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  • My Life After Gastric Bypass...
    life was great There was no more hand to mouth existence on SSDI I had satellite TV and was working my butt off literally So as a new person I did some things I had not dreamed I would ever do again Now I could go to the fair and ride on rides like I did in my youth This time I did it with my children I felt great at least for a while The first ride was not too bad the second and last rides did me in When I got off of one ride that flips you around head over heels I felt sick I thought this was natural I told myself that what I was feeling was totally normal It wasn t I had the effects for about five hours after the ride By mid September I was in an inpatient psyche ward at my local hospital for anxiety and suicidal thoughts It was during that first ER visit and subsequent inpatient stay that doctors started to notice rapid BP and HR changes when I stood up I was discharged and thought the worst was over Boy was I wrong It was just the beginning of my troubles I went back to the ER about one week later for chest pressure pain and head rushes It felt like blood was just pulsing through my head I was really in bad shape My PCP told me that they might have to put in a pacemaker because my HR was so low It had gotten down to 32 beats per minute I was throwing PVCs all over and at one point they thought I had heart block too The decision was made to implant the pacemaker and fix the pump The arterial lead moved after the first surgery so I had to go back for a second surgery to fix it After about three days in the ICU they were going to send me home but they were still concerned about the massive BP drops I had when I stood up I believe my blood pressure got down into the 70 30 range at one point so they gave me fluids to see if that would help They gave me 1000 cc of saline and had me stand up That was a big mistake My face as I was told went white as a sheet I went to another hospital to see if they could figure out what was wrong with me The hospital I went to was the same one that had performed the gastric bypass St Francis I stayed there about three days and had many tests done Their conclusion I was starving to death due to the gastric bypass Of course since they were doctors they called it nutritional deficiency They ordered me to see their in house dietitian and work up a meal plan that included 100 grams of protein per day I was out of the hospital in less than a week Dizziness lightheadedness chest pressure pain and wild BP changes sent me back to the ER again I was really stumping the local doctors It would almost have been funny if I had not been so sick During my second day in the ICU I had a non sustained VT run of about 37 beats The VT triggered another trip to St Francis for a heart catheterization to check for blockages No blockages were found However this time I had a different cardiologist than I had on my first trip Aside from the doctor who said I was starving to death a whole team was on my case for awhile I was starving but the starvation was only part of the problem My new cardiologist was really on the ball and pieced together what he thought was wrong with me He ordered a HUT H ead U p T ilt test for me This was one test for which I did not want to have a positive result Of course I did It is positive for POTS my doctor said My next question was one that many have asked What is POTS For the next half an hour I found out that this little acronym would consume my life for the next few months October 20 2006 was a day that changed my life From the day this all started I have seen approximately 15 doctors in two different states The reason for that is quite simple insurance companies can be a great help but can really hamper care if you have to be in network for coverage Don t get me wrong I am extremely grateful to have insurance It just hurts that you have to fight to get covered when you should not have to At this moment I am awaiting a report from my team of neurologists from University of Massachusetts Hospital in Worcester MA They are trying to determine if there are any other tests that need to be run or therapies to try I was on two different drugs that did some good but had side effects that were not good for me at all I also tried the compression stockings too Let me tell you as a man putting on pantyhose is pretty weird to say the least I tell my friends that I am one of the few men you will ever meet who has worn a feminine napkin as a wound dressing for groin lymph node removal in 2000 and pantyhose I am getting stronger However I can echo the words of the founder of DINET Michelle Sawicki I am not the same as I used to be Not by a long shot I have no real stamina I still get lightheaded I get symptoms such as dizziness chest pain BP changes tachycardia bradycardia neuropathy in my hands and feet blood pooling my hands are freezing typing this headaches not as bad now sleep problems and other symptoms too And that is on a

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  • Living with a Nightmare, POTS
