Tired of this...
 

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. :hug:

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 :)

:hug:

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.

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 :o 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. :hug:

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.

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

Thanks so much!:hug:

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! :hug:

Surgery
 

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!!! :hug:

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

Hi Sue,

Evidently, from what she said, the small amount of white spots were in the white matter...and could be caused by HTN etc....I could swear the woman said "punctal" but I can't find anything for that on Google other than the punctal plugs they put in people with dry eyes (which I have..lol!) I've been a bit freaked all day thinking it's possible those are tiny little strokes or something, sigh. First she said they kind of were then backed right off of it.

It's interesting that tegretol caused kidney stones for you because Topamax is fairly well known to do just that :( I have a history of kidney stones too...ergh. Actually it was my suggestion to try the Topamax as I knew she wouldnt go for the Mysoline as I'm still weaning off Klonopin. I haven't started the Topamax yet because of other information someone sent to me.

I don't like things with Splenda due to the GI effects it has on me...and she knows I'm on a diet and I HOPE what she was thinking was maybe Propel. I have tried it once...it was ok. She knew I wasn't going to drink anything with calories in it. I know she was a little concerned about my borderline low sodium, which Tegretol causes...that's why she didn't want me to drink only water...to further dilute me down, so to speak.

I had seen before you mentioning B12 and did start that a few days ago.
I had been taking Tums (a cheap calcium!) and Vit. D but had slacked off...but did resume it again a couple days ago.

I think I mentioned she wasn't wild about any surgery because she didn't feel my sz were from one focus. In the future maybe a VNS if things don't get under control. Then of course any med etc. have to be careful with due to the Coumadin.

I'm just tired of this...really am. I appreciate so much you and everyone else here...thank you!!

Hi Kandra,
In regards to the vitamin B12 I take 1000 mcg. a day, I know some other people just take the vitamin B complex vitamins and that helps them also. If you are on a diet you might want try the ketogenic diet. This diet is used for epilepsy, it can reduce or stop seizures. The diet is high in fat but low in protein, carbs. and starch food. I lost 75 lbs. on this diet in just 4 months. The diet builds up ketones in a persons body which reduces and in many cases stops seizures. The ketones also curb a persons appitite. If you are interested in this diet you can get the book by Dr. John Freeman whose at Hopkins University the title of the book is: "The Epilepsy Diet Treatment." This diet has been out since 1927 my cousin was on it during World War II and he had tonic clonic sz. While he was on the diet he flew airplanes and he never had a single sz. until he went off the diet and tried medication. If you're interested in this diet you can see a dietician and they can get you started on the diet. Here's wishing you well and May God Bless You!

Sue

Hi Sue,

I take the Vit. B12 1000mcg also...sublingual. I'lll have to investigate the ketogenic diet...I thought it was mostly for children. High ketones are also caused by high protein diets. I'm on just a "reasonable" diet and I've lost 108 pounds in 8 1/2 months. Have you been able to keep the 75# off once you went back on a more normal diet?

My insurance doesn't allow one to actually see a dietician...the most I can hope for is a phone consultation..sigh.

Thanks again so much!!:hug:

for those with
 

a history of kidney stones...

The better choice of calcium is calcium citrate.

http://courses.washington.edu/bonephys/opcalcium.html

The reason for this is complex, and mostly has to do with
oxalate formation, not the calcium per se. The citrate form
lowers that risk.

Thanks, mrsD...I'm a bit overdue for getting one and obviously need to minimize the risk!!

Hi Kandra,
The ketogenic diet started in 1927 before there were a lot of AED's for sz. kids and adults were on the diet. Today they have a lot of kids on the diet but more adults are going on the diet also and they are taking less AED's. Since I lost the 75 lbs. I've kept the weight off with no problems. I was more worried about my cholesterol and clogging the arteries with this diet but I was surprised to see my cholesterol level is much better and there's no clogging of the arteries. Take my word if you like cheesecake you will love this diet. My insurance refused to cover seeing a dietician also so after I bought the book "The Epilepsy Diet Treatment" I understood how to do the diet and I'm on a 4:1 ratio 4 grams of fat for every gram of protein and it works great. If you get the book and read it you'll find all the detail about the diet. Take care and May God Bless You!

Sue

Thanks, Sue :) Sorry for my delay in replying...between BD's (depression time!) MRI's etc. haven't been online. I'll have to get the book and look it over because to be honest that type of diet sounds somewhat unhealthy..or what we're told is unhealthy!!

Hi Kandra,
I hope you're feeling better depression is part of the epilepsy take my word. If you do get the book the author is Dr. John Freeman from Hopkins University. I know the diet sounds unhealthy but take my word it works great stopping sz., lowering cholesterol, and it doesn't build up plaque in the artieres because you burn the fat for energy instead of using carbs. and startchs. Here's wishing you well and remember there's always someone else out there in the world that has life a lot more rough than you and I. Take care and May God Bless You!

Sue