[Oriana]

In my limited experience with two neurologists, they haven't asked me many questions at all, except to find out what my seizures are like.

I'd be interested in knowing what questions your neurologists have asked you.

Thank you.

[Porkette]

Hi Oriana,
My Epi. (epileptologist) has asked me if I've been under more stress than usual, If I use a cell phone or nutra sweet. because all of these things can trigger sz. I've also been asked to discribe my sz. as well as keep a journal of my sz. writing down on a calendar what time I have any sz. often the Epi will see a pattern with my sz. and notice that I have them early in the morning or between 2-5 pm. Ask your neuro. if certain colors or sounds could be triggering your sz. I used to have sz. 7-10 days before my monthly cycle and it would always happen when I was taking a shower the hot water would trigger a sz. you might want to ask your neuro if hormones are causing any of your sz. If you are able to discribe your sz. your neuro should be able to tell you what type of sz. you are having. Write down any questions you have and be sure to ask for a DNA test to be done so the neuro can find the best AED for you with the least side effect. I wish you the best of luck and May God Bless You!

Sue

[Oriana]

Originally Posted by Porkette

Hi Oriana,
My Epi. (epileptologist) has asked me if I've been under more stress than usual, If I use a cell phone or nutra sweet. because all of these things can trigger sz. I've also been asked to discribe my sz. as well as keep a journal of my sz. writing down on a calendar what time I have any sz. often the Epi will see a pattern with my sz. and notice that I have them early in the morning or between 2-5 pm. Ask your neuro. if certain colors or sounds could be triggering your sz. I used to have sz. 7-10 days before my monthly cycle and it would always happen when I was taking a shower the hot water would trigger a sz. you might want to ask your neuro if hormones are causing any of your sz. If you are able to discribe your sz. your neuro should be able to tell you what type of sz. you are having. Write down any questions you have and be sure to ask for a DNA test to be done so the neuro can find the best AED for you with the least side effect. I wish you the best of luck and May God Bless You!

Sue

Thank you so much for your thoughtful reply. The DNA test I didn't know anything about...I will ask my neurologist next week.

Unfortunately it's impossible for me to describe what goes on during the seizures because *I* (conscious mind) is not around to observe. My family has seen a few of them and thus is able to help a little in that regard.

I've been struck by the lack of information I've been asked to give - by both the neurologists I've seen. I was not sure if this was fairly common. And on the other hand I'm not sure what information would be helpful for me to offer.

About sounds and colours: I've been aware for a long time (well before the seizures) that certain sounds and colours affect me. I almost never listen to any music of any kind these days. I used to love music, had musical training, but have developed a strong aversion to it. Some shades of blue/green cause me to feel odd. I didn't know that sound and colour could cause seizures. I'll pay more attention to those things now.

[Porkette]

Hi Oriana,
Be sure to tell your neuro that certain colors and sounds have bothered you and made you feel odd and then if you can discribe to the neuro how it makes you feel. Tell your neuro if after you've had a sz. if you are confused when the sz. is over with for a few seconds, your not sure where you are, if you are tired and if you have a headache.
If I may ask when you have a sz. do you fall to the floor or do you just not remember things like someone who has amnesia? If you have fallen to the floor you may be having tonic clonic (grand mal) sz. If you have a sz. where you just don't remember things for a few seconds you could be having absence (petit mal) or complex partial sz. If you find that when you've come out of a sz. and find yourself in another room you may have had a complex partial sz. Ask those that have seen you have a sz. if they have ever noticed you smacking your lips, wandering around, or picking at your clothing these are all signs of a complex partial sz. If they have just seen you staring like someone daydreaming then you could be having an absence sz. and they last about 30 seconds at the most.
You should ask your neuro to do a special veeg (video e.e.g.) so they can get your sz. on camera and the e.e.g. machine can pick them up also by doing this they will be able to tell what type of sz. you are having and give you the right AED's to stop or reduce your sz. I would also ask the neuro to do a specialized e.e.g. on you where they will flash different color strobe lights one at a time and by doing this than will be able to tell what colors trigger sz. I had this problem just like you and it's called "Photosensitive" where certain colors trigger sz. after I had brain surgery colors no longer bothered me. In regards to having a DNA test done the Neuro may tell you "what are you talking about or we don't do this." DNA testing has been going on for 2 yrs. now if not longer the Drs. just don't want to do the test because they are making money from the phamacutical co. for the more drugs and higher dosages the perscribe. I've found the fewer AED's I take the better off I am. I wish you the best of luck and keep us posted how you make out. Wishing you well and May God Bless You!