    certain homes eye allergies and chronic sinus infections In 2004 I lost weight maybe ten pounds at first and experienced persistent vomiting I started to lose weight very rapidly I went from a size 14 to a size 8 In 2004 I got a new doctor due to insurance changes It was a blessing in disguise I was diagnosed with fibromyalgia I was given an MRI that found degenerative disc disease I also began losing my balance and falling but it was not happening very often I just thought I had tripped over something In 2005 I got married My new husband took me to Baton Rouge Louisiana to meet his mother Unfortunately during the trip I developed food poisoning after eating at a restaurant I felt nauseated for almost two days had some loose stool lost control of my bowels one time felt very weak fatigued and had trouble walking along with balance When we returned from Louisiana I knew something was wrong with me I could barely walk I kept falling down I had pain everywhere and extreme weakness all over my body One night I came home from work and I fell down three times My husband took me to the hospital and I was admitted After I was released I was falling down five or six times per day I needed assistance walking and needed to use a wheelchair A few days later my doctor diagnosed me with POTS He sent me to a cardiologist Dr Blair Grubb to confirm the diagnosis Dr Grubb said that I was suffering from muscle wasting orthostatic hypotension and dysfunction of the autonomic nervous system I had a positive tilt table test He believed my case of POTS was due to another underlying medical condition because POTS is extremely rare in African Americans He thought that I had a metabolic disorder called mitochondrial cytopathy but I tested negative at the Cleveland Clinic I was seen by several specialists at Cleveland Clinic I have been diagnosed with IBS migraines sleep apnea asthma and allergies I also have peripheral neuropathy My face hands and feet feel as if they are burning and throbbing I get temporary paralysis I also get stabbing shooting and aching pain This is very debilitating I have trouble walking climbing stairs or lifting anything more than 5 pounds I also feel disconnected from my family and friends because I feel like a prisoner in my own body I also had to have a hysterectomy because I had two fibroids as big as grapefruits and one large cyst I was in constant pain for months until a Cleveland Clinic OB GYN took away the misery and pain I did end up in intensive care after my surgery because I went into respiratory distress I had asthma and did not know it at the time My husband and I divorced a year ago He was never supportive of my illness He was also angry all the time as well as

    Original URL path: http://www.dinet.org/index.php/community/member-stories/78-living-with-a-nightmare-pots (2016-04-26)
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  • My Life As I Know It Now
    far I can get without these doctors and all I want is to be able to function again in some capacity I feel like so much of my time is spent waiting for test results or for the next appointment Many doctors seem to be so wrapped up in their research or another aspect of their job that they seem to have forgotten why they went into medicine in the first place In a perfect world doctors would work together and the patients would be the most important thing but in many instances that is not the case Doctors seem to want simple cases and do not want to spend the extra time investigating mysterious cases They just pass those off to somebody else A good doctor is aware of their strengths and weaknesses they may not always have answers or solutions but should try to use the resources at their disposal to get them Doctors have the power to change things They have the ability to accomplish so much Before all of this dysautonomia was never a word in my vocabulary but it is a word I now use regularly Dysautonomia literally means dysregulation of the autonomic nervous system The autonomic nervous system is the master regulator of organ function throughout the body It is involved in the control of heart rate blood pressure temperature respiration digestion and other vital functions Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates For this reason dysautonomia patients often present with numerous seemingly unrelated maladies www potsplace com The latest condition I have learned about is mitochondrial disease The abnormal muscle biopsy I had indicates that I could have this condition which can vary in type and severity This is a group of neuromuscular diseases that are usually genetic and most often affect children There is no cure for mitochondrial disease At first I thought it was a definitive diagnosis and I was prepared to move forward with this I have now learned that although I have a mitochondrial dysfunction which will never go away this may not be my definitive answer Even if I do have one of these neuromuscular diseases the doctors have absolutely no idea which one and there would be nothing they could do for me anyway I feel as if I have an invisible illness at times When people see me I often don t look sick but people don t know what is going on inside of me I have so many pieces of different diseases and it would be bizarre if they weren t all connected somehow I never thought with today s medical technology that it would take so long for me to be diagnosed and treated I m still hoping that day will come soon People don t understand what it is like for me to live day by day I even forget what it is like to feel healthy I haven t felt right since Thanksgiving Day 2004 when this all suddenly began When I woke