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diplomatecs
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Date Joined Jun 2008
Total Posts : 21
   Posted 6/27/2008 11:56 AM (GMT -7)   
Well I am new here but my history isnt new to seizures,  I am 58 years old, had a noctural grand mal seizure at age 21, wnad with all the tests known at that time ended up with a suspected brain tumor and had surgery.   It was not a tumer just dead gray matter on the right side of my brain.   Well I recovered and have been on phenobarbitol and dilantin for over 35 years and up until about 6 weeks ago seizure free.   I was driving and had a head on accident.  I made it ok but now thru many tests my eeg shows some spikes I really dont know what that means and I want to understand more.  My meds have been adjusted and right now my life has come to a stop.  I cant drive of course and I am scared.   I dont think I have epilepsy at least I was told I didnt before can anyone provide support.. Lyn

djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 6/28/2008 2:09 AM (GMT -7)   

HI Lyn and Welcome to HealingWell!

I am so glad that you have found us. Being scared and feeling that you are on your own is terrible and that is why we are here... hopefully we can get rid of both!

EEG spikes are abnormal brain activity. Spikes are usually a diagnostic used for epilepsy and given your symptom history and medical history, I would say that epilepsy is a reasonable bet. The fact that you had 35 years without a seizure probably means that the meds just need adjusting since your body will be a lot different to how it was 35 years ago. You will be allowed to drive again, you just have to complete a certain length of time without a seizure. (In the UK, its 1 year but I know the length varies across the US and is usually shorter than a year).

If you have any questions at all, please ask. There is no such thing as a stupid question if you dont know the answer.

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
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Co-Moderator - Depression Forum
 
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Another Day
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Date Joined Mar 2007
Total Posts : 1055
   Posted 6/28/2008 3:39 PM (GMT -7)   
Lyn, I wanted to also welcome you to HealingWell.  I'm sure that came as quite a shock to you after not having a seizure for so many years.  First thing, you are alive and you can start all over.
 
In the U.S. is varies on how long you have to wait before you can drive.  I do not know if you live in the U.S. or not.  I live in KY and you have to be 90 days seizure free (which I hope to be there next week) and the next state over, TN where my neurologist is, you have to be six months seizure free in order to drive.
 
I was diagnosed in 2006 and it took me 15 months to get 90 days the first time around.  It can take some time to get you on the right medication.  I am telling you this in case they do have to make some changes in your medications and the first one doesn't work, please do not get discouraged.
 
Darren can tell you I was totally confused and discouraged when I found this site.
 
Good luck to you,
 
Carla

Moderator, Allergies/Asthma
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 
 
Epilepsy, asthma, fibromyalgia, GERD, depression, hypothyroidism, tinnitus


diplomatecs
Regular Member


Date Joined Jun 2008
Total Posts : 21
   Posted 6/29/2008 6:58 PM (GMT -7)   

I want to than you both for writing.  Yes I live in the U S  Florida.  THe law here is 6 months to be seizure free. 

When I had the accident I just couldnt remember what happened and couldnt imagine that I had a seizure.  I still cant believe it actually. I guess if I get to drive again I will always be scared to death.  When you total a Chevy Avalanche its pretty serious.

My husband died just 5 years ago from complications of a liver transpant that he had due to hepa*** c.  THis was just 2 days before our 34 wedding anniver. too.  I  still work full time and as you can imagine its been very hard since the accident not driving.  I know i cant drive but I just dont know how I will manage without drving.   I am remarried and my new husband has been wonderful thru all of this driving me around but I worry that it will go on and on.  I just am not ready to give it all up and live dependent on everyone. 

Do you know what happens when the 6 months is up and lets say I dont have a seizure?  ANother stay awake all night eeg blood work or what.   I guess not having these spikes before just confused me.  I am now on an increased dilantin and they want to wean me off pheno.   I guess I have no choice.    I want to just give up but I know I have to keep trying. 

I am so glad to have found people that knwo how it feels to be this way.  Iknow I will have lots of questions.  Lynette


djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 6/30/2008 2:39 AM (GMT -7)   

HI there,

The important thing to remember is that when it comes to your healthcare and treatment, you ALWAYS have a choice. Although the doctor can best advise you, if you are not comfortable doing something then explain that to him/her. 6 months is not a long time at all... you will be back on the road again by xmas. I couldnt imagine not being able to drive. I always thought about how I would get to work, how I would get home from uni etc... I have been off the road 2 and a half years now and its been much easier than I thought it would be.

