This message is mainly to vent. YOu guys are so good at listening to me do that and thanks in advance. I have mainly simple partial seizures and some complex partials. Had them for almost 3 years. The test I am currently on is a home EEG machine and it is very uncomfortable. Every test I have had has come up normal and i am really tired of taking them. I am going to buy a strobe light tonight since I am light sensative and watch it in a dark room for a while so that maybe it will record something this time. Luckily right now I am on disability so i dont have to go to work with this thing attached.
I do have one question. Has anyone ever had E and not had a single test show abnormalities? They have diagnosed me with E but they dont know where the damage is or a more specific diagnosis like TLE or something.
Anyway, I think I am done now so if you would like to reply it would really help my morale or if you want to join in on the venting then feel free.
I know the frustration you are feeling and wish there was something I could say or do to help you with your frustration. I can say that I had many normal EEGs though and only recently have my EEGs been showing seizure activity.
Are you on disability because of the seizures? Is it private disability? That is the part that is frustrating me the most. I have been turned down by SS twice because they say my seizures don't occur often enough (Thankfuly I have had only 2 Grand Mals in the last 7 months, but I have had numerous Peti Mals, blackouts, or what ever you want to call them.) and they should be controlled by meds (I just had a Grand Mal yesterday and I am on 3000mg of Keppra and 400mg of Dilantin a day). I am also permanently partially disabled (if that makes sense) because of my foot and I can only be on my feet for 2 hours per day. But SS says it is either all or nothing.
Sorry for turning your rant into my rant. I know the frustrated feeling and I can sympathize with you. Not to sound negative, but let's hope they find something on the EEG this time so you can get the help you need.
Thanks for the reply mnsnellers. And dont worry about ranting on this thread. Hearing you rant is just as helpful to me.
I am on disability from my job right now. This is probably the best company I have ever worked for as they have been really understanding of my problem. I have had them at work many times and they will let me go take a nap(on company time) or just go home depending on how bad it is.
I am taking depakote right now and I think it is helping. I have been on it for right at a month now and last night to try to help the EEG gather some data I bought a strobe light cuz I am light sensative. I turned it on and it had no effect at all besides getting on my nerves!!! Normally that would have put me right into a seizure. I did have a seizure last week but it was very very light.
I feel so much better today. The light didnt make me have a seizure and I took the EEG machine off of my head today. I also may be able to go back to work soon. I miss work.
Thats it for today and good luck with your problems mnsnellers. I hate hearing about others with this problem but it really helps to talk to you guys since I have no one else that understands.
As long as everybody is "venting" so will I
I am trying to buy a condo and will be living
by myself I have not a seizure for quite a while
But like my first one they don't know why it
started or if it will ever happen again. I still am
employed as a P.O./ E.M.T.
There I vented
Peace to all
Pacemaker, It doesn't sound like you have epilepsy. Many people have a single seizure in their lives but do not have epilepsy. That sounds like that is your situation. Would you like to learn about it? We read many posts from patients who say that EMTs and ER personnel do not have the expertise to treat us properly. I have to agree since I have seen it first hand from both sides of that fence. Do you have questions we can answer for you? Tattoo
[This message has been edited by Tattoo (edited 08-21-2002).]
Trust Tatto Pacemaker. EMT's don't know squat about people with seizure disorders. Especially military EMT's. My last Grand Mal seizure one of our EMT's restrained me to the ground and proceeded to stick his thumb in my mouth. Pretty stupid isn't it?
Well needless to say I bit this individual and laughed my butt off the whole way to the hospital. Then I started wondering where his thumb could have been. That made me rather sick.
If you've only had one seizure don't take lightly too it but don't let it be your biggest worry in life. Get rid of the EEG machine and enjoy your time here. Life isn't about medicines and machines.
I have 2 Grand-Mal Seizures and a couple of
Pettie seizures The 1st seizure broke both of my
arms at my shoulder joint.
Now that was not a very smart E.M.T. When I
Instruct that is the biggest thing I harp on is not
to stick anything in somebody mouth, when they are
haveing a seizure !!!!!!!!!
Peace to all
I've had full convulsive seizures, blackouts, waking dreams (the most common of my symptoms and confusing and freaky ebyond belief). I've never had any abnormalities show up on an EEG and my MRI didn't show anything epilepsy related (although the doc kindly told me my brain looked like it has MS... but I don't have any symptoms of MS)
Epilepsy medication helps. Its been almost a year since I last had a waking dream, and over a year since my last convulsive fit, though I still 'zone out' from time to time. Although that hasn't happened since I was put on antidepressants (not so odd as it sounds, I know my epilepsy is trigggered by stress)
Well, at least I'm not the only one tearing myself limb from limb I too, got the seizure dx courtesy of breaking ball, socket, rotator cup (get the picture?) of the right shoulder. Don't have a clue how it happened, but the doc said there were some enzymes in the blood that indicated a seizure had occurred.
Mine are on THE strangest schedule and at first i could almost predict the things. They arrived on the 27th or 28th of April and September until the one that broke my shoulder 4/28/98. They started in '97 and with that schedule I pretty much ignored them since they happened in my sleep. But now I've had one 6/30 and 7/31. Needless to say I'm getting a bit stressed as we come upon 8/31. I'm already on 500mg Dilantin q hs and the good folks at the HMO have promissed me an appointment next week. Also I think I may now be having the ones called 'absence' seizures. I was out on Saturday and had my camera in my hand one minute and didn't have it the next. There is a blank block of time in there that I can't fill in. Don't know where it went as packages, purse, money all there. Sometimes things just drop out of my hands but more often I set things down and forget them. Like you, all the sleep deprived EEGs and the MRI were negative. Don't know what is going on but SOMETHING is. Well that's MY vent Hope everybody gets better or at least get some answers.
Emeraldbee, If you are losing time, I would not be thinking Absence seizures. You may be aware of this, but Absence is the newer term for what was called Petit Mal seizures. I would be thinking Complex Partial. You seem to have them at specific times of the month. Are they happening near the start of your period by some chance? Check into Catamenial Epilepsy. That basically means that your seizures are affected by the changes in hormone levels at that time. Both Estrogen and Progesterone do have an effect. Opposite effects, but an effect just the same. Some women start taking Diamox at that time. If these are occurring near your period, your Epi doc does need to know. Do inform your doc exactly what happens during those times where you lose time and do see if you can notice a pattern to your seizures as to when they occur in relation to any other activity such as your period. Tattoo
I have complex partials... and no EEG has ever shown any abnormality. Normal MRI... CAT... everything. I am still having them at times though... seems that sleep deprivation thing was no joke. Everytime I miss sleep I feel like I am going to have a seizure. I am talking just one night of missed sleep. E is very depressing at times with me anyway... bedtime... no sugar... no carbonated drinks... meds all the time... NO DRIVING..GRRRRRRR Okay now I vented and yep yep I feel a little better.
I thought I was the only one that this ever
happen to broken joints that is. My Neuro Doc
has never herd of a case like mine. Hope all is
well with you ! How do you put the heart and waveing
smile on your post