Epilepsy, seizures...

[DonnaWanna]

howd it go today Danny?

hope ur doin well still

[Drumnut]

QUOTE (DonnaWanna @ Feb 8 2010, 01:09 PM)

howd it go today Danny? hope ur doin well still

Did good today, I was supposed to be going for another test in the morning for possible surgery but my Dr called and said the drug they were going to use had "expired". He said it would probably be okay anyway but wants to get "fresh" drugs just to make sure everything was right. I had all the pre-tests done so now once the "fresh drugs" come in, they'll reschedule the test. I'm glad my Dr pays attention to details like this. My Dr and I disagree about some things but I think he's starting to see my case as more of a challenge than just a Dr/patient relationship.

[Drumnut]

QUOTE (afurrything @ Feb 8 2010, 06:54 AM)

My three year old had seizures. She was on topomax(sp) and phenobarbital. And yeah they both made her sleep all the time. I hated it. Not sure about eating though because she had a feeding tube and we just fed her on a schedule. Hope you can find the right meds to get your seizures under control.

I've tried just about all of them and haven't found the right one yet, now I'm looking at possible surgery to get them under control. I hate the side effects of all of the Epilepsy drugs I've taken. The drug Lamictal I'm taking now is making my hair fall out! Hopefully soon, I'll be able to get off Epilepsy meds forever!

[Der Trommler]

My psychologist feels I only have ADHD. I still have no answer for the blackouts or the dizzy spells....My neurologist feels that my inner ear was damage when I hit my head which would be why I have hearing loss. He has tried to figure out the blackouts but the only thing he's come up with has been narcolepsy....I'm on meds that can treat that too (Ritalin)

[Drumnut]

No seizures today!!!

 

I have Tinnitus but my Dr doesn't seem to think it has anything to do with my Epilepsy.

 

 

[Der Trommler]

QUOTE (Drumnut @ Feb 11 2010, 02:38 AM)

No seizures today!!! I have Tinnitus but my Dr doesn't seem to think it has anything to do with my Epilepsy.

My neurologist feels that my tinnitus is a direct result of the car accident. The injury to my head may have caused the little bones in the ear to become loose....

[Drumnut]

None today! I still hate all the meds they have me on.

[Drumnut]

None today!

 

I have to make a call first thing in the morning to confirm an appointment, I have an all day test from 9:00 to 4:00 coming up for possible surgery. I received a call about an appointment for first thing in the morning and am looking at the appointment form right now, it clearly says the appointment is for Tuesday 2/16/10. I've already missed one big test because the paperwork had the wrong date on it and don't want this one to get screwed up too. My Epilepsy has been a nightmare for me ever since the first seizure I ever had. I can't work, I can't drive, I feel stoned (and not a good kinda stoned) from the side-effects from the meds I'm on and have no life. I'm on disability right now which isn't much, but that helps take care of most of my medical care and drug costs. I'm on Medicare but I don't know what that's going to turn into if/when Obama-care passes. I've already been told that most of my out of pocket costs for drugs, tests, and office visits will be going up. I have no idea where I'm going to come up with the extra cash when that happens. (I'm NOT an Obama-care fan but this isn't the politics forum so I'll leave it at that) If not for living with my Father right now, I have no idea where I'd be. He's a retired old fart and worked VERY hard for it, he shouldn't be running me around for all my Dr's appointments, hospitals, and tests, he should be out chasing Golf balls around the Golf course. God bless you Dad. I want to get my Epilepsy under control and be able to drive myself to work every day. I'd give up what little disability and Medicare is in a heart-beat if I could get my seizures under control, work, and live some kind of normal life.

[Drumnut]

No seizures today!

 

Did all the memory tests the other day & failed miserably. I always say, I have "CRS." (Can't remember sh!t). None today, but I still hate all the drugs they have me on. Now, the pharmacy has my refills all screwed up & the new drug they put me on, they filled twice. The other one I'm on that I want to quit, they say I don't have any refills and it's supposed to be on "auto-refill". If I run out of refills, they're supposed to call the Dr's office. No word on surgery but in a way I hope I'm not a candidate for it. I don't really want anyone cracking into this thick skull of mine unless I really need it and surgery will get my sezures under control.

