Fuck You Epilepsy In The Ass

[Superhero 8,884]

On the old board, I started a few threads - first about going to the ER for some undiagnosed problem; then going to the hospital to try to induce a seizure while under medical supervision.

For 2+ years, the docs couldn’t figure out what was wrong with me. Every once in a while, as in several days a week, several times a day, I’d just “feel something” for a split second, then spend the next 10-120 seconds rebooting my brain, during which time I had trouble speaking and understanding what people were saying. The docs prescribed a few different anti-seizure drugs without effect. I even went to see an ancient Chinese healer and have him poke needles in my scalp and other parts of the body. Nothing helped.

So in late February, my doc she said she wasn’t even sure I had epilepsy, and my seizures might be caused by stress. In my infinite wisdom, I took that to mean I didn’t need to take my medication (Trileptal). So while I didn’t stop right away, I cut back to half dose within a week and had a grand mal seizure. I was exhausted from several nights of poor sleep, and just rolled my eyes back into my head and fell onto my coworker. Luckily several of my coworkers knew what to do, and they made sure I didn’t get hurt.

In the following 3 months, the DMV suspended my license. I’ve been relying on my wife, friends and coworkers for rides around town. My doc and I tried Keppra again, then found Lamotrigine worked really well in controlling my focal seizures.

Last Wednesday, I had a phone appointment with my doc. I told her everything was going great, and she agreed to let me drive again as long as the DMV said okay. That night, I went home, felt tired, felt some focal seizure symptoms, went downstairs to the kitchen to take my medication, then proceeded to beat this shit out of the counters with my head, neck and shoulder.

My wife called the EMT because she said I stopped breathing and was turning purple. By the time the EMT came, I had woken up but was still out of it. They took me back to my familiar ER stomping grounds to get my head checked out and make sure I wasn’t dying.

I went back to work yesterday, but am still feeling pretty tired in the evenings. My drivers license has been suspended at least another 6 months at a minimum, and I’m not sure if I’ll ever be able to drive again. Which is unfortunate because I really enjoyed driving.

I suppose things could be worse. I could’ve seized long enough to become brain dead, leaving my wife and 2 young kids to fend for themselves. Guess I’m trying to find the positive in this shit show, but every once in a while I get discouraged. 

[Newdoc 3,464]

That  really sucks, especially since there is not a definitive diagnosis for you. Consider getting a second opinion and going to a research oriented epilepsy center. Look into some alternative therapies that might augment your current therapy. Some adults may even respond to ketogenic diets to stop this although the data is mostly for pediatrics.

[Newdoc 3,464]

And your Avatar fits perfectly. Ironically.

[SurlyBDR 22,890]

Sorry to read about your plight, and hope you can find something that helps. 

 

I hate to be "that guy" because I have no personal experience with it but, have you tried CBD oil? I've got a very small base of knowledge about it, but I know that it has helped some.

[Superhero 8,884]

13 minutes ago, SurlyBDR said:

Sorry to read about your plight, and hope you can find something that helps. 

 

I hate to be "that guy" because I have no personal experience with it but, have you tried CBD oil? I've got a very small base of knowledge about it, but I know that it has helped some.

No you’re not the first person to be “that guy”. My coworker’s BIL had grand mal seizures frequently and the controlled them with medication and smoking a lot of pot.

My company would probably frown upon me getting lit everyday, but might make exception for CBD oil as long as it’s prescribed by a legitimate doctor and not just someone wearing a white coat standing on the Venice Beach boardwalk. 

[SurlyBDR 22,890]

Well, just something to think about... if it's something that allows one to live a less disturbed life with medical issues then it could be worth consideration. 

 

From an outsider's view, fwiw

[Trey3216 15,380]

23 minutes ago, Superhero said:

No you’re not the first person to be “that guy”. My coworker’s BIL had grand mal seizures frequently and the controlled them with medication and smoking a lot of pot.

My company would probably frown upon me getting lit everyday, but might make exception for CBD oil as long as it’s prescribed by a legitimate doctor and not just someone wearing a white coat standing on the Venice Beach boardwalk. 

Friend of mine has them and has done better with cutting as much caffeine out of her diet and taking CBD oil 

[Chewbacca 7,789]

1 hour ago, Superhero said:

No you’re not the first person to be “that guy”. My coworker’s BIL had grand mal seizures frequently and the controlled them with medication and smoking a lot of pot.

My company would probably frown upon me getting lit everyday, but might make exception for CBD oil as long as it’s prescribed by a legitimate doctor and not just someone wearing a white coat standing on the Venice Beach boardwalk. 

CBD oil does not necessarily need to have THC in it.   Some does,  some doesn't.  And aren't you in CA?  It's legal,  yo.

Lots of people in CO have seen amazing results with CBD oil treatment for seizures.   Can't hurt to try it. 

