to be home alone If I was awake and knew I was alone I would have a panic attack I was so scared that I was going to die It seemed like every time I went to the ER I would start feeling okay again Then my family doctor finally sent me to a neurologist He sent me in to get a CT scan and an EEG With the EEG they said my beta waves were high but did nothing I thank God for the lady who did my CT scan She actually had POTS After I told her all my symptoms she looked as if she was going to cry She told me that she had had it for eight years four of which she was undiagnosed She gave me her specialist s number and finally after 10 months of being sick I got in to see this doctor He ran some tests on me and told me that I had POTS I was happy to know that I had a diagnosis but I was scared about it I just started my medication today and I am going to see what happens I think this was a godsend God has helped me so much I realized what sad people I was hanging out with I realized that I was poisoning my body for a little attention I realized that I changed myself just to be accepted by shallow people I realized so much from this experience especially what an idiot I was My life probably would have turned out exactly like my mother s life I love my mother with all my heart but her life is not the best I thank God for helping me see things clearly and I know when I am ready or if it is a purpose in my life He will make me better I could not have been so strong without my boyfriend He is the love of my life He has been there for me more than anyone in my entire life He is my angel POTS saved my 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 of every bravelet goes

    Original URL path: http://www.dinet.org/index.php/community/member-stories/84-pots-saved-my-life (2016-04-26)
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  • Gail’s Journey
    started losing weight not entirely a bad thing just the wrong way to do it The stress was really getting to me The fatigue became overwhelming and Dr Barboi prescribed Provigil which is usually prescribed for people with narcolepsy It s helpful and I can t function if I miss a day of it The weakness lightheadedness and abdominal pain continued and I changed departments again this time to a great situation With the constant fear and stress engendered by the previous position gone I expected to feel better Not so Despite the release from the worst of the stress I still had abdominal pain nausea dizziness and exhaustion However I ve learned a few things over the last year in particular that have sustained my good attitude about life in general I ve discovered that I m one of the luckiest people with dysautonomia in the world because I have Dr Barboi in my corner I m an employee where he is employed so I have the distinct advantage of direct communication and easier access to my physician than most people I have a husband who is patient with my roller coaster life even though it often frustrates him and he can t really empathize I have a manager who is kind and understanding when I have a bad day and I work for a physician and a nurse practitioner who are trying to learn more about dysautonomia just so they better understand what I m going through I am able to work play and do yard work like most people with more physical repercussions but I can at least DO the things that are difficult for many with this condition My kids see a mom who cooks and cleans who takes them to the beach and out for frozen custard afterward who throws the baseball around at the park and who rides bikes with them sometimes There are days when it s so hard to roll out of bed get ready for work make it through the day without making a major error that could affect a patient s health and go home to face making dinner helping with homework walking the dog etc But I can do those things so I make myself do them because I m afraid that if don t I would be doing less than I should be I sometimes push myself too hard to be too perfect and to be too healthy Sometimes it s okay to just sit down and be sick to huddle under a pile of blankets because I can t get warm or to cry or lash out at the limitations my body dishes out on a seemingly random basis Dysautonomia is different for everyone I feel so bad for the people who can barely get out of bed or the recliner most days I don t have that limitation often But I still understand the pain the frustration the weakness and the fog that envelopes us all

    Original URL path: http://www.dinet.org/index.php/community/member-stories/83-gail-s-journey (2016-04-26)
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  • Pure Autonomic Failure: My Story so Far
    pressure really sinks after meals and alcohol It is also very low in the mornings and I don t even bother with breakfast as I d feel so lousy that this would effectively stop me from getting anything done I try to eat a little and often but it is not easy to do that and care for my family I have also noticed that heat is really beginning to bother me and I spend holidays either in the shade or submerged to keep cool Exercise is also particularly difficult I just about manage to swim 20 lengths but any other form of exercise is really tricky as I have to stop for a breather or to put my head between my legs every few minutes At least with swimming I am horizontal so the blood doesn t pool in my ankles Last week I was sent back to London for more tests with Prof Mathias who is now suggesting I try taking a drug called octreotide before meals He feels this could greatly enhance my quality of life as it reduces the effects of eating on my blood pressure The downside is it has to be injected subcutaneously 3 times a day I haven t gone on it yet and to be honest I am very nervous about the self injections I can see that I will have to get over these fears especially if it means my life could be less restricted I wondered if anyone reading this has any experience with this particular drug I would be most interested to hear how you got on with it I also wondered if anyone who has similar symptoms to mine has any self help tips Personally I have noticed that if I steer clear of carbohydrates my symptoms are slightly lessened I also try to drink lots of water tea coffee etc to try to keep my blood pressure up Another point I thought I d bring up is about pregnancy I definitely noticed this coincided with the onset of my symptoms I noticed that another contributor had also mentioned this When I mentioned it to the scientists conducting the tests for the Prof at St Mary s they were interested in this Has anyone else associated the two things I wondered if my worsening symptoms might in some way be tied in with the menopause Mind you this association would not work for male sufferers This is a much longer letter than I originally intended to write and I hope I haven t bored you all too much It is comforting to know that there are others like me out there and maybe we can help each other by sharing tips 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

