Hi sue

I used to take gabapentin or Neurontin brand name. I had no trouble with it making me feel sick only effected my gums (receeds them) but then a lot of epilepsy meds do as well. With your AHS who knows what will happen. I'll have a look on uni database to see if there is anything interesting...

Well, started taking gabapentin last night - man, my brain is fuzzy! Not sure if I've been feeling dizzy for hours or if I'm having a long "muted" seizure. Head feels so weird (like I can feel things happening/moving in my brain, literally), eyes are blurry and struggling to focus. I'm still in my pjs 'cause I'm not game enough to have a shower as I'm home alone. Yuk! Hope this doesn't last too long!

Hi Sue

Sounds scary. It's been years since I've taken this drug. I was always disorientated after the few doses of new meds but started to level out after a few days. More jumpy that anything. Any noise was about 4 times as loud as it actually was. Shakes and tired. Do you feel as if you having an outer body experience? Found some interesting stuff.

http://www.coping-with-epilepsy.com/forums/f22/outer-body-experience-550/

I'd keep my eye open to see if your rash is coming back. With your AHS you need to be careful. Did the Neuro give you any other options if you are allergic to this?

Hi SueH:)
How are you this morning?? Hope you have some company at home today!

Hi Sue

let us know how you are going?
here's hoping

Kris

Hey Cozzie and Kris

Thank you both for checking up on me! The strange fuzzy head is gone, but just feel really ... yuk. Emotional. Tired. Drained. Not coping with the kids - not that they are a handful, just struggling to think beyond myself. Very irritable. My sister took me window shopping for a couple of hours yesterday which was great - first time out of the house in days! It's wierd - I love my time alone during the day, but after a couple of days, the house feels like a prison and I crave company! Must be from years of working fulltime.

Down to about 5 - 6 seizures a day, so the gabapentin is starting to work, no rash yet but I'm paranoid - keep checking the tummy every couple of hours!

Kris, how many days to your surgery? Thinking of you lots too, and hope everything goes smoothly. And hoping all is well in your household too, Cozzie!

Sue

Look out - that might just become your new nic! ;)
All is well with us - but kids are stir-crazy after so much rain. Not sure if I can last until bed-time (theirs or mine!) ;)

Hopefully the emotional-yucks will slowly disappear, as the fuzz did (ok - actually hoping they INSTANTANEOUSLY disappear - but let's not get too greedy;)

Try to take things easy - like I said - I reckon you are AWESOME just for getting out of bed in the morning, at this point! This is huge - you need to give yourself more credit, girl! You are a very brave woman!

Remember to try to find some time just for yourself - have a cuppa, smell the roses, look at the beauty around you and......breathe....

Hugs

Hi Sue

Only 6 days until we leave but 10 until op. Everything is starting to implode here after months of good organising. Finding I'm having to chase people up everyday. The ones who need to contact me. Carer, Hospital, Passport, School, Taxi, Airport Carpark, House Keys, Rental Car etc etc.

I can see it coming down to the day we fly out giving the carer a quick run of the house then see you later. He has been here before so shouldn't be a problem. It is just the paperwork. Bluetacing notes to each of my kids doors so they remember what jobs they have to do when we are away.

Will feel a lot better once we are at the medihotel having a cup of tea.
My other half is thinking of going to an AFL game when I'm recovering in hospital. Should be an experience.

Hi everyone

Just sorted out carer and all of the above
But.......my daughter has had her wallet stolen at school
She is terrible at putting things away so maybe this we do the trick
Has her learners licence, keycards and other ID
Spent all morning cancelling cards.

But....need to get another L licence processed before we go by Friday
Apparently up to 4 weeks+ to get another.
Have to pay $70+ dollars again + photo etc.
Not happy. Hopefully get it done tomorrow.
She was looking forward to getting some practice at her friends.
This is not going to happen.

Back on topic. Did anyone see RPA tonight???.
Had the same surgery as mine explained but with left side not right temporal lobe. Very confronting but that is what it is about. Happy not to have the leftside focus as his speech was affected as well as memory. But the right side was able to take over some of the work.

