Serene Forest

Wednesday, December 4, 2013

Periodic Paralysis and the ER…The Narrative December 4, 2013

Hello All,

Today I am posting something I wrote awhile back to describe and explain my experiences in the emergency room (ER). It is the second of three articles I will be posting on this subject. Those of us with Periodic Paralysis fear going to the ER and you will understand when you read the following narrative.

                                  Periodic Paralysis and the ER…The Narrative

The following narrative and article is difficult for me to write. Going through my medical records is stressful due to all of the negative things written about me, the misdiagnoses, the unkindness I endured, the opportunities missed by the doctors to treat me appropriately, the horrible reactions to the medication I suffered and the fear I have been left with when I think about returning to the emergency room (ER). I have contemplated how I was going to write this and after much thought, I have decided to tell the experiences in as much detail as I can, so the reader can understand my frustration and fear. By sharing my experiences in this manner, I hope to help others avoid what happened to my husband and me in the ER and hospital. After writing my experiences, I will outline a plan to help others avoid the pitfalls of the emergency room.

I found myself in the emergency room (ER) of my nearest hospital, in a small town in Oregon on four different occasions due to symptoms related to Periodic Paralysis. Three of those times I was taken by ambulance and the last time my husband drove me. Three times I was admitted for further observation. Each time I was released, I had no diagnosis or a misdiagnosis. Each time I was given medications that made me worse. Each time I was mistreated. My hospital records are filled with lies and misleading statements, misinformation and misdiagnosed conditions such as "pseudo" seizures. These have followed me since my first visit to the ER and continued to interfere with getting a diagnosis and proper treatment.  It has been a life-threatening and continuing nightmare that could have been avoided if someone in the ER or the hospital had taken me, my husband and my symptoms seriously in the very beginning. Had this disease been caught earlier, I would not be as ill as I now am. I must presently be on oxygen 24 hours a day and my heart is seriously damaged, electrically.

My first ambulance ride and hospital stay was on September 30, 2008, as the result of heart palpitations (felt like it was beating out of my chest), tachycardia, arrhythmia and chest pain, early one morning. I was sitting at the computer when it began. I took a nitroglycerin tablet but it didn’t help so I took another one. The pain continued so I got up to walk to the bedroom to tell my husband. I could not walk and landed on the floor. I could not move. My husband heard and then came to help. He called 911. They arrived in what felt like a very long time. We lived 10 miles outside of town in the mountains. The paramedics placed me on a stretcher and wheeled me to the ambulance. They hooked me up to an IV and after checking all my vitals, asked me to sign a paper. I found I was unable to hold the pencil. After what seemed like another long period of time, we began the drive to the hospital.

Once at the hospital, I was doing a little better. I was hooked up to all of the necessary machines and equipment and all types of tests were performed. After several hours, the doctor walked in and was about to send me on my way, when suddenly my heart went into tachycardia. He changed his mind and had me admitted. During my stay I was continually on an IV which hurt horribly, but they would not fix it (A few weeks later I got phlebitis in my arm due to the IV and twice ended up in the ER to get an antibiotic for it.), and given several medications including tylenol, ativan, zophran, morphine and ambien. I had severe problems with walking and tremoring. After they gave me the morphine in my IV, I had an immediate reaction of sudden chest pain and palpitations and passed out. After one night and two days they discharged me, with an unknown diagnosis, but the suspicion that I had chest pains due to my acid reflux although the lab work indicated I had some type of event with my heart. I was given reglan, upon my discharge, a medication for the reflux. Once home I was doing better, but when I took the medication after dinner, I went into tardive dyskenesia, it lasted all evening and through the entire night.

What I know now, from the hospital records obtained recently, is that the labs indicated a possible heart attack or ischemia. Cardiac enzymes were elevated and testing ruled out pulmonary embolism. The doctor had me admitted to rule out an ischemic cardiac event. Ischemia is an absolute or relative shortage of the blood supply to an organ. It was not ruled out, but the cardiac event was obviously due to my periodic paralysis that we did not know I had at the time.

Had we known, I should not have been on an IV due to it causing paralysis to people with Periodic Paralysis. I should not have been given the other medications due to the side effects of them and the long QT interval problem. At the time we did not know what was wrong, but the effects at the hospital should have given them clues about what was going on. They were ignored or misinterpreted.

