Im tired of this, I had a seizure last night and a small one this morning

[Jill]

I am exhausted. I have never talked to anyone about this. I am 35 and I am diagnosed with both epileptic and non-epileptic seizures. I am feeling exhausted and depressed. I am so sick of this. I have been taking phenobarbitol and tegretol as well having klonipin for chewing at the onset of a seizure (aura when poss). I am recently in a newer relationship that I believe is the"one" for me. I dont want to scare them away. I could use someone that actually understands this and just some support...
oh sorry, my name is Jill. Take care everyone!

[epileric]

It's good to have you here Jill. What you described sounds like what I've just gotten over. I've been getting at least 1 nocturnal seizure a night plus a couple more in the day. I've been getting extremely frustrated but I can't figure out what's causing the cycle of tons of seizures then down to my norm (which is about 1 a day). I have noticed that the longer this goes on the more frustrated I become, even during the seizure.

To try & figure out what's triggering your seizures you should keep a schedule of when you:
go to sleep & wake up,
when/what you eat,
move your bowels,
start/end your cycle
have a seizure.

Hopefully that will help you find your triggers. Meetz (one of the other members) has a good list of what to do & not do that should help. I'm sure she'll be around soon.

[Jill]

Sleep deprivation is the number one, then stress and i havent noticed food as i try to stay away from sugars... I havent been able to work in some time without going back on ssi (still waiting) and these meds are making me sick to my stomach....nausea and vomiting... i told my neurologist, however< due to my lack of ability to obtain insurance, i dont have a choice as to what i do... did i mention that i am in a cast for creaking my ankle (not seizure related), and this past Sat i was coming into the house and slipped on the darn crutches and broke my coccyx (tailbone) SUCKS!!!!!!!!!! on top of that Im trying to do the best I can with attitude of optimism around my partner< however, I am feeling like I am in a hole and no rope in sight..... HELP!!!!!!

[epileric]

You really have had a hard time recently.

I'm on Tegretol as well. Do you take it after having something to eat? That's how they recommend to take it (though I'd been on it for over 10 years by the time the pharmacist told me).

[Jill]

i stopped the keppra because it made me suicidal....thus the dr"s started questioning having psychogenic seizures as well..... my partner brought info on those home as well and I can see where the differences are, but it also makes me feel non-validated as to the sufferung that we go through with seizures.....I fight the sleep after the seizures and end up feeling like crap the whole next day so I dont look "weak" has anyone been here before? I did start therapy to take care of myself as well.

[Nakamova]

Hi Jill, welcome to the site --

You've come to the right place, lots of people to chat with and vent to, ask questions, offer your own comments, etc. I'm sorry you're having a hard time right now. Epilepsy is tough on the system, and then the meds are tough on the system too. I don't know how long you've been taking them, but phenobarb can make you tired, and tegretol can make you moody.

One thing that might be helpful is to keep a comprehensive journal to see if you can narrow down any particular seizure triggers, or things that are making you fatigued (in addition to the meds). Meetz on this site will give you the particulars, but the things to pay attention to include, sleep, diet/digestion, activities, all kinds of stress (emotional, physiological, positive, negative), hormones...

I've gone back and forth about when to let someone know that I have epilepsy. If you feel like you're getting close, it might be better to let them know in advance, instead of having them be freaked out or confused if they see you having a seizure. I know what you mean about "scaring someone away." There is so much misinformation out there, so I try to be pretty matter-of-fact and clear when talking about my epilepsy.

I hope you feel better soon.

Best,
Nakamova

[Jill]

I take the tegretol honestly with very little food. usually a banana or protein bar. I am just trying to deal with the med increase still and the nausea from that.

[Jill]

Hi Jill, welcome to the site --

You've come to the right place, lots of people to chat with and vent to, ask questions, offer your own comments, etc. I'm sorry you're having a hard time right now. Epilepsy is tough on the system, and then the meds are tough on the system too. I don't know how long you've been taking them, but phenobarb can make you tired, and tegretol can make you moody.

