Please help!

[mhamilt4]

Hello everyone. This is Mykie, and although I do not personally suffer from epilepsy, my boyfriend does. He is nearly 28 and the grand-mal seizures started 2 years ago.

With no family or medical history pointing to a possible cause, the doctors aren't sure what is causing them. CAT scans, MRIs, MRAs, and EEGs all show he is normal. He has been on Tegratol, Dilantin, Klonopin, (i feel like I'm forgetting one) and now Depacote...none of which are either stopping the seizures or allowing him to live a normal life.

The drugs give him the balance of a toddler, the memory of a gold fish (he can hardly remember the last 3 years we've spent together), and extreme fatigue and irritablility. The seizures come once about every 3 to 4 months now and are preceeded by about a month of what we call "hot flashes" (the doctors have used the term "petit-mal seizures") which upset his stomach as well as his frame of mind. He has had seizures in his sleep and while he was awake.

Two days ago he was on his way home from the grocery store when he had a seizure...in his car...while he was driving....with no warning, and no hot flashes before-hand. It took him an hour to come out of the uncontious state this time (normally it takes him about 15-30 minutes)...which the doctors say is WAY too long.

He is an auto mechanic, so it is possible he will lose his job as well as his driver's license, and he is sinking deeper and deeper into depression. He is currently taking Zoloft for it, but in combination with the Depacote and Klonopin, he is so tired that all he can think about is sleep. No one we've talked to so far has had any answers, or can even relate to what is going on.

I'm wondering if there is anyone else out there whose life has completely stopped because they have seizures. What do you do? How do you deal? Is there any hope for this ever going away?

I saw so many entries of people who "forget" they even have epilepsy, which is so wonderful! But I need some help. How long did it take your doctors to figure out what medicine was right for you, and the proper dosage? Is there anyone else that can't find a cause for their seizures?

How do you tell a 28 year old man that he can't drive, work, or even live by himself ever again because he has seizures and the doctors can't get them under control?...and then, how do you deal with the lasting depression that follows?

I know that every case is different, but I just can't find any information that even comes close to my boyfriend's case. I'm desperate. Any words of wisdom or comfort would be greatly appreciated. We are willing to try ANYTHING to get his life back to "normal". Thank you so much for taking the time to read this. Good luck to everyone with this condition! Just keep hangin' on!!

 

[Bernard]

Hi Mykie, welcome to the forums. I'm sorry to hear about your boyfriend's situation. He is very lucky to have someone like you trying to help him. I'm in a similar situation in that I look after my wife (who has epilepsy whereas I do not).

He is nearly 28 and the grand-mal seizures started 2 years ago. With no family or medical history pointing to a possible cause, the doctors aren't sure what is causing them. CAT scans, MRIs, MRAs, and EEGs all show he is normal.

First of all, the tests do not always pick up on seizure activity. Many people with epilepsy can have normal CAT scans, MRIs, EEGs, etc. It is quite possible that your boyfriend has had seizure problems for years that went undiagnosed.

If they did not find any scar tissue in the brain with the MRI, then I would think there is a very low probability that he could be a surgery candidate (if this was an option that he should ever consider).

He has been on Tegratol, Dilantin, Klonopin, (i feel like I'm forgetting one) and now Depacote...none of which are either stopping the seizures or allowing him to live a normal life.

He burned through 4 different drugs in roughly 2 years or he was on them before the first grand mal? If the former, it seems like he may not have been taking any one drug long enough for it to start working. AEDs (anti-epileptic drugs) do not work like aspirins. They don't take effect 15 minutes after ingestion and last for a few hours. It can take several weeks for the body to ramp up and maintain a therapuetic dose in the bloodstream.

AEDs are metabilized into the bloodstream slowly and the body needs to maintain a certain threshold of the drug in the blood for them to work. The levels of the AEDs in the blood can be sensitive to missing even a single dose.

Did he have blood tests done to ensure that he had enough medication in the blood?

The drugs give him the balance of a toddler, the memory of a gold fish (he can hardly remember the last 3 years we've spent together), and extreme fatigue and irritablility.

These are common side effects. Although in Stacy's case, her cognitive (both memory and critical thinking) functions are diminished by the seizures themselves and return to normal if she gets the seizures under control (ie. after a period of time since the last seizure).