Sue

[Oriana]

Originally Posted by Porkette

Hi Oriana,
Be sure to tell your neuro that certain colors and sounds have bothered you and made you feel odd and then if you can discribe to the neuro how it makes you feel. Tell your neuro if after you've had a sz. if you are confused when the sz. is over with for a few seconds, your not sure where you are, if you are tired and if you have a headache.
If I may ask when you have a sz. do you fall to the floor or do you just not remember things like someone who has amnesia? If you have fallen to the floor you may be having tonic clonic (grand mal) sz. If you have a sz. where you just don't remember things for a few seconds you could be having absence (petit mal) or complex partial sz. If you find that when you've come out of a sz. and find yourself in another room you may have had a complex partial sz. Ask those that have seen you have a sz. if they have ever noticed you smacking your lips, wandering around, or picking at your clothing these are all signs of a complex partial sz. If they have just seen you staring like someone daydreaming then you could be having an absence sz. and they last about 30 seconds at the most.
You should ask your neuro to do a special veeg (video e.e.g.) so they can get your sz. on camera and the e.e.g. machine can pick them up also by doing this they will be able to tell what type of sz. you are having and give you the right AED's to stop or reduce your sz. I would also ask the neuro to do a specialized e.e.g. on you where they will flash different color strobe lights one at a time and by doing this than will be able to tell what colors trigger sz. I had this problem just like you and it's called "Photosensitive" where certain colors trigger sz. after I had brain surgery colors no longer bothered me. In regards to having a DNA test done the Neuro may tell you "what are you talking about or we don't do this." DNA testing has been going on for 2 yrs. now if not longer the Drs. just don't want to do the test because they are making money from the phamacutical co. for the more drugs and higher dosages the perscribe. I've found the fewer AED's I take the better off I am. I wish you the best of luck and keep us posted how you make out. Wishing you well and May God Bless You!

Sue

Thank you Sue. *smile* I'm making notes.

The last EEG I had, the technician was going to use a strobe light. She had it set up, explained what the test would be like, but then didn't use it. I asked her why. She just said she didn't need it.

Most but not all of my seizures are at night, while I'm in bed. I also have them during the day. Both night and day I lose consciousness entirely. Yes, I have fallen on the floor and woken up there. Usually I'm alone, but family members have seen the episodes a couple of times. My brother described one he saw partially - he heard me making weird noises, came into my room, and found me staring with eyes wide open, shaking, and making noises. He was unable to bring me around for a few minutes.

Afterward I gasp for air, feel exhausted, headachy, disoriented, and have recently begun to have numbness in the pinky and ring finger area of my left hand. The after-effects seem to be lasting longer and longer. =( At first, the seizures would come and go and more or less right away I'd feel fine. Now it's taking longer for me to recover, a day or more sometimes.

I'm having memory issues too, especially short term.

I felt better before I started taking the AED's, to be frank. They also aren't stopping the seizures. I'm taking both Dilantin and a new med. called Vimpat.

