Epileptic Survivors

WAKEPBCS

Looking to communicate with others who have epilepsy and have gone through the surgery and treatment, experiences, emotions, challenges . I haven't found anyone yet.

Held

I have epilepsy also.  Where are you in your treatment?

WAKEPBCS

I haven't visited the site for a week or so because there has been no response from a breast cancer survivor with epilepsy for some time.

Its great hearing from someone dealing with the same challenges. 

 I have completed my radiation and have been on femara for a month with zometa infusions every six weeks. How bout you?

After trying several different epilepsy medications with no luck and seeing a neruoligist for two years (only one of three in our state), I finally went to the Mayo clinic and they put me on Lamictal. I have to keep increasing my dose, but it sure has decreased the number of seizures.

When were you diagnosed with eipilepsy? 

What anti-seizure meds are you taking? 

The worst thing for me, besides living with both is the loss of my independence --not being able to drive. And we have no public transportation-or bike/walking trails here.

What's your biggest challenge

WAKEPBCS

Breast Cancer plus epilepsy?

Held

I haven't had fun with this either.  My doc had to adjust my meds a lot.  I get seizures when I am on antibiotics, so my meds had to be increased while I was on them and then for a bit afterwards.  I had my last surgery on 7/25, and on Sunday I was finally able to bring my med dose down to normal.  I take Lamitcal too, and I also take keppra.  The lamictal doesn't work by itself, and the keppra makes me fat, so the doc has me on both to keep my weight neutral.  How much lamictal do you take?

When was your last seizure?  What kind of seizures do you have?

I have had epilepsy since I was about 13.

WAKEPBCS

Good morning:

Wow--just when you think you have it bad, there's always someone who has it way worse than you. Sounds like you have been through quite a lot--breast reconstruction? I can't imagine.

When I had surgery, I was supposed to be going in for day surgery and go home that nite.  Riiiight. After I started coming out of sedation in the recovery room I starting heaving and heaving and was totally out of it for at about five hours before I slowed down enough for the surgeon to send me to a room and stay overnight.  Suffice it to say the hospital staff treatment sucked.

An-call neurologist (new to the state) came to see me, give me the standard - how many figers do you see and count backwards and sent me home. We tried all kinds of pain meds with absolutely no luck (kept heaving) so finally went to advil pm. At least that helped me cope.

I take two doses of 300 each day -am and pm--total 600. I was diagnosed with Epilepsy two years ago in November when I had a grand mal. I was still  having seizures with the Keppra-totally out of it--and one more--They couldn't find any reason for them in my state so like I said I went to Mayo clinic and they found a mass in the left side of brain, from a fall off a swing when I was in second grade.  The more I talked to my surviving family members they remember me having a few more (they didn't knoww what they were--ignored the possibility is was epilepsy all those years) and for some unknown reason something just exploded.

We have tile floors in a large part of our house and when I had my first--of course I broke my nose cause I went face down--the second one when I fell out of my at home office chair--not pretty either. After being on Lamictal for six months I've gradually the number and severity of the seizures. I've had "minor" black out seizures until about July of this year--and they have gotten less and less--each time- but I can't go for two years without one--to accomplish the required six months before I can drive again.   And I definitely wouldn't want to--and unfortunately can't drive my grandkids anywhere and have to depend on my husband to go anywhere.

Really gets to me--because I am very isolated -for example right now when its opening day of moose season and all I can do is walk around the neighborhood.  I really am thank full I can do that though.

Have you found any oncologists, radiation or chem folks that know of patients like us who have both?

Whew! enough for now--and I know the long (and I mean long winter days--maybe four hours of light from about end of November to March)

 But as I said at the beginning, my challenges are definitely so minor compared to yours. I would defiinitely like to know more about your seizures- and how you deal with them along with all the challenges of having breast cancer.