Edited June 6, 2018 by Chewbacca

[TwiceHorn 31,667]

My Dad had em, starting mysteriously after his retirement, or right at it because his "passing out" at work helped precipitate retirement.  He never had a "definitive diagnosis."  Is there such a thing?  Last time I checked, epilepsy is kind of an archaic term for a person who has seizures.

 

My Dad's were never well controlled in the sense that he kept having them, but not daily or even monthly.  He tried basically all the meds and none were particularly better than the others.  As he aged (vascular dementia), post-ictal psychosis became a disturbing side effect.  His father was wrongly diagnosed with ALS (he died of a heart attack in his 80s), so some kind of mysterious neurological BS on that side of the family.

 

You have my sympathy, but it could be worse.

[SurlyBDR 22,890]

12 minutes ago, Chewbacca said:

CBD oil does not necessarily need to have THC in it.   Some does,  some doesn't.  And aren't you in CA?  It's legal,  yo.

Lots of people in CO have seen amazing results with CBD oil treatment for seizures.   Can't hurt to try it. 

Legal, yes... but employers still have the right to not hire. Insurance policies are a bitch 

[Chewbacca 7,789]

Just now, SurlyBDR said:

Legal, yes... but employers still have the right to not hire. Insurance policies are a bitch 

I get that,  which is why non THC CBD oil might be a good option.  But around here,  almost nobody cares about pot anymore.  Maybe CA is different. 

[SurlyBDR 22,890]

CBD oil can still contain trace amounts of THC in it, depending on manufacturer. Prolonged use could produce a positive result 

[LongestHorn 759]

As Twice pointed out, it may be genetic.  See another neurologist.  And then another until you fing one that can help you.

[Superhero 8,884]

1 hour ago, Trey3216 said:

Friend of mine has them and has done better with cutting as much caffeine out of her diet and taking CBD oil 

Yep. I cut out almost all caffeine in January 2017. It definitely helped reduce the seizures.

While I was on Lamotrigine, my brain was clear enough that I introduced it into my diet again. I think it was the lack of sleep (long work hours and still wanting personal time after work) and not necessarily the caffeine itself that caused the second grand mal. 

3 minutes ago, SurlyBDR said:

Legal, yes... but employers still have the right to not hire. Insurance policies are a bitch 

I need to check with HR, but I heard some people in my company are taking prescription drugs that are usually against policy. 

[Superhero 8,884]

32 minutes ago, Chewbacca said:

I get that,  which is why non THC CBD oil might be a good option.  But around here,  almost nobody cares about pot anymore.  Maybe CA is different. 

Recreational pot is legal in CA so generally employers don’t care. But I work in construction. Even though I’m in the regional HQ 90% of the time, and rarely step foot on a job site, my company definitely does prohibit most type of drugs. 

[Trey3216 15,380]

5 minutes ago, Superhero said:

Yep. I cut out almost all caffeine in January 2017. It definitely helped reduce the seizures.

While I was on Lamotrigine, my brain was clear enough that I introduced it into my diet again. I think it was the lack of sleep (long work hours and still wanting personal time after work) and not necessarily the caffeine itself that caused the second grand mal. 

I need to check with HR, but I heard some people in my company are taking prescription drugs that are usually against policy. 

No doubt lack of sleep will trip that.   

[Patrick Bateman 3,933]

So, I know a little about the issue and first, you have my respect, it's a bitch to deal with.  Question, while on the Lamotrigine, how long was it between seizures?  How long had you been on Lamotrigine?  Were you up to a therapeutic dosage?  How many ML were you taking a day?  I know the loading phase can be quite long but the good news is the half life is long so it stays in your system.  Is your profession considered high stress?  Any other changes to diet or lifestyle other than re-introducing caffeine into your diet.  I know someone who is using Lamotrigine and using non-THC CBD oil and has had encouraging results but every person is different and they have only had one grand mal, but were plagued with partial for a time.

Keep the faith....

 

[Superhero 8,884]

3 minutes ago, Patrick Bateman said:

So, I know a little about the issue and first, you have my respect, it's a bitch to deal with.  Question, while on the Lamotrigine, how long was it between seizures?  How long had you been on Lamotrigine?  Were you up to a therapeutic dosage?  How many ML were you taking a day?  I know the loading phase can be quite long but the good news is the half life is long so it stays in your system.  Is your profession considered high stress?  Any other changes to diet or lifestyle other than re-introducing caffeine into your diet.  I know someone who is using Lamotrigine and using non-THC CBD oil and has had encouraging results but every person is different and they have only had one grand mal, but were plagued with partial for a time.

Keep the faith....

 

I wasn’t on Lamotrigine for very long. Started taking it April 21st with really good results. The initial dosage was 50 mg/day; 100 mg/day after 2 weeks. I was at 100 mg/day until the grand mal, and now the doc has me at 200 mg/day. I’m not sure what is a therapeutic dosage.

