How do I keep the faith?

[aggy84]

I have posted on here before. I'm 28 years old and since April 2012 I have been diagnosed with complex partial seizures. When going for many scans doctors confirmed I also have aqueduct stenosis and hydrocephalus. The neurologist thinks these problems and my epilepsy are not connected. I'm not sure how?
I have PCOS so my hormones are all over the shop, and just to point out I didn't start my periods until I was 18-19 and have never regularly had them. So if seizures are worse I don't know if this is because of hormones or what?
I'm on keppra, I started on 250mg twice a day, this went up to 50mg, then 750mg and I'm not merging onto 1000mg twice a day. I'm still having seizures. I'm finding I'm getting migraines after having seizures that linger and I know I may have another. I stayed in with my boyf last night, had classic fm on, drank fruit tea, went to bed and got up to get a train... I had a seizure whilst waiting... It leaves me tired, drained, confused, feeling worthless, I can't communicate. Just before everything is super familiar to me and sometimes de ja vu. I used to lip smack but since having tablets I don't think I do. My memory is awful tho I just know I've had one.
I want to live my life and I'm trying so hard when I feel so unsupported. Any advice, I had changed my life! I don't drink much, I exercise and train... But have had seizures mid classes. I may be doing too much but I want to live... I lost my driving licence it just can feel really depressing with all I'm dealing with.
Advice, help, anything. I want to do anything to make it all stop.

Xx

 

[Fedup]

aggy84

I am probable the worst person to answer you right now but let me try. The depression and anger never really goes away but you have to keep fight - says he who has just about given up - I am twice your age and I still feel as you do. You have to change your life style to accommodate epilepsy but it does not rule your life, wise idea cutting down on the drinking. You might want to see your doctor and neurologist and explain whats happening as a change in medication might be on the cards, the keppra can bring you down while being good at controlling the seizures its a medication I do not like because of its side effects. Its not easy for you but believe me looking at the good side is a big help and look through some of the threads wroth here especially the padded room and you will find others in the same place. All that can help really is remember its your life, ok you got a problem and nothing you can do about it but its still your life and try looking at the good time even look and realise your boy friend is with you.

 

[Chaz1]

aggy84,


My Son is 27 and he is E not me.

One of his saving graces is seeing a therapist; a person (who he really likes too) he can really let is all rip with. After this week’s session he told me, wow that felt good. We talk all the time, but not same, here my Son can really let go and really express his frustrations…

He takes a lot of supplements in conjunction with meds. One supplement he said helped reduce depression is Fish Oil (omega 3 NOT 6/6 and high quality omega 3 only). Plus it’s brilliant for the brain and some. Maybe u could do a bit of research on this…

You could ask your doc to check your overall vitamin and mineral levels?

None of this is easy for you to have to live with/deal with. So sorry… do educate yourself on the medications you are taking and the potential side effects.

Keep a seizure diary and write down every seizure and sensation, it will seriously help you explain yourself at doctors’ visits (this I can promise u)

 

[car05161967]

I have posted on here before. I'm 28 years old and since April 2012 I have been diagnosed with complex partial seizures. When going for many scans doctors confirmed I also have aqueduct stenosis and hydrocephalus. The neurologist thinks these problems and my epilepsy are not connected. I'm not sure how?
I have PCOS so my hormones are all over the shop, and just to point out I didn't start my periods until I was 18-19 and have never regularly had them. So if seizures are worse I don't know if this is because of hormones or what?
I'm on keppra, I started on 250mg twice a day, this went up to 50mg, then 750mg and I'm not merging onto 1000mg twice a day. I'm still having seizures. I'm finding I'm getting migraines after having seizures that linger and I know I may have another. I stayed in with my boyf last night, had classic fm on, drank fruit tea, went to bed and got up to get a train... I had a seizure whilst waiting... It leaves me tired, drained, confused, feeling worthless, I can't communicate. Just before everything is super familiar to me and sometimes de ja vu. I used to lip smack but since having tablets I don't think I do. My memory is awful tho I just know I've had one.
I want to live my life and I'm trying so hard when I feel so unsupported. Any advice, I had changed my life! I don't drink much, I exercise and train... But have had seizures mid classes. I may be doing too much but I want to live... I lost my driving licence it just can feel really depressing with all I'm dealing with.
Advice, help, anything. I want to do anything to make it all stop.

Xx

Aggy, While I am 45, I know what is like to have, both Hydro n' E. Where Aqueductal Stenosis caused your Hydro, a congenital(from birth)Ventricular Brain Aneurysm caused my Hydro. My E is caused by my brain surgeries for the VBA, and the Hydro. Seizures(when I do have them which is rare), leave me tired, drained, confused, feeling worthless, too. Along with not being able to communicate.