Unfortunately, the hospital recommended a coronary angiogram to be done after I left the hospital but neither my PCP nor cardiologist ever let me know about it. They both left town within a few months after that and it never happened. That could have been a turning point for me and I could have received some help, however, I didn’t know about it and the new doctors did not follow-up.

In July of 2009, my life changed forever.  At that point I had just found a new doctor because my previous doctor had left town for a better position in another state.  The first doctor I went to told me I was too sick and that he would not be my physician.  I left out office crying my eyes out and went straight to the insurance company.  They gave me the name of the doctor who was accepting new patients.  I was able to get an appointment with him for the next morning.  At first he seemed like a caring doctor but was upset with the number of medications I was taking, as was I.  I was on 15 medications at the time.  I was having ataxia, tremors, tachycardia, and palpitations and having trouble speaking.  I told him I was very concerned over all the symptoms and asked if he would help me.  He asked me to stop taking a few medications, which I did, and that I was to return to him future.

However on July 27, 2009, I had what appeared to be a seizure of some type. It was about the fourth time in the past 10 weeks, but by far, the very worst. I was unable to speak, walk or move in any way; I was totally paralyzed. I also had tremors and jerking in my muscles. These contractions throughout my body made it look like seizures. However, I was never unconscious. I knew everything that was happening. As before, I was wheeled to the ambulance and hooked up to an IV. My vitals were checked and one of the paramedics gave me some glucose by mouth. He told me I was hypoglycemic. I was lucky I did not choke on the honey-like substance. My heart rate was over 160 and I was given ativan. We finally left the driveway and headed to the hospital. Within a few minutes, my body was jerking worse, especially my legs and feet. They were beating against the back door of the ambulance.

By the time I got to the hospital, I was worse than when the ambulance arrived at my home. I assumed it was due to the glucose. I do not remember arriving at the hospital or what followed until I woke up while my husband was arguing with the doctors. They told my husband I was having seizures, but that they did not take care of seizures at the hospital and in the ER. They made my husband take me home with 12 tablets of ativan. Records show I did appear “ataxic” and “spastic” during some of my motor exams and the one of the doctors gave his reassurance that, “Sometimes it takes years to make diagnoses, especially when they are difficult and the symptoms presented are so varied, such as in this case”.

For the next two days, I remained in this state.  I was in and out of consciousness. I was getting worse and unable to function. My husband, being concerned, called my new doctor and asked if there was any way I could be admitted to the hospital because he could not feed me or take care of me.  After a few phone calls and my counselor/therapist getting involved, an ambulance arrived and took me back to the hospital. I do not remember much about that trip. I was admitted. The doctor was very angry and treated me horribly and put falsehoods in the records. At this point I could relate all of the lies and distortions, but have decided not to. Since that time, we know that all of the medications I was on and the ones the new doctor gave me and the ones from the hospital including the IVs, caused most of the symptoms. These symptoms combined with episodes of paralysis caused symptoms that they just did not understand. But being told to my face that he was referring me to a psychiatrist and that I was “making it all up” was horrifying and frightening when I was so ill.

I was sent home after a day. I spent the next several weeks in bed unable to do anything for myself. During that time, I found another doctor who put me on new medications without trying to discover what was wrong. The medications made me worse. My husband had to bring his sister in from another state to take care of me. I spent months recuperating and actually never have fully recovered.

At this point we realized we had to find another doctor.  I could not find another M.D., and had to settle on a nurse practitioner.  She was very helpful and was glad to take me as a patient. By now, we begin to realize that the medications were creating terrible symptoms for me.  I got off of them as quickly as I could.  We realized that almost all of the symptoms of ataxia, tremors and problems with my speech had been related to medications. I stopped taking every medication I was on. Most of the ataxia, and tremors, etc stopped. Then, I began to have episodes of total paralysis. During them, I was unable to talk, open my eyes or move. I sometimes had chest pain, tachycardia and palpitations with them. They were frightening and we believed them to be related to my heart.

On the evening of February 19, 2010, I went into a serious episode. I was having trouble breathing during it for the first time. When I could speak, I asked my husband to call an ambulance. They arrived as before and put me on an IV.  At the hospital, I was hooked up to the machines and the testing began anew. It was noted that I spoke in a “slow and low voice with flat affect” (my mouth was paralyzed), and that I had “weakness in my lower extremities”. My oxygen was at 96% saturation and my heart rate was 116 with a blood pressure of 147/58. They did admit me for observation.

