Hello

[BarryIreland]

Hi,

My name is Barry and im from Ireland. Im 24 years old and iv had epilepsy for about 4 years.I take 150milgs of Lamictal and 5 miligrams of Lexapro daily.In the past i have suffered from 2 grand mal seizures and continually suffer from aura/petit mal's. The main reason i'v joined this forum is out of frustration. Noone seems to understand what its like and the medical system here is a joke. Im currently working as an English Language assistant in Valencia, Spain. Ive been suffering a lot the last few months and now that im back for xmas i decided to visit my gp. So as i say im so annoyed, ive just been to a doctor where it wouldve been more useful talking to an ape.Ive been having a lot of petit mals recently and up to now ive been on 125mg of lamictal and 5mg of lexapro.My medicine dosage has been changing a lot. Basically the doctor informed me that i should see a neurologist again.

The last time i saw one, he was useless and i felt awful paying 200 euros for 20 minutes for general conversation. My gp has told me today that it would be impossible to see a neurologist before i head back to spain on the 5th of jan., even if i was to go private it would take about 6 months to be seen! The irish health system is a complete joke and iv decided im changing gps and going to see a neurologist in spain which i can see in 5 days.

This sh*t has got me feeling really down and annoyed and im sick of being treated like this....Excuse me for my french but i guess the only people who understand what im going through are other people with epilepsy.... just so annoyed. I understand i have it easy compared to other sufferers but i still find this epilepsy crap highly depressive and scary... I dont know what im looking for really by joining this site...maybe comfort or i dont know......

 

[TempusFugit]

Barry... *hugs*. Firstly, welcome to CWE. You will find that the members on this forum are very supportive and will provide you with loads of advice. Just have a look around - or I am sure that you will get more responses to your post shortly.

I can completely empathise with how you feel frustrated. Let's face it, epilepsy isn't easy to live with especially when you get fobbed off by so called professionals. It must be even more difficult for you what with your living circumstances.

As for seeing a neurologist privately - I like in Kent, UK - I managed to see my neurologist initially in about four weeks. Now, all I have to do is call and I normally get an appointment within 2 weeks. I am lucky - should I have gone on the NHS I was probably looking at a waiting time of 6 months - not good when you are having to cope with the day to day living with epilepsy.

Hang in there Barry *hugs*

 

[Rae1889]

Aw Barry!
i know exactly how you feel. That is the reason I came here. Nobody around me understood what it was like to have seiures interrupt your life everyday. Nobody Understood my fiance when He had to watch me have tonic-clonics and then i wouldnt remember him after. it put alot of stress on our relation ship. But we pushed through it. Mostly due to this website.

I too am currently on 150 mg of Lamictal. But as of the 25th I will be at 200mg. it seems to be helping but at a higher dose, i think I'd be better controlled with my complex partials and auras as well.

From what I heard, the medical community in Spain is ranked as one of the most compassionate. As a really wise lady on this site once told me: Doctors do understand us, but in a cold proffessional way. We need the closeness and warmth of the people around us to understand. but there is no way they truly can unless they walk a mile in our shoes.

Don't be too discouraged. Most people just need to be educated. Even I did.

Blessed Be

Rae

 

[roo]

Hi Barry and welcome. I'm sorry for the frustrating predicament you are in at present. I think Tempus and Rae have pretty much said what I wanted to say (and more). I hope you can get some proper help soon -- sounds like Spain might be the best option for you with regard to a neuro appointment.

Hope you find some much needed help soon ((hugs))

roo

 

[RobinN]

Hi Barry - I have been frustrated as a caregiver, so I can only imagine how it must feel to be dealing with it. When you are trying to play the game with the doctors and medical community calling the shots, you will stay in the dark. They are pharma based and do not look outside the box.

What helped me and ultimately my daughter was to be proactive. What her doctors were telling me, did not make sense. I began Google searches daily to support my instincts and found a new direction to follow.

Please consider that you were seizure free for 20 yrs of your life. What you need to do is to get your body back to the health that kept you seizure free. Something tipped the boat, and now you are adding to the insult with drugs. For us they increased seizures. I have proof of this, in my journal/calendar that I keep. Once we began a more natural approach her seizures have decreased.

Seeing all the research, and info online regarding nutrition, health of the GI system, and neurotoxins, I began making changes in how we approached this awful disorder.
The quality of my daughters life has improved a lot. There still is much to learn, and much for her to take responsibility for. However it made a world of difference to see improvement which gave us HOPE.

I would suggest that you consider this approach.