    Original URL path: http://www.dinet.org/index.php/community/member-stories/82-pure-autonomic-failure-my-story-so-far (2016-04-26)
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  • One Day at a Time
    still to this day advocate for him We my husband and I could deal with anything that life threw at us We were a great team In March of 2000 out of the blue my husband had a seizure That night he was diagnosed with a brain tumor Boy talk about life changing We went to Boston for surgery They removed 98 of the tumor It left him temporarily paralyzed on his right side We brought him back to Burlington for a month in rehab During this time I was diagnosed with hypothyroidism My husband passed away in July of 2000 In October of 2000 I moved the family back to Rochester to be near family friends and my husband whom I had buried there My health was the same I had near fainting constipation bladder infections exhaustion but life goes on I met Andy in late 2001 Our relationship grew and he moved in with the kids and me In February of 2005 I had the worst headache of my life I went to the emergency room and had a CT scan and spinal tap Both tests were normal Thank God I had no tumor that s all I could think Well the headache still hasn t gone away For the past 2 1 2 years I ve been to all types of doctors First they told me it was stress then a possible spinal fluid leak I was sent to a neuro ophthalmologist at the University of Rochester She put me in the hospital to try to break the cycle of headaches It didn t work But they did notice that I was having problems with my blood pressure It was very low especially in the am I was referred to a cardiologist for further testing They did testing in the office which showed that I had orthostatic hypotension After that I had a tilt table test Well I failed that big time As I did research online I started to get the idea that all of the health problems I d been dealing with might have a collective name I continued to tell the doctors that I had trouble standing for any period of time numbness and tingling in my head along with the pain When I walked to the fridge I d be out of breath and sweating like a pig I also had many other symptoms This headache was ruining my life My husband was doing research for me and found POTS I laughed at him but as time went on and I did more research WOW it answered so many questions It helped me see why I always felt like I was lazy and why some days I couldn t even get out of my chair I m not insane We talked to my doctor who agreed that it was POTS and referred me to an autonomic specialist Now the problem is that this specialist has old broken equipment and is waiting for parts

    Original URL path: http://www.dinet.org/index.php/community/member-stories/81-one-day-at-a-time (2016-04-26)
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  • Candace’s Story
    going great my symptoms stayed the same and I learned to live with them After a month and a half I started to develop new symptoms I started to have chest pain severe nausea dizziness and weakness After a Saturday cookout I was feeling unusually sick and decided to go see the camp medical officer who was an experienced paramedic He knew of my medical history and of my symptoms He decided to check my blood pressure and found that it was extremely high I was then taken to the local hospital ER where they did some tests and again everything came back normal I was sent back to camp with no answers Over the next three days I grew increasingly worse I was barely able to walk could hardly eat and started to have blurry vision with my high blood pressure I also developed jaundice On Wednesday the camp medical officer sent me to the hospital where he worked From there the hospital s medical director sent me to DeVos Children s Hospital where I was hospitalized for 8 days This was a very scary time for me The doctors thought that maybe I had a brain tumor and ran tests to look for one I had many more tests done all with no answers After I was discharged from the hospital I was sent back to see my family doctor who in turn sent me to see a cardiologist for my high blood pressure The cardiologist put me on a beta blocker which helped with my fast heart rate and high blood pressure He continued to look for the underlying cause but found nothing In November 2006 during my senior year in high school he referred me to a pediatric nephrologist at the Mayo Clinic in Rochester Minnesota On November 19 th my mom my grandma and I set out from our home in northern Michigan to make the long drive to Rochester Minnesota in hopes of finding some answers I was excited that I might finally get some answers but after so many tests and doctor visits with no solutions I was very doubtful At the end of my first week at Mayo I was diagnosed with autonomic dysfunction and POTS I was also diagnosed with Gilbert s disease which explained the jaundice The doctors told me that in fact I wasn t crazy and that it wasn t all in my head I can t explain how relieved I was It was hard realizing that they couldn t cure me but just knowing that I did have a known medical condition and that it was treatable was a huge weight lifted off my shoulders One huge blessing for me was that during the summer when I was hospitalized I had been planning to go on a mission trip to El Salvador with a group of staff members from the camp Once I found out that I was going to Mayo I was concerned that my appointments

    Original URL path: http://www.dinet.org/index.php/community/member-stories/80-candace-s-story (2016-04-26)
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