Ideas and opinions expressed in Personal Stories belong to each individual author and are not necessarily those of the Dysautonomia Information Network. Personal Stories are in no way a substitute for professional medical advice, diagnosis or treatment. Readers should not try any treatments discussed in Personal Stories without first obtaining a physician's approval.
The first dizziness incident occurred on holiday in France with my husband. I was 5 months pregnant at the time, and my husband had splashed out on a lovely dinner at an auberge in the countryside. The food was delicious, and I'd had quite a bit to eat and drink when I felt really dreadful and very light headed (not drunk, I promise!). I felt so bad that we had to abandon the meal, much to my husband's disappointment! I thought no more of it and continued with life, putting any tiredness or feelings of fainting down to the pregnancy. After giving birth to my daughter, I noticed feeling very unwell and dizzy after meals. At the time, I thought it was because I had resumed drinking caffeinated coffee, and it was having an adverse effect on me. Two years later, I gave birth to my son by caesarean section, which was very traumatic, and I had to go back into hospital after giving birth as I had contracted an infection of the womb and was pretty ill.
After this time, things went gradually downhill. I was having lots of visual disturbances and breathlessness, and it got to the stage that I had to stop several times when walking my children the short, flat journey of about half a mile to school each day. I was also suffering 'coat hanger' pain across my neck and shoulders. I went to see my GP who was very sympathetic but didn't really know what was wrong with me. He referred me to a local neurologist, who in turn referred me to Professor Mathias at St. Mary's Hospital in London. I went into the neurological hospital in London's Queens Square as an inpatient and was subjected to a wide variety of tests including tilt table, 24 hour blood pressure monitor, etc. It was here that I got the diagnosis of orthostatic hypotension. This drop in blood pressure meant my brain and heart were not getting a constant supply of blood when needed for everyday activities such as eating or walking. This explained my earlier 'caffeine intolerance' after eating and my difficulties in walking the children to school.
Initially, I explored non-pharmacological measures such as special stockings, drinking lots of water, etc., but they didn't make much difference, so I was put on fludrocortisone. Unfortunately, my symptoms continued to progress, and I was put on ephedrine in addition to the fludrocortisone. After a few years, I was prescribed midodrine in addition to the other medications. Recently, I have been struggling to pursue a 'normal' life as my symptoms just seem to be getting more severe. I have had a few isolated fainting episodes after eating. My blood 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 December 2003, I got a new job at the Medical College of Wisconsin, my first full-time job in years. Iíd been lucky to work a minor part time job (mostly on Saturday mornings) for a friend, and stay home with my kids the rest of the time. Then in the fall of 2003, my husband left his profession to start a new phase of life working for himself, making it necessary for me to pick up the responsibility for benefits and regular income. My youngest child of three started school that year, and having Dad at home to drop off and pick up from school made it much easier for me to leave that stay-at-home life behind.
That December also brought the horrible news that one of my nephews, then age 18, was diagnosed with leukemia, and not just any leukemia. He had a juvenile form that is dreadfully difficult for anyone over age 12 to overcome, and it was a ďspecial,Ē mutated form that was resistant to many treatments. My life was rocked by this news, and I found myself emotionally and physically taxed by all the stressful events happening in my life. My GI function was all over the board. I was getting weaker by the day. I had a difficult time swallowing without choking (and as a singer, the vocal weakness became a source of constant irritation and frustration), and I had abdominal pain and nausea constantly.
The surgeon I worked for made a phone call for me and got me into the GI clinic with his choice of physician. They tested me for GERD and found nothing. But my GI doctor is a brilliant man who had once treated a patient with problems similar to mine, related to damage to his C6 nerve. This doctor saw my history, including the 2 bad car accidents Iíd been in that had caused whiplash in the same place on my neck. He ordered an MRI of my cervical spine and, yep, you guessed itóthey found C6 nerve damage. He immediately referred me to Dr. Safwan Jaradeh, who did an EMG, then a small-fiber EMG, and diagnosed me with myasthenia gravis in the fall of 2004. Blood work also showed very low B-12 levels, so I started on oral (sublingual) B-12 and Mestinon (pyridostigmine).
