The "something new" i didnt expect...

[Rae1889]

Hi there everyone.
I just wanted to start out by saying that it took me a long time to find a forum where people sign on regularly. The other ones i found (while helpful by reading past posts) were ghost towns. Thanks!
Well My name is Rae, I am 20yrs old, and i am currently in the process of being diagnosed with something related to my seizures (heres hoping its epilepsy and not a tumor or something terminal) I'll Start from the beggining.
About 2 years ago i started having episodes of staring off into space. Sometime i would be mid sentence and just sorta stop talking and then click back a few seconds later and continue with what i was saying, though a little confused about the pause. I sometimes noticed after coming back that i felt strange, like i missed something.
Then they gradually started getting worse. More frequent and i started going to tuggiing at clothing or rubbing my face, or tapping my nose when i stared. I didnt think much of it. At the time i was just moving out on my own, working 3 jobs, and having those regular friend "dramas" so i chalked it up to being stressed and my brain needing a time out. This went on for a while. I got engaged 2 years ago this November.
Then we started the wedding planning and things took a turn for worse. I started fainting before i had these episodes and would lie on the floor open eyed and twitching my hands or bitingmy tounge. This was scary but i reluctantly decide that i didnt have time to be sick and didnt want to go get checked out.
I have now a far as 2 months ago believe i have convulsion seizures now, so on saturday the 12th i went to the doctor the first time. I relayed the story to him and he ordered blood tests and urine tests etc as usual. He even suggested i go to a psycologist (??) and told me to come back monday. So i did and while talking to him i had a staring/twitching episode. He was suddnely more concerned than before (more like he just decided to believe me and order a CT scan and an EEG (which i go for on Nov 26th.) im nervous as i have never been to anything like this. Im not sure what's going on and i have nobody to talk to. I have not even told my parents that i have considered this to be epilepsy. I will only tell them when i am diagnosed.
The doctor asked about family history with this and i told him my mum's side is nothing but my father was adopted so we dont know about his side. Now i wish we did.
Anyway i guess what i am trying to do here is find someplace where i am able to ask questions and get answers and make some friends who share the same experiances.
I get my results in 2 weeks and will keep this posted. Any insight or comments or suggestions are helpful. Im not sure what anything is so answers to the things in question marks would help. Why i would have that test or what it is.
Thanks again everyone.

 

[Rae1889]

i just realized how much of a ramble that was. i am really new to this whole concept and it freaks me right out and makes me feel so alone.

 

[Meetz1064]

Hi there

Rae. Welcome to CWE. I'm sure you're going to like it here. There's plenty of people to make friends with, and lots of information. So kick back, relax, have fun, and learn. The Library and the Kitchen are full of information, and the Padded Room is great for venting when you need to.

Mr B, our host, has built us an AWESOME home here....

Well, it sounds like you started out having some partial seizures there (staring in space, stopping midsentence)...those behaviors you mentioned are called automatisms (tugging at clothes, rubbing face).

The convulsions are, as you know, tonic clonics (also called grand mal) seizures. The ones in between could have been precursors that just weren't finishing, or possibly just myoclonics. It's hard to say.

I'd be talking to your parents, though. Perhaps there is more in your mom's family tree that you don't know about. There's been such a stigma over the years about E that many are reluctant to talk about it. And maybe your dad could find something out about his biological parents' family? Any support that your parents could give you would be great.

Try to make sure that the EEG you get is more than an hour long. Preferably AT LEAST 24 TO 48 HOURS. This provides the opportunity for sleeping and awake time, and if activity goes on during both times, then it can be recorded. EEGs are simply a "snapshot in time" of what's going on inside your brain, so if nothing goes on during the EEG, then nothing will be recorded. Keep in mind however, that just because you have a normal EEG doesn't mean that you don't have E. I had normal EEGs for over 40 years. And trust me, I still had (and have) E.

Take care.

Meetz
:rock:

 

[Rae1889]

Thanks that really helps.
I think the thing that i am worried about mostly is that with my experiance with hospitals, they have never diagnosed me with anything anytime i have gone. I had pains in my stomach and they told me a few times on different things that it was something then it was something else and i never got a straigth answer and there fore nothing to stop the other things like constant throat infections or frequent fever. so im just really afraid im going to get the run around again and they tell me nothing and i keep having seizures with no hope of them getting better with medication or other wise. I mean i can live with having the staring episodes those are no big deal anymore, but im worried im going to have more "movie" style seizures. The Grand mal kind

 

[Meetz1064]

Yes, but

even just the staring spells can be dangerous........especially if you're driving. Keep that in mind. I have to leave for a bit. But will be back in a while to post more.

