New to all this

[MVATC]

Hey CWE members,
I was "introduced" to my epilepsy in July 09 while on a trip to Australia. I was having the time of my life when, out of no where, I had seizure while enjoying some sushi in the hotel lobby. I was taken to the hospital where they blamed it on dehydration and antihistamines. Wrong. The next morning I was on the plane just as we were about to take off for another city when I woke up in-between the rows of seats with a paramedic telling me I had another seizure. I spent the next 4 days in the ICU in Australia waiting for 24 hours being seizure free. Finally, I was allowed to leave and I flew back to NJ, my home state. What felt like a million EEGs, MRIs, and CT scans later the neurologist informed me I have epilepsy and started me on Dilantin (Phenytoin because it's cheaper). No explanation, just " OK here's how to deal with it". I'm an Athletic Trainer, a allied health professional, and I'm working on a masters degree at the University of Hawaii. I work with athletes and other people to diagnose injuries and design rehabilitation plans to allow them to recover from injuries that prevent them from everyday activities and participating in physical activities. I go out of my way to make sure my patients know exactly what's wrong with them and how we are going to fix it. My neurologist out in Hawaii is far more concerned about my Dilantin levels then he is about explaining why I'm having seizures on a weekly basis. It's amazingly frustrating. After 6 months from my first generalized tonic-clonic, I haven't had one in a few weeks. My dilantin levels are still low, 7 according to the blood work place. I'm already up to 500 mgs a day, after starting at 200, and my neurologist wants me to be at about a 14. If I have to take 10+ pills a day, I don't know what I'm going to do. I completely realize there are members of this site who have a far worse condition then I have, but I'm a young single guy living in Hawaii who 6 months ago felt completely invincible and just wanted to find the next wave to surf. Now, I don't drive, surf, swim, ride a moped, or go a full day without thinking, "Man, it would suck if I had a seizure right now." How does everyone deal with this? It's incredibly frustrating, and just makes me feel lonely. I joke around with everyone I work with and tell my family not to worry, but I think about it all the time. I'm also having some concentration issues, but I think I'll save them for another post. This message is a bit rambling, but it really helps getting it out there.
Thank you for reading this,
Matt

 

[dennis100]

I know the feeling Matt. I was working as a firefighter/paramedic when I had my first seizure. Shortly afterward I was forced into retirement. The reason doctors don't explain why you are having seizures is because in a majority of the cases the cause is unknown. Hang in there Matt. Your first seizure was only 6 months ago. There are a lot of meds available. It just takes a little time to find the right one or combo.

 

[Nakamova]

Hi Matt --

Welcome to CWE. Dennis is right -- the time right after diagnosis can be unusual stressful as you try and get the hang of the seizures and the meds and the insecurity about both. It sounds like your med might not be working for you, especially if you're having concentration issues. There are other meds out there, so at some point it may be worth discussing them with your doc. I don't know if this is an option where you are, but neurofeedback might be a useful therapy too.

Although the majority of us never know for sure what "caused" our epilepsy, there are ways to try and identify individual triggers that can provoke the seizures. The dehydration and antihistamines that your initial seizures were blamed on might not explain your lowered seizure threshold, but they might have been the triggers that put you over the edge. It's a good idea to keep a seizure diary that records not only data about the seizures (when, what happens, how frequently), but also info about diet, metabolism, sleep, activity, and environmental and physiological stressors. You might find that dehydration or low blood pressure is a trigger for you (as an Athletic Trainer you probably already pay attention to those). Others here are sensitive to certain sounds or to fluorescent lights. And diet may play a role -- some folks have found that a gluten-free diet has reduced the number and severity of their seizures.

I hope you feel free to settle in here at CWE and explore the different forums -- we have places to chat and vent, as well as post and ask questions.

Best,
Nakamova

 

[BuckeyeFan]

:cheers:

Hi Matt and welcome to CWE. First let me tell you that even though some people may have worse issues, yours are still very real, important, and deserving of support. I didn't catch your age, but I am guessing early 20s and mine started at 20. It is extremely frustrating. You go from a healthy young man to one somewhat dependent on others. You now have limits imposed and that seems so unfair. I think what is worse is the fact that it is such a hidden disease, many folks don't understand what you are battling each day.