He is an auto mechanic, so it is possible he will lose his job as well as his driver's license, and he is sinking deeper and deeper into depression. He is currently taking Zoloft for it, but in combination with the Depacote and Klonopin, he is so tired that all he can think about is sleep. No one we've talked to so far has had any answers, or can even relate to what is going on.

Talk to his doctor about possibly trying 5-HTP either in addition to or as a substitution for the Zoloft.

Sorry about the loss of the driving license. My wife has her license (the DMV never took it away) but has not driven in several years because she hasn't maintained her seizure control for more than 6 months at a time recently. This is a tough nut to swallow. Depending upon where you live, the Segway transporter might be a viable option.

We do have a discussion here on good jobs for people with epilepsy. Perhaps he can find something else that he will enjoy.

I'm wondering if there is anyone else out there whose life has completely stopped because they have seizures. What do you do? How do you deal? Is there any hope for this ever going away?

Carry on. Carry on. Yes.

Stacy had a taste of 4 years without seizure or drugs. We hope she can raise her seizure threshold that high again.

... I need some help. How long did it take your doctors to figure out what medicine was right for you, and the proper dosage? Is there anyone else that can't find a cause for their seizures?

Some people never find the magic coctail of AEDs for seizure control. Many, many people with epilepsy do not have a known cause for the seizures. There are however, many common triggers amongst people with epilepsy. You should keep a seizure diary to help identify patterns and trends for your boyfriend's possible triggers.

I know that every case is different, but I just can't find any information that even comes close to my boyfriend's case. I'm desperate. Any words of wisdom or comfort would be greatly appreciated. ...

Things he can do that might help:

• Establish a regular sleep pattern of 9 hours a night - this means going to sleep at the same time every night
• take a good multi-vitamin
• supplement important minerals such as magnesium and calcium
• get moderate exercise every day
• try EEG Neurofeedback
• Avoid caffeine, aspartame, alcohol and simple sugars

There is a lot of information posted here in this forum. Read all you can stand. Don't be afraid to ask his doctor questions too. Good luck and keep us posted.

 

[mhamilt4]

Thank you for such a quick response! I very much appreciate all of the advice you posted. You are such a saint!

Yes, he has burned through 4 medications in roughly 2 years. I thought the same thing about him not giving the meds a fair chance, but with him being a mechanic, he just couldn't stand the side effects. I have suggested to him a multi-vitamin a few different times, but he doesn't seem to like that idea too much. He's very hard-headed and independent. Before all of this started, he was rarely sick, and even if he got sick, he would usually avoid taking meds. He just doesn't like to be medicated, especially with these drugs and side effects.

The doctors were monitoring his levels while he was on the Tegratol and Dilantin, but when they switched him to the Klonopin, they quit testing his levels. The only medication he was on for about the last 4 or 5 months was the Klonopin (One .5mg tab once a day, or as needed). I'm not convinced this was the right approach, but it did keep the seizures at bay longer than anything we've tried..and he could function properly. We have had a really hard time finding him a doctor as well. We're on our 3rd neurologist and looking for another one. Unfortunately, the doctors he's seen in the past just group him in with the "norm" and won't listen to him when he tells them about how he's reacting to the drug. (which could be because they knew he wasn't at the right level yet, and wanted to stick it out for awhile longer). But, this last doctor won't even return his phone calls. We even went so far as to go in to the office without an appointment, and the doctor refused to see him, despite the fact that we had been calling him for about 3 weeks with no response.

We (myself, him, and his mother) keep a very detailed journal in order to try to see a pattern. We go as far as to keep track of what he eats, how much sleep he gets, the degree of the "hot flash", how long they last, how long it takes him to recover, etc. So far, it's random. We haven't been able to pinpoint any specific triggers either. I'm sure the stress and depression contribute significantly.

This stuff is all so scary! As I read the other postings on the site, I am so relieved that he isn't the only one that's going through this. I hope I can learn a lot from everyone here, and maybe even help someone else. Thank you so much![/quote]

 

[Bernard]

Yes, he has burned through 4 medications in roughly 2 years. I thought the same thing about him not giving the meds a fair chance, but with him being a mechanic, he just couldn't stand the side effects.

This is an issue that many people taking AEDs struggle with. There is a definite quality of life versus seizure free judgement in many cases. Sometimes, the side effects are worse when you when you first start a drug and diminish as the body adapts to it.

I have suggested to him a multi-vitamin a few different times, but he doesn't seem to like that idea too much. He's very hard-headed and independent.

