I was diagnosed with a partial complex seizure disorder in the mid 1980's and placed on Tegretol and Phenobarb....it was great, no more weakness in my right arm/leg as the day progressed etc. After about 5 years I weaned off the meds.

I've noticed over the last couple of years or so different auras such as terrible smells etc. and flashing lights that drive me nuts. I also will be talking to someone and less than a minute later pick up where I left off if I was talking or if they were, I'd "miss" what they had said in that intervening time.

Finally saw a neurologist who tried some trileptal (allergic). Finally put me on Carbatrol altho he was very unhappy about it as it's an older drug. I won't go into the problems with that when he tried to increase the dosage.

Tried a new neurologist who obtained an EEG and it was abnormal...sent me for an MRI to r/o medial temporal ischemia...I didn't have it which was just fine with me. I also had problems with Keppra and she wouldn't try lamictal as she's had patients who have had problems with it...so she started me on Lyrica and over 2 months it's up to 100mg twice daily. I don't like it. Oh, about a year ago finally got a Tegretol level which was fine. A year ago! No one thinks that's strange.

I'm tired...I do have sleep apnea..and use BiPAP...but lately have been having such weird vivid dreams that have never occurred before.

I get to see a neuro only about twice/year because my fairly large metro area has a dearth of neurologists and she works only twice/week....and now I was called and told my appointment that was scheduled on the 20th has been moved because she just won't be in that day. How nice...AND they try to make me feel guilty because "she's making time on her day off to see you."

I'm so tired I can't stand it.

Thanks for listening.

Kandra, big question ....
Is there any way at all you can make an appointment in the neuro dept. of a university hospital? Even if this would mean some travel, if possible, it could mean so much to your health.

I was diagnosed with epilepsy in 1990 and, like you, went through so many different medications, so much trouble, and I went slowly but steadily down hill. I saw different neuros and thought I was getting the best possible care.

In 2005, an MRI sent me to a huge university hospital (which I dreaded) and WOW, I received great treatment.... the very best epilepsy treatment available.

No matter what is causing your epilepsy they can help you. I hope this will work for you.

Hi Wren...

Thanks for the reply Well, I know the mesial temporal sclerosis is out and my MRI was "normal"....but my EEG certainly wasn't.

As for the University, yes...there's one here. However my experience with them in the past for other issues I'd have liked for them to have looked at is: We're not taking new patients. But hey, one never knows...maybe the neuro dept. is

Kandra, Whats wrong with trying Lamictal? It MIGHT help. You see, I started it back in 1996 & have never had another GM (tonic-clonic). I take Lyrica too, but that one does not help me with my CPs (it might help you though) We are all different.
I have an appt the 20th and hope they don't cancel mine. This is at a university hospital. I have been going there for years.

Kandra,

Sorry to hear of your problem. I will agree with lori, what is wrong with Lamital. Because what doesn'T works for some(her other patients), may work for you. I have been on lamital a good number of years and it has help me. I am also on Keppra, and both of them have been deceased sense I started taking them.

Try have find a new neuro, one that will listen to you. It took years for me to find one.

You are in my thoughts and prayers. Also we are all here for one another.

Darlene

Hi Kandra -- We hope to 'see' you again soon.
Like Lor and Darlene said - you can certainly try Lamictal .... each med affects each one of us so very differently. I took Lamictal for a long time and it had no ill effects on me .... it didn't help but it did not hurt in any way. There are many AEDs available and many dozens of combinations.

The university hospital I depend on so much is very busy too (and it's crammed ... over crowded) and you wait and wait for an appointment. The care is worth it.

I am so disappointed to hear there is one that has closed its doors to new patients. I wish you could find another. We here will be holding you in our hearts and prayers .... wishing you the best.

Hi Kandra,
I'm sorry you are having a hard time with finding the right AED's and neuro. I've been on at least 13 different AED's and then my Epileptologist did a DNA blood test on me to find out I was drug resistant and that the best meds for me to take were Diamox and Mysoline. Just like you I have complex partial seizures and absence sz. I often will smell odd odours like natural gas, rubber, or deviled eggs this is known as an aura sz. This will often happen right before a cp sz. where I see lights flashing back and forth in my eyes. My Dr. told me to tighten up my muscles and make my hands into tight fists by doing this it stops the sz. It surprises me that you were allergic to trileptal but not tegretol the 2 drugs are so similar I was allergic to both of the drugs and then the dr. put me on lamictal and I broke out with a wicked rash from the drug and that may be the reason why the dr. didn't put you on the drug because there's been a lot of people who broke out with rashes from lamictal. I'm sure you know sleep apnea and epilepsy are linked together and it's probably the sleep apnea that has caused your epilepsy. Take my word when I say you can live without part of your temporal lobe when I had surgery a few yrs. ago to reduce my sz. they removed 75% of the right temporal lobe and all of my right hippocampus and I'm doing fine. I found that doing word search puzzles and math better my short term memory. Here's wishing you well and May God Bless You!

Sue

Hi lor,

She won't give me Lamictal...says she's had too many patients have serious problems with it...Stevens-Johnson, I believe. My appt. is tomorrow and I'm pulling my hair out here.

Also, I had tripped and seriously knocked my noggin 9/30...no LOC but severe headaches, and I'm not prone to headaches. My INR was very high at 5.3 and she refused to see me (that's a very high result for those of us who take Coumadin..my blood was VERY thin!). I did get a MRI the following week (finally!) but that had already been ordered to r/o the mesial temporal sclerosis. (Yes, I did go to the ER but after waiting several hours I went home) I even lost my way home! Anyway, headaches have gone but I've been having short term memory problems since...and I can't tell her because my pulmo is already murmuring....neuropsychiatric problems. Jeez, I had a freaking head bump, I didn't acquire Alzheimer's in the process.

I find myself in the kitchen and don't know why...etc. I forget almost everything it seems and it's really annoying to say the least.

I did call the university here and I can't get in for a minimum of 6 months

K.

Thank you soo much, Darlene....! It's just impossible to find neurologists here...most have left the state. I'm still even trying to find a decent primary.
I want to move so badly but don't have the resources to do so

Thanks!

Now I can wait 6 months for an appointment, however they wouldn't let me make it?? How strange is that.

Thanks so much!