Suddenly not considered psychogenic!

LJ-Bain

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Hello there!
I feel like my journey with seizures has officially begun although I have been struggling for four years. After an untreated sinus infection I was hospitalized with a facial grimace and convulsions.
They worked me up for everything from a stroke to breast cancer and because the EEG, CT and MRIs were clear they determined that I had conversion disorder even though I have a loving family, supportive and wonderful husband and no traumatic history.
I had just returned to work after my first child and they said it was stress and to not have anymore children.
The convulsions calmed down but never went away and I would have episodes from time to time. They always involved the right side of my face and weakness on the left side of my body with slurred speech that went away after 1/2 hr.
I now have 3 children and five months ago the episodes started coming on daily and generally 3 - 5 per day except now my whole face and head would nod off as if I was going to sleep after my facial grimace, vision blurring and then I would have some small convulsions all without losing consciousness.
Finally we have seen our 5th neurologist at an epilepsy clinic and for the first time ever I am on anti seizure rx! Keppra on a low dose 500mg twice daily to start. I still have seizures, especially connected with my menstrual cycle but they are reduced by 2/3rds!
I know this is going to be a long haul as they do more tests but I am hopeful!

I can only imagine that there may be a day that I am seizure free!
I am just soooooooo relieved that they aren't just saying I'm stressed anymore.

It's nice to have a forum to talk about this! Goodness knows my family has to deal with it enough!
 

Aaleayha

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I'm sorry you had to go through all that too. That's what they did to me for three years. They kept giving up and telling me "You aren't thinking correctly" and that it was all mental. I had stress, but not enough stress to make me convulse. Only my MD believed us when we told him it might be in my neck.

Luckily (and unluckily) they did another MRI last month... only this time it was of my neck. They found two bone spurs on my c3 vertebrae and that the space where the nerves go through is slowly narrowing every year and is starting to squeeze the nerves.

Hopefully you don't find anything like that BUT I hope you do find an answer. Don't give up hope... not ever! I stopped looking and then found my answer.

~ Aalea <3
 

LJ-Bain

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Thanks for sharing. It's so frustrating when people think you're just some stressed out woman not able to handle things. I mean people do get stressed out but they don't usually cause convulsions!
I keep on thinking that they have missed something with me too.
I'm sorry to hear about your MRI results! Can they do surgery on the bone spurs? Is it something you just have to deal with? Will it get worse? My goodness.
 

Aaleayha

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Thanks for sharing. It's so frustrating when people think you're just some stressed out woman not able to handle things. I mean people do get stressed out but they don't usually cause convulsions!
I keep on thinking that they have missed something with me too.
I'm sorry to hear about your MRI results! Can they do surgery on the bone spurs? Is it something you just have to deal with? Will it get worse? My goodness.
It is frustrating, specially when the "cause" they claim I have couldn't possibly be the reason. I've been going to a Psychologist for the past 19 years.... They don't think it's Psychogenic and neither did I. turns out it comes from a genetic disease called Degenerative Disc Disease.

Mine... it's complicated. They say the can do surgery to remove the bones spurs but they might grow back. Plus, my mom thinks that even though they remove the bone spurs... the nerve area is still shrinking and surgery won't be able to fix that. I'm sure it will get worse. It's been passed down to me but I seem to have the shortest end of the stick. My grandma has bone spurs from top to bottom but they never caused her much trouble. My mom broke her back due to the degeneration of her vertebrae. They fixed that immediately. But they don't want to do that with me. I don't have the money to pay them so I have to "wait a couple more years". He said he wanted me to be older... like that will do me any good. It'll be worse by then.

I have more then just seizures now because of it. Loss of function and mobility to my left side, my right side is starting to be affected and now my face has some nerve twitches. I can grasp things at times anymore. bah... sorry didn't mean to rant. :oops:
 

LJ-Bain

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Wow. What a terriblel thing to have passed down to you and for it to unluckily localize at your neck where there are so many nerves.
I know what it's like for seizures to totally occupy your days and thoughts. I have had days when I've clustered so frequently that I just have to stay in bed.
I have 3 children under the age of 6yrs so they have quickly learned how to be independant.
Your future doesn't sound like it's going to be a walk in the park as you adjust to nerve damage as well as seizures.
You are stronger than you realize. I firmly believe we aren't given anything we can't handle. It just doesn't mean that it's going to be easy.
 

