Hello, I've been looking for some kind of community to talk with people who deal with these same problems I've never been able to really connect with someone else about it before. I'm 31 and my first seizure was when I was 15, I've been on phenytoin to help with them ever since but it still doesn't control them very much. I average about 1 or 2 seizures a month, sometimes more sometimes less and they're grand mal seizures where I bite my tongue and cheeks really bad. My last one was on Monday just a few days ago and I've barely been able to eat anything since then because of the pain in my mouth. Most of the time they happen within the first hour of getting out of bed in the morning or if I wake up and try to go back to sleep for a little longer that will trigger them a lot. I've handled it well throughout my life but it's taken a lot of things away from me as well, as time goes on they almost seem to be happening more often and it takes me longer to recover afterwards, it may be 3 or 4 days before I start feeling like myself again. My memory has definitely been affected I looked through an old photo album of some vacations over the last 10 years or so and I can't remember any of them. Things just slowly seem to be getting worse and worse as I get older and as things continue to worsen, I can't help but keep thinking about how it would just be easier if I weren't around anymore. I don't have any intentions of doing something to myself but when I have these events my mind and view of the world does not think and process things the way I normally would. I'm just so tired of all of it, the pain, the mental toll, the helplessness. That's where I'm at right now, where I'm beginning to convince myself not being here would be the easiest way.
New to the community, I've had epilepsy 16 years
- Thread starter kizzle
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Hi kizzle,
Welcome to CWE! I've 59 and I had my first seizure at the age of 10. I started out having absence seizures but then 2 yrs. later I began having complex partial seizures also along with aura (simple partial) seizures.
I've tried many seizure meds but then I found out I was drug resistant to all seizure meds on the market after having a DNA test done so my
Dr. told me to start using cbd oil and that has reduced my seizures to the lowest in my life.
Take my word the seizure meds often make a person want to take their life I've had that feeling in the past also.
Make sure you are keeping track of your seizures get a calendar and write down what time the seizure happened and the type of
seizure you had by doing this your Dr. may see a pattern in your seizures as to what days of the month or what time of the day/night
you have seizures.
I'm wondering if you may be having myoclonic seizures also they are seizures that happen when a person first wakes up or when
the person goes to bed. I found out I was having them after my Dr. ordered a sleep study to be done along with an e.e.g. and e.k.g.
I was having seizures 1-2 hrs. before I woke up in the morning but I didn't realize it. If you ever notice that you are feeling tired in
the morning when you wake up and you've gotten plenty of sleep this may be the problem.
Take my word you will get a lot of help here. Everyone has been a great help to me and I've learned a lot from others here.
Try taking vitamin B12 1000 mcg. once a day that helps calm the nerves also.
I wish you the best of luck and May God Bless You,
Sue
Welcome to CWE! I've 59 and I had my first seizure at the age of 10. I started out having absence seizures but then 2 yrs. later I began having complex partial seizures also along with aura (simple partial) seizures.
I've tried many seizure meds but then I found out I was drug resistant to all seizure meds on the market after having a DNA test done so my
Dr. told me to start using cbd oil and that has reduced my seizures to the lowest in my life.
Take my word the seizure meds often make a person want to take their life I've had that feeling in the past also.
Make sure you are keeping track of your seizures get a calendar and write down what time the seizure happened and the type of
seizure you had by doing this your Dr. may see a pattern in your seizures as to what days of the month or what time of the day/night
you have seizures.
I'm wondering if you may be having myoclonic seizures also they are seizures that happen when a person first wakes up or when
the person goes to bed. I found out I was having them after my Dr. ordered a sleep study to be done along with an e.e.g. and e.k.g.
I was having seizures 1-2 hrs. before I woke up in the morning but I didn't realize it. If you ever notice that you are feeling tired in
the morning when you wake up and you've gotten plenty of sleep this may be the problem.
Take my word you will get a lot of help here. Everyone has been a great help to me and I've learned a lot from others here.
Try taking vitamin B12 1000 mcg. once a day that helps calm the nerves also.
I wish you the best of luck and May God Bless You,
Sue
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Hey kizzle, welcome to CWE!
