I've had Seizures for over a year

CDC funded page

Not a CDC funded Page

Hello. I just found this website. I hope it will help me understand things a bit better. Well, first off, thanks for reading this and taking time. >.> I have a couple serious head injuries that led to me having seizures and PTSD, Post concussive syndrome, confusion, memory issues, and anxiety depression..A lot of issues. Meh. The tough thing for me is that I have had many tests done, have seen many specialists, two different neurologists, a primary care, concussion specialist, a rehab center, and ive been to hospitals, all over the last maybe 14 months or so. They have not had a set diagnosis whether it's epilepsy or not. I have had MRI's Catscans, EEG's (one of which came back slightly abnormal, second one while on medication came back okay) and all sorts of other tests. I have failed memory tests, my IQ has fallen dramatically. I have even come to the point where I can no longer work, or function in the general public and have been put on SSDI and SSI benefits. I am just not sure how they could not diagnose it as epilepsy. They have said either seizure activity, or unspecified seizure disorder, even though I've been in the hospital many times for it. I had even stopped breathing a few times. My original experience was 9/17/15 when I had my first one, rushed to the ER, similar experience to people who've had clonic tonic seizures, or grand mal, I think theyre the same thing? I have seen a psychologist for social security determination, and he believes I suffer from petite mal seizures. I have both ones where I will stare off in space for extended periods of time, and if moved, I will just collapse and never know about it. My body is unresponsive, and its sometimes completely random, though I always know when it's coming. I feel a tingling in my hands, more specifically fingertips. My thoughts change drastically and I begin to shake and get almost like an irritable spell and start talking about something having nothing to do with what I was just talking about. Other times, I will violently shake, sometimes (my fiancé tells me) I will repeat not words, but like the sounds such as na, or ta, again and again. Not sure if anyone else does or has heard of that? He tells me that I sometimes jerk around enough to move him around with ease, if hes holding me (im about 115 pounds and he's a very strong ex military man, so, it must be bad). Maybe someone has experience similar things,maybe someone else has had doctors kind of withhold calling them an epileptic? I just Kind of want answers, you know? I have been on medications such as Keppra, Topirimate, and quite a few others, those are the two I remember the most though. None have stopped my seizures, or my doctor calls them "spells". sigh. Thanks for reading this (:

Comments

welcome wnting answers is

Submitted by just_joe on Wed, 2016-11-09 - 20:52

welcome wnting answers is fine. Getting them all the times is sometimes harder.I have had MRI's Catscans, EEG's (one of which came back slightly abnormal, second one while on medication came back okay) and all sorts of other tests.The EEG is a brain wave test showing the electrical activity coming from your brain. If it comes back normal they didn't see anything at that time that were different then anybody elses. Now the one that came back abnormal is the one they will look at closer. Abnormalities are generally spikes or waves and the neurologists know where those came from. I had 20-25 EEG's all come back normal. It was that 26th that was a little longer in which I fell asleep in that had abnormalities in that had abnormalities. Spikes, waves aka seizure activity. By seeing where they came from the neurologists looked closer at the MRI and that closer look they found scar tissue. I hit my head really hard in a fall at 7yoa causing a very short concussion. That concussion caused a hemorrhage to the brain. That little bit of blood caused scar tissue. That scar tissue is what caused me to have epilepsy. All of my tests were done one and a half years after my grand mal. But yes clonic tonic seizures, or grand mal are the same. Now about your moving your husband around while having a seizure. It can be done very easily. Picture a 13 yo boy that weighed 85 lbs having his step father grabbing his wrist to hold him down. Wellllllllllll I tossed Pete over my body with my right hand. He was a marine and was 6'3" weighing 235 lbs. I couldn't even pick up the set of bar bells he had gotten me to start working out with. Petite mal (absence seizures) I had been having for years Along with focal seizures (look like petite mal but can go into other seizures) Daydreaming in class was what I was written up for. In other words I do know it takes time to look at everything and make the right diagnosis. It took over 2 years for them to have most of the diagnosis. You see if it is epilepsy they was to make sure which type of epilepsy and the different types of seizures you can have. My diagnosis was back in 1964. It was Grand Mal, Petite Mal and Focal Motor Epilepsy. The worst seizure. the slightest seizure and almost everything between them.PTSD has it's issues to as does Post concussive syndrome along with epilepsy. All come from the central nervous system which might be why nothing is definite yet. Oh and yes a person can have one or two or even more. It takes time find the right medication and dosage for you. A medication that works for one person may not for th next. The same with dosages. It takes time for your body to get used to them and for the therapeutic levels to build in your body. They are nothing like aspirin where once taken it is gone after some hours.Oh and yes some docs call them spells... Hell I can remember hearing my brother saying "Hey Mom he's having another spazz attack" and yes I have called them that and laugh about it and have laughed about the seizures too. Humor eases stress and stress is a trigger for many people.I do hope this helps and you get the assistance you needJoe

