The brief news is that the neurologist, like the many, many specials before him, is dumping me after two visits. I will be brief and bullet point the meeting and the exchanges were often too surreal to believe.
*He wants me to stop all use of diazepam as ordered by the hospital (3 to 4 pills daily). The hospital ordered it to increase the efficacy of my anti-seizure drug, Lyrica due to the double blind study (as well as many others) as published in the Archives of Neurology 2002 and others which show that it helps people have longer periods of times between seizures and less seizure. His quote is, “That is their opinion, but I have mine.”
*He wants me to NOT use Ativan DURING a seizure series, despite that it was a) prescribed by the hospital and b) According to Anticonvulsant therapy for status epilepticus in 2005, it was found in a survey of 11 studies of over 2000 patients to be the most effective for treating severe seizures (tonic-clonic) and severe seizure series. (the second most effective: diazepam)
*The reason for both of these is that they are “addictive.” Seizures apparently are not.
*He believes based on what he has heard that I have pseudo-seizures.
*When I asked him why, when the US epilepsy society has 500 “common” seizures and 2000 rare seizures he has, without tests concluded I have a type of seizure that is lifelong and does not respond to treatment? And how many patients does he tell, on their first visit, without tests, that they have ‘pseudo-seizures?'
*He did not answer either question (though I asked them several times), he is not initiating treatment. He has however had a long talk with my GP about “the type of person I am” (My GP believes because I had a complex partial in his office instead of a “Grand Mal” that I had a ‘pseudo-seizure’).
*He said he believes that it is unlikely that someone my age would develop epilepsy. I said the epilepsy Society of Canada said 40% of people develop seizure disorder in adulthood due to things like PARTIAL STROKES (hand raised) or vascular degeneration in the brain (hand raised).
*He then tested my legs, and found that my ankles had no deep tendon reflexes and one knee is very diminished, one partially diminished deep tendon reflexes. This took 10-15 minutes. I asked him WHY he did that. He said he wasn’t a movement specialist neurologist and just dealt with seizures. (????? We think he was checking to see if I was lying).
*He emphasized again the addictive nature of diazepam and Ativan using the exact same phrases as my GP.
*He said he would take an MRI and by looking at it would determine if I have epilepsy or pseudo-seizures (he is looking for deep scarring, which is what happens during Grand Mals over years, but may not show up over the few months I have had them; much as MS spinal demyelinization doesn’t show up for 6 to 9 months – or even 2 years).
*I asked him how I was to improve my quality of life, which is pretty poor in the four months while I wait for the MRI he wants. He had no comment.
*He also believes that I have pseudo-seizures due to the description of my absence seizures.
However, as we pointed out, I had TIA’s regularly BEFORE having a partial stroke and then later seizures. I still have TIA’s. I also have muscle seizures due to muscle and nerve death due to my disease. My disease also has a component of Parkinson’s (is related to), which causes instances of Parkinson’s Fog. We admitted we did not know which were seizures and which were “Fog” and hoped he would help us.
*Only if he sees what he wants on the MRI will he initiate any treatment at all.
In summary, we are now going to write a letter to have Cool Aide replace our GP since we have heard our GP’s sentences coming out of three specialist’s mouths. He has delayed referral to a pain specialist for months until I came so he could tell me his opinion of me. He has not initiated treatment for ANY of the illnesses found by tests, nor will he even do follow up tests for existing illnesses (like progressive anemia). He has not in the 9 months or so, initiated a single medical treatment, or independent referral and though asked for I currently do not have: a motor neurologist, an endocrinologist, and a respirologist (sic) for starters, even though he has signed a note saying I need a continuous oxygen concentrator.
Then we will have to start entirely from scratch. Only now, I am currently too exhausted and have been since June to make it to GP appointments and Linda as medical power of attorney goes in my stead.
“Pseudo-Seizures” are a point of debate because every year, more actually named seizures are found and taken off the list of the “Pseudo” – it just means that when the seizure is occurring it is not showing on the EEG machine. Or showing a typical seizure activity. However many specialists feel that it is just another form of seizure that is deep in the brain and thus cannot be read by current instruments. However they feel, people with “Pseudo-Seizures” have a pretty bleak future as there is no medication which treats them, most people with epilepsy are accused of having 30% of their seizures fall into this bracket; so no way to stop them, no treatment and you get a “Pseudo” label to boot. It is however easy for a lazy neurology to instead of investigating the various types of seizures a patient has or even asking, to simply label, as this one did it into two group: Epilepsy (2500 types), Epilepsy with Pseudo and/or Pseudo. Since Pseudo is “not my inch” for seizure specialists, that means they get turfed and after their one visit (or maybe a follow up, it is “good luck” and goodbye.
