singer/ songwriter with epilepsy

[daniellabella]

hi guys

i just wanted to introduce myself im 25, i found out i had epilepsy when i gave birth to my son at 19 hes amazing by the way. i also found out i had a benign brain tumour so im not dying as yet ha.
since i found out i have bin on a bit of a world wind asking the doctors questions they cant really answer. I have been on all kinds of medications and recently had a test in the hospital where they kept me in hospital with probes on my head and filmed me for 5 days like in big brother.
i have absent seizures can be everyday and some time throw up and dont know where i am.

the tests revealed that the epilepsy does come from my tumour and they want to do an operation where i could go blind or die and i dont really know what to do. i hate taking medication but i hate it and want to stop it but they said i could die its a bit annoying to say the least, i feel that they make me a bit stupid and im forgetting my life.

on the up side im at university studying music god knows how im doing that but its loads of fun. my confidence went a lot over the past few years not that anybody new because im good at hiding things. but i can tell you that im back again doing what i love and nothing is going to stop me if i have a fit then the whole world can see me and i dont really care because this is apart of me and im away with the fairys anyway.
does anybody feel abit physic? i get a lot of de sar vu? ha cant spell random question.

i am here really to find answers and to help anybody that feels down. i have read some stories on here when friends have left people and that isnt the case in my life ive been lucky i guess. i dont really know anything really about epilepsy even tho i have got it and had it for 6 years now,

i just feel lucky to be alive and i know people say we are different and feel sorry for us but i feel sorry for them because really because i cant work in a dead end job that i hated anyway and have had the time out to figure out what i love doing which is singing everyday and who said you cant work from home ey?
i personally have seen the beauty of life through this and whats important which to me is LOVE for yourself, family and friends. there is a lot of loop holes created for us so we should enjoy it and use them to live life!
some things are a bummer like driving but hey theres always ur free bus pass and ring and ride can have a great chat with the oldies there the wisest. anyway always look on the bright side of life do do de do de do de doo! xx

 

[Bee91]

Hi Im Brandi Ive had Epilepsy for 5 years. Mine come from my temporal lobe. I know what you mean about tired of taking meds I take ove ten pills a day for various medical conditions and it sucks I know, but you have to make sure the benefits out weigh the side effects.

 

[travel bug]

Hi Daniellabella

Welcome to CWE!

First of all, may I say what an amazing attitude you have! It can be so difficult, yet so important to find things to be grateful for when things seem piled up against you. I need to take lessons from you

As for your tumor, I wasn't sure if you meant that your doctors said you might die if they perform surgery to relieve seizures, or if they said you might die without surgery because of pressure on your brain. I really don't mean to be morbid here, I have a tumor as well - low grade malignant, and like you, I'm not dying yet - and I know that tumors aren't an automatic death sentence, though any tumor, benign or malignant, is serious. Anyway, is it possible for you to get a second opinion?? You spell tumor with a "u" so I figure you are in the UK or Canada and I don't know how things work there. But if it's at all possible, try to get a second opinion from a major brain tumor center-someplace where they see bt's everyday. Neurosurgeons who deal exclusively with bt's are better able to decide how tricky or necessary surgery may or may not be.

Some major bt centers in the US are: Brigham & Women's Hospital and Massachusetts General both in Boston; the Universities of California at Los Angeles and at San Francisco; and Duke University in Durham North Carolina. Some bt centers will give second opinions without you having to go yourself, they just review your records and MRI images.

Take care and keep buying green bananas!:banana: They are learning new things all the time! I truly believe that soon bt's will be, if not curable, at least a manageable chronic condition.

 

[Endless]

Daniellabella,

Welcome to the forum! I like your name. It sounds like music when I say it out loud.

I'm sorry to hear about your tumor. What a tough choice. There are a bunch of people in here who have had surgery, I'm sure they will chime in on this soon.

In the meantime, make yourself comfortable and look around in here. The people are really nice and I've learned a lot from all of them.

 

[daniellabella]

thanks for your replies!

i have got a neurologist too he's nice, he says he doesnt want to operate because of the risks involved i have scans every 6 months he doesnt think it will grow i dont think but im not allowed to have anymore children because he said he thinks the pregnancy hormones either brought it on or made it grow.
its my epilepsy specialist wants to operate on it, to get rid of the epilepsy its confusing he thinks i will just have tunnel vision.
the thing is these dr's are just people doing a job they have to detach themselves from emotions.
what is a malignant tumor?
i think i might still come off my meds anyway theres to many cons x
theres no need to be sorry and thanks for welcoming me x

 

[Nakamova]

Hi daniellabella --

Interesting that your neuro thinks that pregnancy hormones brought on the tumor, since the same hormones (high estrogen primarily) often cause seizures in pregnant women.

