Hello everyone, this is my plight

[alivenwell]

There are a lot of people without epilepsy who are abnormal. Isn't it a great thing to not be boring and lead a dull life?

Have you ever tried progressive muscle relaxation techniques? It's basically tensing up one muscle group at a time and then relaxing it (start at your feet and work your way upwards). After a good session with that, your body is so relaxed, and stress is relieved. Some people also practice Laughter Yoga.

My rx to you is to practice laughter yoga and faithfully take the Keppra.

Check out the Youtube in the 2nd post off the following link ...

http://www.coping-with-epilepsy.com/forums/f34/its-not-getting-better-6549/#post63076

 

[Meetz1064]

Hey MrFun

You know what though? 1 week is a good starting point considering what you have been going through, and if you do tell your dad, you need to point that out. It's OK. Your brain has learned to seize, and seize, and seize again.....it's gonna take a bit of time for it to truly calm down. Breakthroughs will happen once in a while, but hopefully 1000 mg will be the right dose for you.

Your neuro should be checking your blood levels every so often to make sure that they're not too high, and that they are at an adequate level....

By the way, don't forget to start an E journal.......it WILL help you and the docs eventually figure out the triggers. It may even be food that you don't realize is causing the pain in the first place to set things in motion. If you need help with what to put in the E journal, let me know, I have a pretty decent list.

Oh, yes, before I forget. Welcome to CWE. :bigmouth: I'm sure you're going to like it here. You're already finding out how much support there is here, and lots of information to learn, and nooks and crannies to check out. :roflmao:

Take care!

Meetz
:rock:

 

[Eve]

Alex:

I had a seizure when I was moved down from 1000 to 500 on the Keppra XR. Now I am back on 1000 Keppra Xr and I think I had just a small seizure last night.
I am going to give it till next week and see what happens. Last night I cooked a new recipe and the meal was with thyme, rosemary, fennel , lavendar, tumerric, apricot preserves,ketchup , apple cider vinegar along with the chicken and brown rice. Anyway about 10 to 15 minutes after I got done eating I felt a strange sensation in my head almost as though I was coming down with a migraine. It kept coming and going for several hours. So I am wondering if something I ate made me have a small seizure last night. Anyway I wont being cooking that recipe anymore, that's for sure.



I will stick with plain pizza tonight and see how it goes.

I don't know if my DR plans to move me up from the 1000 Keppra or not , I think he is waiting to see what happens.

Anyway hang in there you are not alone.
I used to feel like I was alone until I came to this site. My friends always gave me a horrific look when I told them I have nocturnal seizures even though they are simple partials.

Oh I wanted to tell you that with the regular Keppra my legs felt weak and I was only able to go for my 20 minute walks. Normally I walk an hour and a half a day. Since I started on the Keppra XR I am able to do my hour and a half walk a day. I hope by next week I'll be able to get back into yoga, I think I really need it sometimes my muscles are so tense and I just feel like they all need to be stretched a great deal.:e:

 

[MrFun]

maybe yoga can work, but my seizures always seem to happen when I'm relaxed. Yesterday's seizure happened after I took a nap in the afternoon. What usually happens before a seizure is I feel some sort of "pressure" building up. While on Keppra I had the impression that this pressure was still building up but without the auras. I was elated that I didn't get a seizure on Tuesday, Wednesday or Thursday. But the pressure was still building. On Friday I went for a nap at 16:30 and woke up with an aura. Someone outside made a noise and I woke up. I thought to myself, "Oh no, not an aura" and barely made it to the toilet before it erupted.

So, I'm not sure if yoga or relaxation is the way to go. I don't know what triggering it, some deep down emotional problems? I just don't know.

Thank you for the welcome, Meetz! I already feel at home here and there's been so many comforting words spoken, I'm blown away. Like Eve said above, it's easy to feel like you're the only one on the planet with this. I wonder how many more people have this but are successful at hiding it?

Eve, that so weird, because a friend of mine said that it could be the Indian food that I'm eating. Maybe there's some sort of herb or spice in it or something like that. I used to hate rice but started eating it when my seizures started. Maybe that has something to do with it? Maybe I should try one month without Indian and rice....oh no

Maybe it would be a good idea to cook that recipe you mentioned again. If you can reproduce a seizure consistently, you will have figured out at least one trigger!

