Help. PLEASE.

Replies

By loopy

Re: Help. PLEASE.
Sun 13 Apr 2008 22:14

hi lydia,
i wish that i could help you more but i cant. I am sending you all my love and support and hope that you can get the help that you both so desperately need.
sorry i cant be of any more help but it sometimes helps to know that other people are thinking of you.
all my love,
lisa xxx

By ann31bel

Re: Help. PLEASE.
Sun 13 Apr 2008 23:29

Hi Lydia.

It was good talking to you tonight in the chat room. I really feel for you and your parner it is no fun living with epilepsy, my son has been having seizures since he was 4 months old he is now 14.

I really think things need reasessing especially his medication, i have always been told that if a drug does not help with in a year then it is not going to help at all. There is so many different meds out there and i know it is trial and error to try and find the right ones! Kieran has been on 14 different meds with little help. He is now on a trail for the VNS vagal nerve stimulator which he had fitted back in sept. It is helping him slightly he is more alert and happy but seizures are the same.

If i were you i would go back to your doctor and explain the situation take your partner with you and dont leave until you get some help the doctor should beable to get you into see a consultant and they to can adjust medication if need be.
If the seizures are getting worst and in clusters you could alway ring the on call doctor at night and explain to them to the more you get involved the better.

It is no fun having little sleep because that does not help with seizures either, if Kieran is over tired he has more!!

I hope this help abit and sorry if i have been ranting on but i do feel for you both.

Take care and look forward to talking to you qagain very soon. xXxXx

By Greywolf

Re: Help. PLEASE.
Mon 14 Apr 2008 07:34

Thanks for last night. Talkin to you all in the chat room really helped ease some of the tension.

Thankfully, at 23:30 my OH fell asleep and slept till 6:30. Head still hurts & still shakin so we're going to go doc's and harass her.

Thanks for all the help and advice.

By coffee

Re: Help. PLEASE.
Mon 14 Apr 2008 10:38

Hi Greywolf I am not surprised you and your hubby are shatted and a little surprised you are waiting so long but as mentioned you need to get the meds sorted not only are ther different meds out there but also E comes in different forms although some might be almost the same if a med given for a spefic E if its slightly different it can make the person worse and that sounds maybe what happened. you need help fast so I am sending you an oganization that willl Ihelp Epilepsy Action
www.epilespy.org.uk
9am to 4.30pm Monday to Thursday and
9am to 4 pm on Fridays (all UK times).

email: helpline@epilepsy.org.uk

post (UK residents only): Freepost LS0995, Leeds, LS19 7YY
post (international): New Anstey House, Gate Way Drive, Yeadon, Leeds LS19 7XY, UNITED KINGDOM

They also have an online forum only for those who have Epilepsy and their carers and the people on there are brill as there are many forms of Epilepsy and effects which I have found out myself .
I have had E most of my life and I am 53 so I understand the stress you are going though
Epilim and Tegretol are what I take at first I had grand mals but now I just have consious giddy turns and they have helped me to the point that now I take them every other day so they control my siezures.well.
So Greywolf don't stay and suffer in silence get in touch you will be glad you did all the best coffee

I take are Epilim and Tegretol and they have helped me to the point that now I take them every other day so they control my siezures well.
I suggest you get in touch with Epilepsy Action who will be able to help you . Their web site is
www.epilespy.org.uk
They also have an online forum only for those who have Epilepsy and their carers and the people on there are brill as there are many forms of Epilepsy and effects which I have found out myself .
So Greywolf don't stay and suffer in silence get in touch you will be glad you

By coffee

Re: Help. PLEASE.
Mon 14 Apr 2008 10:52

SORRY i posted some of my reply twice something happened to the computor some words appeared twice also Greywolf I forgot to send you the phone number its freephone ( UK)
0808 800 5050
International
COFFEE

By Greywolf

Re: Help. PLEASE.
Mon 14 Apr 2008 16:36

Thanks for the info & advice. My OH ended up in hospital today and they have put him on CLOBAZAM for 4 days and sent him home. See own GP on thurs. Hope that something is sorted soon.

Thanks for the web address will definatly get on it.

By Greywolf

Re: Help. PLEASE.
Fri 18 Apr 2008 16:57

It's now friday and nearly a week since this episode started and with the help of the clobazam the seizures reduced slightly.
He has still had the shakes, mini convulsions, headaches and ants and today had a cluster of 5 big TC's and he is now sleeping.
I hope that this is going to be the end of the bad time and the begining of the better time (until it starts again lol.) I also hope to get some sleep tonight. I think that since tuesday morning I have had about 10 hours and I'm beat.

We are STILL waiting to hear from the nuero for an appointment at the E clinic.

By Greywolf

Re: Help. PLEASE.
Mon 21 Apr 2008 13:06

YIPPPPEEEEEEE We have finally got an appointment to see a neuro. But only after writing to the PCT complaints dept and threatening to go to our MP.

By EL

Re: Help. PLEASE.
Mon 21 Apr 2008 13:37

gud on yer u 2 brill news, sure i dont have to remind you to keep a diary of events if possible get video evidence, it carries a lot of clout and enables the docs to see all aspects of your/OH's problems rather than just going on what you say

By Greywolf

Re: Help. PLEASE.
Wed 30 Apr 2008 14:52

Saw neuro today and OH getting meds changed - now on TOPIRAMATE.
The down side to this is that with only 6 weeks to go before we could get a seizure alert dog - we now have to start again - 6 months before we can apply again and then another 6 months worth of diaries to fill in, so it's going to be at least another year before we get one. OH is now thinking of getting a dog of his own and training it himself Just hope it works out.