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Old 04-21-2012, 02:50 AM   #1
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Pauline047 HB User
Epilepsy - Starts with Blackouts then Trance - NEA/Atonic seizure - HELP!

Please can anybody help me with some information.
My daughter is 20 years old and I am looking for information to help her.
Please read my story and if you can help I would be grateful. I have also looked at Atonic Seizure/Absence/Catamenial Seizure.

About 6-8 weeks ago Becky was found at the bottom of the stairwell at work, initial thoughts were she fainted or tripped on the stairs. She went to the hospital and was checked out but unusual she went into a kind of trance like state. Her speech was as if she had been drinking, no energy, lethargic, headache feeling sick this lasted for exactly 4 hours before "she came of out it". She has a CT scan as she had banged her head but all was ok.

Since then she has had around 8 blackouts and been in hospital on a few occasions she has had MRI, CT, EEG, ECG, Diabetes, Arterial blood gas test and 5 day event monitor, and a lumber puncture and been checked for Meningitis. They have also checked for infection and nothing.
She has also had an Echo-cardiogram this was performed on Monday but 1 hour before the test she was at home and had a blackout and came around at the bottom of the stairs waking to a badly brushed forehead and a split lip. I managed to get her for the test and then ended up in salford royal A&E for 4 hours, they had no idea other than asking was she on drugs!!

Symtons of what happens
No warning of the blackout
Sometimes has gone to bed with a headache prior to having a blackout which then occurs the next morning.
Feeling of unwell when in bed - feels dizzy and sick and at times has not had a blackout but has a what she describes as a' racing heart' and she feels her breathing is heavy. The feels sick and is unable to walk and her movements are like a person drunk. Her speech is slurred and unable to communicate properly. This all take at least 4 hours from start to finish.
No passing or urine - no biting her tongue
Shakes uncontrollably - whilst she is in the after period of waking up from blackout and sometime when she has been in bed as if she is cold but not cold.
One of the occasions in hospital whilst in the trance state - her right arm was twitching and in some kind of spasm I counted to 10 in between each spasm and her arm was throwing herself around. This has never happened before.

Following the blackout.
I get her to control her breathing as not to then have a panic attack - I have learned that by trying to get her to slow her breathing down helps as when she comes around she is scared and this makes it worse. I try keep her calm at all times. She has no idea whats going on in this time and on occasions talks complete nonsense she slurs badly and had no co-ordination, she feels sick and has a massive headache.

We now know that it takes 4 hours for her to be 'normal' following a blackout, its as if she has no memory of whats happened and says 'its happened again hasn't it'

Where does this happen.
Anywhere it wants to as she has no warning signs
Its happened at least 3-4 whilst she has been coming down the stairs for a total blackout - these are the worse ones as she actually causes damage to herself.
In the house
At work
At her boyfriends
In bed - not blackout but starts with a racing heart then goes into the trance state but without a blackout but has a major had headache.

The hospital initially thought it was an Arrhythmia so she has been referred to Cardiology but initial checks of the Echo-cardiogram when we were in A&E was reported as being "ok as such". It was mentioned that they wanted to test for 'Addison Disease' hospital forgot to do it!!

Where are we now.
We saw her own GP on Tuesday and discussed Addison Disease and referral to Endocrinology but until she has a full picture of blood etc they will not do it. She went to bed on Wednesday night with a headache, work up in the trance like state and got a taxi to the doctors (she isn't driving) before she saw the nurse she blackout out in the waiting room. Eventually they took the blood tests - she was poorly all day yesterday and again last night went to bed with a headache and this morning I have found her on living room floor.
She has a Cardiology review on 1st May and an outstanding Neurology appointment waiting to confirmed

How Becky feels.
Very emotionally upset
Initially I can be honest and say I think she thought she was going to die
She feels like nobody believes her -we have enough family members who have seen whats happens to her.
That the hospital dont know what they are looking for - we dont feel its a cardiology problem but we are not expects.
She very worried and wants to know whats going on with her
She feels like nobody can explain whats happening to her
She has never had anything like this before.
She hardly drinks, doesn't smoke and doesn't do drugs and is not pregnant.
About 2 years ago went through a stage of having painful kidneys and a lot of water infections - has been ok since no other illness

Our Family history
Usual stuff heart problems on my mums side - angina, heart, diabetes
Me - hearing problems

I have nobody else I can ask who I trust to give an honest opinion, the hospital have no idea whats causing this and we feel no point taking her in when she has a blackout as they treat her for 4 hours then send her home - unless she has hurt herself.

From the above do you have any idea what this could be? or what we can do with the NHS to push for tests? she should have her tests from the GP back on Monday, but we are worried that they will come back 'normal' and we will be no wiser. I am at a point where I can't leave her alone, she has stopped driving, and this is affecting her daily quality of life as she works full time.

 
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Old 05-07-2012, 02:08 PM   #2
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Join Date: May 2012
Location: seattle, washington, us
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DOT55 HB User
Re: Epilepsy - Starts with Blackouts then Trance - NEA/Atonic seizure - HELP!

First of all FEAR is the greatest disease - it can numb us - disfunction us etc. You mention NIH - have you gone on line and looked at what teaching hospital has a major neurology program - I know that the U of W medical school when my sister was young had one.
I think Cleveland Clinic is #1 in gastro surgery - Washington Hospital for heart - in our experiences sometimes it has been the intern who had the most up to date info - one at Hopkins saved my sons life

 
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