Almost time

[CQ:)]

Hi all,

I'm usually a pretty happy person & try not to let things get to me but this week I was feeling a bit flat which did get to me a little bit.

On Monday I had an annoying headache which hung around all day, I didn't feel very motivated & just spent a lot of the day sighing. As the day went on I had this feeling deep down that maybe the way I was feeling was a warning that I might have an aura. I never did have an aura & felt silly for thinking that I might have an aura. I volunteered at the charity shop on Monday, my boss realised I wasn't feeling too well or really motivated, so he kept asking me how my headache was & ended up driving me home early.

I had a terrible sleep on Tuesday night, I woke up a few times & was just restless. On Wednesday I was a bit tired after having a bad night, felt down & felt like I could cry at the drop of a pin. I haven't been real busy & haven't had any stress in my life lately so the idea that I was feeling down bothered me.
I volunteered at the charity shop again on Wednesday, my boss picked me up that morning. When I saw him he asked how I was & I said crap then started to cry. I've known my boss for 8 years, he has seen me get upset quite a few times over silly things before so he just let me have my cry then told me it was ok to have a bad day because we all have bad days.
My boss did offer to take me home but I couldn't see the point of sitting at home & said I'd be fine.

This was the 1st time since the surgery that I had even wondered if I might have an aura/seizure or felt really down.
After talking to my boss I was still feeling down & decided that it might help if I sent a email to my neuropsych to get it all of my chest. Later in the morning I sent a 'moan' email to my neuropsych telling her how I had been feeling the last few days & how I felt silly for being down & thinking that I might have an aura.
My neuropsych emailed me back & reassured me that it was OK to feel down as we all have down days/weeks, she reminded me to try not to be to hard on myself & to try to avoid over analysing things (I do sometimes over analyse things that happen lol). It's funny but I felt so much better after I emailed my neuropsych & got her reply.

I had a good sleep on Wednesday & have been fine since, so I think I just have to remind myself that it is OK to have bad days.

 

[Nakamova]

This is going to sound strange, but... I'm so glad you were feeling down, and not actually having an aura instead. And truly, I'm glad you're feeling better now that the cloud has lifted. Is your headache gone?

 

[qtowngirl]

Happy Friday CQ!
I'm with Nak... down days are good sometimes. SO glad to hear that's all it was and hope you're smiling already and the weekend is fun for you. You deserve it after all you've done to make yourself better.

 

[CQ:)]

This is going to sound strange, but... I'm so glad you were feeling down, and not actually having an aura instead. And truly, I'm glad you're feeling better now that the cloud has lifted. Is your headache gone?

Thanks Nak, what you said doesn't sound strange at all lol.
On Tuesday I was thinking to myself that I should be happy I didn't have an aura & I will still have days when I won't feel too well. I don't have any headaches Today & didn't get rid of the other headache until Tuesday morning.

Happy Friday CQ!
I'm with Nak... down days are good sometimes. SO glad to hear that's all it was and hope you're smiling already and the weekend is fun for you. You deserve it after all you've done to make yourself better.

Thanks Qtown.
I volunteered at the charity shop on Friday & was in a much better mood lol.
It's Saturday morning here so my plan is to spend the weekend working on the online course I'm doing at the moment. It has to all be done by 30th November which is plenty of time but I still have quite a few modules to complete.

 

[CQ:)]

Hi all,

I don't know if I ever mentioned before that for the last few years I have been doing some oncall casual work at a chiropractor. Usually it would just be a day or week every so often filling in for the other chiropractor assistant if she couldn't work.

Well it looks like I am going to be getting some regular ongoing work with the chiropractor. The Chiropractor called me last week to see if I would be able to help him out as it looks like his other Chiropractor Assistant has left (I am not sure why). I have been working at the Chiropractor every day since May 24th & I am going to be working there until I know any different. The Chiropractor & I spoke about eventually job sharing with someone which I am happy to do.