During this time, I had focal seizure symptoms for a weekend in early May, and of course the grand mal on 05/30. It’s been much more effective than Keppra and Trileptal. I feel like a fog has been lifted from my brain, and I’m MUCH sharper at work. Many of my coworkers have noticed a difference in the past month.

As for my work, it’s relatively stressful. I’m a director in my company, and I run our regional estimating department of 15. There’s the regular resource management BS, I review almost every RFP that goes out the door; and will jump in to run the major pursuits. It’s stressful when we’re up against deadlines, and the past month, we’ve stayed at the office past 9PM more times that I’d like. When I’m not on projects, I’m overseeing training and process improvement, and the fun job of dealing with people’s problems. In short, I don’t get to surf Surly at work.

Thankfully my co-director is back in the office from a job, and another coworker was recently promoted to VP. Both of them are a God send at this time to help take some of the load off.

There hasn’t been a real shift in diet other than reintroducing caffeine. But like I said, we worked a lot of late nights, and turned around early the next morning for meetings in LA. I didn’t do myself any favors over Memorial Day by binge watching shows ‘til the wee hours. I think the exhaustion is what got me, but it could be a myriad of things.

[LongestHorn 759]

Get all your sleep.  I assume you already have MRI, EEG data and your doctor is a neurologist because I did not see the Shaggy thread.

[Superhero 8,884]

24 minutes ago, LongestHorn said:

Get all your sleep.  I assume you already have MRI, EEG data and your doctor is a neurologist because I did not see the Shaggy thread.

EEG, long term EEG, CT scans, MRI, PET scans, spinal taps. You name it, I’ve had it in the past 2.5 years. Yes I’ve seen 3 different neurologists, but all within the Kaiser Permamente system; so I wonder if their diagnosis is tainted by the other doc’s diagnosis before them.

Statistic that maybe only I’m interested in. All 3 neurologists were women. 

[Napoleon 8,710]

5 hours ago, Superhero said:

On the old board, I started a few threads - first about going to the ER for some undiagnosed problem; then going to the hospital to try to induce a seizure while under medical supervision.

For 2+ years, the docs couldn’t figure out what was wrong with me. Every once in a while, as in several days a week, several times a day, I’d just “feel something” for a split second, then spend the next 10-120 seconds rebooting my brain, during which time I had trouble speaking and understanding what people were saying. The docs prescribed a few different anti-seizure drugs without effect. I even went to see an ancient Chinese healer and have him poke needles in my scalp and other parts of the body. Nothing helped.

So in late February, my doc she said she wasn’t even sure I had epilepsy, and my seizures might be caused by stress. In my infinite wisdom, I took that to mean I didn’t need to take my medication (Trileptal). So while I didn’t stop right away, I cut back to half dose within a week and had a grand mal seizure. I was exhausted from several nights of poor sleep, and just rolled my eyes back into my head and fell onto my coworker. Luckily several of my coworkers knew what to do, and they made sure I didn’t get hurt.

In the following 3 months, the DMV suspended my license. I’ve been relying on my wife, friends and coworkers for rides around town. My doc and I tried Keppra again, then found Lamotrigine worked really well in controlling my focal seizures.

Last Wednesday, I had a phone appointment with my doc. I told her everything was going great, and she agreed to let me drive again as long as the DMV said okay. That night, I went home, felt tired, felt some focal seizure symptoms, went downstairs to the kitchen to take my medication, then proceeded to beat this shit out of the counters with my head, neck and shoulder.

My wife called the EMT because she said I stopped breathing and was turning purple. By the time the EMT came, I had woken up but was still out of it. They took me back to my familiar ER stomping grounds to get my head checked out and make sure I wasn’t dying.

I went back to work yesterday, but am still feeling pretty tired in the evenings. My drivers license has been suspended at least another 6 months at a minimum, and I’m not sure if I’ll ever be able to drive again. Which is unfortunate because I really enjoyed driving.

I suppose things could be worse. I could’ve seized long enough to become brain dead, leaving my wife and 2 young kids to fend for themselves. Guess I’m trying to find the positive in this shit show, but every once in a while I get discouraged. 

Have you given CBD Oil a try yet?

[NotActuallyALonghorn 4,979]

6 hours ago, Superhero said:

Recreational pot is legal in CA so generally employers don’t care. But I work in construction. Even though I’m in the regional HQ 90% of the time, and rarely step foot on a job site, my company definitely does prohibit most type of drugs. 

Seems like a seizure on a construction site would be a bigger risk...

[Nice Guy Eddie 13,537]

1 hour ago, NotActuallyALonghorn said:

Seems like a seizure on a construction site would be a bigger risk...

Makes a lot of sense.  But as we all now, HR and Insurance doesn't always make sense.  If the rule is X, then X is the rule.   