If you have any questions, please ask

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


diplomatecs
Regular Member


Date Joined Jun 2008
Total Posts : 21
   Posted 6/30/2008 4:28 AM (GMT -7)   
Thanks again, well I dont know how you manage not driving I guess if you live close to things its not as bad. I live out in the country and not close to anything, I love this lifestyle and have been here 25 years. We built this house and I cant imagine leaving it, with the housing market the way it is thats not to possible either I just dont know. I know 6 months isnt forever but I worry that at the 6 month mark I still wont be able to drive. Do you know if you still have those spikes in your eeg does that mean you cant drive? I know your not the Dr. but over the years I have found that people that live with stuff like this often know more than the Drs. I wont be seeing the neuro for 5 weeks and I guess I am full of guestions till then. I know my case would seem minor compared to others but to me its not. Well today I have to figure out how to get to the dentist then to work, I just dont know what I am going to do. Sorry Im not usally a complainer but this time I guess I am. Thanks again

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 6/30/2008 3:15 PM (GMT -7)   

Hiya,

I dont live especially close to things. I walk about 2.5 miles to work (One Way). My university is about 300 miles away from my parents home so I have to get coaches during the holidays. The spikes on your EEG are not stopping you from driving. Oncve you have completed 6 months sz free, you are able to drive (regardless of whether you have spikes or not)

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


diplomatecs
Regular Member


Date Joined Jun 2008
Total Posts : 21
   Posted 6/30/2008 3:51 PM (GMT -7)   
Darren
 
Thank you for your help.   I went to see my Dr. today.  He now wants a MRI of my Brain.  I thought I had had just about everything done.  Guess not.  He did explain to me a bit more about the spikes and I think I understand it better at least.   I guess all I have left to do now is hope nothing happens to prevent me driving, I will be sure to take the meds as prescribed.   I am depressed with all that has happend but I guess I have to manage.
 
I wish you the best and thanks for the time you have taken with me.  Lyn

Another Day
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Date Joined Mar 2007
Total Posts : 1055
   Posted 6/30/2008 5:43 PM (GMT -7)   
Lyn,
 
I live in KY and nothing even went in to the State Driver's License Division about my seizures.  I'm not sure about your situation since you had an auto accident.
 
I think for most people when you first get that diagnosis of epilepsy, it causes some depression.  It did for me.
 
I am 57 and was diagnosed almost two years ago.  I would have been lost without Darren, Randy and others on this site.  Strange things would happen to me and I would come here and talk it over and find out I wasn't crazy, that it had happened to others also, before I told my daughters or my neurologist.  I think I was afraid my daughters would think I had lost my mind.
 
Like Darren said, no question is a stupid question.  We are all here to support you, please know that.
 
Hugs!
 
Carla

Moderator, Allergies/Asthma
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 
 
Epilepsy, asthma, fibromyalgia, GERD, depression, hypothyroidism, tinnitus


diplomatecs
Regular Member


Date Joined Jun 2008
Total Posts : 21
   Posted 6/30/2008 5:57 PM (GMT -7)   
Carla,

No the state of Fla is not involved with my driving situation. When I had the accident I was alert immediatly and nothing was known of the possible seizure. It was me that knew something must have happened and I went to the Dr on my own. I just knew something was wrong I couldnt remember what had happened. Drs the the State of Fl. are not required to report seizures either. So I just wont drive because they told me not to. Yes I am depressed, I hate that after all I have been thru I now have to try to deal with this as well. I need to work for the pay and now more than ever health insurance. Its hard not to be able to get yourself where you need to go at 58 years old and I hate to ask someone for the little things. Getting to work and home has been hard enough. I need to have people that understand what it really feels like to be afraid that it will happen again. Thank you and Darren for taking time to care. It means alot right now. I will be here to ask alot of questions and alot of them will probably be stupid too. Lyn

Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 7/2/2008 1:31 PM (GMT -7)   
Lyn,
 
Darren has said many times that there are no stupid questions.  I was certainly glad to hear that when I first came on board because I felt like a fish out of water.
 
