New girl

[ellie]

Hi everyone. This is my first time on a forum. My name is Ellie and I live in london, England. I first started having seizures when I was 19, I am now 27. There was no apparent reason for them starting other than bad luck I think. When I have a seizure I dont normally have a warning and I always go unconscious. The reason I have decided to join this forum now is because I was seizure free for 2 years up until last tuesday when I had one out of the blue. I hadnt been drinking and Id had loads of sleep etc. It really bothered me this time because it had been so long and there was no trigger. Id almost forgot I even had epilepsy apart from taking pills twice a day. Ive got to stop driving again for a year and I feel like my independance has been taken away again. luckily I have an amazing fiance who is now my personal taxi/cab but he is so scared it will happen again when im on my own. Even while typing this he has shouted out from the other room to see if im feeling ok, twice. The doctors increased my lamotrigine to 450mg from 400mg. I just wondered if it is common to have a seizure after being free for so long? And also I get twitches in my hands, arms and head sometimes and find it hard to answer a question when I feel like this. This always seems to happen when ive just got out of bed or im tired. Hope that made sense coz so hard to explain. Could this be a partial seizure? Sorry to have bored anyone reading this but I feel like I need some answers. Thanx for reading. lol. Ellie. xx

[RobinN]

Hi Ellie - I don't think we get bored easily here at this site.
We all come for support, a laugh now and again, and the awesome research we are doing collectively.

I can only imagine how frustrating your recent episode was. Is there any connection for you with your monthly cycle? What I have learned is there is nothing predictable about this disorder.

As far as your boyfriend is concerned...maybe you could wear a bell as a necklace, and he only needs to check on you when he hears it. Maybe if you ring it, it will scare the seizures away.

[brain]

Robin does have a point there, if you
are experiencing seizures before or close
to your menstrual cycle or during the
ovulation cycle - it's known as catamenial
epilepsy. And we have discussions on this
topic as well, and those hormones; the
Women's Issues.

Moreover, seizures can change as we age,
they can go away, they can increase, or
they can remain unchanged.

And no, it is not unusual for medication(s)
to be titrated up; but if you are experiencing
MORE seizures because the medication was
titrated up, then you need to consult with
you Doctor's office about this. However, if
you had been having this type of seizures,
but it has decreased, but you are having it
sporadically - medication(s) will not make
the seizures go away, it is not a "cure", but
there are some lucky folks out there where
the medications have controlled the seizures
entirely (lucky them!)...

Neurofeedback is another avenue to look into
but I know not if it is available in UK, but you
can check up with that with Epilepsy Action
in UK ... by clicking on the banner below
and more information and options for UK
will be available there ...

[ellie]

Thanks for replying. I dont think it was anything to do with my menstrual cycle as its never affected it before but never say never. My fiance and I found the bell necklace very funny. Theres loads on the christmas tree so they might come in handy he said. There was another question I was going to ask but I forgot. I dont no if its due to the meds or the epilepsy but often I cant think of a word I need to say or forget what im talking about. Concentration span is terrible to. Anyone have same experiences?
So many things I need answering but they dont come to me all at once so I will probably be posting quite a lot. So nice to speak to others in my situation instead of on internet sites and neurologists dont tell u anything apart from the basics. Thanx. xx

[RobinN]

Try to catch up with me on the number of posts

Please when considering catamenial seizures, think of the whole month and how it affects the body. The only real way to see if there is a connection is to keep a journal, and also keep records as to days of ovulation... etc. You can also keep your temp if you are really interested in knowing. We did this for Rebecca and found out she was not ovulating, so Progesterone was rather nonexistent. She has used a bio-identical progesterone each month except for the last one, and she made it through the sensitive time without any negative episodes. Estrogen excites the brain, progesterone calms it FYI.

A journal is really important, for many reasons. I suggest you begin even if you can't think of any connections yet.

[Meetz1064]

how do you do, Ellie?

Trying to catch up to Robin? LOLOL Very funny. She and Mr B are in a tight race for the most posts, and he's only winning by a smidgen (about a hundred).

Robin's right about the journal, though. OK, it's a pain in the ARSE. Don't disagree there. But, it will help. Catamenial epilepsy usuallly shows up at puberty, but not always. So, if your hormones are shifting--ARE YOU PREGNANT?--then it's a possibility.

But use that journal to track everything. Bedtime, video games, computer, foods, monthly cycle......you think of something, write it down. Even write down your meds, the doses and times taken.

After a while, something will show up, and help you and your doctors. For some people, it's something as simple as a food that is a trigger......

(Thanks for reminding me Robin of which way it is that the Estrogen and Progesterone work......I keep turning them around.)

Anyway, stick around. We've got lots of nooks and crannies around here to be checked out. Buckeye should be around soon with his yummy coffee--or maybe it will be Epileric to bring it this time....

Take care,

Meetz

[ellie]

Thanx for all that info. Ive probably learnt more in the last few hours on this forum than i have in 8 years from doctors. Im not pregnant by the way although I would love to have a child soon. Off to bed now as its 11.20pm. nice to speak to you all. lol xx

[Bernard]

Hi Ellie, welcome to the forum.

I don't know how common it is in terms of percentages of the overall epilepsy population that manages to go seizure free for a years, but I see reports of people having reoccurances years later all the time in this and other forums, so it's not a unique situation by any means.

I'll leave you with a couple references to other discussion threads on this forum which I think you might find interesting:

Proactive Prescription for Epilepsy

Stopping drugs when seizures have been controlled for years

[RobinN]

After a while, something will show up, and help you and your doctors. For some people, it's something as simple as a food that is a trigger......

(Thanks for reminding me Robin of which way it is that the Estrogen and Progesterone work......I keep turning them around.)

Take care,

Meetz

Remember also, there are estrogen rich foods, which can also throw off the balance. Look at Dogtorj's site, on the left sidebar he has Estrogens in Foods.

[Meetz1064]

Gonna go check out the list again.....and send it to my hard drive. OY.

[skillefer]

Hi ellie! Welcome to CWE. As you can see, a friendly group. I understand about SO's being worried. My hubby does the same thing. And my in-laws keep a constant watch on me. (Right now I'm pregnant *shrug* so I understand their concern. ) As for the sudden onset of seizures.....I was seizure free for over 10 years. Then, my meds quit working for me. So yeah, it can happen. And yes, your body can become acclimated to a medication, and the med will no longer work. I'm now in the process of being put on a different med. Also, have you gained weight recently? My neurologist told me, the more you weigh, the more meds you'll need. Had you been sick before you had the seizure? For some people, having a fever, or the flu can trigger seizures. Hope this helps.

[majormana]

welcome nice to meet you

[paradise survivor]

Welcome Ellie! I too have seizures and have also gone thru periods of time where nothing happened...I figured it was a miracle...then it would hit like a freight train. I hate reality checks. I did enjoy the 'bell' suggestion, my hubby got me a cell phone. I have it with me all the time...well, most of the time, ok sometimes I forget it and boy does he sound the alarm!! He has been known to call my son or friends to find out if I am upright or not, followed by the whole lecture about how cell phones are mobile and how I scared him to death and 10 people were in their cars heading for my house to check on me. (sometime he goes for the dramatic to make a point) God love him, he means well. It can't be easy for those who care for us and about us-it must be love