At this stage I am going to be working at the Chiropractor every day (Mon - Fri) for at less the next 2 -3 weeks until the Chiropractor finds someone to job share with me or I know any different. The Chiropractor is only open approx 23 - 26 hr pw as he works in shifts Mon & Thu he opens all day (8am -12pm then 3pm - 6pm), Tue, Wed & Frid are 3 hour shifts (either 9am - 12pm or 3pm -6pm) & he sometimes opens on Saturday mornings (8am - 11am). I am quite happy with these hours & I know I can handle them ok.

 

[Nakamova]

Hooray! Sounds perfect!

 

[ashmstng]

Thanks Buckeye~ For talking or posting about. LOL. I am still seizure free since May 22nd 2008. I was on 4 meds before the surgery and now on 1. I had surgery on my left temporal lobe. Any questions feel free to ask. I am not on this page much as I used to. I cans ay do alot of research and as many questions as possible. I hope you the best outcome CQ.

 

[CQ:)]

Thanks Buckeye~ For talking or posting about. LOL. I am still seizure free since May 22nd 2008.

Hi ashmstng,

That's great news about being 4 years seizure free :woot:.
I had my left front temporal lobe surgery in March last year & have been seizure free since the surgery.
I still have to go to the epilepsy clinic at the hospital for regular follow up appts with the neurologist & neuropsych. My last appt at the epilepsy clinic was in March for my 12 month review & I am due to go back to the epilepsy clinic in September for my 18 month review.

I was on 4 meds before the surgery and now on 1. I had surgery on my left temporal lobe.

How long did it take you to come of the 3 meds?
When I 1st started the process of seeing if I could have surgery I was on high doseages of 3 meds (Tegretol, Keppra & Neurontin) & was a walking zombie. When I had the Video EEG the epitiologist took me of Neurontin (at my request) & lowered the Keppra. I am still on Tegretol & Keppra but I am currently slowly being taken of the Tegretol .

I am not on this page much as I used to. I cans ay do alot of research and as many questions as possible.

:agree:
When my neurologist 1st suggested thinking about brain surgery & referred me to an epitiologist I did as much research as I can. Not only about the surgery itself but also the hospital I was going to have the surgery, the epitiologist who I was referred to & the neurosurgeon. I spoke to people on here as well as an Aussie epilepsy forum. There was 1 lady from the Aussie epilepsy forum who had her surgery in March 2010 at the same hospital that I had mine so she gave me some great information. I also met some people who had surgery & got some input from them.

 

[ashmstng]

CQ- I am happy to hear about your story. I was on Tegretol, Topamax, Keppra and Lyrica. Before the surgery they took me off Lyrica and Tegretol. Kept me on Topamax and Keppra. As the process of going back to the neuro for check ups. I kept asking which med they suggested me to stay on. They said Keppra over Topamax. Topamax made me not able to concentrate and I really didnt have much side effects with keppra. So they said since Keppra is a newer med and less side effects for me to stay on it. Which is fine with me. From 4 meds to 1 is good to me. After the healing process of the surgery and the check ups they started taking me off Topamax. I would say it was about 6 mths that they started to take me off. Its a process, I can tell you that. But well worth it in the end.

I hope you the best. I am happy to hear your story. Do they want you to stay on a med? And which med would they suggest you to stay on?

 

[CQ:)]

CQ- I hope you the best. I am happy to hear your story. Do they want you to stay on a med? And which med would they suggest you to stay on?

Thanks Ash,

The 1st time I met the epitiologist to discuss surgery & having the tests done he said if I was a candidate for surgery & the surgery was a success they wanted to eventually get me on 1 medication but said it would take time.

I went through an epilepsy program to have my surgery which is made up of a team of specialists (epitiologists, neurologists, neuropsychs, epilepsy nurse, neurosurgeon). I am part of the program for the 1st 2 years after surgery so have to go the hospitals epilepsy clinic for regular checkups with a neurologist & neuropsych. Once I hit the 2 year mark (next March) I have the choice of continuing to go to the epilepsy clinic at the hospital or going back to my own neurologist in my home town.