up that day I felt fine but I became sick later that morning I thought it was just the flu but then it never went away Among all the other symptoms I experience the dizziness and nausea are by far the worst I am dizzy and nauseous to some extent every minute of every day There are times when these symptoms are better than others but my symptoms are unpredictable which is one of the most frustrating issues I never know when I m going to faint or when I ll have to use that plastic bag that I always have with me in case I need to vomit My other symptoms like abdominal pain and headaches are a nuisance but they are not the ones that keep me from functioning I experience numbness tingling and some loss of feeling of certain body parts I also cope with painful burning sensations in my hands and feet as well as poor hearing at times I m sensitive to light and always feel dehydrated I deal with tachycardia and can t even shower without feeling faint or the fear of burning myself because my temperature perception is disrupted The worst problem by far is the unpredictability If my symptoms weren t so unpredictable I could possibly hold down a job but even when I am able to accomplish things I can never do anything for too long before my symptoms become unbearable My life may never be the way it was as I knew it I can handle that but there has to be something out there that will get me functioning again I want to resume my life even if it s not the way I was living before this illness I just want to resume some sense of normalcy There were so many things I took for granted People often do not understand how my body cannot do the things most people s bodies do subconsciously Then again I also do not understand how one day my body suddenly decided to stop compensating for gravity after I had happily lived with it for so many years At times I feel helpless I ve always been an independent person and now I find myself relying on others for basic tasks I cannot drive I m constantly dizzy and getting sick I have trouble reading filling out forms at doctors offices and even emailing takes a lot out of me Sometimes walking is hard but there are other moments when I cannot even stand without fainting It s hard to sit back and wait like doctors recommend often giving me no choice in the matter I constantly find myself despite the advice of my doctors pushing to do more even though it makes me sicker I m sure that they couldn t just sit still and wait on others to determine their quality of life You learn a lot about yourself

    Original URL path: http://www.dinet.org/index.php/community/member-stories/77-my-life-as-i-know-it-now (2016-04-26)
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  • Karyn's story
    36 hours or an entire weekend at a time My pager would go off in the middle of the night and I used to pray that I would not have to drive into the hospital My partners really did not care WHY I could not take call They just wanted to get rid of me A lawyer told me that I could have filed a discrimination suit against them but I did not want to waste my energy I found another job as a neurologist and now work part time without call The hardest thing for me has been learning that I cannot cure myself by willing it with my mind Before this illness I thought I could do anything with hard work and determination I can help the illness with positive attitude but I cannot get rid of the illness I also find it hard to limit myself I have overextended myself on many occasions usually around holidays and paid the price I look around at other kids and see parents who are involved in a lot of their activities My husband has type I diabetes so it is hard for both of us to be active When my daughter was younger I told her I was sick one day She said Mommy you are NOT sick You are not coughing or sneezing She understands better now at age 9 Similarly adults look at me and have no idea that I could have a health problem because I look young and healthy I am 40 years old but have been told that I look like I am in my 20 s When I use a handicapped spot or a scooter at stores people stare at me trying to figure out what is wrong with me or whether I am abusing these aides I have learned some life lessons as a result of the illness I like to think that good things can come from bad things 1 I am more patient and empathetic with my patients I truly understand what it means to be ill At times I have felt more kinship with my patients than with my physician colleagues When my partners at my previous job were being so cold my patients were giving me hugs and kisses and crying for me 2 I pick and choose what I will get upset about Getting angry or crying flairs my POTS symptoms 3 Not everyone cares or has capacity for compassion I try not to take it personally It is THEIR flaw I try to forgive and go on Anger towards them gives THEM my power 4 There are some wonderful wise people out there 5 I count my blessings and am grateful for what I do have I am most grateful for two healthy delightful children despite the pregnancy triggered POTS 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

    Original URL path: http://www.dinet.org/index.php/community/member-stories/76-karyn-s-story (2016-04-26)
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  • POTS Recovery
