My CVS Story

My CVS Story

A Narrative Description of My Course of Illness and Episode Specifics

***This is a long story. Eight years, and still in the making. Pull up a chair and learn about my journey….***

CVS has been determined to have potential genetic roots. However, it is a complicated disorder with multiple factors, and can be very confusing. I have the “red flags” in my family history that link me with the mitochondrial disorder that is believed to cause CVS in many cases. However, I haven’t had the symptoms my whole life. My first episodes happened at around age 25, during one of the most stressful times in my life. So, what happened between birth and age 25 that caused my CVS to finally manifest itself? I might never know for sure, but based on 8 years of research, I can try to paint you a picture.

Let me begin by telling you where I think it all started….

Anxiety. I have experienced terrible anxiety and emotional dysregulation for my entire life as I can remember. But, when I was young I did not recognize these things for what they were, and I didn’t realize the degree to which I was suffering with it. I thought these daily anxieties were weakness and I needed to overcome them. I have always been very good at hiding my anxiety, and people who knew me would probably not recognize how severe it was, and still is, at all. I didn’t recognize it myself. Not realizing the consequences of my actions, I attempted to be strong and never dealt properly with the turmoil inside of my mind. I shoved it all down deep inside and kept it there. I believe this caused the anxiety to build over my life until it reached a boiling over point. I feel strongly that the boiling over point is connected with the onset of my CVS at age 25. I was approaching my clinical year in veterinarian school, and had the most stress, expectations, and anxiety (still not recognized by me) that I have ever had in my life. I had also just spent the last 6 years of my life eating a terrible “college diet” consisting of processed, preservative and sugar-filled food, lacking any fresh vegetables or fruits, and laced with way too much alcohol. (Yes, my parents taught me better.)

Here is my story, to the best of my ability to merge my documentation with my memories…

My years growing up and in high school were spent feeling that I didn’t really fit in, and I wasn’t comfortable with myself. So I wore a mask and changed my personality to please the different people with whom I interacted. My relationship with my parents was very often volatile, as is often the case with teenagers. My strong will, independence, and desire to experience life at a young age did not meet well with their conservative views. My earliest passions were animals and music, but I was a desperate “people-pleaser” and wanted to prove myself to the world. My most burning desire was to leave home for college to become a veterinarian and meet new people with whom I might have more in common. This setting prefaces all the anxiety that would grow into a monster in my adult years.

I moved away to college, and during those 6 years away from home I gradually began to “find myself”. This process has been constant and ever evolving for me. I did a lot of binge drinking in college because I found that I could relax and feel happy being myself if I killed the anxiety with alcohol. However, the only vomiting I had done up to this point in my life was due to excessive alcohol or minor stomach viruses. Nothing out of the ordinary and similar to other people I knew.

I then was then accepted to and began veterinarian school and continued to learn about myself while becoming educated about medicine in animals. I began to mature and become more and more comfortable with the true person I knew myself to be. But I still had massive and ever-growing anxiety about the upcoming responsibilities and adventures of a new veterinarian. I had my first episodes at age 25 during my clinical year of vet school. I was less than 2 years away from being “turned loose” and would be responsible for the medicine that I would soon practice. I was utterly terrified of making mistakes. It was a constant fear that consumed me, and my self-esteem/confidence suffered greatly due to this. This fear prevented me from pursuing my passion with full force. It held me back from throwing myself into my career the way I had always planned to. I became consumed with anxiety on a constant basis, and I began having episodes. Although I didn’t associate the episodes with the anxiety at that time, I still was very afraid of the anxiety I was experiencing at school and work. I began to have a great desire to avoid the things that caused me the most stress. Eventually, I did begin to suspect that the anxiety and episodes were related. That made my fear of the stressful environment in which I worked much greater.

(I have since then been diagnosed with a form of social anxiety known as performance anxiety. This anxiety was severe and interfered with my ability to perform my duties, as well as destroyed my self-confidence in my work environment.)

Something that happened about the time the episodes started was that my periods suddenly changed and began to be much heavier and associated with symptoms of Pre Menstrual Dysphoric Syndrome (my emotional symptoms are very severe, and interfere with my ability to live my life normally – think: severe emotional breakdowns on a repetitive basis). Previously up to this point in my life, my menstrual cycles were generally light and I didn’t have many symptoms of PMS to speak of. My gynecologist then suggested that I could have had a hormonal change that would explain the difference in my monthly cycles. At the time, I didn’t connect this with CVS in any way, as I had still never heard of the disorder.

In the beginning, my new “episodes” were flippantly tossed away in my mind as bouts of “the flu”. I made several trips to the ER next to my college campus, where I was repeatedly told I had a stomach virus and then turned away. Occasionally, I was given fluids and sent home still vomiting. I was prescribed anti-emetic pills that never stayed down long enough to have the chance to work. The hospital didn’t listen when I told them the vomiting would not subside long enough for the medications to work. They didn’t hear me when I said this is happening to me too often to be a virus. They didn’t listen when I said that the intensity was unmatched by any flu I’d ever had. They repeatedly said, “It’s just the FLU!”, and dismissed me.

I began to note that these “viruses” were happening very consistently, once a month. They weren’t necessarily associated with my menstruation, but still happening within each month. The medical staff at ERs never asked any questions or dug any deeper, despite my voiced concern for the regular pattern of my episodes. Additionally, there were times when the ER staff seem to blatantly accuse me of being in drug withdrawal. Once I urinated in a cup to prove to them I wasn’t. And got a billing statement for my negative result. it was expensive, and I refused to prove anything to them after that. I began to lose faith in the ER, and would refuse to go at the onset of my episodes, because it only added to my discomfort and fear of what was happening to me, and the lack of control I had over it. Nothing they ever did for me in the ER helped me, yet I got a huge bill for every visit. I became extremely anxious at the idea of going to the ER at all.