There is a lot of research out there showing that vitamin deficiencies can lower the seizure threshold. You don't have to be full on sick to be deficient in a vitamin. Many AEDs also deplete the body of vitamins, so taking a multi-vitamin is a smart move.

Before all of this started, he was rarely sick, and even if he got sick, he would usually avoid taking meds. He just doesn't like to be medicated ...

Sounds like me. :lol:

Unfortunately, the doctors he's seen in the past just group him in with the "norm" and won't listen to him when he tells them about how he's reacting to the drug. (which could be because they knew he wasn't at the right level yet, and wanted to stick it out for awhile longer). But, this last doctor won't even return his phone calls. We even went so far as to go in to the office without an appointment, and the doctor refused to see him, despite the fact that we had been calling him for about 3 weeks with no response.

That's just pitiful. I hope you find a doctor that listens. It's important.

We (myself, him, and his mother) keep a very detailed journal in order to try to see a pattern. ...

Good work. Bear in mind that some triggers may take a while to manifest. For Stacy, ingesting caffeine (especially chocolate) almost guarantees her to have a seizure the following day.

This stuff is all so scary! As I read the other postings on the site, I am so relieved that he isn't the only one that's going through this. I hope I can learn a lot from everyone here, and maybe even help someone else. Thank you so much!

It's always scary when the seizures are not controlled.

 

[lindy]

Sorry about your boyfriend but Bernard is right. Some times the drugs don't work and/or the side effects are just too much to bear. Since there is no known reason for his seizure disorder, it might very well be a nutritional problem. I tried one drug or another or combinations of several drugs for more than 20 years without getting any control over my seizures. Then, I gave up on the drugs - after all, I was having seizures all of the time on the drugs so I would only be giving up the side effects - and started to take vitamins and nutrional supplements for epilepsy. Instead of having at least one grand mal and numerous partials a month, I have had three grand mals and no partials at all in the almost six years since I started the alternative to drugs. In fact, next month, it will be two full years since my last seizure. A great resource for more information on an alternative approach to seizure control is Prescription for Nutritional Healing. The section on epilepsy assumes that a person is on a drug but it gave me great ideas and a basis for what I'm doing now. What is your boyfriend doing for nutritional support? Is he at least taking a multivitamin every day?

 

[mhamilt4]

I read up on your posts about the supplements you've been taking, and suggested it to my boyfriend. He was waiting to consult with his doctor before doing more than just a multivitamin, but he has started taking one of those daily. (It's only been about a week since he's started this). A lot of the problems we are having with meds and doctors is stemming from his denial of his condition. I rescently found this out, and am working hard to help him accept his condition, and take the right steps to find a solution.

I am so glad to hear that the supplements have worked for you. It gives me great hope for my boyfriend. Thank you so much for your comments and advice. This site is so great! I'm trying to get my boyfriend to jump on here so that he can see he's not alone, and possibly try to relate to some of the other issues you all are dealing with. Thanks again! I wish everyone the best.

 

[Bernard]

A lot of the problems we are having with meds and doctors is stemming from his denial of his condition. I rescently found this out, and am working hard to help him accept his condition, and take the right steps to find a solution.

The emotional/psychological aspect of having epilepsy can be very tough for many people to deal with. See HowdyDave's post here for some perspective: stages of acceptance

 

[Birdbomb]

Please tell your boyfriend that there are over 2,500,000 people in the United states that have some sort of seizure disorder. He is FAR from being alone. Most people do not talk about it because of many misconceptions about Epilepsy.

Try to get into an Epilepsy support group, even if he won't go, you should go. When I was first diagnosed, I went looking for a group. I wanted information. The more you know, the better armed you are. Denial keeps you ignorant and keeps the truth out. Take an active part in his care and he may catch on.

It is very depressing to be diagnosed with Epilepsy. This disorder turns your world upside down, and rips you apart. The key to putting your world in prespective is knowlege and education. Learn all YOU can and teach those around you life goes on, dispite the challenges. When his attitude changes, his life will too.

This is HARD work and it takes time. He must go thru the grief process as part of his acceptance.

Good luck to both of you, and maybe one day soon, he'll see how lucky he is to have such a caring loved one like yourself.