    in the sense of a self fulfilling prophecy However I couldn t believe that it was the sole cause By then I had tried to emotionally remove myself from the situation to be as objective as possible I tuned out and ignored my symptoms for the most part but couldn t help but clinically observe and note them at peak occurrences In short I was forced to analyze them in a detached manner by their sheer frequency and pervasiveness I couldn t help but doubt the doctors claims that it was no big deal when my heart was constantly redlining and misfiring almost every beat for hours on end The experience actually forced me to mellow out and relax more as well as re prioritize and be thankful for the good moments I stopped taking the drugs prior to the EP test and did not resume them as I was uncomfortable with the potential long term side effects of these drugs They didn t seem to work anyway and I felt that I should just learn to live with these symptoms if they were as I d been told simply annoying and not serious Additionally I felt that the drugs to control the palpitations might adversely affect the erratic elevated heart rate by slowing it down too much at the times when it was normal I started taking extra magnesium and calcium daily to see if that helped any of my symptoms I looked at the Holter monitor results along with some other tests and found apparent inconsistencies which when pointed out to the doctor would get a response of Well I ve really never seen that before accompanied by shoulder shrugs and head scratching I was getting pretty frustrated with the whole thing by now and continued to deteriorate I questioned my sanity and wondered if I was just being a paranoid hypochondriac After all this was the 21 st century and I had seen several reputable cardiologists and specialists I had spoken or corresponded with many more and they all said I was fine But I didn t feel fine I knew my body and things were not right During periods when I felt OK I d tell myself See it s all in your head Then things would go nuts again and I d think Forget the experts I know something is definitely not right I began to fear that I either had some crazy terminal disease or even worse that I would have to go on living this nightmarish existence I went from not wanting to take any drugs to trying anything and everything that might help I began practicing conscious breathing techniques and read up on skilled relaxation meditation and holistic alternative treatments I truly believed in mind over matter and the body s ability to heal itself I tried acupuncture and went to some voodoo healer with a testimonial track record of miraculous cures disappearing tumors cripples walking again etc who basically knocked me down with weird sadistic treatments Nothing seemed to help my symptoms I began to wonder if I had exhausted all possibilities of conventional medicine other than stronger drug therapy Was I wrong to think that these three separate symptoms could possibly result from a common cause and should be addressed as such or should each symptom be treated independently of the others as had been the approach so far Were the frequent ectopics and wildly fluctuating elevated pulse truly inconsequential as I was told or could they be taxing my heart by adding additional load and strain to it Should I try ablation again and if so would it improve the erratic pulse and pain or just impact the palpitations Would an endocrinologist be better qualified to address my crazy elevated erratic heart rate if it was due to a nervous system imbalance or a glandular disorder like pheochromocytoma Was I being foolish or doing damage by not wanting to take daily medication for the rest of my life Or was this all psychosomatic Was I just being a hypochondriac who should go see a psychiatrist I wanted to feel normal and good again but if that wasn t possible I wanted to manage as best as I could and move on Contrary to what I d been told these symptoms were not improving with time and in fact were increasing and worsening Finally in August of 2001 18 months after noticing the palpitations my cardiologist stumbled onto something by chance It seemed he had a physician friend and now patient with Addison s disease who had been diagnosed with POTS as well He was pretty sure this was what I had and that he had found the missing piece of my diagnosis So I took a tilt table test and sure enough I was off the scale far exceeding the 30 bpm heart rate increase from supine to standing which is the clinical definition of POTS My heart rate went from 50 to over 100 bpm in about 10 seconds and it never stabilized or dropped down it just kept creeping up until they concluded the test At last vindication I was right all along and they had been missing something But my elation soon vanished as I poured over the Internet info and saw bleak depressing stories While my doctor had succeeded in diagnosing POTS he had no idea how to treat it He tried drugs to lower my blood pressure which seemed stupid to me because I was hypotensive at rest and thought that they might lower my blood pressure to dangerous levels They didn t work anyway I researched doctors and institutions familiar with treating POTS I sent all my records to Vanderbilt which rejected me on account of the arrhythmia because it wasn t purely POTS and was too complicated That crushed me The Mayo clinics didn t want me either By now I was not eating or sleeping and was getting desperate I had