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dori18
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Date Joined Aug 2004
Total Posts : 847
   Posted 2/5/2005 9:37 PM (GMT -7)   
I know this is the epilepsy forum, but there is not a forum for seizures that are not epileptic, so I thought maybe one of you would know something about the other types of seizures. My liscence was taken yesterday until medically cleared to drive following what the ER doc said was a absence seizure or a complex partial seizure? I was driving yesterday, then next thing I know I saw a truck driving towards me and couldn't figure out why I was on the wrong side of the road. I couldn't remember for a minute where I was going. I called my neuro whom I've been seeing for symptoms of dizziness/syncope and he is testing for Tachycardia, hypotension and adrenal/hormone probs which he said could cause this, he told me to go to ER as he was unavailable. Went and they asked a bunch of questions checked reflexes/muscle strength, ect. and told me I had one of those types of seizures and it could be related to what was goingon with my heart or could be the cause or something. Now I cannot drive and am thouroughly freaked out and so thankful I didn't runi nto someone or hurt anyone. But I don't know what any of this means-what are those seizures-symptoms/causes? I also have fibromyalgia/cfs-related to that maybe, and how long does this last, what do they do for it and does it go away? Didn't seem like a major deal-wasn't likeepileptic. or didn't last long, but I need any info if you have any. My name is Amy btw, post normally on the fibro forum. I'm 18, and this really freaked me out!
Thanks for your time,
Amy
When life hands you lemons...stick 'em in your bra! Can't hurt, might help!                   -Maxine


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 2/6/2005 5:39 AM (GMT -7)   
I am a bit confused. If the ER doc feels it was a complex partial or absence seizure, those are considered epileptic. Did they do an EEG on you? Blood work? these can help to show what is going on.

Epilepsy is not usually diagnosed unless there is more than one seizure. An epileptic seizure includes a wide variety of seizure types.

I hope you can get a referral to a neurologist and have this checked out. There are seizures caused by heart issues, usually a syncope.

Hoping you find answers, Please go get more testing to see if they can figure this out.

Phoebe
Regular Member


Date Joined May 2004
Total Posts : 21
   Posted 2/6/2005 8:49 AM (GMT -7)   
Hello, Kayakmom is right in that one seizures is just that, a seizure. I would thnk of one seizure as a symptom of something going on. Many people have pne seizure and never have another. It takes recurring seizures to give a diagnosis of eplepsy. The cardiac problems as well as the others you mentioned could be the cause. It is a good idea to have an EKG at the same time as an EEG to see if there is a connection. This is done commonly. I know one lady who has a pacemaker as well as epilepsy. Since they both function in large part via the nervous system, it makes sense that there could be a connection. A good Medical doc working closely with a neurologisat may shed some light on this. Also, you mentinoed that the ER doc told yu what kind of seizure you had. For one thing, he didn't witness it and since there are so many types of seizures, knowing which one was would be a guess. Since you came to on the other side of the road, you really do not know how long you were out. I hope your Medical doc works closely with the neuro in determining what caused this. One seizure is not epilepsy, but it is reason to check further. Phoebe

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 2/6/2005 11:54 AM (GMT -7)   
Phoebe said...
Hello, Kayakmom is right in that one seizures is just that, a seizure. I would thnk of one seizure as a symptom of something going on. Many people have pne seizure and never have another. It takes recurring seizures to give a diagnosis of eplepsy. The cardiac problems as well as the others you mentioned could be the cause. It is a good idea to have an EKG at the same time as an EEG to see if there is a connection. This is done commonly. I know one lady who has a pacemaker as well as epilepsy. Since they both function in large part via the nervous system, it makes sense that there could be a connection. A good Medical doc working closely with a neurologisat may shed some light on this. Also, you mentinoed that the ER doc told yu what kind of seizure you had. For one thing, he didn't witness it and since there are so many types of seizures, knowing which one was would be a guess. Since you came to on the other side of the road, you really do not know how long you were out. I hope your Medical doc works closely with the neuro in determining what caused this. One seizure is not epilepsy, but it is reason to check further. Phoebe
Ami,
I can't believe they didn't keep you in the hosp. to run more tests and how can they say it was a non-epileptic seizure without running more tests like an EEG or CATscan or MRI etc.
 
Re: Auras, HOW DO YOU KNOW THAT YOU'LL HAVE ENOUGH WARNING TO "PULL OVER". THERE'S ALWAYS A FIRST TIME-ARE YOU WILLING TO TAKE THAT GAMBLE?
 
I've had EP since 1979, only had ONE (1) grande-mal seizure since then, all my EEG's showed seizure activity in my lower left tempral lobe.
In in Dec.2002, I pulled in to a Wal-Mart parkinglot and just as I pulled in to a parking spot, Someone must have been looking out for me because I just came off the highway.  I must have passed out because all I can remember is the front bumper of my car (brand new) was "kissing" the bumper of the car in front of me, my car was still in drive with the motor still running. The lady in the car in front of me just happened to be a nurse and she opened my door to see that I was OK and then turned off the engine. She told me to stay put as she had called an ambulance after she noticed that for a moment I couldn't speak and she noticed my medic alert bracelet. I noticed that I was also foaming at the mouth.
 
