Another Newbie

[tallanc]

Hi Everyone

My partner suggested blogs and forums as a great way to find other people in my situation.

I'm mid 20's just been diagnosed and had my life turned upside down.

I have temporal lobe epilepsy. No Grand-Mal yet. Just Complex Partial so far. I'm getting to grips with the lingo. my partner and I have suspected for the past month or so and requested the referal to a neurologist, but we didn't know how much things have to change.

My job is changing (cos I drove for work), we'll have to move, (my partner doesn't drive, and we live in a village), Applying for benefits/bus passes/railcards/etc ...very confusing stuff.

Also I have a diagnosis of Adult ADHD too. I was wondering if anyone else on the forum has a similar combination of brain issues. At the moment I think I might put myself on the brain transplant waiting list. If I put my name down now with the NHS, by the time its perfected, I should reach the top of the list.

Tallan x

[Nakamova]

Hi Tallan --

Welcome to CWE!
We have folks from all over the world on this site (including from the UK), and people with all kinds of experiences with epilepsy. I'm sure you'll hear from some of them soon! In the meantime, I hope you get a chance to search through the site and explore the different forums.

Best,
Nakamova

[epileric]

I also have simple & complex partial seizures. I have had about a dozen tonic/clonic in my life & I'm hoping I never have those again.

I was diagnosed with ADD years ago and was put on dexedrine for a short while but have not really done anything about it since.

Where are you? I'm sure someone in your province or state might be able to give you some info that would make applying for benefits easier.

You said you were going for a transplant? I know that they often remove the part of brain that might be causing the seizures or separate the 2 lobes but I haven't heard of them doing transplants to cure seizures.

As far as brain operations go... I"m reluctant to let them try any sort of operation as the results can vary. I would recommend trying other types of therapies first & going for an operation as a last resort. http://www.coping-with-epilepsy.com/...ive-treatments You can also check out the history book to see what experiences people have shared with the various alternatives. http://www.coping-with-epilepsy.com/forums/f32/

[tallanc]

I was joking about the transplant I don't like the idea of surgery either. It was a dig at our NHS too :-)

I'm on methylphenidate (Concerta XL) for the ADHD and Carbamazepine for the seizures. just waiting for the latter to kick in.

The biggest irony of the lot is my seizures are triggered by stress, and now I'm under the biggest amount of stress I've ever been under...

Tallan x

[dfwtexas]

Hello and welcome to our group, I got diagnosed with simple and complex seizures about 2 years ago at age 47. It is a struggle, I do good for 4-6 months, and then get hit knocked down again. I do have to say that this site has been a godsend for me....sometimes when I feel isolated from others, I come here and feel almost normal! This is a wonderful place for information, support or even just venting. Like your sharp wit!
jenn

[RobinN]

Tallan -
Welcome to CWE. I am glad that your partner has recommended finding support online. I have found most of my knowledge from internet sites, rarely offered to me by conventional medical doctors.

I am going to throw out two suggestions, because I tend to be a bit of a rebel as I search for alternative therapies for my daughter. We tried the med route and it was horrendous... to say the least. I knew that there had to be another way. I found a lot of information online regarding nutrition and neurological disorders. There is a huge connection between the health of the GI system and neurologist issues. This is proving to be our answer, so I share what I know with others. I would hope you might be open minded in this approach as well.

When you say you also have been diagnosed with ADD as an adult too, this puts up a red flag to me. It is an easy route to take to see if food sensitivities, allergies, intolerances, etc might be what is causing your neurological issues. There has been research done that proves that this can be a cause. I wish I had known this when my daughter first began having seizures, then we would not have wasted so much time, and she would not have had such emotional distress (she began having them the summer before HS).

Also, Neurofeedback is extremely helpful with both seizure disorders and ADD. We have used this therapy with great results. It does go hand in hand with nutrition though.

[Meetz1064]

the mornin' to ya, Tallan! *grinning* Sorry, I just woke up.

I'm Meetz, and it's very nice to meet you.

I've had the pleasure of being blessed with *sarcasm* four types of seizures. One of them, the tonic clonics, you've been lucky enough to NOT have yet, and I hope you never do. ALL of my seizures though, are in my sleep, which is the reason why they are called NOCTURNAL seizures.

I do use the celiac diet to help control my seizures, as I have been diagnosed as a celiac patient--prior to the celiac diet, I was using something called the GARD diet. Add to that the various supplements--some vitamins, as well as zinc, selenium and magnesium to help with brain health and a few other things, and my body is doing much better. There is a LOT to be said for diet.

Something else to consider is an E(pilepsy) journal. Starting one as soon as possible will help you and your doctor to identify any possible triggers that you have. While you may already know some, there may very well be others that you don't....so taking the time to track various things will help you both.

If you'd like that list to start the journal with, let me know, I will provide it for you, I have it.....*scratching head* I put it around here somewhere....

Anyway, I do want to take the time to welcome you to CWE. There are lots of great people to make friends with here. And, there is tons of information to find--the Kitchen and the Library are great places for that. If you ever feel the need to just vent, then head to the Padded Room. Trust me, we've all been there on occasion.

Mr B has built us an AWESOME home here, so kick up your feet, enjoy the dinner party, and hopefully one of the guys (Buckeye!!) will bring you some decent (decaf) coffee--I keep burning it. *sigh* You'd think I'd learn by now.

