Hello y'all - had a seizure this past Friday night. My history are tonic clinics. In the past year and a half my brain has switched to some variety of partials. It used to be customary that I would have t/cs upon falling asleep. Last Friday night I fell asleep and about 1 hour later I awoke to "weird terrifying feelings" as though I was having a shortened t/c. The fear and anxiety were indescribable. I knew where I was. Now I have the traditional hangover. No work this week. Have been on dilantin for over 35 years. Going to new neuro today. Have not been to one in ten years. Any of you fine folks have Med recommendations I would greatly appreciate. I have had 4 partials in the last year last t/c in 2010.
a change in seizures
- Thread starter gigi
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(((HUGS))) gigi, hell of a week.
not uncommon for one's seizures to change, the usual type can dissipate and a new one(s) may rear its head, NO FUN with partials. there are fairly set differences between a simple and complex partial... what you've described (weird, fear, anxiety, but knew where you were) are some of the symptoms of a simple. so great you stayed 'knowing', turning complex means turning partially unconscious and can be so dangerous.
best of luck with your neuro today; my only luck with just the s.p's was topamax (10 months seiz-free, tho due to lesion it didn't last), my first neuro put me on it as a well-known partial/t.c. med, and vimpat (lowered partials but the side effects weren't worth it - vimpat is a love or hate drug, kinda like keppra). damn chance like any of them right, but these two did lower them for me.
good to hear about getting off the dilantin after that long, will benefit the 'next' 35 years ey
not uncommon for one's seizures to change, the usual type can dissipate and a new one(s) may rear its head, NO FUN with partials. there are fairly set differences between a simple and complex partial... what you've described (weird, fear, anxiety, but knew where you were) are some of the symptoms of a simple. so great you stayed 'knowing', turning complex means turning partially unconscious and can be so dangerous.
best of luck with your neuro today; my only luck with just the s.p's was topamax (10 months seiz-free, tho due to lesion it didn't last), my first neuro put me on it as a well-known partial/t.c. med, and vimpat (lowered partials but the side effects weren't worth it - vimpat is a love or hate drug, kinda like keppra). damn chance like any of them right, but these two did lower them for me.
good to hear about getting off the dilantin after that long, will benefit the 'next' 35 years ey
Janus
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I understand. I had a change in seizures myself. For years i had partials and this year they started being T/C's and now back to simple partials occasionally. It is scary and i am aware of where i am during but have overwhelming 'terror' feelings at the time. and my T/C's have been 'sustained' and i have keppra now at 1500 per day. So, who knows. Best of luck. let us know how it turns out.
N Sperlo
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Changes are common, gigi. Sounds like you had a minor case of jamais vu. I have before. Its very uncomfortable. You know where you are, but you may have no sense of time. Reality may not feel very real. Upset stomach, shaky, scared, etc.
After this happened, I started Vimpat. Everything has been good since we got the dosage ironed out.
After this happened, I started Vimpat. Everything has been good since we got the dosage ironed out.
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hope you don't have to wait long here is simple seizures in four categories...
Motor seizures:
These cause a change in muscle activity. For example, a person may have abnormal movements such as jerking of a finger or stiffening of part of the body. These movements may spread, either staying on one side of the body (opposite the affected area of the brain) or extending to both sides. Other examples are weakness, which can even affect speech, and coordinated actions such as laughter or hand movements. The person may or may not be aware of these movements.
Sensory seizures:
These cause changes in any one of the senses. People with sensory seizures may smell or taste things that aren't there; hear clicking, ringing, or a person's voice when there is no actual sound; or feel a sensation of "pins and needles" or numbness. Seizures may even be painful for some patients. They may feel as if they are floating or spinning in space. They may have visual hallucinations, seeing things that aren't there (a spot of light, a scene with people). They also may experience illusions—distortions of true sensations. For instance, they may believe that a parked car is moving farther away, or that a person's voice is muffled when it's actually clear.