lost 30 pounds and I felt bad all the time I felt as if I was hung over and sleep deprived Along with this I felt like I drank a pot of coffee smoked a pack of cigarettes and had to dig a ditch in the hot sun without any water I was shaky hollow and jittery with no respite available to me through rest I had completely abandoned any sort of social life and withdrew from most of my friends As soon as I found out POTS was a nervous system disorder I quit my painting business because I was sure chronic exposure to paint thinner mineral spirits read the warning label coupled with the cold viral infection which was the common catalyst in many POTS stories caused my condition So I wasn t working anymore and was quickly becoming non functional and depressed My doctor prescribed Paxil which really ticked me off and I refused to take it Because POTS was nervous system related and by now I was confident I knew much more about it than my cardiologist I decided to see a local neurologist Fortunately he was familiar with POTS and confirmed that there were many different causal factors He said that the effective treatment of POTS depended on the cause Just as a fever is simply a symptom attributable to various causes one would treat a malarial fever differently than one caused by heat stroke or the flu He further explained that because it was a disorder of the nervous system there was definitely a mental component to it What I was experiencing at times were symptoms of a panic attack but fortunately in my case without the panic just the rapid heart rate sweating agitation etc He compared it to clinical data of asthmatics who feel they cause their attacks The studies show they first experience a bronchial spasm and then freak out not the other way around The physiological response by the brain to the body s symptoms is the alarm going off due to a problem not a psychosomatic manifestation While that was reassuring it still didn t help me in any direct way Earlier that summer I had decided to stop ignoring the arrhythmia and sought out the experts in electrophysiology The guy who did the first RFA locally wanted to do it again this time without anesthetic but I was hesitant because I didn t like his attitude While I was recovering in the hospital overnight following his original EP test ablation the nurses became alarmed a couple of times when my heart rate was below 40 bpm while I was sleeping The following day my heart rate was 150 bpm while standing and walking for the first time since the procedure This doctor completely dismissed my accounts of this elevated heart rate being part of my problem he said I was just dehydrated and made me sit with a fluid I V for four hours He seemed to be angry that the procedure didn t work because it was a blemish on his record rather than demonstrating any genuine concern for me the patient He had already fried two spots on my heart to no avail and I figured if I was going to go through that again I wanted the most renowned reputable experts in the country to perform the second ablation This led me to make an appointment at the Cleveland Clinic Foundation s E P department for later that fall While later researching POTS experts I was fortunate to find that the CCF had a doctor who treated POTS in their Syncope Clinic So I figured I could kill two birds with one stone and try to fix the arrhythmia with another RFA and treat the POTS while I was there They were kind enough to allow me to book an appointment with the POTS doctor after my scheduled electrophysiology appointment So off to Cleveland I went where the syncope doctor performed a series of tests to confirm my POTS I had another tilt table test where they were impressed with my heart s ability to quintuple its rate from 40 to 200 bpm within a few minutes I also had blood volume hemodynamic and isuprel tests All these confirmed the POTS diagnosis and specifically found that I had hyperkinetic circulation as well as an imbalance in my beta adrenergic response I was told to stop all strenuous activity for 6 months to a year and to take a combination of Lopressor to slow my heart rate down and Levsin to help the beta adrenergic imbalance I was told that I just needed to give my body time to equilibrate and I would probably be OK Would I ever ski or run again Could I fully resume my previously active life Only time would tell Meanwhile the EP doctors said I had a rare but textbook EKG signature that they had seen in two dozen cases over the last couple of years and successfully treated It turns out that my arrhythmia was being triggered NOT in the right ventricular outflow track as the first doctor had thought and ablated but in the aortic cusp This was a much riskier ablation because obviously if the aorta was nicked during the operation well it would not be good I decided to go for it and returned to Cleveland later that month to undergo a second EP RFA procedure to hopefully cure my arrhythmia I ve neglected to explain what is involved in a RFA Similar to an angiogram they put you under light sedation tap the femoral artery in the groin and run a wire up into your heart Then they stimulate various areas of the heart with electrical impulses and drugs to try to find the spot that is generating the extra signal it s kind of like looking for the needle in the haystack Once and if they find the culprit spot they then zap it with radio waves