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Old 10-09-2002, 02:10 PM   #1
Junior Member
 
Join Date: Oct 2002
Location: Hayward, WI , USA
Posts: 23
Abelle HB User
Exclamation Please, Help Me!!!

Hi. I just registered, so I am a newbie.

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



------------------
"Life is what happens
while you're making
other plans"~John
Lennon
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"Life is what happens
while you're making
other plans"~John
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Old 10-09-2002, 08:57 PM   #2
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Join Date: Jul 2002
Location: Quakertown, PA, USA
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Mommeee HB User
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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).

 
Old 10-10-2002, 06:30 AM   #3
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Join Date: Oct 2002
Location: Hayward, WI , USA
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Abelle HB User
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Momeee,

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....

------------------
"Life is what happens
while you're making
other plans"~John
Lennon
__________________
"Life is what happens
while you're making
other plans"~John
Lennon

 
Old 10-10-2002, 09:49 PM   #4
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Join Date: Jul 2002
Location: Quakertown, PA, USA
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Mommeee HB User
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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?

 
Old 10-11-2002, 07:07 AM   #5
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Join Date: Oct 2002
Location: Hayward, WI , USA
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Abelle HB User
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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

 
Old 10-11-2002, 11:09 AM   #6
Senior Member
(male)
 
Join Date: Feb 2002
Location: Barlow,North Yorkshire,England
Posts: 227
couldbeworsaspose HB User
Talking

Hi,
I have temporal lobe epilepsy,I am 47,and even though only just recently diagnosed (99),I have managed to hold a job down and a marriage.I have two grown up kids as well!.I lost my job due to epilepsy...but they were right in letting me go as I was in engineering and It was dangerous for me to stay.T.L.E.is all I know so I can't speak for anyone else,but I won't lie to you It hasn't been easy.T.L.E, Is definately a state of mind,and as my neuro say's,It borders on psychiartry.I have had halucinations of the visual and auditory nature,have had horrible mood swings and to this day I don't know why my wife has put up with me lol,she has a heart as big as a lion.I feel sick and dizzy and my left arm hurts,I sometimes lock my self away,I go through periods of depression,and self hate!.But I'm still here so I hope you don't worry too much about having a life together,he's very lucky having someone as caring as you.I am sorry about the trouble you are having with doctor's over here the waiting lists are long,as I am told we have a shortage of neuro's as well,I managed to see one that had just come to York hospital.It's interesting you saying your boyfriend is lethargic,as I am lethargic and have lost interest In day to day thing's.I went for a blood test and was diagnosed with Hashimoto's thyroiditis.So now I take thyroxine and am very slowly starting to feel better,I am not saying your boyfriend has this..It's just interesting to find someone else with these symptoms.As for helping him,just be there.Stay well.
garry

 
Old 10-14-2002, 01:23 PM   #7
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Join Date: Oct 2002
Location: Stratford, NJ, USA
Posts: 53
MissingRay HB User
Post

Abelle,

Hi. I'm new here. I read your post about your boyfriend. Your doing the right thing by joining this message board to learn more about epilepsy. That was a good move. As far as your boyfriend, I would advise him to see a neuro. rather than just a primary doctor. A primary doctor does not specialize in seizures so your boyfriend may be missing out on alot of information that a neuro. could provide him. My boyfriend did not have insurance either but we still found a neuro. that would take cash. I think that is something that the two of you may want to do.

Take care,
Bridgette

------------------
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.
__________________
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our daughter, Colleen Rae.

 
Old 10-14-2002, 03:12 PM   #8
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Join Date: Jun 2002
Location: Preston MN
Posts: 31
mnsnellers HB User
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HI!! I have been through all sorts of sezires with my boyfriend, so if there is anything you want to know im sure i will be able to help you. But i think it is best that your boyfriend goes to see a Neuro. My boyfriend has had grand-mals abd pedi-mals. so if there is anything i can do to help you or give you anything on advise just let us know and i will be most great full to help you.

 
Old 10-15-2002, 03:04 PM   #9
Junior Member
 
Join Date: Oct 2002
Location: Hayward, WI , USA
Posts: 23
Abelle HB User
Smile

I have tears in my eyes reading your responses...THANK YOU every one of you who have taken time out to share knowledge with someone like me who really doesn't know much about this. CouldbeworseIspose, Patrick sees auras and gets very emotional, thankfully his mood swings are never angry, sometimes he cries and is fearful...but never angry or violent towards others or himself. When he was a teen, he didn't understand what was happening to him and stupid doctors deemed him schizophrenic, when all along, the visions he was seeing and the emotional upheavals he was feeling were all due to his TLE. The "paranoia" was simply self consciousness...and his fear of rejection of his peers from being "different"...all teenagers suffer from this, I cannot imagine how "left out" and scrutinized he must have felt as a teenager. MissingRay, your signature line scares me, but I feel tremendously for your loss. I was married before, but I can tell you I now know what love is having met Patrick...I cannot imagine a world without him...which is one of the reasons that Epilepsy scares me so much...although I know much of that fear comes with being ignorant to what epilepsy is all about and what it consists of.

Patrick has focal seizures and complex partials. For 8 years he had none, and now he is having them again. First came the headache. The headache is probably the worst thing, as the fact that it never subsides and there is little relief leads to his exhaustion and then eventually episodes of seizure activity. Does anyone know anything about the headche/migraines that plauge epiliptics? Patrick's headache never subsides, it is constant, sometimes becoming stabbing and migraine like.