[Der Trommler]

QUOTE (Drumnut @ Feb 19 2010, 05:12 AM)

No seizures today! Did all the memory tests the other day & failed miserably. I always say, I have "CRS." (Can't remember sh!t). None today, but I still hate all the drugs they have me on. Now, the pharmacy has my refills all screwed up & the new drug they put me on, they filled twice. The other one I'm on that I want to quit, they say I don't have any refills and it's supposed to be on "auto-refill". If I run out of refills, they're supposed to call the Dr's office. No word on surgery but in a way I hope I'm not a candidate for it. I don't really want anyone cracking into this thick skull of mine unless I really need it and surgery will get my sezures under control.

I'm sorry to hear that :*(

 

I passed most of my tests but they were fairly easy. My psychiatrist feels I didn't get the full test but it doesn't matter now. I still think I suffer from PCS but it can't be diagnosed because of how long ago it was. From what the psych told me, I will have to live with not knowing. so, I deal with something that has similar symptoms and get the meds to see if it works.

This week, I had an incident where I had an anxiety attack. It subsided until I got in to work. I had a not so nice email from one of my supervisors. My leg started to shake, then my right arm followed by my left. The right leg and arm stopped but I was getting a nasty tremor that wouldn't stop. I talked to my PCP and went in to see her. My BP's second number was up over 10 points. So I have to go back to see if I have high blood pressure. I have to also talk to the psych to see if this is a side effect of the meds. My feeling is that it isn't because it was a one time thing. Not sure....

[Mara]

QUOTE (Drumnut @ Feb 19 2010, 05:12 AM)

No seizures today! Did all the memory tests the other day & failed miserably. I always say, I have "CRS." (Can't remember sh!t). None today, but I still hate all the drugs they have me on. Now, the pharmacy has my refills all screwed up & the new drug they put me on, they filled twice. The other one I'm on that I want to quit, they say I don't have any refills and it's supposed to be on "auto-refill". If I run out of refills, they're supposed to call the Dr's office. No word on surgery but in a way I hope I'm not a candidate for it. I don't really want anyone cracking into this thick skull of mine unless I really need it and surgery will get my sezures under control.

I've learned so much about epilepsy/seizure disorders from this thread. (And I am sorry that drumnut has to be the one providing the education from firsthand experience).

I had always just thought it was one of those things that got diagnosed, you got meds for it, and with some exceptions, lived life pretty normally with maybe the occasional seizure. Boy, was I ever wrong.

 

drummy, are you worried that brain surgery might turn you into a liberal?

[Drumnut]

QUOTE (Mara @ Feb 19 2010, 10:38 AM)

QUOTE (Drumnut @ Feb 19 2010, 05:12 AM) No seizures today! Did all the memory tests the other day & failed miserably. I always say, I have "CRS." (Can't remember sh!t). None today, but I still hate all the drugs they have me on. Now, the pharmacy has my refills all screwed up & the new drug they put me on, they filled twice. The other one I'm on that I want to quit, they say I don't have any refills and it's supposed to be on "auto-refill". If I run out of refills, they're supposed to call the Dr's office. No word on surgery but in a way I hope I'm not a candidate for it. I don't really want anyone cracking into this thick skull of mine unless I really need it and surgery will get my sezures under control. I've learned so much about epilepsy/seizure disorders from this thread. (And I am sorry that drumnut has to be the one providing the education from firsthand experience). I had always just thought it was one of those things that got diagnosed, you got meds for it, and with some exceptions, lived life pretty normally with maybe the occasional seizure. Boy, was I ever wrong.   drummy, are you worried that brain surgery might turn you into a liberal? Impossible! If I have surgery, I'll still have at least 99.9% of my brain left! They'd have to take away 100% for me to become a liberal!!! /sarcasm intended   Meds worked for me at first, but I made some ill advised changes to my life that made my Epilepsy worse. Uncontrolled seizures make a HUGE difference in being able to live a normal life. The hardest thing for me to deal with besides the seizures is the no driving thing and now, not working because I'm on disability. Now that I'm back in warmer weather and getting better treatment, my Epilepsy control is getting much better than it was in cold weather. My head and I don't agree with cold weather. I'm not looking forward to surgery if that's what it comes to. If that's what it comes to, I have to do what it takes to be able to live some kind of normal life.

[Drumnut]

None today. I hate my Epilepsy meds, they make me sleep too much. My sleep schedule is all screwed up, I sleep all day and I'm up all night most of the time.

