feeling horrible today..last night was bad..

[Georgiagirl88]

Hey ya'll...

I am just writing to unload..and for support. I felt my weird feelings late in the afternoon and into the evening.
My pre-seizure feelings come much earlier for me.( Not just moments before.) I get dizzy-headed...weak feeling...jittery and all over weird. Sure enough I woke last night with it. I still have alot of trouble distinguishing everything. I went yrs. being incorrectly diagnosed. My seizures are really weird. The ones I know about are nocturnal and wake me up. The Dr. said I may be having them in the day and not know it. I do have space out staring spells here and there. But they seem to go on for long periods when I wake from the seizure. I don't understand if I am still seizing or just feeling horrible and weird. It can all be confusing. After I have them.. for the next day...I feel just terrible. Headache,extreme weakness, nauseated, cold or hot, shallow, Just in a fog. I am going to write it all down, (there are alot more odd things) and show the Dr. at next appt. I am hoping the lamictal still hasn't kicked in since I am feeling bad. I'm only finishing 2nd week and I guess it can take 6 wks. to stabilize. My hubby went to work..kids off to school and I just feel sorry for myself! : (( One of those crappy days!!! God, I feel like a whiner!!!!! Thanks for listening ya'll!! I know everyone has different seizures/situations, but I do know you understand. Thankfully, my husband and children are great and helpful and compassionate. I think you really learn alot about people in your life when something like this comes up. Do you know what I mean? Some people act like they could care less and as though nothing has changed or the fact that you are really having a hard time. Feeling bad , can't drive and simply having to go through seizures! They are the selfish ones though. I am SO glad I am not like that. Sorry for my long unload! : ))) Thanks again for being supportive!! It truly helps!!

Michelle

[skillefer]

Hey Michelle! Never worry about unloading here. We all have crappy days, and understanding is one of the things we're here for.

[mamaruns]

I understand completely how you feel, Michelle. I think we're in the same boat right now, I've been having long auras (ones that last most the day) for the last few days and every morning I've been waking up feeling especially icky. Ugh.

I hope you feel better soon!

[Georgiagirl88]

Thanks for the reply,
Is that what they are? I've had seizures (undiagnosed as I mentioned)for yrs. but all the info. is new to me. What do yours feel like, if you don't mind me asking. I am trying to see what others experience and I think it'll help me know mine are not out of the norm I guess. So much to learn and understand if things are normal for seizures. I hope you feel better too. I truly understand the icky feeling!

Thanks again!
Michelle

[mamaruns]

The preseizure feeling I get for my "bigger" seizures is a lot like you describe - just feeling weird, dizzy, weak, "buzzy", sick to my stomach, sometimes I hear buzzing in my ear....it's hard to describe to people, it sounds a lot like anxiety but it's not, it's a different sickening feeling. Luckily I haven't had a bigger one for a couple of years (that I know of), just the smaller ones. But lately I keep getting that feeling of a bigger one coming. I honestly don't know if something's happenning in my sleep or not, but if it is, it's not waking me up.

I was undiagnosed for a number of years too....was actually just dx'ed last Nov. I spent a long time just telling myself it was in my head so I too am just grasping the reality of all this. Coming to places like here makes me feel a lot less alone it it.

[Georgiagirl88]

Thank you so much! I had the buzzing/ringing in my ear yesterday also. I asked my 13 yr. old if she heard it and she said No. I know what you mean...it is very hard to explain. Just very unwell feeling. I went for yrs. with Drs. telling me I had anxiety/panic/crazy in my head ..you name it. After a while you start to believe it. Although deep down I always knew in my gut I was right and something was wrong. How frustrating. Mine is temp.lobe and the Drs. said this areas can cause all sorts of odd feeling,symptoms,sensations. I also seem to get small staring spells/slight check outs (are these absence ones) I was dx'ed around Oct. they suspected it then and after 2 more eeg's had confirmation. The last one stopped my driving for 6 mo. about 3 1/2 wks. ago. UGH! In fact I don't think my 6 month period has begun. Oh well.. I just want to feel better and gain control of all this. That's great you have not had any bigger ones lately. Hopefully it'll continue and the smaller ones will go away as well. Thankfully our children are great kids and older 13 1/2 and 161/2 .I just turned 41 in Dec.

Talk soon!
Michelle : ) Feel Good!!!

[mamaruns]

Thank you so much! I had the buzzing/ringing in my ear yesterday also. I asked my 13 yr. old if she heard it and she said No. I know what you mean...it is very hard to explain. Just very unwell feeling. I went for yrs. with Drs. telling me I had anxiety/panic/crazy in my head ..you name it. After a while you start to believe it. Although deep down I always knew in my gut I was right and something was wrong. How frustrating. Mine is temp.lobe and the Drs. said this areas can cause all sorts of odd feeling,symptoms,sensations. I also seem to get small staring spells/slight check outs (are these absence ones)

Oh I know just how you feel! I have temporal lobe epilepsy too, and deep down I knew I wasn't crazy. It's frustrating when you know something isn't right, but doc's don't believe you.

I don't get the staring spells like you, but I do get brief periods of altered conscienceness....my mind feels "stuck" like a record player for 30 seconds or so, and I can't speak, it's hard to move, and I get an odd feeling. Sometimes I get odd phantom sounds (i.e. music, muffled voices, sounds of the alarm clock). This is mostly what my little ones feel like.

