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BethandCraig
New Member


Date Joined Oct 2004
Total Posts : 3
   Posted 2/4/2005 7:55 PM (GMT -7)   
I didn't want to post this on the board as it's a downer and I try to avoid those but after reading ranman's post about his sister, I am feeling so angry with my mum. Here's the brief version.
 
The reason I'm writing this is because my mum has also caused my E to be much worse than it could have been right now.
 
As a child (age 5), I used to "fall down" alot as my mum said. She ignored it because I always woke up. She later told me that my aunt passed out a lot and so it was inherited. I did this for years until I was a teenager and woke up in puddles of blood with gashes on my head. I demanded to be taken to a dr. Mum STILL said it was nothing. She took me to a cardiologist who put a pacemaker in. When I was with my ex I still had episodes but he also brushed it off and told me it was no big deal. I came out to Australia to visit my friend (now husband) and as soon as I had one of my episodes, he knew exactly what it was and got me to a dr. He used to work for Epilepsy Assoc. of Australia and had done extensive research on meds, etc. The Dr. put me on Epilim, Lamictal and Klonopin. That didn't work. My seizures got so bad that the Dr. gave us a script for injections of valium to stop bad generalised seizures. When I told my family I couldn't come home yet cause it wasn't safe to travel, my mum accused me of making it up. My ex (when I explained what my seizures were like-according to my friend) would say he had seen that type of behaviour many times during the 5 years we were married and never told me. He would just shut the door to the room I was in and wait for me to come out. ugh!!!
 
So, we got divorced real quick (other issues too). My now husband and I went home to the States to visit my family and during that trip, my mum still insulted me for thinking I had a problem. I spoke with the Aunt she said passed out a lot and the Aunt told me that was untrue. She has passed out once or twice after major dental surgery or something. I also learned during that visit from my dad that his cousin had died from a seizure and his father also had E. I was sooo angry with my mum for not tell ing me this and also for not taking me to a dr when she knew this ran in the family!! Hell, it's possible we could have tried something like the keto diet and I wouldn't have seizures now. Now I have seizures I can't control with any meds and I'm not a surgical candidate. Also, while I was home, I was admitted for status and spent 6 days in hospital. When I got home, I was bombed out on the new meds (dilantin, keppra and klonopin). All of a sudden a disease she hasn't had in 10 years shows up!! She had miniere's disease 10 years ago but hasn't had it since. All of a sudden she's complaining every day, has to go buy new salt free foods, etc. By the time we left though, she was eating her nightly meal of pizza and junk food. She just wanted the attention.
  
I'm convinced had I not met my husband, I'd be dead by now as my seizures have gotten worse over the years and no one seemed to care. It was a coincidence cause while I knew he had been involved with E, I had never known anyone with E or seen a seizure myself. How dare my mum accuse me of making it up after she WATCHED me have seizures my whole life.
 
While I was in hospital for status the neuro said it was very likely that all my "falling down" were seizures and should have been treated years ago.
 
I'm just so angry and frustrated because my seizures are out of control. I have a cocktail of them daily despite meds. So far I have taken Epilim (depakote), Lamictal, Klonopin, Dilantin, Keppra, and Tegratol. Every time we leave the house, my husband carries a few injections of valium with him "just in case". I know this is how it's going to be for ever now. My dh wants to get me of epilim now and on neurontin with the tegretol and klonopin. However we have to get an authority for the Dr to prescribe that and they are being jerks atm. I just don't understand why it should be this hard.
 
I don't speak to my mum anymore and she acts like it's fine. I'm just the daughter who always wants attention. Anyway sorry for the long vent. I'm just very frustrated right now and so is my dh. He's almost an expert in this field and could successfully argue with any neuro (and has) and even he is at a loss.
 
Ok, enough about me....sorry...just need to get that out. Needless to say I have very few friends due to my constant seizures so I don't get the opportunity to vent much. LOL
 
This board is awesome! I read everyday and post only on occassion.
 
Beth
dx Nov. 2001
probably E since childhood
currently: 900mg Tegretol
              400mg Epilim
                6 mg klonopin
 
previously: Lamictal, Dilantin, Keppra, phenobarb
 

DBG
Regular Member


Date Joined Sep 2004
Total Posts : 235
   Posted 2/4/2005 8:27 PM (GMT -7)   
((Hugs)) Beth.  That's one of the worst parts about sz's is that for alot of people sz's aren't diagnosed til much later in life because of a lack of training on the Dr's part or denial on the family's.  Venting is what this forum is all about and who better to vent to than those who've been there.
Christine 

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 2/4/2005 8:32 PM (GMT -7)   
Beth, I am so very sorry you have had such a rough road and did not have support for so long...It is fine to post, even a downer. It is SO important to reach out and get support. It hurts so much when you cannot talk to your own family or have them understand!!


