Doctor is talking crazy.

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Dawn 1967
New Member


Date Joined Dec 2004
Total Posts : 8
   Posted 1/10/2005 11:22 AM (GMT -7)   
confused  What do you do when you have non epileptic seizures and your doctor tells you at one point that you can't work and drive. I have been like this since October. Now he tells me that i'm able to work and drive and i have these seizures three times a day and i never know when they are going to happen. Any advice for me will help. confused I'm thinking about finding a new doctor who can treat me like a person and not a faker. confused

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 1/10/2005 12:50 PM (GMT -7)   
I think I wrote to you once already, but if not here is my opinion. GET a secong opinion. You need one. I had two different Neuros working with me after my first TC in JULY... One thought I wasn't even having seizures...non epileptic or epileptic. He thought I was passing out. He was a bum. You need a second opinion. Especially if you are very unhappy with your current treatment. If you have insurance go for it and get an EEG if it is covered. Keep us updated. I was told yeah you can work and go to school, just not drive there for 6 months. Yeah right who is gonna take me everywhere.... I didn't want to be at anyones mercy. Feel better and take care. Tracy
[color=purple>Tracy</FONT>
<FONT]1000 MG daily Keppra[/color]

[color=gray>&]

<FONT color=gray>Wishing Joy to the world[/color]


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/10/2005 1:16 PM (GMT -7)   
Yes, find a new doctor! I have had my share of doctors who do not treat us right or even make sense in what they tell us. (yes, he shows all the signs of it being epilepsy but let us ignore all that and treat something else)


I hope you can get a second (third, fourth, ) opinion......Hang in there

epileptic_Cajun
Regular Member


Date Joined Dec 2004
Total Posts : 45
   Posted 1/10/2005 4:19 PM (GMT -7)   
I agree with Kayakmom about a second, third or even an 4th opinion about your seizures. Epilepsy, if you do have it, is NOTHING to play games with.

They need to get their acts together, and quit horsing around with this.

They need to get an EEG ordered, Sleep-deprived, or even a 48 hour office stay with video telemetry.

The most excellent form of diagnoses is the VEEG for longer than 5 days.

If your seizures are truly epileptic in nature it will come across the monitor with electrical activity abnormalities. Spikes, waves, spike-and-waves, sharp spikes, sharp waves, slowing over a localized area, and high voltage generalized activity are all something that shouldn't be there.

Each seizure usually has its own EEG pattern, characteristics, and symptomology. NO two seizures are alike.

NES DOES NOT produce abnormal electrical activity during a "so-called" seizure. Sometimes, and I mean sometimes, a person can have a Simple Partial seizure that originates from deep within the lateral portion of the Temporal lobe(s). It it so deep that normal scalp electrodes can't get it. But VEEG does.

They usually try to match up what your body is physically doing during the seizure and the electrophysiology of the EEG, and if it is a for real seizure then there would be both clinical manifestations and abnormal electrical activity occuring together at the same time.

Seizures can't tell time, or go in cycles at the same time each day. That, or your EEG may have been what tipped him off.

I had spiking, and slow waves during 2 EEGs, and high voltage garbage that resembled a generlized seizure in the other 2.

There was no doubt about mine.

Nancy
31 years old--born with epilepsy--undiagnosed for over 25 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 concussions, and shingles on the brain.

Initially diagnosed last April, and it was confirmed this March after a 9-day stay in the EMU.

Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.

I have epileptic aura, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures (nocturnal), and a reflex epilepsy as well with Absence and Myoclonic seizures. Myoclonics do occur as regular seizures in me, not just as a result of photic responses.

I failed 7 other drugs.

I take Depakote-1000 mgs and Neurontin--3600 mgs

--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!


RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 1/11/2005 9:30 AM (GMT -7)   

Dawn1967,

I can't believe your Doc. said that.

I agree with kaymom and Daisy9980, get a second or 3rd opinion, especially because driving is an issue.

Randy

 


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


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/12/2005 11:58 AM (GMT -7)   
How are you doing today?