While I'm trying to get my neuro to talk to me about the surgery, I am nervous because he thinks mine is in the left temporal lobe and I'm afraid of losing my speech and memory and what that will do to the kids ...

Hi Sue

Wally Lewis's focus was on the left and he made a full recovery. Just takes a bit longer with left focus as speech / memory is located in that hemisphere. Doesn't mean it won't work. My friend from the gold coast that was in melbourne with me has been talking to some people who had surgery a few months ago. A left & right focus.

Both have had no seizures since but the left focus guy had some speech therapy but nothing serious. When you get to testing they will be able to tell whether your right focus can take over the left focus roles in these areas. Basically if you can reprogram your right side to fill in the gaps left on the left side.

I wouldn't worry to much...........Kris

Hi Sue

I hope your feeling better. Your a strong woman to be able to get up and try and get on with everyday life! Probably stronger than people with half your problems!
I haven't been on for a week or two! So trying to keep up!
I hope all your plans are going well Kris! Will be thinking of you!
Cossie- Hope all is good in your household! We will have to catch up face to face one day in TMBA!
I will post about Luke in a different section!

Hi all,

Saw my epiletologist today. Wasn't meant to see him until Oct 18th but the Vimpat was increasing my seizures. He has put me on the waiting list for testing the possibility of brain surgery. No idea how long it will take before I know but seeing him again in 2 months. Until then I am off the Vimpat and onto the Gabapentin. The only one he could find that I have not yet tried....lol. All the others don't control my E or have radical side effects. He said there is a possibility that Gabapentin along with Keppra and Topomax might bring control. What possibility? Anyone out there want to bet on me? I know it is only a mild anti-E drug. Not sure I like the possible side effects either, but after 21 years and 9 drugs.......

Lynda :)

Hi Lynda

After all my worry, I ended up with no long term side effects from Gabapentin and only a minor improvement in seizure control (maybe 2 or 3 less seizures a day). My new neuro has since added Topamax to the Keppra and Gabapentin that I'm already on. I hated the first 3 weeks of depression and tiredness more memory problems, and there was no reduction in seizures, but I saw him yesterday and as the depression ended up lifting, he's upped the dose to try and stop these seizures - and as much as I hated how I felt in those three weeks, I am willing to try as I don't know how much more of this I can take! I've only had E for 12 months, but with 10-30 seizures a day for most of that time, it definitely feels like longer. I take my hat off to you and others who have lived with it uncontrolled for as long as you have.

I'm also on the waiting list now for testing in Melbourne - I hope we don't have to wait long! Good luck!

Sue

Hi Sue,

I take my hat off to YOU!!!!!!! Before taking the Vimpat I was having a seizure every 3 or 4 days and on the Vimpat it increased to one every 2 days. When first on Topomax I was seizure free for a while. Never have I had the number of seizures you have even before medication. How totally exhausting for you! My life has been fairly normal. I have been able to carry on my teaching career, bring up my gorgeous family, travel and be surrounded by a great group of friends. It is only recently since being diagnosed with a DNET that things seem to have spun out a bit for me. I will keep you posted on my journey. Let's see who the winner is...lol.

Lynda :)

Ok girls, I take my hat off to BOTH of you! :P
Actually, I can't imagine how difficult it must be to be dealing with the szs yourself & be aware of what happens. At least with M, she has no idea. It's the rest of us who are left rather frazzled & aware of the implications! (at least so far, anyway).

Having said that, she has gone almost 12mths without a Tonic Clonic which is MASSIVE!!! I'm feeling a bit out of practice - what a nice way to be for a while:)

I just wanted to pop in & say "Hi" to you both & give you a cyber hug each - 'cause I can ;)

I'll be keeping an eye out for any updates - and hoping they are good ones when they come:) Fingers & toes crossed for short waiting lists & successful outcomes, whichever road you travel! :)

Thanks Cozzie luv u 2.

Lynda xoxoxoxoxox

Thanks for the kind words, girls - it's lovely to pop in here and talk to people who understand!

Cozzie, what a milestone, that is fantastic! Cyber hug and congrats to you and M!

