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Jeremiah

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Hi all,

I am here on behalf of my mother who has had seizures for 4 years now. It all started on March 1st, 2009 at about 2 in the morning. I was 14 at the time, in my room on the computer when I heard an awful shout. I thought it was my brother perhaps having a nightmare and went out to investigate. My mother was sleeping on the couch at this time, as my father's sleep apnea machine kept her awake and they could not sleep in the same room together. Anyway, I found my mother having a tonic-clonic and I was deeply disturbed.

We did not call an ambulance this first time, but the second time a few days later we did. All tests came back normal. They started her on some meds- I don't recall which- but they deeply affected her cognitive abilities and she stopped taking them. She was a professor at a college at this time so she needed to be able to think and reason. (She has since left that position and switched to teaching full-time online.) Because she did not have seizures during the daytime and only in her sleep, we felt that medicating would be unnecessary and were unhappy and uneasy about taking a cocktail of chemicals.

Shortly thereafter she began experiencing what we started to call "blips." I suppose they are a type of complex partial seizure. This would affect her in the middle of the day and less often during sleep. They would usually involve her rocking back and forth, clearing her throat, laughing, repeating a word or phrase over and over, or even singing. Sometimes she could carry on conservations. She would return to a state of normalcy within a few minutes with, of course, no memory of the event. (Strangely, I have noticed that they would be triggered by intense emotion, especially sadness, although anger and joy could set them off as well. I don't know if that means anything.) At this point she gave up driving. However, she still did not go back to meds as the tonic-clonics would only happen perhaps once or twice a month and the "blips" would happen 2-3 times a week.

I consider myself a health conscious person and started having her take some vitamins: a multi, B-complex, niacin, taurine. It's hard to say whether these conclusively helped or not as the frequency of the seizures are hard to map. She is also currently on a modified Atkin's diet, though if I am being honest we have not really stuck to it as far as limiting carbs and testing ketones. We could be doing a much better job but she tells me that some days she doesn't even want to eat. Sigh.

However, the sh*t has really fit the fan this weekend. On Friday afternoon my mother was working on the computer when she had a "blip" event. This is certainly a common occurrence and we (myself and my two brothers, who are home schooled and home during the day) were not too worried. However, the "blip" escalated into a tonic-clonic seizure and she fell over onto the hardwood and began to seize. Thankfully she did not hurt herself. She recovered and went about her day, with no sign of being altered by this unprecedented event of a tonic-clonic during waking hours. However, I was deeply alarmed and disturbed by this occurrence and began to feel the panic welling up inside me. I knew that these seizures during the day greatly elevate the seriousness of the situation.

Today was even worse. She had two seizures today, both preceded by the "blips." The first she was sitting for and fell over again. The second she was standing, but we recognized that she was having a blip and were on standby to catch her if she started having a tonic-clonic, which she did. That was about an hour ago. When she came out of it, she sobbed, perhaps realizing that things are serious, and then went to bed.

I am scared for what lies ahead. I pray to God that this is not the new normal- I have recognized that, even though the seizures and blips are a terrible thing, she was lucky enough not to worry about injuring herself during the day through a fall or somesuch thing. No more. I hope this is just a fluke. I realize this may be controversial, but none of us what her to take medication because we are unhappy with the side effects. Now what?

Needless to say, as I am sure everyone here can testify to, it has shaken our family life to the core in a dramatic way. My mother feels at fault and constantly apologizes to us for the situation. I recognize that she is the one having the worst time of all, but I would be lying if I said it does not take a toll on me and others. I can't imagine what my father is going through.

So I guess I am just asking for some words of encouragement to not make this situation seem so hopeless and horrible, and perhaps some advice to if there are other supplements we could try. We just don't feel that medications are the way to go for us, though I recognize the new found danger in this situation. I just don't know what to do.

Thanks for listening.
 
It is going to be ok... Everyone here is here to help and support you any your family. She will most likely need to call the Dr. and have a medication adjustment is all. I know it is scary to go through but it will all work out in the end. Is she keeping a seizure diary if not maybe you could help out by righting down when this happens date, time, how long they last and what happen before during and after. That would be a big help for the Dr. and to find out what is trigging them.
 
It is going to be ok... Everyone here is here to help and support you any your family. She will most likely need to call the Dr. and have a medication adjustment is all. I know it is scary to go through but it will all work out in the end. Is she keeping a seizure diary if not maybe you could help out by righting down when this happens date, time, how long they last and what happen before during and after. That would be a big help for the Dr. and to find out what is trigging them.

Thank you for your words. We have been keeping track on a calendar by writing the time down. Adding how long it lasts seems like a good idea.
 
Do you know if she is having frontal lobe seizures? It sounds a lot like what I deal with.

