Hello- can anyone tell me that it will be ok?

[berrington]

Hello, Sorry if this is rambling, but I wanted to share my experiences with someone that may have had the same or even know what I say is even possible or if I am just mad!

I have just been told that I have Temporal Lobe Epilepsy officially after 20 years of funny turns, that have turned out to have been simple partial seizures all along. I have lived with rushing noises, sudden beating drums in my ears that get louder, physic visions, where I know certain things will happen and then they do!, immense sudden fear and nausea and then suddenly it stops and I am totally fine and feel really good, (although more dazed and tired afterwards as the years have progressed). I just thought that this was normal and everyone else did this too. I never really knew about epilepsy 20 years ago and noises in your head were always seen in the media as not good news! I kept quiet about it to be honest. I am an artist and always wanted to be, so I just thought it was part of being creative.

It was only when 2 years ago I found myself covered in blood on the floor in my studio and realised that I must of had some sort of stronger episode. I could not remember my name, had bitten my tongue, and had lost about an hour. These have happened more frequently since then and I have had about 8 in total as well as lots of the shorter ones. I also get just pulses and clicking noises, like an old style cassette tape turning over, does anyone else get this? Sorry this is turning into an essay, but this is the first time I have ever written on a forum or about my epilepsy.

I have been prescribed Lamotrigine and Clobazam. I have been taking this for 5 days, so still early days, but I am getting the pulses and have had a few of the simple partials but only the noises. Is anyone else on this combination of drugs and had the same effects? Also could someone tell me the truth if it is ok to drink a few beers with TLE? And will I be able to really drive again? I do hope someone has the patience to read all this and I can finally find some reassurance and it will all be ok in the end. Thankyou Berrington

 

[Nakamova]

Hi berrington, welcome to CWE!

It will be ok.

I can't promise you that you will achieve complete seizure control. I can't promise you that you can have a few beers. I can't promise you that you will be able to drive again. I can't even promise you that it will be ok all of the time. But it will be ok. Making it ok -- coping with epilepsy -- involves finding ways to minimize epilepsy's effects on your life and maximize all the things that make you feel good. You'll find that CWE members have a lot to offer along those lines: Advice and empathy and coping strategies. And hugs.

I don't have TLE, just tonic-clonics (I've had about 20). I don't get "pulses and clicks" -- but I know others have mentioned them. I am on Lamotrigine, and I have seizure control with relatively tolerable side effects. It's a bit early to gauge how you will feel on the Lamotrigine or the Clobazam, since it can take a while for the brain to adjust at each incremental dosage. And usually the ramp up for the Lamotrigine is very slow (if yours isn't, it should be!). For me, certain side effects that I had in the first few months went away, while others have hung around.

Because everyone reacts differently, there's no way to predict what your particular response will be. You can search for what others have posted about specific meds (or other topics) using the "search" tab at the top. For Lamotrigine you might want to look under "Lamictal" as well.

When it comes to alcohol and AEDs it's a good idea to play it safe. For some folks alcohol is no problem; for others it's a recipe for disaster. If you're feeling pretty stable, you could try having half a beer with meal and see how you feel. I'm able to drink in moderation without any issues, so it can happen.

As for driving, that depends in part on the driving laws in Gloucestershire. In the U.S. it varies from state to state, but in general the requirements involve a seizure-free interval of 6-months to a year before being okayed to drive.

I hope you feel free to explore all the forums here, and keep sharing and posting questions as needed. It's great to have you, and I hope we can help.

Best,
Nakamova

 

[Ash]

Im quite new too epilepsy too, and I also find myself asking if its gonna be ok. Historically i loved the odd pint or 6 but ive had to cut it down somewhat after the diagnosise. But I have the odd evening where i have a couple of pints and they dont cause me any problems. The meds im taking are controlling the seizures, still have lots of deja vu and strange feelings but no major seizures since i started the meds, so, all in all I think it could be a lot worse for me.

Stay positive, a few months ago I thought my life was completly screwed but there is light at the end of the tunnel.

 

[mel239]

Hi-I have left tle and for years thought everyone had those weird things too.I have cmplex and simple partials and was diagnosed 3 yrs ago am now on trileptal and zonergran and seems to do the trick so far.I never had the click noises but I have had voices and smells and now am down to just random visual hallucinations that dont even bother me.Its all trial and error and was a long and bitter road for me and as my psychiatrist put it last month,I am disillusioned if I think I will ever have a normal life.But--life is what you make it and trust me--I have been thru the mill as a lot of people on here have and we all have diff stories--but anyway-welcome

 

[valeriedl]

Finding out that you have epilepsy is new to you. Since you just started taking meds you need to find out how your body is going to react to them and if they are going to help with the seizures. Sometimes the first meds and dosages that the dr puts you on aren't going to be the ones that might work for you and control your seizures.

I live in PA, and here you have to go 6 months without having a seizure. Other months are longer I know though.

As far as drinking, I would wait a while for that first drink because you just started taking the meds. I've had epilepsy for a little over 8 years now. I find it ok if I have a drink every so often, but I don't get drunk when I do drink.

It's just something that your going to have to be paitent about and find out what goes on.

 

[berrington]

Thank you

Hi thank you for your kind replies. Very helpful. I thought I would update you on my progress in case it helped others. I started on lamotrigine or brand lamictal and had to stop recently due to allergic reaction just rash on back and flu symptoms. I am now on tegretol retard and cloblazam. Another MRI has now shown that I have hippocampus sclerosis and I am seeing my neurologist on Friday to see what can be done. Seems like scarring early in childhood has resulted in the tle. I will update so it may help others. Thanks for your support. Berrington, Glos, England, UK

 

[Nakamova]

Thanks for the update; I hope the current meds are working well for you.