And Lynda, I hope we both get to Melbourne as soon as we can - now that I know I'm on that list, I'm trying not to be impatient, but I can't help myself! I just want to get it over and have my neuro's diagnosis confirmed so treatment can get under way - my neuro suspects he knows what's causing my E and surgery isn't necessarily the answer apparently, but the testing is crucial to confirm the diagnosis ... I thought I'd learnt patience by now, but obviously not!

Hiya Sue H:)
It is AWFUL waiting for what you figure will be THE answer....it was like that waiting for the genetic testing results which helped us find a name for M's syndrome. That was about 3 months, then a bit longer for hubby & I to be tested, too.

The only way I could manage was to put it completely out of my mind, to stop myself from climbing the walls. It was sooo important to us re: treatment - as it must be for you!

Wish I could push the fast forward button, but I think the batteries might be flat in my remote control ;)

So.....suggesting you keep busy & buy some good books so you don't lie awake in bed at night ;) & wishing you every success in your search for answers!

Hugs

Hi Sue,

Actually Sue I am already in Melbourne...lol. I live there. I guess it will be easier for me as I will be able to get to the hospital from home for testing and ultimately surgery if eligible.

Lynda

Hi all

We will be back at the Austin in March2011 for check up. So might catch up with you Sue. But hopefully you will get in sooner. I'm still progressing well so hopefully things will continue to stay that way. Our wait for testing didn't seem that long but I was still studying at the time so that helped a lot and kept me focussed. Maybe try some online courses that are self paced to keep yourself occupied.

Hi all

Saw the neuro again today for a check up and more chat about testing in Melbourne. He said that he's not sending me down for the surgery testing as he doesn't think that's an option at the moment. He thinks I have an autoimmune condition that is causing my epilepsy and is sending me to Melbourne for testing to confirm his diagnosis before starting the treatment which (to me) sounds pretty intense - lots of needles!

So, not sure if it's the same waiting time as it's different testing ... Cozzie, your book idea sounds great! Though the meds have me pretty sleepy most of the time at the moment and I'm asleep by 10pm most nights (that's just not me usually!), but the pins and needles in the feet from the Topamax keeps waking me up! Been thinking about doing some courses too Kris, but my brain is just mush - again, apparently as a result of the drugs and the autoimmune condition - told the neuro that I feel like I'm operating at half of what I'm used to, and that in it's self is hard to get used to - I feel so useless, because I'm used to feeling so useful! ArrggghhH!!!

Okay, going to have some ice cream with the kids in front of the TV - my eldest girl said the other day that there was one thing that she was thankful for and that was that epilepsy had given her her mum back - that absolutely floored me, I hadn't realised that I had been so focused on my career and on helping everyone else around me that I had forgotten the ones that meant the most to me!

Sue

Hi Sue

Your condition sounds very interesting but I can see why he has taken that approach. I agree that your testing will be totally different to mine. Lots of lab work with yours and not so much looking to the bad bit but your will be a process of elimination until they can find the real culprit. Makes sense that auto immune could be the problem as you have never really fit the epilepsy model from the start....

Hi Kris

Can I ask why/what you mean by "epilepsy model"?

Hi Sue

Sorry just going into my jargon...in most E cases I've come across there is a set pattern of seizures, triggers like a repeating pattern but you have had a few different symptoms or reactions that could be associated with other things.

Hi all,

I finally have heard from Melbourne and have a tentative booking for the in-patient video monitering for 2 May next year. Now need to just get through the next 7.5 months and this awful flu ...

Sue

Hiya SueH:)

YIPPEE!!!!! :)))) Wouldn't it be nice if there was a cancellation & you got in much faster?! ;)

Hi all,

I am booked in for my video monitoring at Monash Medical Centre on Nov 6th. Came as a huge surprise as I didnt expect it so soon. Already trying to organise things like what to wear, (nothing that goes over the head), what to sleep in and what to do for a week! I've just bought a snuggle suit so bet I'll look great in that!

Kris has had some great suggestions so I will probably be busy enough. Should be able to take in my laptop and let you know how I am going.