Up until this point, my episodes had been inconsistent and would sometimes skip a month, but for the most part, I noticed a monthly pattern, and my average duration per episode was 3-5 days. At first I was very eager to go to the ER at the onset of episodes because the intensity was unrivaled by any other sickness I had ever known, and I was literally afraid for my life at times. But my negative experience in the ER was becoming consistent. T them, I was either a drug seeker, or it was just a virus and would pass. It became a very bad habit for me to “ride the episode out” at home for the duration (3-5 days). Friends and family would practically beg me to let them take me to the ER, but I would refuse, saying that the ER wouldn’t do anything to help me. I knew that my discomfort would be even more while I was there. During my time living in my college town after onset of the episodes, I was never once admitted by to the hospital through the ER for dehydration or electrolyte imbalance.

Alas, it became common for me to go through these episodes alone at home. I was a college student living alone then. I had friends that could check on me, but I’ve always been very stubborn, and I would rarely ask for help. If I did, I would only let them help get me comfortable, and then send them on their way because I didn’t want them to have to see and hear the things that were happening to my body. I don’t like for others to see me in a state of weakness. Vanity. What can I say?

I failed to make any records of these early episodes, not realizing the importance of that then. I wonder now if I was even checked for dehydration or electrolyte imbalance during the early episodes while I was at the ER, but I don’t have much medical documentation saved from that time in my life. I can tell you that during later episodes, I have been admitted for the above mentioned things after I have vomited for much less time than I did in the early episodes when the ER sent me away after some fluids were administered. In fact, during later episodes, I have become so potassium depleted that the ER staff told me that I could have a heart attack at any moment and they must administer potassium to me intravenously to bring my levels back up. Let me tell you, that scared me. Potassium has to be administered extremely slowly or it can be deadly. Just as deadly as when you have to little.  It terrifies me to think about this, but I do believe that I was sent home with life-threatening conditions during my early episodes, when ER staff failed to dig deeper than “just a virus”.

If you’d like clarification on what an actual episode is like, click here.

During the earlier episodes, it was not uncommon for me to lie in a semi-conscious state for days upon days, alone at my home. Not one morsel of food would pass my lips, nor would a drop of liquid stay inside me. It would last for 3-5 days on average. My sleep was as good as non-existent during those days. A very light doze for 15 minutes, at most, was a little slice of heaven that would occur as infrequently as every 3-4 hours. It was like this for the entire 3-5 days. The dehydration and potassium depletion were at their worst levels. I do realize now how dangerous it was for me to be home alone in this state, but you have to understand that while in throws of the episode, there is nothing that can motivate me to choose to move around and risk increasing the nausea and making me more miserable. I just want to be still because I know it will never stop if I can’t be still and sleep. I was especially unmotivated to go to the ER based on past treatment, knowing that what they had done for me repeatedly in the past had not worked at all, which always results in a period of higher discomfort relative to suffering at home. At least if I was at home I was free to wallow around on my bed, throwing covers and clothes on and off constantly and repeatedly. They frown on that at the ER.

However, these episodes weren’t getting better, they were getting much worse. I didn’t understand why it was continuing to happen to me, and I was desperate for answers. I was in such misery that I began to give in to others requests for me to go to the ER due to a fear of dying, and instead of treating me and discharging me, they began to admit me to the hospital for several days due to dehydration and hypokalemia on multiple occasions.

After many months of this pattern occurring, while still living in my college town, I finally got an appointment, through an attending physician during one of my hospital stays, to a gastroenterologist. I had to beg the ER doc for this. I guess he eventually got tired of me asking and gave me the referral. The gastroenterologist suspected an issue with my gall bladder, and ordered an ultrasound. At the time of the scan, I asked the radiology technician to tell me if she saw anything at all. She told me I would have to wait to hear officially from the radiologist, but that she didn’t appreciate any abnormalities at all. When I went back a few days later for the follow-up with the gastroenterologist, I remembered that the technician had not noted abnormalities, so I asked him what test we would do now that we know the gall bladder is ok. He stated that the gallbladder was not, in fact, ok, and that he saw sludge inside of it on my ultrasound scan. Desperate to find a reason for my episodes, I took him readily at his word and gladly signed up to let him cut me open and take my gall bladder out, in desperate hopes that it would be the end of the vomiting. I remember vomiting right up until the moments before surgery. I remember them telling me how much better I would feel once they had taken the gall bladder out of me. The surgery was uneventful. I woke up and felt relief and was not feeling nausea or vomiting any more. Initially this encouraged me. The immediate response gave me hope. However, only minutes after the surgery was finished, the gastroenterologist told my parents that my gall bladder looked perfectly fine, and he did not see the sludge that he reported seeing on the ultrasound. He did not seem surprised in the least when he told them this, as if he suspected it all along. I was confused. In about a week I received the pathology report on my gall bladder and learned that I had just let them remove my perfectly healthy gall bladder from my body. Then I was furious. Knowing that the knowledgeable ultrasound technician saw nothing on the scan, I fully believe that the gastroenterologist “imagined” the sludge he saw, so that he could tick off one more gall bladder removal on his surgery counter. But I wasn’t sure yet.

The next month was riddled with anxiety over whether I would have another episode since my gall bladder was healthy. The time came, and I then commenced to have another episode as if I had never had surgery. I was devastated that my surgery was for nothing. I missed a clinical rotation during my senior year of vet school due to this, and therefore lost an elective rotation. I had to recover for nearly a week. And I had diarrhea for an entire year. Every time. For an entire year. I have always had occasional diarrhea all my life (anxiety based), but now it was every single time I defecated, for an entire year. After that it got better, but I still to this day have very frequent diarrhea and/or soft stools in general. I cannot digest fatty or greasy foods and they run straight through me. I can safely say I despise him for what he did to me.

I graduated vet school and married my husband in 2007. Because I was still very sick on a frequent basis, I made the decision to begin work for the federal government as a public health veterinarian, and not attempt to be a practicing veterinarian in an animal hospital. The next stage of my life was spent with my new husband, living very far from both of our homes, families, and friends, in Texas. People asked me why, and I told them, “I am too sick to be a good doctor to my patients”.