However at some point your health may have to tip the scales over the job.   If job stress was causing me problems, I would eventually look to find another job.  Don't kill yourself over a job that doesn't have any loyalty to you.  

Perhaps you can appeal to a top company officer to allow you to take a temporary, less stressful role.   At least you can determine whether the job stress is a factor.

 

[bernorange 8,368]

Well, poop.  Sorry to hear about the TC SH.  As you might recall, my wife has epilepsy and I've ridden the rollercoaster with her for over 20 years now.  I probably already told you most of what I'm about to say (again) in the previous threads, but no harm in repeating it...

Some folks are extremely sensitive to caffeine.  My wife can't even consume chocolate without significantly increasing her risk of breakthrough seizures.  Caffeine isn't worth it.  You can live without it.

The two biggest triggers for seizures are (lack of) sleep and (too much) stress.  Sleep needs to be considered in both quantity and quality.  Sleep apnea fucks people with epilepsy hard.  Dehydration (fuck you alcohol) can also interfere with quality sleep.  Having to wake up in the middle of the night to relieve a bladder interrupts the sleep cycle - don't drink anything within a couple hours of bedtime.

Stress is unavoidable.  Stress comes in the full rainbow - both "good" stress (excitement) and "bad" stress (depression/anxiety).  Keeping an even keel through all life's storms is an ongoing challenge, but, IMO, the first step is, as Clint said, "A man has got to know his limitations.".  You've got to be honest with yourself when you self assess your mental state and how you are dealing with life's circumstances.

Really glad to hear that you responded well to the Lamotrigine.  So many people never find a med that works for them (something like 30% of epilepsy patients).  Epilepsy meds (AEDs) are not magic bullets.  You have to be consistent with your dosing schedule and even then, never assume that the AED is guaranteed to give you 100% foolproof control.  The human brain never achieves a permanent state.  It has neuroplasticity.  It adapts.  It changes.  That can be good (strengthens/heals - improves seizure threshold) or bad ("kindling" - strengthens/develops pathways to seizure activity).  If you are open to .. less mainstream .. ideas, you might explore the possibility of EEG neurofeedback to help train the brain for more normalized function.  My wife had amazing results with it many years ago, but after a series of unfortunate events (multiple childbirths - hormones gone wild), it was less successful.

Back to the point about the "fluid" nature of the brain - even if you got a definitive diagnosis for your particular seizure disorder, that doesn't mean things can't or won't possible change in the future.  My wife, for example, has had her seizure patterns change numerous times over the years, mostly in response to changes in treatment.  When I say changes in seizure patterns, I means changes to the types of seizures she had, the frequency, the predictability (nocturnal only, daytime only, etc.), the duration of the seizure events themselves, the post ictal recovery periods, etc.  Basically any and every aspect of the epilepsy condition can change.  Don't take anything for granted.

There has been a lot of research in the last decade on the impact of diet on seizure control.  Many of the diets studied share a similar characteristic - limiting intake of simple carbohydrates. My wife has her best seizure control when she severely limits her intake of sugar (and white flour).  There is some interesting research developing in the last few years about the "gut-brain" and the possible role of the microbial environment in the gut affecting the seizure threshold.  Who knows, in the future, epilepsy patients might be prescribed "medical yogurt" instead of (or in conjunction with) pills. 

[orange dream 1,256]

I think I may have written similar info on your post on the other board.  My sister first presented with seizures when she was around 35  years old DURING A JOB INTERVIEW. For her it was really kind of a catatonic state where she would mumble nonsense and then have migraine level headaches after "waking up".  No one knew what was going on for a while and then once it was determined that it (and subsequent episodes) were seizures she started taking some of the anticonvulsives people have already mentioned.  During the course of figuring all of that out she was without her license and dependent on people for transportation, etc.  She was single so the loss of independence was profound.  She was in cycle of seiizure / license supension / lack of seizure / license reinstatement / another seizure / lose license, etc for years.    She even had a couple of seizures while driving during those periods when she had been seizure free long enough to have it reinstated. Thankfully no one was injured in either accident.

She had all the tests you indicated in trying  to figure out what was going on and how to control it.  Finally the medicine seemed to be "controlling" the seizures but even then they would occur 1 or 2 times per year which is just enough to be a real pain and move her back to not driving, etc.  That went on for 5 or 6 years and really drove her to the brink.  At some point the seizures started to be more frequent despite the medicines and no new combos of medicines were effective either.

I can't remember how she was referred but ultimately she was referred to someone at UT Southwestern who felt she might be  candidate for surgery.  They performed several tests/ procedures to try to isolate the triggers or at least the flashpoints in her brain that relayed the seizure stimulus to the rest of the body.   Ultimately she had a right hippocampus removal about 6 or 8 years ago now and after a couple of seizures (one of which was the worst she ever experienced) in the first 6 or 8 months post surgery she has been seizure free for years.  She has a genius level IQ and the biggest impact she had after surgery is that she lost memory of several common words which she will still forget from time to time (eg. at a restaurant when she needs a straw she might say, "can you bring me, um, ... one of those things you put in your drink so you can get the drink into your mouth".)  She started and finished a masters degree with honors post surgery and is really doing well.  Very proud of her.