You're right to be conservative about the surgery possibility -- it might be a huge success (and has been for many), but surgery also carries the risk of scarring and scarring... causes seizures.

If you do decide to come off your meds, let your doctor know, and goes as slowly as possible.

Oh yeah, and welcome to CWE!

Best,
Nakamova

 

[RanMan]

Daniellabella,

My name is Randy, I'm Canadian. Music runs in my family and starting from age 9.
I was playing drums and guitar with proffesional bands. Up until age 21 (1979) I was a singer/songwriter, music teacher. My only dream in life was to make a good living with my music. (I also developed Ulcerative Colitis at the same time, the Docs. say the two are connected)

Well, all that had to come to a stop. I was sitting at my desk at my P/T job when I had my first seizure. All I remember from that point on was waking up in the ambulance on the way to the hosp. After going through several tests and then seeing a neurologist, the tests showed that there was epileptic activity in my lower tempral lobe. He then persribed Dilantin and Pheonobarb (still on today) and the seizures were under control. I was even able to keep my drivers licence.

One major problem though, the pills were severely messing up my co-ordination. I walked like a drunk, slurred my speech, my own family was embarassed to be seen with me.

Since my co-ordination was so bad, I could no longer play guitar or drums and I had to give up teaching.

I was so depressed, I could no longer fulfill my dream, now what was I going to do.
I had to make a career change. I was putting in job applications all over but I had no other experience.

Finally I got hired on by the Federal Government as a courier and mail clerk. I worked my way up to Administraion Manager for the Unemployment Insurance Office for 21 years and then 9 years with Veterans Affairs.
My condition was getting worse with age, no seizures but the meds were blocking my learning ability so I couldn't take on extra duties.
As a result of this, my employer(The Government of Canada)
put me on medical retirement last year (I'm oly 48) but after my disability insurance runs out.

I had to learn to live with my disability and work around it.

Randy
--------------------------------------------------------------------------------
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.

275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day

 

[Endless]

Randy,

It's so good to see you in here! It's been a little while!

 

[daniellabella]

hey randy how are you today?
thats quite a story you must be a very strong person to deal with that.
are you married? any kids? hows your speach can you still sing? what is Ulcerative Colitis? can you not play guitar at all now?
if you can still sing then why dont you right down the chords and ask somebody to play them and you sing or just make up lyrics and melodies since your not working anymore sing about your experiences and feelings would you do that its never too late to fulfil your dreams? x

 

[dbrownpilot]

Hello Danielabella.
I am a musician. I had a temporal resection to remove an AVM in June and I haven't had a seizure since then. The drs told me that my seizures and memory loss would increase whether I had the surgery or not. I was afraid of all the possible side effects, but I'm glad I had it because at least the seizures stopped. When I woke up from surgery and they asked me to move my muscles to see if there was any paralysis, I played air keyboards and drums to make sure I still had the right coordination. I was playing for real within 5 days. My memory is still terrible, I have to read all the music I play, I can't remember anything once I look away, but I can play just fine. I can also improvise quite well, obviously that doesn't take memory. I am still teaching music and my students accept my memory loss just fine. Its better than standing on the podium staring at a score, knowing what the music should be, but not being able to do anything but speak garble. Anyway, I think staying positive is the right answer, and you seem to agree. I actually feel that we musicians have a great advantage in some respects. The rest of our world can be falling to pieces, but we still have the music, even though some of us can't perform anymore. No one can take away the emotions we experience from the music, and we have all the options in the world there. So hang in there. I still feel depressed some days, and some of my meds make me pretty sick, but nothing can take away who I am and what I love. Whenever it gets bad I can still get lost in the music. That's true for you as well.

 

[matchu]

come join us in the creative writing group

 

[Rae1889]

Hi daniella

malignant means cancerous

 

[travel bug]

Hi Daniellabella,

It's good to hear that your neuro thinks that your tumor won't grow any more. It's also good that he/she is cautious enough to do regular MRI's just to make sure.

But it sucks that doctors often treat patients like they are just case studies or illnesses rather than people. In some cases I think they are just protecting themselves from getting too attached. But I don't think they realize how important it is for patients to feel that their doctors care; they don't have to be our best friends, just human, and try to see things from the patient's point of view.

Keep up your wonderful positive attitude