Hi Dan,

Seemingly healthy people being blind-sided by a seizure followed by a brain tumor diagnosis is, unfortunately, a fairly common theme here. When I related a similar story to my neurosurgeon, he shrugged and said in his thick Swiss accent, “Thees ees brain tumor.” The good thing is that the tumors that cause seizures are often discovered while they are still low-grade.

I don’t blame you for being afraid of having another seizure, but don’t worry about your co-workers. Sometimes people don’t know how to react, but if you can educate some of your co-workers about what a seizure is (basically an electrical storm in your brain) and what to do* in case you have another, it should help everyone feel less freaked out.

Hopefully the Keppra will work for you; it’s one of the most commonly used anti-epileptic drugs, especially for tumor patients. 2,000mg/day is a fairly high dosage so you might have some side-effects, but they often go away or lessen after a couple of weeks. I’m on 1500mg/day and the only side-effect I have is sleepiness. Some have mood swings, irritability, depression, even “Kepprage”, but again, these usually lessen with time, but be sure to tell your doctor ASAP if you experience severe depression. Never quit Keppra suddenly, that in itself can cause seizures.

As for not feeling right, that’s understandable after what you’ve gone through. However, it could be the Keppra; it could even be the Keppra doing its job. I don’t know exactly what you mean by “not right”, but many people with epilepsy, tumor or not, experience auras which often precede seizures or are small seizures in themselves. These auras can take many forms, but many people report feeling like they are on the verge of having a seizure, but that the medication (this happens with other anti-epileptic meds too) is blocking the full seizure.

Another thing that may not feel right is mental focus. Most, if not all anti-epileptic meds work by dampening the electrical activity in the brain. That doesn’t mean that your thinking will be less clear or slower, it just means that you may need to focus more to do the same tasks you normally do. If I’m trying to do anything with math like simply adding up the bills while someone is talking, I have to ask them to be quiet. But then I’ve never been that great at math:/

The trip sounds great! You should still be able to enjoy everything as before, maybe more so after what you’ve been through. But, definitely be careful with alcohol. Some people are able to drink the occasional beer or glass of wine once they have their seizures under control, but alcohol lowers your seizure threshold so it’s tricky. Definitely talk to your doctor about it.


Talk about rambling Hope you found something useful in it.

Hope all goes well with your doctor on Monday. Let us know what you find out.

PS
*Basic seizure first aid
DON’T put anything in the mouth. It’s a myth that you can choke on your own tongue
If possible, turn the person on his/her side so that if they vomit they don’t choke on vomit.
Place something soft under the head.
Clear area of anything that might fall on or harm seizure patient.
Time seizure, if seizure lasts more than 5 minutes, or if there are multiple seizures in a row, call 911.

Hi Penny:

I really enjoyed reading your reply, thanks for all of that insightful information. For some reason I can not pull any information out of my neurologist. When I told him I was not feeling right he increased me from 1750 to the 2000. I do need to learn some more siezure basics. I will let you know how it goes Monday.

Dan

Went to see a neurosurgeon today. He wants me to have a Functional MRI. They did a MRI, a SMRI, EEG, CAT and he wants to do further testing before he makes a recomendation. I think he wants to determine to what degree surgery is possible without loss of any fuctions. He said that he would be the bus driver but that he needs to find right road. He wants the neurologist handling the seizure medication. Basically, he told me to continue with normal life except no high end exersize and of course no driving.

So I quess I need to sit back, relax and wait for my plan of attach to develop.

Dan

Thanks for the update



It sounds like your doc is being very cautious and thorough; that's great! But if your doc doesn't see a "road", you can always get a second opinion from a major brain tumor center. (Maybe you're going to one now?) Doctors who see bt's everyday can often see a way where others don't. Actually, it doesn't hurt to get a second opinion in any case.



Best wishes and keep in touch!

P.S.

Hope you're feeling better and that you are adjusting to the Keppra.

