I'm scared

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Liffa

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So I'm new here.

I just got a new epileptologist and I really liked him. He started me on Keppra and this is my second day. I'm SO draggy and drowsy and weak.

HOWEVER, I was already feeling very sick because I might have Addison's disease and saw an endocrinologist today, although I was NOT diagnosed with it, but we gotta rule it out with a lot of tests next week. I can't sort out the symptoms....what is caused by the adrenal disease and what is caused by the Keppra?

As long as my blood pressures are stable, then my adrenals are not going into crises, so the nurse practitioner told me to keep doing that until we can get more tests run and start treatment. So, my BP is good right now and that makes me feel a little better emotionally.

And now I took a Keppra about 5 hours ago and am so draggy and feel so out of control. My sister drove up from out of state 400 miles to stay with me this week so at least I'm not alone, but I'm so scared....I hate strange side effects of drugs, and I have TLE so my seizures are weird to begin with.

Been to the epileptologist AND the endocrinologist this week, have had so many labs done I'm bruised all over.


I guess I would like some reassuring that the drowsy, weak side effect of Keppra goes away pretty quickly. (Take Trileptal, too and will be tapering off of it if I can tolerate Keppra.) I don't want to hear about Kepprage. I've read about it, I'm worried about it, and I'll cross that bridge if I come to it. I just need to hear that it is NOT a horrible drug for everybody. I need to hear that the weakness and drowsiness will go away soon, so that I can differentiate between Keppra side effects and Addison's disease symptoms.
 
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Keppra is a good drug. try to give it a good chance at least 10 day's.
It's good that your sister will be there with you. She can monitor you of any changes.
Best of luck with the Keppra.:hugs:
 
Hi,

It normal for you to feel scared going through all this.
You are not alone.

It takes our body's a while to get use to these meds. If after two weeks you might want to talk to your Dr. about another. Now saying that... all these meds. have side effects.

I have the same type of E. as you do.

Are you keeping a seizure diary, this will help you and your Dr.
Note not only your seiz. but also any triggers such as lack of sleep, infection, stress, some foods, some over the counter Vitamin. just like the meds. each one of us have diff. reaction to the diff.triggers.
 
Thanks for writing. I keep a diary of a lot of things right now as part of the diagnosis process for Addison's, too. Blood Pressures, temperatures at 3 hour intervals, med doses, and what I ate. I jot in there when I have a seizure. I had a mild one a couple of hours ago.

For sure lack of sleep and stress get me. My new doc said that the generic Trileptal probably caused me problems, too. He said there is a HUGE variance from one refill to the next if the drug store uses different companies each time. He told me to insist that the refills come from the SAME company if you use generic. So, I'm going to start telling them a week or two ahead that I will need a refill and they need to order it from the company that the last refill was done with. He said he can sometimes convince the insurance companies to cover the brand name if the seizures keep breaking through. My family doc tried that to no avail, however.

Anyway, the drowsiness is wearing off now, so I'm sure the Keppra is responsible for that particular symptom and not the adrenal problems, but the weakness has been a constant in my life for the last 6 weeks. The tests next week will help us know more about what is causing that.

Thanks again for the reassurance...I'm glad I found this forum. :)

The whole thing is very scary...I hate this problem....
 
I asked Phar, to tag my record that I could ONLY take klonpan made by this one company. I also to.d my Neur. to tag my records so when writes a refill to out the band name on it.

Have you had your Vit. B12 levels checked?

the anti-seizures meds deplete our body's of the needed Vit.
 
I'll have my record tagged...excellent idea!

I'm on B-12 shots right now. I try to do complementary approaches to orthodox medicine. I find that magnesium (Calm brand, which is a drink powder) helps me a lot. My family doctor is an osteopath who uses nutritional approaches along with medicine, so she is the one that determined I needed the shots. My husband is a nurse so he takes great pleasure in sticking me on a regular basis.

The later in the evening it gets, the better I'm feeling so I think the Keppra is really kicking my butt....I'm going to really give it the old college try however and try to acclimate to it. My doc said he thinks he can get me down to less than 1 seizure a month if I can tolerate it. What would THAT be like!!!!! I'd be happy with only 1 a week, so that keeps me motivated, but this mixing it all up with the adrenal problem is very hard and stressful.
 
jyearta, how did you know WHICH was the best company that made the drug? Or were you just trying to get them to pick ONE, so that your body would acclimate to the same dose each time. Right now, I think even that would be an improvement for me.
 
