Stories page 12

My name is Barb; I am 56 years old now but started dealing with this in 2006 after my gallbladder was taken out.
 

After having my gallbladder out, the unknown began.  At the time, I had no idea what was going on, other than being taken to the hospital several times.  After many doctor visits to see what was happening to me, I said something to my internist doctor, and he said I needed to see a cardiac doctor.  I was set up for a tilt-table test. The doctor told me that I have neurocardiogenic syncope, vasovagal, etc. 

I am on a beta-blocker now and must tell all my doctors before anything is done to me.  I have been on a beta-blocker since 2006 and also started using salt tablets. If I start feeling funny, I put half of a salt tablet inside the cheek of my mouth (which helps).
 

It is so hard to tell people what I went through with this disorder. I would go into an epileptic-type seizure, draw my arms to my chest, and shake all over. I couldn't hold my legs still, and I talked like Katharine Hepburn. (I have not passed out but have been so close).  I would lose control of my bowels and then be so tired after all the things that had happened that I would want to sleep.  After a seizure, I would go home and sleep between 4-10 hours depending on how bad the seizure was.
 

I can no longer work due to all of my medical problems. I do play the mountain dulcimer and bowed psaltery, but I can't sit long due to my seizures; the prolonged sitting can activate a seizure. I can have restroom problems, and if I don't make it to the restroom, I can have, and have had, a seizure. If I become sick, such as with a sinus infection, it can bring on a seizure.  I tried to perform at church for all 3 services, and the last service I had to sit out because of having a mild seizure.  Along with all of this, I have bursitis in both 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.

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It’s All in Your Head
 

by Jordan Relph

Hi guys! My name is Jordan Relph, and I’m 13 years old.

It all started February 25^th, 2009. I got the flu and had a fever of 102.7. I was very sick. The second week, I tried to go back to school, but my mom came to pick me up because I could not stop coughing. After that, I slept a ton. I would wake up at 11:00 AM and eat; then I would go back to sleep. I would wake back up around 7:00 and eat and then go back to bed. My pediatrician diagnosed me with mono and told me to get lots of sleep. He said that I got mono because I was still recovering from pneumonia and the flu.

Two weeks later, my pediatrician said that I had CMV, a cousin of mono. I kept sleeping almost all day and night. Finally, I went back to school on March 23 but fainted during mass (I go to St. Thomas) and had to be brought home in a wheelchair. That night, I was at the hospital with paralysis. I was completely unable to move and was fed, bathed, and helped to the bathroom by my mother, friends, and family. The next day, we left the hospital because the doctors weren’t doing anything to help me besides the CT scan.

I stayed at home the next few days and was continually visited by loving friends and family. Then I was at Via Christi for five days. I was catheterized even though I had a history of kidney reflux. All the doctors kept saying that this was an anxiety problem and that it was all in my head. The only people who stood up for me were the psychologist, psychiatrist, and my family, of course. While there, I had an MRI, spinal tap, bloodwork, EKG, and psych testing. All were normal. Therefore, the doctors assumed it was mental since they could not figure it out.

My friend’s stepfather, who is the best heart doctor in Wichita, read my EKG and said that it was abnormal when the other doctors had said it was perfectly fine. The psychiatrist told us to stop the amitriptyline, which was given to me for migraines. She said that it was not approved for children and that my pediatrician should 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.

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Dianne's Story: Learning Self-Management

by Dianne
July 2010
 

I was diagnosed with cardioneurogenic syncope in late 2008 based on the post-exercise collapse of my blood pressure. I waited many years for my illness to be named. I was 14 or 15 when I first noticed that I didn’t have the stamina of my friends, and I was 43 when I was diagnosed. I’m not sure whether my cardiologist and neurologist placed me in the right spot on the spectrum of dysautonomia, but I’m satisfied that I sit somewhere on the spectrum.

Being ill without good reason over a long period of time was physically, emotionally, and professionally devastating. Without a diagnosis, there had been no prognosis, no treatment, no way of knowing how best I could manage my symptoms or prevent exacerbations of my illness, no support group, and no capacity to plan my life or to know how long I would live or work.

