New and need advice

[KellyB]

Hi everyone,

I found this forum today and as I read through, I immediately had to join. I am so impressed with the support and advice being given here. I am 25 years old and my boyfriend who is 30 has tonic clonic seizures about every 2 months, sometimes more often, sometimes less. We have been together a long time and I have always been there to support him. He had a seizure yesterday and I got really down in the dumps. As we progress in our relationship, I worry about the future - his health, employment, driving, children etc.. Lately, (out of frustration?) he has taken of a "roll with the punches" attitude, but I KNOW that there is more that we can do, I just don't know where to start. I am very interested in the drug-free therapies, diets, vitamins- because the adverse reactions from past experiences with meds have far outweighed the benefits and I think he needs to try something else and from what I have read there are several success stories. Any advice, steps to take, who to see, would be very helpful. Thanks so much for taking the time to read and reply.

[Meetz1064]

welcome to CWE, KellyB!!

You are right, there are other alternatives out there.....I am going to list some links for you to go have a look at, and then make a suggestion, too, so this post is going to be long. I apologize ahead of time.

Here are the links. The first ones are to different types of diets:

GARD DIET

KETOGENIC DIET

LGIT DIET

MAD DIET (Modified Atkins)

Here is yet another alternative. One of the other supermoderators, RobinN has quite a bit of experience with it. She uses it with her daughter, Rebecca, who is an E patient and a figure skater.

NEUROFEEDBACK

********************

Now, as to the other thing. It's called an E journal. OK, it's a pain in the arse sometimes, but it can truly be worth it, and it may help your boyfriend and his doctor actually figure out what his triggers are in the first place, and eliminate them, even if he does have IDIOPATHIC E (no known cause).

Things to put in the journal (and this is a DAILY journal)

1. Sleep (how much, when)

2. Eating (how much, when, what)

3. TV/computer/video games---yes, this is important. Some people ARE triggered by these and don't know it. So, put HOW LONG, WHEN and WHAT you were doing.

4. Meds. Dosages and when taken.

5. Exercise. Don't forget to do this, E patients do better when they are fit. (Meds process through our bodies better). Keep track if there is a particular exercise (running, push ups, swimming, etc) that triggers a seizure. Also document when and where you do the exercise.

6. Normally, I'd say track menses, but he's a guy. HOWEVER....guys do have hormone fluctuations, too. Get his hormone levels checked. Testerone, etc. Also, some may have issues with thyroid, and other hormones, so have the doc do a full hormone scan on him.

7. Drinking--both alcohol and other things. Alcohol should really be limited, or none at all. Other things, like caffeine, too, should be limited. So keep track of these, and see if a pattern falls into place.

8. Finally, have him actually start another journal where he takes a bit of time everyday to PHYSICALLY write out whatever is bothering him. Don't peek at it. It will be for him, and no one else to see. Once he can get a flow going, things will flow out for him, and if there is any pent up anger inside that maybe pushing things along (STRESS is also a big trigger) then it can be let out.

Responses to the above list

1. Sleep. For E patients, lack of sleep is a major trigger. 7 to 7.5 hours a night is the MINIMUM. No ifs, ands or buts about it.

2. Eating. One of the other supermoderators, Skillefer (we call her Skilly) likes to promote 6 small meals a day, and I think she's onto something. Basically, a protein and a carb that will fit on nothing bigger than a dessert plate. But, see what works for you.

In regards to eating, there are people whose seizures ARE triggered by eating (REFLEX E), and some who are allergic to foods (like me) that once they cut out those foods, have much better control.

3.TV/computer/video games---OK, you probably never really thought about this one. But, get a pair of blue polarized sunglasses and/or a glare screen for your computer, and it should help quite a bit. Some people are even tripped off by the patterns that trees' shadows make on the road when driving...

4. This is imperative. They need to be taken at the same time everyday so that the blood serum level is the same, day in and day out. This prevents (most of the time) seizures from occurring.