to fry it into scar tissue which is electrically neutral and eliminates the aberrant signal causing the ectopic beats Unfortunately many arrhythmias are sensitive to sedation and disappear during the procedure as was the case in my first RFA The CCF docs told me they used atypical drugs that were different than those used in my first procedure to prevent this and not to worry So they did the ablation and felt it was pretty successful save the fact that after four hours on the table my arrhythmia ceased again I had not one ectopic beat in ninety minutes while under sedation compared to my normal several hundred per hour 24 7 for the past 20 months They felt they might have to do it again in a few months to clean it up a bit depending on how things progressed with my recovery Great I thought Once again doctors dismissed my concerns only to have my fears realized after the fact But hey what s another round of poking my heart with wires Even worse was that although my arrhythmia had been 95 PVCs up to this point following the second RFA the composition of my arrhythmia flip flopped from PVCs to PACs I had them slap a Holter on me the day after the RFA during recovery because I could feel something was different By this point I was so attuned to my skips that I could accurately call out what was a PVC and what was a PAC while undergoing echoes and EKGs The Holter showed an average of 300 ectopics per hour While clinically PVCs are more serious than PACs the PACs seemed more bothersome to me This change in ectopic composition was explained to me as a probable rebound effect The sudden absence of near constant PVCs had my heart reeling and the PACs were stepping up to take over the recently cleared electrical pathway I just had to wait a few months to see what transpired So I returned home with instructions to relax take the drugs and see what happened to both the POTS and arrhythmia symptoms Additionally I had a prescription to start a level 3 cardiac rehab program to help the POTS symptoms It took several months to get the insurance company to approve this during which I definitely felt better as far as the POTS symptoms but the arrhythmia was bad as ever My elevated heart rate seemed to be normalizing by no longer redlining and by responding appropriately to exertion exercise and rest recovery I d say I was back to 50 60 functionality of my pre POTS condition The arrhythmia was actually getting worse though Further Holters supported this conclusively they showed a maximum of over 800 PACs in one hour and that wasn t even the worst day I was resigning myself to returning to Cleveland for another round of RFA when something strange happened I woke up one morning and felt good Normal My heart was actually beating regularly I sat there in bed for a half hour waiting for the skips to start After a couple hours without a skip I was incredulous As quickly as it had begun it seemed to be gone Just like that It was like flicking a switch on and off It was the darnedest thing I had to restrain and temper myself because it was too good to be true The next day was as good as the first After a week I couldn t believe it Was it really possible Could I really be over this thing after more than two years The doctors were finally right and I just had to give it time to let my body equilibrate and adjust to the procedures and treatments I finally started the cardiac rehab program and felt pretty weird because I was this 30 year old guy in with a bunch of geriatric heart attack patients The program was very conservative and initially seemed like a waste of time but I had prepped the staff with all the POTS info I had and put them in touch with the experts at CCF So I acquiesced to their expertise and eagerly went as often as I could After a month or so they felt I had progressed to the point where I could exercise on my own I was really feeling like my old self my pre POTS self physically Mentally it was much more of a struggle I kept waiting for the POTS or the arrhythmia to suddenly come roaring back I was constantly checking my pulse The fears were always lurking in the back of my mind It was as if this recovery was just a temporary reprieve a quick taste of freedom before being enslaved again like some cruel joke But the recovery didn t end I took an entry level position with a software firm and started working again for the first time in nearly a year I started jogging again I didn t go too far or too fast but I was running and asymptomatic on all fronts It was amazing That winter I returned for the first time since I had departed to my old ski town to ski with my buddies for four days I was very nervous as I still considered myself to be in terrible shape and was worried about overdoing it For the most part my friends were unaware of what I d gone through and hence decided to punish me hard on the hill To them I was just another fat out of shape city guy who used to live here and deserved to be worked over hard for old time s sake Other than sucking wind due to the altitude and lack of conditioning I had no problems and had a blast For me that was the true test The fact that I could be an out of shape desk jockey and go back to

    Original URL path: http://www.dinet.org/index.php/community/member-stories/75-pots-recovery (2016-04-26)
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  • Medical Field Worker Perspective....