I’m surprised that you've been on the same med for 16 years -- usually the neuro will try something else if the first med doesn't do the trick. Plus phenytoin can have long-term side effects. Please don't lose hope! Ask your neuro to consider adding or changing your medication. If they won't, then think about changing your neuro! And while you're waiting on the doc, there are many different ways to be proactive. Sue lists some possibilities above.
And I heartily recommend venting and sharing here at CWE. We can offer some anecdotal advice (always check with your doctor first), and plenty of support.
Hugs to you, and sincere wishes for a happier, healthier new year.
— Nak
I’m surprised that you've been on the same med for 16 years -- usually the neuro will try something else if the first med doesn't do the trick. Plus phenytoin can have long-term side effects. Please don't lose hope! Ask your neuro to consider adding or changing your medication. If they won't, then think about changing your neuro! And while you're waiting on the doc, there are many different ways to be proactive. Sue lists some possibilities above.
And I heartily recommend venting and sharing here at CWE. We can offer some anecdotal advice (always check with your doctor first), and plenty of support.
Hugs to you, and sincere wishes for a happier, healthier new year.
— Nak
My neurologist hasn't changed anything because I've always told him I have not had any episodes since the last reported one because I don't want to lose my license again, if that happens then my job is gone at the same time, my employer knows about my condition and I even had a seizure at work once about 8 years ago, it was the first time I ever got to watch it happen on the cameras but if I lose my job then I might as well just end things for myself otherwise I'm homeless. A lot of the time including a few days ago when they happen I'll have 2 of them in a set, usually the 2nd within an hour of the first, Monday morning I know the first one was before I woke up because I woke to my head pounding, my bed wet, all the familiar feelings, and my tongue and mouth torn up. Then I went out to the living room and according to my mom and sister I had another one when I sat down. So most of them happen shortly after getting out of bed but I've still had plenty throughout the middle of the day and into the night, again I always get the aura before and I can tell if something is going to happen, then I just wake up somewhere
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I definitely get not wanting to lose your license (and your job and your independence), but not having seizures under control is a very risky path to take. Uncontrolled seizures tend to get worse -- as you have noted, your seizures seem to be happening more often and it takes longer to recover from them. The long-term consequences are worrisome. If you are afraid to tell your neuro about your seizures, you can still tell him that you want to try a different med. If you don’t want to try that, you could consider the CBD oil that Sue suggests above, since you can get that without going through your doc. Don't give up!
Thank you for welcoming me and I'm happy I found this place. Yesterday was a bad day I ended up having another one while I was taking a shower and came back around laying in the bathtub choking on water. That makes 3 in 5 days, I was really out of it pretty much all day afterwards, more so then usual but after a good nights sleep I'm feeling much better today. I have my yearly check up with my neuro on the 4th and I plan on being honest with him about whats been going on. I know it's going to cause me a lot of problems but yesterday was the first time I've ever truly been scared about my situation. I've never felt completely out of it like I was yesterday, feeling odd for a while after a seizure is normal and can usually take a while before I feel good again but yesterday was like I was just drugged all day and I kept seeing static like you would see on your tv with bad reception when I closed my eyes that's never happened either. So I'm going to talk with him about possibly changing my meds and ask to get another round of tests because it's been quite a while since anyone has had a look at my brain. If I stopped my meds I could pretty much guarantee I would have one within 24 hours so it might even be worth letting them keep me in the hospital until it happens so they can see where it comes from.
Aside from that I love the idea of keeping track of them with a calendar, I've never thought about that before, I already use some CBD products occasionally, mostly THC. There have been many times I've been in the middle of an aura on the verge of going out and a hit off the pipe or my pen has stopped it. I know that still counts as a seizure but I would much rather just get that feeling every time then when it progresses to the next level.
I look forward to what's to come with everything on here, thank you again for your support and I hope you all have a happy and healthy 2022!
Aside from that I love the idea of keeping track of them with a calendar, I've never thought about that before, I already use some CBD products occasionally, mostly THC. There have been many times I've been in the middle of an aura on the verge of going out and a hit off the pipe or my pen has stopped it. I know that still counts as a seizure but I would much rather just get that feeling every time then when it progresses to the next level.
I look forward to what's to come with everything on here, thank you again for your support and I hope you all have a happy and healthy 2022!
