The month from hell...

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Torak

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Hiya everyone,

I never want to see another July like this last one. Bored to tears, followed by the worst 2 weeks I've ever had.

I went to hospital (Kings College Hospital) and had the MRI, PET and 9 days of EEG in early july.

Annoying.

On the sunday, I had to phone up to check that a bed was availiable. It wasn't. I sat on my backside and had 3 complex partial seizures.

Monday, I went up to London with my parents, had a complex partial in the Day Room waiting for a bed and another trying to sleep that night (not wired up to the eeg)

I then had another on tuesday literally 2 minutes before I was injected for the PET scan.

Then I was wired up and... nothing... about 6 simple partials (the technician told me that only 30% of simple partials show up on EEG because they affect such small area of the brain).

The neurologist said that I had abnormal EEG patterns in my sleep, which are typical for anyone with epilepsy.

10 days of yawn, with only David Eddings books and crap games on my laptop for company.

Then my parents picked me up (on a wednesday) and off back home.

Two days later my father had a heart attack and spent 13 days in hospital. The first was mild, but the second in the lab during the angiogram was major and it was touch and go for a while. The blood clotted in the coronary artery while they were putting stents in. It could have happened any time, just a miracle that he was in the lab at the time and they saved his life.

But he's going to be ok, thank god. Out of hospital and resting. Things like this really made me really appreciate just how much I love my father and just how strong my mother is for coping with all this.

Best wishes everyone, hoping you are having a good summer.
 
Your father was INCREDIBLY lucky! He could not have been in a better place to have that heart attack.

Sorry your summer has been crappy, we all have them from time to time.

Hope you are feeling better and send you dad our best wishes, too!
 
Thanks *hug*

It makes you realise how little the plastic cr@p you see in the world means and how much the people you love mean, what the real value of life is.
 
Isn't that the truth
Easy to get sucked in to it all when life is running far too smoothly though


The neurologist said that I had abnormal EEG patterns in my sleep, which are typical for anyone with epilepsy.
I am going to disagree with this. My daughters first EEG was abnormal and all since have been normal. She did have a VEEG and it was normal during her sleep.
However she went on to average 5-6 TC seizures a month.

Now after stabilizing brain function with NFB she has had none this month.
 
Hi Torak - Wow, you did have an incredible July. I'm glad you and your family all made it through and are recovering. (((Torak))) And I'm glad it's August !!

I had my first TC seizure Nov. 1, 1990, and the following EEG showed an abnormal pattern but not one that said epilepsy according to the docs. But because all other tests were fine the idiot docs said I did have idiopathic epilepsy. All the many EEGs since then have been 100% clear but the many partial complex seizures and several TCs continued. For me the EEG meant nothing.

The VEEGs I've had did cause seizures!! Lots of 'em and did prove that I had a brain tumor causing the seizures.

Isn't it funny that we all have doctors that tell us all different things?
 
Isn't that the truth
Easy to get sucked in to it all when life is running far too smoothly though



I am going to disagree with this. My daughters first EEG was abnormal and all since have been normal. She did have a VEEG and it was normal during her sleep.
However she went on to average 5-6 TC seizures a month.

Now after stabilizing brain function with NFB she has had none this month.

I guess it depends on the form of epilepsy. I have TLE (left temporal lobe I think) and have all my TC seizures when asleep (apart from 2, one at Uni aged 19, one in the middle of Charing Cross Station in London in the rush hour aged 23).

Could be interesting to see the PET scan results tho, with the CP seizure happening 2 mins before the radioactive sugar injection. Going back to London for the results on 28th of August (i hate London).
 
I do find all of the testing to be quite interesting, just not infallible. Tests can be stored in a file, yet instinct is blown away with the wind. Keep journals, with thoughts, feelings, nutritional changes, emotional changes, body functions etc. This begins to tell a story that you can use to your favor.

I have backed away from labeling my daughters seizures. All I know is she has had more than two so it is classified as Epilepsy. There has never been a through investigation as to why this is happening, only methods to control it. I see that as similar to a piece of duct tape on a gas pipe. I search for why, and the tests that they have given her have not helped me much to figure this out. My instincts have however and I am guided by them. To some this might be voodo practices, and yet when hormones are playing a factor, I make note. When body functions are not daily and healthy, I make note. When nutritional choices are toward the SAD diet, and seizures occur, I make note of it.

Rebecca's story is beginning to unfold and I have created a diary of it.
This is done without medication.
 
Hi Torak, nice to see you again. Sounds like you've had a rough month. Hope the docs at King's can make sense of the test results for you.
 
Hiya everyone,

I never want to see another July like this last one. Bored to tears, followed by the worst 2 weeks I've ever had.




Yup, July sucked big time! But don't worry I have it on good authority that Aug and Sep are gonna rock!
 
Good to see you again Torak, and so sorry you've
had to experience a double dilemma of two different
things going on. However, I would have to disagree
with Robin's post; I've had tons of abnormal EEG's,
grossly abnormal EEG's, Clinicals, Sub-Clinicals, and
Epileptiforms - Neurologists / Epileptologists and even
Techs have tendencies of their "own interpretations"
depending on where they are ...

Why do I imply this ramifications?