    made myself an appointment with an infectious disease MD that I knew She said that I had probably had a severe viral infection but I was coming out of it She also told me that I was too complicated for a family practice MD and to get an internist I did get an internist and he changed my blood pressure medicine I began to have lots of problems My blood pressure would be high enough for a stroke and then an hour later it would be low enough to pass out When I had seen the internist 10 times in a month he told me that I had an attitude problem and that my anger was probably causing my blood pressure shifts Well I hadn t been angry until then but he changed that That was the last time I saw him I saw a new internist and he had no idea what was wrong with me After doing several thousands of dollars of tests all negative he sent me to a urologist The urologist repeated half of the tests and said I needed to go to Duke or Bowman Gray large teaching hospitals in North Carolina He didn t know what was wrong either While crying to my psychiatrist he asked if I had gone to a cardiologist he knew in Hendersonville I had not but I managed to get an appointment I had all my records sent to him and went in waiting for the whole thing to begin again Within 5 minutes he said Well I know what you have and that s the good news the bad news is it is incurable He told me that the 2 week illness I d had was a brain stem stroke which very few people survive I did not even know I d had it though I did go blind for a couple of days during that time It had affected my left side My eyes were rapidly subtly twitching back and forth and my gag reflex was gone He said the stroke was caused by an infection not a clot He told me that I had POTS a form of dysautonomia and to check it out on the computer He sent me for an oblique cervical spine MRI not a normal view When I read the report I could not believe it Part of my brain stem was in my neck and part of my spinal cord was out of the spinal canal Chiari He put me on Lortab pain Zanaflex muscle spasm Lasix fluid retention Aldactone Tenormin and Midodrine for my blood pressure I was of course still on the anxiety and depression medications from the psychiatrist With a little fine tuning after my first experience with hallucinations this treatment seemed to settle my blood pressure down better than it had been in a year Then I had my knee replaced and got a bladder infection in the hospital That sent me off to the races again

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  • Ever Been Hit by a Wet Kipper?
    he spent many days amusing himself trying to get rid of me by fair means or foul and I incurred more injures on top of those from the car crashes All of this in addition to my ongoing underlying problem meant I was really starting to suffer In 2000 I made the courageous decision that enough was enough and I left him high dry and penniless By now he was facing actual bodily harm and attempted murder charges against me He was arrested and committed to a psychiatric hospital In the mean time I packed up most of the house and moved my son and myself to wonderful glorious Devon This was a place where I had spent many years in my youth and where I felt safe again This was the turning point in my life Now divorced I bumped into a man I had known when I was sweet 16 He was divorced and had also returned to Devon to start a new life It took just one look and I just knew From that day until this the emotional security and financial side of my life was settled Together we are like cheese and pickles Beauty and the Beast Romeo and Juliet made for each other In 2002 we married at a very emotional ceremony by the sea It was supposed to be a quiet family affair because I was so ill at that time but our village had other ideas The registry office was packed to the rafters as we recited our own special vows hand written by me to each other Everyone in the whole room started to cry including the registrar our local vicar all of our own children and us not a dry eye in the place However all was not well in paradise A wonderful romantic trip around the Caribbean set off the worst bout of autonomic problems I have ever had in my life and I ended up in the ship s hospital with more mystery symptoms Since that day my health has been in a downward spiral So it had been some 35 years since Sir Roger Banister declared that he knew I had something but he did not know what it was In 2002 I was diagnosed with Autonomic Nerve Dysfunction by chance A doctor was running tests for geriatric patients and heard a group of consultants discussing my strange problems He suggested that he test me as well as there was nothing to loose I was given a tilt table test The rest is history The worst thing about being like this was that I had to give up running my own companies But then I discovered that I could write and make people laugh so one cancels out the other in a way and now I write for a living My condition has its good days and bad days and then there are the days when I just cannot cope because every single nerve in my body is screaming at me I was once asked by a very eminent professor to describe to him the face neck pains I feel Tell me in as much graphic detail as you can he said Thinking about it for a couple of minutes I replied It s like being hit on the side of the face with a large wet kipper that s been dipped in sand You have the sharp dragging pain followed by