I'm starting 1000mg on Tuesday and then 1500mg on Tuesday week. We'll see how that goes.

So far I haven't really noticed anything on Keppra, besides that I sleep like a rock again. My legs aren't wobbly anymore, since I'm on sick leave at the moment, I took the opportunity to walk around town the last few days. Probably 5-6 hours worth of walking a day. No side effects, just sweaty palms (but that could be from the anxiety of taking them, i.e. what if they wreak my kidneys, what if there are long term side effects noone knows about, etc etc).

I wish you all the best, and Eve, I hope you have a great deal of fun at yoga! I envy you, because I was planning on starting training again next week. Now that I had a seizure yesterday, I feel very insecure of doing anything "new". I guess I'm always worried of getting a seizure at training.....

All the best,
Alex

P.S.: we'll see what 1000mg does for me. We'll see if I have another seizure soon....

 

[Meetz1064]

MrFun

Hi again MrFun:

I'm glad you're feeling comfortable here, and yes, it's truly possible that it's food that is doing the trick to you. Why not keep a detailed E journal to see if that's the case? Check out the different diets available here on CWE -- not necessarily to lose weight, but to attempt to help control the seizures -- and see if you could live with one of those? Back to the E journal, I do have a pretty detailed list of what should go into it, if you'd like it......

Take care,

Meetz

 

[Meetz1064]

Hi again Eve:


There are some herbs that we're not supposed to use cuz some of us really ARE sensitive to them, you may be one of those. I BELIEVE rosemary and fennel are the offenders.

Check out this link:EPILEPSY HERB INFO

You may want to pick up some books on herbs to help yourself become a little more familiar with it....

Take care,

Meetz
:rock:

 

[Eve]

Meetz thanks for the link!!! I had a feeling that maybe those herbs I used in some new recipe the other night may have cause me to have a nocturnal seizure. I used some herbs called "Herbs de Provence" On the bottle it says it contains thyme , marjoram,rosemary,basil, fennel, sage and lavendar. Well i wont be using those herbs again or making that recipe . Oh I see the sage is also on the list of herbs to avoid. There were 3 herbs in that bottle of herbs that made the list of herbs to avoid.!!!!!I just threw that bottle of herbs in the garbage . To tell you the truth, it wasnt even that good, some new recipe I had gotten off the internet. I should be more careful. LOL

Alex, I eat curry alot. There's this place my family and I go to every now and then that makes great curry with coconut milk as spicy as you want it with the red curries or yellow curries and it never bothers me. I always get the yellow colored curries though only mildly spiced.The rice they use is the jasmine rice and it never bothers me either.

I think it was the rosemary and the fennel like Meetz said cause it was on that list http://epilepsyontario.org/client/EO/EOWeb.nsf/web/Herbs

Last night I had pizza and it didn't seem to bother me .:clap:

Good idea Alex keep a food diary. Hope the 1000 mg improves your symptoms.

I am going to give it 2 more weeks to try yoga again. I still feel a little off. This morning when I got up I was real drowsy and a little dizzy. I wasnt able to do a good walking workout. But I am slowly getting better.:e:

 

[RobinN]

I wanted to add, that you should be aware that as when you increase drug amounts, there might be side effects with reducing that same medication. This is to be expected while the body becomes adjusted to the lack of the medicine. A journal is very helpful to see if over time, those side effects are becoming less of a problem or more so.

 

[Meetz1064]

Yes,

Herbs de Provence can be a problem for some E patients. I am quite familiar with, as I cook quite a bit. I can handle rosemary, combined with other herbs, such as in an Italian type blend, but that is me.

I haven't cooked with Herbs de Provence in a while, but I may do so soon, just out of curiosity. There are four full grown men in my house, plus my 23 year old daughter, they'll eat most of what I make, so I won't get too much concentrated sauce/herbs, etc. :roflmao::roflmao: (Cooking for six full grown adults is worse than cooking for twenty three or four year olds---they're all too damn picky).