I am not surprised by your Neuro's actions. Many of the specialists focus on their one issue and forget to treat the person. Dennis is right in the fact that well over half of E is idiopathic (no known cause), mine is. That makes it like fighting something blindfolded. What do you swing at. Insist that your neuro discuss with you where this is heading. He may only have vague answers, but he needs to communicate with you.

I have been taking dilantin for 28+ years now. It worked OK the first 22 years, but I still had occasional seizures. Over the last 6 years, it has been combined with other meds and is working pretty good, no TCs since.

A couple of things about dilantin. That blood level is extremely important. Dilantin has a fairly short 'half-life' which requires a steady input. Some people are more sensitive, but 10-20 is the normal range. I don't like to be below 12. Too high is not good either. It can make you very groggy and clumsy.

I would suggest you talk to your neuro about getting on a brand name dilantin, at least until you get better control. The generic phenytoins are notoriously inconsistent. They can be effective, but the required mgs is not consistent. I have read that it is one of the worse generics. There is a new extended release dilantin out (dilantin xr) and I personally take a different brand name called Phenytek. Phenytek is a time released version as well. I take 300 mg in the morning, 200 mg at night.

I hope this helps. Hope you can stick around here and good luck in your fight against E.

 

[josieb]

Hello Matt and welcome to the group! Although for some of us, it goes back many, many years, most of us do know what it's like to first deal with the initial diagnosis - and - the major changes in our lives. You are not alone.

As others have noted, there are so many meds out there now and different combinations to try together. Sometimes it does take a while to find the proper drug(s) and correct dosages to get an indfividual under control.

I wish you good luck and hope things get better for you.
Sincerely,
Josie

 

[skillefer]

Hi Matt! I take Dilantin. I found that my absorption of Dilantin was jacked up when I was taking a calcium supplpement. If you're on a calcium supplement, you might want to stop. I went from a serum level of 4 (while taking 100mg. 3 times a day) to 28 when taking 100mg. 4 times a day. I'm now at a 14 with 100mg 3 times a day. The drastic change was due to me being on a calcium supplement when I first started Dilantin. The calcium inhibited the absorption. Hope this helps.

 

[Ruth]

Hi Matt, welcome to CWE. This forum was made out of love by Bernard for his wife Stacy. That love permeates throughout all of CWE.

You will find a lot of support and help here. Glad you are here!!

 

[BuckeyeFan]

Hi Matt! I take Dilantin. I found that my absorption of Dilantin was jacked up when I was taking a calcium supplpement. If you're on a calcium supplement, you might want to stop. I went from a serum level of 4 (while taking 100mg. 3 times a day) to 28 when taking 100mg. 4 times a day. I'm now at a 14 with 100mg 3 times a day. The drastic change was due to me being on a calcium supplement when I first started Dilantin. The calcium inhibited the absorption. Hope this helps.

That's interesting. I am supposed to take calcium with vitamin D, because dilantin can deplete your body of calcium and thus your bones. Was yours in the form of an anti-acid like Tums. I have been warned to stay away from those.

 

[skillefer]

Nope...mine was a calcium + vit. D supplement...

 

[RobinN]

Hi Matt - Welcome
My daughter's first seizure was a few months before she started HS. Boy did this change her life quickly. She has been learning to deal with the what-if's rather well at her young age. No driving though, which is difficult in SoCA.

We tried meds first with terrible results, and now she is dealing with them strictly by making nutritional changes. So much of our Standard American Diet SAD, is causing disorders, illness, neurological issues, etc. For us the meds made all of it worse. Her body really reacted and side effects were unacceptable.

Have you had any other medical issues, rashes, allergies, GI problems, dental work, etc?

 

[wanderlust]

Hi Matt, and welcome.
I am twenty years old and my first seizure was last April, and my official diagnosis followed in November.. so, like you, I am a young adult trying to adjust to epilepsy now being a part of my life, and I know that it's not always easy and that it can also be very isolating at times. That's the great thing about these forums - everyone here understands what it's like.

I have found that attending epilepsy counselling is very useful with helping me adjust. At first, I was so angry that I couldn't do some of the things I used to do all the time (late nights out, drive, swim) but it definitely helps to talk about it out loud - and here online as well. Also, I find that asking lots of question and reading up on epilepsy helps a lot. Until I found out I had epilepsy, I knew absolutely nothing about it. I find that the more I learn and understand, the better I feel about having epilepsy as part of my life.


Good luck with everything, and remember you're not alone!