I think the ultimate moral to her story is keep fighting and getting medical help until you find help.  No idea on the CBD oil, etc. but I would definitely explore any options that are available to you.

Another observation over the years with her was the importance of taking care of herself in reducing / preventing seizures.  if she was stressed / not getting sleep / even just getting sick (ear infection / cold / flu) it could have an impact on whether she had seizures.

I'm sorry man, but hang in there and keep us posted.

[kevwun 15,940]

You really should check in to the oil.  There are certain types of childhood epilepsy where it is the only thing that helps.  There was an episode of Vice a couple of years about a young girl who was having multiple debilitating seizures each day.  They were so bad that her development was stunted and doctors told her family she wouldn't live very long.  CBD oil stopped them cold and she leads a normal life now.  As others have said, the growers have developed strains for it now that won't make you stoned.

Edited June 6, 2018 by kevwun

[Chewbacca 7,789]

39 minutes ago, kevwun said:

You really should check in to the oil.  There are certain types of childhood epilepsy where it is the only thing that helps.  There was an episode of Vice a couple of years about a young girl who was having multiple debilitating seizures each day.  They were so bad that her development was stunted and doctors told her family she wouldn't live very long.  CBD oil stopped them cold and she leads a normal life now.  As others have said, the growers have developed strains for it now that won't make you stoned.

Yeah, i have read many stories of people who have moved here so they can get CBD oil for their kids or spouse.   I'm sure it doesn't work for everyone,  but it seems to work really well for many.  My neighbors pug had bad seizures and they stopped when they started giving it to him. 

[orange dream 1,256]

2 hours ago, Chewbacca said:

Yeah, i have read many stories of people who have moved here so they can get CBD oil for their kids or spouse.   I'm sure it doesn't work for everyone,  but it seems to work really well for many.  My neighbors pug had bad seizures and they stopped when they started giving it to him. 

pic of the neighbor's dog...

[Chewbacca 7,789]

His name is Puggles and he's a bad ass.

[C-Man 27,315]

Man, I think I'd rather take CBD oil and work in a different industry if that worked rather than not take it and keep a job in construction.

[Superhero 8,884]

6 hours ago, orange dream said:

I can't remember how she was referred but ultimately she was referred to someone at UT Southwestern who felt she might be  candidate for surgery.  They performed several tests/ procedures to try to isolate the triggers or at least the flashpoints in her brain that relayed the seizure stimulus to the rest of the body.   Ultimately she had a right hippocampus removal about 6 or 8 years ago now and after a couple of seizures (one of which was the worst she ever experienced) in the first 6 or 8 months post surgery she has been seizure free for years.  She has a genius level IQ and the biggest impact she had after surgery is that she lost memory of several common words which she will still forget from time to time (eg. at a restaurant when she needs a straw she might say, "can you bring me, um, ... one of those things you put in your drink so you can get the drink into your mouth".)  She started and finished a masters degree with honors post surgery and is really doing well.  Very proud of her.

Thanks OD. My doctor had suggested surgery last year, but I really didn't think it was necessary for focal seizures, which did not affect motor functions. Now with 2 grand mals in less than 3 months, I may consider it if she brings it up again.

Do you recall how long it took her to recover after the surgery? i.e. did she take a 1 month leave from work? 3? 6?

I already have some memory loss. I'm not sure if it's related to seizures, or because I'm getting older, but I have a hard time recalling names. I attended my daughter's kindergarten "graduation" today, and couldn't remember her best friend's name.

[Superhero 8,884]

1 hour ago, C-Man said:

Man, I think I'd rather take CBD oil and work in a different industry if that worked rather than not take it and keep a job in construction.

Right there with you. I like my job a lot, but I l also want to see my kids grow up.

[bernorange 8,368]

13 hours ago, Superhero said:

I already have some memory loss. I'm not sure if it's related to seizures, or because I'm getting older, ...

It's a very common side effect of both seizures and the AEDs.  Did you ever see that movie 50 First Dates?  My wife isn't that bad off, but pretty much 90% of any movie she watches, she's watching it for the "first" time.

[orange dream 1,256]

14 hours ago, Superhero said:

Thanks OD. My doctor had suggested surgery last year, but I really didn't think it was necessary for focal seizures, which did not affect motor functions. Now with 2 grand mals in less than 3 months, I may consider it if she brings it up again.

Do you recall how long it took her to recover after the surgery? i.e. did she take a 1 month leave from work? 3? 6?