Since the police were called and a report was filed, I had my licence suspended for an indefinate length of time.
Now I have to get my blood checked once a week so it can be closely monitored before I can get it back. I have to go seizure free for 2 years (controlled by medication).
 
It's like having my freedom taken away from me.
Do you know how humiliating that is especially when you've been driving your whole adult life?
 
That just goes to show you that it stays with you your whole life but can stay dormant in your system and cad hit you at any time when you leaste expect it.
  
I'm from Ontario, Canada, Our transpotation laws may differ from yours. In ALL cases of a seizure condition or black out behind the wheel,you must go seizure free for 2 years even if controlled by meds.
 
I drove without a problem until Dec/02 during an incident in a parking lot(I just came off the highway).
 
Now my blood levels are being checked each week but the Ministry of Transport has tightened up the rules in this area in an attempt to reduce traffic accidents so that is making it more difficult to get it back. But if I do get it back (which I don't think) I still won't drive and risk the lives of others. I think that is the more resposible way to handle it and set an example for others.
 
It's just like driving drunk-you're taking a major risk.
 
I'm starting to accept it a little easier.
 
 
Randy (Ontario)



Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day


Phoebe
Regular Member


Date Joined May 2004
Total Posts : 21
   Posted 2/6/2005 4:38 PM (GMT -7)   
Dori, I encourage you to read about the laws in your state. They do differ. You will find that people with heart conditions and other medical problems who do lose consciousness at the wheel are treated a little differently that those of us with a seizure disorder. That's another reason to have your Medical doc involved. In some states, the doc has to report the seizure, but in others they do not.

Ran Man, I noticed the meds you are on and the length of time you have had epilepsy. Since the stats re meds are what they are re meds ever working once one med fails to stop the seizures and since yours are originating from the Temporal lobe, have you been to an Epileptologist at a Comprehensive Epilepsy Center? You mnay be a good candidate for surgery. Mine originated from the Right temporal lobe, and I had surgery 6 years ago after having epilepsy for more than 35 yrs. Since there are other options that do work for many people, it would be a shame not to see if you can increase the quality of your life and decrease the meds etc by possibly stopping your seizures for good. Phoebe

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 2/6/2005 7:13 PM (GMT -7)   
Phoebe,
 
Thanx for your reply. I have a few comments to make about your reply:
 
1) I see a Neurologist rather than an Epileptologist simply because I also have another condition (ulcerative colitis) and he is familiar with this condition as well and works with my GI for the proper coctail of meds, he knows how the meds for each condition will interact with each other, he also believes that both conditions are related as they both come at the same time and are stress related. My case has been documented in the Canadian Medical Journal. An Epileptologist will only treat the seizure condition.
 
2) I've only had one grande-mal seizure in 25 yrs, my seizures and Colitis flare-ups are under control so why should I consider changing meds or even going off them completely, "IF IT'S NOT BROKE, DON'T FIX IT".
 
3) I haven't even cosidered surgery, no reason to.
 
4) I do have a lot of side effects from the meds.
 
5) At my age now, the only inconvenience that really bothers me is not being able to drive after driving my whole adult life.
 
Randy (Ontario)
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day


try2bhappy
Regular Member


Date Joined Nov 2004
Total Posts : 163
   Posted 2/7/2005 4:14 PM (GMT -7)   
Randy,
You should consider yourself very lucky that you have only had 2 seizures since 1979. I know going without driving can be a real pain in the butt. Then again for us out here who's seizures are not being controlled that well by medication now that is a pain in the butt. Since I started going to the EPI Clinic my seizures have slowed down to maybe 2-4 a week then they increase back up to every day. Then my meds. get increased. It for me at this time a waiting processes. Thank God I have the Diastat for when they get to bad so I don't end up in the ER. Where I am going they have people that come from all over the world to be treated for their Epilepsy. They might have 20 seizures a day and go home with only one a day. These people would rather have none but compared to what they were having they probablly feel great. I know if at this point they could make it so I only had 1-2 a week I would be so happy. Mary

