Do Over :)

[jfittler]

Hi there everyone I thought now I have finally kind of got some answers, although nothing concrete I would do a proper intro since I am a not freaking out all the time and raving on like a total loony. :roflmao:

My names Julie I am 30 and live in Australia, I am married to a man with epilepsy diagnosised as a baby it runs in his family, he had 3 or
4 different types of seizures until he was 20 all to varying degrees. He is 31 now and not on any meds and says he hasn’t had a fit since, I don’t believe that but anyway he is okay. I am also the mother of 3 two with diagnosed epilepsy and one who is starting to throw up questions in me weather he does has some form also. Now me getting this is that some sort of cosmic joke or what its unbelivable lol.

My problems started about 5 months ago with a episode in the night which awoke me with a racing heart and couldn’t breath I thought it was a panic attack but then came this weird sensation in my stomach and the hot flushes, over and over in waves for about an hour. I had no idea what this was, and aftyer it had happened a few times, and consulting doctor google (such a bad idea) I realized I was having simple partial seizures.
Since then they have been becoming more frequent and a lot worse to the point I am pretty sure the other night I had a complex partial seizure, where I blacked out and my body stiffened up no one witnessed this but I had a time lapse when I was in a simple partial and when I opened my eyes I am sure my arm was all twisted but released as soon as I opened my eyes. Since last week I have been having them every single night and pretty much getting no sleep as the get 100x worse when I am in between awake and falling asleep or the really bad ones will happen 5 to 10 minutes after I fall asleep. If I wake up before it gets to bad I can usually stop it getting worse by opening my eyes sitting up or getting out of bed and doing something, half the time. If I keep my eyes closed and try and sleep or just lay there they get a lot worse and I have even started o feel as though my whole body was paralyzed.
I do have little ones when I am awake like tingling in the leg, some confusion, muscles cramps, weird eye stuff, cant concentrate, electric buzzing in my head. But nothing to bad…YET anyway. I have been to see a neuro, got a sleep deprived eeg and it HAS showed something.
I had slow waves over both hemispheres, in the frontal lobes but more prominent in the left side. It got worse when hyperventilating and also when falling into a light sleep. Over all a mildly abnormal eeg. Then I find out my neuro isn’t back in the country until next week so here I am with that, they did tell me he would probably want me to have a 5 day ambulatory eeg so I called for that but cant get in until November, I DON’T think I can wait that long. What if they just keep happening every night I get no sleep, do I get brain damage every time I have one, is my brain learning to have more and more seizures cause Im just sitting around waiting?

Im also breastfeeding my baby so I have had to start weaning her as I am pretty sure I will have to go on meds so that’s a lot of fun, NOT lol.
Anyway I am sorry for my crazy posts I have been putting up in a freaking out frenzy lol I haven’t been handling this very well and have just been going insane I think lol.
I do have one question, do you think that because I have been stressing about these and thinking about them constantly that could be why they have become worse and more frequent? Because last night I had a bad one when it was finally over I played scrabble for a while and then tried to go back to sleep I felt one starting again so I tried to just concentrate really hard one something SMURFS was the first thing that popped into my mind (random I know lol) and it dissipated and then I got to sleep and sleep for about 4 hours till the kids got up????

Anyway I have heaps more to say but I guess I have written quite enough for now especially since I think they are made worse but staring at this ting to much lol. Thanks for reading this if you mad eit to here, and everyone’s warm welcomes and advice

xxJulie

 

[Endless]

Hi, Julie,

Nocturnal (nighttime) seizures are common. Seizures often happen when the brain is transitioning between states of sleep (between types of brain waves). Knowing that doesn't make them any easier to take. They really disturb me, too.

Resources are scarce for an Ambulatory EEG. Book it when you can. November (two months) is about par for the course. There may be other options that are available earlier, like an in-home ambulatory EEG, but that won't give the doctor as much info to help you.

Worry or panic about seizures can make it worse. For some people stress is a seizure trigger.

I had no idea what this was, and aftyer it had happened a few times, and consulting doctor google (such a bad idea) I realized I was having simple partial seizures.