Lynda :)

Hi Lynda

The only issue I had with monitoring was my legs got a bit cold.
You can't cover them up as the video needs to see if there is any movement during a seizure. I found the air conditioner was blowing on them.
We managed to direct the flow away from me which help.
I brought a lot of my husbands shirts down that button up the front + casual shorts.
I felt like I had a long hair braid as the EEG has a clump of leads that meet at the back.
It is certainly an interesting experience.....Kris

Hi,

Oh I didn't think of that! I have short hair and haven't thought of how it will feel with all those wires attached to my head. Getting up and down off the bed will be a bit tricky. Oh well, another experience and another step forward.

Lynda :)

Hi Lynda

With the wiring when you get up you just treat it as if you were Rapunzel. Just take the weight of your hair before you get up. It isn't that uncomfortable. It is SOP - standard operating procedure after a while. I forgot on the first morning and got up a bit to quick. The nurse just had to reattach a couple of wires (with superglue) but nothing tragic. I propped myself up on the bed so most of the wiring hung over the back. You'll find your own comfy spot

Hi all.

Sue - Are you still on the Neurontin?

I'm currently on Neurontin & not happy being on it. My neuro put me on the Neurontin last November. I found the Neurontin made me tired & I had mood swings, often getting grumpy or emtional.

I saw my neuro in July & he increased my Neurontin.
Since the Neurontin was been increased I have gotten more tired in the day time & I usually have a nap after I have lunch. My mood swings have gotten worse, I get grumpy easily, often snap (usually my Mum cops it) & I also cry easily.

My seizures haven't changed since I've been on the Neurontin, I'm still taking partial seizures on a regular basis.

I spoke to Penny at the Austin last week to confirm some things to do with my Video EEG next month. While talking to Penny I asked her if while I'm in hospital for the video EEG if the specialist would be able to take me of the Neurontin (for good).

Penny said if I am unhappy with any of my epilepsy meds I just need to write down which med I am unhappy with, how it is affecting me & the specialists will look at taking me of that med.

I try to stay positive about life & am looking forward to being taken of the Neurontin if it means I wont have so many mood swings & get so snappy.

Sue - that's great news that you have a date for you video EEG. May seems a long way but I'm sure it will go quick.

Lynda - Good luck with your Video EEG.

Kris - when it comes to the wiring, if you need to get up out of the bed is it better to get up slowly?

I go into Austin Hospital for my video EEG on 8 November but Mum & I are staying at the Medi Hotel the night before. I have worked out what I'm taking in the way of clothes & just need to shove it all in the suitcase lol.

Because you never know what the weather is going to do at this time of year I'm taking both winter & summer clothes. I already have 3/4 buttoned down tops,zip down polar fleece jackets, plenty of 3/4 pants & throwing in some tracky pants (in case it gets cold). Only thing I had to buy was get summer pjs (button down top & 3/4 pants).

Mum & I have organised what to take to keep us amused & we are also hiring the tv. We are taking cards, travel board games,I'm going to get some puzzle books & Mum has a kindle to read.

We just need to get our train ticket for 7 November which we'll be doing next week.

Yes, I'm still on the Neurontin as well as Keppra. I did struggle with tiredness and mood swings initially, though it was hard to tell if it was the Neurontin or extremely high dose of Keppra (4000mg a day). I ended up finding that Vit B complex tablets helped tremendously with the fatigue and moods, and now cope quite well with 3000mg of Neurontin and 2000mg of Keppra every day - though I still have between 1 and 5 partial seizures most days too (much better than 30 a day like 14 months ago!).

So good to hear that your video EEG is next month, you must be relieved and excited that it's finally happening! I'm finding it hard to wait because we are waiting for answers from that to form a new course of treatment, and my life (and therefore my kids and hubby's life too) are all on hold until then ... I never thought I'd say this, but I miss working!

So looking forward to hearing your stories/news from your trip to the Austin!

Sue

Hi Meem / Sue

Firstly when I was on neurontin years ago I found I was extremely tired and put on weight but this was more to do with not having enough energy to exercise. I use to take Vit B complex especially the one's with a high Level of Vit B6. A lot of epilepsy meds drain the body of Vit B. I ended up getting a separate B6 to take with them. Your can overdo the B6 though so just ask the chemist if you take a separate supplement.