We did go back and see the general physician, who is making a nuerologist appointment for Patrick. Hopefully that will get him some answers...And he is qualifying for some financial aid through the health care facilities that he is using, so maybe that will help.

Thank you again...so much for your responses. It sure helps to have people willing to share their stories, knowledge and suggestions. It helps so much to know that you are not alone.

Blessings~
Anabel

------------------
"Life is what happens
while you're making
other plans"~John
Lennon
__________________
"Life is what happens
while you're making
other plans"~John
Lennon

 
Old 10-16-2002, 06:21 AM   #10
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Join Date: Oct 2002
Location: Stratford, NJ, USA
Posts: 53
MissingRay HB User
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Anabel,

I am so glad to hear that your boyfriend is going to see a neuro.! That is great. Can you keep me posted after he sees a neuro. and let me know what the neuro. says?

Thanks,
Bridgette

------------------
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.
__________________
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our daughter, Colleen Rae.

 
Old 10-17-2002, 08:00 AM   #11
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Join Date: Oct 2002
Location: Hayward, WI , USA
Posts: 23
Abelle HB User
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For all who answered again, Thank You. Patrick's primary physician prescribed him a low dosage of Depakote to tide him over untill he sees the nuero. Unfortunaltely, he is not scheduled to see a nuero untill January and that sort of stinks...THANK GOD the Depakote seems to be working. Patrick told me yesterday that he feels better than he ever has in his life...even when he was off meds for those 8 years...he feels like he has more energy, confidence and that his thought processes are much more clear. I can even tell that he LOOKS better...he carries himself better, and his headaches are going away....I am so relieved. Hopefully the nuero will have some more answers for us when we actually go in to see him. It is sad that people have to wait for so long to recieve the medical attention that they need...almost 3 months he has to wait...isn't that ridiculous??? I just wanted to update, and to thank eveyone for their help...

Much love,
Anable

------------------
"Life is what happens
while you're making
other plans"~John
Lennon
__________________
"Life is what happens
while you're making
other plans"~John
Lennon

 
Old 10-17-2002, 08:29 AM   #12
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Join Date: Oct 2002
Location: Stratford, NJ, USA
Posts: 53
MissingRay HB User
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Thanks for keeping us posted!


Bridgette

------------------
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.

[This message has been edited by MissingRay (edited 10-17-2002).]
__________________
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our daughter, Colleen Rae.

 
Old 10-19-2002, 10:30 AM   #13
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Join Date: Oct 2002
Location: Cleveland, Ohio
Posts: 18
YogaMom HB User
Post

Hi Abelle,

I am new here too...I have not been diagnosed yet but I am going through all of the necessary tests as my doc thinks I have TLE. Anyhow, there is a great book called "Seized" that I just read and you may want to read it too. It talks all about things associated with TLE and helped me understand alot. That's great that you are helping your boyfriend so much! I work in a library and research is my thing so if you needed any information that I can help with, please don't hesitate to ask. Take care-

YogaMom

 
Old 10-19-2002, 10:25 PM   #14
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Join Date: Jun 2002
Location: Sanford, NC , USA
Posts: 65
Mmcginty HB User
Post

Hi,

If your boyfriend does not like taking a lot of medications, he might discuss with is neuro doc about vagal nerve stimulators. My friend who has epilepsy, had terrible side effects from her seizure meds got one put in and is totally off her meds. When you feel a seizure coming on she waves this magnet over the device implanted in her neck and it delivers a small shock to her vagal nerve that stops the seizure..

I hope this info may help,
Best wishes,
michelle
__________________
Michelle

 
Old 10-21-2002, 01:05 PM   #15
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Join Date: Oct 2002
Location: Hayward, WI , USA
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Abelle HB User
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Thank you very much YogaMom and Michelle. I FINALLY got Patrick's neuro appointment moved up to November 26th! It was like pulling teeth, but the receptionist at the neuro's was so helpful. Patrick's primary physician scheduled his appointment and didn't even mention the fact that he was having seizures to the neuro...just that he had "migraines"...ugh!!! The receptionist told me "if your physician has any ethics at all he HAS to reschedule for him...don't let them bully you and don't let them act as if you are asking too much.!" She said she would have taken an appointment from me but they can only take appointments from physicians, and she told me that she could DEFINATELY get him in sooner than the appointment the physician had set up. I swear to god I am so angry...but thankful at the same time that someone would LISTEN to me and offer help!!!

Yogamom, Patrick said that long ago, he had a copy of that book and he really loved it. It had alot to do with him finally understanding his epilepsy and weaning himself off of all the drugs that he had been prescribed. He always wonders what happened to that book, and I am currently looking for it on Ebay so I can give it to him again. I also want to take a gander at it. What I feel so interesting is that many sufferers of TLE have been highly creative people. Patrick and I are both poets and write (he fiction, I non-fiction) in our spare time...when we can. We actually met on in the poetry section of a web community we both belong to. He is also very musical.

Michelle, that is cool as heck about that implant. I am going to tell Patrick about it so that he can keep it in the back of his mind while consulting with his neuro...thanks so much.

And thank you to all of you wonderful people on this board who continue to be so friendly and supportive



------------------
"Life is what happens
while you're making
other plans"~John
Lennon
__________________
"Life is what happens
while you're making
other plans"~John
Lennon

 
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