[Der Trommler]

QUOTE (Drumnut @ Feb 23 2010, 03:43 AM)

None today. I hate my Epilepsy meds, they make me sleep too much. My sleep schedule is all screwed up, I sleep all day and I'm up all night most of the time.

I'm sorry to hear tha, Drummy....I hope things work out for you in the end

[Drumnut]

No seizures today! I've been trying to get up earlier to get my sleep schedule squared out. I have a few early morning Dr's appt's coming up so that should help me get my sleep schedule turned back around. Maybe if I stop staying up so late here on TRF, that might help.

[Test4VitalSigns]

good to hear you are doing ok Danny. My mom's been seizure-free for a while now; I think her moving here to London, Ontario from up north been doing wonders for her. The quacks up there have been over-prescribing Dilantin for her and causing her unneccessary health issues but now she is doing fine thanks to better medical help.

[Drumnut]

QUOTE (Test4VitalSigns @ Feb 24 2010, 02:37 AM)

good to hear you are doing ok Danny.  My mom's been seizure-free for a while now; I think her moving here to London, Ontario from up north been doing wonders for her.  The quacks up there have been over-prescribing Dilantin for her and causing her unneccessary health issues but now she is doing fine thanks to better medical help.

Thanks, glad to hear your Mom's been seizure free! I moved from Erie, PA and the cold weather there affected me, I had more seizures there than I ever had. Now that I'm back in Vegas and enjoying the warmer weather, my seizures are better under control than they have been in years! Dr's don't want to hear it, but cold weather affects Epilepsy. I miss Dilantin, now that I'm looking at possible surgery, my Dr won't let me switch back to Dilantin from all the other meds they have me on now. When my dosage was at a theraputic level, Dilantin was the best drug I've ever taken with the least side effects. If I'm not a candidate, I still want to insist that my Dr let me try Dilantin again. Good luck to your Mom staying seizure free!!!

[Drumnut]

None today!!!

 

Figures I get approved for Medicare and start getting to see new Dr's about getting my Epilepsy under control and now am looking at Barry-care I like it or not.

[Drumnut]

None today! I'm going in for my last test in the morning for possibly surgery. I'm am NOT going to consent to having surgery unless they let me try the drug I liked first. It's my decision weather or not if I want to let them crack into my skull!!! If they say they want me to have surgery, I'm going to insist they let me try Dilantin again first or I'm going to have to find a Dr who will, even if it means walking out of my Dr's office before I go through with having surgery. Surgery is the LAST thing I want to do. The drug I'm on now, Lamictal isn't even for the type of seizures I have, Dilantin is. Why in the hell won't they let me try the med that I liked again?

[Arleen2112]

QUOTE (Drumnut @ Feb 26 2010, 02:48 AM)

None today! I'm going in for my last test in the morning for possibly surgery. I'm am NOT going to consent to having surgery unless they let me try the drug I liked first. It's my decision weather or not if I want to let them crack into my skull!!! If they say they want me to have surgery, I'm going to insist they let me try Dilantin again first or I'm going to have to find a Dr who will, even if it means walking out of my Dr's office before I go through with having surgery. Surgery is the LAST thing I want to do. The drug I'm on now, Lamictal isn't even for the type of seizures I have, Dilantin is. Why in the hell won't they let me try the med that I liked again?

Hope everything went well for you at the doctor Danny

[Drumnut]

QUOTE (Arleen2112 @ Feb 26 2010, 01:47 PM)

QUOTE (Drumnut @ Feb 26 2010, 02:48 AM) None today! I'm going in for my last test in the morning for possibly surgery. I'm am NOT going to consent to having surgery unless they let me try the drug I liked first. It's my decision weather or not if I want to let them crack into my skull!!! If they say they want me to have surgery, I'm going to insist they let me try Dilantin again first or I'm going to have to find a Dr who will, even if it means walking out of my Dr's office before I go through with having surgery. Surgery is the LAST thing I want to do. The drug I'm on now, Lamictal isn't even for the type of seizures I have, Dilantin is. Why in the hell won't they let me try the med that I liked again? Hope everything went well for you at the doctor Danny Thanks Arleen, all went well today. It was a strange feeling when they injected the drug into me and tested memory from one side to the other. They drugged one side of my brain and did a few memory tests, remembering words, and remembering objects. When they injected drugs into the right side of my brain, my left side had trouble remembering them. When the drug wore off, they did the same with the other and I had a hard time remembering anything. My Dr is going to follow up with me and let me know the results of the tests and what's next. I'm in hurry up and wait mode for now.