Aaleayha

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My future never sounded like a walk in the park... not even at birth. I've had nothing but medical problems. Yeah, it sucks have the short end of the stick. Right now they are sort of controlled but without medicine a normal day is 4-12 seizures. The worst I've had is 30 seizures in a 24 period.
I'm sorry your children have to go through this with you. I wish my mom didn't have to worry about me either. Specially since she's paying for everything. I mean EVERYTHING. I have to be strong or else I'll would wind up in a mental hospital. Besides I have my art and Chinese lessons to keep my thoughts occupied.
 

Nakamova

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Hi LJ-Bain, welcome to CWE!

Your seizures sound like they may be related to fluctuations in estrogen. I hope the Keppra works out, but if it doesn't, you might want to ask about treatment with progesterone cream.

Best,
Nakamova
 

Sarrita

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Hi. I'm glad to hear they Finally put you on AED's! It's frustrating & irritating when the Dr.'s don't take you serriously! Sorry, it took so long for them to come around. I know I am irritated with my nuerologist. The last 2 times I've seen him, he hasn't really paid attention to what I've been telling him. I notified him that I am allergic to the generic, (Lamatrogine) & that I can only take the brand name, (Lamictal) without having severe adverse reactions, ie: virtigo-things keep moving on you/dizziness, & vomiting. Now, I've been off my Lamictal for about a week, because my insurrance Won't cover the Brand name, without the Dr. putting in a special request with my insurance! I hope he gets the request in & pushed through today! Before!, my siezures act up... I already had an aura that lasted about an hour 2 days ago. I Really, will be upset if I have a generalized siezure after going 4 yrs. without one! I've only had them since I was born & I'm "Well," out of my school years!; to give you an idea on how long I waited for them to be controled. My point though, is, never lose hope for your siezures to be controled; Siezure disorders always have surprisses. Yes, I mean the good ones!
 

LJ-Bain

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Thanks Sarrita for the final words of optimism and hope!
I know what you mean about neurologists not taking you seriously...it's like they only half listen and only perk up for certain key words.
I didn't know that there could be such a difference with brand name and generic but it makes sense. That sucks that your insurance won't cover the brand name either. So much all comes down to money.
That's awesome going on 4 yrs without a generalized! Not so awesome about the 2hr aura...sometimes I find when auras go on for so long I just wish for my partial to occur. Like a good sneeze. Or scratching an itch.
 

Sarrita

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Hi, how are things? I'm sorry it has taken so, long for me to respond. I understand fully what you meen by, LONG Auras that seem to last forever, or are happening back to back: every 30 sec. or so. I agree! When the aura(s), get like that!, I think, "Well, if I'm going to have a siezure, I wish it would just happen & get it over with! If Not, I wish it would just stop & go away!"

Keep a "stiiff," upper lip, though. You haven't lost the battle of having your siezures controled, though. They Don't Win!; Unless, YOU Give Up!!... So, Never!, give up, & They'll NEVER Win.



Take Care,
Sarrrita
 

Sarrita

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"Right On!!" Finally! Somebody!, listens. "

:clap:
Hello there!
I feel like my journey with seizures has officially begun although I have been struggling for four years. After an untreated sinus infection I was hospitalized with a facial grimace and convulsions.
They worked me up for everything from a stroke to breast cancer and because the EEG, CT and MRIs were clear they determined that I had conversion disorder even though I have a loving family, supportive and wonderful husband and no traumatic history.
I had just returned to work after my first child and they said it was stress and to not have anymore children.
The convulsions calmed down but never went away and I would have episodes from time to time. They always involved the right side of my face and weakness on the left side of my body with slurred speech that went away after 1/2 hr.
I now have 3 children and five months ago the episodes started coming on daily and generally 3 - 5 per day except now my whole face and head would nod off as if I was going to sleep after my facial grimace, vision blurring and then I would have some small convulsions all without losing consciousness.
Finally we have seen our 5th neurologist at an epilepsy clinic and for the first time ever I am on anti seizure rx! Keppra on a low dose 500mg twice daily to start. I still have seizures, especially connected with my menstrual cycle but they are reduced by 2/3rds!
I know this is going to be a long haul as they do more tests but I am hopeful!