Hi kizzle,
Sorry to hear you had another seizure yesterday. I used to have seizures in the shower when my hormones were changing each month.
When I told my Epileptologist about it he told me that the hot water hitting my head can fire up the neurons in the brain and in turn lead
to seizures for some people. He then told me to make the water a little cooler and since then I've had no more seizures while in the shower.
Just like you when I get the start of an aura seizure it will usually lead into a absence seizure but back in the 1970's the neuro I was seeing
told me to tighten up all the muscles in my body and make my hands into tight fists for a few seconds and if I did it fast enough it would
stop my seizures.
When you were seeing the static that was the optical lobe which is in the back of your head. Often I see colors flashing back and forth
in my eyes right before a complex partial seizure starts and my Dr. told me that the seizure was starting in that area and that's why I was
seeing the colors and when I was younger I would see weird shapes like hallucinations.
I had surgery done a few yrs. back to reduce my seizures then I wanted to lose some weight so I started taking 2 Tablespoons of apple
cider vinegar with mother in it and to my surprise I not only lost weight but the vinegar lowered my seizures to the lowest in my life.
It cuts back on the amount of carbs in a persons body and it has a good protein and good antibiotic in it and that's why my seizures
have reduced even more.
I wish you the best of luck when you see your Dr. you may want to ask for a DNA test to be done that way they will be able to
find the best med to control your seizures or see if you are drug resistant. When it come to the cbd oil I use it without the THC.
Wishing You only The Best and May God Bless You,
Sue
Sorry to hear you had another seizure yesterday. I used to have seizures in the shower when my hormones were changing each month.
When I told my Epileptologist about it he told me that the hot water hitting my head can fire up the neurons in the brain and in turn lead
to seizures for some people. He then told me to make the water a little cooler and since then I've had no more seizures while in the shower.
Just like you when I get the start of an aura seizure it will usually lead into a absence seizure but back in the 1970's the neuro I was seeing
told me to tighten up all the muscles in my body and make my hands into tight fists for a few seconds and if I did it fast enough it would
stop my seizures.
When you were seeing the static that was the optical lobe which is in the back of your head. Often I see colors flashing back and forth
in my eyes right before a complex partial seizure starts and my Dr. told me that the seizure was starting in that area and that's why I was
seeing the colors and when I was younger I would see weird shapes like hallucinations.
I had surgery done a few yrs. back to reduce my seizures then I wanted to lose some weight so I started taking 2 Tablespoons of apple
cider vinegar with mother in it and to my surprise I not only lost weight but the vinegar lowered my seizures to the lowest in my life.
It cuts back on the amount of carbs in a persons body and it has a good protein and good antibiotic in it and that's why my seizures
have reduced even more.
I wish you the best of luck when you see your Dr. you may want to ask for a DNA test to be done that way they will be able to
find the best med to control your seizures or see if you are drug resistant. When it come to the cbd oil I use it without the THC.
Wishing You only The Best and May God Bless You,
Sue
I do hope that things start getting better and that your neurologist will be able to help you find what works best for you.
That is definitely a scary experience and I am glad that you are okay!
Chewing a marijuana bud helps me out, I do a high CBD/low THC strain. I could be dizzy, not able to walk, and feeling like I'm on the fastest carousel in the world and my words start to get muddled, but chewing on a bud gets rid of this within 5 minutes or so. It might take me up to an hour to feel totally normal (not shaky, not foggy, etc.) but I do believe it has saved me a lot. The side effects aren't major, either.
I also recently asked my neurologist for a benzodiazepine on hand just in case. I got a bit upset when last time at the ER they pumped me full of 3mg of Ativan when 1mg is more than efficient for my size. I can remember the nurse's were debating who was going to take me to the bathroom and who would be liable if I fell down. I have a feeling that the nurse's weren't happy with the doctor if they argued about that type of thing in front of a patient (who wasn't all there) and my husband who wasn't too thrilled about all that, either. I always hate how benzo's make me feel for a few days afterwards, but how our world is going - if I can avoid the hospital, I would rather do so.
Thanks! Happy New Year to you as well
Plasticmask
I don't have a "deaf accent"? Hm, hadn't noticed.