I already have some memory loss. I'm not sure if it's related to seizures, or because I'm getting older, but I have a hard time recalling names. I attended my daughter's kindergarten "graduation" today, and couldn't remember her best friend's name.

Just to be clear, my sister had actually never had a grand mal prior to surgery.   The only one I'm aware she ever had was in the first few months post surgery.  All of her pre-surgery ones were classified as "complex partial" seizures.  The grand mal post surgery really threw her and me (she was in the passenger seat of my car at the time) for a loop.  We met with her surgeon and neuro a couple of days later, both of whom didn't think it was that surprising, unusual nor an indicator that the surgery was a failure.  Thankfully they were right.

Her surgery was in mid-June and it seems like she was in the hospital for a week or so post surgery and then stayed at our Mom's and pretty dependent on help for another couple of weeks.  After that she was back home by herself but couldn't drive for 3 or 4 months (maybe even 6 months).  She is a teacher so she had the summer off from work but was ready to go when school started in early August.  i would guess you'd be off work for 6 or 8 weeks and then start ramping back up to full time.

[Jerry Callo 8,780]

15 hours ago, Superhero said:

I attended my daughter's kindergarten "graduation" today, and couldn't remember her best friend's name.

I wouldn't chalk that up to medical issues or medications.  I never remember the names of my girls' friends - Ashley, Ashleigh, Abby, Abbey, Caitlyn, Kayla, Krista, Kenzie, McKenzie . . .

If you haven't looked into the ketogentic diet thing, it might be worth investigating.  I listened to a Joe Rogen podcast with Don D'Angostino who has studied epilepsy and diet quite extensively.

 

 

 

Edited June 7, 2018 by Jerry Callo

[safe sex 11,801]

Ketogenic diets were initially developed to help people with epilepsy. Would definitely look into it, OP. My sympathies for what's going on.

[TwiceHorn 31,667]

23 hours ago, orange dream said:

I think I may have written similar info on your post on the other board.  My sister first presented with seizures when she was around 35  years old DURING A JOB INTERVIEW. For her it was really kind of a catatonic state where she would mumble nonsense and then have migraine level headaches after "waking up".  No one knew what was going on for a while and then once it was determined that it (and subsequent episodes) were seizures she started taking some of the anticonvulsives people have already mentioned.  During the course of figuring all of that out she was without her license and dependent on people for transportation, etc.  She was single so the loss of independence was profound.  She was in cycle of seiizure / license supension / lack of seizure / license reinstatement / another seizure / lose license, etc for years.    She even had a couple of seizures while driving during those periods when she had been seizure free long enough to have it reinstated. Thankfully no one was injured in either accident.

She had all the tests you indicated in trying  to figure out what was going on and how to control it.  Finally the medicine seemed to be "controlling" the seizures but even then they would occur 1 or 2 times per year which is just enough to be a real pain and move her back to not driving, etc.  That went on for 5 or 6 years and really drove her to the brink.  At some point the seizures started to be more frequent despite the medicines and no new combos of medicines were effective either.

I can't remember how she was referred but ultimately she was referred to someone at UT Southwestern who felt she might be  candidate for surgery.  They performed several tests/ procedures to try to isolate the triggers or at least the flashpoints in her brain that relayed the seizure stimulus to the rest of the body.   Ultimately she had a right hippocampus removal about 6 or 8 years ago now and after a couple of seizures (one of which was the worst she ever experienced) in the first 6 or 8 months post surgery she has been seizure free for years.  She has a genius level IQ and the biggest impact she had after surgery is that she lost memory of several common words which she will still forget from time to time (eg. at a restaurant when she needs a straw she might say, "can you bring me, um, ... one of those things you put in your drink so you can get the drink into your mouth".)  She started and finished a masters degree with honors post surgery and is really doing well.  Very proud of her.

I think the ultimate moral to her story is keep fighting and getting medical help until you find help.  No idea on the CBD oil, etc. but I would definitely explore any options that are available to you.

Another observation over the years with her was the importance of taking care of herself in reducing / preventing seizures.  if she was stressed / not getting sleep / even just getting sick (ear infection / cold / flu) it could have an impact on whether she had seizures.

I'm sorry man, but hang in there and keep us posted.

Carbs are proving to be the devil.  Hail Satan!

[Patrick Bateman 3,933]

On 6/6/2018 at 12:23 AM, Superhero said:

I wasn’t on Lamotrigine for very long. Started taking it April 21st with really good results. The initial dosage was 50 mg/day; 100 mg/day after 2 weeks. I was at 100 mg/day until the grand mal, and now the doc has me at 200 mg/day. I’m not sure what is a therapeutic dosage.

During this time, I had focal seizure symptoms for a weekend in early May, and of course the grand mal on 05/30. It’s been much more effective than Keppra and Trileptal. I feel like a fog has been lifted from my brain, and I’m MUCH sharper at work. Many of my coworkers have noticed a difference in the past month.