With monitoring they will take you off all your medication anyway for the testing. Once they start the testing process all the medications will be reviewed from scratch but definitely note the ones that upset you like Penny said. Sounds like you and Lynda will be both be in hospital around the same time but Lynda will be at Monash in Melbourne.

The cabling in the monitoring rooms is a big awkward at times but if you just take the weight of the leads before you sit up there won't be a probably. It is a learned technique. The neuro staff touch up the leads twice a day to make sure they are contacting with the scalp properly anyway.

Sue chin up....I get the feeling you will be down at the Austin before May. If you give Penny a call at the beginning of every month maybe something might happen....They will definitely get you in sooner if they can and it helps them process patients with shorter waiting periods.

Hi meem, Sue, Kris,

Great to read all your posts. I am also getting ready for my EEG monitoring. I go in on the 6th November so meem, we will be in at the same time.

I have made a list of items that I need to take. It's a bit like going on a holiday. Every day I add someting I didn't think of. Today I wrote 'pillow'. I can't sleep without my own! I have bought myself a snuggle suit which is like a baby's jump suit. It has legs and sleeves and a zip. I thought it would be good to wear at night since I can't have any blankets.

I am also taking my laptop, DVDs and CDs to keep myself entertained. I'm not sure if I will be sharing a room so earphones as well. I have put some relaxing music on my ipod as I won't be able to sleep at night. Always difficult in a strange place, especially the first night.

Meem, I agree about the Neurontin. I take Topamax, Keppra and Neurontin and after stopping all three for EEG monitoring I don't want to go back on the Neurontin either. It really has made no difference to my seizures and I have been so tired. Fortunately I see my nuero on 25th Oct before I go in so I will discuss it with him.

The worst thing for me is, the week after I come out of hospital, we have to move house. Timing never works out for me but that's life.

Lynda :)

Hi Lynda / all

I found I slept fairly well. I think it was partly due to the withdrawal of medication.
I know my husband didn't get much sleep though.
He was a bit anxious as he had never seen me unmedicated before.
Neither had I. Atleast I was in the right place for seizures.

One of the nurses mentioned a guy had 2 monitoring sessions (2 x 2 weeks)
They were conducted a few months apart but he had no seizures at all in both.
Which would have been depressing! During that time he was still on medication.
He had fairly regular seizures but apparently they stopped once he was plugged in.

This is why the first option now is to remove the medication and stress your body.
In my case they gradually reduced the medication over a few days.
I doubt they will stop them immediately as the withdrawals would not be much fun.
I had the shakes for a while but that soon passed.

But as soon as they have the info they are gradually reintroduced. Usually this is the time they trail new and different doses of medication while you are in a controlled environment. So you might have a few days trialling meds before they let you out.
Everyone is different though and it is done on a case by case basis.

Good luck, Meem & Lynda (drop us an email if you are up to it) .........Kris

Hi Sue/Lynda & Kris,

When my neuro 1st put me on Neurontin he started me of with 400mg (3 times day), then in July he doubled the Neurontin to 800mg (3 times a day). I am also on tegretol 400mg (2 times a day) & Keppra 1500mg (2 times day).

I know Keppra is nicknamed 'Keprage' as one of it's main side effects is mood swings, temper, depression etc. I never had any problems with my mood when I was on just Tegretol & keppra.

When i spoke to Penny last week she explained to me how they will gradualy reduce my meds starting of with the Neurontin. She said at 1st they want to monitor my regular seizures (partials) before I start taking tonic clonics.

Lynda - I am also taking my own pillow because it is more comfy then the hospital pillows lol. Also i can use the pillow if I want to sleep on the train.

Sue - The idea of video EEG is really interesting but I'm sure I'll probably get nervous closer to the date. Kris will probably agree with me when I say that Penny is a really nice person & very helpful.

I am currently unemployed & have to lodge a dole form in every fortnight. I am due to lodge a dole form in while I will be having the Video EEG. I am having trouble trying to get Centrelink to understand that it's too hard to lodge a dole form while I am in hospital & it's too hard to get a medical certificate until after I have the Video EEG.