Hang in there and please post when ever you want. I think we spoke in chat a few months ago...So sorry, but so wonderful you have a new husband who loves you....

Pumpkin2
Regular Member


Date Joined Oct 2004
Total Posts : 28
   Posted 2/4/2005 8:35 PM (GMT -7)   
Hi Beth, I'm so sorry, I agree withkayakmom a venting post is fine.

Its really important to get the feelings out.

And we are hear to listen.

donna

BethandCraig
New Member


Date Joined Oct 2004
Total Posts : 3
   Posted 2/5/2005 1:01 AM (GMT -7)   
Thank you ladies. It's really nice to be able to post here. I don't post often, but quite often my questions are answered in someone else's post so I don't need to. I realise that stewing about things and wondering "what if" really isn't going to fix anything, sometimes I can't help but wonder. I asked my dh about the keto diet and he said IF it's going to work, it usually has to be done in childhood and that's one reason I'm so angry because there could have been a chance I'd be seizure free now. It would have been worth trying. Yes my dh does love me to death and even with all his knowledge and experience, we still can't get these darned seizures under control. The neuro is at a loss and says if that many drugs failed the chances of any others working is slim to none.
 
Ok, I'm done venting now. Sorry. I'm just going to be happy that SOMEONE finally caught on or realised the truth and I'm still alive. Maybe they'll have a miracle drug out soon. LOL thanks again for the support ladies. I truly appreciate it.
 
Beth

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 2/5/2005 5:37 AM (GMT -7)   
Beth, you might do a search on Keto and Atkins. John's Hopkins and Mass General Hospital are finding that Adults have about the same chance for success as children!! Down side is you cannot stay on it forever with potential for high cholesterol etc. 1/3 have success with keto and seizures are controlled, 1/3 have a decrease in seizures but may not gain control, 1/3 are not helped. THis is a quote from Dr Elizabeth Thiele of Mass General speaking at a conferance where I also spoke. She is a Pede neuro, but was also mentioning this finding.

Yes, we still all hope for that miracle drug or for the doctor to find you the best combo!! Have you looked into VNS?



best wishes! Reading is always fine too. Know I care and wish you all the best!

try2bhappy
Regular Member


Date Joined Nov 2004
Total Posts : 163
   Posted 2/5/2005 6:36 AM (GMT -7)   
Beth I am so sorry for what you have gone through. But it does not help yor stress level to go back in the past and think if only. Been there tried that. You can only go forward now with your husband and see what can be done. This is the best forum for venting. Vent any time. Mary

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 2/5/2005 10:29 AM (GMT -7)   
(((((((((((((Beth))))))))))))))))))
I am just sending you hugs and want you to know you can vent here or to me anytime you need to... Tracy
 


Phoebe
Regular Member


Date Joined May 2004
Total Posts : 21
   Posted 2/5/2005 11:33 AM (GMT -7)   
I relived a little of my own story when I read yours. I was a child too and was wetting the bed every night non stop. That continued into adulthood until I tried one AED, Depakote. It seems that if a doctor has a child who is having problems that he would get right in there and seek out the best care. Mine didn't want to be involved. It is easier to deny there is a problem than to face it but it was my life that was affected like it was yours. My mother finally did take me to a neurologist who put me on Dilantin, but it didn't work. No other med changes and no more visits either. No blood levels drawn at all. I feel sure the neuro though my Dad would do the levels and whatever else I needed, but he was wrong. Their lack of involvement and my lack of knowledge did have a great impact on my life. I could go on, but I will end this for now by saying that I am thankful that you did finally meet someone who really knows what is going on and who really cares for you. I finally made it to the Epileptologist at a Comprehensive Epilepsy Center and had surgery 6 years ago. The 35 years between diagnosis and surgery was a chunk of my life basically wasted since I was not able to use my full potential during those years. I am now back in college at a much older age and have moved away from my "family". I joined AlAnon since my mother was an alcoholic and have another group of people who care as much as my relatives do with out the blood obligation and without the strings. At least I trust them. I still have a very long way to go, but at least I am trying to enjoy the trip. I am moving forward and am trying very hard to discover and reach my real potential. I just wish I had the years back, but that not being possible I will try to stay in the moment and enjoy today. It is very much like starting over but at a much older age. I understand the anger and frustration you feel. Believe me. We are not the only ones either. Have you looked into the VNS or sought a second opinion re surgery? I had to go to a second Comprehensive Epilepsy Center before I got the care I needed. I hope you find the right doc. Food for thought: I also want to point out that some close friends and family can get very used to and comfrotable having a "sick" person in their midst and will not want that to change due to their own codependence as well as the control it gbrings for them. I know parents like that. Many healthcare workers are like that. That is my field. It is your life. You take it and run with it. You can do this on your own, but it is great to have support. There is definitely hope, but you have to do some footwork and find it. That is a big part of the positive gains that come from having Epilepsy or any other chronic illness. What is your diagnosis? Phoebe