As for my work, it’s relatively stressful. I’m a director in my company, and I run our regional estimating department of 15. There’s the regular resource management BS, I review almost every RFP that goes out the door; and will jump in to run the major pursuits. It’s stressful when we’re up against deadlines, and the past month, we’ve stayed at the office past 9PM more times that I’d like. When I’m not on projects, I’m overseeing training and process improvement, and the fun job of dealing with people’s problems. In short, I don’t get to surf Surly at work.

Thankfully my co-director is back in the office from a job, and another coworker was recently promoted to VP. Both of them are a God send at this time to help take some of the load off.

There hasn’t been a real shift in diet other than reintroducing caffeine. But like I said, we worked a lot of late nights, and turned around early the next morning for meetings in LA. I didn’t do myself any favors over Memorial Day by binge watching shows ‘til the wee hours. I think the exhaustion is what got me, but it could be a myriad of things.

Circling back around.  As you are well aware, all treatments are specific but 200 mg/day is a fairly low dosage.  I'm going to guess, b/c you like the medicine and it seems to have some measure of effectiveness, that your doctor may increase your dosage.  400 mg/day can be quite normal and there are some that are even up to 500 or 600 mg/day.  The loading phase for the drug generally is about 3-4 weeks b/c they want to ensure you don't suffer from the side effects, notably, really nasty skin rashes, which you haven't presented.  Reads like you were doing well but had a really busy time in your life and the lack of sleep, stress, and re-introduction of caffeine into your system may have lowered your threshold.  My friend really feels the non THC CBD oil has helped and, again, feels the Lamotrigine has been easily the best medicine they've been on.  If the doctor agrees, you may want to increase your dosage, try the CBD oil (doctor probably won't reco but won't care either), and of course try and stay on course of getting regular sleep and reducing stress.  Such a tough, tough balance for wellness and you have my respect and best wishes..... Keep up the good fight.

One other question.... are you eligible for the surgery?

Edited June 7, 2018 by Patrick Bateman

[Superhero 8,884]

10 minutes ago, Patrick Bateman said:

Circling back around.  As you are well aware, all treatments are specific but 200 mg/day is a fairly low dosage.  I'm going to guess, b/c you like the medicine and it seems to have some measure of effectiveness, that your doctor may increase your dosage.  400 mg/day can be quite normal and there are some that are even up to 500 or 600 mg/day.  The loading phase for the drug generally is about 3-4 weeks b/c they want to ensure you don't suffer from the side effects, notably, really nasty skin rashes, which you haven't presented.  Reads like you were doing well but had a really busy time in your life and the lack of sleep, stress, and re-introduction of caffeine into your system may have lowered your threshold.  My friend really feels the non THC CBD oil has helped and, again, feels the Lamotrigine has been easily the best medicine they've been on.  If the doctor agrees, you may want to increase your dosage, try the CBD oil (doctor probably won't reco but won't care either), and of course try and stay on course of getting regular sleep and reducing stress.  Such a tough, tough balance for wellness and you have my respect and best wishes..... Keep up the good fight.

One other question.... are you eligible for the surgery?

Eligible for surgery? Probably. At least my doc had suggested it in the past if my focal seizures didn't respond to medication. But I declined because at that point, we had only tried 2 medications, and I had read from other seizure sufferers that they had gone through at least 5-6 different drugs to find the right formula.

I've heard about CBD oils from several sources now and will ask my doctor about it. If she doesn't approve, then perhaps I can get one of the many physicians in my church to write a note in case I'm get picked for a random drug test.

[Newdoc 3,464]

I realize everyone’s jumping on the CBD oil but there is no good evidence it is any better than other epilepsy medication.  Could it help? Possibly, but there are plenty of non responders to CBD oil as well. 

[Chewbacca 7,789]

I realize everyone’s jumping on the CBD oil but there is no good evidence it is any better than other epilepsy medication.  Could it help? Possibly, but there are plenty of non responders to CBD oil as well. 

I don't think the has been a lot of research done, although that is changing. And the federal schedule 1 bullshit doesn't help, either.

Personally I'm in the 'it can't hurt' camp, and it might help quite a bit.

[PRONG HORN 3,160]

27 minutes ago, Newdoc said:

I realize everyone’s jumping on the CBD oil but there is no good evidence it is any better than other epilepsy medication.  Could it help? Possibly, but there are plenty of non responders to CBD oil as well. 

 

Maybe because big pharma wont allow it?  Just guessing.  Sort of.  

 

Edited June 8, 2018 by PRONG HORN

[Newdoc 3,464]

8 hours ago, PRONG HORN said:

 

Maybe because big pharma wont allow it?  Just guessing.  Sort of.  

 

Certainly that can be in play, but think of it like a drug because that's what it is. Same thing for caffeine or alcohol.  Take out the THC and hopefully you get the legalism off of it.

