New To Here Help Me Please!!!

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lottyandandy

lottyandandy

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Hi My name is Andy. I started with Epilepsy when i was 8 years old. I'm now 26 and still the specialist and GP's are trying to get control and get me fit free. I suffer from both grandmals and petitmals and my last grandmal was just last week where i redislocated my left shoulder so its back to docs tomorrow to still sort that out and im still off work because of this.

I'm currently on Sodium Valporate, Keppra, Topiramate and i have also been issued with Buccal Medazalam to try to prevent my seizures from escalating into another. CT Scans, MRI scans EEG's have all come back inconclusive so we are looking down the route of Vagus Nerve Stimulation! Has anyone Else had this done at all? I would just like to hear of peoples experiences....

Currently live in West Yorkshire with my partner Charlotte (who will be also using this site to ask about my Epilepsy to get a better understanding of it) and about to become a dad to a baby girl (Lily-Rose) due on 19th may.

Also can anyone advise me on the terminology used on the site as insure what some means. Thank you... Look Forward to reading your responses

Andy and Charlotte :)
 
Here is a link to a book on Amazon that I think you'll find very useful: The book is Epilepsy Explained: A Book for People Who Want to Know More

By: Markus Reuber MD PHD MRCP (Author), Christian E Elger MD PHD MRCP (Author), Steven C Schachter MD (Author)

http://www.amazon.com/Epilepsy-Expla...ref=pd_sim_b_4

Editorial Reviews

In the last five years, approximately 2.7 million people have been treated for epilepsy and it is estimated that as much as one in one-hundred of the world's population will develop epilepsy during their lifetime. It is further estimated that 60 million people worldwide have epilepsy and in the United States alone, between seventy to eighty thousand people are newly diagnosed each year. Despite being such a common problem, most people know little about the disorder and people with epilepsy feel stigmatized.


Filled with illustrations on almost every page and boasting an attractive and stimulating layout, Epilepsy Explained offers a wealth of crystal clear information on epilepsy, intended for patients, family members, friends, and caregivers.

This down-to-earth book is divided into easy-to-digest sections that address such fundamental questions as what epilepsy is, what happens in different types of epileptic seizures, how epilepsy is diagnosed, and how seizures are treated. The authors include much-needed information on numerous topics, including living successfully with seizures, patients rights, and current drugs used to treat epilepsy--all described with directness and clarity, with many real-life examples that shed light on how the topic under discussion affects people with epilepsy.

The book includes information for particular groups of readers such as women, children, and teens. It has an easy-to-follow organization, is clearly structured and has a detailed index and glossary, allowing readers to easily find specific information pertaining to their condition.

Written by physicians who work daily with epilepsy, this clear and engaging book provides people with the knowledge they need to make informed choices about their illness.

About the Author

Markus Reuber, MD, is Senior Lecturer in Neurology at the University of Sheffield.
Steven C. Schachter, MD, is Professor of Neurology at Harvard Medical School and Director of Research, Department of Neurology, Beth Israel Deaconess Medical Center. He is the Editor of the Brainstorm series of books on epilepsy and Editor-in-Chief of epilepsy.com.
Christian E. Elger, MD, is Professor of Epileptology at the University of Bonn.
The late Ulrich Altrup, MD, was Professor of Experimental Epileptology at the University of Münster.

There's also an epilepsy glossary at http://epilepsytalk.com/2009/09/18/epilepsy-glossary-2/

Hope these at least give you a good start...
 
This post may contain affiliate links for which Coping With Epilepsy Forums may be compensated.
Hey Andy (and Charlotte),
welcome to CWE!

A number of CWE members have experience with VNS (Vagus nerve Stimulation). You can search for posts mentioning that topic using the search tab at the top.

I dislocated my left shoulder twice during tonic clonics (grand mal seizures), so I know how that feels. I ended up getting surgery to tighten up the torn shoulder muscle. (After 7 dislocations within a year I was tired of constantly popping it back in place). I hope that you are righthanded! And that you feel better soon.

Feel free to ask about any terms that seem unfamiliar. Folks here are friendly.

Best,
Nakamova
 
Hi Andy,

Congratulations to you & your OH, hope the birth goes well. Bet your both dead excited!
Good to see some northerners on here! :woot: I like to think of myself as an honery Northerner. Never been to Leeds but I've been told it's gorgeous...( & to check out your Harvey Nics store ;) )
I'm supposed to be starting on Epillim, how have the side effects been?
 