But this proves my point. It really IS important to keep an E journal.....especially in regards to food. Even if you're not using meds, or working to get off meds or whatever (Man I wish I could). YOU JUST FOUND A TRIGGER. You can write this down in an E journal, show it to your neuro, and it's something for him/her to have for documentation purposes to help you on your path. YESSSSSSS!!!!!!!!!:clap::clap::clap::woot::woot:

Keep it up! You WILL find those triggers!!!:woot::woot:

 

[Kansas Educator]

So does anyone ever find enough triggers that they virtually quit having seizures and are able to stop meds? That would be a dream come true for most of us!

 

[MrFun]

Thank you everyone for replying to the posts. I did read all your posts many times and kept the ideas about triggers in my head.

"What do you feel is causing it?" keeps ringing in my ears, which is something the doc asked me.

Here's a little update, of my situation to all everyone interested

I've been on Keppra for 10 days and I am currently at 1000mg, twice a day. I definitely feel some side effects. Mainly drowsiness and tipsiness. I do bump into things occasionally and I am also a little moody. Last weekend I had two intense days of depression. I really don't want to get into that, but I did have to constantly tell myself, "It's the meds!!! It's the meds!!!". Can't really sleep too well and I have vivid dreams.

Apart from the side effects, I did have a seizure last Friday and a precursor to one tonight. That's not unusual. In fact I'd even say the drowsiness and agitation could even be making things worse.

I do still however have an odd pressure on my jaw, up to my forehead and down my neck. The words, "what do you feel is causing it?" and its answer "Your teeth, stoopid" made me make an appointment to have my annoying wisdom teeth removed this coming Monday. Even if that is not the answer, I believe it is at least an answer to the question "Could my wisdom teeth be causing the pressure?".

I'm staying on the keppra for at least 6-8 weeks and taking the hospital time as well (scheduled for early Sept.).

So I believe you guys are helping me a lot, focusing on what could be the trigger. One time they asked Edison if he thinks about quitting, now that he's tried 900 different ways of inventing the light bulb. His answer, "No, because now I know of 900 ways it doesn't work".

All the best and one day we'll find an answer to E and its derivatives, just a matter of time......any day now

/Alex

 

[Nakamova]

Hi Alex --

I just wanted to point out one other potential trigger to monitor -- you mentioned that you were out walking 5 or 6 hours a day a couple of days last week. The extra activity and being outside might have made you a bit dehydrated. It's easy to get dehydrated without knowing it, even if you think you're getting enough water.

Best,
Nakamova

 

[Meetz1064]

Kansas, I

just saw your post. In answer to your question......yes, some people DO figure out what all of their triggers are so that they are able to avoid seizures. Have you ever read the book by Adrienne Richards and Dr.........Reiter, I think? I believe the name is Epilepsy: A New Approach. Good book. My copy has been destroyed, I need to get a new one, but it is EXCELLENT. She learns her triggers, and finds ways to stop her seizures......

 

[kelso54]

Alex; have you had a monitored eeg? This is a eeg that lasts until you have a seizure. Since you are not on meds, they may have to find a trigger. When mine was done they took me off meds and it stillo took a week and sleep derivation to induce seizures. You are right when you say they need to catch a seizure on eeg. Until you have a seizure multible would be better on eeg it is of little diagnostic use, other than showing that you have good controle. You may have to request one. Ask your neuro, "what good is an eeg while I have good controle? Unless I have a seizure while I am hooked to eeg machine what does it tell you? Other than I am within range of normal", or something to that effect. Scott

 

[Eve]

Alex

I can relate to alot of what you are concerned with. It has taken me about a month to get used to this keppra. When I took the regular Keppra in the first week and a half I also had weird vivid dreams. After I was switched to Keppra XR the dreams went away. Also I found that if I take it on an empty stomach it works better. When I was taking my Keppra XR at bedtime after eating my yogurt I would awake in the middle of the night unable to sleep.

It took me a while to get used to this Keppra. But I am glad I switched from Cabatrol to keppra especially the Keppra XR which I only take once a day at bedtime.

Also I dont take the B6 anymore, it just didnt make me feel right when I took it with the Keppra. Taking the B6 with the Keppra made me feel too hyped up. I am also taking Zoloft 50mg and that seems to help and I no longer have the extreme irritability.

Good luck I hope you work it out cause I know its frustuating.