Held

Ahhh, adventures in seizures!  I have "staring spell" seizures, usually, but extreme circumstances will induce a grand mal.  My body is really sensitive to medications, so I am very nervous about taking anything.  I can't take tylenol/advil PM or any kind of cold medicine because they will induce a seizure.  I had a bad one while I was being treated for pneumonia several years ago and had a grand mal while holding my daughter.  I dropped her, and hit the table I was sitting at.  I broke my nose and my back, split my top lip and cracked a tooth.  My last bad seizure was in July, which seems to be related to a bad batch of seizure meds (manufact. looking into it) and I broke my finger.  My 6 year old was there and told me later she thought I was going to "get dead".  Lovely, huh?  The manufact. of the med sent me some directly, and I have had no trouble since. 

I didn't have chemo or radiation, just the double mast.  All my docs communicated with each other, and worked together to make the best choices for me.  Most of my docs would talk directly with my neuro if there was a question about treatment, but I would also check with her before I did anything. 

Since I am so medication sensitive, my neurologist advised me that a bilat would be a better choice because she was concerned that the tamox would cause uncontrolled seizures.

Why would you think I have it worse than you?  Sounds like you are not having much fun either.  Have your docs considered adding another med?  Are you having any side effects?  What other meds have you been on?

WAKEPBCS

Hello again. Hunting season is about over and we now have processed meat in our freezer.

How's everything going with you right now? You said your surgery was July 25th? So its not even two months yet. How is your healing --lots of pain?

You had asked me about other meds?  I was on Keppra-no effect--then Trileptal-total zone out and about 25 pound weight gain. Lamictal seems to be doing fine--except for having to increase doses every 2 or 3 months--Still have minor seizures at night. So no doctors haven't considered any other meds.

Now that I am on femara and have had one Zometa infusion-I don't know whether these so called side effects are because of the combination of these with Lamictal or if its those themselves--but one thing I have noted is a very very dry scalp-almost like a scab around the entire head. And    my stomach is really big compared to what it used to be.  I haven't gained any weight--staying the same for about 8 months (after getting off Trileptal) but the fat rolls are really increasing around the middle.  Of course that could be something as simple as no exercise-  At least I do walk about 45 minutes a day.

How bout you? Do you do any exercises to strengthen the body? I really need to figure out some to do.

Tell me more about you-- do you work, are you allowed to drive? Did you go to a dentist for your cracked tooth?  I cracked mine too and they wanted to extract it, but oncologist said no way--so they are going to try and insert a brace behind it so it pushed the tooth up and out, gradually. Sounds like fun.

So you didn't have any radiation or chemo? You are on some kind of estrogen or infusions -or some follow up?

Do you go to the epilepsy web site?  I went there a while ago and posted a question there too if anyone had epilepsy and breast cancer.  No responses yet.

Take care

Held

I am sending you a PM

THIA55

People with Epilepsy I would prefer .  Guess that there are not many of us about . How are you doing now.  I have just had wire guided wide local incision and waiting for results to see if I need more surgery.  I am concerned about effects of treatment on my epilepsy been on meds since I was 13.  Ido not have seizures at present but if I did it would be a bad one so do not want to take risks. Also liver function is not great. Won't know till  a week Friday next stage. They are talking about radiation etc.

apple

I am glad to have stumbled upon this thread.. I've only had 2 seizures, one small and one super GRAND... and may or may not be epileptic.. I am not really sure how that is defined.

They found a meningioma.. perhaps from a severe fall I had as a child.. it's right under my forehead scar.. non malignant.  Anyway, I am on a lot of Keppra which I do not like at all but hay, that's life.  Best of luck to you all.. I'll be checking in.  I am still restricted from driving but the months are passing.

Held

I did not like Keppra either.  My doc swears it is supposed to be "weight-neutral" but I gained weight on it.  I am not on it anymore, but more than likely will have to go back on it.  I wish there was a magic pill to deal with the tiredness I feel all the time. 

THIA55

Yes medications for epilepsy have sooo many side effects.  i wish i wish there was something else i could take for my epilepsy I have been taking phenetoin now for 43years. it reacts with everything. I too feel tired all the time. No wonder why my liver is not working vey well and possibly these meds we have too take could have given us our cancers!! 

it is not easy that is for sure.  Wishing everyone strenth and love. 

Held

I know you are going to think I am crazy, but I have an appointment later this month with my neurologist.  I am going to ask her about the Ketogenic diet.  I know it will be a lot of work, but it's got to be better than frying my liver and ruining my bones, right?