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Posted 10/6/2007 5:13 PM (GMT 0)

Hi Everybody,

Ever experience this? Have had seizures regularly since I was 35. After the initial work up, EEGs and the rest and trials with various medications, I continued to have szs. The Neurologist finally said, (His exact words), redface " I can continue to take your money but your problem is a phyciatric one. It's nothing I can help you with. Now there are pleanty of fine phyciatrists in the area.......".

I left the hospital thinking I was a nut case. smurf This nut case continues with szs. and with the feeling there was a mental defeciency. Kidding aside, I didn't know what was worse the szs. or the thought that they were a product of my "imagination". eyes

7 years ago, my szs. changed. Actually, they didn't but the aura did. The previous 20 years worth of auras were strong and very unpleasant. The new Szs. had hardly any aura and the actual sz. was weaker that it's predicessors.  My family practitioner sent me to a new neurologist. This man did an EEG and I could have told him the out come. Well, I was wrong. He called me in and said abnormal brain activity was detected by this latest EEG.

I was THRILLED ! tongue Why? Because there was something physical causing these szs. Much more important, I wasn't the phyciatric deficiant the 1st Dr. lead me to believe I was nono   His misdiagnosis caused me many years of anguish, of feeling that I was a "screw up", not an ill person.

Tell a person he is in need of phyciatric help long enough and he will come to believe it.

Jim in CT.

Posted 10/7/2007 8:18 AM (GMT 0)
Hi Jim and Welcome to Healingwell!

I am sorry to hear of your story and I am glad that it had a happy ending. Do you have meds that stop your sz now? It is possible that sz have a psychiatric cause rather than a physical one but it is no where near as common as abnormal brain activity. There is also a "chicken and egg" senario where you have both adn you dont know which is causing which. If your initial EEG's etc came back clean I can see why he might have jumped to that conclusion, but its a pretty big jump. I would have at least expected him to repeat the tests.

I look forward to hearing more from you

Darren

Posted 10/7/2007 4:42 PM (GMT 0)

Hi Darren,

Thanks for responding.

You asked if I was on any meds now and the answer is yes. For Szs. I take zonegran 100 mg. bid. This "controls" the szs. Nothing I've ever taken has totally eliminated them.

When my szs. began, back in the 70s, I was averaging 1 - 4 szs. a day. Today I have about 12 episodes a year. I called them "episodes" because my last one consisted of 13 szs. in the one episode. It was one hell of a day and certainly a aberation. Most are single sz. episodes and rather small in nature.

Thanks again Darren. I hope you are doing well.

Jim

Posted 10/8/2007 3:26 AM (GMT 0)

Jim,

I am so sorry you had to be treated that way for so long.  I am very glad you now have a better neurologist.  I'm sure it must have had a bit of a negative effect on your life.  A seizure is still a seizure regardless of why you are having them.  I can't believe you were treated that way.  The first neurologist obviously didn't test you thoroughly enough.  What a jerk.

Good luck and keep us posted!

Carla

Posted 10/8/2007 1:41 PM (GMT 0)
Thanks Carla and best wishes to you as well.
Jim
Posted 10/8/2007 2:03 PM (GMT 0)

Hi Jim,

I am doing fine. My last sz was December 3rd 2006 so I am still hoping to get my driving licence back at Christmas. I think its a good idea to have something that controls the episodes as it would cause more problems than you need without it.

All the best

Darren

Posted 10/8/2007 2:11 PM (GMT 0)
Hi Darren,

Wow! You've been sz-free for almost a year and are still waiting to get your license back? I thought it varied depending upon the type of sz and aura. When I have a lg. sz. I'm told not to drive for a 2 week period.

I'm not a doctor or a lawyer so I guess the rules vary from state to state. Possibly from city to city and from doctor to doctor.

Regardless, sounds like you're in for a pleasant Christmas card from your Dept of Motor Vehicles.

Take care Darren,

Jim
Posted 10/8/2007 9:33 PM (GMT 0)
HI Jim,

Things work VERY differently here in the UK! 2 weeks is a drop in the ocean... we have to be a year without a sz before the DVLA will even consider granting us a car licence. For a lorry licence, you need to be sz free AND med free for 10 years!