I contacted Penny Yesterday & left message for her to ask if she'd be able to provide a letter for Centrelink explaining how I will be in hospital. She rang me back this afternoon & left message for me to let me know that she was writing a letter for me to give to Centrelink.
Hopefully Penny's letter will help & Centrelink will change my form lodgements to 6 weekly or 3 monthly.

Kris - I usually take meds in the morning with my breakfast. Do you know if I still take my morning meds before I go into hospital on the Monday or if the hospital prefer that I don't take my meds that morning?

Em

Hi Meem

What they did with me is you take everything as normal until your hooked up to the machine then they take your meds away and lock them in a draw near the bed. You are then reliant on the nursing staff to administer your medication. They have to lock them up as some people take medication during seizures (I did once).

Hi Kris -

Thanks for the info. I read somewhere that when you're in for the Video EEG the specialists lock up your meds & give you tehir own so they can monitor you & then after the monitoring is over you will be given enough meds to last you about a week after you go home.

The 1st time I had spoken to Penny I asked her if I needed to bring 2 weeks worth of meds. She said no I only needed to bring the meds I'll take before I go to hospital & enough for teh specialists to see what meds I am on.

I intend to just take a copy of the boxes of my meds & a sheet of each med for the specialist. I will fill my pill box up before I go away & will take a my scriopts with me just in case I did need to get some filled.

Hi Meem

I took my scripts with me as well but ended up getting new scripts with different size tablets. For example, if you were on 500mg Keppra during your stay they preferred you to take 500mg tablets and not 2 x 250mg I had. I am currently taking the 2x250mg to use up the script but after that is completed I'll go back to the 500mg. They do seem to release a bit to quickly as there is more surface area for the pill to dissolve.

While we are talking Keppra the Kepprage is very real. When I was in Melbourne they mentioned it and intend to take me off Keppra at my checkup in May2011. I will stay on Lamictal though for probably a bit longer. It all depends on my reaction after the removal of Keppra. If there is on option to get rid of one medication Keppra was the first choice.

Taking the empty boxes is a good idea as you can forget exactly what size tablets you take and especially if you are on few different meds as well.

Good luck with everything and drop us a message when you feel up to it.....Kris

Hi all,

After reading all this I just referred to the letter I got from Monash Medical Centre. I does not mention bringing medications or prescriptions at all. Maybe because I see my epileptologist there they have all my data on computer and can look it up. I think I will just do what you are doing Meem. Bring my tablet box and my prescriptions. They can work the rest out from there.

Lynda :)

Hi Lynda

I definitely took a lot more material than I needed but I couldn't just go home and get it.
As your based in Melbourne you will probably be ok. I had folders of paperwork from my neuro in Qld as we didn't know what info was forwarded on...A lot of the neuros at the Austin preferred having a look at the physical MRI xray and not the one scanned into the computer. Also a lot of them wanted copies of the medical reports in medical jargon. The little things seemed to make a lot of difference....Good luck with the testing both of you....

Hi Lynda & Kris,

I don't take any medical reports or anything like that but I do try to provide my neuro/epiologist with as much info as I can.

My epiologist Prof Berkovic is based at Austin Hospital, when I met him in June I gave him a 19 page documet which I'd typed up. The document explained my history of epilepsy as well as all the seizures I've had in the last 8 years.

Penny told me that Prof Berkovic's clinic gave her a copy of the document I gave him so all i need to do is give her a print out of any seizures I've had since June.

I took my MRI films with me when I was in Melbourne in September & gave them to Penny to look after. That way I didn't have to keep carrying them back & forth on the train.

Lynda - If you are unsure of what you need to take in the way of meds are you able to contact someone at the hospital to find out more info?