 

[Meetz1064]

Hi, hello and

how do you do, Barry?? It's so very nice to "meet" you! Welcome to CWE! I'm Meetz, and I'm happy to be here to show you around, cheer you up, whatever the need may be. I'm in a jim-dandy mood at the moment.

I DO understand what you're feeling about E, though. It sucks a hill o'beans. I've had that stupid thing for 45 years now. BAH. But, I don't let it get in my way--I have too many things to do. I use a variety of things to attempt to control it--and it is very well controlled at the moment--including meds, relaxation techniques, diet and supplements. Journaling is good, too, and I also do that...I have a great list of things to put in it, if you'd like. Those things will help you and your doctor determine your possible triggers if you don't know what they are.

Feel free to check out the Kitchen and Library for tons of information, and the Padded Room is great for venting when you need to. There's lots to learn here, and tons of friends to make, so feel free to stick around. We'll be here for ya, no matter what.

Take care!

Meetz
:rock:

 

[BarryIreland]

Thanks

Hey guys,
I just want to thank all of you fort all your reply's and support. It really has comforted me to know that i'm not the only one going through this one. I really appreciate the advice and i know i'll be ok. Just taking it day by day.....

 

[Billyboyboo]

Berry, I have always wanted to visit Ireland

Welcome !!!

 

[BarryIreland]

Hey Meetz,
I'd really appreciate it if you could share some of these techniques with me.
Thanks
Barry

 

[Meetz1064]

Sorry for

my tardiness in answering, you Barry, but I've been doing a lot of baking, eating and dealing with company......I'm glad to sit down for a bit. :bigsmile:

I use a variety of things, and they're really quite simple. Exercise is one of MY relaxation techniques, and depending on the mood I'm in, decides which type of exercise I choose to do.

Quite often, I find myself stretching out on top of a large (lift you up off the ground so you can't touch it large) ball. I'll start on my back at first to warm up, and sort of "walk" the ball around under me, if that makes sense. Then, I flip over, and do some of the same facing down. It looks funny, I'm sure, almost like a half-baked spider when I'm on my stomach, but it feels good and relaxing to me mainly because I don't try for any muscle burn. I just let my body do it's own thing and the arms and legs stretch out gently.

I also have a habit of when I'm going to bed, and getting out of bed as well sitting down for any long length of time---stretching from the toes all the way up, one group of muscles/body parts at a time. It helps me move around better (when I'm getting up) and when I'm ready to go to sleep, I'm able to fall off to sleep more easily, mainly because my body is relaxed.

I do also use soothing CDs when I can find them...or classical music that I have on the radio/internet. I'll put that on at the same time that I'm stretching to go to sleep in bed, combined with the herbal tea and melatonin, and I'm OUT!

Some days, if I'm wound tight as a top because I'm stressed out, I'll go for a power walk first, then come back, take a hot shower, and do some yoga. When I power walk, I have to stretch first so my muscles don't cramp, but then I get going. Depending on the mood I'm in, I might go several miles. Usually it's only a half mile or so.

I do have a young friend who is quite capable of giving great massages. When she's here in town I always get one. I'm a lump of jelly afterwards... :bigmouth:

I do also do a few other things, that as a guy, you might not be interested in doing. But, for me, they're totally relaxing. I like to sew, cross-stitch, quilt and a little bit of crochet....although I do have a couple of male friends from my old job that crochet.

And finally, I pick up a good mystery book, and read. Sometimes I drink an herbal tea while I'm reading it. I get so involved in the book, that my body just chills out, and my muscles relax. Then, after a while, I'm tired of reading, my head is tired and I generally take a nap.


Hopefully this didn't overwhelm you too much. It's a lot, but I do a lot of different things........:bigmouth:

Take care!

Meetz
:rock:

Take care!

 

[Ruth]

Hi,

My name is Barry and im from Ireland. Im 24 years old and iv had epilepsy for about 4 years.I take 150milgs of Lamictal and 5 miligrams of Lexapro daily.In the past i have suffered from 2 grand mal seizures and continually suffer from aura/petit mal's. The main reason i'v joined this forum is out of frustration. No one seems to understand what its like

Hi Barry, I am glad to meet you. Believe me, we understand what you are going through. You will get a lot of help and support here.

This forum was made by Bernard out of love for his wife, Stacy. This love permeates through all of CWE.

 

[unclearthur]

Hello Barry,
we attend St Vincents (public) in Dublin and once you are in the process you can get seen fairly quickly and regularly. On occasion, I have had to call the hospital for advice and they have always returned my calls same day and brought forward the appointment and/or adjusted the medication over the phone. Very good neurologists in that particular clinic. As the others said, try and identify possible triggers or causes of the seizures and keep a diary.Don't give up or despair and keep the faith.
UncleArthur