Huntress
New Member


Date Joined Jan 2005
Total Posts : 9
   Posted 1/24/2005 5:20 PM (GMT -7)   
Hello. I've just been diagnosed with complex partial seizure disorder. I've had over 25 in the last 7 weeks. It's scared the bejeez out of my three kids and started with this fourth pregnancy. I'm in the 2nd trimester, so birth defects are less of an issue. My doc wants me to try lamectil. It seems scary. I am looking at trileptal and barbita. My mom is an rn who sees a lot of seizure patients and hates all the meds - she especially doesn't like lamectil, neurontin, and dilantin. Thoughts and input about trileptal and barbita?

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 1/25/2005 12:06 AM (GMT -7)   

Huntress,  Hmmmm    25 in 7 weeks, Do you think that stress could be a major factor and causing a trigger to a seizure (could be stress that you're keeping inside and you don't see it)or are you on any other meds (cold meds that contain decongestant or antihistime)that might be having a negative effect on your current meds?? That's just a thought. yeah

Stay away from dilantin, when I was first put on it in 1979, there wasn't too much else around and it has "screwed me up" big time.

Hope everything works out for the best and good luck with that 4th baby.

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


Huntress
New Member


Date Joined Jan 2005
Total Posts : 9
   Posted 1/25/2005 4:57 AM (GMT -7)   

Thank you for welcoming me.

Stress...well...we just moved two months ago. The home we bought was supposed to have a waterproofed basement and it's flooded all over the new carpet and walls and all of our stuff,,,that can't be helping, I suppose...

No decongestants????  I knew lack of rest, weird lights, and some smells trigger this, not sinus meds.

I take sudafed often during pregnancy, it's the only thing that helps with sinus problems/infections. My neuro said nothing! What is the alternative to hellish sinus infections?

How are you all doing out there? I hope you're well. If you feel like telling me a bit bout yourselves, please do.

 

 


Huntress
New Member


Date Joined Jan 2005
Total Posts : 9
   Posted 1/25/2005 4:59 AM (GMT -7)   

Also, to the mom who lost her son...I'm so, so, sorry for your loss. I'm proud that you are endeavoring to educate.

 


Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 1/25/2005 6:52 AM (GMT -7)   
HI huntress check out our thread ROLE CALL... we started it so some of the newer members could learn a little about us. Take care, Tracy
 


RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 1/25/2005 2:13 PM (GMT -7)   
Huntress said...

Thank you for welcoming me.

Stress...well...we just moved two months ago. The home we bought was supposed to have a waterproofed basement and it's flooded all over the new carpet and walls and all of our stuff,,,that can't be helping, I suppose...

No decongestants????  I knew lack of rest, weird lights, and some smells trigger this, not sinus meds.

I take sudafed often during pregnancy, it's the only thing that helps with sinus problems/infections. My neuro said nothing! What is the alternative to hellish sinus infections?

How are you all doing out there? I hope you're well. If you feel like telling me a bit bout yourselves, please do.

 

 

I've been told by my neurologist and family Doctor that, If I (you)should happen to catch a cold or the flu , Since I'm on medication for my EP, I should not take any over the counter medications, especially the ones that contain DECONGESTANT and ANTIHISTIMINE as they can cause internal bleeding or even massive nose bleeds.
When they mix with the other meds that I'm (you're)on, they can also trigger a seizure. nono
 
Randy


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


DBG
Regular Member


Date Joined Sep 2004
Total Posts : 235
   Posted 1/26/2005 6:31 PM (GMT -7)   
Hi Dawn, I went so many years receiving bad treatment from neuros until I found my epileptologist about 7 years ago.  Unfortunately he retired this month but he taught me that good/great Dr's are out there and I won't accept anything less.  In fact this last month I saw a new epi and after the first visit I left him a message about an eeg I had done.  Apparently he doesn't DO phone calls and expected me to come in instead of calling me back.  He got wrote off my list immediately and i've since seen another epi this week who I think I will like alot.  Don't give up, cause good one's are out there and we deserve them.
Christine
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