Need advice

[starlit10577]

My loving boyfriend has just started to have sezures. He is 28 years old and been health all his life. In the last month he has been in the hospital 3 times because of sezure falls. Not one of these places have given us a answer. No one is saying for sure epilepsy and no one is saying its not. He is at a frustration point he wants to give up. I can't sit here and watch him give up. I will not keep doing it. My worry lvl is so high. He is not the kind of guy to give up yet he is. The medications they have him on is not working he has had a sezure every night for 3 weeks. Thank god most are in his sleep. But the last few days there more and more when he is awake.

I guess what i am needing is advice. I am out of ideas as were to turn now and for once in my life feel like i am in over my head. But this is the love of my life and i can not just sit back and hope for the best while the worst is going on.

[jgbmartin]

Welcome, you have found a good place for information. I got diagnosed last year and most of my knowledge come from those on here.
Is your boyfriend seeing a neurologist? Have they done any tests like EEG, MRI or a sleep study?
By definition, Epilepsy means someone who has had more than 2 seizures...so my definition alone he would have it. I have found out that seizure disorders vary greatly from person to person. But keeping a journal to determine what is triggering his seizures (as well as providing information for his doctor) is very helpful. Personally, I have problems with stress, when I have a lack of sleep and varies types of lights.
When I first started on Keppra (seizure med), I continued to have some seizures at first until they could properly adjust the level of meds to what I needed. There are also many different kinds of meds...some don't work for some people and they may need to either adjust his meds level or change to different typel
I do know having someone who is supportive is very important to treating the seizures
Jenn

[starlit10577]

He has had 3 EEG'S. He had 2 normal and one 3 hours video EEG. He has had MRI,CT, ECO'S. He has seen everything from heart,neurologist,phyc, and even surgery. The first EEG showed a spot on the brain but the did not know if that was cause of his fall. The second one showed 2 spots on the brain. (one on each side). He has been having sezures up untill 2 days ago every night one or 2 small ones. I am finding out though that he could have been having sezures before the one we saw. He was having black out's off and on sence feb.

I keep trying to tell him that I am hear and will never leave. He keeps telling me he don't need pitty and why would i want to be with a freak. I am at a loss for what to say. I tell him 100 times a day how much i love him and how important he is to me but what really can i say to make it all better? I wish there was a magic word to fix all of this.

[Loopy Lou]

I suppose i'm in the same situation as your boyfriend. I'm not having so many seizures though.

The doctors haven't proved conclusively that i have got epilepsy, but then they can't prove that i haven't either. I've had 2 "grand mals" that i know of, but my neurologist says that he thinks i'm having a lot of absences and "psychic" stuff. I never noticed cos it's just the way i've always been, although there were a lot of times i've been off in my head somewhere and obviously missed something. I have been formally diagnosed though, so i don't know whats happening at the moment. (I didn't know they could do that before tests?)

Still awaiting test results and i don't know what happens then. I'm on a fairly low dose of Lamotrigene (Lamactil is the brand name) for now.

If he's seeing a neurologist, make sure your boyfriend tells him that his seizures are worsening. It could be the medication.

I think this site is the best one for you to be on. It's full of good advice, and the people are friendly too. It's helped me an awful lot.

[jgbmartin]

Wow, he is really being put thru the mill on tests. God bless ya'll, I know it is tough. When I first got diagnosed, trying to accept it was the hardest part and I know everyone tends to take it out on those closest to us when we are struggling with that. He needs some time to adjust plus the added pressure of not knowing what will happen next makes it harder.
We are here for both of ya'll

[Nakamova]

Your boyfriend is probably pretty scared right now, which makes it harder for him to accept your love and support. That will change as the two of you get more information about what's going on and get a sense of the treatment options. You might try telling him that at least 1% of the world population has epilepsy in form or another, so your boyfriend is hardly a "freak." All kinds of people have all kinds of epilepsy. Maybe when he feels ready he could also visit this site for information and comfort.

