Daughter of recently diagnosed epileptic Mom=)

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I am the daughter of a mother who was recently diagnosed with epilepsy (complex-partial onset) in October 2008 after 2 known seizures and an EEG done my neurologist where they could see the seizures. My mother has been superwoman her whole life and devoted the past 23 years to being and providing for me as much as she can. Her career required a lot out of her as far as time and traveling and since 2006 had increasingly become more stressful for her - begining of last year 2008 she was under the most stress in her life(gradually and noticeably increasing since 2006) - knowing she was going to have to leave her career due to corporation wanting too much from her (move to another state after 20 + yrs and working non-stop-more than 50hrs) also, she decided a separation from her recently retired husband is what she needed as well(my stepfather - great guy - great dad to me the past 20 years!) and she believed that once she got those stresses out of her life then she would be better health wise - her body held off until the latter of last year and she got sick durring a flight for work, then was unconscience and once on the ground immediately taken to hospital - where she had a seizure - we believe it was a seizure on the plane as well - but the hospital did not want to log it as a seizure since witnesses did not see her tremor/ shake / what that doctor thinks of seizing. They did a MRI , catscan and EEG - all came back clean and thought that it was because she had 1 alocoholic drink on the plane? - I don't know why we accepted that answer then besides the fact that my mother does not drink that often and it had been a while since that drink. A month later she resigned from her job on amicable terms and separated from her husband. She had another seizure couple weeks later while in Ohio packing her things. She was hospitalized and a MRI and catscan were done - they both came back clean. When she got back to VA we went to see a neurologist and he prescribed her 200mg of dilantin - said she could take generic if necessary - since then she is now taking 500mg of Dilantin(has to be name-brand now- b/c her body was not absorbing generic well) and finally her level is at 12- after today's consult with neurologist he has prescribed her Keppra as well to be combined with the Dilantin. Today was very bad day for her as most days have been since October - I've spend hours,days, months questioning the medicine and her doctor because I am just not use to seeing her this way and seeing this destroying her physically and emotionally - today she started have the shakes really bad, most of her bad days consist of her feeling nausea (Neuro today said she needed to ensure she was eating properly throughout the day) , dizziness, pin needles in her feet (side effect of dilantin) but she is constantly struggling with her memory and holding a conversation, slurring speech...etc.... he scheduled her to have another EEG tomorrow - prior to today ive seen that a lot of people have these symptoms and are associating them with Dilantin - her neurologist however , is stating that the dilantin should not make her non-functionable so there must be something else going on. That is where we left off today. This site looks like a great site for me and my mother - It is nice not to feel alone! Thank you to whom ever started this site=)
 
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welcome to the site

First of all welcome to the site.Was your daughter having side effects from medication prior to starting the Keppra? Is she still having seizures? It's unfortunate that you guys are experiencing so many adverse side effects. I've had times where I've been shaky but that always lead to seizures (tonic clonic). I don't consider myself an expert by any means but it sounds as if she is highly over medicated. I don't personally have any experience with the neurofeedback and special diets (nor am I interested) but this actually sounds like a case where you may want to consider some other alternatives seriously-There is no quality of life when you can't hold a conversation and function normally on some level-i mean to have a bad day is one thing but to have a bad year is another...You should touch bases with Robin (another parent on the site and read Rebeccas story). This is a wonderful site for information and just a sharing of ideas and experiences.

Good Luck-
God Bless
 
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Sheilabear17,
I read your post, your mother was just recently diagnosed with epilepsy, I am sorry!
seizures are not fun for anyone, and I do agree with misseschris is does sound like she could be over medicated, are the neurologists doing drug interaction checks, and are they doing labs? I would also go and get a second opinion.
I have had Epilepsy since I was 2 years old and I am 46 now.
I had a heat stroke, and fell hit my head and had a bad head injury.

you and your mom & family are in my thoughts and prayers.

Shonni
 
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drug interaction

I would have said drug interaction but one of the benefits of Keppra is that it has no known interactions and can act well as a secondary or mainline AED because of this.
 

epileric

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Actually....

I know keppra to have interactions with other drugs though I don't think dilantin is one of them.
Major Interaction Major Interactions
Darvon, Darvon-N, GHB, PP-Cap, propoxyphene, propoxyphene hydrochloride, propoxyphene napsylate, sodium oxybate, Xyrem
I couldn't link to my search but type keppra in the search box. The list of moderate interactions is veeery long.

http://www.drugs.com/drug_interactions.php
 
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BuckeyeFan

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:cheers:

Welcome to our house. I am not sure, but you are among very few members here to support a parent. I am sure you bring a whole new perspective to the issues.