I feel this was the first major “avoidance” behavior I engaged in due to anxiety associated with my disorder. I was terrified of making mistakes at work, or being too sick to be physically present when an animal needed my attention. I thought I could postpone my career until I was healthy again.

We managed to go on a 2 week-long honeymoon abroad in Europe with my husband without having any episodes. My family felt that going was a risk, but I wouldn’t hear it and went anyway. All I can say is that I got very lucky not to have had an episode there. Especially since the it is now very clear that positive excitement is a consistent trigger for me. The majority of episodes that occurred after I moved to Texas with my husband were triggered by positive excitement. I consistently have episodes when taking trips to visit friends or family. Several holidays have been ruined by episodes.

When we married, we moved halfway across the country for my work, and were located 10 miles above the border of Mexico. We had no family, friends, nor any type of support system near us to lean on when times were rough. Anxiety was still very high. I was happy to be far from the small town I had previously wanted to escape, but we felt isolated in this new place. Due to culture and language barriers it was difficult to find people with whom we could communicate or find things in common. We didn’t have “friends”. My episodes continued here in Texas, just as they had in Alabama. I still attempted to adhere to my 1 hour rule, and I quickly became a “frequent flyer” in the ER. It is not desirable become known as a “frequent flyer” by ER staff, but this is unavoidable for CVS patients.  Frequent flyers are commonly “labeled” as drug or attention seekers and treated very poorly. Additionally, the hospital that we initially chose (closest to us), seemed to have gang activity occurring outside in the parking lot, and gunshot victims were in the ER with me. This freaked my husband and myself out a bit, so we began to use the next hospital down the highway a little farther away. Apparently, switching hospitals will also get you pegged a “seeker”. Not only that, but my anxiety induced behavior in the ER, which consisted of hyperventilation and panic, was being interpreted as “belligerent” by the ER staff, further aiding the theory that I was a drug seeker.

About this drug seeker business… It’s not fair. I have never once asked for pain medications when I present to the ER, only drugs to stop the nausea. Even if I have pain, which is rare, I consider it mild and the nausea trumps it easily. But apparently, asking for any specific drug at all will get you pegged as a drug seeker.  Never mind that you have a rare disorder that no one knows how to treat, if you tell them what you need, you are “labeled”. My hyperventilation, panic attacks, sweating, nausea and vomiting were commonly misinterpreted as symptoms of drug withdrawal. (All of which are actual symptoms of drug withdrawal.) I was desperate for relief from the nausea and I would loudly beg or cry for them to “just give me something to stop it”. I become impatient and irritated when they act as if I am exaggerating. I am very loud when I vomit, and sound like a roaring dinosaur. I see the way people look at me, and I know that they also think the sound is exaggerated. People seem greatly annoyed at the noises coming from within my body. This only made me angrier since I knew that I had zero control over any of it. My anger led only built their suspicions of me. The angrier I became, the more they saw me as exhibiting seeking behavior. My ER visits were hit and miss. Sometimes I would get a doctor who would treat me, and other times I had doctors refuse to treat me. Sometimes they would admit me, and sometimes they would kick me out and send me home. I was still undiagnosed, and was just someone who often came in vomiting and begging for drugs to make it stop. Click here to read an article about identifying drug seekers.

During these hospital admissions and ER visits I was treated with various anti-emetics for the vomiting, including Phenergan, Compazine, and Zofran, and many anxiolytics for sedation including Xanax and Ativan. None of these things ever worked, no matter how much they gave me. This also encouraged the “drug seeker” theory among ER staff since they could see that I was not reacting to some very high doses of strong medications. On occasion these drugs would help to decrease the intensity of the nausea and allow me to doze off periodically, but I would always be dozing lightly and would wake again to vomit every 30 minutes to an hour.

After having several episodes and hit or miss ER visits I began seeking a new general physician. I looked in the yellow pages and found a local general practitioner who was also boarded in internal medicine. (We’ll call her Dr. MP to protect her privacy, but if you are in deep south Texas and need a CVS doctor, please contact me privately for the information.) I chose her because I felt that someone who went on to take their boards as a general practitioner must be interested in digging deeper to solve problems. I was absolutely right. I hit the jack pot when I chose her. I made an appointment and saw her for the first time in October of 2007. When I told her my story she said –

“I know what you have. You have Cyclic Vomiting Syndrome. I have had another patient in the past with your same type story, and that is what we diagnosed her with in the end.”

I consider these words to be some of the most important ones that have ever been spoken to me in my entire life. I can only guess about how long it would have taken me to learn about the existence CVS if she had not fast-tracked the process for me.

She told me that to diagnose it officially we would need to rule out everything else under the sun, and that I would have to undergo many tests. None of these tests would confirm CVS, but if they all come back negative, they give me the CVS diagnoses. One after one, all of my tests proved negative. Even when I thought they had tested me for every disease known to humanity, they would find another, and it would be negative too. Finally, she told me I was finished with testing, and I received the official CVS diagnosis, although I don’t know the exact date that she confirmed it, since my medical records show that she presumed my diagnosis to be CVS on my first visit.

I began voraciously reading and learning about CVS on the internet and found the CVSA website. I began reading there and didn’t come up for air for months. The knowledge that I had a true disorder and official diagnosis was empowering. It was also incredibly validating to communicate online with others who suffer with the same disorder, since I had never met another person with CVS. I became a member of the CVSA and was very active on the message boards. I give the message boards all the credit for figuring out what helped me stop the “monthly” pattern I had been in. Dr. MP had prescribed me an multiple medications for nausea and vomiting, none of which helped in an actual episode, and I still needed to go the ER for sedation and fluids. Up to this point, nothing seemed to be decreasing the frequency or intensity of my episodes. But one magical day, I read on the message boards that the adults with CVS were having good luck using Nortriptyline to decrease episode frequency and intensity. I wanted to try it because I hadn’t before, and asked Dr. MP to prescribe it to me. She stated that she wasn’t comfortable prescribing me that medication, due to some serious known side effects related to mental health and personality changes. I basically told her that I didn’t care about the side effects, and I wanted to try it anyway, I knew with every fiber of myself that any side effects I got from the medication were very likely worth it, if it could prevent these episodes. And nothing else we had tried had helped at all. I was foaming at the mouth for the stuff. She still wasn’t comfortable prescribing it, but she compromised and referred me to see Dr. JI, a psychiatrist who was more familiar with using that medication, so that he could prescribe it for me instead. I began seeing Dr. JI regularly, along with his counterpart “Gus”. They prescribed me the nortriptyline happily. In fact, I think I remember him saying in my first visit, “Cyclic Vomiting? Yes, you need nortriptyline.” What a relief! I was ecstatic that I would have the opportunity to try it.