Dr. Google is a great idea. Get as educated as you can about your disorder. Information takes the scary out of things. There are some sources that are much more reliable than others. Good ones include www.epilepsy.com,
www.epilepsyfoundation.org
www.mayoclinic.org
www.pubmed.gov
www.cleavelandclinic.org
www.ninds.nih.gov/disorders/epilepsy/epilepsy.htm
http://www.cdc.gov/epilepsy/toolkit/resource_guide.htm
www.medline.com
www.drugs.com
The "look inside" function on Amazon.com is great, too. You can go straight to the medical textbooks to look up whatever you want to learn more about. Really good when your epi doesn't explain much (like mine doesn't).

Wikipedia if you absolutely must, but no guarantees that anything you read in there is right. What is valuable are the links to articles and resources at the bottom.

I get brain damage every time I have one, is my brain learning to have more and more seizures cause Im just sitting around waiting?

My epi (seizure specialist) explained that it would have to be a lot of seizures over a longer period of time to make a huge difference, but the difference does happen a little at a time. Or, it takes a HUGE seizure or going into status epilepticus. It's the little changes over time thats one reason neuros want all the seizures gone on meds. Not one breakthrough seizure, or it could lead to more. Two years seizure free and you could be off the meds.

Im also breastfeeding my baby so I have had to start weaning her as I am pretty sure I will have to go on meds so that’s a lot of fun, NOT lol.

Some say there are some AEDs that are safe when breastfeeding. Some moms in here have taken them while pregnant, and breastfeeding. (Not sure I would) Others say it isn't safe.

http://www.medscape.com/viewarticle/530483_7

http://www.jeffersonhospital.org/de...ens-epilepsy-program/breast-feeding-aeds.aspx

http://www.healthinsite.gov.au/cont...479A8874-F84F-AC5C-584950CDCC40593C&PID=63853

http://www.epilepsy.com/epilepsy/newsletter/jan11_feeding

I do have little ones when I am awake like tingling in the leg, some confusion, muscles cramps, weird eye stuff, cant concentrate, electric buzzing in my head.

The epi's I've seen swear the electrical feeling isn't a seizure. I disagree. Or maybe it's migraine. I don't know.

It's entirely possible for a person with epilepsy to also have migraines and sleep disorders, too. They are all comorbid (they happen in the same person). A good idea might be to also have a sleep study, since most of your seizures happen at night. Sleep disorders can look exactly like a seizure. Migraines can, too, and don't have to have a headache. There are "silent migraines." A good neurologist will suggest all this detective work and tests to you. most of us want this to be almost anything but epilepsy. Hearing that it is would be very good news - other things are easier to treat and easier to live with.

Hang in there. It takes awhile to get everything straightened out, the diagnosis, the meds, etc. I know it's hard, but have strenth dear heart.

<<<<hugs>>>>

 

[jfittler]

Thanks Endless as always I am impressed by the effort you put into your reply :clap:. Yeah I think I am hoping it is anything other than, but then I feel guilty because I have alsways told my children that its not to fear and they are "normal" people just on medication, although my 6 year old went off her meds at age 4 and hasnt had a seizure since, well not a noticble one anyway as I have found out there are many that could go unnoticed but for now she is good, its just the 1 yaer old that is currently on phenobarb which she is doing quite well on actually although she is also on a b12 suppliment as she was extremly low in that not sure if that helps her but she is hitting all her milestones early and is very alert and with it. Although I would much rather get a dx of epilespy than a deadly brain tumour or some other horrid disease so I guess I can hold onto that thought and be thankful that if it is epilepsy than I have a pretty good chance of living a happy life long life with my husband and kids I agree a sleep study would be a good idea, and also the ambulatory eeg is one that I can go home with, but I have to go to the hospital everday for an hour I supposed to get it recharged or something lol is that what home eegs are? They are not keeping me in to video me or anything althoug I am thinking about just turning on my webcam and recording myself to see whats happens when I fall asleeponder: Thanks for all the links I will have a look at them after the baby goes to bed.

xJulie