My first thoughts reading your message was that you need to be sure that there are no other issues with your Mom. Don't let the doctors just lump it all into the epilepsy umbrella.

It may take some time to find the right meds. It seems like everyone reacts differently. I have had pretty decent success with dilantin (yes, stick to brand name). That level of 12 is on the low side and may not be effective. Been on dilantin for 27+ years. I was also on keppra for the last 5 with success (no tonic-clonic/grand mal seizures), but recently switched to lamictal due to side effects.

I understand the stress of caring for a parent. My Mom is doing pretty good now, but last year had 3 surgeries, breast cancer, and depression. This is quite a strain at times. Let this be your place to get away when you can as well as for info.

:cheers:
 

skillefer

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Hi Sheilabear! Welcome to CWE. This is a great place to ask questions and get some answers. I'm on dilantin right now, and have noticed that I trip over my tongue a lot more then I used to...and that I sometimes have to search for words... Being diagnosed as an adult is not that uncommon, so don't be worried there. As for meds, they work for about 60-70% of people who are prescribed, but sometimes it takes a while for the docs to find the right combo. Just wondering... by any chance did your mom start going through menopause, or is she ready to? If so, her seizures might actually be tirggered by her hormones. If that's the case, then adding a hormone cream might help control the seizures. To find out, I'd have her request some blood work....have them do a full blood test checking for all her homrone levels, including thyroid, as well as her vitamin adn mineral levels in her blood and a blood sugar test. Her doc is right in that she needs to make sure that she's eating regularly and healthy. I usually advice 6 small meals a day (small as in will fit on a dessert plate, and for every carb some protein). Low blood sugar can trigger seizures. Also, she needs to stop drinking any caffeine...so no more coffee, tea, mate, sodas, or energy drinks. They are stimulants and will work against her meds. Also, she needs to make sure that she's getting at least 7 hours of uninterrupted sleep each night, and that she has a healthy way like yoga, meditation, prayer, art, writing , etc...to deal with stress. It might help her doc if she kept a journal...here's what I usually suggest that people keep track of...

1. Food and drink (how much, what, and when)
2. Sleep (how many hours uninterrupted)
3. Stress (illnesses as well as physical, emotional, and mental stress and what she does on a daily basis to deal with it)
4. OTC meds and supplements (what she takes, when, and how much)
5. odd feelings (migraines, odd tastes/smells/feelings/sites/sounds, etc...when and how long they last)
6. Seizures (when, how long, what it looked like, where she was, and what she was doing prior)
7. Her period (the first day of each period as well as how long it lasts.)


All this info will help the doc figure out if there is something else going on. It's not unusual for us to have normal EEG's...so don't be surprised if that's the case. Heavens..I've had seizures over 30 years and had only 1 abnormal eeg. The other reason for the journal is to try to figure out what is triggering your mom's seizures. We're looking at diet, exercise, stress, sleep, flickering lights, and hormonal reasons primarily. so after a week or so, have her go back and see if there's a pattern. For example, does she get the shakes only after she's been in a place with flourescent lights? did you notice if the neuro had a flickering light in his office? Does she use those new lightbulbs that are twisted in shape? (those are known to trigger seizures in people who are photosensitive).Low blood sugar, low thyroid, hormonal fluctuations, etc...they're all known triggers. If she can figure out what her triggers are, maybe she can avoid them. As for diet, as I said, 6 small meals and no caffeine. She might also consider shopping the perimeter of the grocery store and trying to avoid all foods that have additives and preservatives in them. Some people develop sensitivities and their body reacts by seizing.

I know it seems like a lot to do...but your mom still is the vibrant woman you grew up with. And the sooner she grabs the bull called epilepsy by the horns, the better. Don't be surprised if she get a bit depressed at first. It's not easy changing our lifestyles. Giving up driving is especially hard. But by keeping the journal, and making any lifestyle changes that she thinks might help, she'll be taking a proactive approach, which just might help. I hope this helped. Feel free to ask questions, chime in, or vent in the padded room as needed.
 