[Porkette]

Hi Orania,
I'm no neuro but what you are discribing sounds like it could be either a myoclonic sz. and that's when the sz. happens when you go to bed or when you first wake up in the morning or you could be having clonic sz. which I had I would be fine then fall to the floor and then come to with my arms jerking around, I couldn't speak but I was totally aware of what was going on. My Epi. put me on keppra and I haven't had a single clonic sz. since then but the drug increased my absence (petit mal) and simple partial sz. The Epi had me on 2000 mg. a day of the drug but now I only take 500 mg. a day and I haven't had any sz. at all in the past few days. I have a feeling that's because I hurt my back and I've been put on tylenol with codine for the pain. My Epi wanted to start me on Vimpat but I told him "No Way" because it can cause heart problems and heart disease runs in my family. Also take note if on the days you have any sz. there's a low pressure in the weather often many people with epilepsy will have sz. a day or 2 before bad weather hits or the same day it starts to rain/snow. I wish you the best of luck and May God Bless You!

Sue

[Oriana]

Originally Posted by Porkette

Hi Orania,
I'm no neuro but what you are discribing sounds like it could be either a myoclonic sz. and that's when the sz. happens when you go to bed or when you first wake up in the morning or you could be having clonic sz. which I had I would be fine then fall to the floor and then come to with my arms jerking around, I couldn't speak but I was totally aware of what was going on. My Epi. put me on keppra and I haven't had a single clonic sz. since then but the drug increased my absence (petit mal) and simple partial sz. The Epi had me on 2000 mg. a day of the drug but now I only take 500 mg. a day and I haven't had any sz. at all in the past few days. I have a feeling that's because I hurt my back and I've been put on tylenol with codine for the pain. My Epi wanted to start me on Vimpat but I told him "No Way" because it can cause heart problems and heart disease runs in my family. Also take note if on the days you have any sz. there's a low pressure in the weather often many people with epilepsy will have sz. a day or 2 before bad weather hits or the same day it starts to rain/snow. I wish you the best of luck and May God Bless You!

Sue

Thank you again Sue. I hope you continue seizure free!

I have seizures during the day and when going to bed/waking up. The latter scare me the most and unfortunately I have more of them. I dread going to bed. However, given my history of head trauma, I'm fortunate to have escaped these frequent seizures as long as I have.

I now understand that I have had (less dramatic, far less frequent) seizures literally for years. I thought they were "normal".

[Porkette]

Hi Oriana.
I'm sorry to hear that it was head trauma that caused you to have sz. I also had trauma and that's what started my sz. when I was 10 yrs. old now I'm almost 48 yrs. old so I've learned to live with my sz. and I know I've done all that I can to try and stop my sz. Make sure you are getting plenty of sleep and stay away from the stress because those are the 2 main things that can trigger sz. for a person, as I'm sure you know.
When you see your neuro you should request a DNA test to find out what AED (sz. med) will stop your sz. with the least side effects from the drug.
I've found taking Diamox and Mysoline the 2 best drugs to control my sz. the best. I've tried many of the news AED's like Lamictal, Trileptal,Neurontin and now Keppra and I've found that the newer AED's don't work as good for me as the older ones like phenobarbital, mysoline, diamox, tegretol, depakene etc. I wish you the best of luck and May God Bless You!

Sue

[southie]

Originally Posted by Oriana

In my limited experience with two neurologists, they haven't asked me many questions at all, except to find out what my seizures are like.

I'd be interested in knowing what questions your neurologists have asked you.

Thank you.

I have been around for decades since dinosaurs roamed
the earth ..



I have trod the soil and watched Neuroscience progressed
over the years.


To answer your question pertaining to what the Doctor is
going to ask - I strongly recommend that you visit this
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of rapport that the Doctor and Patient should have as
well as what type of questions should be discussed,
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Hopefully, you would have a GOOD Neurologist and not
a bad one (unfortunately, there are some bad ones out
there) - so click on the link below and find some time to
learn everything - it is very simple, yet extremely informative!

NO MORE SEIZURES - By Epilepsy Foundation

This is an inter-active site so you can click on it and
hear what REAL PEOPLE with Epilepsy have to say ...

Make sure you have your volume up and bookmark it,
because you may want to return back to the website
and review it as people often tend to forget easily.

Hope this helps!