One thing that might be helpful is to keep a comprehensive journal to see if you can narrow down any particular seizure triggers, or things that are making you fatigued (in addition to the meds). Meetz on this site will give you the particulars, but the things to pay attention to include, sleep, diet/digestion, activities, all kinds of stress (emotional, physiological, positive, negative), hormones...

I've gone back and forth about when to let someone know that I have epilepsy. If you feel like you're getting close, it might be better to let them know in advance, instead of having them be freaked out or confused if they see you having a seizure. I know what you mean about "scaring someone away." There is so much misinformation out there, so I try to be pretty matter-of-fact and clear when talking about my epilepsy.

I hope you feel better soon.

Best,
Nakamova

thank you< i told my partner when just before we started to date. I felt it was only fair.

[Nakamova]

Psychogenic seizures are "real" too. Your brain is misbehaving even if causes are different than in other kinds of epilepsy. But just because you were suicidal on the Keppra doesn't mean that you seizures are psychogenic. My moods were affected by one anti-epileptic drug medication that I was on, and my neurologist decided that that meant I was emotionally unstable in general (not at all the case!). I hope you get things figured out soon.

[epileric]

just because you were suicidal on the Keppra doesn't mean that you seizures are psychogenic.

I have to agree with that. Suicidal thoughts is a side-effect of Keppra. One that I also got when I was on it.

[Jill]

Psychogenic seizures are "real" too. Your brain is misbehaving even if causes are different than in other kinds of epilepsy. But just because you were suicidal on the Keppra doesn't mean that you seizures are psychogenic. My moods were affected by one anti-epileptic drug medication that I was on, and my neurologist decided that that meant I was emotionally unstable in general (not at all the case!). I hope you get things figured out soon.

thank you sooooooooooooooooo much! I was thinking of showing this to my partner, so she realizes that others have been diagnosed with both... i had 5 neuros say epilepsy, 2 said both and 2 said only non-epileptic..... as if i would fake this SH1*!!!!!!!

[Jill]

can you get suicidal and depressed and crying all the time from tegretol and or pheno?

[epileric]

I've been on Tegretol for decades & I am a very moody person. I was also on phenobarb for a short time when I was a kid (I'm guessing around 10 yrs old) but I remember it because I went from being very passive to being very angry & violent.

Hopefully these sites will help give you the info you need about your meds. There are lots of other sites as well that give you the low-down on whatever pills you need to know about.



http://www.drugs.com/drug_information.html

http://www.drugdigest.org/wps/portal/ddigest

[Bernard]

Hi Jill, welcome to the forum.

can you get suicidal and depressed and crying all the time from tegretol and or pheno?

Suicide Risk From 11 Epilepsy Drugs

[dfwtexas]

Hi Jill and welcome,
This is a great place for support, understanding and gaining knowledge. I got diagnosed last year at age 47. When I found out, I searched for info and support and this was the best place I have found.
First, you need to call your neurologist right away! I understand your situation with insurance and all...but the rule my neurologist has is one seizure and I call him. He explained while it's just one, that could be a sign that my meds need adjusting and there could be more seizures to come if I ignore it. I have gone thru several adjustments to my meds in the first 15 months of having seizures.
I am on Keppra and there was some adjustments with moods when starting and when it is adjusted. I think most seizure meds have some effect on moods, depression, anxiety, etc. If your neurologist is not paying attention, you need to get one that will listen to what is happening and will work on getting you and your meds to get along.
I understand what you are going thru, I have history of depression for years now. Feeling overwhelmed makes it all seem worse. You need to focus on the top three things that need to be addressed right now and everything else can either wait or someone else can handle. Therapy is great and working on that certainly needs to be on the list.
Lack of sleep is a huge one for me. I have learn to prevent those issues by educating those close to me the importance of my sleep. There are times I leave a gathering early because I need to be home and in bed. On the weekends, I take a nap. If you don't sleep at night, then you go to bed and sleep all day if you need it. Know when you need sleep, it is important to your health and you have to have it just like taking your meds.
Know we all here understand your emotions and are here for each other. I will say a prayer for you...know we do really care.
Jenn