I had to wait until I was 12 months seizure free after my surgery before the neurologist discussed with me which med to reduce.
When I saw the neurologist in March we discussed reducing one of the meds & decided to very slowly reduce the Tegretol. The neurologist preferred to take me of the Tegretol because he found it had more long term side effects then the Keppra. He decreased my Tegretol from 400mg twice a day to 200mg twice a day & I had to stay on that dose for 6 months.
I only had some very mild side effects when I 1st lowered the Tegretol but no seizures or auras . I am due to go back to the epilepsy clinic on 10 September for my 18 month review so I am expecting my Tegretol will be lowered again. Of course I don't know how much the neurologist will reduce the Tegretol until I see him in September lol.

The specialists have always said I will be on one med for the rest of my life - most likely Keppra but eventually it will be a much lower dose then what I am on now. I am fine with that as I have never had any issues or bad side effects from the Tegretol or Keppra.

 

[CQ:)]

Hi all,

It's been a while since I've posted an update in here on how things are going.

I have been working at the Chiropractor as a Chiropractic Assistant (CA) for almost 3 months now. He still hasn't gotten anyone to job share with me yet so I'm still there every day. At 1st I would tell patients I was just filling in but I am now comfortable enough to say I am there permanently . At 1st the patients thought the other CA was on holidays but after about a month the patients figured out I'm probably there for good (especially the regulars who come in every week or fortnight) :roflmao:.
The chiropractor has taught me so much & as I have gotten more confident & better in different duties he has gradually taught me more .

Everything else is going really well & I'm only a month of being 18 months seizure free (but still aiming towards the 2 year seizure free mark) :rock:. I go back to the epilepsy clinic in September to see the Neurologist & Neuropsychologist for my 18 month follow up appt. I'm pretty sure the neurologist will reduce my Tegretol doseage more but of course I have to wait until I see him next month to find out what he will do lmao.

I'll post another update sometime in September after I been to the epilepsy clinic .

 

[Nakamova]

That's great CQ! How nice for you to have a new brain AND a new job. When you hit the two-year mark, you should get a new car...

 

[CQ:)]

When you hit the two-year mark, you should get a new car...

Can't see myself getting a car because I've never had a licence & have no interest in learning to drive fft:.
I'll have to think of something else to do when I reach the 2 year mark lol.
Maybe think about going on a holiday onder:.

 

[CQ:)]

Hi all,

I have been going well but lately I've been getting pretty stressed easily with some stuff going on at work. Usually my friends who pick me up from work or my Mum can tell when I am stressed by my moods so they listen to me moan about what is stressing me out. If I am still really stressed after a few days I will email my neuropsych & she will give me some advice which usually makes me feel a little better. Sometimes the Neuropsych might give me the same advice as my friends or family but I've found I need to hear the advice from people with different perspectives (family & friends who care, specialists who speak from a professional point of view) for the advice to sink into my head lol.

I love my job so I am trying to work on ways to control the stress & not get myself overstressed.

I go back to the epilepsy clinic next Monday for my 18 month follow up appt with the Neurologist & Neuropsych. My Neuropsych recently suggested to me that when I see her next week we can discuss in more detail about the issues that are stressing me out at work.

I have a feeling that when I see the Neurologist next week he is going to decrease my meds even more (most likely the Tegretol). I usually try not to worry about any side effects I have with med changes & I usually have different side effects each time. The side effects I had when the Neuro reduced the Tegretol in March were very mild.
I'm hoping that if I do have another med change I'll have very minor side effects again but now I'm working I do worry a little that I'll have side effects that will effect my work eg - I might get drowsy or dopey & make more mistakes.
I mentioned this to my Neuropsych & she was going to let the Neuro know so he can discuss this in more detail with him next week.

My boss knows all about my epilepsy, the surgery & how I have to go back to the clinic to see the specialists. I told him last week how I am expecting another med change & am not to sure what the side effects will be. He was fine with it & we agreed that we'll worry about the side effects when they happen.

I'll update everyone with how things go after I come back from the epilepsy clinic.