[DonnaWanna]

QUOTE (Drumnut @ Feb 26 2010, 03:48 AM)

None today! I'm going in for my last test in the morning for possibly surgery. I'm am NOT going to consent to having surgery unless they let me try the drug I liked first. It's my decision weather or not if I want to let them crack into my skull!!! If they say they want me to have surgery, I'm going to insist they let me try Dilantin again first or I'm going to have to find a Dr who will, even if it means walking out of my Dr's office before I go through with having surgery. Surgery is the LAST thing I want to do. The drug I'm on now, Lamictal isn't even for the type of seizures I have, Dilantin is. Why in the hell won't they let me try the med that I liked again?

Best of luck to u Danny

YOU do whats right for YOU

and dont let ANY doctors bully or talk

u into doin something ur not comffy with.

Ur in my thoughts

[Drumnut]

QUOTE (DonnaWanna @ Feb 26 2010, 08:45 PM)

QUOTE (Drumnut @ Feb 26 2010, 03:48 AM) None today! I'm going in for my last test in the morning for possibly surgery. I'm am NOT going to consent to having surgery unless they let me try the drug I liked first. It's my decision weather or not if I want to let them crack into my skull!!! If they say they want me to have surgery, I'm going to insist they let me try Dilantin again first or I'm going to have to find a Dr who will, even if it means walking out of my Dr's office before I go through with having surgery. Surgery is the LAST thing I want to do. The drug I'm on now, Lamictal isn't even for the type of seizures I have, Dilantin is. Why in the hell won't they let me try the med that I liked again? Best of luck to u Danny YOU do whats right for YOU and dont let ANY doctors bully or talk u into doin something ur not comffy with. Ur in my thoughts Thanx Donna, I tried talking to my Dr about changing meds and he said, "We're this close to finding out if you can have surgery and you want to change meds?" I'm going to wait things out and see if the surgery option comes up and tell him I'm not going to do it unless I can try the med I liked. I've been trying to get off of this med for years and he said at my last appt that this was the first time I ever brought it up. I have copies of all my records from the past 10 years and went through them and highlighted everywhere it said, "Patient wants to change meds" and am going to take my record copies with me to my next appointment.   No seizures today, just more frustration.

[DonnaWanna]

QUOTE (Drumnut @ Mar 2 2010, 03:54 AM)

QUOTE (DonnaWanna @ Feb 26 2010, 08:45 PM) QUOTE (Drumnut @ Feb 26 2010, 03:48 AM) None today! I'm going in for my last test in the morning for possibly surgery. I'm am NOT going to consent to having surgery unless they let me try the drug I liked first. It's my decision weather or not if I want to let them crack into my skull!!! If they say they want me to have surgery, I'm going to insist they let me try Dilantin again first or I'm going to have to find a Dr who will, even if it means walking out of my Dr's office before I go through with having surgery. Surgery is the LAST thing I want to do. The drug I'm on now, Lamictal isn't even for the type of seizures I have, Dilantin is. Why in the hell won't they let me try the med that I liked again? Best of luck to u Danny YOU do whats right for YOU and dont let ANY doctors bully or talk u into doin something ur not comffy with. Ur in my thoughts Thanx Donna, I tried talking to my Dr about changing meds and he said, "We're this close to finding out if you can have surgery and you want to change meds?" I'm going to wait things out and see if the surgery option comes up and tell him I'm not going to do it unless I can try the med I liked. I've been trying to get off of this med for years and he said at my last appt that this was the first time I ever brought it up. I have copies of all my records from the past 10 years and went through them and highlighted everywhere it said, "Patient wants to change meds" and am going to take my record copies with me to my next appointment.   No seizures today, just more frustration. thats GREAT u have all ur old records! WTG Danny! i wonder what the dr will have to say to that once u show him all the highlighted sections! I can only imagine the frustration ur goin threw. Im glad u have the brain to know & do ur own research on this.   hang in there hun

[Drumnut]

Well, so much for that, had another doozie a little while ago. I was in the kitchen cleaning up after dinner and wound up on the kitchen floor. Seems like whenever I get 1 step ahead, I fall 2 steps back. I guess I better keep an eye out when it seems like things are going well.