Over the course of the next several months took the nortriptyline. I had to start at a low dose and gradually work up to a larger dose, so I was aware that it might take some time to help me. I began to notice definitely that the most consistent trigger for me was when I would be excited to do something (positive excitement). I consistently had episodes when every time I visited my parents, or in-laws, or friends. It seemed always to happened on holidays, and it even happened on the night when I my husband proposed to me. It happened once when I flew home to visit parents and grandparents. It happened on a road trip to Colorado for skiing. Positive excitement had become a clear nemesis. I began to have anticipatory anxiety about travel and doing the fun things I was looking forward to.

While reading on the CVSA website, I had also learned of Dr. Fleisher’s 2008 Empiric Guidelines for Treatment of Cyclic Vomiting Syndrome. These outline a treatment protocol for the ER staff. I began to take them to the ER with me and ask to be treated following that protocol. Sometimes they did, sometimes they didn’t. I found that it was easier to avoid the “drug seeker” routine if I told them my diagnosis. However, it didn’t always work. A lot of docs had never heard of CVS and still dismissed me as a seeker. But not all did, and after the first doctor agreed to treat me with Dr. Fleisher’s protocol, I learned that Thorazine and Benadryl, given to me via IV administration would put me completely to sleep, allow me to sleep for about 3 hours, and reset my brain to stop the episode. This substance had just become more valuable than all the riches in the world to me. After the 3 hours of sleep, I wake up and feel miraculously normal again, except for the exhaustion that will linger for days. But there is a catch. This is dangerous stuff. This is hardcore. This is what they shoot escaped mental patients up with, and is the only way to bring people down off of amphetamines. I’ve had doctors who were scared to give it to me, and who refused. I’ve had some accuse me to my face of being a drug seeker just for asking for it. Some others have decided put it in the fluids drip bag for slow administration, because they were scared to give it, and it doesn’t work at all that way. I don’t even feel the effects of it when they do it like that. Some have refused to give the dose recommended in the guidelines and would only give it in a smaller dose. This only results in mild relaxation and sedation, during which I might get very slight relief from the nausea if I can remain perfectly still, and don’t have to think or speak. I become semi-conscious, and indulge the conscious coma again. This fools the nurses into thinking I am asleep and the lower dose actually did the job of sedating me. Nope. I’m just lucky if I don’t vomit for long enough to fool you into thinking I’m asleep. It never fails that a nurse will enter my room while I am “mildly” sedated and make a comment to my husband about how I have finally gone to sleep and the lower dose must have worked after all. I know it will cost me dearly in the form of nausea and vomiting, but I still cannot help myself from responding each time this happens, letting them know that the lower dose did NOT in fact work, that I am still awake and am still overcome by crippling nausea. And then I will vomit in front of them before I can even finish saying all that. That’s when they become amazed that so much Thorazine won’t knock me out, and they start looking at me with “is she a drug-seeker” eyes again.

In the end, knowing how to stop the episode was incredibly valuable to me, even if the docs refused to give me the proper medication. Just having enough control over the issue to know that I can stop these episodes, rather than being forced to suffer through them indefinitely, all but eliminated my growing fear of my disorder. Before I found my magic cocktail, I had panic attacks during episodes wondering how long the episode would last. I found that I could deal with the reality of having such a terrible disorder easier if I had the control needed to stop the episode when it became bad enough to require hospitalization, or just so bad that I couldn’t tolerate it anymore. Just within a few months time I learned how to stop episodes in the ER, and found the medication that would be my valued preventive medication. Things were really rolling along and I had a lot of relief from my fears and worries.

After beginning the nortriptyline I didn’t have another true episode that required the ER for nearly 3 years. I had a few occurrences of dyspepsic nausea (nausea and vomiting once or twice after eating, then return to normal) and a few mild episodes lasting about a day in length, but none of them matched the intensity or duration that they had previously. For many years now I have attributed the lessening in frequency and intensity to the taking of the nortriptyline since the timeline of the two things coincided nicely. However, I would find out several years later, there was another correlation between my medications and my episodes. After I began to organize a timeline of events, medications, episodes, etc… (prior to my attendance to the CVSA Conference in 2014 in Milwaukee, in preparation for a ten minute “speed date” with Dr. Thangham Venkatesen), I made a very profound discovery: I began using hormonal birth control in the form of the Nuva Ring when my episodes began, and discontinued using it when my episodes improved drastically. This pattern was repeated a few years later when I used the Nuva Ring again and my episodes flared up again. This is one of my most important discoveries so far in my CVS journey! But I didn’t put two and two together until I tried to use the Nuva Ring for the second time in my life, and created my historical timeline, many years later. More on this later…