My Experience of Dysautonomia

Over decades, my symptoms had been attributed to a range of different causes. At 18-19 years, as a trainee nurse, I thought my general debilitation was due to back injuries and shift work. In my early twenties, when I was no longer a nurse, my ongoing symptoms were thought to be caused by food intolerance. In my mid-twenties, I was very sick after a trip to India, and it was attributed to allergies or a mystery bug. In my mid-thirties, it was thought my ongoing ill health was caused by a broad grain allergy; in my late thirties, it was thought that I’d had pericarditis and maybe mild lupus. Even now, it is unclear whether I had a succession of different illnesses or just one that was progressing or undergoing periodic exacerbation.

My symptoms didn’t seem to provide doctors with any clear direction. In the early days, fatigue was my constant symptom, varying only in severity. Other symptoms would come and go including nausea, night sweats, gut, heart, and respiratory symptoms, chest discomfort, small seizures, panic disorder, neck pain and soreness at the back of my head, exercise intolerance and post-exercise collapse, and problems with my speech.

For around five years in my mid-thirties, I had two cycles of anemia of chronic disease every year. Although the cause was uncertain, I recovered each time with 2-3 weeks of bedrest, and it became clear that I was much sicker. My iron fell more quickly the more physically active I was.

It was around this time that I began collapsing 1-1 ½ hours after exercise. I was not passing out but slumping over, unable to get up for five minutes or so, then being overwhelmed with the need to sleep. For a number of years I refused to give up exercise. Two or three times a week I would walk around the lake or work out at the gym, rush home and wait for my collapse, then sleep for several hours. At forty, I was too sick to continue exercising.

Managing My Illness

From that point on, I used physical inactivity and bedrest to manage my illness. My only other tool back then was ibuprofen, which I took in a small dose at bedtime to stop my night sweats. Even with these few tools, I was better able to manage my illness, although periodically I would still have exacerbations brought on usually by overwork, physical activity (e.g. moving house), or lack of rest.

Sometimes I would trade an exacerbation for overwork, confident that I’d recover with 2-3 weeks of bedrest afterward. I no longer do this, having struggled to recover from an exacerbation in 2008. After overworking for just six weeks, all of my symptoms worsened as expected, but this time I developed a succession of infections (tooth abscess, sinusitis, laryngitis, conjunctivitis, tonsillitis). For the first time, I failed to recover with bedrest. My nighttime respiratory symptoms recurred, and I became periodically incontinent. My recovery since then has been very slow.

My focus now is on preventing exacerbations of my illness, as well as on daily management.

I’ve never done well on medications. At diagnosis, my cardiologist wrote me a prescription for three drugs she thought might be helpful: Rythmodan, which I couldn’t take because of an allergy to the maize starch filler, Aropax, which left me semiconscious even at a quarter dose, and Inderal, which amplified the effects of my illness.

I’ve gone downhill on IV vitamin C, which my doctor was certain would give me a boost. Two successive courses of iron injections in my mid-thirties coincided with a dramatic decline in my health from which I never fully recovered. Additionally, I became very sick very quickly when a doctor tried treating me for mild lupus (with an antimalarial).

I was lucky enough to find a review article by Dr. Blair Grubb[1] which provided information on non-drug approaches to managing dysautonomia. If anyone sees Dr. Grubb, please give him my thanks and best wishes, and tell him an Australian woman is grateful for his work. In case it is helpful to anyone, I’ve listed below the approaches that have worked well for me.

I’ve also tested every possible alternative therapy. I can honestly say that I’ve had benefit only from meditation (for relaxation), cranial osteopathy for musculoskeletal problems, and simple treatments for nausea.

Symptom Management
 

Fatigue: General management of my illness helps to minimize fatigue. I reduce fatigue by getting plenty of sleep and rest as well as prevention and treatment of my other symptoms. Laying flat also eases most of my symptoms, particularly fatigue. Other approaches I’ve found effective include:

·        Fluid intake – Drinking fluids helps. I have little or no thirst, so I find it a chore. I always thought that the need for fluids was exaggerated. At first, trying to increase my fluid intake, I would drink 1.5 liters through the morning and then think ‘phew, I’m done.’ It became clear that I was feeling well in the morning but really fatigued for the rest of the day. To someone who feels thirst, it makes sense to space out fluids; I was really slow to work that out. Now I have a glass of water on rising and another at 9 AM, 12 noon, 3 PM, 6 PM, and around 8 PM.