Darren knows so much about epilepsy and I am here anytime for moral support.  Please feel free to email me anytime, my email address is under my name. 
 
Hugs!
 
Carla

Moderator, Allergies/Asthma
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 
 
Epilepsy, asthma, fibromyalgia, GERD, depression, hypothyroidism, tinnitus


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 7/2/2008 2:09 PM (GMT -7)   
Please feel free to ask any questions you want to. The best way IMO to beat something is to know as much about it as you possibly can. I hope I can help you to do that, just as I have helped others

Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


diplomatecs
Regular Member


Date Joined Jun 2008
Total Posts : 21
   Posted 7/5/2008 11:29 AM (GMT -7)   
Darren

Do you know symptons of to much Dilantin? I know Im probably just over careful but I was curious?

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 7/7/2008 12:21 AM (GMT -7)   

Hi there,

Dilantin (What I call Phenytoin in the UK!) has quite a few side effects as it is quite an old med but there is a new formulation which has just started circulation in the last few months so some of these may now be in correct. I have found a list of SE's for you:

More common

Bleeding, tender, or enlarged gums (rare with ethotoin); burning, tingling, pain, or itching, especially in the groin—following fosphenytoin injection; clumsiness or unsteadiness; confusion; continuous, uncontrolled back-and-forth and/or rolling eye movements—may be sign of overdose; swollen glands in neck or underarms; fever; muscle pain; skin rash or itching; slurred speech or stuttering—may be sign of overdose; sore throat; trembling—may be sign of overdose; unusual excitement, nervousness, or irritability

Rare

Bone malformations; burning pain at place of injection; chest discomfort; chills and fever; dark urine; dizziness; frequent breaking of bones; headache; joint pain; learning difficulties—in children taking high doses for a long time; light gray-colored stools; loss of appetite; nausea or vomiting; pain of penis on erection; restlessness or agitation; slowed growth; stomach pain (severe); troubled or quick, shallow breathing; uncontrolled jerking or twisting movements of hands, arms, or legs; uncontrolled movements of lips, tongue, or cheeks; unusual bleeding (such as nosebleeds) or bruising; unusual tiredness or weakness; weight loss (unusual); yellow eyes or skin

Rare (with long-term use of phenytoin)

Numbness, tingling, or pain in hands or feet

Symptoms of overdose

Blurred or double vision; clumsiness or unsteadiness (severe); confusion (severe); dizziness or drowsiness (severe); seizures; staggering walk; stuttering or slurred speech

Hope this helps
 
Darren
Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


diplomatecs
Regular Member


Date Joined Jun 2008
Total Posts : 21
   Posted 7/7/2008 2:15 PM (GMT -7)   
Thanks Darren, I did some research as well being on this med for such a long time and it seems like the side effects are about the same. I just wondered since this Dr increased my dosage if I should expect to feel anything. I guess I need to call him and ask. Thanks for the info

diplomatecs
Regular Member


Date Joined Jun 2008
Total Posts : 21
   Posted 7/12/2008 7:37 AM (GMT -7)   
 
 
Darren
 I have a question for youi.   I think I told you the Dr has increased the amount of Dilantin I am taking to400mg every other day.  He is also decreasing the phenobarb. that I take slowy,   Well I have been dizzy and lightheaded, called the Dr. yesterday. he said hang in there its not uncommon your body will get used to the increased Dilantin.   I wondered if you had heard this also.   I guess my body has alot to get used to I reallly dont know.  It does seem odd to me that everyone takes the same dosage no matter what size they are,  I am a small person so maybe thats it   who knows...     Lyn

djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 7/14/2008 2:59 AM (GMT -7)   
Hi Lyn,
 
The size of your body shouldnt make too much of a difference although if you are very small and slim (Lets say as a rough measure, 5'1" or under) you might feel something. My gut tells me that it is just your body getting used to the increase in Dilantin but also the decrease in PhenoBarbital. You can get withdrawl syndrome when you are replacing meds (Like your doc is doing). If it persists for more than a month (or you get worse symptoms) dont be afraid to go back to your doc and tell him your worried. It might not be withdrawl syndrome and it might need treating.
 