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thank you for your posts - I cannot express how much this site can really touch and give hope and advice to many in need. CHerokee- since the diagnosis (after seeing seizures from EEG in October) she was prescribed 200mg initially - then blood work was done showing her only at a level 3-4 , so neurologist increased dosage , this process continued ever 2-3 weeks (4 weeks durring xmas) until 3/4/09 blood work showed her at a level 12 (which neurologist said was on the lower end of the spectrum - 20 + being toxic level) so yesterday he said she was not over-medicated b/c her level was only at 12 - today she is having another EEG today b/c the neurologist needs to ensure she is not still seizing (which he feels may be causing the on-going effects she is feeling/showing) if the EEG comes clean - he also said it could be from anxiety which she is already and has been taking Lexapro for - since early 2008 - she had taken Lexapro for 6 months in 2006 when she was under a lot of pressure from work and was able to wheen off of it(with PCP's support in doing so) and handle the stress- early 2008 she got back on it b/c of all the stress from work and going through a separation. We will find out what road to travel after results from EEG today
 
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Thank you BuckeyeFan - i may come to you in the future since you are taking the same meds my mother is now on. I am sorry to hear of your mother's struggles-Ive learned how hard it is seeing the ones you have always looked up to suffer and struggle- my heart goes out to you and your mother. Thank you for your advice I know after her EEG today (so long as it does not show seizures) that is another road we need to travel again more thoroughly (her prior medications). Again. Thank you
 
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Skillefer- thank you for all of your recomendations - they are really helpful - once again- I will be comming to you in the future as well - thank you for all of your words i cannot say enough how your words can hit home!!!!! I continue to keep my head up and stay focused and positive - thank you again!
 

Bernard

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Hi Sheilabear17, belated welcome to the forum. :hello:

... today she started have the shakes really bad, most of her bad days consist of her feeling nausea (Neuro today said she needed to ensure she was eating properly throughout the day) , dizziness, pin needles in her feet (side effect of dilantin) but she is constantly struggling with her memory and holding a conversation, slurring speech...etc.... he scheduled her to have another EEG tomorrow - prior to today ive seen that a lot of people have these symptoms and are associating them with Dilantin - her neurologist however , is stating that the dilantin should not make her non-functionable so there must be something else going on.
Nausea, dizziness and pin needles in extremities are all possible symptoms of Dilantin toxicity. Has she had her blood syrum levels checked while experiencing this?

Memory problems can also be a side effect of Dilantin, but they can also be the result of seizure activity.

Skilly offered a lot of good ideas. :)
 
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since the 3/17/09 visit - she had another EEG done which did come back abnormal with her phen. level being at 12 - so my mother started taking the Keppra too per Doctor's request. We then went to her PCP to have her blood work looked completely over and to talk about her Cholesterol, Blood Pressure and Anxiety Medication. Her PCP took her off the blood pressure medication b/c her blood pressure had been staying 98/60 consistantly(past 2 weeks she is now taking every other day b/c she does still need to be on it- jsut not every day) and switched her other meds to generic brands(she is still taking name brand to date until she runs out) Her blood work came back showing low white blood cell counts which can be consistant with her not eating properly at that time but they are going to do more blood work in another week. She started taking the Keppra 3/17 and after 3-5 days of taking it she then slept 20hrs the next 14 days! - she called the doctor and stopped taking the Keppra and started eating right. Now for the past 8 days my mom is more herself than she has been in a while. 4/6 was when she stopped taking Keppra and 4/9 her phen. level was 15 - we saw the neuro yesterday and he gave her 30mg of T...something since the Keppra's side affects were too much- in hopes of keeping her phen. level at 15. Her birthday was 4/11 so for her to feel herself on her birthday and actually had a full day of acitivity with no problems was the best birthday present anyone could give her and then of course the next day being Easter and she was able to have company over and back to loving being a hostess =) She did so well and we are hoping to keep up this wonderful routine and balanced out meds that are working=) Conclusion - with her eating properly and consistantly it made a huge improvement for her health. -thanx again for everyone's help - Everyone here is wonderful and was really helpful - but I'm not going anywhere - I love these Forums - they really help =)
 

RobinN

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Conclusion - with her eating properly and consistantly it made a huge improvement for her health.
hmmm.... interesting concept
 
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sheilabear17,

I am so happy to hear the great news, that your mother is doing much better
and they did a re-adjustment on her medications, which should make her appetite better,
and I am glad to hear she was had a happy birthday.

CHEROKEE09
 
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