Keppra is a good drug. try to give it a good chance at least 10 day's.
It's good that your sister will be there with you. She can monitor you of any changes.
Best of luck with the Keppra.:hugs:
I agree. Try to give it sometime. for me, it works wonders! :)
 
jyearta, how did you know WHICH was the best company that made the drug? Or were you just trying to get them to pick ONE, so that your body would acclimate to the same dose each time. Right now, I think even that would be an improvement for me.

I can only take band name on Dilantin, my Dr. had to write a letter for my insur.
With Clonazepam (which is generic for klonpan)
I notice TEVA brand of Clonazepam, my seizures were less, then on next refill 8 was given another band (can't remember the brand) I had more seizures. This is when I asked my Phar. to tag my record to only fill TEVA brand.
 
I agree. Try to give it sometime. for me, it works wonders! :)

:agree: I take 3000 mgs. of Keppra and have taken it for over 10 years now. But for me, it is name brand only. My pharmacist knows that.

I also see an endocrinologist because I have Type 1 Diabetes along with the E. So on top of the Keppra, I have to give myself insulin shots 5 times a day. :(

Make sure the docs and pharmacist all work together and work for you.
 
All of this is VERY good advice!!!

Thanks so much....I'm really interested in success stories with Keppra! ;-)
 
Here's an update. I have to have an ACTH Stimulation test on Tuesday to diagnose Addison's Disease. I talk to the endocrinologist office today and told them I was just starting Keppra and that it was kicking my butt in terms of making me very tired, weak, and drowsy. She suggested I contact the neuro to see if I can hold off on taking it until after the test, and a few others, so that we will be able to see if I respond to endocrine meds if I need them. My neuro's office said that was a good idea and since I had only had 3 of them, that I wouldn't need to taper. I can also add a little Klonopin as needed if I get a breakthrough seizure, which is what I've been doing for about 2 months anyway.

Soooo, I didn't take any today, but I have the foggiest feeling today. Could be I'm having micro-seizures (TLE) and don't realize it, but I'm wondering how long it will take for the Keppra to get out of my system. The fogginess is something I really haven't been having with the endocrine symptoms, so I can only guess it has something to do with the Keppra or maybe seizures.

Any thoughts on how long this small amount will stay in my system?

I'm just a mess, and am really getting very discouraged that I'll ever get better - we don't even know what's wrong with me yet. :-(
 
Never mind.....it was a dang seizure. :-( Took some klonopin and the unreality/fogginess went away in about 30 minutes. You'd think I know this by now after 56 years of them.

TLE seizures are so lonely....I just leave reality and go somewhere else and feel like I can't relate to anyone. My sister is here and tried to get me to tell her what I wanted for dinner, but I could barely acknowledge her or even think about what I wanted to eat. I don't know where I go, but it is very, very lonely there.
 
I'm sorry, Liffa. I know where you are.... I'm lonely in my TLE as well. You are not alone here....just try and remember that, ok? You have friends here. Big hugs to you!!! :)
 
Thank you BrandiBat...I've already found this forum helpful.

My husband, who is a psychiatric nurse, talked to one of the neurologists at the psych hospital last night, and he pointed us to some medical articles that were very helpful. I have the triple whammy of the seizures (forceps delivery) mitral valve prolapse with dysautonomia, and some sort of strange endocrine thing going on right now that is being investigated as possible Addisons. There is an actual study of people in the military getting mild concussive brain trauma who develop all of the above! (Probably damage to hypothalamus and pituitary in addition to other areas of brain that cause seizures.) Unreal! It is called Neuroendocrine Dysfunction (NED) and it requires doing exactly what we are trying to accomplish - treat the seizures AND the endocrine problems, and in so doing the dysautonomia symptoms will settle down, too. I've been very sick for 7 weeks now, and I don't know how much is left in me to fight, but I am finally feeling like I have some doctors who are getting close to figuring it all out. Have some scary tests next week in the hospital and then we will know a lot more. May need an MRI and they terrify me, so we gotta figure out how Im going to get over that hurdle.