[starlit10577]

Ty for the support. I am doing my best i just hope that we together can make it through this. it is harder then it looks that much i know.

[skillefer]

Hi starlit! Welcome to CWE. As jenn pointed out, by definition, epilepsy is when a person has had 2 or more seizures. by definition alone, your boyfriend has epilepsy. Now...what to do. first thing...get a neurologist. Find one that he can talk to and work with. Secondly, tell the neurologist about the meds and what's happening...because honestly, if a med works, it should work better then what you are reporting. so either his blood serum levels are too low (that means the amount of meds in his blood), or he needs a different med or another med added on. Now, understand that your boyfriend is feeling depressed. That's actually normal. the thing is, epilepsy is not the end of the world. I have grand mals (tonic clonics). they're the stereotypical ones where people fall down and thrash about on the floor. I usually bite my tongue and end up with bloody froth (spit) coming out of my mouth. And the people who have seen them, say that my hands and feet look like they twist all the way around. Even with this...I have a college degree, as well as an advanced degree, a loving family, a wonderful husband, a baby on the way, a driver's license, and a wonderful job. I teach in a public school. Epilepsy might limit what he can do for a while, as he adjusts to the changes that he will have to make (and please don't believe that meds are the magic answer...they only work for about 60-70% of the people they get prescribed to). There are some lifestyle changes he can make now, to help his meds be more effective. They are:

1. Eat 6 small meals a day. (By small, I mean it should fit on a dessert/salad plate. And by healthy, I mean if you have a carb, make sure you have a protein.)

2. Get 7-7.5 hours of sleep per night MINIMUM. (lack of sleep can trigger seizures...)

3. Find a healthy way to deal with stress. (Exercise, go for a walk, yoga, meditation, prayer, painting, etc...)

4. NO CAFFEINE. (it's a stimulant and can trigger seizures. So NO MORE:sodas, tea, coffee, mate, energy drinks, etc...)

5. Avoid all fast food and prepackaged foods. ( They are loaded with chemicals that can trigger seizures. and yes, you can develop food allergies and sensitivies over time. so even though he could eat them before, his body might not be able to handle it now. )

6. NO OTC meds. (Avoid all OTC meds for colds and flus. Most of them have decongestants (which trigger seizures) or antihistamines (which can also trigger seizures).

7. No Alcohol or other recreational drugs. (They can really screw up the absorption of the meds)

8. Call the pharmacy and see if there are any drugs or foods that should be avoided while taking the med that he's on. For example, one of the meds should not be taken if you eat or drink lots of grapefruit. The grapefruit messes up the absorption. Or, for Dilantin, never take calcium supplements or antacids within 2 hours of the med.

9. If he smokes, he should try to quit. (Cigarrettes place extra stress on the body...and he needs to try avoiding stress.)

10. Find a good support group. (It's a great way to get information because docs don't know everything....and it's a great way to be around people that are like him.)

Finally, try to remember some basic facts:

1. 1 in 10 people will have a seizure at some point in their lives.
2. According to the CDC, 1 in 100 people in the US have epilepsy.
3. meds are NOT the only way to treat epilepsy.
4. Meds only work for 60-70% of the people that get prescribed.
5. Some people find that alternative methods of treatment work better then meds.
6. If left untreated, epilepsy can be fatal.
7. If left untreated, the seizures are more likely to get stronger and happen more frequently. They don't just *poof* disappear over night.
8. There are lots of reasons people start having seizures as adults....for instance a spiked temp as a baby...meningitis as a child, head injuries, and a bodies reaction to thinks it's allergic to. As well as hypoglycemia, hypothyroid, vitamin deficiency, etc.
9. Epilepsy is not a death sentence. It's a medical condition like asthma or diabetes....you treat it and deal with it.
10. You arent' alone...and neither is he. Lots of people have gone through this. They made it, and so can you. We're here for you...

