Out for dinner and something odd happened?

[EllyPaddington]

So I have been almost pre diagnosed with Juvenile Myoclonic epilepsy and my neurologist is in the process of getting an EEG but he said he is sure that it is what I have got.

I am on AED's and am taking the dosage up tomorrow, although for the moment they do seem to be helping a little because my seizure's aren't as bad. I have the Myoclonic arm jerks and also Absence seizures.

We are seeing the neurologist in a few weeks because he wanted us back early for some reason, but last night we went out for a birthday dinner for my granny, and during the night about 3 times my arms, head, torso, pretty much my whole body just sort of collapsed...

I couldn't pick my head up till about a few seconds later and was fully aware of it and what was going on. Luckily my mum was there and she held me up otherwise I would have been on the floor.

For a while I have noticed, even before I went to hospital, that every so often one part of my body would just 'give way' like an arm or a leg but never my whole body or a very large area of it.

My arms do always feel like they can't hold me up and have done for some time now, but I always put that down to something else like low blood sugar or something like that.

Yesterday my mum even said I had an absence seizure in the middle of the Sainsburys car park road, and now she doesn't really want me to go anywhere on my own in case, but I can't keep having someone constantly with me, especially when college starts again.

My neurologist is away for two weeks which is why he had to see me at such short notice beforehand, and he is lovely, but should I call the neurology department of my hospital and ask them what to do?

Also, what can I do about the absences and someone always wanting to be around?

 

[Sandie]

Why do you have a problem with someone always wanting to be around? I think if I were in your shoes, I would be thankful to have someone to keep their eye on me. Your epilepsy is definitely not under control yet and your mum is very wise in her thinking. Just be patient. I know that this is all a bit scary for you especially as you feel you are losing your independence. Once your medication is sorted out and your seizures settle down you will find that you won't feel quite so frustrated with everyone. Let people be there for you right now because whether you accept it or not you really do need a little supervision. Not for ever just for now x

 

[EllyPaddington]

I guess it has always stemmed from the fact that I have always wanted to live an independent life, and you're right, right now I am just frustrated. I am not getting anywhere with talking to a neurologist about these new seizures because the neurology department told me to see my doctor who will most likely tell me to ring neurology.

Right now it's stressful, I feel like I'm going in circles! Thank you for answering, means a lot xx

 

[Claire7]

Although I only had people around me to drive me everywhere and they didnt necessarily have to be there, it could be frustrating at times. I know its hard but I tried to focus on the future. It's not forever and now I am driving again, I appreciate my independance and my life so much more.
The other thing I have learnt is the people who care. Some of my family and friends just kind of abandoned me and 2 (so called friends) even drove past me while I was walking the 3 miles back home with my 4 year old in torrential rain!!!
My husbands parents who live over an hour away were driving down about 4 days a week to help me and some friends were constantly ringing/texting to see if I needed anything. It makes you realise who cares and loves you and I will never take those people for granted.
Just be patient. Hopefully this is just a blip in your life and if you follow the doctors advice and take what help you can get, it should make the process to some sort of normality at lot easier.
Take care

 

[EllyPaddington]

Oh my goodness, that's awful that people would just leave you like that!! Reading this has actually made me realise how many people really do care, I guess it's just the whole waiting for everything to settle itself down with the meds thing.

The meds have actually started to work on the arm jerks which is good, now they aren't as bad as they were before I saw the neurologist, and the absences even though they happen a lot are quite short, as I am told.

It's now just this random body limping that I need to get sorted. I think it is just the whole idea that it is new, and I did an in depth study on epilepsy a while ago for a piece of college work so I know what happens that gets to me.

My family really are supportive and reading all this has made me realise how lucky I am to have them there. It really is the whole waiting game, I'm one of those people who can get very impatient at times! I'm just not looking forward to college next week, teenagers these days can be very cruel

 

[Claire7]

So can adults! My own sister has never asked about what happened to me. She doesn't care. Also, one mum at the school my kids go to hasn't spoken to me since it happened. We were really close before and spent a lot of time together and now she just ignores me! What I find weird though is that her mother in law has severe uncontrolled epilepsy so you would think she would be the most understanding!

 

[EllyPaddington]

Oh my goodness!!! I go to the sort of college where people will think they can catch epilepsy by just touching me, but I've developed a thick skin over the years due to countless bullying. I think it is awful how people just ignore others when they are diagnosed with something! I was shocked in my class that someone thought they could catch epilepsy in my college class once, especially as we study health care and she wants to be a nurse!!!

 

[jyearta]

I'm sorry to hear what you are going through.
Having E. is life changing somewhat, like for any condition there are good days and bad days. it might take trying several meds. or combo to find what will give the best seizure control while at the same time you have a quality of life.

I'm on my 8 meds. combo and I do have break through seizures, but I'm able to dr. and go about my life ...for the most part.

Do you keep a diary? Keep track of your seizures, time, how long they last and any triggers you notice. Triggers can be anything from lack of sleep, stress, infections/flu, not eating the things your body is needing. There are many more and just like with meds. we all react diff. to the diff. meds.

Don't let this let you down (easy for me to say I've had E. all my life, I'm 61 now.