After I began to be seen by Dr. JI, I only saw Dr. MP for infrequent checkups of a various nature. He became my “CVS doctor”. He also began to treat my anxiety. He believed that it would be necessary to keep anxiety under control to also keep the episodes under control. I saw him, or Gus, regularly for follow ups. At my worst, I was severely agoraphobic and was afraid to leave the house or drive. Once I stayed home from work for a week because I couldn’t bring myself to do either without panic and despair overwhelming me. I woke up every morning and immediately began hyperventilating and crying with my very first conscious breath. Every single moment was torture through fear of the unknown. I had read online about my symptoms, and asked Dr. JI if he thought I could be bipolar, based on my frequent, reactive, extreme mood swings. I have always been emotional and very reactive my whole life, but I felt that the two ends of that spectrum, during that time in my life were very extreme, even for me, based on my memories of my early anxiety. Dr. JI presented me with a questionnaire, and after answering the questions I was given the diagnosis immediately. (I think I answered 7 or 8 out of 10 in the affirmative way.) I didn’t ask questions, I just accepted it blindly. (I know better now.) I was prescribed various medications, including SSRIs, multiple anxiolytics, atypical antipsychotics. They made me feel weird, and I never felt that they was doing anything more than taking a tiny edge off the anxiety. When I repeatedly reported that my anxiety levels and mood swings weren’t diminishing, I was repeatedly prescribed higher doses of the same medications. Benzodiazepines entered the picture when nothing else helped. I was initially prescribed Xanax, and I didn’t feel much difference in anxiety levels from day-to-day. So, they switched me to Klonopin wafers. These seemed to help more, but only if I took 2 at a time. They continually increased my dose. Eventually I became tolerant to 2 Klonopins, and could feel no calming effect from them at all. That’s when I knew I was headed downward in a spiral of tolerance and dependence, and I decided to stop taking benzodiazepines altogether. I am certain that my tolerance would have only continued to increase, causing more dose increases, until nothing helped at all, or I became someone who abused their prescription medications. I didn’t want that to happen and I knew better than to start taking more medication than I was prescribed. I was really anxious to stop taking the benzodiazepines, and I tapered off them faster than would have been recommended by my physician. I had excessive withdrawal symptoms, but I stubbornly stayed the course, and eventually my withdrawal symptoms subsided. I have since been managing my anxiety naturally. This is a decision I will never regret.

While living in Texas I was also referred by Dr. MP to see an endocrinologist. I had just previously undergone a follow-up MRI after my first “rule out” diagnostic tests. One radiologist thought  my pituitary gland could be slightly enlarged. This caused everyone a lot of initial worry, but it didn’t make sense. If my pituitary was truly causing a problem due to enlargement, it would also be secreting excessive hormones that would have shown up on a blood test. Every blood test I ever had was normal. So I got the referral to an endocrinologist to dig deeper for the answer. Dr. MT performed many blood tests which proved that my potentially “enlarged” pituitary gland was not secreting excessive hormones, and was not a cause of my vomiting, even if it was truly enlarged. In the years following, I had several repeat MRIs to check the pituitary gland, but every assessment since the first has indicated that my pituitary was never enlarged, and was only “prominent” which is common in my age. This makes perfect sense along with the negative blood tests. I believe that the first MRI might have been interpreted “overzealously” by the radiologist, in effort to come up with an answer to my vomiting when no one else could. It was a zebra, we chased it, and now we are finished.

Another thing I noticed was that I would often get very light-headed, disoriented, and would nearly pass out each time I changed from a sitting or lying position to standing. I had experienced the phenomenon occasionally throughout my life from getting up too quickly, but this was different. It was happening nearly every time I stood. The endocrinologist evaluated me for this symptom. He performed an “Ansar” test (Autonomic Nervous System Testing) on me and diagnosed me with chronic low blood pressure and orthostatic intolerance due to dysautonomia, which is generalized autonomic nervous system dysfunction. I had never heard of dysautonomia and didn’t realize it was potentially related to CVS in any way. He didn’t discuss it much with me, he just prescribed me Fludrocortisone to increase my blood pressure, which I have taken since then.  He also diagnosed me with peripheral vascular disease at the same time. But I didn’t realize this either, since we didn’t discuss it and I didn’t have symptoms of that particular diagnosis at the time. Recently I have begun to have symptoms of this also. I have very noticeable swelling below the lowest point of my calves nearly 100% of the time. My grandmother had this same vascular disease and was unable to use her legs at all for the last 20 years of her life. She was a very active person during her younger years, so it is likely the problem was mostly genetic. I am concerned about already showing symptoms of this at age 33. I worry about the progression of my dysautonomia and the role it will play in causing the circulation in my legs to decrease over time.There is no way to cure it or repair damage already done. You can only try to prevent further damage and worsening of the phenomenon. So, I started wearing compression socks nearly all the time and elevating my feet periodically, and it does help if I am consistent with it. My legs get tired and achy very quickly when I use them, but that’s getting better with time and exercise. A regular exercise routine will also help to improve this condition.

I enjoyed a life without regular episodes for more than a year’s time due to acquiring the knowledge of my disorder and how to treat myself. I was still sick on occasion, but I was becoming more confident about my ability to live normal life, and I wanted to attempt to practice veterinarian medicine in a traditional practice setting, they way I had always intended. We decided to move back to my home town and I began working full-time as an associate veterinarian at the same animal clinic where I worked for four years during high school.

The arrangement seemed ideal at first, but was not. I was working with people whom I had worked under nearly 10 years before, as a high school student. Despite my having “grown up”, they still thought of me as the crazy high school kid they had known years before, and I was not treated with the respect a new veterinarian should receive from subordinates, regardless how well they knew me. They took advantage of my people-pleasing personality and made me feel uncomfortable on a regular basis. My fresh ideas for practicing sound, progressive medicine were tossed aside and laughed at, in favor of more traditional, yet outdated methods. I felt I wasn’t allowed to practice my own medicine and was just supposed to do what they said. I was not allowed to do surgery because I was nervous, my hands shook, and I took too long. Additionally, I felt my performance anxiety building once again. I was still terrified of making mistakes, and my co-workers’ very obvious lack of faith in me made that even worse. I knew I was “green” and wanted to feel free to ask questions when necessary, but I also wanted to be taken seriously when was certain of something. That didn’t happen. I was expected to do what I was told. My anxiety was getting more out of control than it had been in a very long time, and I was getting close to the boiling point. Things escalated until there were several altercations with the staff. I went home most days in tears and would cry about it to my husband at night. I began to dread mornings before going to work. I began to have nausea every morning upon waking up, along with a panic attack that began immediately. These “spells” never reached the intensity of my earlier episodes, but daily was a much more frequent occurrence than had occurred preciously, and affected my ability to work on a consistent basis. I was sick so often I became unreliable. I felt trapped and didn’t know what to do about it.