I too was on Keppra for about 1 year before my surgery and slowly increased to the max of 3000mg before being switched to Topamax. I had the same complaints that I felt like I "going to" have another seizure, but give it more time.

Here is another angle: What kind of lights do you work under? I am special education teacher and noticed that my seizures were happening more often at school under the fluorescent lights then at home.

Also, these anti-seizure meds do wonders on our bones and teeth...good idea to add in a calcium plus vitamin D pill now.

Hi Penny,
Just joined this blog. I'm a caregiver for my husband of 30 yrs. He's only 53, has Astrocytoma grade 2. Everything is new to me and I am scared of unknown. He is sleeping almost 90% today. Your reply about Keppra caught my attention. So I checked on my husband's and his is Levetiracetam 100mg/ml soln (I think this is Keppra) 3 times daily of 5ml each. Is his dosage quite low? if I'm reading it correctly as compared to 2000mg, etc. I am not sure if Keppra (which he's been on for a month, switched from Depakote ER to Valproic Acid) is causing his excessive sleepiness or that of brain tumor. I'm wondering if his excessive sleepiness is sign of his rapid decline? Or, taking Keppra this sympton of sleepiness is common?? My husband is unable to do any work now, as the tumor is affecting his memory and speech. Thank you.
Linda

Hi Linda,

It’s perfectly understandable to be scared, but you’re not alone in this fight. People here –the brain tumor warriors, their families, and the professionals who run the site – are all understanding and caring.

I’m certainly not a doctor of pharmacist, but I’ll try to help if I can. Yes, Levetircetam is generic Keppra, but the dosage and directions you give sound like they are maybe for the liquid form which, I think, is usually given to children. Anyway, it is confusing and doesn’t sound like the usual doses in pill form which tend to be from 1000 mg/day (500mg 2x/day) up to 3000mg/day (1500 mg 2x/day). (There is also extended dose which is taken once a day) I would suggest calling your pharmacist and going over the dose and directions with him/her. The directions on the label can often be confusing, and in some cases, there can be mistakes. If your pharmacist isn’t very helpful, I’d suggest finding another pharmacist. A knowledgeable, helpful pharmacist is invaluable.

If your husband is sleeping 90% of the day, that is worrying, but don’t panic. Keppra does cause sleepiness though I don’t think it usually causes that much. Depression can also cause sleepiness, and that could either be the Keppra or the diagnosis of brain tumor. As I’m sure you know yourself, it’s a lot to deal with.

Astrocytomas can be aggressive, but a grade 2 shouldn’t progress that quickly, so again, don’t panic. However, sleeping 90% of the day should be taken seriously whether it’s a side-effect of Keppra (which may go away or lessen with time) or depression, or the tumor. If your husband continues to sleep that much, I’d call his doctor. Remember, the doctor works for you and your husband.

Also, there’s a “Medical Information Specialist” page on this site where you can send an e-mail to a nurse who has a PhD and specializes in dealing with brain tumors. Go to the “Community” page and then in the bottom right you’ll see a link to “Medical Information Specialist” among others.

Take care of yourself as well as your husband. And let us know what you find out and how your husband is doing.

Hugs,
Penny

Thanks for the comments.

I have to think about maybe working in a 2nd opinion. I usually just go with the flow so it is against my personality.

The 2,000 keppra still going well. Only problem is that it seems to keep me up at night. I have no problem going to sleep but wake up after a couple hours and then very light sleep for a hours and hours. I do not think I am stressed out. If it is the Keppra, I hope this will just go away in time. This makes less energy during the day but I try to take a 45 minute nap at lunch. I am lucky to works so close to home so I have been taking a 45 minute nap for years so I am just continuing the routine. Only change being that I have to sleep at work on a couch since I can not drive home.

I went to the gym this past Sat and Sun so it felt good to get back in the routine. I was told no spinning or no other high impact exersize for now.

Going to see the nuerologist this friday to go over the seizure issues.

Have a good week!
Dan

Dan,

What did the neurologist say at your appointment Friday?