the side of your face being highly sensitive like the skin s been taken off with sandpaper You feel like your eyes are being dragged out of the sockets each tooth has an abscess under it and half a gallon of water is cascading out of you eardrum He said nothing So when I have one of my really bad days I think of my sandy kipper smacking all those doctors around the ears for all the years when I was treated like a raving lunatic their eyes popping and teeth screaming Oh that makes me feel better I do try to cope as best as I can with all the little nasties to which my body subjects me The tiredness is overcome by sleep sleep and more sleep The pain which has now reached a rather chronic level is treated with high powered painkillers Oh Pretty lights and shapes and why is the room moving The sickness and bowel issues are a bit more of a problem The sickness is sometimes held back by drugs but more often than not I don t take them soon enough This leads to my hubby with his nose covered by his t shirt ready with his plastic bucket to assist me He cannot stand the sight or smell of sick and has on many an occasion merrily joined me in the bucket We have had a husband and wife session while poor 15 year old son was left with the aftermath Now that adds a new twist to sharing everything together As for my digestion system well by now I must have taken enough laxatives to move the entire bowels of the world I ve eaten a plantation of pineapples and kept Jamaica banana industries in profits for years This is in addition to the hundreds of stewed prunes that have unceremoniously been stuffed down my throat at night in an effort to shift the problem I can tell you that there have been times I wondered how I haven t pulled the radiator off of the bathroom wall or bitten a chunk out of the towel rail with the bowel contractions I ve had Any poor soul entering my house on such an occasion would think I was giving birth with the amount of noise coming from the bathroom They would have to be quickly assured that hot water towels and a midwife is not necessary at this time My sweats leave me dripping all over little trickles run down my back Bigger trickles run on

    Original URL path: http://www.dinet.org/index.php/community/member-stories/73-ever-been-hit-by-a-wet-kipper (2016-04-26)
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  • Christine's Story
    and still no diagnoses other than stress and low BP Finally my cardiologist sent me to Toledo to see a specialist At this point I was so depressed that I didn t think this doctor would be able to help I was terrified as I walked into his office but he put me right at ease This doctor has been my saving grace He s finally given me a diagnosis I have dysautonomia with POTS and Mitral Valve Prolapse I am now taking different meds to try to increase my blood pressure I still faint almost every day and am always getting injured Still I have hope that one day my life will get back to normal Sadly it s been a relief to find out I truly have something wrong with me At least I know I am not going crazy In The News Be brave Give yourself or someone you love a gift to support and inspire Gorgeous bracelets necklaces earrings even scarves all engraved with the words be brave So many products to choose from in so many colors and styles These beautiful accessories are a reminder to be brave something we all need from time to time Best of all 10 from the sale of every bravelet goes directly to DINET to help us continue our mission to support and educate Find your special style and support DINET Buy one or two today Visit DINET s online kiosk on the Bravelets page at www bravelets com bravepage dysautonomia information network dinet Volunteer Opportunities at DINET We re looking for readers on our forum DINET is looking for volunteers to help us keep the forum a positive experience for its 4 500 members and growing Readers are responsible for viewing posts and material If you are interested in becoming a Forum Reader please contact us to complete a volunteer application We look forward to hearing from you Contact dinetandforuminfo dinet org Do you have a passion for the written word DINET s quarterly newsletter has room for a few new writers Applicants do not need to have professional writing experience but do need solid language and grammar skills This is a wonderful opportunity to flex your creative muscles and provide information and support to the dysautonomia community If you are interested in joining our team please contact webmaster dinet org An application and at least 2 writing samples will be required Studies Brain fog inflammation and obesity key aspects of neuropsychiatric disorder improved by luteolin From Frontiers in Science Brain fog is a constellation of symptoms that include reduced cognition inability to concentrate and multitask as well as loss of short and long term memory Brain fog characterizes patients with autism spectrum disorders ASDs celiac disease chronic fatigue syndrome fibromyalgia mastocytosis and postural tachycardia syndrome POTS as well as minimal cognitive impairment an early clinical presentation of Alzheimer s disease AD and other neuropsychiatric disorders Brain fog may be due to inflammatory molecules including adipocytokines and histamine

    Original URL path: http://www.dinet.org/index.php/community/member-stories/72-christine-s-story (2016-04-26)
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