Then study it. The good news is that there aren’t a lot of development cost on it so big pharma might not be able to stop it. Bad news is that CBD oil lends itself to group thinkers where, like apple cider vinegar, it likely has some good uses, but it ain’t curing everything.

Hope the OP can get some answers and effective treatment including lifestyle modifications that mitigate the events.

[Patricio Swayze 17,058]

I realize everyone’s jumping on the CBD oil but there is no good evidence it is any better than other epilepsy medication.  Could it help? Possibly, but there are plenty of non responders to CBD oil as well. 

What are the side effects of those medications?

I think CBD oil or other cannabis products have zero risk and could possibly help, so why not?

[BigDHornfan 6,565]

Sorry to hear SuperHero.  This thread hits close to home with my 5 year old son recently diagnosed with epilepsy.  He's been on Depakote since the beginning of May (1 in the am and 2 at night) and he's been seizure free since being on it.  We now know that for the last year or so, he was having a lot of Absence seizures and we weren't aware of what they were.  He would just appear to zone out for a few seconds and he would say afterwards that he was "falling by himself" and we didn't know what to make of it.  He had a full seizure one day and we went to the ER and he had 3 more while waiting on a cat scan.  Had an EEG and MRI the next day and that was when he was diagnosed.   Neurologist told us that there is a good chance he could outgrow it by puberty.   Hope so.  Not a much worse feeling in the world than watching your child in the middle of a seizure and you can't do a damn thing to stop it.

[Dolemite 143]

On 6/5/2018 at 11:23 PM, Chewbacca said:

CBD oil does not necessarily need to have THC in it.   Some does,  some doesn't.  And aren't you in CA?  It's legal,  yo.

Lots of people in CO have seen amazing results with CBD oil treatment for seizures.   Can't hurt to try it. 

Friends brother has a daughter with epilepsy. CBD Oil has worked wonders for her and he highly recommends. 

[blacklab 11,957]

My son is 7 now and has had seizures since he was 5. We've gone through every single drug and not one worked for him. Some stopped the seizures but made him a zombie, others didn't stop them. About a year ago we put him on a keto diet and it worked great for him. About a month ago we weened him off his medication and he is now drug free and the keto is controlling it. 

We are going to look into the cdb oil though, as it's hard to make a 7 year old not eat any pizza, french fries or ice cream.

[Superhero 8,884]

43 minutes ago, blacklab said:

My son is 7 now and has had seizures since he was 5. We've gone through every single drug and not one worked for him. Some stopped the seizures but made him a zombie, others didn't stop them. About a year ago we put him on a keto diet and it worked great for him. About a month ago we weened him off his medication and he is now drug free and the keto is controlling it. 

We are going to look into the cdb oil though, as it's hard to make a 7 year old not eat any pizza, french fries or ice cream.

I've been modifying my diet - significantly less carbs; I eat an avocado in the morning, drink a glass of milk, and snack on nuts throughout the day. Surprisingly, I'm not as hungry as I thought I'd be. Going without carbs will be tough... I can easily give up potatoes, possibly rice and breads, but mama mia, giving up a good plate of pasta... kill me now!

And blacklab, good seeing you here, and good luck to your son. I read that most kids grow out of their seizures. Hope your boy can keep his hands on all the tasty stuff long enough. 

[blacklab 11,957]

He started out at 10 carbs a day, but we've moved him up to 15 and now to 20. 

There are some tasty low carb things out there.

https://knowfoods.com  has a bunch of different things, including low carb pasta which I've used to make macaroni and cheese for my little man.

https://www.ruled.me/keto-recipes/  has a bunch of good recipes. I've made pizza and chocolate cake from here, both of which were hits for him.

[Ifiwaspresident 57]

My 19-yr old has been epileptic since birth. Someone upstream said something about the fear of helplessly watching your child seize. A parent’s fear truly is the most perfect fear. It cannot be improved upon.

We have been with UT Neuro in TMC the whole time, and then they’ve been great. He has run the gamut from Phenolbarbitol to Depakote to Lamictyl over the years. He’s currently 2500mg OID of Keppra and his seizures are controlled (sounds like the dosages you are taking may still be suboptimal - it takes them a while to ramp up to optimal dosing). He is actually at Camp For All right now as a counselor during the epilepsy week. Epilepsy has had profound effects on his executive processing speed and short term memory, so your symptoms aren’t surprising.

I can echo in the strongest way possible that a lack of sleep (both quality and quantity) or disruption of your Circadian Rhythm are the quickest route to breakthrough seizures. Take the best care of yourself as you can.

Have your doctors checked for lesions just to make sure you don’t have an underlying condition like MS, etc?

T&P’s to you as you’re going through this amigo. Just want you to know that you aren’t alone and people are thinking about you.