 

[Nakamova]

I've found I need to hear the advice from people with different perspectives (family & friends who care, specialists who speak from a professional point of view) for the advice to sink into my head lol.

So true!

Hope the appointment goes well. I'm rooting for your continued seizure-free success!

 

[CQ:)]

Hi all,

As I mentioned lately I have been getting really stressed lately with some issues at work. I get to the stage where I think I have the stress under control then something happens & I get myself all stressed again.

On Saturday I had an episode which was similar to one of my old auras but this time it was very mild. I had a similar feeling to what I used to get with an aura & when I spoke to my Mum I was getting all confused & tongue tied. All up the whole thing lasted only a minute. I wasn't to concerned about what happened on Saturday but decided it was best to tell the Neurologist when I saw him.

I went to the epilepsy clinic Yesterday, I caught up with my epilepsy nurse to have a chat with her before I saw my Neurologist & Neuropsych. The epilepsy nurse, Neurologist & Neuropsych were all happy that I am still seizure free but they were also concerned about the stress I'm having at work as it looks like it is impacting on my health.
They all think the issue I had on Saturday wasn't an aura but more to do with the stress I'm having lately & my body telling me its under too much stress.

When I saw the neuropsych Yesterday I was in with her for an hour mainly talking about the stress I'm having lol. Because I have a lot of stress happening at the moment my Neurologist has decided it would be better to keep my medication at the same dosage for now which I'm fine with. The Neurologist wants to see me in another 6 months so I go back to the clinic in March which will be the 2 year mark .

I have had family, friends & my Neuropsych all suggest to me that maybe I should keep an eye out for another job because they are all concerned that with the job I'm in I will get more stressed & eventually have an aura or seizure.
I did a lot of thinking on the drive home last night & have decided that maybe it is better if I do try to find another job. As much as I love my job my boss has a extremely pedantic personality & I know he will never change as that is his who he is.

Recently I got a funny tshirt which says "I survived bran surgery & all I got was this lousy shirt". I wore that shirt to the epilepsy clinic Yesterday but had a denim jacket on so you couldn't see all the writing.
I did show the shirt to the epilepsy nurse & neurologist & they both thought it was great :roflmao:. I did forget to show it to my neuropsych though.

 

[qtowngirl]

If I go through with it I want to get that shirt. That is awesome.

Sorry to hear about your whatever it was hun, hope so much that it wasn't a partial, and yes definately if there's any stress that causes an episode that even feels like a type of seizure, kick that job in the ass!!

 

[CQ:)]

If I go through with it I want to get that shirt. That is awesome.

Sorry to hear about your whatever it was hun, hope so much that it wasn't a partial, and yes definately if there's any stress that causes an episode that even feels like a type of seizure, kick that job in the ass!!

Thanks qtown.

I am going to stay at my job for now but still keep an eye out for something else. The Neuro is pretty certain that it wasn't a seizure but I think he & the neuropsych are concerned that if I continue getting stressed I'll have more of these little 'episodes'. Saturday was the 1st time I had anything like that happen, I said to the epilepsy nurse that even if it was a mini aura I can't complain because I managed to go 18 months without anything.

As for the shirt when my Neuro saw it he said that is so cool, glad you wore that today lol. If you go by the date (10th) Yesterday was my 18 month anniversary since surgery.

 

[qtowngirl]

Well it's still the 10th here so... :woot: :woot: :woot:

 

[Nakamova]

Recently I got a funny tshirt which says "I survived bran surgery & all I got was this lousy shirt". I wore that shirt to the epilepsy clinic Yesterday but had a denim jacket on so you couldn't see all the writing.
I did show the shirt to the epilepsy nurse & neurologist & they both thought it was great . I did forget to show it to my neuropsych though.

When I saw the neuropsych I wore a pair of earrings that said "Left Brain" and Right Brain". I deliberately put them in the opposite ears. I don't think she noticed, though...

Congrats CQ on the 18 month anniversary. That's awesome. Sounds like you're doing everything right to take care of your health, including binge proactive about stress. I hope you find a better work environment soon.