Little advice required

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Rg1
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 12/22/2008 12:56 AM (GMT -7)   
Hi all,
 
this is my first post on here.
 
Right I have had about eight seizures so far and the last one when they took me in the diagnosed me with epilepsy and the doctors I found were abismal because in the past they have put the episodes down as funny turns and not fits because of the complications it can cause if the diagnosis turns out to be wrong. I have given my driving licence up for 6 months already. The seizures started in June this year and it went 3 months before I had another. The common factor seems to be sleep related and stress because sometimes I only have 2-3 hrs sleep a night. They usually happen after Ive had a doctors/hospital appointment which means only a couple of hours sleep and then up early for the appointment. I have had numerous tests CT scan, ECG, EEG and the EEG said it showed no Epileptic activity. People have mentioned pseudo seizures or anxiety attacks. The way I usuallly go is I feel very sick first then my ears start ringing and I have been told I dont jerk just go a bit stiff. I do bite my tongue but sometimes its just a nip. After it I just feel as if somebody has woke me up from sleep and sometimes a bit confused but not that bad - I mean I can't be that confused because it was me that noticed the ambulance had taken the wrong turn to the hospital. I have never slept very well throughout my life and have had these sickly feelings even when I was at school and it was usually after a late night I had them - now could it be the sleep causing this and if so why have I only started having the seizures at 33. They put me on medication until I have seen my GP but I don't want to be taking medication for nothing because all the other doctors at the hospital have said it doesn't look like epilepsy - more like anxiety attacks brought on by worry and stress. I have been referred to a Neurologist in the new year but will probably go private knowing the waiting time with the NHS. Im just annoyed the way the doctors seem to diagnose without any real conclusive proof because if the EEG said it showed Epileptic activity I could understand - I mean how is it usually diagnosed.
 
I have also had an initial meeting with a pshycologist who says the ears ringing is a common thing with an anxiety attack

Post Edited (Rg1) : 12/22/2008 12:59:44 AM (GMT-7)


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 12/22/2008 4:30 AM (GMT -7)   
Hi there and Welcome to HealingWell!

Diagnosing Epilepsy isnt completely reliant on a positive EEG. I am from the UK so things may vary slightly in the US but I wouldnt have thought too much. When making a diagnosis, physicians will look at past medical history, family history, signs & symptoms from the seizures as well as running EEGs. There is a type of EEG where they monitor you overnight by video which may be useful to you if you are having sleep problems as well.

Sleep & Stress are very common triggers in Epilepsy (Both will trigger mine) so I am not surprised to hear that. Have you seen a neurologist?

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
 


Rg1
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 12/22/2008 8:13 AM (GMT -7)   
Hi Darren,

Thanks for reply - I'm in the UK myself - I've been referred to a neurologist but Im probably going to try and see a private one knowing what our NHS is like because I could still be waiting this time next year. I just wonder how common it is when you hear of people having a couple and then never having them again.

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 12/23/2008 12:12 PM (GMT -7)   
Rg1,
 
It's not uncommon to have seizures and then go several years without one.
The seizure activity could be burried deep in the brain and can't be detected on most tests so in many cases it's hard to diagnose.
 
You could go several years with no seizure, it sort of goes into "remission" and then at a later date, sometimes years, something triggers it again.
 
Your Neurologist may choose to keep you on meds the whole time as a bit of an insurance policy but if you insist on going off all meds, you should go through your Doctor and you will have to give up your drivers licence for about two years and go seizure free during that time.
 
I speak from 28 years experience with epilepsy. My case was almost the same as yours.         I had my first seizure in 1979 and then nothing 'til 2002, 2004, 2006.
 
I was able to keep my drivers licence the whole time cuz I was on medication and my seizures were controlled ~'til 2002 cuz I had a seizure in a parking lot and hit another car.
 
Randy
Diagnosed with Epilepsy & Ulcerative Colitis.
Current Medications: Diantin 275mg, Pheonobarb 150mg, Asocol 3,000 mg.


Rg1
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 12/24/2008 3:33 AM (GMT -7)   
Maybe I've always had it but mild because in the past when I was young if I ate certain foods I would get the nauseaus feelings but they would pass quickly and I just put it down to eating something that didn't agree with me.
 
The Consultant  that saw me on the day I was in said it sounded like a mild form but again you just see the one thats on duty and not one that specialises in it.

The main thing that's annoyed me is the fact that the NHS just hand out tablets like smarties (Tegretol 200mg) without a proper investigation into it. I know it sounds stupid but my trigger seems to be doctors because Ive always seen a doctor either on the day or the day before of me having one.

Post Edited (Rg1) : 12/24/2008 3:42:19 AM (GMT-7)


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 12/27/2008 2:04 AM (GMT -7)   
Perhaps the epilepsy is stress related? There is bound to be increased levels of anxiety / stress associated with going to the doctor (From what you ahve written so far) so I wonder if that may be a trigger?

I agree with your comments RE: the NHS. Unfortunately investigations cost money and thats not something the NHS likes spending since it has financial problems. You should push for an investigation though... "He who shouts loudest gets noticed first"

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
 


Aurora60
Veteran Member


Date Joined Jul 2006
Total Posts : 1249
   Posted 12/27/2008 12:18 PM (GMT -7)   

Hi Rg1, My son has epilepsy.  He didn't have his first seizure until he was 19.  His neurologist said he probably was born with it but the seizures didn't present themselves until later.  He went on dilantin for 12 yrs and was almost seizure free, with just a few occuring.  about 4 yrs ago his seizures went out of control.  I found a new neurologist and he did many tests and put my son on 3 different meds.  He has a yearly EEG and they never show any seizure activity.  Only once did he have an EEG when he was having a seizure.  You need to see a neurologist that specializes in epilepsy.  I don't know how the system works in the UK but that would be my recommendation to get an expert on diagnosing epilepsy.  The one thing my son's neurologist told him was that sleep is very important to keep from having seizures.  And staying calm and not stressing yourself.  You need at least 8 hrs of sleep each night. You have to try to keep yourself calm and stay away from any situation or anyone who causes you stress. But the key to staying seizure free is to get a lot of rest at night. I hope I have been of some help to you.

Aurora

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 5:36 AM (GMT -7)
There are a total of 2,734,003 posts in 301,165 threads.
View Active Threads


Who's Online
This forum has 151301 registered members. Please welcome our newest member, BrisaMeadows.
255 Guest(s), 11 Registered Member(s) are currently online.  Details
Bui, wthj53, THE HAPPY TURTLE, Joan M, AngelsmamaDorseysdaughter, Smeadley, johndoss, Bobby Mac, SharonZ, TiredOfIssues, straydog


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer