Newly Diagnosed

[datona]

Hello there
I'm new to this site and to epilepsy
I'm a 31yo female from the UK and have been suffering with "twitches" for many years, I think I first started getting them in my teens. If I got them, they only manifested themselves until about 1pm and only if I was really tired, ill or hungover. My friends all know about them and it just became a bit of running joke as one of those things that I did when I'd had a heavy night (I've inadvertently thrown my breakfast across the room or a drink over someone before lol!).
Anyways, I slipped on a wet floor in November 2012 and cracked my head on the corner of a sink but all seemed fine, just a nasty bump. Now, I am currently 7 months into a 24 month round the world trip and I was found unconscious in India on 31/03/13 but no-one knew what had happened, least of all me! This had never happened to me before. I had a big bump on the back of my head and both elbows were bruised, presumably when I passed out & fell back. When my partner found me, he asked me a bunch of questions such as "who am I?" "where are we?" etc etc, I had no idea. A doctor was called but he said I had sunstroke, showed me how to clean my ears properly and, well...was pretty useless lol
Then on 27/06/13, whilst in Kuala Lumpur, my partner woke up to witness me having a seizure in bed which lasted for 5 minutes. I had bitten my tongue quite badly :s It then took 45 minutes for me to get my memory back. He was very shaken up & took me to hospital.
After spending 8 hours trying to mediate between the hospital admin dept & my travel insurers Asia dept, I finally got admitted, pheeeew! I was sent straight in for an MRI, EEG & full blood tests.
Blood tests & MRI were clear but my EEG showed evidence of epilepsy which the doctor believes was caused by a head trauma I had in November 2012.
The doctor prescribed me 6 weeks worth of Lamictal (25mg twice a day for the first week, then 50mg twice a day thereafter) with advice to visit a doctor when I get to Australia next month to get another prescription.
I'm a little lost because there is lots to take in and I'm not in the position to get care/advice from one dedicated health professional. I'm not sure what type of epilepsy I've got or what type of seizure I had. I feel apprehensive about taking medication everyday, I don't even take the pill cos I don't like the idea of messing with my hormones, so any help/advice is greatly appreciated. Thanks in advance

 

[jenbayly17]

Datona
I am sorry this had to start for you when you are traveling. It is great that you started seeking information though. Take a look at this link and also through some other posts on this site.
http://epilepsytalk.com/2010/07/22/head-injuries-and-seizures/
I have complex partial seizures but there are many different types of seizures and for some of the seizures I have had I have had bumps and stitches even from hitting my head while I fall from a standing position sometimes. I started with seizures from my family background but I have probably contributed to the madness by the injuries I have had. I haven't taken the medicine you are starting but have heard good things about it from people on this site. Just keep a journal of symptoms and feelings you have so you can have a doctor look it over especially for when you are traveling and will need to see different doctors. I would also suggest that you read about auras. This way you can learn what aura you have before your seizure starts. I get wave of chills and then get very warm before mine happen. Some auras are not followed by a seizure but at least if you get to know yours you may have time to get yourself to a safer spot to not injure yourself or alert someone that you need help. Keep us posted and don't be afraid to ask questions.

 

[datona]

Thanks for your lovely reply Jen & for sharing your history with me. It makes me feel easier knowing I'm not on my own so far from home although my boyfriend was great when it happened, I think I scare him a bit when I try to talk about it, he thinks that as the seizures were 3 months apart that I only have a mild case of epilepsy, is this right? I am quite inquisitive by nature & really get stuck into researching things so you may imagine that I'm making myself pretty busy at the moment! From this research & from what he told me he saw, I think I have tonic clonic seizures but I don't recall any particular aura feelings/symptoms. The 1st time I was awake and walking back from the bathroom, the 2nd time I had been up to use the bathroom but had made it back to bed, but a visit to the bathroom happens every morning so isn't unusual behaviour for me. So, there isn't anything I recall that felt different but I guess with the diagnosis and your advice to keep a journal, I will be more aware of my symptoms & feelings
Can you clarify whether you take any medication or are you not taking any medication, and if not what your reasons for not taking any are? Thank you

 

[DEEMO :)]

Hi Datona

I'm just replying about when you said

"I feel apprehensive about taking medication everyday, I don't even take the pill cos don't like the idea of messing with my hormones, so any help/advice is greatly appreciated. Thanks in advance"

I went through a stage where I didn't want to take the medication for the epilepsy. I have tried 5 medications and I have just started the 6th. I know the meds really suck but they do decrease my seizures even though I still have 1 a month. I am a bit excited about starting the new epilepsy med and fingers crossed it works.

It really sucked getting diagnosed with seizures. I lost a week of memory from my last one. They are the most horrible feeling and its strange waking up in an ambulance.