One weekend during this time period, my 3 best girlfriends from vet school and I planned a long weekend in Atlanta. I made it to Atlanta, arrived in the hotel, and worked hard to get fixed up the way we girls do. Just before we were ready to leave, I suddenly felt the nausea hit, and began having a full-blown vomiting episode before we even left the hotel. None of my abortive medications stayed down or helped. My friends had to ditch their evening out on the town and spend the night in the ER with me. It was my first full-blown episode since nortriptyline was prescribed and my episodes improved. I was terrified of what it meant. Why was I having full-blown episodes again? I knew in my gut it was the constant stress I had experienced at work.

At work, nausea was present nearly all day in a mild form. I began to realize that my anxiety was really beginning to affect me in a negative way again. It became worse with each passing day. Not only did I have anxiety about my job, but I also now had anxiety about my body again and feared that I would transition back to having full-blown episodes again. Then one fateful day, the level of my anxiety became so intense, that I quit my job, There was an altercation with staff that had made me so upset that I went into the bathroom and vomited several times. It stopped quickly, and did not end up being a full-blown episode, but at that point I was certain that the stress of the job was causing my episodes to break through again, and I was not willing to risk that again for any job.

I was devastated that my attempt to practice had not gone as planned. I was determined to try again in different clinic, thinking that if I could find the right place and/or people, I would fit in, and would be able to do my job. I didn’t choose the correct place. The next clinic I worked in made me nearly as stressed as the first. The veterinarian that owned that clinic wanted to make me his clone also. I then attempted to work as a consultant a farmers co-op, but was misled to believe they would be flexible with my absences due to episodes. I was also misled about my specific duties, and was expected to do “busy work” like the high school students. I had never worked in retail in my whole life and had no idea how difficult things could be. I felt like this: “The veterinarian who couldn’t cut it in “real” life, and is now working as a lowly idiot in a co-op, who can’t even stock shelves properly or remember prices and locations of various products.” I began to feel performance anxiety building, and then the daily nausea too. My work absences multiplied due to the related to anxiety and nausea spells. I felt like I had failed, and I knew that I would have to step away from work for a while to try to be healthy again.

I decided to accept the fact that I can not lead the stressful and demanding lifestyle of a veterinarian while I actively suffer from CVS. I quit my job before I became sicker, and I didn’t work anywhere for about 6 months. I felt I needed time to calm my nerves and pull myself together again. I used the time to explore natural medicine. I tried to come to terms with the reality of my situation. I explored spirituality in the form of compassion, love, and a peaceful, non-harming existence. I began to attempt to treat my anxiety naturally. I remembered what happened the last time I took meds for anxiety, and I wasn’t willing to go through that again, or risk an addiction. I began a yoga routine and found it to be incredibly helpful. In fact, once this became a habit, I noticed a more significant drop in my daily anxiety than I ever had while taking prescribed medications for it. Yoga became a “self-prescribed medication” for me, and it has continually improved my health. Not only has it decreased my anxiety baseline, but it has also made my body stronger and more flexible. Great side effects from a medication for a change!

However, new stressors arose related to finances, and after a 6 month sabbatical, I felt I had no choice but to take on work once again. I applied for, was offered, and accepted another position with the USDA, this time as a relief public health veterinarian in 2012. The “relief” part means that the job requires travel anywhere from 50-100% of the time. The advantages to taking this position were: (1) that I already knew the job because it was the same job I did in Texas. (2) I knew the stress levels in this position are relatively non-existent compared to the practicing veterinarian life I had just attempted to lead. (3) Government jobs have great medical and retirement benefits with a lot of job security. They can’t fire me for being out sick all the time if I have a legit medical condition. So I took the job and became a federal employee again, although I was nervous about having episodes while traveling. I trained for the job for nearly 6 months, far away from home, in a hotel, with only a few weekend opportunities to go home on weekends. I was terrified I would have an episode and other trainees would have to take me to the ER, but the training was uneventful in that regard. I suspect that was because the it was an exceptionally stress-free event, other than being away from home. I already knew the job, and I wasn’t over-excited to be in a new city, because I was trapped there without friends or my husband. Thankfully, I did not have any episodes, but my anxiety levels were still higher than I felt they should be. While at training, I met a co-worker that would become a great friend. She is responsible for motivating me to start running. More on running later…

We moved again to be closer to my job, and still live in that place. It’s a lake town that is close to my family and job, but thankfully it is cute, quaint, and progressive. We have a small boat, given to us by a family member, and I really enjoy living in a place where I can go boating often. It is very relaxing and helps me unwind when my anxiety is high. Anything that I can incorporate into my life to help me relax is something I take seriously. So, we take boating very seriously in the summer!

Since then, one of the biggest hurdles I feel that I face daily, besides anxiety, is low energy and exhaustion. I now believe, looking back and making comparisons, that I have had a lower energy level than most others around me at any given time. I was taught to push through weaknesses, so I never considered that I had an energy deficiency before. But the research on CVS in recent years suggests a likely connection with the cellular mitochondria in the cause of CVS. Mitochondrial disease manifests in many ways, but CVS is likely one of them. The more I learn about the symptoms of mitochondrial disease, the more I relate and see the connections in myself. I now realize that I have faced chronic lack of energy my entire life, but it has recently gotten much more noticeable. I have never been able to run as long as others. I became tired playing sports quicker than others my age, even though I had good skills in sports. I did the same practices and PE period exercises, but I never seemed to have the strength or energy that others did during physical activity. I thought I just wasn’t as fast as others or didn’t have the endurance, but now I feel there is a reason for that. One of the treatments for mitochondrial disorder is actually exercise. It helps the mitochondria “learn” to improve its function. So, for the past year of my life, I’ve been running consistently, 2-4 times weekly. I run 3 miles every time I go out, so I get between 6-12 miles under my belt weekly. And while I do improve with each run, I have noticed that do run out of energy earlier than others around me that are in similar physical shape. I feel that the continued exercise will help improve my mitochondrial function. It has already improved my physical shape, strength, and stamina. Running is also one of the most effective forms of anxiety treatment I’ve tried so far. I’m absolutely addicted to it. It’s nice to have a healthy addiction. “I run to burn off the crazy”, is now a favorite slogan of mine. I plan to continue this routine for the rest of my life. I feel better and younger than I have in years as a result of this routine, and I plan to continue doing it for as long as my life and body will allow.

