I don't Know what my seizures are

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Buddy's owner

Buddy's owner

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I's it bad that Idon't know what kinds of seizures I get if I still get them. We just call them full blown seizures as I'm completely unconscious shaking and the noises too. Haven't a clue whether they are t/c's or what. We know what they're not. Going to ask my neurologist when I see him. What do they sound like to you guys just I want to know so it doesn't do my head in not knowing like it's doing now. I came out of my last one then kept going back into it I'm told. Mum said the paramedics asked me while I was in a seizure if I knew where I was, errr how the heck could I answer I was unconscious. They sure as heck aren't partial seizures.
 
They are definetly tonic-clonic siezures,the fact that you are seizuing then go back in to another one means i would be at the doc demanding an appointment with the nuero,or going straight to the neuro him/her self.Don't worry,i just came back from the doctors,iv'e got different seizures than i thought,fuck i hate epilepsy!!!!!!!
 
Crash said:
They are definetly tonic-clonic siezures,the fact that you are seizuing then go back in to another one means i would be at the doc demanding an appointment with the nuero,or going straight to the neuro him/her self.Don't worry,i just came back from the doctors,iv'e got different seizures than i thought,fuck i hate epilepsy!!!!!!!
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That was more thn 7 years ago. I was the first time I'd come out of the seizure than gone back into it. I usually just have the one ome out of it then come round. That was last time I was weaned off my meds. Came off it and lasted 3 months then had the seizures and went straight back on tegretol. Now being weaned off again as gone over 7 years with no seizures so slowly weaning e off again. Let's see if I can go more than 3 months without one. He said if I have a seizure then I go straight back on tegretol. The seizures go out of their way to take 2 days out of my life.
 
Yup,they do my friend.I wish you the best off luck and hope you don't have anothet tonic,Neil.
 
Crash said:
Yup,they do my friend.I wish you the best off luck and hope you don't have anothet tonic,Neil.
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Thank you. I hate the seizures. I had my dose upped as I was getting migraines every 2 weeks too.
 
It seems to be typical of doctors not wanting to label a condition. My own neurologist pussyfooted around with telling me exactly what I had and it was only after my third visit when I asked him straight out that he actually confirmed that I had epilepsy. He confirmed my symptoms before but he never put a name to the condition. I have partial complex seizures and you sound as though you certainly have tonic clonic seizures. Good Luck
 
Sandie said:
It seems to be typical of doctors not wanting to label a condition. My own neurologist pussyfooted around with telling me exactly what I had and it was only after my third visit when I asked him straight out that he actually confirmed that I had epilepsy. He confirmed my symptoms before but he never put a name to the condition. I have partial complex seizures and you sound as though you certainly have tonic clonic seizures. Good Luck
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Mine told me I have epilepsy but didn't tell me what kind of seizures mine are.
 
Buddy's owner can I give you my 2 cents worth after going through God knows how many neurologists; either they did not know or did not want to label it. I had no idea that there was a specialty in epilepsy and got an appointment with this person one short interview and an extended EMU and the proof was there and medications followed in this case they did work. I was on dilantin for so many years and my sz came back improved and stronger they went from a partial sz to a secondary generalized tonic clonic sz. With the partial I would get some warning when I got the aura but the SGTC no aura just lost consciousness and went into convolutions. I guess I became immune to Dilantin and Mysoline but the Vimpat and Keppra have (for now) taken care of this.
May I suggest you see the possibility of seeing an epileptologist and you probably should stop playing “well now let’s try this medication” that’s awful they (neurologist read what a sz is but have no idea what it feels like before and after. Regrettably neurologist might be good BUT that is not what they have specialized in and a lot are very bad and they are just in it for the professional fee.

Neurology is a medical specialty dealing with disorders of the nervous system. To be specific, neurology deals with the diagnosis and treatment of all categories of disease involving the central and peripheral nervous system; or equivalently, the autonomic nervous systems and the somatic nervous systems, including their coverings, blood vessels, and all effector tissue, such as muscle
Epileptologist is a neurologist who specializes in the treatment of epilepsy. Epileptologists are experts in seizures and seizure disorders, anticonvulsants, and special situations involving seizures, such as cases in which all treatment intended to stop seizures has failed and epilepsy (especially poorly controlled epilepsy) in pregnant women. Some epileptologists specialize in treatment of epilepsy in children.
As I said that is my opinion after to many years of seizures I feel that I am controlled.
 
To be honest I can't fault my neurologist. Tegretol has worked fine for me so wouldn't change it unless I became immune. Plus I'm being weaned off tegretol to see if I still have seizures or not.
 
J Cuevas said:
Good luck. Tegretol and I never were compatible.
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Thank you. Last time I was taken off my meds slowly I add, I went 3 months without a seizure then had a seizure. Went straight back on tegretol. If I have a seizure this time I go straight back on it. Me and tegretol are great together.
 
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