 

[MrFun]

Thank you again, you guys are helping me beyond words. I'm blown away. I soak up all the emotional support I get, unfortunately. Hopefully one day I can give some back, too

I'm still working on the triggers, but I'm slowly thinking that this is not epilepsy. Just tonight I had another seizure. Besides the side-effects Keppra does not seem to be working. I'm going to give this more of a shot, but I'm doubting this is really E.

kelso54, I have not had a monitored EEG yet, but I am scheduled to go to a specialist clinic in early September. It's one of the leading clinics in Europe, so I'm hoping they will come up with something. Even if they do not, they'll transfer me to somewhere where someone can help. I feel very lucky to have this amount of care. I feel very fortunate about that.

I hope I do get a seizure while they monitor me. The weird thing is:

- I constantly have a stiff neck on the seizure side. Especially in the mornings
- I have chronic pressure on my jaw and face
- I have a tingling feeling or numbness on the seizure side of my face, i.e. a slight tightnesss constantly
- I slightly squint my seizure side eye almost all the time, especially when I'm concentrating

If it's E, why am I feeling these symptoms all the time? The tenseness or tightness gets so bad that I sometimes press my thumb into my jaw or even hit it with my fist. I know that sounds violent but it does feel good because I can't massage the spot that exerts the pressure. TMJ? Tooth pressure? I do not know, but it doesn't seem like E. I do believe this is at least a trigger, if not the trigger.

How long does Keppra need to be taken to work? I've been on 1000mg for three days, and have taken Keppra for almost 12 days. Neither the seizures have stopped nor have they toned down or cut short in duration. Seems as if all Keppra is doing is making me moody, irritable, drowsy and depressed. That in itself tells me the meds are at least doing something.

Meetz, thank you for the book recommendation! I'm going to look for it on Amazon. Even if my condition is not E, E has started to get me interested. I actually find it fascinating and my view has changed considerably.

Thank you all again for all the amazing support!

All the best,
Alex

P.S.: Nakamova, true about the hydration! I started checking how hydrated I am daily months ago, so excellent tip! At a training club I once visited, they had a picture of these stripes and the colour of how your urine should look. When from light brown to transparent. That sorted stuck in my mind, so I started a habit of drinking a few litres of water a day. It might not be relevant to me at the moment, but an excellent tip!!

 

[alivenwell]

If I were you, I'd have wisdom teeth removed. I've had it done. Afterward, I looked like a puffy cheeked squirrel. I was on a liquid diet for a while. And, some salt water helps keep the area cleaned after they remove the wisdom teeth. It sounds like they are impacted pretty well and may be growing in a wrong direction. I know people who neglected their wisdom teeth and had to have braces on their other teeth.

If a seizure happens in your sleep, it's possible you're irritating the jaw area. Is it also possible there is another tooth cracked or infected? I know a tooth infection can affect the entire body.

 

[Kansas Educator]

Meetz,
Thanks for the recommendation about the book. I will order and read it and, hopefully, eventually get off these meds.

 

[MrFun]

Getting my wisedom teeth out tomorrow *eeek*. Even if it's the not the answer, it might tone down the pressure in my jaw and could be a trigger.

After all, face pain to the point of extreme pain attack (seizure) could be caused my impacted third molars. *duh*

Keppra is not working for me. I'm at 1000mg, it's been almost 2 weeks. Two major seizures, one small one, auras every night thus far.

I hope someone benefits from this thread as much as I do. I do want to prove once and for all that I will get well again and this thread will give other people hope. At the moment everything is so dark and gloomy and there's not diagnosis or cure in sight, so I know how many of you are feeling. Things often get worse before they get better, and this is not the rest of your life.....

All the best

 

[Eve]

Alex, if I were you I'd call your Doc and tell him the meds don't seem to be working right. Maybe you need a different drug. Not all seizure meds work the same on all people. I once tried Dilantin and it didnt work at all on me. So......different meds for different people.

I am on 1000 keppra right now but I think I am going to need my dose up a little cause last night I could feel just a slight seizure coming on..............just slight, but I do feel a definite improvement from a couple weeks ago.

I am going to call my Doc tomorrow and make an appt to go in. It is always hard resolving this stuff over the phone.

Good luck and keep us posted I know it's hard but you are not alone.

P.S. Get your dental problems fixed.