Cheryl has pointed out that not using Ativan at home only means that I will be more likely to have longer and more violent cycles of seizures at which point the EMTS will take me to the hospital at which point I will be given a main line of Ativan. They will also give me a limited prescription and advise me to take them during an “aura” (what you get before a seizure – for me, smell of burning rubber, blue sparkles or “something is wrong”). So a diminished quality of life, and more time in recovery from the hospital (and $86 for ambulance).
The question is, do I believe the ER neurologist who SAW me have a seizure, and who I asked if it was a Pseudo and said NO? Do I believe the EMT and ER senior doctor who saw me have a series of three to four seizures and who I asked directly what it was, and was it “Pseudo” and he said “No, it was Atypical” (meaning a seizure that is not a simple tonic-clonic and recommended Lyrica instead of the traditional drug until the exact seizure was found, along with Ativan and the Diazepam.)? Do I believe Cheryl who has seen several hundred or thousands of people with seizures in her decade plus of EMT work? Do I believe the progression of my disease which indicates that seizures at this point due to several reason (I can discuss them later)?
Or do I believe a man who has NOT seen me in a seizure, who did not ask me more than two questions but did have a long talk with my GP about “what type of person I am” and tested my knees and feet?
The following is the description Cheryl wrote up for the Seizure Neurological specialist, those who have some experience may find it of interest. As for me, I am seeing my quality of life, which is pretty poor due to reduced memory among other issues, going down for the near and far future. At no point did the Neurologist take any of my diseases into consideration. Thank you all for your best wishes. But right now I am three for three.
My name is Cheryl Gilson. I have witnessed Elizabeth McClung having seizures on numerous occasions. I have over 10 years experience in Emergency Medical Services as an EMT and First Responder. I also grew up with cousins who are epileptic. I am familiar with seizure disorders and a number of types of seizures.
Elizabeth and Linda asked me to provide this document because I have witnessed so many of Elizabeth’s seizures. I see her nearly every weekend so I have seen numerous seizures. I am just going to describe the seizures I have witnessed in general, as well as two specific recent episodes. I hope this report provides you with needed information.
The majority of the seizures I have witnessed are absence seizures. Elizabeth will suddenly stop speaking or reacting to her environment. It is as if someone has hit a pause button. She stares blankly and her mouth often either opens and closes rhythmically or she chews at her lip. When she becomes aware again, she is unaware of having had a seizure.
I have witnessed partial seizures where there is clonic-tonic movement of one limb (usually the right arm or right leg) in association with an altered level of consciousness.
I have witnessed what would seem to be a tonic seizure where the muscles become rigid, the back is arched, I hear a stridor breathing pattern and sometimes Elizabeth screams.
I am going to describe two recent episodes I witnessed.
Two weeks ago while staying the weekend at my residence Elizabeth had a series of seizures when she first went to bed. The series began with an absence seizure where Elizabeth simply stared and did not respond when touched or spoken to. That state lasted approximately 30 seconds. Then her eyes closed and she moved into a tonic state. Her muscles contracted and she was arched off the bed. When I touched her, the muscles were rigid. That state also lasted approximately 30 seconds. Elizabeth was completely unresponsive during this period and during the following period. After the tonic state Elizabeth’s muscles all relaxed and then she began convulsing. Her muscles were rapidly constricting and relaxing causing the jerking associated with clonic-tonic or grand mal seizures. This lasted close to two minutes. After the convulsions stopped Elizabeth was unresponsive for a number of minutes. Then she became responsive although she spoke of being extremely tired and wanting to sleep so we let her sleep. It appeared to be a post tictal state.
This past weekend I stayed with Elizabeth and her partner Linda. While speaking to Elizabeth she lost consciousness. She came around a few minutes later and it appeared that she had experienced a TIA. (She has had TIAs before and I believe the Emergency Room Physician at Jubilee also diagnosed a mild stroke at one point.)
Elizabeth asked what had happened and as I was explaining she said “I feel funny” and then went into a tonic state with her muscles rigid and her back arched. Her partner and I moved her to a prone position at which point she began convulsing. The tonic-clonic state (or grand mal) lasted approximately 2 minutes. Once the convulsions ended, Elizabeth slowly became responsive to us again but was very tired.
In the case of all the worst seizures I have witnessed (Grand Mal or complex partial seizures) Elizabeth usually has an aura. There seem to be three different types of aura’s as articulated by Elizabeth. She has spoken of smelling/tasting burning rubber/plastic. She has spoken of seeing blue sparkles. She often just starts saying “Something is happening. Something is wrong. I feel funny”. The last one I attribute to her having a sense of foreboding.
I am of course, not a neurologist but what I have witnessed is the same as the seizures I have dealt with as an EMT. They seem to primarily be triggered by overheating and being extremely tired. It appears that on days where her body has been under the most stress she experiences the most seizures.
10 hours ago