Once admitted, I lay in the bed going in and out of paralysis, each one lasting between about 30 minutes to an hour. I know because all I could do was lay there and look at the clock when I was able to open my eyes as each episode eased up. During that time, the nurse looked in occasionally and told me that the doctor would be there soon. It was at least 3 hours from the first time she told me, that a doctor finally came to examine me. He wrote, “Initially, she is conversant but then she goes into an episode of being unresponsive and some mild shaking. It looks in my experience to be a ‘pseudo’ seizure.” He told me that and told me he was going to treat me with ativan. My husband told him not to do it. After he left, it was administered in my IV. Within a few minutes, I was very nauseous. The nurse brought me something for the nausea. I then threw up and the next thing I remember was waking up about 10 hours later in the morning.

I had no idea where I was. I thought they had moved me to another room. I tried to send my husband an email. When he got it he knew something was seriously wrong. I could not write or spell. He came and took me home before they could give me any more medication. He was afraid they would kill me if that were to happen. The hospital records say that I, “responded well to the medication”, that I was being discharged in “stable and significantly better medical condition after taking the ativan” which, “completely relieved my symptomatology suggestive that his diagnosis of ‘psuedo’ seizures was correct”.

This is an out and out lie…the medication knocked me out and when I regained consciousness, I could not talk or walk or do much of anything for myself. I was in and out of the paralysis again. I was able to send an email…with a few words and a phone call to me from my husband confirmed my husband’s worst fears. I was slurring my words and not making any sense to him. He came right away. He had to dress me and lift me into a wheelchair. He took me out of the hospital with no discharge plan. The record states that both my husband and I were “agreeable to the discharge plan”. This “plan” lasted 30 minutes. This is ridiculous because there was no discharge plan.

That is the last time we dared to call an ambulance or go to the hospital no matter how sick I got. There were several times when I should have been there, but we were very afraid of what they would do and how they would treat us. Two times we know now, after obtaining copies of the labs, I was in metabolic acidosis and really needed to be seen in the ER. I nearly died both times.

No one should be too afraid to go to the hospital. No one should be afraid of doctors. No one should have to take their chances of staying home and hoping they will not die because they fear what the doctors will do to them. No one should fear going to the hospital because they will be given medications they should not have. No one should fear going to the hospital because they will be told they are mentally ill. No one should fear going to the hospital because they will be scoffed at. No one should fear going to the hospital because the doctors will not believe him or her. No one should be afraid to go to the hospital for fear the doctors will lie about him or her.

I know of many others who have Periodic Paralysis and are diagnosed and others who are not diagnosed, who have had similar experiences to mine. This is happening all over the world. They, like me, live in fear of ending up in the ER. This is just not acceptable. ER doctors need to be able to recognize and know how to treat Periodic Paralysis correctly. It is my hope that this blog, our website and our book will finally shed some light on this rare syndrome for the doctors of the world.

I am now diagnosed, and still fear going to the ER and to the hospital. However, I have discovered a way to change this. Tomorrow I will write about how to avoid the pitfalls of the emergency room.

 Until later...


  1. thank you Susan for sharing your horrifying experiences with this dreadful disorder.. and it can be even worse.. stories of women being raped by caregivers while vulnerable or literally dumped on the sidewalk and called malingerers while in a paralysis episode.. and for the Doctors and other medical professionals to literally lie to cover their own ineptitude frightens me to no end. No wonder we wont go to the ER,,

  2. Thank you for sharing. I don't think anyone can know what it's like to be helpless until you experience it. To be completely incapable. To lie in a hospital bed being prodded and poked. Needles in, needles out. To loose control over yourself. With paralysis (to Drs and Nurses) you're an awkward one, you're strange. All the while you are helpless. You're frustrated. All of the things that you would normally be doing are left undone, that is perhaps the thing that hurts the most.
    You're left staring at the hospital ceiling wondering if the paralysis will move to your chest, or your heart. A part of you fears it, but another bit of you embraces it, wants it to happen. Because that way there would be no more helplessness, no more prodding and a final conclusion can mean it's all over. You know that no one understands, no one knows. You know that because if you were in charge of someone that was vulnerable and going to be spending hours staring at the ceiling you'd make sure it was painted, you'd probably even put a hopeful looking painting up.
    To know that your body will not always be yours to command is one of the hardest things about periodic paralysis.

  3. Thank you Karen and Anonymous....You both truly understand.....I hope I am helping you in some ways by sharing my experiences and explaining what it is like for those of us with PP...ours is not an easy life.....Yes Anonymous....I have been there...."embracing the inevitable".....