welcome wnting answers is fine. Getting them all the times is sometimes harder.I have had MRI's Catscans, EEG's (one of which came back slightly abnormal, second one while on medication came back okay) and all sorts of other tests.The EEG is a brain wave test showing the electrical activity coming from your brain. If it comes back normal they didn't see anything at that time that were different then anybody elses. Now the one that came back abnormal is the one they will look at closer. Abnormalities are generally spikes or waves and the neurologists know where those came from. I had 20-25 EEG's all come back normal. It was that 26th that was a little longer in which I fell asleep in that had abnormalities in that had abnormalities. Spikes, waves aka seizure activity. By seeing where they came from the neurologists looked closer at the MRI and that closer look they found scar tissue. I hit my head really hard in a fall at 7yoa causing a very short concussion. That concussion caused a hemorrhage to the brain. That little bit of blood caused scar tissue. That scar tissue is what caused me to have epilepsy. All of my tests were done one and a half years after my grand mal. But yes clonic tonic seizures, or grand mal are the same. Now about your moving your husband around while having a seizure. It can be done very easily. Picture a 13 yo boy that weighed 85 lbs having his step father grabbing his wrist to hold him down. Wellllllllllll I tossed Pete over my body with my right hand. He was a marine and was 6'3" weighing 235 lbs. I couldn't even pick up the set of bar bells he had gotten me to start working out with. Petite mal (absence seizures) I had been having for years Along with focal seizures (look like petite mal but can go into other seizures) Daydreaming in class was what I was written up for. In other words I do know it takes time to look at everything and make the right diagnosis. It took over 2 years for them to have most of the diagnosis. You see if it is epilepsy they was to make sure which type of epilepsy and the different types of seizures you can have. My diagnosis was back in 1964. It was Grand Mal, Petite Mal and Focal Motor Epilepsy. The worst seizure. the slightest seizure and almost everything between them.PTSD has it's issues to as does Post concussive syndrome along with epilepsy. All come from the central nervous system which might be why nothing is definite yet.  Oh and yes a person can have one or two or even more. It takes time find the right medication and dosage for you.  A medication that works for one person may not for th next. The same with dosages. It takes time for your body to get used to them and for the therapeutic levels to build in your body. They are nothing like aspirin where once taken it is gone after some hours.Oh and yes some docs call them spells... Hell I can remember hearing my brother saying "Hey Mom he's having another spazz attack" and yes I have called them that and laugh about it and have laughed about the seizures too. Humor eases stress and stress is a trigger for many people.I do hope this helps and you get the assistance you needJoe 

welcome wnting answers is fine. Getting them all the times is sometimes harder.I have had MRI's Catscans, EEG's (one of which came back slightly abnormal, second one while on medication came back okay) and all sorts of other tests.The EEG is a brain wave test showing the electrical activity coming from your brain. If it comes back normal they didn't see anything at that time that were different then anybody elses. Now the one that came back abnormal is the one they will look at closer. Abnormalities are generally spikes or waves and the neurologists know where those came from. I had 20-25 EEG's all come back normal. It was that 26th that was a little longer in which I fell asleep in that had abnormalities in that had abnormalities. Spikes, waves aka seizure activity. By seeing where they came from the neurologists looked closer at the MRI and that closer look they found scar tissue. I hit my head really hard in a fall at 7yoa causing a very short concussion. That concussion caused a hemorrhage to the brain. That little bit of blood caused scar tissue. That scar tissue is what caused me to have epilepsy. All of my tests were done one and a half years after my grand mal. But yes clonic tonic seizures, or grand mal are the same. Now about your moving your husband around while having a seizure. It can be done very easily. Picture a 13 yo boy that weighed 85 lbs having his step father grabbing his wrist to hold him down. Wellllllllllll I tossed Pete over my body with my right hand. He was a marine and was 6'3" weighing 235 lbs. I couldn't even pick up the set of bar bells he had gotten me to start working out with. Petite mal (absence seizures) I had been having for years Along with focal seizures (look like petite mal but can go into other seizures) Daydreaming in class was what I was written up for. In other words I do know it takes time to look at everything and make the right diagnosis. It took over 2 years for them to have most of the diagnosis. You see if it is epilepsy they was to make sure which type of epilepsy and the different types of seizures you can have. My diagnosis was back in 1964. It was Grand Mal, Petite Mal and Focal Motor Epilepsy. The worst seizure. the slightest seizure and almost everything between them.PTSD has it's issues to as does Post concussive syndrome along with epilepsy. All come from the central nervous system which might be why nothing is definite yet. Oh and yes a person can have one or two or even more. It takes time find the right medication and dosage for you. A medication that works for one person may not for th next. The same with dosages. It takes time for your body to get used to them and for the therapeutic levels to build in your body. They are nothing like aspirin where once taken it is gone after some hours.Oh and yes some docs call them spells... Hell I can remember hearing my brother saying "Hey Mom he's having another spazz attack" and yes I have called them that and laugh about it and have laughed about the seizures too. Humor eases stress and stress is a trigger for many people.I do hope this helps and you get the assistance you needJoe

I've had Seizures for over a year

Comments

welcome wnting answers is

Submitted by just_joe on Wed, 2016-11-09 - 20:52

Sign Up for Emails