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

Sue,

You've got it exactly right why she won't try Lamictal. I do know that Tegretol and trileptal are similiar in chemical makeup, but it's possible that the fillers etc. in the Carbatrol are helping to curb a reaction. I also know Tegretol is an "old" drug not much used but it IS the one that was originally used which worked...even though no one wanted to put me back on it. I used to take Tegretol and Phenobarb but she won't give me the Phenobarb.

I'm not sure what other combinations she would use. I dont feel the Lyrica helped whatsoever and am not interested in increasing the dose.

I didn't develop the sleep apnea until a few years ago..my E developed before that by around 15 years...but yep, know it doesn't help. At the sleep center they told me they didn't see any sz. activity but I believe they only monitor 2 or 3 leads.

She did indeed mention the surgery but I think she's only thinking that would be an option if I had a positive MRI for the med. temporal sclerosis. What are the criteria for the surgery??

Thanks!

Hi Kandra,
Before I had brain surgery done I had to go through a lot of tests. I had an MRI, CT and Pet Scan, e.e.g., Wada test, Spect scan, visual field tests, along with neuropsych. tests to be sure I could handle the surgery both emotionally and physically. I had ultrasound surgery done where you have to stay awake during the surgery except when they cut into the skull, they put you out for that but in many cases the patient will wake up before they are done cutting and that's what I did. I was in the hospital for 10 days after surgery. I couldn't lay on my right side for 6 months nor could I get my head wet for 6 months. The worst part of the surgery for me was getting 5 shots across my forehead for the local anthesisa to go into my system and then they put 42 staples in my skull and when it came time to pull them out it hurt like crazy. Today a person can have gamma knife surgery done this type of surgery is a lot safer and much quicker. The Dr. pinpoints the area of the brain triggering sz. and then they will drill 4 small holes into the skull to put a special helmet and then they wish high frequency radio waves and radiation to destroy the area causing sz. many people go home the same day they have surgery. some have to stay overnight if they receive to much radiation or if there are any problems. Here's wishing you well and May God Bless You!

Sue

Wow, Sue....!!! You sure had a rough time after surgery...and during! I did ask her today about surgery but she said it's difficult to do on patients such as I who probably do not have one specific foci. She told me no bleed or temporal medial sclerosis on MRI...then casually mentions that I had a few white spots in my white matter which sent me off into a tizzy! I said I've had STROKES?!?! (She forgot she was talking to a RN) and she said no no, common for people my age (I'm 53) plus diabetes (I don't have diabetes) or who have coagulation problems (that I do have but am on Coumadin). She told me they were punctal, meaning pinpoint and were nothing to worry about. Well, why bring it up then? She highly regretted saying anything...lol. We're getting a followup CT because of the head injury to make sure there wasn't a very slow bleed...I told her I was having short term memory issues.

She started me on Topamax (along with the Tegretol XL)(I asked to be switched due to amount of copay from the Carbatrol). She also told me not to be drinking water all the time due to low sodium caused by Tegretol but to drink items containing electrolytes. I don't know of any that don't have calories also...and she wanted to make sure I take enough Calcium and Vit. D.....I was happy she seemed to be on top of those type of problems that can so easily occur. I do have a history of kidney stones and the Topamax can cause those. I sure hope I don't have a problem with it.

Thank you sooo much!!!

Hi Kandra,
I know the surgery and all the detail seems like a lot but take my word it was well worth it in the long run I used to have an average of 300 sz. a yr. this past yr. I had 114 sz. and a few of them were just aura (simple partial sz.) I'm no Dr. but take my word those white spots your Dr. saw could be scar tissue that's what they found on my Right temporal lobe and that was the cause of my epilepsy. I don't like the idea that your Dr. told you to cut back on the water and that you should drink beverages with electrolytes
it's the electrolytes that can trigger sz. for a person I found that out the hard way when I used to drink diet soda and I found that the nutra sweet caused more electrical activity in the brain which caused sz. for me. I've found drinking cranberry juice and taking calcium with vitamin D a big help. You also might want to try taking vitamin B12. When I was on tegretol I got kidney stones 2 times and it was no fun. A few yrs. ago I took topamax and was on it for about 1 month and had to go off the drug because it caused me to have many more sz. I had 23 sz. in just one month which is sky high for me. I found topamax wasn't that strong of a drug. You might want to look into taking mysoline and diamox like I take. Diamox is a diuretec which helps get rid of the extra fluids in a persons system that can cause sz. and Mysoline has been around for many yrs. this drug breaks down into phenobarbital. I've found these 2 drugs the biggests help for me. Here's wishing you well and May God Bless You!

Sue

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

Thanks so much!

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!