Autonomic seizures:
These cause changes in the part of the nervous system that automatically controls bodily functions. These common seizures may include strange or unpleasant sensations in the stomach, chest, or head; changes in heart rate or breathing; flushing or sweating; or goose bumps.
Psychic seizures:
These seizures change how people think, feel, or experience things. They may have problems with memory, garbled speech, an inability to find the right word, or trouble understanding spoken or written language. They may suddenly feel emotions like fear, depression, or happiness with no outside reason. Some may feel as though they are outside their body or may have feelings of déja vu ("I've been through this before") or jamais vu ("This is new to me"— even though the setting is really familiar).
here is simple seizures in four categories... Motor seizures:
These cause a change in muscle activity. For example, a person may have abnormal movements such as jerking of a finger or stiffening of part of the body. These movements may spread, either staying on one side of the body (opposite the affected area of the brain) or extending to both sides. Other examples are weakness, which can even affect speech, and coordinated actions such as laughter or hand movements. The person may or may not be aware of these movements.
Sensory seizures:
These cause changes in any one of the senses. People with sensory seizures may smell or taste things that aren't there; hear clicking, ringing, or a person's voice when there is no actual sound; or feel a sensation of "pins and needles" or numbness. Seizures may even be painful for some patients. They may feel as if they are floating or spinning in space. They may have visual hallucinations, seeing things that aren't there (a spot of light, a scene with people). They also may experience illusions—distortions of true sensations. For instance, they may believe that a parked car is moving farther away, or that a person's voice is muffled when it's actually clear.
Autonomic seizures:
These cause changes in the part of the nervous system that automatically controls bodily functions. These common seizures may include strange or unpleasant sensations in the stomach, chest, or head; changes in heart rate or breathing; flushing or sweating; or goose bumps.
Psychic seizures:
These seizures change how people think, feel, or experience things. They may have problems with memory, garbled speech, an inability to find the right word, or trouble understanding spoken or written language. They may suddenly feel emotions like fear, depression, or happiness with no outside reason. Some may feel as though they are outside their body or may have feelings of déja vu ("I've been through this before") or jamais vu ("This is new to me"— even though the setting is really familiar).
Ok am out. He did not want to change my dilantin. Just from the suspension to capsules. Thinks my seizures are relatively controlled. Says there are risks to changing meds. He wants to see me back in a few months. Am getting an eeg on Thursday.
Thanks qtowngirl for seizure descriptions. Sure am glad I found this site 4 years ago. I can get more info here than from medical community.
Thanks qtowngirl for seizure descriptions. Sure am glad I found this site 4 years ago. I can get more info here than from medical community.
petero
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hey I've gotten started on Vimpat also! been with it over a month now and it seems like it has mellowed out but with some weirdness at first.
it's expensive as sh!t I understand - luckily I've gotten the freebie hookup from an E group in town.
otherwise related to the post - I recommend getting your phenytoin levels checked - though I'm sure you're familiar with the procedure if you've been on it for 35 years Gigi - but just a reminder
keep up with the fish oil too as it helps mellow out the chemical reactions from what I've heard
petero
Glad you brought up the fish oil. I had been thinking about that lately and it seems like I need to be taking some. Thanks for the suggested level check of medication. I do that about every 6 months unless I have had a seizure. Got an eeg today and will get results next week. They did the strobe light and heavy panting and then I relaxed for 30 mom afterwards. Eegs have not changed much but that is a first foe me to do the strobe light and panting. Good times...
Glad you brought up the fish oil. I had been thinking about that lately and it seems like I need to be taking some. Thanks for the suggested level check of medication. I do that about every 6 months unless I have had a seizure. Got an eeg today and will get results next week. They did the strobe light and heavy panting and then I relaxed for 30 mom afterwards. Eegs have not changed much but that is a first foe me to do the strobe light and panting. Good times...