Posted by Becky
on February 26, 2000 at 15:51:13:
In Reply to: Re: Pseudoseizures and seizure type. posted by zoe on January 11, 2000 at 10:42:41:
I am hoping to send this to all of you. I have seen approximately 3-4 messages on pseudo seizures. I want to tell you all my frustrating story. If for nothing else to pass on my frustration and for all of you to realize that neurologist are more messed up than we are. From the time I was 7 until I was about 12 I had many instances at school or home when i would faint. My mom took me to doctors and on two occasions put me in the hospital to run test. Each time I had neurologist see me. I had EEG test many of them. Some would come out abnormal and some normal. The doctors all told my parents that, that happened sometimes but didn't really mean anything. They did not beleive I had any neurological problems. Later on during my teenage years while having my little fainting spells I started having convulsions. I would bite my tongue blue and sometimes bite some of it off. Again I went to neurologist and one finally came up with a diagnosis. He told my mom that I had pseudo seizures and sent me to a psychiatrist. He explained what pseudo seizures where however, my mom understood that this was a very real problem just caused by stress. I did go to the psychiatrist one time ( who was a friend of the neurologist). He mentioned something about "faking" seizures. I did not attend anymore and again went on without treatment. I had more seizures during my teenage years and sometimes went to the hospital emergency but nothing every came of this. They would refer us to neurologist and I wouldn't go because I had already been to many who had done nothing. I suffered my last seizure when I was 20 and did not have any medication. When I was 30 I became pregnant with my first child. 8 days after conception I suffered a grand mal seizure that lasted about 4-5 minutes and I was rushed to the hospital. There is where I found out I was pregnant. My obstetrician sent me to a neurologist that put me on medication immediately. I continued to have break through seizures during my pregnancy at the tune of 53 grand mal seizures in 9 months. Medication does not always work well when you are pregnant because your body metabolizes it differently and it is difficult to get your blood levels up to theraputic rates. The last one took place at delivery in front of my neurologist who was checking me while they induced my labor. I did not have another seizure again until my next pregnancy. I decided not to take any medicaiton during my pregnancy because of the dangers to the baby and because my seizures had not been controlled during the last preganancy with the medication. I requested that my new neurologist ( i had moved) do an EEG during my delivery because we felt that this was a good time to find out more about my seizures. My obstetrician gave me dilantin by IV during the delivery and I did not have a seizure however, the EEG showed many epiliptiform waves and other signs of specific epilpsy brain waves. AFter the delivery I fianlly had an MRI that had nver been done by all of the neurologist that had seen me in the past. In my MRI it finally showed a definite diagnosis. I have MESIAL TEMPORAL LOBE SCLEROSIS and ATROPHY of the HIPPOCAMPUS. I was put on a little medication 200 mg. of Dilantin. I had a seizure 6 months after delivering my baby. July 7, 1999, I had another break through seizure on December 29, 1999 and then from January 23, 2000 until now February 26, 2000 I have had 30 seizures. I have gone to the hospital in total over 6 doctors and I don't know how many nurses have witnessed my seizures. I have been on Dilantin and Depakote and now they took the Depakote away and I am taking Gabitril. I just saw my neurologist. I had a seizure in his office. He did not see the whole seizure but saw the end of it. And he told my husband and me that since the medications are not working the way they should be I am not having seizures. he believes i must be having Pseudoseizures. My husband asked him if the seizure I just had....I bit my tongue and slept in his office for about an 1 and 1/2 after the seizure....was a real seizure. He said it was like a real one but he wasn't sure. My husband asked him what about it was different. He said well nothing it looked like a seizure but because the medicines aren't working it can't be real seizures!!!!!This is so Stupid to say the least. I have a condition in my brain that shows I have seizures, my EEG's show that I have seizures, he sees a seizure and for all purposes it looks like a seizure....But it might be some kind of emotional need on my part. Why would anyone make sure they loose their license. My husband is an airline pilot. So I am stuck in the house and we have to have someone with me at all times to baby sit me and the babies. I am a flight attendant and there is the possibility that because of all of this i might not be able to return to work. Yet he feels I am consciously or uncounsioulsy faking this for attention. All of you get 2 opinions get 3 opinions get MRI's done they will tell you alot about your brain. Do one with contrast if possible. It sounds like to me that all of you do have some sort of seizure disorder find out what it is and get the proper treatment.........Don't let some doctor not treat you properly...I beleive that if they can't find the right treatment they rather say you don't have seizures and then they aren't responsible...They have an ego problem... Becky
: : :I too have what my Neuro dx as Pseudoseizures and I have a smell of ammonia and a strange taste in my mouth before I have one. I have also expedrienced nausea and my right hand will be jerking for minutes at a time and I am semi aware of it happening. I had 4 seizures yesterday evening and will admit that I was very stressed. My Neuro told me that I need to work more closely with my Therapist and he said that he lets his patients with this disorder drive. I would be interested in hearing about others with PS. Can all test results be normal or near normal and a person still be diagnosed with epilepsy?
: : : The reason that I am asking is that I had normal or high normal results on most of the neuropsych testing.
: : : I did was some mildly below average in the finger tap test with my left hand and also I scored borderline /low average for some of the memory tests.Also the EEG was normal as was the CATscan.
: : : Because of all the relatively normal test results, the possibility that these are pseudoseizures was brought up.
: : : So far they have started me out on depakote to see if it has any affect on my symptoms.
: : : I have noticed that there is a change, in that the episodes are much less severe and frequent.
: : :
: : : My next question is, would these be pseudoseizures if I am responding to the depakote, and if they don't seem to be associated with stressful or emotional events?
: : : Mainly my episodes occur in the evening and I have also noticed that they have somewhat of a catamenial pattern.
: : :
: : : My symtoms are, feelings of light-headedness or of a disconnected feeling along with nausea and my left arm jerking(it can sometime involve more on the left side). I have had times when I thought that I had blanked out. Most of the time however I will remain aware of what is happening.
: : :
: : : Which leads to my second question, what kind of seizure is that-that is, would it be a complex partial because I feel disconnected from everything or would it be a simple partial because I can remember it?
: : :
: : : Thanks
: : :
: : : Shelly
: I too have that disconected feeling & nausea along with anxiety i have a weakness in my legs and an internal tremor that is driving me crazy.
: For the past 2 years i have been to so many different doctors and they all say "oh, it's stress". Well i know my body and i know what stress can do , but this was not stress. I felt horrible. I went to my 3rd neurologist and he did an EEG in the office & it was normal. I told him that i feel worse when i am moving so, he prescribed a 24 hour EEG and that showed that i had epilepsy . To say the least i was shocked!
: He has put me on Depakote and i've only been on it for 2 weeks. does anyone know how long it takes to work? I am also a little moody from it.