Hello everyone. I hope that this message finds each of you as well as possible.
I have never posted in the epilepsy forum, though I have posted in the chronic pain and anxiety forums in the past. I have definitely been fortunate enough until now to not endure seizures.
I want to ask if you any of you can provide me with advice and/or support concerning my current situation, as I feel overwhelmed by it.
During the last week of August, my menstrual cycle began, which is always extremely difficult for me because I have severe endometriosis. I had my prescription for tramadol refilled, and I will never in my life forget eating Spaghettios with meatballs on my bed while watching TV. After I ate a few bites, I took my ibuprofen and tramadol dose, both of which I have been taking for at least 15 years. (I am also given a small script for Lortab, but due to several severe dental abscesses, I had to use the Lortab for the dental issues because tramadol wasn't touching the pain.) I continued eating, and about ten minutes later, I remember feeling very weird and seeing the meatballs in my bowl swimming around. I wondered to myself, "Why are they moving around?" Then I have zero memory. The next thing I know, like it was one second later, there were some unknown guys with dark hair and blue uniforms standing in front of me, talking to me. It was like they were talking in a foreign language, as I could not understand a word they said. I then glanced at my Mom, with whom I live, and I could not understand her either. Everyone looked like they were standing in a cloud. The next thing I remember, four guys were leading me down the stairs, with one guy holding both of my hands while two more stood behind me as we moved slowly down the steps. Soon, I was in the ambulance, and I tried to talk. Yet only mumbling came out.
When I got to the hospital, a nurse told me that my Mom said I had two long grand mal seizures with choking sounds. (Are choking sounds common?) Finally, I was more with it and asked when I could go home. The nurses had a very hard time getting an IV, but because I have had so many IVs from bad asthma, it took forever. Finally a nurse got it near my shoulder. The doctor ordered a urine test, and I remember a technician helping me out of the bed to the bedside commode. Then my memory goes blank, and the next thing I remember, a nurse had a suction tube in my mouth. A doctor was beside my bed and asked me a question I did not understand, and I wanted to say, "I do not understand you." Yet all that came out was a monotone groan. I remember him saying, "She's post-ictal" and ordering medicine, but I remember nothing else. I woke up a few hours later in a trauma bay.
I got admitted to the neuro ICU. On that first day, they did a 5 minute EEG, a CT scan, and a MRI scan of my brain. I stayed another night and was finally discharged. The doctors said that the seizures could have been from the tramadol, but also, they could have had nothing to do with tramadol. They told me to come back if any other problems happened.
I thought this drama was finally over. I was SO glad to see my dog (a spoiled Cavalier King Charles Spaniel) when I got home that I cried forever.
Only 4 days later, I was walking my dog around 4pm, and the strangest thing happened. I was walking on my neighborhood street when very suddenly I felt odd and started running directly into parked cars. I would back up, continue on my way, and then run into another parked car. I must have run into at least six parked cars with my dog looking at me with a very concerned gaze. Suddenly, I lost the ability to stand, and my legs turned to jelly. I fell to the ground and could not get up. I crawled slowly over to the grass and tried to stand again, but like before, I fell. I dropped my dog's leash and remember reaching to grab it. But I then lose memory. The next thing I know, it is pitch black and about four hours later. My dog was sitting on top of me. A very nice man walked by me and asked if I was okay. When I was struggling to get up, he helped me up, and he asked if I had consumed too much wine that night. I shook my head, "NO!" and instead mumbled, "Been having seizures." I looked around the neighborhood, but I had no recognition of it even though I live in that neighborhood. The nice man held onto me and my dog, and he walked me home. When my Mom asked where I had been, I truly thought that I had been overly tired and sleepy and fallen asleep in someone's yard. It wasn't until later that someone suggested it was most likely a seizure. What's odd is that I had taken NO medication - definitely no tramadol, ibuprofen, or any other med.
The next morning, I felt better but very sore. I decided to take a hot bath to ease the soreness. Oh my gosh, that hot water felt good!! The next thing I remember, my Mom was pulling my head out of the water while screaming at me, "You just had a seizure and went underwater. What were you thinking taking a bath?" The reality was that I thought the seizures were over. I had no idea that another seizure could happen. But I am certainly glad my Mom heard the seizure and came to my rescue. Otherwise, I fully realize that I would have drowned, and that scares me beyond belief. I have not taken a bath since that incident.