Soooo...feel free to ask questions, chime in, or just vent in the padded room when you need to. And have your bf stop by and just lurk if he wants to. It might help if he can see that there are a lot of perfectly "normal" people here. It's not a matter of being a freak...its a matter of being fearless.

PS= in the 30+ years I've had epilepsy, I've only ever had one abnormal EEG. All the rest were normal.

[starlit10577]

Ty all of you. I know we can get through this. I am just having a hard time keeping his spirts up.

Now about me a bit. I am a 31 year old single mother of 2 great children. One of which has bipolor,adhd, and intermitent explosive disorder. So i am not one to give up easy or fast. I love to fight the things people say can't be one. My boyfriend dave is the same. He is stubborn and pig headed most of the time. So for both of us to feel warn out on this is adding stress to are relationship and that scarries me more then this illness. I can't breath with out him so this all scarries me. I have never found something i could not stand strong with yet this is making me fear everything. I am scarried of so much now

not having him
watching this tear him up
watching him fight and loses day in and day out

[skillefer]

You say he's strong...then give him time to pick himself up, dust himself off, and give himself a kick in the rear. If he's truly strong, it will happen. You just have to let him have his time to be depressed and deal with it in his own way. He'll get there...just not in the timeframe that you might want.

[CJR]

All right...all men STOP reading!

Basic psych 101: Men need to provide, be strong, and be well...Man-ly! Any illness from the most minor sniffles to major life threatening conditions make them feel the exact same way: Weak. And no man wants his wife/girlfriend/woman to think he is weak. Period. So, my advice is very simple: He's been there for you (I'm sure) when you needed him more than anything in the world. So ask him...very gently...to please try to at least fake needing you in return. Then rent some of the funniest movies that you've ever enjoyed together. Make some popcorn. Cuddle up to him on the couch and...LAUGH. It'll do a world of good to remind him (and yourself) what is so great about just being together. The rest of the worries will be there after the movie is all over.

Remember, laughter is the worlds best medicine...especially if they can't figure out what meds to put you on! Good luck to you both.

[Meetz1064]

Starlit, it's nice to "meet" you.

While Skilly has covered most of the bases, I do have something to chime in here.

Those EEGs you spoke of? You REALLY MUST have a 24 to 48 hour EEG in order for the doctors to find anything truly conclusive. Ya gotta understand-- the EEG is like a photo--a quick snap of time for whatever length of time that was chosen for that particular test. If nothing happens during that length of time, well then, nothing is recorded, and it makes the doctor's job that much harder.

HOWEVER--when the EEG is AT LEAST 24 to 48 hours long, then you have a much better, increased chance of capturing a seizure on the EEG for the neurologist to evaluate. Now, it may not always happen, but the chances are GREATLY INCREASED.

And DO keep that journal that the others spoke of, in as much detail as possible. It WILL make all the difference in the world in helping the doctor try to figure out what your bf's triggers are, and if there are any patterns to his seizures........

Take care,

Meetz

[skillefer]

Totally agree with CJR....remember, he needs to understand that you don't see him differently. That to you he's still the same man he was before he found out about this...then, he'll be more willing to do what he needs to do. Also...don't make the mistake of mother henning him. He needs to feel like a man...not a boy. So don't talk AT him...speak with him.

[epileric]

I do hate friends that try to be too helpful after or during my seizures. It makes me feel like I can't help myself.

[starlit10577]

OK hear is a update and a few questions. Dave is at the hospital 4 hours from home. The only way i could get him to stay was to stay with him. Which is fine with me. I am tired though we have been here sence 4 am. He has been hooked up to a 24 hour EEG. Yet Not one of the sezures have shown any activity in the brain while having the sezures. He has had no sezures for years before we got together. Now he has them daily. I am starting to feel like this is me or my children that are stressing him out to have them. Anyway enough pitty on my part this is about him. I was trying to see if anyone on here has ever not had activity on a eeg. I am getting mad cause there answer is that it must be Phycalogical. He never had a sezure untill he fell and hit his head so how in heck can it be Phyc? He had a drunk stupped night and feel into a train track. We had a car roll over in January this year and sence that roll over he had black outs. No sezure that i could see but black out and fall. Then He blacked out and fell down the steps and Had a sezure that lasted about 4 min.