Hello and welcome Andy. I hope you get some answers here. For me personally it was a great blessing to find this site and all the supportive people here. Also getting any books published on Epilepsy within the last five years or so has been very helpful with terminology and treatment ideas. Just searching the posts on this sight is very educational as well. I am sure if you have specific questions a moderator can help if just send them a quick PM.

Hang in there and take care!

John
 
Thank you for your advice all very useful. Went to hospital on Thursday and am now due to go for Operation on my shoulder to fix this problem :woot:
Got my next Epilepsy Consultation on May 25th (little girl due on 19th) so see what the next steps will be regarding my epilepsy.

Becci90 - As regarding side effects to Epilim it is hard for me to say side effects of the drug as i have been taking this drug since i was 8years old. I can say, however, definite side effects were weight GAIN unfortunately and maybe slight memory loss.
Oh and Harvey Nics in Leeds is def worth a visit. Unfortunately for me my partner thinks its her 2nd home lol ..:lol:
 
lottyandandy said:
Becci90 - As regarding side effects to Epilim it is hard for me to say side effects of the drug as i have been taking this drug since i was 8years old. I can say, however, definite side effects were weight GAIN unfortunately and maybe slight memory loss.
Oh and Harvey Nics in Leeds is def worth a visit. Unfortunately for me my partner thinks its her 2nd home lol ..:lol:
Click to expand...

I went to Manchester Harvey Nics last weekend. I've never been before, was so expensive I didn't want to touch anything. I ended up in the foodmarket, that was a bit more affordable! :roflmao:
Oh, I hope I don't put anymore weight on, I've just managed to lose a stone from other med side effects, & I'm still bigger than I ever was before I started meds...Grrr!
Less than two weeks till bub is born then, how is Charlotte? Fed up of waiting now?
 
Yeah it is quite expensive, however we did buy some baby things from there (so adorable just couldn't resist!)

That's the pain with all the tablets, so many side affects :(! Some make you lose weight but then others make you gain at the same time so you just can't win lol.

Yep not long at all and she's okay just getting a bit fed up waiting now, gets quite uncomfortable in the last weeks but we both know it will be completely worth it and can't wait to meet the little lady :D!
 
Welcome Andy,

Have any of your doctors ever discussed nutrition and how it can be helpful in managing your health?
 
No my consultants have never discussed nutrition. On the amount of medication i am on i do get a lot of gastric problems which is why i take lansaprazole but i admit my stomach is very to sensitive to certain things:embarrassed:
 
Obviously it is more than I can write here in one post. When I speak of nutrition it isn't just how your stomach reacts to foods. It is how your GI system is absorbing the nutrients of which your brain needs many to function properly. There is a huge connection between the gut and the brain. Toxicity can also have a major impact on how your brain functions (other parts of your body too for that matter). You might consider doing some personal research here on the many threads related to nutrition.
It is a great way to begin being proactive.
 
Hi Andy, I agree with Robin in regards to nutrition. I too had to have shoulder surgery and a month later I had the Right Temporal Lobe Lobectomy surgery for the E. That was 5 years ago and it kept me seizure free for 4 years and unfortunately started seizing again May 09. I was put on Keppra and couldn't deal with it and opted to find alternative solutions for dealing with the E. I started a Gluten Free diet and have had great success. I obviously can't say this is for everyone, but it's worth a shot and I'm definitely not saying to stop your meds. Now when I have something with Gluten I can tell within 5 minutes since my head doesn't feel right...sort of like feeling the seizure activity and I'll usually seize that night in my sleep.
Good luck and I'm sure you'll find this site extremely helpful.
 
VNS Device

I have worked with 3 people who have had great luck with this device-I talked to a neuro about DBS also who said that technology is going more the route of direct brain stimulation rather than the vagas nerve. It appears the use it as the last resort before brain surgery. I do believe that nutrition would be the best route first-but it is also the most strict. VNS is also being used to treat depression. Meds all have such crazy side effects-which I am learning again after being off of them for so many years! I wish you all the luck. (the device is pretty simple...a simple magnet swipe reactivates the rate of pulse that the device is set to go off-to "jump start" you to in hopes, slow or stop the seizure....in and out in a day procedure)
 
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