In late 2013, I had another full-blown episode that I believed to be triggered by a combination of positive excitement and dietary factors. However, I had recently begun using the Nuva Ring again. (I hadn’t made this connection yet). After this episode, I continued to have monthly episodes, but they still weren’t as intense, nor did they last as long as the episodes from the early, undiagnosed days. As these months wore on I began to suspect strongly that the Nuva Ring was somehow connected to this and making me feel worse. It was exacerbating my mood disturbances the week before my period, and it began to be so severe that I was truly suffering (and causing my husband to suffer) with bouts of intense mood swings. They became so severe that one day when I was CERTAIN that the Nuva Ring was making things worse, and I took it out. I vowed never to put it back in, or use any form of hormonal birth control ever again. My gynecologist agreed with me. My system goes haywire when they are introduced to my blood. Within days of taking it out I felt like I was returning to my normal self again. I have done better on a daily basis since then, but have still had episodes on a monthly basis, with the exception of skipping a few months here and there. I think I really caused havoc on my system the most recent time I used the Nuva Ring, and that it will take many months to get back to “normal”. I feel improvement with each passing month that I do not have exogenous hormones working on my body..

In June 2014 I attended the Cyclic Vomiting Syndrome Association Annual Conference in Milwaukee, WI. My purpose for attending was to dig deeper and learn more about the research than I ever have in the past, and to connect with real people who also have CVS. I had previously decided to embrace the fact that I have this disorder, and dive as deeply as possible into “the world of CVS”, and I thought this conference would be a great way to start. It wasn’t just great, it was life changing.

While there, I had the opportunity to “speed date” a CVS specialist for 10 minutes. I chose Dr. Thangam Venkatesen, a gastroenterologist at the Froedtert Hospital at the Medical College of Wisconsin, because she specializes in treating adults with CVS. She agreed to take me as a patient and I soon scheduled an appointment with her in 6 months time. To prepare for this appointment I gathered every thing I had documented about my episodes including the dates of all my hospitalizations, episodes, and my perceived triggers. In the end, I created a detailed timeline of events and correlations in the form of a calendar. I organized this into a 3-ringed-binder that I take everywhere with me now. I made a post about it called, “My Pretty Binder for My Ugly Disorder“. I found many other positive correlations including positive excitement, which I already knew about, as well as heat exhaustion, which I hadn’t associated with episodes yet. This was how I identified that the Nuva Ring was my #1 association with my worst episodes. I had so many light bulb moments while putting this timeline together! I realized how important this detailed journaling is to learning about and treating my disorder, and I will continue to do this for the rest of my life with CVS. It gives me a little bit of control in the midst of feeling so uncertain about it all. That helps so much.

The most profound statement I heard the whole weekend was spoken by Dr. Boles. He was speaking to the cause of the disorder and stated that:

“There is not ONE cause of this disorder. It is multi-factorial, and those factors vary among CVS patients.”

That makes so much sense!!! No wonder this is so complicated and hard to figure out! I have to stop trying to pinpoint one thing or the other as the cause of this, and consider the reality that many things are causing it. Yes, I have symptoms of mitochondrial disorder. And yes, I have severe anxiety. Both of these are believed to be connected with CVS. But these are things I’ve had my whole life. So, why did the symptoms of my disorder wait to appear until I was 25 years old? I can only guess, but I can make a very educated guess at this point.

I had what I believe was a fairly well-rounded diet as a child. My parents did a good job feeding me good food and teaching me to eat well. Mom cooked most of our meals and we didn’t “eat out of boxes or cans” much. My dad stressed the importance of vitamins, and I was allowed to drink only milk, juice, or water at meals rather than soft drinks or tea. I was not a picky eater, and I didn’t complain much. I also played sports in high school, and was pretty active otherwise. I believe I was keeping my health “maintained” during that time in my life. But – once I came of the age to work, make my own money, live alone, and make my own decisions – I also began to indulge in sweets and processed food. And I stopped any form of voluntary, regular, physical exercise. I thought the only danger of this was gaining weight, and as long as I had that under control I wasn’t concerned for my health otherwise. My decisions were all based on convenience, and I simply thought I could get away with it. It definitely became excessive in college. The vast majority of the food I consumed was processed, preservative-filled, and sugar-filled. I drank soft drinks and beer as if they were water, and hardly drank any water at all. As the years passed, my bad habits became even more habitual. I continued to deprive my body of the proper nutrients it needed as a working woman and wife after college and up until this most recent year of my life. All for the sake of convenience. How sad. I blame my busy lifestyle, my anxiety, my hatred of taking time out of the day to cook food, and most of all – my eternal stubbornness. I was learning about medicine and physiology in college, and I should have known better, but I thought I was untouchable, as people often do when they are young and trying to find their place in the world. I have to forgive myself for it.

Maybe I’m right, maybe I’m wrong. Maybe I’m only partially right or wrong. But this is what I think caused my symptoms to arise at age 25 rather than earlier in life – and I  feel this to be true deeply and instinctually.

Coincidentally, in Feb or 2014 (before the conference), I had become fed up with my aging body. I was accumulating and storing fat in certain places at a much faster rate than I had previously in life, and it was harder to keep my shape, even though I had been doing a little bit of exercise in the form of yoga. A co-worker who has become a dear friend inspired me to begin a running routine in addition to my yoga routine. Long story short is that I fell in love with it too. Yoga is great, but running is lot of bang for the buck. A ton of calories burned and actual results within a reasonable time frame! (1 month). I was miserable at first, but I was determined, and I pushed through. I’m so glad I did. It’s the best choice I’ve ever made. I’m losing weight and shaping my body in a healthy way. Not to mention that running is an excellent anxiety killer! I feel great relaxation after working my body out the way it was meant to be worked regularly!

