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- Thread starter Blonde Angel
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Blonde Angel
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Yes, the feeling of not being in control with epilepsy would be quite difficult I would imagine, especially for those with lots of seizure activity...all the best..x
Blonde Angel
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@ MAB
No worries..whenever you want to pick my brains with the Autism stuff you are most welcome..or anyone else or that matter.. Just remember what works for me may not work for you, but it's always important to network...
I did start a thread in the nursery section... For anyone to post...
No worries..whenever you want to pick my brains with the Autism stuff you are most welcome..or anyone else or that matter.. Just remember what works for me may not work for you, but it's always important to network...
I did start a thread in the nursery section... For anyone to post...
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By suffer I don't know if you are referring to pain or not? I just want to let you know that a seizure it's self does not hurt. The only time that you may have pain is physical pain caused by something that you did during the seizure, like falling down for instance. But that's something that would hurt from wither you were having a seizure or not. After I have a seizure I'll have a headache that is one thing that I know that is caused by the seizure but it happens after, not during.
And rant all you want, most of us do!
MAB
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I have been so busy at work today that I haven't had a chance to send you a message. Now it's almost time for bed so I will try again tomorrow.
MAB
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Different drugs really do affect different people differently than they do other people. If I take benadryl or Dramimine I will be up all night.They wire me to the point of being agitated, as does the muscle relaxer Flexaril. Over the years I have learned I have problems with many anticholinergic drugs. Either with severe agitation or the inability to urinate or both.
Blonde Angel
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valeriedl..
So, just to clarify .. There's definitely no pain experienced by a person during a seizure ?
Even though I've seen my daughter have seizures since 2009 I never like seeing those expressions on her face.
It's interesting that my parents have never ever seen my daughter have a seizure as yet. I don't let my mother babysit as she would freak if she had a seizure& I couldn't do that to her.
I think if a person has never witnessed a seizure, it can be quite scary for them.
Having migraines must be awful.
I get headaches when feeling stressed ..& that's bad enough for me.
So, just to clarify .. There's definitely no pain experienced by a person during a seizure ?
Even though I've seen my daughter have seizures since 2009 I never like seeing those expressions on her face.
It's interesting that my parents have never ever seen my daughter have a seizure as yet. I don't let my mother babysit as she would freak if she had a seizure& I couldn't do that to her.
I think if a person has never witnessed a seizure, it can be quite scary for them.
Having migraines must be awful.
I get headaches when feeling stressed ..& that's bad enough for me.
Blonde Angel
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Another thing.
Why is it the medical people don't give you the full story on drug side effects? Is it because they want you to go through the process of working it out yourself. I get fed up with contradictions like 1dr was adamant that Tegretol didn't cause weight gain..yet I had a daughter gain 10kg in the last yr & when you read of real life people complaining of abdominal weight gain...well who do you believe!
I suppose like most here, it's a process of finding the drug/s that going to have the least drama & be seizure free as possible...
Why is it the medical people don't give you the full story on drug side effects? Is it because they want you to go through the process of working it out yourself. I get fed up with contradictions like 1dr was adamant that Tegretol didn't cause weight gain..yet I had a daughter gain 10kg in the last yr & when you read of real life people complaining of abdominal weight gain...well who do you believe!
I suppose like most here, it's a process of finding the drug/s that going to have the least drama & be seizure free as possible...
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During a seizure you can sort of say that your brain stops telling your body to do things right. Even though she may be making a face that looks like she's hurting it's because the muscles don't know that they should be keeping them in the right place. Many times during a seizure one side of my face will sag with my mouth hanging open and I'll start drooling. I do all sorts of other things during them too, it's a long list.
I think seizures are worse for people who aren't having it because they see what is going on but the person who is having the seizure have no clue what they are doing.
I've had epilepsy for 11 years and most of my family and friends haven't seen me have a seizure. If she's with someone who has never seen her have a seizure let them know what she usually does during one, let them know how long they normally last and tell them what to do. The main things are to make sure she can't hurt herself and they just have to wait it out until it's over. Tell them if they get too scared then to call 911. I had a seizure while I was talking to her on the phone about a year ago. It was the only one that I'd had with (if you want to call it that) her. She kept me on the phone and called my husband, who was home, on his cell to let him know what was happening. She really wasn't scared, just very worried about me.
As far as med side effects go if you were to read a list of all the side effects that a medicine could cause you might be there for a half an hour reading them. My neuro usually tells me the most common side effects that people have from that certain medicine. Weight gain or loss, tiredness, rash, irritability (with keppra), headache and things like that. If I notice that something else has begun happening after I started taking the medicine I tell him. He will let me know that it is probably side effect of one of the meds or if it isn't then I should see another dr.
And yes it is a process of finding out what meds and dosages of them will work the best for your daughter. I went through a good bit of different meds because the side effects were too bad or they weren't working for me at all.
I think seizures are worse for people who aren't having it because they see what is going on but the person who is having the seizure have no clue what they are doing.
I've had epilepsy for 11 years and most of my family and friends haven't seen me have a seizure. If she's with someone who has never seen her have a seizure let them know what she usually does during one, let them know how long they normally last and tell them what to do. The main things are to make sure she can't hurt herself and they just have to wait it out until it's over. Tell them if they get too scared then to call 911. I had a seizure while I was talking to her on the phone about a year ago. It was the only one that I'd had with (if you want to call it that) her. She kept me on the phone and called my husband, who was home, on his cell to let him know what was happening. She really wasn't scared, just very worried about me.
As far as med side effects go if you were to read a list of all the side effects that a medicine could cause you might be there for a half an hour reading them. My neuro usually tells me the most common side effects that people have from that certain medicine. Weight gain or loss, tiredness, rash, irritability (with keppra), headache and things like that. If I notice that something else has begun happening after I started taking the medicine I tell him. He will let me know that it is probably side effect of one of the meds or if it isn't then I should see another dr.
And yes it is a process of finding out what meds and dosages of them will work the best for your daughter. I went through a good bit of different meds because the side effects were too bad or they weren't working for me at all.
Blonde Angel
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My daughters left side of her face will usually sag, its never her right..& yes she drools.
The carers & respite have been trained to use Midazolam in the event of her seizure going > than 5 minutes..fortunately we have never had to use it yet.
I am glad there is so much choice in meds but it can also get confusing, some of you forum members sound like experts in pharmacology..so yes one has to educate themselves.
The carers & respite have been trained to use Midazolam in the event of her seizure going > than 5 minutes..fortunately we have never had to use it yet.
I am glad there is so much choice in meds but it can also get confusing, some of you forum members sound like experts in pharmacology..so yes one has to educate themselves.