While both of these helped me, I still had periods of severe dizziness, and the abdominal pain and nausea came and went. I had a tilt table test done, which showed nothingóno POTS. I also started going to our SpineCare clinic for back and neck pain, mostly related to sitting in a horrible office chair all day long. While the PT and chiropractic care helped, the pain never completely went away, and my boss finally ordered a good chair for me. I still had pain but not nearly as much. I got on with my life. The muscle twitching and excessive foot, leg, hand, and facial muscle cramps started to ramp up, but were mostly bearable.
Dr. Jaradeh referred me to Dr. Alexandru Barboi, who was starting up a new specialty clinic for people ďlike meĒ with myasthenia. We had a wonderful first visit where we went over, in detail, the past few years of my life and what had led to my diagnosis. Then he asked questions about my childhood and adolescence, ordered a ďre-doĒ of my tilt test, and then had a discussion with me about dysautonomia vs. myasthenia. The light went on! All those symptoms that seemed so completely unrelated suddenly coalesced into a ďrealĒ diagnosisósort of. I know you all understand what Iím saying.
Soon after this, I got a new position in a different department, and it was a job I was very excited about. The job was wonderful, but the physician I worked for was a nightmare. I was sick dailyónausea, diarrhea, abdominal pain. I 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. Itís helpful, and I canít 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, Iíve learned a few things over the last year, in particular, that have sustained my good attitude about life in general. Iíve discovered that Iím one of the luckiest people with dysautonomia in the world because I have Dr. Barboi in my corner. Iím 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 canít 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 Iím 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 itís 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 patientís 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 Iím afraid that if donít, 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 itís okay to just sit down and be sick, to huddle under a pile of blankets because I canít 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 donít have that limitation often. But I still understand the pain, the frustration, the weakness and the fog that envelopes us all on different levels at different times. My message to all of you is this: take it one day, one hour, at a time. Live in the moment now rather than waiting for a better one. Donít waste time fighting this because youíre just fighting yourself. It is who you are, so embrace it, get past it, and get the better of it. Live for today, and live well.
I haven't had the easiest life. Iíve moved from place to place, scared my mom would get arrested for drugs. Every time my dad got out of prison, I would have hope again that I had someone. It always seemed that once I believed he would be there for me, he would do something so stupid and selfish and get sent away again. So I began to rely on myself at a very young age. I would do everything for myself and just appreciate it if I got some help. I would try to not ask for much from my family and friends.
As I got older, things got really stressful. I became really upset because I never got any attention. Being shy didn't help. All the people who smoked weed and drank had a group, and they all talked about the fun, yet stupid, things they did during the weekends and on vacation. So I was interested. I thought it would be a way for people to notice me. At this time, I was living with a family member, and she was throwing me my first big birthday party. She got drunk and went out to party after we had cake. She had bought a lot of alcohol. So I had all these people over and got a little excited. I started to drink and offered some to the guests at my house. I got trashed. I know I loved the attention from the guys at my house, and because I never really had my dad, it just gave me a feeling like a Band-Aid over my broken heart. Then, one person would tell another that my house was the place to be. My family member worked graveyard shift, which worked out great for me because that meant everyone could party with me.
So a few months passed, and I really
liked all this new attention. Soon enough, my guardian knew I was drinking but
did not mind much, as long as I kept myself out of trouble. So since she did
not care, I think that kind of hurt me because I wanted that attention. I
wanted someone to be my parent. So I started depending on guys to get the
attention that I wanted. I would make out with other girls to get them to
notice me. I began having sex after a situation that happened during spring
break. My life started going down the drain. I was becoming what I fought my
whole life not to be-- my parents.
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 specialistís 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 motherís 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.
Hello, my name is Magdalene Law, and I never thought it would be so hard to get HELP!