Anyway did not mean to vent. I am just worried about everything.

[RobinN]

My daughter has had only one abnormal EEG the other 4 were normal. It happens all the time. There are some areas of the brain where it is very difficult for the EEG to pick up abnormal activity. These tests are good, but not fail safe.

If you feel you are adding stress to the environment, learn ways to reduce it. Please know that you, nor your kids, can't give him seizures. There is something in his system that is causing this. Even if it is psychological, there is a cause. He can't control it. They are all considered neurological disorders. Epilepsy is only a lable and so is Psychogenic Non-Epileptic Seizures (psychogenic non-epileptic seizures).

It is possible that his seizure threshold was very low to begin with, and he was just holding on. After the accidents, and increased stress it might have pushed him to his limit. There are ways to lower the threshold. You might be able to do this easier than if he was diagnosed with Epilepsy. He would have been give a med and told to take it 3xday. You can now work on nutrition, and lowering stress, relaxation techniques, and also perhaps some therapy to help him work through what has been going on in his life.

Also, consider blood sugar levels. It was never diagnosed in my daughter, and she eats a healthy diet. It can be a cause of mental distress, psychological disorders, and seizures. Nutrition is HUGE. Doctors have not been trained in this to diagnose it.

I know you are worried. I was too. Be patient and learn as much as you can. Share the info with your guy, and work together to heal him.

[epileric]

Every time I go for an EEG it's different. As a kid it showed no unusual brain activity unless I was sleeping. If I had a seizure but was awake it wouldn't show. Years later it didn't show anything at all and as a teen it only showed abnormalities if I had the seizure while hooked up.

EEG's are not the most dependent machines. Many people don't show anything on the EEG or MRI but still have very real seizures.

[skillefer]

Starlit...I've been getting EEG's for over 30 years and only had one turn out abnormal. That's why some people (myself included) believe the longer or video EEG's are better. The only way an EEG is going to read abnormally is pretty much if you have a seizure while doing the test.

[morgan381]

Hi, Starlit. The others have given really good advice. Something you should think about regarding your boyfriend's depression: the medications tend to slow everything down (neurons relaying electrical impulses, in an attempt to stop seizures); also, many medications can make a person feel down and depressed. It's typical for a person to feel tired, gloomy and groggy until they adjust to having the meds in their system. (Though if they are not working, he should speak with his Dr and find something that does help--whether it be meds or diet/lifestyle changes)

As for the tests, I've had a "normal" EEG and an abnormal EEG, as well as MRIs and CTs. None of them were conclusive--that is, they didn't show a cause for my seizures.

Even though seizures are not terribly uncommon, they are stigmatized, which is due in large to the lack of knowledge of the general public. Tonic Clonic seizures can be scary to watch. It is that stigma that furthers the "I'm a freak" mentality. You have taken a step in the right direction by trying to get more information about seizures. The best thing you can do is to support him, but not baby him. My husband freaks out and makes my kids scared when I have a seizure...which makes my anxiety level higher and doesn't help the seizure any.

[alivenwell]

Welcome!!!
It does sound like stress is a big factor here. His feeling of being a 'freak' alone tells me he feels like a burden in addition to the challenging children in your life.

Personally, I find a good long walk a great stress buster. Have you considered investing in a dog? There are great breeds who are friendly with kids. That dog would 'need' his attention to go outside, eat food, play, sleep and generally provide him with company. Kids with ADHD are known to behave better if they read to the dog. And, if it's a high energy breed, it may be a great way for the kids to exercise. Get a dog, a bunch of toys and bring your husband into the picture.