I can only imagine that there may be a day that I am seizure free!
I am just soooooooo relieved that they aren't just saying I'm stressed anymore.

It's nice to have a forum to talk about this! Goodness knows my family has to deal with it enough!
:clap::clap:
 

JLogefeil

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That's good news!
My doc just upped my dose of Keppra, I was on 1,000mg a day now I'm taking 1,500mg a day.
The side effects are hard and not the greatest but mine got a lot better, but then of course the just uped my dose.
You might want to worn your friends and family you might be or become very irritable for no reason and it's the Keppra not you.
So what are they planing on doing now?
 

LJ-Bain

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Hey there. This was my very first thread (I think) I ever started way back in March! I have been on such a journey over the past 5 - 6 months. I was so hopeful that my problems had been solved then but it has been a case of 1 step forward and 2 steps back.
Just yesterday I posted about them thinking I have seizures that start in my brain stem.
The future is still unclear but I am hopeful once again.
 
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Thank you for bumping this thread, it was helpful for me.

I'm so sorry that you're still having problems. :( (((hugs)))
 

roseycoe

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Hi Sarrita
Sorry I have been off forums for a while but lots of doctors appointments and email got goofed up. I hope everyone is doing well. I am still new here also. I am curious about your vertigo problem. Is verigo a side affect of Lamatrogine and an allergic reaction? I was also on this medication and had problems with vertigo so they took me off of this medication and put me on oxcarbazepin and added gabapentin last month. I am doing really well with no auras or seizures since the end of June but still have vertigo off and on. My doctors also thought maybe they were a side effect of medication but they do not always happen after I take the medication. So now they are not sure. When do you get your vertigo is it right shortly after your meds or does it happen randomly like mine. I am just curious to see if mine really could be a side effect. I am hoping not because I am doing so well with no seizures so far.
 

Sarrita

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I experince vertigo, Immediately!, or Shortly after!, I take the med. if I'm allergic to it. Therefore, they need to stop the med.
Some people may experience it, if their med. level is too high. Therefore, it may, only need to be adjusted.
Since, you only, experience vertigo, priodically, or from time to time; I would agree withyour doctor, & look for other causes, as well.

Remember!, you're Not in this fight alone! We're all here! You are in my prayers!, & as Grandma would say, 'Keep A Stiff Upper Lip!'

"One Day At A Time!"
 
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No doctor, me or any family member knew I had epilepsy until I had grand mal. Many years past before I had an "episode" and then I they realized this contained events were temporal epilepsy. Now they think it might be even more. So, I am really glad you don't have to go through through the mystery of things. I wish for the day you can be seizure free as well! Stay hopeful. Never give up, that can not be an option. I told myself at the age of 16, "something is physically wrong with me." I always knew. I just lived my life, then it caught up to me and forced me and everyone around me to identify that I wasn't just "depressed." I felt really angry at first, that all along I was misdiagnosed, and when I had problems while I was stable, I could have avoided them if I knew it was epilepsy. Though, life works is such strange ways. I am at peace knowing my day might come, when I reclaim my life to the extent I want. Keep yourself at peace as well, stay strong!
 

Sarrita

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Sorry, you were misdiagnosed for so long. I think Dr.s' sometimes need to, STOP & 'Take stock,' in what you are telling them; instead of dismissive &/or complacent.


GOD Bless!
 
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roseycoe

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Hi Sarrita and MuayThaiFighter
Thank you both for the support. I am glad that I was blessed with knowing what I had young but now the problem is finding a neurologist that will listen to what I am saying. Unfortunately for those of us that do not have seizure activity every minute or so to pick up on an eeg we get shot down with misdiagnosis. I am a little scared because I wish I knew what was wrong with me. I have been documenting things that I and am finding strange like my body temperature is running a little low usually between 96.5 and 97.4 and my blood pressure is also a little low at times like if I get upset rather than going up it goes down. Not enough to be concerned with but enough that I am keeping track of it because this is not normal for me. I just hope they find something soon because I just got told I have to go on social security disability and I don't know how hard that will take to fight for. My family doctor still thinks these problems could be tied into my complex partial seizures because they do not know enough about it yet.
 
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