After I got out of the tub, I was unsteady and sleepy for a while, but after taking a long nap, I felt okay again. But, as my mother put it, I "was definitely not right."
I definitely want to ask if any of you have experienced this next problem I experienced. After getting dressed, I remember going to my computer and seeing an email from my old professor from college asking me to meet him for lunch at Cracker Barrel the next day. I replied that I'd love to see him. I then remember my other Cavalier King Charles Spaniel barking for his favorite bones but realizing he was out. So I went online and ordered him some more of his favorite bones. And then I looked up at a sticky note above my computer and remembered that my family doctor told me that she needed an updated letter from my old pain doctor reflecting the correct date. Also, she said that she wanted the letter addressed directly to her rather than "To Whom It May Concern." I then had a vivid recollection of this pain doctor distinctively telling me during a visit to give the letter to my future doctors that inquired about my pain control. I distinctively remembered that this doctor told me that she had my complete permission to change the date on the letter and to write in the name of my future doctor but absolutely make no other changes. So, because I was already on the computer, I went to her document and made the changes that I remembered being dictated by my pain doctor. I printed the letter out and later took it to my family doctor. The whole time, I was just looking forward to seeing my past professor that had become my mentor.
That night, I slept an extremely long time. I woke up to my cell phone ringing, and it was my family doctor. This doctor was fuming mad, claiming I had "committed a very serious offense" and made the changes to the letter originally written by the pain doctor. I responded that I had been told to make the changes by my pain doctor, but according to my family doctor, she had contacted this previous doctor and had been informed that my claim was not true. My family doctor then informed me that she would never prescribe any controlled or pain medication for me again, and when she hung up, I was initially very confused. I went to my computer, and as I pulled up various emails and documents, I realized that I had been hallucinating and delusional after that seizure in the neighbor's yard and the bathtub seizure. What really made me come to that realization that I had been hallucinating was the fact that my old professor - the one that wanted to meet me at Cracker Barrel - had died in a big commercial airline crash several years ago. Also, the dog for which I had ordered the bones had died a year ago. At that time, I was very confused as to what was wrong with me and why on earth I had been hallucinating. It absolutely crushed me that I had made the date and name change to that letter because I would never in a zillion years do that in my right mind. I still cry over that.
Just to double check, I emailed my old pain doctor and asked if she had told me to make only minor date and name changes. The answer was "No." At that point, my world seemed to crash. I have always been a very honest person, and it bothered me to the core that my brain had been playing such mean games on me.
Online, I have read that seizures have caused hallucinations, either before, during, or after seizures. Is that true? Has this ever happened to any of you?
Thankfully, no hallucinations or delusions have happened since that day, and I pray that they stay FAR away!!
I had yet another long grand mal seizure last week at my counselor's office that resulted in the ambulance being called because the seizure lasted over five minutes. After I finally came around, I refused to go to the hospital because of a totally unrelated incident that happened after I was admitted for the seizures. (In that second ER incident, they treated me extremely poorly and hurt me deeply with their words and actions. That is another long story.)
Tomorrow morning, I see the neurologist, and I really do not know what to tell or ask her. Any suggestions? Obviously, I have never been to a doctor for seizures.
Given the fact that I continued to have seizures after the tramadol was stopped, does this necessarily mean that I have developed epilepsy? Or does it just mean my brain's seizure threshold is much lower, causing more seizures until it heals?
Gosh, I am SO sorry for this long post!! I have felt so alone in this seizure issue, so it was therapeutic to write about it to all of you. But I hope that I did not cause your eyes to get overly tired!
Just because I asked several questions separated by many facts, I will re-write the questions below. Please know in advance that I'd really appreciate any feedback, advice, or support.
1) Do you know if choking sounds are common during grand mal seizures?
2) Can hallucinations or delusions happen as a result of seizures?? Has this ever happened to you?
3) Do you have any suggestions on what I should ask the neurologist when I see her tomorrow?
4) Because I have continued to have frequent seizures after the hospital admission, does this necessarily mean that I have epilepsy? Or could it just mean that it is taking a while for my brain to recover?
Thank you SO much for reading this post, and I greatly apologize for its length. If you can respond, please know I will greatly appreciate it. In all of my life, I have never felt so alone concerning a medical issue.
I wish my very best to all of you.
With gratitude and affection,