I am looking for anyone that can give me some guidence and explanations or knowledge that will help me to understand and to deal with my boyfriend's epilepsy. We recently (July) moved in together. I love him very much, and I need to know how to help him and be supportive. I also need to try and understand what may be happening, as it scares me sometimes, and I feel it is only lack of knowledge that is breeding my fear.
He has been basically seziure free for about 4 or 5 years. He started experiencing seziure activity again in the last 6 months. I always thought that seziures meant convulsing...but I have learned that is not the case. Patrick has headaches all the time. It hurts me to know that his head is constantly in pain. He says he wakes up with them, and he goes to sleep with them. He has good days and he has bad days, but there is always some pain present. We recently went to the doctor and the doctor found out he has high blood pressure and put him on a beta blocker that was supposed to stop headaches too, but it hasn't done anything. It has happened a few times where he gets disorientated, he has visions, but is always conscious while everything is going on...he can converse with me while it is happeneing although sometimes he stutters a bit. He has various ticks and jolts occasionally but nothing really freaky. Yesterday, his head hurt him terribly all day. When I came home from work, he was on the couch and he was a bit lethargic...he feels worn out lots of times...I would too if I had a constant headache! Anyway, he was a bit jerky...he was flushing, and said he was disoriented...he would leave off in the midst of sentences and such. My first instinct is to panic, but I instead, turned on the TV, made him some supper and sat with him and tried to just chill out. Eventually I got him some tylenol PM which gave him some relief and he could rest. Today, he has slept almost all day. He said it isn't a lack of motivation. He simply lays down for a minute and exhaustion over takes him. He feels he is sleeping for a minute and really, it is 3 hours.
Is there anything that I can do to help him? Will any medications help? He has a nice doctor, which is important because as a teen and early adult (19,20) he was severely over medicated for both his seziures and for depression that came along with it. He weaned himself successfully from the meds and went basically incident free untill recently. He is very wary of being overmedicated again. Basically, the headpain is the worst...he would be much more happy and lively if something could be done to help that.
I am scared. I love this man more than anything, and will do everything I can..but, are we going to be able to be normal? Are our lives going to be able to go in the positive direction that we have been wishing and hoping for? I have been through a failed horrible marriage and waited 30 years for this wonderful, kind and loving person *here come the tears* can anyone help me to help him, and help me to understand?
Thank you so much...
~Blessings~ Anabel
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"Life is what happens
while you're making
other plans"~John
Lennon
__________________
"Life is what happens
while you're making
other plans"~John
Lennon
What kind of doctor is he seeing? Is it a neurologist or is it just his primary physician? I would suggest highly that he see a neurologist because of his history that he get an MRI and an EEG to determine if in fact his headaches are truly seizure activity and what kind of seizures they may be if they are. If they are seizures, a beta blocker is not going to stop them. For the high blood pressure, is he also addressing his diet? But of course, this is all just my opinion. The danger is, if any of his current symptoms were to lead to a grand-mal seizure, he could end up with restrictions like not being able to drive until the state you live in and a neurologist considers him neurologically stable by their guidelines(I'm in the "been there done that" category).
Thank you for your reply. Patrick hasn't had any Grand Mal seziure activity since he was 3. He has partial complex seziures. He is seeing a primary physician right now...he is new to the area and has been syptom free since he was 20 years old...he is 27 now, so he has not been seeing doctors frequently. Since he is new to the area and he is a student, he has no insurance of any kind. Money is no object to me, and I am sure we could get the bills paid somehow, but many doctors will not even see him with no insurance. We live in a small town in northen Wisconsin, population about 2,000. We have large "satellite" communities and not much health care. Right now, it takes about a month just to get in and see a doctor...let alone get an appointment to the Nurologist in Duluth. My best friends little boy had 2 Grand Mals and she has been waiting 2 months just to see the nuerologist. I am totally freaked here...he needs a referral from his primary physician to see a nuerologist, but I don't know if anyone will even see him without insurance. He has had many EEg's before, CAT and MRI's...as he basically had seizure activity from infancy to 3 years old, then it resurfaced again in his teens, then again when he was 19 and 20. He is fairly comfortable with his seziure activity...I am far more freaked than he is. But I am very worried and want him to get the right care....
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"Life is what happens
while you're making
other plans"~John
Lennon
__________________
"Life is what happens
while you're making
other plans"~John
Lennon
If he has no insurance, why does he need a referral from the primary doc to see a neurologist? Only folks with an HMO need a referral. Does he have family (parents, etc.) that could help him with medical bills?
Yes, we have people that can help us financially...that is not my worry. Here, at least, I have called a nurologist who practices in town...he is so busy that he doesn't take anyone without having a physcian referral. Not only that, but the referral has to be from a certain clinic...he won't even take patients from the clinic that we utilize. So that leaves us travel to one of the bigger cities nearby. I Do have a physician appointment FOR a referral set up for him, however Monday. I really had to put up a fight to get one, too. Around here in this rural area, there is such a demand for health care, yet very few professionals to provide it. It really is crazy, it is the pricce that we pay for living in "God's Country". It is very beautiful, but very hard to get anything accomplished! lol!
I want to thank you for your replies. Over the past week, I have become pobsessed with learning as much as I can about partial complex seziures and Temporal Lobe Epilepsy. Patrick has been great, mainly, I was afraid to ask the questions of him that I wanted because I didn't want him to think that I was panicked about it...or upset him further by acting anything less than calm and collected. We have had several discussions about it over the last day or two, which have made me more at ease, and better equipped to help him in ways that I can. Thank you for responding to me...
------------------
"Life is what happens
while you're making
other plans"~John
Lennon
__________________
"Life is what happens
while you're making
other plans"~John
Lennon
Please, Help Me!!! 
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