Jackie:

Nothing really new to report from the Friday meeting with the neurologist. He feels that the 2,000 keppra working well for me. For my lack of night sleeping, he thinks that I should work out more often and I can agree with that. OK with my vacation week in Mexico. He said that the keppra works real well but no quarantee against another seizure so use a lot of common sense. Overall I have to admit that I feel good. No other scheduled appointments, just waiting to hear back from the neurosurgeon to schedule the FMRI.

Dan

Today, we scheduled an FMRI for next Monday and Tuesday. I was told to be there on Monday 9:30 to 4 and then a few hours on Tuesday. Long amount ot testing. Anyone else go through this?

Hi Dan

Glad to hear that the Keppra is working for you and that exercise seems to help with side-effects. Really glad that your doc says the Mexico trip is okay! I love to travel and think it has lots of benefits for body, mind, and spirit.

Wow! Your fMRI is going to be quite time-consuming. I had one, but it was only to map motor regions; I just had to wiggle my fingers and toes, hands and feet. It didn't take much longer than a regular MRI. I guess you are going to be mapping areas of different cognitive abilities; I'm not really surprised that it will be so intensive.

I'm a little claustrophobic and so not overly comfortable during MRI's. But during my fMRI, the technician was talking to me, giving me instructions the whole time, taking my mind off the fact that I was in a big tube. I would imagine that cognitive mapping would be much more interesting than wiggling toes. I won't say that time will fly, but it probably won't seem as long as it sounds like it would.

Best wishes and keep us updated

On Monday, I spend the day (6 hours) doing a neuropsychology evaluation. I guess to see how stupid I am. Then Tuesday a Functional MRI (couple hours) and then I meet with a neurosurgeon to get his recommendation on Feb 24. Hope I hear the good news and then off to Mexico for the first week of March.

A six hour neuropsych evaluation...fun Mine was done with a speech pathologist and only lasted about an hour and a half because they had to squeeze me in at the last minute. It was a bit nerve-wracking, but also pretty interesting.

Hope all goes well! Keep us updated.

Washington University/Barnes Jewish Hospital gave me a 4 1/2 hour neuropsych exam as soon as I stepped (fell?) into their system .... then, almost to the day, 6 months after surgery, I was given the exact same test.
Exactly 6 months after second surgery I had the third neuropsych exam.

Each of the three tests was exactly the same as the first........ well, the third was shorter. They said they didn't need to test my IQ - they had it.

A neuropsyhcological exam is much more accurate than the general IQ test. It can tell us which region of the brain that we might be encountering difficulties.

Even with my twice-damaged brain, I still can 'fool' the general IQ test and get a pretty high score. The neuropsychologist (and a psychologist several years back) were able to give me more specialized 'batteries' (17 of them in mid 2009) to figure out my trouble spots.

Hi Dan,
Glad to hear things are going well. I was taking 500 2X when they first found the tumor, I had surgery 3 year later, oligodendroglioma WHO II, the meds were increased to 1500 2X day. 9 months after surgery I had 2 seizures 2 weeks apart, now I am at 2000.

Am feeling the affects, tired, no motovation and just feeling blah most of the time. It was 3 months ago yesterday - no seizures, yay for me, I see the Dr. on Friday. The nurse says he'll probably keep me from driving for another 3 months, so that's not what I wanted to hear.

As far as libations go, they dimminsh the effects of the meds. I think I over did it the night before both seizures and I didn't sleep well either, so I've tried to be a good boy since then. Becareful and have fun on your vaction.

All the long testing was basically all done to see if I am a good candidate for Awake Surgery. The testers were assuming that I was told that surgery is my only options, surprise to me. I will find out tomorrow (Thursday) as I meet with my surgeon.

Hi Runner: I have to agree with you. The 2,000 seems to be taking my energy. I was hoping to get used to it after a month or so. Need to push and a good night sleep would help me. I know that drinking, excess, on vacation not smart.