I too want to live my life. Even though I was married for eight years, when my (ex)wife n' I separated, I went back to living with my parents. 1998-2007, I lived with housemates, shared an apartment, or was living with a lady I was hoping to marry(thankfully that never happened). Since 2007, I have been living with my mother, and I hate it. I already experienced being homeless, so living with my mother is my best option. But her health is ever so slightly failing. So I don't know what will happen when the day comes that she can't live in the house anymore. If I am still here at that point, I don't know what will happen. I was planning all the way back in 2007, when my fiance n' I started dating, to move in with her. She lives in another state on the other side of the country. But her mental health issues have put that on hold. She is the only one, that has not held my physical health against me. My (ex)wife did that severely, and my (ex)fiance was 50/50. She was great when it came to my seizures. But when it came to my overall health, she held it against me.(she was diagnosed with Bi-Polar II, from what she told me, but probably has Borderline Personality Disorder according to my former therapist).

 

[RunningGirl85]

I'm not sure of the first disorder you mentioned, but I can understand completely in trying to feel better. I'm 27, and was just diagnosed in April, though my first seizure happened when I was 24. I was really depressed for awhile after being diagnosed, and still get really frustrated and depressed over it (though it has gotten better). Also not being able to drive has been one of the worst parts of all of this - particularly because I live in the middle of nowhere, and one of my favorite things was driving and exploring nearby areas. Plus I'm kind of a lone person anyways, so going on long drives was therapeutic (as is running, which I haven't been able to do either).

Anyways, I mentioned that because I want you to know you're not alone. I hope you can find some support here, I know it has helped me a lot. Especially because most people don't understand epilepsy. Though you'd be surprised how many people do (there was a guy next to me in the pharmacy who started the lip smacking, and the first thing I thought was, he must also have epilepsy). Keep living your life, and I think that will help you. As my therapist said, I may just need to learn to lean on others a bit more. I hate it, but I've gotten more accustomed to it, and it has helped me a lot. You'd be surprised how many people want to support/help. I know I was - even though I felt like a burden. But the more you continue to do, the better you will feel and the less epilepsy will control your life. Just keep getting sleep the way you should and eat right, and I don't think you'll be doing too much (I could be wrong, but that's what I've tried to do)

Also, you might want to see about another medication... either adding or changing. I was on Keppra alone and my partials didn't improve much, but since I've added in Lamictal, my seizures have decreased quite a bit. I also know hormones DO play a huge role in seizure activity. Actually I've noticed mine get worse before my period, so you might want to see about hormonal type therapies. I don't know much about them, but a few people here on here do.

I hope you feel better soon

 

[car05161967]

I'm not sure of the first disorder you mentioned, but I can understand completely in trying to feel better. I'm 27, and was just diagnosed in April, though my first seizure happened when I was 24. I was really depressed for awhile after being diagnosed, and still get really frustrated and depressed over it (though it has gotten better). Also not being able to drive has been one of the worst parts of all of this - particularly because I live in the middle of nowhere, and one of my favorite things was driving and exploring nearby areas. Plus I'm kind of a lone person anyways, so going on long drives was therapeutic (as is running, which I haven't been able to do either).

If you are referring to Aqauductal Stenosis, that is one of a number of ways, that someone can get Hydrocephalus.

I could care less about driving, probably because I live in a large metropolitan region with a good public transportation infrastructure, when I need it. I go on long bike rides. My bike is similar to the one in this picture:

; I do regularly ride in traffic, not only because I can by law. But also, if I have a seizure when I am not riding with someone else, no one would see me if I didn't ride in traffic. So no one could call 911 if I needed it.

Anyways, I mentioned that because I want you to know you're not alone. I hope you can find some support here, I know it has helped me a lot. Especially because most people don't understand epilepsy. Though you'd be surprised how many people do (there was a guy next to me in the pharmacy who started the lip smacking, and the first thing I thought was, he must also have epilepsy). Keep living your life, and I think that will help you. As my therapist said, I may just need to learn to lean on others a bit more. I hate it, but I've gotten more accustomed to it, and it has helped me a lot. You'd be surprised how many people want to support/help. I know I was - even though I felt like a burden. But the more you continue to do, the better you will feel and the less epilepsy will control your life. Just keep getting sleep the way you should and eat right, and I don't think you'll be doing too much (I could be wrong, but that's what I've tried to do)

I do lean on others. But I don't like it. So I try to limit that as much as possible. In terms of travel, the only time I rely on someone/something else, other than my bike, is in inclement weather(rain/snow/high winds), or I have something I need to take with me, that I definitely can't take on my bike.

 

[ekuadam]

It took me a while to stop really worrying about things. I still get moments where I dread I might have a seizure or that I might have to change the things I enjoy doing. It is always good to have good support around you that can try to help you keep your mind off of worrying.

 

[aggy84]

Thank you all for your replies.

To give you a quick update I'm getting a seizure around once a month now. I'm up to 1000mg twice a day. However, I've recently had 3 this month instead of one - all in a day or two or each other... I reckon its down to the fact I've had flu and I'm run down - not eating properly etc etc.
I can't cope feeling so confused anymore. I dont want the world to know I have epilepsy I just want to do anything I can to make them stop completely. After each seizure I have a vague memory of it but no idea of the content of my thoughts or what I did. That alone scares the crap out of me.
I often wonder if what I'm experiencing is just a panic or anxiety attack - even though the neurologist says its epilepsy. What do you think?
I'm trying so hard to live a normal life and I feel exhausted trying to remain positive all the time. I'm pushing the NHS on myself to get seen, they've lost referal letters and I'm digging about trying to move things along.