 

[Bernard]

Well said BB. :agree:

 

[mhamilt4]

Thank you for the support. I feel like I've talked to him about this until I was blue in the face, but he just doesn't get it. He insists that since the doctors can't see anything wrong, then there's nothing wrong and he'll wake up one day and be fine. Not so much!! We are still trying to find him a new neuro (when he went to the hospital last time, they shot him up with tons of Depakote, and now he's taking 500mg/day...and hasn't had his levels checked since then, and I'm beginning to get worried), but I'm tempted to call the neuro before him appointment and have them lay everything out on the table for him. Maybe that would help? Kinda makes me feel like I'm being deceptive, tho.

I have been doing a lot of research about the vitamin supplements and 5-HTP, and have finally convinced Jeff to give it a try! Now, if I could just make him believe that he is taking these medicines/vitamins because he HAS to, we'll be on the right track.

I feel like the longer he's in denial, the worse it's going to be on him. I mean, he needs to greive and be sad, and then get angry, and then get motivated to do something about it, right? Isn't that how most people deal with life's speed bumps? I think it's a "man" thing. (no offense, fellas!) Something about being vulnerable just doens't sit well with him.

 

[Bernard]

You can lead a horse to water...

Every Jedi has to conquer their own fear.

 

[Birdbomb]

You can lead a horse to water...

But can't make him drink.....







Unless you give him a good rap in the throat! :horse:

 

[mhamilt4]

HAHA...crackin' me up!

Thanks for your help, guys. I'm gonna keep on truckin'!

 

[lindy]

It's so easy to be denial when all of the tests come back negative. I've had years of EEGs, CT scans and MRI which showed nothing but the seizures are very real. Spent a long time believing that there was some sort of brain damage from a childhood accident (fell 30' out of a tree and broke my back when I was 10 and the partials started a year later). After all, my mother said that there was no family history so it had to be from the accident. Turns out that there WAS a family history - my mother and her mother - but my mother is so completely in denial that we have only had one real conversation about it. She calls it "purposely passing out from stress" and she still keeps telling me that I'm brain damaged. Anyway, once I learned about the family history (and that was 20 years after I was diagnosed), it freed me to look at the whole thing from a different vantage point than brain damage. I do believe that those of us with idiopathic seizure disorders can benefit tremendously from vitamins and supplements. Why couldn't the seizures be caused by a nutritional imbalance? That certainly seems to be the case with me.

 

[Stacy]

I understand

I fully understand about the side effects of Epilepsy. It's SUCH a pain in the butt not to drive! (Especially when my husband suggests I as my Mother in Law to take me). I will be graduating with a Masters of Science in Environmental Science and Computer Technology in June. Having no recall stinks, especially when one has studied and studied for a test, and then has a melt-down during the exam. It happened during my Radiation class. I knew that stuff like the back of my hand, (I had even had the class before as an undergrad and made a "B"). As the test came to a close, my professor looked at his watch and said, "Stace, you have about 11 minutes left." I actually started crying, as I was on a first name basis with this guy, and I was trying so hard to impress him. I just couldn't take it. It was SOOO embarassing. I made a 56 on the exam. (I ended up with a B in the class again, thank goodness)

Someone once told me it's all there in the brain, I just need to find it. I've noticed that to be true, especially when you relax. Bernie has to remind me sometimes, but I always remember... even if it is a week later. Then again, I remember the strangest things at the strangest times. Oh right, my Dad's first job was at Burger Chef. Hope this helps.

 

[mhamilt4]

Well, last night was the first night Jeff took a dose of the 5-HTP. He woke up this morning vomitting and has had a series of around 7 petit-mal seizures throughout the day today. I have been at work, so the exact number is unknown since his memory is so fuzzy. I'm just glad I talked him into taking a couple of days off work until we figured out how he was going to react...we could have had a repeat of a couple of weeks ago. I was so hoping that this would be the answer we were looking for, but it's just not the case with Jeff. Looks like we'll have to take another route....

 

[Bernard]

Sorry to hear that it didn't work out. Throwing up doesn't sound like an adverse reaction for 5-HTP, but anything is possible I suppose.

Nothing ventured, nothing gained. Keep searching and hopefully the next test will pay better dividends.

 

[mhamilt4]

Well, the PMs make him vomit sometimes. Not every time, but the more intense ones do.

 

[Bernard]

PMs? I'm not sure I understood what you mean. Could you elaborate?

 

[mhamilt4]

Sorry, petit-mals. i was feeling a bit lazy then. I'm at work and it's nearing "quittin' time".