I am being taken off lamictal now but its not a bad med it just doesn't work well enough for me, The only side effects I had where loss of coordination and double vision, that goes after a few days. Wish I was staying on it but they want me on med number 6
Your on a very low dose of lamictal. I am currently on 200mg twice a day with 500mg twice a day of keppra and 1 milligram of paxam and starting trileptal at 750mg a day. I hope the lower dose is you perfect medication

Good luck with your holiday I am a little jealous. I'm spending my school holidays marking papers. Have fun. Hope you seizures become controlled.

Good luck with it all. Hope your a lucky one amd get a quick diagnosis with quick control

 

[datona]

Wow, that seems like a lot of medication and you lost a week of memory?! That's...well, I don't know what to say, I'm sorry, that must really suck. I really hope your next med is the one for you, my fingers are crossed for ya x
I guess I'm lucky so far, my memory all came back to me within 45 minutes but I was so confused when my boyfriend said we were in Kuala Lumpur...I was like "What?! No we're not! Really? How the hell did we get here!?" it seems funny talking about it now lol!
As for a holiday, I'll have you know its hard work travelling, haha, seriously, it can be! But Bali next week should be a tonic for the hours and days spent sweating on buses & trains with chickens in my face and a tonne of backpack on my lap, lol, but its what I've dreamt of since I was a kid so am determined to try my darndest to keep it going even though I feel like running home to my family & friends for some hugs at the mo'
Thanks for the support Deemo, really appreciate it and good luck with those papers (just give them all an A and go out to play )

 

[Nakamova]

Hi datona, welcome to CWE!

When it comes to medication, I understand your reluctance -- I was the same way at first. (Now I take 175mg lamictal a day to control my seizures). Because the meds are very powerful, make sure to take them consistently until you get a chance to see a neurologist -- stopping them suddenly, or missing a dose can actually trigger a seizure, even in someone who's never had one before.

The bump on the head may have caused the seizures, but if you've been having twitches for years before that, then that may be a factor -- you may already have had a lowered seizure threshold. Twitches can be a symptom of what are called "myoclonic seizures". You can read about them here: http://www.epilepsyfoundation.org/aboutepilepsy/seizures/genconvulsive/myoclonicseizures.cfm

Sometimes untreated seizures (including myoclonic ones) can progress -- they can start happening more frequently, they can last longer, or they can change into other kinds of seizures featuring loss of consciousness. For this reason, you should be very careful -- don't assume that because your seizures occurred 3 months apart that your epilepsy is "mild". The more seizures you have, the more likely your brain will "get in the habit" of seizing, and the more likely it is that you'll have more seizures in the future. If you had a positive EEG, that means you are still vulnerable.

So it's important to take both the seizures and the medications seriously. Make a point of seeing the doc in Australia, at the very least to get informed about what your options are. In the meantime, make a note of everything that's happened, including the twitches and any other unusual symptoms you may have experienced. Aim for healthy moderation in your diet and sleep habits. I hope you never have another seizure again, and continue to be happy and healthy as you travel the world.

Best,
Nakamova

 

[jenbayly17]

Datona
I am sorry I didn't respond quicker but I see you have gotten some great advice from several others. I am medicated to answer your question. I take levetiracetam and gabapentin. I have tried other meds and have been pretty lucky overall. I have been on meds now for 20 years. I have had to switch meds but it has always been better controlled with meds. There are a few times I forgot meds but it has been pretty rare since I end up having seizures if I miss doses or the worst time to miss is when my body was exhausted or when I would get sick. I for a while thought my epilepsy was "mild" because I had a med that controlled my seizure so well that I would go years at a time without seizures. But eventually the side effects for the medicine became too much to handle (this was on tegretol xr) which had worked great until it started to lower my sodium level so much that I had two hospital visits where they had to get my level back up by keeping me overnight on an IV. I know it can be overwhelming to hear others experiences but it is a lot better to be inquisitive and research these things so you know how to explain to these seperate doctor's that you are seeing exactly what you are having trouble with. Good luck and keep us posted.:hugs:

 

[DEEMO :)]

Just a quick note

Just like Nakamova said epilepsy can progress and get worse. Mine where just simple partials and complex partials. They have now progressed to full tonic clonic seizures due to medication not working. Its way better to try them quick and get the right one. the worse scenario is surgery.

Have fun on your holiday

 

[datona]

Thanks for the advice Jen, Deemo & Nakamova. I guess it would be easy to bury my head in the sand and pretend this isn't happening as the seizures have happened twice & been 3 months apart, so I really appreciate your advice to take control of this situation. Especially as my support network of family & friends is severely limited to just my partner atm (I don't return to the UK for at least a year & know how much they worry about me without knowing I have epilepsy so this will probably send my mum into meltdown for the whole time away lol!). My partner is finding it difficult to talk with me about this as he feels "responsible" because he has a tendency to be...for want of a better word, melancholic. Whether that is true or not I think only positive things can come out of this & we can start to take control of our lives together and as individuals (me with my epilepsy & him with his "melancholic tendencies").
I have been in touch with epilepsyact.org.au and a lady there confirmed she will be able to help me find a specialist, among other information, upon my arrival in Oz.
I'll keep you posted & thanks again!