[mamaruns]

Another thing I forgot to mention is, when I have these little spells, or auras, my husband says my left pupil dialates. Does that happen to you too?

[BuckeyeFan]

Hang on GG. I have never had any audible auras, but scattered auras over a couple of days can really drain a person. Remember that an aura is actually a type of seizure (see epilepsy 101).

Everyone keep leaning on each other and we can't fall.

[brain]

Hope you're getting to feeling better
and soon! "E" is no fun!

[moxiecat74]

Hey,

My auras tend to be a sensation that something is wrong. I'm not sure what but something is not right and I would get jittery. My seziures were/are weird. I would talk about non-exisant people and become very aggitated. I had a misdiagnosis of panic attacks for 3 years. Finally my doctor realized that the Prozac wasn't working and sent me for an MRI. I was correctly diagnosed last October with Partial complex seziures caused by a very large benign brain tumor. My EEG's never showed anything unusual, but the MRI sure did. I just underwent major brain surgery in Jan. of this year to remove the tumor. Still recuperating from that ordeal. Before the surgery I was on lamictal and it was awful. I am now on Keppra and all is good. Fingers crossed! I had people react to me the same way as they seem to be reacting to you. Most people that I worked with just thought I was a little wacky. They just didn't seem to grasp the enormity of my situation. There were some good apples in the bunch though. Not driving is AWFUL. I live in the middle of Nowhere, USA. I had a 30 minute drive to work. I really miss driving. I also miss working although I used to complain about my job a lot. I am a high school Biology teacher. I actually miss the kids. They drove me NUTS, but I miss them. I wouldn't take Lamictal again for a million $$$. It made me want to find the nearest bridge and jump off of it. Don't feel bad for unloading. That is what we are here for. I feel like a dump truck sometimes as much as I need to dump on people about my situation. I have only had 1 nocturnal seizure. as far as I am aware. Talk about weird!! I hope that things improve for you. Try not to be too hard on those people who just don't get it. "E" is very scary and foreign to most people. Keep on keeping on. Don't give up hope.

Moxiecat

[Georgiagirl88]

Hi Mama,
At times I will have brief stuck or frozen feelings. I also get stuck searching for a word or thought and just cannot process it. I consider myself a fairly smart lady and it is really annoying. Now I do get the inablility to speak and move at times usually with my night seizures. Not every time. This really helps me alot to know others have similar experiences. Thanks so much!

Michelle

[Georgiagirl88]

Thank you for the virtual hug and encouragement!! I napped this afternoon and feel a little better. Hope I can sleep tonight!!!

Michelle

[Georgiagirl88]

Hey Moxiecat,

Thanks for your note! My feelings are just weird and nothing feels right..so many strange things. It is crazy how often people get misdiagnosed. I was labeled Panic for yrs. I sure hope you are doing better after your surgery. I am sure you are glad to have it behind you! Will you be able to drive again do you think? I am hopeful to. It really stinks and is so hard to not be independant. Thankfully our son (almost 17) is also now driving which is helpful. He's a great kid! Both children are really wonderful, helpful and I try not to bring this on them as a burden or horrible thing..more something I have and will deal with. I usually stay really positive, the times that I feel down are right after the seizure for a day or so. It is a hard thing..but I always try to remind myself..I am not paralyzed or dying...there are so many worse situations. I hope you are feeling much better and continue to improve from your surgery!! Thanks again!!

Michelle

[Georgiagirl88]

Thanks Buckeye,

I appreciate the kind words and help!! I was actually born around Cleveland, so I guess I was a Buckeye for a short time. Now I guess I'm a Ga. Peach! : )) My family moved to central florida when I was 3 and I lived there until my husband and I started transferring here and there and ended up near Atlanta. I love it here. Wonderful city! I really would like to come up and see where my family was from at some point.

Take care!!
Michelle

[BuckeyeFan]

Georgia is a beautiful state. If it weren't for my deep family roots here, I would move south tomorrow. I am not a fan of the cold weather up here.

However, remember once a Buckeye, always a Buckeye. Even if you are a little bit peachy.

[Cinnabar]

No. You're not a whiner! We all need to say ouch! One of the most embarrasing parts of my Epilepsy is incontenance while sleeping. My Dr. says I'm seizuring in the night. Is there any respite from this Epilepsy? Sometimes, in the morning, I wake up dizzy. I'm sitting up and the next thing I remember I'm laying in the bed paralized for about 2 minutes. Does anyone experience any or all of these symtoms? Laurie

[Georgiagirl88]

Hey Laurie,

Thanks for the message. Today is a little better than yesterday thankfully. I get dizzy/swishy -headed alot ..I fortunately have not had incontinance.The Drs. always ask me that though, so it must not be too uncommon. I will say that sometimes after seizures after I am able to get out of bed (my worst are nocturnal) I have to go to the bathroom right away.Very unsettled stomach feeling. Sometimes diarrhea. And I do feel paralyzed some times in my nocturnal seizures. I actually replied to your other post about memory. I'm the girl that mentioned losing at Jeopardy. This sight has been really helpful for me. I've had the seizures for yrs..but they were incorrectly diagnosed. I hope you are doing well!

Michelle : ))

[brain]

Glad to hear you're feeling better!

[Georgiagirl88]

Thanks Brain! I took a great, long nap yesterday afternoon and that helped alot. I grew up in Winter Park
(near Orlando) Did I tell you that already??

Michelle