[Jill]

thank you Jenn, I called my neurologist and the office is closed...that is the plan for tomorrow...i was on 600 mg of tegretol and my levels were 1.8 ish! so he increased me on both meds... I have had severe moods (especially crying) that I thought were related to my ptsd< of which im sure are a some what related... my dumb ass was so sick of meds, keppra, carbatrol and pheno and synthroid (hypo) but i was so sick of the nausea and vomiting, that I the stopped all the meds, not only for the horrible emotional feelins, but as well< i was sick of taking poison! I know it was stupid and my body lost so much weight (100lbs @5'7") and i gained it back.... i started with my synthroid, and 1 20mg pheno and 1 200mg tegretol...as per my instrustions (not dr's)... moved to a new place with my new partner, had a tonic clonic and ended up in the f_ing hospital where the neurologist called it a psychogenic seizure.... now I TOTALLY disagree with her and found a cash sliding scale neurologist who is very nice, however< because of my past ptsd, i dont want them just assuming that im faking it! that has to hurt more than anything... who in their right mind would do this??? I really thank you for your support and info... I tried as soon as i read your post to call my neurologist and they are closed (EST here)...that will be my 1st priority in the morning... please keep in touch...I dont know ANYONE HERE that has epilepsy that truly understands that Doctors are not always right......ESPECIALLY er docs... pupils i saw on my report were a 9? what does that mean? thanks again Jill

[Nakamova]

Jill --

Psychogenic seizures are not "faking it" (even though they are also called pseudoseizures, which makes it sound that way). In very rare cases someone might fake a seizure, but the standard definition of a psychogenic seizure is one that is caused by psychological stresses. The brain doesn't show the electrical activity that's found in other kinds of seizures, but the physical result, caused by psychological stress, is a real seizure.

Nevertheless, I agree with you that your seizures are probably not psychogenic in origin. One way that neurologists figure this out is by using EEGs and MRIs to look for abnormal patches and activity in the brain. However, even if no abnormalities show up on these tests, that doesn't mean that the seizures are psychogenic. There are folks on this site who have never had a positive EEG, but definitely have non-psychogenic epilepsy. If your seizures respond to anti-epileptic drugs, then that's another indication that the seizures are non-psychogenic. And even THAT isn't conclusive -- it can take a long [frustrating] time to find the right combination/dosage of meds.

Good luck, I hope you get good help from your neurologist.
Best,
Nakamova

[Nakamova]

BTW, Dilated pupils are a sign of some kinds of seizures (and also a side effect of phenobarbital). The "9" most likely means that the pupils were very dilated (though you might want to ask your neurologist tomorrow).

And believe me, I definitely agree that DOCTORS ARE NOT ALWAYS RIGHT. Don't get me started...

[Jill]

i would love to talk about dr's being wrong.....i plan on having my partner read this....after that is for me and monly.....please any feeback from mis diaginosis (simple partial) or f'd up comments from others.... would help her to see what the truth really is......PLEASE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Nakamova]

Well, for starters here are two examples of less-than-stellar doctoring:

#1: My neurologist put me on a drug called Zonegran. I tried it for about 6 months. It made me cranky and depressed and slow, but mostly it made it very hard for me to eat and drink -- it was an appetite suppressant and it made my stomach really hurt. I was about to ask my neurologist if I could change meds, but before that happened I had a massive seizure. I was dazed and confused after my seizure and worried that I had missed a dose -- I called my neurologist from the ER to ask if I should take another dose right away, and she said yes. Turns out that was completely the wrong thing to do, because there was plenty of the drug still in my bloodstream (and she knew that because of the drug's half-life), and would have been for another day or so. Taking the extra dose made me incredibly dehydrated, and I had to go the ER for a second time. Later my neurologist accused me of taking the extra dose on my own, but my sister was there and witnessed the neurologist's bad advice. #2: My neurologist then insisted my seizure happened because I wasn't on a high enough dose of the Zonegran, but I am 100% positive the seizure was from my incredibly low blood sugar, which is one of my triggers. If I had been on any more of the medication, I would have starved.

There are more examples, and other folks on the site probably have some related to misdiagnoses -- you might want to start another thread to hear specifically about them.