Thanks,
Dan

Dan,
I was awake during some of the drilling, I don't remember them asking questions but I was awake because of the location of the tumor (speech control). Take care and enjoy your vacation.

Met with surgeon today. Gliomas 1 or 2, not sure until surgery. He will know more after the surgery. He feels I am a good candidate for the Awake Surgery (15 people in the room during). The tumor is to close to speech area so makes sense for the Awake Surgery. Planned the surgery for the 2nd week of April. We agree to make sure personal/work in order before and OK to take my vacation. I pushed the surgery out a little to train a temp to do my job and let my boss get a two week vacation in before. I expected the surgery, did not expect the rad. and chemo. He though that I would be out of work 6-8 weeks. So not the greatest news, but I know it could be a lot worse. I am not going for a second opinion. I like this group and have a gut feeling that they are the ones. So we will see. A little worried about the whole process, maybe the rad. and chemo the most. Strange.

Best to all,
Dan

Hi Dan,

Looks like you've got everything pretty much organized for the upcoming surgery.

It takes some time to digest the news and accept the situation, but looks like you've already passed the 'denial' stage. I did not have a second opinion for my surgery, either, as the surgeon was the best and the only neurosurgeon in the region recommended by my neurologist. There was some insurance coverage issues because of the HMO/network situation, but eventually my boss was able to help me get a 'special contract'.

I remember how frightened it was to 'imagine' someone 'cutting' into my head. It gave me such a chill that I couldn't sleep well for many days. But gradually I cooled down, especially after finding more information about it. My surgery had been estimated to last 15-18 hours. But it eventually lasted 23... I also had to undergo speech therapy besides physical therapy and occupational therapy. This summer, I will celebrate my 21 anniversary...

I did not have chemotherapy after my brain tumor surgery. But I do have experience (twice) with chemo for breast cancer. It's doable, just remember to rest well and drink plenty of fluid.

Sending you good vibes.

Jackie, thanks for the vibes. My surgery planned for April 12th, I will update after that. Glad to hear you are doing well after all you went through. Again, thanks for the info. Dan

Hi Dan,



I wanted to wish you all the best for your surgery on the 12th. I'm sure all will go well, but I would imagine you're a little nervous right now. Just know that we will be thinking about you.



Don't worry too much about chemo and radiation, you may not need both. If the tumor is low grade, and especially if it tests positive for the 1p19q co-deletion, your doctors may go with chemo alone and save radiation for possible future recurrence. The 1p19q test is a genetic test and is often done off site - mine went to the Mayo Clinic - so you may not get the results at the same time as your biopsy report. If you test positive for the deletion, it means that the tumor is more likely to respond well to chemotherapy. If the 1p19q are still intact, it doesn't mean you won't respond to chemo, it's just that the deletion is associated with a higher probability of success.



Anyway, I can't tell you about radiation, but I managed chemo pretty well. I was, like you, almost more worried about treatment than surgery. I did chemo for a year, 5 days of Temodar out of every 28 days. I didn't have much trouble at all the first 6 or 7 cycles, after that it became progressively more unpleasant. BUT it was never as bad as I had imagined or feared -just some nausea (no vomiting thank goodness!) and fatigue. If I can manage, you can! I can deal with pain, but nausea turns me into a big baby. Actually Temodar, which is the most common chemo for BT's, is relatively mild compared to other chemo drugs. Some people experience almost no ill-effects at all.



Again, sending you best wishes and positive thoughts for surgery! Let us know how you are doing when you feel up to it.



P.S. I hope you had a nice time in Mexico

Hello, Nice to hear from you. A CHANGE. Might has well go over to the thread/link: Gliobastoma IV grade / Dan-Grade !V (MRIs didn't show up the 1 t0 2 Grade).

Dan,

Ted here (Grade IV GBM - surgery 6/15/11). How you doing? I am wondering about going back to work following this initial cycle of chemo/radiation. Looks like you were working?

Cheers,

Ted Hoyt