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Welcome.
You don't HAVE to tell your Neuro that things are WORSE, but you COULD tell them that it happened again. There are THOUSANDS of people living here in the States, just for instance, risking theirs and everyone else's lives just because they want to drive but are epileptic. Why should you be any different? This is, after all, about you, you've pointed that out. Let them help you! Just my do rupiah, for what THAT'S worth.
You don't HAVE to tell your Neuro that things are WORSE, but you COULD tell them that it happened again. There are THOUSANDS of people living here in the States, just for instance, risking theirs and everyone else's lives just because they want to drive but are epileptic. Why should you be any different? This is, after all, about you, you've pointed that out. Let them help you! Just my do rupiah, for what THAT'S worth.
Well I'm going to see him tomorrow morning and have already decided he needs to know whats going on. Thankfully aside from that today is the first day I've felt normal since they happened last week, my tongue still has a nice hole in it but the rest of it is mostly healed up. I'm going to ask for an MRI, e.e.g, blood work on the meds, and I was thinking about a sleep study as well. Can anyone think of something else that would be good for me to bring up with him while I'm there?
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Good for you for being proactive! It may be too soon to discuss a med change, but at some point you might want to talk about long-term side effects of phenytoin and if there's anything you need to be aware of. (I switched off of it after a few years because it was affecting my gums, and because it can lead to osteoporosis). And if there are newer meds that might be a better fit (Lamotrigine has been the winner for me, but there are a lot to choose from).
Hope all goes well tomorrow!
Hope all goes well tomorrow!
Hello & welcome to CWE. I've had simple partial seizures since childhood--they weren't diagnosed as seizures until after I had some grand mal seizures when I was 14. About 22 years ago I began having complex partial seizures. I have tried on nearly every AED out there. I'm currently taking 400mg/day each of Topiramate & Zonisamide, but I still average 1-3 breakthrough seizures/month.
Hi Kizzle,
Be sure to tell the Dr. that sometimes you feel tired after a good nights sleep and ask if a sleep study should be done as I
mentioned before. I would also ask about hormones causing seizures and tell the Dr. to explain that to you. Another test
you may want to ask to have is a SPECT scan or PET Scan these 2 tests show a lot of detail as to how the blood flow is in the
brain and much more.
I wish you the best of luck and May God Bless You,
Sue
Be sure to tell the Dr. that sometimes you feel tired after a good nights sleep and ask if a sleep study should be done as I
mentioned before. I would also ask about hormones causing seizures and tell the Dr. to explain that to you. Another test
you may want to ask to have is a SPECT scan or PET Scan these 2 tests show a lot of detail as to how the blood flow is in the
brain and much more.
I wish you the best of luck and May God Bless You,
Sue
Thank you Sue, what you said before about being tired after having plenty of sleep makes me think I've been dealing with this since I was a little kid, I remember complaining to almost every member in my family as a little kid when I had to get up in the morning because I was so tired, they always laughed and told me if I slept too much it would make me tired, maybe that's why. Again my first grand mal wasn't until 15 that I know of but this last week has definitely triggered something that's making me think about this a lot differently then I ever have. If I can help any of you I would love to do so.
So he's going to switch me to 500mg of Keppra twice a day but doesn't want to cut off the phenytoin until he see's how it affects me and he's increased that from 500mg before bed to 300mg twice a day until then so I'll be taking them both. He ordered a blood test to see how my medication levels are currently as well as a MRI and I go back to see him in 3 months. So time will tell how well this goes
bdhshakes
Pillar
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Welcome, and good luck with the Keppra - I really hope it helps get things under control. I've had epilepsy for 25 years now and I'm right there with you on the memory, I talk to my wife about things we've done, like vacations, and she says "hey remember that one time we were at that one restaurant and there was a fire?" me: "nope, remind me?". I had my memory tested in 2015 for pre-surgery stuff, and I felt things have been so much worse lately so I requested it again from my neurologist and things had become a little worse. It's a real struggle sometimes but I take a lot more videos now of family things that we do to remind me, so that's been a fun hobby to pick up. I write things down a lot more now, for work or just things I need to do (bills, call for appts, work meetings etc) and it's helped a lot so I recommend try doing that more.