Guess what else running does?? It helps your mitochondria to be able to “learn” to function better, as does all exercise! I swear it works! The more I exercise, the more I am able to tolerate exercise, and the less I feel exhausted after I do exercise. Duh! I “knew” this, as do most people! Why did it take me so long to try it and figure it out??

Folks, I’m here to tell you all that natural methods work much better than synthetic ones! Yes, exercise is hard, and yes, taking a pill is much easier. But the difference in the results is huge, and it’s worth every bit of effort and time that I have put into it. How much effort and time do I put in it? I average 6-9 miles per week. When I run, I run 3 miles. Period. No shortcuts. I began with a time of about 45 minutes. Yesterday (11/27/14), I ran a personal record and finished the 3 miles in 36 minutes! I’ve completed 3 5Ks this year, and I plan to complete more next year. I do yoga a couple or three times a week on the days I don’t run. Yoga sessions are 50 minutes. So, less than an hour a day. That’s all. I wanted it, I prioritized, and I made it happen. I hope this inspires you all to do the same.

But, the big, humongous change I have made in my life since the CVSA conference has been my diet. After hours and days of research on mitochondrial disease (and CVS in general), I now know how to “feed” my mitochondria to help them function more efficiently. There are a lot of “diets” out there. I don’t follow any particular one exclusively. I explore them all, find the aspects of each diet that work for me, and blend all that together into a diet that is nutritious and meets my needs to avoid certain foods as well. If I had to name a specific form of diet, I would tell you that in general my diet is similar to “The Paleo Diet“. There are several Paleo food lists out there, but I learned the most about this diet from Mark’s Daily Apple (Great site, check it out!). But I don’t eat near the amount of meat that Paleo is known for, or that Mark endorses either. My beliefs about eating meat are still evolving, but, in general, I eat as little meat as possible and get my protein from other sources. There are many, and it is easy to eat plenty of protein without eating meat in excess. (I do believe that we eat meat in extreme excess in this country, and it sickens me.)

The best way I can describe my new medical diet is to tell you that I focus on eating whole foods, organic when possible. I have almost completely eliminated processed food in boxes or cans, preservative-filled ready-made meals, and sugar-filled foods from my diet. Yes, I have cravings, and yes, I give in to them plenty of the time. What’s important is that my diet now consists mostly of good food with proper nutrients, as opposed to mostly crap like it was in college. I want fresh, whole fruits and veggies to compromise the bulk of what I eat. Snacking on them frequently to kill cravings. Protein sources are beans, eggs, milk, broccoli, kale, spinach, nuts. I supplement with some meat (preferably fish) 2-3 times a week. I drink fruit juice (100% from concentrate with no sugar added) and water. I might never have another soda drink again in my life. (I’m working on a “Diet” page so that I can describe my diet and the reasons for it in much more detail. Stay tuned….)

Another big topic of discussion at the CVSA conference was on the role of supplements to help prevent and decrease intensity of episodes. CoQ10 and L-Carnitine are specifically being researched and have found to be helpful in some patients with CVS due to their important role within the mitochondria to make energy for the body. I had read about them before, but they are expensive since insurance won’t cover them, so I had not attempted to use them yet. After the conference I decided I had to up my game and do everything that could possibly help me. I’m so glad I did, and I wish I had sooner. I can truly tell a difference and I think they are helping my episodes to be less intense. You can read the specifics about, and get the links to order the same medications by reading my post titled “My Supplement Regimen“.

Then, finally in October of 2014, came the day that I had my appointment with Dr. Venkatesen. I flew from Alabama to Chicago, then rode a greyhound bus the rest of the way to Milwaukee (to save money). This appointment was life-changing as well. And the trip was adventurous! (I plan to write about it in detail also, so stay tuned!…) It was my first time talking with a doctor (as a true patient) who knows more about the disorder than me. I have never felt so validated in my entire life. She told me that I am doing all the right things to help myself, and that I am one of the most informed patients she has ever had. I guess my obsession with researching everything about this disorder, pretty much constantly in my spare time, for the past 8 years, has really paid off. That was only 2 months ago!! I am freshly inspired to continue to research and learn every day. There is always new information out there to find and learn!

My story continues each day, and I learn more and more all the time. But this is roughly how it all has gone down. I have learned many little tricks that help. I’ll be making posts on the specific things that I have learned along the journey. I think you’ll find, like I have, that the most important factors in good health are diet and lifestyle. Medicine fascinates me and I love to learn more each day. Please keep in mind along the way that I have researched some aspects of CVS for nearly 8 years now, and it took many years for me to gain some of the perspectives I have now. Some of what I have learned has been through research, and some has been through my own experiences and experimentations. My posts will be my own personal thoughts and I don’t expect everyone to take it as fact. I don’t always take my doctor’s advice, if I strongly disagree. It is important to learn for yourself and make sure that your health is in your own control. I keep an open mind, and I question everything. Especially traditional medicine, these days. And as I continue to improve my health, I am learning that sometimes I’m right. That’s empowering and validating! 🙂

 

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2 thoughts on “My CVS Story

  1. Tayler Miller says:

    I’m not the best with words, but I just wanted to thank you for putting this out there. My name is Tayler and I’m sixteen and have been dealing with CVS since I was six. I’m quite young and haven’t had much experience, and until I found this article I almost thought I was the only one. I’d practically convinced myself this disorder I’ve been dealing with over half my life was just imaginary like most people said. It’s just… reassuring to know I’m not alone.

    Like

  2. Tayler Miller says:

    I’m not the best with words, but I just wanted to thank you for putting this out there. My name is Tayler and I’m sixteen and have been dealing with CVS since I was six. I’m quite young and haven’t had much experience, and until I found this article I almost thought I was the only one. I’d practically convinced myself this disorder I’ve been dealing with over half my life was just imaginary like most people said. It’s just… reassuring to know I’m not alone.

    Like

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