dori18
Veteran Member


Date Joined Aug 2004
Total Posts : 847
   Posted 2/8/2005 2:50 PM (GMT -7)   
Hello everyone. Thank you for your replies. Um to answer some questions, I have had a cat scan, but have not had an EEG, MRI, or PET scan (btw, what IS a PET scan?) The blood work they are doing now is to test my thyroid, cortisol/adrenal glands, and in the past they have tested my blood for lupus and diabetes. Waiting for the results on a holter, but they said it would prob. not show anything as nothig happened in the 24 hours it was on. Echocardiogram was yesterday. My neurologist will discuss the results of everything with me after I have and EEG, which he ordered yesterday. THe reason the ER physician said it wasn't epileptic was becaus ethis is the first time this has happened to anyone's knowlege. HTe only reason it was caught was because I ended up on the wrong side of the road. But he thinks it is a symptom of what's going on as phoebe and kayakmom have suggested. The only meds I'm taking are norco for a hernaited disc in my lumbar spine and compressed discs in my thoracic, and xanax which I haven't started taking yet as it was prescribed yesterday following my telling the neurolgist that all this was starting to make me anxious. He now thiks maybe I have paic disorder although the anxiety doesn't set in until after all this happens and I don't know what to do for it. I thought anyone would be a liitle panicy after almost having a huge truck drive over their little car because they are on hte wrong side of the sroad and do not know how they got there. Other than that I have not taken any meds for months as my neuro discontinued them all (meds for fms, and antibiotics Iwas taking for an upper respiratory infection that wouldn't leave). He discontinued to see if maybe they were causing dizziness/syncope that I was experiencing, and never restarted any as he thought they maight have interferred w/ any testing. Regardless of wether he thinks it's just anxiety, at least the xanax should help my irregular sleep and should help with fms if nothing else. At this point I don;t care what he calls it, as long as he finds something to stop it.
Thanks for your info and replies, will post more when I know, if I know, thanks,
Amy
When life hands you lemons...stick 'em in your bra! Can't hurt, might help!                   -Maxine


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 2/8/2005 3:00 PM (GMT -7)   
http://www.radiologyinfo.org/content/petomography.htm this tells some about the PET scan. I believe it shows the function of the part scanned, where as the CT and MRI show the structure.


I hope the neuro can figure this all out. Sad that he thinks it is all anxiety, but I hope he really listens and looks closely at the tests. Did you ever get over that infection with no antibiotics?

Hang in there Maxine...

dori18
Veteran Member


Date Joined Aug 2004
Total Posts : 847
   Posted 2/8/2005 4:34 PM (GMT -7)   
thanks kayakmom, the site was informative. I did get over the infection, but I get infections alot, and thus have a fever (lowgrade) alot, esp following viral meningitis. So sometimes even with antibiotics, it drags along. Vit. C and tylenol do more sometimes. Thanks for asking, and thanks for your help.
-Amy (maxine is the person who's saying I used in my signature :)
When life hands you lemons...stick 'em in your bra! Can't hurt, might help!                   -Maxine


Phoebe
Regular Member


Date Joined May 2004
Total Posts : 21
   Posted 2/8/2005 11:27 PM (GMT -7)   
A PET scan (Positron Emission Tomography) is one of the tests done in determining candidacy for surgery. It is not a test done routinely for seizures unless the doc thinks there may be a metabolic cause or one associated with glucose metabolism. I can't believe you haven't had an EEG!! Please ask your neuro to do an EKG at the same time of the EEG. You may have to insist. Your Medical doc should want this too. That will allow them to see in real time of there is a connection but only if seizure activity occurs. Many times the EEG will be normal, but that is not at all unusual for that to happen even if the diagnosis is epilepsy. You mentioned that your doc suggested Panic disorder. That is a very commonly guessed at or assumed diagnosis when the doc does not know what the diagnosis is. I hope the Medical doc being really closely involved along with your cardiologist and neuro, they will come up with the proper cause of your seizures. Many times, a cause is not found although the epilepsy is very real. There are antibiotics that do affect your AEDs and your seizures so if they were still in your system or had caused your level to drop, that could be a big factor. that deopends on when yu stopped them in relation to when you had the near accident. I do wish you well. Please keep us posted. Phoebe

dori18
Veteran Member


Date Joined Aug 2004
Total Posts : 847
   Posted 2/9/2005 6:32 PM (GMT -7)   
hello. My eeg has been scheduled for the 16th of february. had an mri today in er as I lost consciousness for a few, and the mri was normal except for my pituitary glad which they said was pretty enlarged. They ordered a thyroid panel even though that has been done and we are waitng for the results, but he said it would give my doc two to look at. he said an enlarged pituitary usually means the thyroidis underproducing. The ER doc said he still thinks also that the positive tilt table showed the most, but said he understands why my doc will not give a dx based on that until he has checked other venues. Anyways will have the results from everything including the EEG on the 28th for my follow up. I'm copy and pasting as my arms hurt, blew three veins today, then add two more holes for blood and an iv in my wrist. I'm tired and sore, butI will respond to other posts a little later. Thanks guys for all your support. And JK I hope you get some answers soon! Please let us know!
Hugs, Amy
When life hands you lemons...stick 'em in your bra! Can't hurt, might help!                   -Maxine


RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 2/10/2005 11:42 AM (GMT -7)   
Amy,
 
I think you should consider giving up driving totally at least untill this is resolved. It's not woth the risk.
Did you hear about that woman in Florida who recently passed out behind the wheel of her SUV and crashed though a school bus pick-up area and hit a bunch of kids? I'm not sure of the number of casualties.
 
The woman was driving while her licence was under suspention for medical reasons.
 
I'm glad to see that you finaly had an EEG as well as cat-scan and blood work. This should reveal something.
 
Hope you get this mess straightened out.
 
Randy

Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day

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