Thanks again for the hugs....they really help. :)
 
Hi Liffa I was so pleased to see that you are finding this site a real help, it's great isn't it? I was interested to see that your temporal lobe epilepsy was also triggered by being a forceps delivery, I know they try not to use them anymore, too late for us two, but hopefully it'll help babies in the future. I know exactly how you are feeling, I also take Keppra and Trileptal. I have to say, the Trileptal has worked wonders for my simple partials and auras, they were always the most terrifying part of my epilepsy, like you say, going off into our own little worlds, I took my clothes off in public twice!!! Honestly!! I still have complex partials, but, now I am having Atonics/Drop Attacks, and they are horrible! no warning, nothing, I just find myself lying in the middle of the road, and I'm wondering whether to increase my dosage of Keppra. I can't really be negative about it, I never read the leaflets that come with the drugs, we are all so different, and with me, stress is the biggest cause of my seizures, I was 23 when they first started, when my parents divorced, that was stress! I've had a Temporal Lesionectomy, would you ever consider surgery? It's just that with a focus, you could be an ideal candidate, excuse my ignorance, but I only know what I Googled about Addisons. Anyway hun, Keppra has been ok for me so far, it doesn't work, but then, none of the drugs have over the last twenty seven years, it's just our luck that temp lobe is the most difficult form of epilepsy to control. I always think of people worse off than me, I couldn't deal with being blind, but I would like to get my driving license back one of these days! Keep in touch on here, its a fantastic site, and I hope you make some great friends, I certainly have. Keep positive, and keep smiling, there's always someone on here to share a problem with. Love Lainey XX
 
Hi Lainey, thanks for the good vibes!

What are a tonics/drop attacks? Do you lose consciousness? I've been having some weird things happening with my legs and feel like they are going to collapse under me.

Do you think the surgery was successful and worth all the stress, pain, and fear?

My doc wants to eventually get me off Trileptal and just on Keppra. Right now I'm having to add .25 of Klonopin 4 times a day to get through the day without a seizure. I can't tolerate the Keppra yet because of the weakness and drowsiness, and the endocrinologist prefers I hold off on adding those side effects for a few weeks until we can see about the Addison's tests. Addison's is a disease where basically your adrenals poop out - can be caused by a lot of things. I might not even have it, but I have several of the symptoms and have been very sick for over 7 weeks.

When did you lose your license? The doc didn't think I need to do anything about mine right now. My auras are very obvious and I have plenty of time to just pull over and take a stress dose of medicine until it passes. But just the same, I never drive more than 10 miles by myself - never have my entire life - became a homebound agoraphobic at one time because I thought I was having panic attacks and was afraid to be by myself much. But since I've been so sick these last several weeks I haven't driven anywhere, I'm just too weak. Just want to know WHAT is wrong with me.

Thanks again for writing! LIffa
 
Good To Hear FromYou

Hi Hun
Thanks for writing back. Basically, Atonics are where I lose muscle control (tonic) but don't shake (clonic) I just drop to the floor, and do lose consciousness, but they're more comon in middle aged women, have to keep reminding myself, that's me folks!
I can't believe you are allowed to drive, the laws are so different over there, it would only take one problem with an aura or simple partial seizure spreading to another part of the brain, while you were driving and god knows what could happen. I drove for a year from 2005-2005, and the second surgery was a Right Temporal Re-section, I always joke that I should have asked them to put a zip in the second time??!!
I was seizure free for five years in between and that's when I drove, it was worth the messed up hair style, it really isn't that painful as there's no feeling in the brain itself, and I'm only having seizures now as I am so stressed, and probably in the unhappiest most depressed part of my life ever, that sure doesn't help, but I don't have as many as I used to, the Trileptal has been fab in helping, and I wouldn't dare stop taking it in case my auras started again, although I do sometimes have "feelings" like I know when I'm in wobbly mode, and a big wobbler is due. I studied epilepsy with Leeds University for four years, as I wanted to learn as much as I could about it, it sure is a fascinating condition.
Do you have a lot of trouble with your memory? I bet you do, how do you cope with it, do you write everything down like I do? It's annoying isn't it, forgetting great chunks from your past.
Keep in touch hun, don't be scared, and I really hope you write to me anytime you want to, I'd love to hear from you ok? Lotsalove Lainey XX
 
....Just to add, the minute we have any sort of aura or anything untoward like that, we have to, by law, stop driving, there are no hard and fast rules with each individual person with epilepsy as to how fast the electrical activity may spread and "Secondary Generalised" activity may take place, so driving is a real no no here, I don't get any warning whatsoever, it may be hours later and I'll suddenly realise that I missed a few moments, then I'll get flashbacks. We have to wait for one year seizure free before we can apply for our license again, how long do you have to wait? I know it's different all around the states, that fascinates me too! Hope to hear from you soon. Luv Lainey XX
 
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