Post Edited (Phoebe) : 2/5/2005 3:46:42 PM (GMT-7)


BethandCraig
New Member


Date Joined Oct 2004
Total Posts : 3
   Posted 2/5/2005 10:13 PM (GMT -7)   

Thanks Ladies for your support. Jen, it's good to see you too! Yes, we are back home and caring for our son. We are also 15 weeks pg with our second. Ihave trouble makingit to chat dueto the time change and I forget. Oneof these days I'll make it.

My husband has said he's seen many people with VNS and it rarelyworks so we kind of ruled that out. We'll see.

One thing that upsets me is the new E drug that just came out pobably won't be available here for a long time and dh thinks it would be great for me. We can order it overseasbut it's way too expensive so that's not going to work unless we win lottery. LOL

Oh well, I'll try to post more often these days. I do read at least once a day if not more, but either find theanswer to my question from another post or just don't get time to do it.

Anyway thanks again ladies.

Beth


Phoebe
Regular Member


Date Joined May 2004
Total Posts : 21
   Posted 2/5/2005 11:31 PM (GMT -7)   
There are lots of people who have done really well with the VNS. They go about their lives so they do not post on boards like this. I would hate to see you stop and not seek proper care. Until you see an Epileptologist, you have not gotten where you need to be. Unless your fiance/friend is an Epileptologist, you are giving away control of your life. It is your life, your brain, as well as our health. It is also your choice. No one elses. I wish you well. Phoebe

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 2/7/2005 11:35 AM (GMT -7)   
Beth,
 
I'm glad to hear that my story inspired you to tell yours.
It's unfortunate that you had to go through that.
This only goes to show that more awareness is needed in this area and parents should be more aware and know the signs to be looking for cuz it still happens way too much and now, maybe people can be more open about it and not fear ridicule or humiliation, after all, it's only a condition that can be controlled with meds.
 
When you think about it, it's just like all those people out there with athsma or diabetes.
 
My mother never said anything to me and I didn't find out til I was 45 yrs. old that epilepsy runs in the family, my uncle had it (or at least it was suspected but went undiagnosed) because in those days you didn't want anybody to know if a family member had it or they would be ridiculed or thought to be possessed by the devil.
 
Randy (Ontario)
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day


Pumpkin2
Regular Member


Date Joined Oct 2004
Total Posts : 28
   Posted 2/9/2005 4:50 PM (GMT -7)   
My son is doing well with the VNS, he had no life
exactly. NOw he has some.

Can I ask what drug just came out there.

donna

AmandaJane
Regular Member


Date Joined Feb 2005
Total Posts : 30
   Posted 2/12/2005 6:21 PM (GMT -7)   

It's so good to know you're not alone...that's how I felt when I read your story.  I went through a very similar lifestyle.  For all of my life, from what I remember, I have had a few moments of a very intense deja vu, where I know what is going to happen.  I know what people are going to say...it's a pretty intense altering of concious.  I always told my mom "it's doing it again."  We never really seeked out medical attention for it.  After I graduated college in 1999, and went into the world alone, I got insurance and decided it was time to look into this a bit more.  None of the doctor's I went to could give me any answers, except that it may be some sort of a seizure.  All of my exams and tests came back as normal.  The feelings continued.  In Oct of 2003 I had my first GrandMal seizure, the first of 8 in a year and a half period.  Of course, at this time I had no insurance, so I didn't pursue the doctor's on a very intense basis.  A few appointments and I was finished...with no answers.  I am now accepted into a program in my city that helps those with financial difficulties and no insurance get the medical attention they need.  I was just given my first appointment with a neurologist on the 21st of February!!!  Maybe now I can get some answers. 

Stay positive, stay happy...I know it's a hard thing to do, but you can.  Always remember, someone else is there with you.  I too am blessed with finding my soul mate who is as anxious as I am to find the source of the problem and treat it as naturally as possible.


Peace, Love and Happiness
AmandaJane

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