·        Diet – Salt really does help. I salt my food and, if I’m particularly fatigued, a salt tablet or salty snack is often helpful. Also, I’m not fanatical about it, but I generally don’t eat big carbohydrate-based meals of pasta, rice, bread, or potatoes. I’ve only heard of a couple of other people with dysautonomia feeling more fatigued after eating carbohydrates,[2] but it’s also the case for me.

·        Compression hose – Wearing compression hose stops blood from settling in the legs on standing. I use Venosan stockings. They don’t give maximum compression, but I can wear them to work without looking weird. They are expensive and hard to get on, but I’m more fatigued without them.

·        Physical inactivity – I always felt fabulous when I was exercising but much more fatigued afterwards, particularly when I started collapsing. My fatigue increased if I persisted with exercise, and my cardiac symptoms worsened (chest pain, irregular heart beat). I avoid exercise now and rest often. I also have two month-long breaks every year to rest.

Night sweats: On the advice of an immunologist, in my late-thirties I started taking a small dose of infant ibuprofen at bedtime. This stopped the night sweats and gave me better, unbroken sleep. After many years, my night sweats stopped about a year ago, so I stopped the medication.

Soreness at the back of the head and neck pain: When my illness is very active, I get a deep soreness at the back of my head and neck pain that makes it hard to turn my head. These symptoms are easily treated, and I feel much less fatigued without them. My osteopath can fix the neck pain but not the soreness at the back of my head; my neurological physiotherapist can fix both.  This year I’ve been seeing both therapists every 1-2 months to try to deal with these symptoms early and prevent them from occurring.

Respiratory symptoms and chest discomfort: At my sickest, I woke at night gasping as though my body had forgotten to take a breath. At other times, it’s felt as though the muscles at the back of my throat have collapsed, blocking my airway. For years I expected to suffocate in my sleep. I can also feel as though I’m not getting enough oxygen, as though my lungs aren’t expanding or I’m trying to suck oxygen out of a thick fog.

During my last exacerbation, my general practitioner tried treating me with Lexapro; it gave me insomnia, stomach pain, and tinnitus, even at a quarter dose, but it quickly and effectively relieved my respiratory symptoms. (I managed to take it for around six weeks.) My respiratory symptoms are also eased by lying flat.

These symptoms are accompanied by chest discomfort and sometimes a mild sensation of choking; it’s as though someone has stuck a garden hose in my chest and overfilled my chest cavity. During one exacerbation of my illness, an echocardiogram showed a bit too much fluid around my heart, but it is unclear whether this was at all relevant. The chest discomfort is also relieved by Lexapro (and lying flat).

Nausea: I’ve found ginger helps. (I buy ginger chews at my health food shop.)  I’ve also found help from peppermint oil (smelling it). It helps to eat small amounts often. My physiotherapist can also relieve this symptom by working the thoracic area of my back (around T12).

Things I haven’t worked out: The sicker I am, the more difficulty I have with my speech. I have problems with word-finding and slurring; sometimes I put the wrong words in sentences, and sometimes I structure my sentences as though English is my second language.  I’ve only had panic attacks when trying to speak. I think I’ve tried everything to fix it; nothing has worked.

My bladder symptoms resolved slowly after my last exacerbation. I don’t know why; these symptoms were unexpected, and I thought they’d be permanent.

Small seizures came and went without explanation over an 18-month period in my early forties.

Sometimes my heart rate is irregular, irrespective of how well I manage my illness, and this increases fatigue. If my heart races for whatever reason, sometimes my heart rate stays up for hours.  My brain doesn’t send the message that it’s time to slow down, and I haven’t yet found a way to settle it myself.

My gut doesn’t work well. I no longer expect it to.

I haven’t yet found a form of exercise that I tolerate.

Flying aggravates my illness; I don’t know why or how to fix it.

I’m cheerful, even when I’m very sick. I can feel sadness but not joylessness. Am I physically incapable of depression?

Finally
 

I used to dream of a diagnosis that would lead to a cure. Then, I’d live a full life. I’d get fit, climb mountains. Instead, I find myself climbing the same mountain I always have - just no longer blindfolded and alone. My illness still challenges me every day. It seems to have progressed, but a diagnosis has meant that I can now help myself. I can now optimize my functioning by preventing, managing, and treating my symptoms. I now have access to scientific literature that is relevant. Importantly, I now have access to other people’s ‘stories.’  These have been an important source of comfort, information, and support. I want to thank everyone who has taken the time to share their story. I’m really pleased to finally share mine.
 

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