It started when I was in high school ('01). The doctor ruled out MS and said it was either an unexplained muscle disorder or all in my head (which didn't make sense to me). I had gone from being number 2 on my cross-country team to not even being able to run around the track, all in one day.
The real trouble all started one day in March of 2008. After I had eaten at a Chinese restaurant, I found myself at home in bed rolling around because I had this painful spot in my abdomen that at first felt like it may be a gas bubble, and then eventually turned into sharper pains with nausea. I thought that maybe I had just eaten some bad food. The next morning, I woke up much worse than the night before; the pain was so bad that I couldn't stand up straight. My mom said that I should go to the emergency room, so that is what I did.
When I arrived at St. Mary's emergency room, I of course waited 3 hours hunched over crying. Finally, I was able to go back to be seen. I expressed everything I felt to the doctor. I also explained that I was born with gastroschisis but had not had any problems since I was a little baby, only the occasional scar tissue discomfort. Gastroschisis has left me with a large scar from the bottom of my chest to my lower abdomen. Gastroschisis (gas-tro-ski-sis) is an opening in the abdominal wall through which the internal organs push outside of a baby's body. During fetal development, the abdominal wall fails to close properly, leaving an opening.
The doctor ordered a CT and pumped me with pain meds. After that, he came back and told me it was probably just scar tissue or adhesions. I told him that I had been dealing with scar tissue all of my life and this was not that at all. He sent me home.
The next morning I couldn't bare it anymore. I went to see my primary care, and they sent me to a surgeon right away. The surgeon then hospitalized me, and lo and behold, they found that I had appendicitis from the CT done the night before! It was not found before because my organs are not in the correct spots. I am lucky that my appendix didn't burst, and I went into emergency surgery. After the surgery, they couldn't get the pain under control even though I was on constant pain meds. I was there for 5 days, and on the last day, I had an episode of constant throwing up. At this point, everyone had been called in. I then passed out cold and woke up alarmed to see all these faces looking at me. For the next 2 HOURS I could not speak or move. The only thing I could do was blink, so I communicated using 2 blinks for ďyesĒ and 1 blink for ďno.Ē They thought Iíd had a stroke and did an MRI. I eventually gained back my strength and was told they didn't know what it was, maybe a vagal response.
That was March 2008. After that, everything was going okay until June 2008. I started to get slight discomfort after 5 minutes of eating. It eventually got worse, and it was very painful to eat. It also turned into bloating, acid reflux, nausea, and dizziness. I went through several tests at a gastroenterologist. Everything came back normal, and he said that I would have to be seen at University of Michigan or Mayo Clinic. At that point, he said there was nothing he could do for me, and he stopped returning my phone calls while I waited to see a University of Michigan doctor. I am from Ann Arbor, so I went home to see a new gastroenterologist. At this point, all of my tests had come back negative, so I wasn't expecting much. Thankfully, my stomach-emptying test came back positive. After 4 hours, a person's stomach is only supposed to have 10% left of their food, but I had 60% left. THIS WAS GREAT! She said that I had gastro paresis, which is when your stomach spasms instead of digesting your food, and your abdomen tells your brain that you are in pain. At this point, I was in the fall of my senior year at Kendall College of Art and Design and badly wanted to finish school! My gastroenterologist doctor and I decided not to try a drug called Reglan because of my past history, so she suggested going on a drug called domperidone. She said it had worked wonders for several people. I was so happy that I had a doctor who seemed to care and wanted to help. By November 2008, I thought my problem was solved. IT HAD ONLY JUST BEGAN!!!!