Darren
Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


diplomatecs
Regular Member


Date Joined Jun 2008
Total Posts : 21
   Posted 7/14/2008 10:20 AM (GMT -7)   
 
 
Darren
 
Thanks for the info.  I guess my poor body is confused is all.  Well my B12 levels are to low, probably caused  from the long use of Dilantin and that can cause dizziness too.  I am now on B12 injections as well.  Since I wrote I have fallen 2 times, didnt hurt myself but I just couldnt catch my balance is all.   I uess being a smaller person helps in that respect.  I am scheduled for bloodwork that will show levels in the first week of Aug. till them I will just have to be careful. I am just feeling a bit overwhelmed right now I guess.   Thanks for listening.  Lyn

djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 7/14/2008 10:36 AM (GMT -7)   

Your very welcome. Always remember, that there is no such thing as a stupid question if you dont know the answer. I hope the bloodwork goes well and that you start to feel better soon.

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


diplomatecs
Regular Member


Date Joined Jun 2008
Total Posts : 21
   Posted 7/14/2008 11:09 AM (GMT -7)   
Darren,

Just knowing a few people really understand some of what I am dealing with helps alot. If you dont tell anyone then you really feel alone. I have managed thru some pretty rough stuff in my lifetime and I guess this could be considered a bump compaired to most of it. They thought I had a brain tumor at age 21 and I didnt if I try to keep that in mind Im sure this will pass too. In the meantime its great to be able to communicatye my concerns . I have a feeling when I have the bloodwork don the level could be to high who knows. Thanks again

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 7/15/2008 3:03 AM (GMT -7)   
This is what we are here for. So many times people feel they cant express how they feel or talk about their disease/disorder to 'real' people but can manage to talk online to 'cyber' people. If I only help one person a day... im doing my job right. I remember how bad I felt when it first satarted happening to me and I dont want others to feel that way.
Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


diplomatecs
Regular Member


Date Joined Jun 2008
Total Posts : 21
   Posted 7/16/2008 3:14 PM (GMT -7)   

 

 

Thanks Darren it helps.  I went to the Dr. today now they want to doi a MRI with contrast and since the labs are conflicting and there is something going on with my thyroid I now get to see yet another Dr.  I do believe the last MRI was ok but when the Drs get talking sometimes iits hard to imagine its you they are talking about. I wondered if you had ever heard of a thyroid issue causing problems with seizures I guess the Dr. is jus finding all kind of stuff it seems.  Im pretty worn out by now I guess.  I do have a good Dr. and he is very thorough but I guess I still have alot of questions.   Thanks for your time.   Lyn


Beyond my Control
New Member


Date Joined Jun 2008
Total Posts : 16
   Posted 7/17/2008 2:49 AM (GMT -7)   
Hi Lyn,

I have read your chat to date, and I agree with so many comment's that have been posted. The one thing that sticks in my mind is - I quote: 'There is no such thing as a stupid question, if you don't know the answer.' I had a 'so called' stupid guestion when I first began taking Keppra. I asked, "My hands are constantly cold, could this be related to the medication?" The reply was, "No, there are no reports stating that as a side-affect." I said, " Well, now you have one!"

Keep asking questions, we learn from them and they indeed learn from us.

Take good care, and stay well. Stuart (author) Beyond my Control

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 7/21/2008 3:33 AM (GMT -7)   
Stuart is absolutely right... just because someone has never heard of something before, it doesnt mean it doesnt exist. Think of all the scientific firsts: Gravity, Space, The Sun etc... If you took them all away since they 'dont exist' we'd be in a REAL pickle! lol.
Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


diplomatecs
Regular Member


Date Joined Jun 2008
Total Posts : 21
   Posted 7/21/2008 11:13 AM (GMT -7)   

 

 

Darren,

Another question,  what is the normal level of dilantin in the blood?   Seems like I am at a toxix level and thank goodness I have a great Dr who  called for bloodwork on Friday and called today to tell me to stop taking Dilantin right now and repeat the level.  I had to go to the hospital lab to have that done as the  results come back in one hour.   THe levels are down but still at 39.1.

So do you happen to know what they should be?   Thanks for listening   Lyn

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