5. Not a joke. Some E patients do have seizures triggered by exercise. Be sure that your boyfriend does NOT do things like biking, swimming, hiking, mountain climbing, etc by himself, either. (***Important side note: This goes for cooking, and taking a bath/shower, too***)

6. Guys DO have hormones........so do get them checked. It is less likely that the hormones are a cause of his seizures, but it IS a possibility.

7. 'nuff said.

8. 'nuff said.


***************

I KNOW I forgot to put something in there *eyeroll* AND I know that that is a lot of information to digest. Sorry. Hope it helps though.

Feel free to check out all the nooks and crannies here at CWE. The Library and the Kitchen are full of great info, and the Padded Room is great for venting, too.

Mr B, our host, has built us an AWESOME home here.

Why not have your guy come join, too? It might help.

Anyway, take care, sorry if I overloaded you, and feel free to ask any questions you want. If you want, you can PM me (private message) anytime.

Take care,

Meetz

[RobinN]

Hi KellyB - Welcome to CWE

We were "introduced" to seizures three years ago. My daughter was 14 at the time. Tonic Clonic has been her variety of "choice". She was immediately put on meds, and it threw her system into chaos. Utter hopeless chaos. Luckily for her I am stubborn, and said they were unacceptable. Quality of life is important too. I also had a sneaky suspicion that there was more to her seizure disorder, than the doctors were letting on. I learned that seizures were only symptoms. There had to be a cause. Well some doctors tried to convince me that a "birthmark" was the cause. This made no sense since she had been fine for 14 years. My decision at that point was to work to get her body back to where her seizure threshold was high enough to deal with the triggers. I learned that we all have seizure thresholds.

After meeting www.dogtorj.com , and hearing him say "You have nothing to lose by making nutritional changes", I jumped in and began making changes in my shopping habits. It has made an incredible difference. Not overnight, but over the past two years I have seen her improve month by month. I can tell when she is not complying with the suggested food choices.

In addition we have done Neurofeedback, which has helped train and strengthen the brain functions. It no longer needs to release itself in the form of a seizure. We are continuing with this therapy, since we saw improvement in cognitive functioning as well as seizure control.

There is a lot of good solid information and anecdotal evidence. which states that nutrition can produce positive results in seizure control. I would highly suggest introducing this fact to him. He can improve the quality of his life, and thus relieve some of your worries.

As a caretaker, it is frightening, and can consume your every thought if you let it. I am glad that you joined us for support and to find out about HOPE.

[KellyB]

You guys are great, thanks for all the info and so quick, I will definately be looking into all of your suggestions and will keep you posted. It is great to not feel alone and have a place to talk and get information. Thanks again

[Bernard]

Hi Kelly, welcome to the forum.

... Lately, (out of frustration?) he has taken of a "roll with the punches" attitude, ...

PMA FTW!

... but I KNOW that there is more that we can do, I just don't know where to start.

My humble suggestion:

Proactive Prescription for Epilepsy

[alivenwell]

These lists are very comprehensive. Personally, I am in excellent physical condition which I attribute to walking my dog on a nightly basis. Our duration and intensity is determined by the heat and humidity of the evening. If it's way to hot/humid, I work out on exercise mats at home. I was told to lift weights to avoid/slow down osteoporosis.

Personally, I drink the small bottles of sports drinks so I don't consume too much at one time. They retain a good electrolyte balance. Vitamin D also does wonders, but I'd ask his physician about that one.

I do take medications. The side effects can be minimized with the correct dosages. Personally, I will not settle for generics. Brand name only!

One thing to be careful with is the exercise level. If metabolism is altered too much, it can throw one's system out of balance. Some medications are dependent upon metabolism. I could never get by without medications. I am seizure free for a very long time, I drive and I love my lifestyle. I totally agree with other opinions here. Stress is my biggest hurdle. One seizure can cause stress. And it can lead to another seizure. That's the trick of this condition.

I personally play piano for most of my life. Music can be very soothing. And, I can totally forget the stress of the day when I get engrossed in music.