My neurologist says I have aqueduct stenosis but believes that has nothing to do with my epilpesy? I honestly don't know how its not?! I have PCOS too and was such a late developer that my periods didnt start til i was 19 then not properly until I was 21.... and thats when my 'funny turns' started.

I want to start a family in a few years but want to be healthy and stable myself, my entire life has suddenly been put on pause after years of being brushed off... you can see why I'm so frustrated.


I'm looking at CBT therapy purely because I believe I'm always anxious after a siezure which encourages another. I think this is down to the fact for years I hadnt a clue what was happening to me.

What do you do to keep positive? any tips?

xx

p.s love your bike! I ride everywhere now too.

 

[Nakamova]

Are your seizures hormonally-related? If they happen once a month, there may be a connection, and it might be worth looking into treatment with progesterone. Certainly it can't hurt to try the CBT or other counseling therapy -- it's good to have tools to deal with stress, regardless of whether the stress is causing anxiety attacks or causing seizures. If you are unhappy with your neurologist and his dismissal of the connection between the stenosis and your seizures, try and get a second opinion, and find out if such a connection would affect your treatment in any way.

As for staying positive, being proactive has helped me a lot -- getting as informed as possible about epilepsy, and then making concrete choices to deal with it and with other aspects of my life. I moved to a place where I wouldn't necessarily need to drive if I lost my license. I moved my office to my home. I have a circle of friends whom I know I can rely on for TLC. I have one friend who calls me nearly every day -- not to check up on me (though that's a bonus), but to help break up my day and keep me connected. I find that it's important to have things to look forward to. They don't have to be big things -- taking a walk on a nice day, or renting a favorite video to watch, or seeing my family next week for Thanksgiving -- but it's nice to put them on my calendar. It's also good to do things where I can see improvement. It can be instant gratification like vacuuming, or slow progress like doing exercises to strengthen my shoulder. Forward motion feels good.

I hope you can focus on the positive, but don't beat yourself up if you feel a little down from time to time. That's normal with something like epilepsy. Acknowledge it, put it in it's box and then move on.

 

[C0urt]

well, you have two options, laugh or cry... laughing is honestly easier i think, less mess. But some of us have to laugh just laugh to keep from crying.

I think most of us are here are depressed as hell, and you may as well be honest about it, so find little things to make yourself happy. read books, find a hobby, ignore rants like mine

on a side note. picture of my bicycle so you see how some of us do it,

and sweet bike car05161967, i used to love allez back when they still had 105 models

 

[car05161967]

well, you have two options, laugh or cry... laughing is honestly easier i think, less mess. But some of us have to laugh just laugh to keep from crying.

I think most of us are here are depressed as hell, and you may as well be honest about it, so find little things to make yourself happy. read books, find a hobby, ignore rants like mine

on a side note. picture of my bicycle so you see how some of us do it,

and sweet bike car05161967, i used to love allez back when they still had 105 models

Even though their bike is part of an E-Bay auction, here is an excellent picture: http://www.ebay.com/itm/Cobalt-blue-2003-Specialized-Allez-54cm-W-Cycle-ops-fluid-trainer-/280978788436?nma=true&si=8%2F%2BQ00qkV3BAtNC2ztsbXCaDUfg%3D&orig_cvip=true&rt=nc&_trksid=p2047675.l2557; Of what my bike looks like. What this bike doesn't have on the handlebars(that I do have) is a bike computer, and a heavy duty rechargeable headlight.

 

[momof3boys]

I have left temporal lobe epilepsy and was dx'd with PCOS at the age of 18. Ive been put on glucophage xr and birth control pills to regulate my periods. I had my first period at the age of 14, but then went for months without one... the longest being 18 months. I didnt know what was going on. I had the classic symptoms... weight gain, more arm hair, darker hair, some on my facial areas... like around my chin area, acne, cysts on my ovaries. Once I found out it was PCOS, I was given the glucophage xr and told to give it at least six months to work. My dr was right and Ive been on it since the age og 18, now being 31. Ive been able to have regular periods, and have had three beautiful children. Doctors before that told me I was never able to have kids of my own. I am still on the glucophage xr. I take 1500mgs each night before my evening meal. It helps with weight control, side effects and regulating my periods. In april I started taking a low dose birth control pill, which has helped too. Ive been on keppra since the age of 17. I was first on the keppra with carbatrol, but last year I was taken off the carbatrol and since then ive been on the keppra alone and Ive been doing good. They did try to wean me off the keppra, very slowly and I couldnt handle it. I started having seizure symptoms and had to be put back to the 3000mgs Ive taken since starting it. So far, things are going good. Today im trying the generic keppra xr for the first time.