I started taking domperidone, and within 2 days I had problems. I was at work hosting, and all of a sudden my legs stopped working and began shaking uncontrollably. I started to have a rash all over my upper body, my vision narrowed, and I was having a hard time breathing. My gastroenterologist told me to go to the emergency room immediately. When I got there, I went into shock in the waiting room, and they sent me back to a bed right away. My legs couldn't stop shaking, and my breathing was getting worse. At that time, my boyfriend arrived and was in confusion as to what was going on because I wasn't able to control anything. While my doctor was talking, I told him that I thought I was going to pass out, and he ignored me. Then, all of a sudden, I was falling toward the ground and went out cold. The doctor caught me. I woke up very lethargic and not able to move or talk, like before. Eventually, I came to. The nurse decided to tell me that he thought I had anxiety and that I should get help!!!!!!!!!!!!! I told him that this was not anxiety, and he only pushed it more! I WAS OUTRAGED! When the doctor came in, he said the same thing. I told him that it was not anxiety that there was something very wrong with me. He didn't believe me but said that since my heart rate was so high I was going to be admitted into the hospital. My mom drove to Grand Rapids and helped me through the next 7 days!
I was admitted to the hospital and, after a day, I was sent to the ICU because my heart rate was up to 180 beats per minute lying down. The staff kept telling me to calm down, and I told them I couldn't. Itís not like I could control this!!!! After a couple days and some beta-blockers and other meds, I was moved to a normal hospital room. Every time I ate, I passed out. I couldn't move and could barely talk for 2 or 3 hours each time. At this time, I was on a liquid-only diet. Meanwhile, I had 8 doctors all come in one day to see me, including my primary care doctor, a 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 8th, 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, ďyes, there has to be something wrong with you.Ē 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 fine. I started the test, and my heart rate went straight up. Then she put in the adrenaline, and everything started to hurt. My body was getting constantly shocked, and my blood pressure went straight up and then straight down; it hurt so badly. I lost my eyesight and kept telling her that I was going to pass out. Then I passed out! I had to lie there for some time before I could get up again. I tested positive for the tilt-table test and the doctor ordered me to wear a 20-day heart monitor. She said that I may have vasovagal syncope, but there are many different kinds of syncope!
My mom and I had been planning a trip for my senior spring break to Greece through school, and no matter what, there was no way I wasn't going!! Greece was hard at times, but I took it easy and was able to enjoy everything with my mom being there! When I got back, I started the monitor and went to school. That day I felt awful and like electricity was going through me. I could feel my heart rate and blood pressure shooting straight up. I asked my friend to walk me to my car because I didn't feel good. Walking down the hall, I hit the wall and passed out. They called the ambulance, and I ended up in the hospital again on March 18, 2009.
For the next couple weeks I would go in and out of consciousness. I had visual disturbances (where I would only see tints of green or yellow or see everything in a 2-D form). I had a 4-week long headache, sweating so bad that my pants were soaked and nothing else, rapid heartbeat, rise and fall of blood pressure, a feeling of electricity going through my body, trouble breathing, swollen hands and feet, and pain in my legs and joints so bad that I couldnít walk. Sometimes I didn't even have the ability to walk. I couldn't sleep. I got really hot spots on my body, but everything around it was cold (and also turned red). I had a kidney infection. I felt shaky. Bright lights and loud sounds hurt, and I got very dizzy and nauseous when I stood up or did anything over normal walking. Two weeks ago, I discovered that I was allergic to the heart monitor I was wearing, so that was making my symptoms worse.
I joined a support group called STARS-US that deals with syncope and researched several illnesses that dealt with vasovagal problems. It was clear that I had many similarities to a disorder called POTS. I was diagnosed with Postural Orthostatic Tachycardia Syndrome in May of 2009. This was great news. Now what?
In between then and now, I've been hospitalized a couple of times for losing my ability to speak and form sentences properly and feeling like I was suffocating. I started new medications that controls my heart rate and blood pressure. My doctor at the University of Michigan, Dr. Good, just tested me for blood amount, and it looks like I don't have enough blood in my system! From what Iíve read, having weekly transfusions could get my POTS under control! One could only hope!
Now, I have awesome doctors at University of Michigan and Grand Rapids Cardiology who care and understand what I have. People who are sick should be resting, and they should not have to waste their energy fighting doctors. It seems like if doctors can't find a simple answer, they give up and tell you that you are crazy! All you can do is fight for what you believe in and never stop until you have answers. Everything happens for a reason; you just have to figure out what that reason is. You are your own advocate. Today is a NEW DAY!