Darren

Posted 10/8/2007 10:57 PM (GMT 0)
Darren,

Holy Cow! There certainly are good and proper reasons to have ones license withheld yet if one is free of szs. for a specified amount of time, he should be free to provide his own transportation.

There are areas here in the states where public transportation doesn't exist. If one has to get to work and can't because of an extended restriction.......well, the poor person would lose his job.

I appreciate our communication Darren. To give you a bit more insite into my health situation, in addition to epilepsy I now have had a heart attack, 6 angioplasties, 13 cardiocaths and a bi pass. Moveing a tad lower I now have a triple A. and in May I enjoyed a triple fusion of my lumbar area, S-1, L5,4 & 3. This was a posterior and anterior proceedure.
All that said, there are so many worse things and I've been blessed with a supportive family and now have 2 new grandchildren.

You know what's funny? With all this crap it seems God, my Higher Power, only gives me one of these problems to worry about at a time. (For the most part. Everyonce in a while things over lap)

Be good my friend,

Jim
Posted 10/9/2007 1:38 AM (GMT 0)

Jim,

In the U.S. it does vary from one state to another.  In KY where I live, you have to be 90 days seizure free which I have been working on since last August. Tomorrow I will be two months seizure free!!!!!! My neurologist is at Vanderbilt which is just across the state line in TN, where you have to be six months seizure free.  He's a great neuro, by the way, but he has warned me not to plan on any shopping trips to Nashville by myself until I am six months seizure free.  I can't imagine having to wait a year.

I agree that God never puts more on us than we can handle at one time.  I am 56 and my asthma came on with a vengeance in 2002.  I continued working by taking my nebulizer to work and doing breathing treatments during the day and of course, I missed a lot of work because my asthma is so severe.  People aren't very nice when you have to miss a lot of work and that stress didn't help my asthma.

When I started having myoclonic seizures at my desk I had no idea what was happening to me, I was just trying to keep my job.  I really thought it was a side effect of all the Prednisone I've had to take for asthma.  I knew I was having a lot of problems with concentration, but I thought it was from all the stress I was under at work.  I was struggling to make year end budget decisions for the department with more and more stress being put on me because they wanted me to quit, because I was sick.

Then I was on the phone with my daughter, I was at work and I could barely talk.  I didn't want to go to the ER, but she told me she was afraid I was having a stroke.  They also thought I was having a stroke at the ER but put me through all the tests and ruled that out and sent me to a neurologist here where I live who got me to the right doctor at Vanderbilt. I now know I have a couple of different types of seizures.

I was lucky that I was 55 at the time even though I had only worked at the university for eight years, so I was eligible for early retirement, which isn't much but is gives me access to group health insurance.  A short-term disability policy turned into a long-term policy which could or could not pay until I turn 65.  At the suggestion of the HR Dept., I have applied for disability retirement  with the KY Educational Retirement System which has been turned down twice and we are now at the point where we will go into a court like setting with my attorney.  So, I've been o.k. financially.

It seems my asthma doesn't flare at the same time I'm having seizures.  I have three beautiful grandchildren and I also know there are people in much worse shape than I am.  I certainly do not miss work.

I hope you find this site as valuable as I have.  I would have been completely lost without it, Darren can vouch for that.  I only wish I had found it sooner.

Carla

Posted 10/9/2007 2:36 PM (GMT 0)
This site is designed for people who are in the dark or want to help others. Like Carla, I wish I had found it sooner. A specific problem brought me to the Depression Forum and I strolled across into Epilepsy to see if I could help answer someones questions. A little way down the line, I became MOD for Epilepsy and Depression! The help, support and resources that we make available here are so useful and we owe a lot of that to the members themselves rather than just the MODS or Admin.

Heres to everyone!

Darren

Posted 10/9/2007 3:46 PM (GMT 0)
Hi Carla,

We're close in age, 61 here. so I've got a couple of years on you.

You know what's interesting, in a way? How we simply took our earlier good health
forgranted.

We aren't old yet however, speaking for myself, there are more then a few days when I feel that way.

I wish a youthful good health to you Carla :)

Jim in CT.
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