I don't know, but I looked up frontal lobe seizures and it does sound very much like it.

This morning she had another "blip" in the kitchen but it did not produce a tonic-clonic. I hesitate to say that it is "good," but I am at least relieved that it progress into something worse.
 
I call my minor ones the ok seizures, and the worse it gets the worse the names for them get. lol Is she seeing a Neurologist?
 
Hey Jeremiah,

This is serious sounding, have her thoroughly checked out by the doc, have a cat scan, mri and EEG done. I assume they did this the first time at the hospital, but just in case, these are needed tools to find out what may be wrong.

The cat scan would be very helpful to rule out a brain tumor. When i had my first grand mal, it was due to a brain tumor. I had lots of headaches and auras, that were so new to me, i couldn't even explain it to my doc and when i did, he must of thought i was nuts.

I like you, did not want to take meds for the same reason you said, but it's worth the roller coaster ride to find the right med for your mom, especially if it can stop the seizures or at least control them.

Best of luck to you and your mom.
 
Hi Jeremiah, hats off to you for being so mature and caring at such a young age. (well 18 is young to me.) You have come to the right place and I am sure I can speak for everyone in saying I hope you can get things sorted out soon. She seriously needs to see a neurologist to have the appropriate tests and for a correct diagnosis so that the right medication can be established. This does not have to be the new normal for your mum if they can start her on a medication which works for her and many epileptics will go for years without a seizure so think positive, stay calm and do all the things you are already doing because I believe that your parents are very lucky that they have a son so in tune. They should be proud of you. Take care
 
So I guess I am just asking for some words of encouragement to not make this situation seem so hopeless and horrible, and perhaps some advice to if there are other supplements we could try. We just don't feel that medications are the way to go for us, though I recognize the new found danger in this situation. I just don't know what to do.
Hi Jeremiah, I wanted to add my welcome to the others! And also to say that while I completely understand why you don't want to try medications, you may need to reconsider if your mother's seizures continue to escalate. Uncontrolled seizures can potentially lead to more frequent, more prolonged and/or more serious seizures. So meds may be worth a try when you look at the big picture.

Another treatment option to consider (particularly if you have the funds), is neurofeedback. It's a way of re-training the brain to suppress "bad" brainwaves and strengthen "good" brainwaves via eeg neurofeedback sessions. It's non-invasive and side effects are virtually nil. You can read more about it here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

Best,
Nakamova
 
you may need to reconsider if your mother's seizures continue to escalate. Uncontrolled seizures can potentially lead to more frequent, more prolonged and/or more serious seizures. So meds may be worth a try when you look at the big picture.

:agree: If your mother's seizures are escalating, that can be very dangerous, also. I understand her not wanting to take medication because of the cognitive side effects, but think long term. If left untreated, it can lead to disastrous results. I've been there and now have burn scars to prove it. So please get these seizures under control ASAP. Better be safe than sorry!
 
I call my minor ones the ok seizures, and the worse it gets the worse the names for them get.

No seizures are "ok seizures". They can all get worse over time and turn into TC's if they aren't treated. Seizures beget seizures, so it is best to stop them ASAP! A person can go into "status epilepticus" (non-stop seizure) if not treated properly to begin with. I've gone status several times, even when trying to find the right meds.
 
By ok I meant that they're the least severe out of all of the ones I get. I did not mean to minimize them in anyway, shape, or form. I'm sorry if it came off that way.
 
UPDATE:

My mother now has a minor case of pneumonia in her left lung and is currently on a round of antibiotics (clindamycin, I believe) for that. On Monday morning she ended up having three tonic-clonics in the span of six hours or so. Also during this time she was up literally all night and had not gotten one wink of sleep. I am apt to believe that the three seizures were caused by this lack of sleep as this seems to be one of her main triggers. However, I have also read that antibiotics can aggravate seizures, which is interesting.

In any event- I have found a naturopathic practice in the area and my mother felt much better about going there to try and find a treatment or a solution. She will be calling in the afternoon to find out more information but as it stands, I feel optimistic about this and am hoping that they will be able to help, or at least tell her what I have been thinking all along: a better diet, exercise, and lots of sleep would certainly not hurt.

I will be sure to post back when more information develops. I like using this thread as a journal of sorts.
 
Infection, dehydration, fatigue, and antibiotics can all be seizure triggers, so the sooner your mother recovers the better. I hope the naturopath helps.
 
I too had similar situations with my father I was freaking out the first time my dad had a seizure I didn't know what it was I was sure he was dieng he also feels sorry for what has happens grand mal seizures are a picture you will never get out of your head I do think medication is the way to go there are so many to try to find ones that have the least side effects for your mom as everyone reacts differently
 
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