So tired... Can't think anymore!

[Rae1889]

I'm really tired guys. My seizures are right back at square one. I've had one monday and one yesterday *tonic clonic* and before that I can barely remember.
I have smaller seizures daily and I haven't been sleeping because of it. Melatonin hasn't been working so well as I lye in bed with my brain going haywire with thoughts. My wedding social is tomorrow, and I'm so nervous. My guts are churning. I know everything will be fine, but I'm not one to put on parties.

I had to give the DJ a list of songs he can't play *because they trigger seizures* and what he can't do with the light show *strobes and strong patterns* and I'm hoping he remembers. It feels like my stomach is holding my heart right now. I'm scared.

I have had my seizures in the morning for sometime. Usually between 7 and 10, around the time I wake up. I have come to realize its my alarm clock. For as long as I can remember, I have hated alarm clock. When I wake up to them, my heart pounds. Sometimes for an hour. I don't like being startled awake. Ideally, I want to wake up to kisses and cuddles, but If Chads not home *he works earlier than me* I'm out of luck and have to use that alarm. If its not loud, I don't wake up to it. Music I'm not taking a chance with as I don't usually wake up to it, plus with songs being able to trigger me now...

What can I do? I'm so lost. Square one should feel so familar that I should be able to deal, but I hate it being back here.

 

[BuckeyeFan]

Remember kiddo - square one also is the start of a hopefully successful E-free day. Don't fear the mornings, face them with the courage I have seen you show here. You can do it. :rock:

As far as the wedding social, not much help here. Even celebrations of life can bring on stress. Not an easy thing to just make dissappear. If you can, try some vigourous exercise. Let some of it loose.

Thinking of you.

 

[Nakamova]

I'm sorry Rae, I keep hoping you'll see the epileptologist sooner rather than later.

There's an alarm clock that makes the sounds of chirping birds -- maybe you could try that? I know it would still startle you awake, but maybe less stressfully. Once you're up maybe you could try listening to a soothing CD to help calm down your heart.

Studies show that blood pressure is at it's highest around 8 or 9 am, so that could be playing a role. And in the last hour before we wake, body temperature is at it's lowest. I don't know if there's a way to slowly warm yourself up in the morning, maybe that would help.

 

[Endless]

Oh, Rae. I'm so sorry the seizures are back. Is there a new trigger lately? Maybe the stress of the upcoming wedding? Even wonderful happy things can be stressful. I'm hoping that everything goes well for your social, and that it is easy for you. I also hope you get in to see your epi soon, and they don't make you wait so long.

<<hugs>>

 

[epileric]

Sorry to hear what you're going through Ray, it's been a few years since I felt like that.

I also hate alarm clocks. I sleep too heavy to wake up to one with pretty sounds (I really considered them) but there are a lot out there.

What I have now is one where the alarm starts of really soft & slowly gets louder and louder. It's great because it's not as jarring & tends to wake you up slower.

 

[occb]

*Big Hug*

 

[Rae1889]

Hmm, I may try that Eric. As I cant hear Chads alarm going off. its like little beeps while mine is like "ERR ERR ERR!!!!!" and vaguely reminds me of a fire alarm in a business building.

Nakamova, Manitoba doesnt have epileptologists, we lost our last one about 3 years ago to saskatchewan. and the Epilepsy Clinic I think is just a normal neurologist with all the Epilepsy tests in one building. Dr. Fast mentioned doing some more invasive tests, but not sure what that means.

All day today, if I stand up, i feel like hitting the floor. Auras galore and dont want to go home. that costs too much money.

 

[Nakamova]

I hope all goes well at your social tomorrow. If I could, I'd send you an epileptologist for a present.

 

[Rae1889]

Yay!

 

[Zoofemme]

Hey Rae...you can always do like I actually did for my second wedding...show up 45 minutes late. THAT tends to make EVERYONE else nervous....lol!

Seriously though...I'm sorry to here you are having it so rough THis is definitely not the time for the meds to be not working. Wish there was something more we could do to help out but hope a {{{{HUG}}}} offers some comfort.

 

[carlos.fonke]

Yes, I remember dreading going to sleep at night. It's an awful feeling.

Rae, wishing you good luck today!

 

[alivenwell]

Hi Rae! I wish the best to both you and Chad. It does sound like a lower volume alarm is needed for you. Does Chad have a loud one?

I've fallen asleep in front of this computer too many times, to be honest. I set a small alarm on my cell phone with customized alarms that aren't too shocking so I can take meds and go to bed.

 

[seizingbeauty]

Hey Rae,
Hope everything goes well today!
I have always hated my alarm clock too. My guy bought me one that plays cds, and has 2 alarms on it. We had a cd with different music, one song is smooth and calming and I have it set to go off first. If I get up for it then I can turn the alarm off before the 2nd one goes off and to be honest that is a pretty big insentive cuz round 2 could wake the dead (gotta love Korn first thing in the morning:rock. Plus he calls me every morning just to make sure.
I'm nowhere close to where your at with your seizures and have no idea how you handle it! I've had 2 t/c's in the last week and I can barely walk. My muscles are so tired that I'm shaking almost constently. For crying out loud took me nearly 10 min just to write this:roflmao:
Much Hugs
Cat

 

[stilldancing_98]

I have seizure like that to. And so I go for my annual walk for the day. Maby walk to the store and look at the new alarms. I hate the sounds. I automatically wake up before it goes off now. It will all come together in time. You are a strong, strong person.

 

[valeriedl]

I have an alarm clock that wakes me up in the morning to make sure I take my meds. My husband always calls me from work to make sure I had taken them. Plus I have two cats that know what time is feeding time in the am, right after I've taken my meds. They go crazy and bat at me and cry like crazy till I feed them. They are the best alarm in the world!

I also had a problem with one recipe of meds that I was on where all I did was sleep. I didn't eat and I don't think I even took daily showers or got out of bed, I just slept. My neuro changed my meds and I've been good since.

The stress from your wedding could be causing the sezs. I know after I have one I pass out and usually sleep pretty much after it and all day the next day.

 

[RobinN]

As for tomorrow.... relaxation techniques. It is a happy day, and even if there are mistakes, it will be wonderful memories.

Alarm clocks - many cell phones have a variety of sounds that you could try. I love that I can set mine with two alarms, 15 min apart. I need a few minutes of being neither asleep nor awake. You could also consider getting up with Chad, and using that time for a special project, or exercise. Then you could wake to your cuddle.

 

[katherineharlowe]

Gosh Help

I am so stressed for two weeks now and since then I cn't think, that's why I stumbled on this page, your post.... I did not even read it only the title cos I really feel tired can't think, can't work, can't do thingss.... helppppppppppppfkxlkifjhdzjk