Three things:

1) They can be "Old School"

2) They can be "Out of Date"

3) They can be "Up to Date but stuck with Old School
and Out of Date Terminology interchangeably with the
new terminology". (In with the new but set in their ways
with the old would be another way to phrase it)

There's nothing wrong with it, some Doctors just would
rather imply a basic simple layman's yadda, yadda, yadda;
than to go into the fine small print because people tend
to become 'fearful and overwhelmed' and thinking that
they are going to die. So to imply it's "abnormal" sounds
better than to state you've got mesial temporal lobe on
your .... blah, blah, blah ... and leaving you like you're
completely doomed!

It all depends on the Medical Personnel's approach and
attitude - some are laid back and relaxed and while some
others are not, for we all have different personalities.

I am not implying that Robin's post is wrong - but the
above post would expound it more clearly.

Hope you're BOTH feeling better soon!

hugs.gif
 
Wow! What an incredibly stressful time for you. Hopefully your life will calm down a bit. Could the anticipation of those tests cause a seizure?

I've heard there are 2 types of stents. Hopefully your dad had the better, newer type. My dad had stents for over 7 years now. He was encouraged to walk a lot. With the extreme heat, he now goes to a local air conditioned indoor mall and does his indoor walk every day faithfully.

Welcome!
 
Awwwwwwwww,

I hope things get better for you in August and the rest of the year......:woot::woot: Let us know if you need anything. We'll be here for you, I promise.
 
So glad your Father is doing better. I lost my Dad during heart surgery in 2000. Though, his problem was arythmias, not blockages. I will say an extra prayer for your Dad.

I hope your next trip to London is beneficial. I am not much of a fan of big cities myself.

:cheers:
 
Oh good merciful heavens! You really have had a horrible month of July! I'll keep you and your father in my prayers.
 
Thanks for the messages of support everyone.

Bit annoying last monday too, as I had 4 TC and 6 CP seizures, most I've ever had in one day. My mother called an ambulance, and I had to have blood tests for medication levels and have my shoulder x-rayed (hypermobile joint, they thought I may have dislocated it but it was fine, just very sore where I fell out of bed during a seizure and landed on it awkwardly).

Interestingly, the doctor in A&E said that my records & report from Kings & St Thomas' show that maybe there is something that they can do, so maybe the MRI or PET came up with some interesting results.

He didn't go into any more detail than that, and i'm off to London again on 28th August anyway.
 
What area do you come from, and how come you have such good treatment?? I'm jealous!!! It's taken me 5 years to get to see a neuro who specialises in Epilepsy (going to my 1st appointment at Queen's on mon 18th), all I've had in Colchester in that time is one appointment with a UROLOGIST who had a 'special interest in neurology' ( NO neuro in our PCT at the time), one appointment with a neuro who had been sacked by the PCT after a barrage of complaints about his conduct, was working privately, and seeing clients 'on behalf of the PCT'??!! and one appointment by another neuro who was so dis-interested in my case that he said to me " As you ignored the fact that my colleage ( the one who had been sacked, remember!) told you that your lifestyle was causing your Epilepsy (he had told me I had caused Epilepsy by having 3 children with 3 different partners) I can't see that I can do anything to help you." And promptly discharged me back to the care of my GP. It's taken me another 9 months of fighting to get myself back under ANY neurologist,despite daily seizures. I'm REALLY hoping that the neuro I see at Queens is different!!!! We dont even have a single Epilepsy nurse in our PCT! the closest is at least 45 miles away!
 
What area do you come from, and how come you have such good treatment?? I'm jealous!!! It's taken me 5 years to get to see a neuro who specialises in Epilepsy (going to my 1st appointment at Queen's on mon 18th), all I've had in Colchester in that time is one appointment with a UROLOGIST who had a 'special interest in neurology' ( NO neuro in our PCT at the time), one appointment with a neuro who had been sacked by the PCT after a barrage of complaints about his conduct, was working privately, and seeing clients 'on behalf of the PCT'??!! and one appointment by another neuro who was so dis-interested in my case that he said to me " As you ignored the fact that my colleage ( the one who had been sacked, remember!) told you that your lifestyle was causing your Epilepsy (he had told me I had caused Epilepsy by having 3 children with 3 different partners) I can't see that I can do anything to help you." And promptly discharged me back to the care of my GP. It's taken me another 9 months of fighting to get myself back under ANY neurologist,despite daily seizures. I'm REALLY hoping that the neuro I see at Queens is different!!!! We dont even have a single Epilepsy nurse in our PCT! the closest is at least 45 miles away!

It sounds like the doctor you see flies south with the ducks going "quack quack quack".

Under NHS rules you have the right to a referral to a specialist unit if treatment is unsuccesful, and the nearest one to you is Kings College Hospital I believe. There are very few hospitals with video EEG or PET facilities in the UK. Kings has a telemetry unit and MRI scanner, St Thomas down the road from there has a PET scanner.

They tried to persuade me that Watford General was a specialist unit (where I used to live), but it's not. I made it clear to them I know what I'm talking about, and my neuro at my local trust (Conquest Hospital in Hastings) referred me to Kings with no further problems.

If you have problems with the neuro at your hospital, contact the NHS trust and speak to the Patient Liason Officer and make a complaint. My sister used to work for an NHS trust and when the word "complaint" is mentioned then it works wonders... brown trousers time...

Make no bones about it, you have certain rights under NHS rules and turn and twist as they might try, they cannot break them... if they do, the next step is legal advice, possibly contacting the Disability Rights Commission.
 
Cheers for the Info, they've sent me to Queen's, as that still classes as Essex??!! I'm going to give it a go, I can't wait ANY longer to see a neuro. Will update on monday night!!
 
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