Take care,

Meetz


PS..........I like the idea of a brain transplant. I may join you......

[Nakamova]

Don't forget that when you're getting a brain transplant, the female brains are cheaper. Because they're used.

[Meetz1064]

a GOOOD one, Nak!!! I LOVE IT!!!!!

They're sharper, too, I think.........from years of thinking on their feet, ya know.....*laughing*

[roo]

Hi Tallan,
I'm pretty new here also. It's good your partner has suggested you join a forum, as it always helps to know you are not alone.

I have temporal lobe epilepsy also - simple & complex partial seizures and have been newly diagnosed, although i suspect that i have had them for some time. I also have another neurological immune disease, Myalgic Encephalomyelitis and find it difficult sometimes to work out what is causing which brain symptoms.

I hope you get some help with your other problems of daily living, transport etc. Will social services be able to help you at all, I hope so.

I've been waiting for a brain transplant for years, but no go I'm afraid! Not much of a brain left in there to transplant I guess

take care,
Roo

[gigi]

Tallanc:

Welcome to the site. Good luck with your journey on finding solutions to your epilepsy. Here's to a good quality of life!!

Oh and I would want a female brain transplant, if I were you guys, so you can avoid the "one track mind" problem so often involved with yous guys. (snort)

[Cinnabar]

Hi, Tallan and welcome. I have Temporal Lobe Epilepsy and am providing a little link which may help you understand it a bit more. Yet there is so much more to know. I don't have ADHD but other accompayning disorders, Bi-Polar and a Dissociative Condition. Not easy or really comprehensible when you've got the "additional". As others suggested, I would hold off on surgery. Scary business! Take your time gathering as much information as you can. And you've come to the right place for this! The Library and The Kitchen are good places to gather and exchange information relating to all forms of Epilepsy. Glad to have you here!

http://www.med.nyu.edu/cec/epilepsy/...oral_lobe.html

[NomedArt]

hey, Im zontonnia had gra mals and all for life but this is the first time ive heard of a brain transplant- do you think its really that serious- im not trying to detour you from doing so- i mean it could be the best option. but are they causing you that much pain?

[Kansas Educator]

Okay, Tallen, I totally "get" that you are being sarcastic about the brain transplant -- or any surgery for that matter -- right now! I hope though that the medicine kicks in quickly and you can get back to your normal life -- whatever that may be. I was diagnosed at 53 and mine is controlled by medicine. Other than the side effects of the medicine, I haven't really let it affect my life at all. Come back and visit us often!

[Jessdenn82]

I am new on this site as well and have found it to have a wealth of information and the people are really great as well, have also found it a great place just to vent to help release some of the stress. Which I can totally relate too I have an abundance of it in my life as well I am a mother of three boys which are 10/7/ and 22 months old which in itself is stressful. I work as an emergency room nurse which I am currently on leave from till they get the medications under control. Which is super hard to deal with I went from being a very independent mother and at times feel I am losing my mind, I went to really great doctors so I ended up having all my testing done and being diagnosed in literally like 15 days or so which is really fast helps to know people in the medical profession. But it all started Christmas eve night when I went into a t/c seizure in front of my whole family this had been the first that my mother or my husband had witnessed I was unconsciousness and don’t remember any of it I awoke and remember screaming at my mom for calling EMS. Which looking back wasn’t the best way to deal with things my kids told everyone around me when I was having the seizure it’s ok give her about 10 min and she will be fine, from talking to my 10 year old found out that over the past several months my kids have actually saw about 7-8 t/c seizures so I didn’t seek medical treatment cause I really didn’t know what was going on. EEG came back abnormal and diagnosed with temporal lobe epilepsy on keppra which I hate cause of mood swings but also think having other types of seizures too cause my husband has noticed times where he says I am here but not really. It is very frustrating to find out that I have had symptoms of this for years and can actually plot a timeline backwards but doctors weren’t doing the right tests to diagnose it. I have gone through the angry, grief stage which I am sure isn’t over lol with new things to deal with since I am new to thing new stresses come I am also not driving which is a pain in the u know what my husband has to work so now I am relying on my sons friends parents to drive and pick them up from school which I hate asking people for help and feel like I am constantly putting people out. I am lucky I have a husband who is learning to be very supportive and dealing with this but it is very hard on him too he was very scared and mad in the first week or so and wouldn’t talk much too me and I found out he was terrified that something bad was going to happen to me and there was nothing he could do to stop it. I am still in the process of getting meds increased and such to deal with different symptoms and trying to avoid things that cause me to get too dizzy, lightheaded, and see glitter in my vision I know it sounds weird and a little crazy. The job and not driving though is a huge stress in itself trust me I know I have gone through the whole thing of feeling like a child, feeling like a bad wife and mom cause I can’t seem to do anything completely on my own right now. I don’t have ADHD however my 10 year old son does so I know very well what you are going through they finally put him on adderal xr which has been like a magic pill. and it helped him so much he was on concerta however we had to keep going up on his dosage and side effects were extreme and he got constant headaches which I couldn’t’ imagine considering I already get extreme migraines that they think is somehow linked to the epilepsy. I know best it’s just one more thing to add to an already full load and you feel like you’re going to explode.