Hi Meem, Kris, Sue and friends,

I wish I had read your advice about meds before I saw my epileptologist this morning. I could have asked him then! I didn't think of that as I had so many other things to discuss. Oh well, I guess I'll just take some and my husband can take them home if necessary. One of the things he did suggest was coming off the Neurontin. Yaaayyyy! I am reducing them to 2 per day, not taking the middle of the day tablet. He said he would tell them in the EEG video monitoring not to put me back on them but just Topamax and Keppra. Maybe I'll start to feel normal again. :)

It was an amazing consultation. We actually talked about surgery. My surgeon (if I actually qualify for surgery) is Associate Professor Michael Murphy and it will be at St. Vincent's Hospital. I will be having another MRI as soon as I receive the paper work and phychologist and phychiatrist consultations. I don't see my epileptologist to arrange these until Jan 23rd. Then I guess I'll be on the waiting list. I'm sure all the data that my epileptologist has on me will be enough for my video EEG monitoring and he will be able to send it to St. Vincents.

I asked about going private so I didn't have to wait as long but my ep said maybe it is better to be public and wait longer to get my head around the process. Anyway we will discuss it at the next consultation.

When we were leaving the hospital I wandered around the nuero dept to see if I could see people being monitored. No luck. I saw a lady being wheeled in on a bed with electrodes on her head. ????

2 weeks to go - video EEG for us!

Lynda :)

Hi Lynda

My brain was scrambled from all the planning before I went into monitoring. There are some many little things that spring up while you are there so that's why I took everything.

The Austin gave me a huge handled plastic bag from Xray to carry all the A4 paperwork + MRI's around in. They were copying my neuro letters and sections of EEG's that were torn off. I didn't have to go into lots of detail as I had it all in writing. With getting off meds they removed my midday dose as well.

Michael Murphy was involved in that Tasmanian man's implant surgery from memory. Your might end up on the 'Medical Emergency' program at St. Vincents that is screened on Austar / Foxtel. How cool would that be. Your getting filmed anyway.

About seeing people with electrodes. I was wheelchaired back to the monitoring rooms from the Spect scan with mine still in.

Hi Lynda,

That's great news about the epiologist taking you of the neuro :D.

I am sure you would have had heaps of things to think about & ask your epiologist with your Video EEG so close.

I had read that teh SPECT scan gets done when you are seizure free & just after you ahve a seizure while you are in for Video EEG (as long as you have a seizure in the day time when the SPECT scans available.)

When I met Penny at the Austin I asked her when you have a seizure during monitoring do the electrodes get taken of so you can have the SPECT. She explained that they just wheel you down with the electrodes still connected to you.

My Mum & I went & booked our train tickets Today so it's all becoming very real now :).

Hi Meem, Lynda

While you need to have a seizure during SPECT scan hours the most important thing is getting the radioactive tracer injection in during the seizure.

If the staff don't get to you while your having the seizure you will miss an opportunity. After the seizure is over they won't inject as the activity has stopped and nothing will register on the SPECT scan. The tracer shows up the metabolic activity in the brain so during a seizure it pin points exactly where the focus is located

From memory I was only allowed 2 injections per day due to them being radioactive. I couldn't hug anyone for a couple of hours after. This is where it is vital someone is watching you at close quarters and not rely on the staff solely to pick them up. There is an alarm in the room you hit and the nurses will come running. My husband hit the buzzer and the nurse nearly knocked him over getting to me.

Also you will have a permanent needle with plug in back of your hand for easy injecting. It is flushed out a few times a day to keep things clear for the ceretec. It is a little uncomfortable to start with but they tape it up well so it won't move.

It might pay to check the SPECT scan hours...........Kris

Man, I'm going to have to get over my fear of needles, aren't I?!? I know mine is a while away, but it already makes me feel sick reading about the drip and injections ... yuk ... I know I need this, but they are going to want to give me some valium to calm me down before they put the drip in. I have shocking veins, and last time a hospital put in a drip it took 8 attempts, and when I had a blood test a couple of weeks ago it took 2 failed attempts before they did it in the back of my hand which ached!

I might avoid this thread until closer to the time - no need to worry longer than necessary! Good luck girls!

Sue

Luke didn't ended up having a seizure for his spect scan! They still injected him with the radiation. and did the scan and said they can now do another one with a seizure next and than take one away from the other! So very interesting!!

Hey once you have the drip in you will be fine! they just put everything through the drip! :D