 

[Rae1889]

I guess I havent thought of that. I do not have my full licence (beginners only) and here in Canada you have to be seizure free for 8 months in order to get your licence back. I have to renew mine in November and dont know if i should. I do not want to take the whole written part all over again. Can you still get Status with staring? I heard of that with convusive seizures but not with staring.

 

[moonchild1970]

Welcome! I am new here too. This is a great place!

I understand what you are going trough and what you mean about "run a round" DR's. I have just recently gotten diagnosed after having the run around since 1997!!! We are here for you if you need to talk. Alot of knowledgeable people here to, to answer your Q's.

 

[RobinN]

Hi Rae - Welcome

Something I learned (a bit late in the game) is that Epilepsy only means that you have had two or more unprovoked seizures. It is not a disease. You are having seizures for a reason. There is a CAUSE. Staying focused on finding that cause is your main goal now. The seizures are the symptom. There are medications that can SOMETIMES eliminate the symptoms, or make them less noticable, but the cause is still there.

Sometimes, like in my daughters case, the symptoms can be reduced or eliminated by making nutritional changes. Interesting fact is that many neurological disorders come to blossom due to GI problems. Sensitivity to foods, or consuming too many additives and chemicals can create neurological disorders.

Being that you are 20, and didn't mention any accidents or viral infections, I really suggest that you consider this strongly. You might be able to turn this around quicker than if you get on the merry-go-round of meds, and the brain learns to use seizures as a release mechanism.

My opinion ...

 

[moonchild1970]

That is a thought. I have Chronic mono- or Epstien Barr virus. Could that cause seizures?? Tested really high for it, yet do not have any antibodies to it.

 

[RobinN]

There are over 25 viruses known to cause seizures in people, many of which are chronic, latent and ubiquitous. These include Epstein Barr and a variety of herpes viruses, measles, mumps, and the Coxsackie virus, the guy who causes anything from mild, inapparent symptoms to severe illness. The latter is a clue and speaks to the spectrum of illness we experience, dictated greatly by the state of our health and immune system at the time of acquisition.

http://www.coping-with-epilepsy.com/forums/f22/food-intolerance-viruses-epilepsy-1315/

It is being discussed in other neurological forums that there is a connection between gut issues, viruses, and neurological disorders. The virus can lay dormant. Many can't seem to rid the body of the virus or heal the gut until heavy metal toxicity is reduced.
Many similar stories of current issues, and recovery.

Rebecca had mono last year. I do believe it lingers.
There are anti-viral therapies, but mostly done through alternative doctors or by the individual alone.

 

[Rae1889]

The only things that i can come up with that co-incide with my first episode is:
1) switch from the birthcontrol pill to the depo needle
2) I was hosing around with my friend and was pushing back and forth and he pushed as i went to run and trippped over some shoes in the hall and smashed my head into the wooden door frame and then the floor. I remember hitting the floor still in the middle of laughing and then blacked out. They told me i was out for about 3 hours and rigth after i quit laughing i shook for about 30 seconds. They thought i was crying.
3) I get strep throat/tonsilitis every 2 months or so and the doctors refuse to take them out as they dont get swollen enough to stop my breathing. Eating and talking yes, but breathing no. So they attempt to "save" the tonsils now.
4) I had a pretty big issue with drugs when i was younger. Mostly just weed but sometimes it was laced im sure.
5) I "forget" to breathe lots. a few times in class i remember listening to the teacher lecture and feel my face go hot and then i'd get really dizzy and confused then all of a sudden realized im not breathing and think its time i should. It was more like an "oh oops" sort of reaction more than an "OMG!" reaction. **holy cow, could these have been seizures!!!**

 

[RobinN]

www.dogtorj.com
www.stankurtz.com
www.danasview.net

a few that I have searched, along with many on Yahoo groups.

 

[alivenwell]

Hi! Welcome!

It sounds like stress is definitely a factor for the recent seizures. Stress management may help out.

Personally, I'd have the tonsils removed because they may be causing repeated infections and sleep apnea (stop breathing in sleep). It's a more serious surgery for adults, but it may drastically help other issues.

 

[Rae1889]

My doctor tried to tell me it was stress related too but i have been less stressed than ever since starting these episodes. Before i was figuring things out financially etc as stated before, Plus my jobs kept sucking royally in the sense that my managers were pretty corrupt. (ie: firing me for "questioning authoirty figures" because my manager said she didnt have time to train me but still managed to smoke a pack a day with roughly 5-10 mina a break. that's 250 minutes max of her smoking. When someone stole they kept their job.) No i have one job i love, no stress. I answer phone calls and enter data (no heavy lifting etc) and have wonderful people who care about whats happening to everyone. I am fiancially set with amazing credit and wedding planning was done 3 months ago because we knew what we wanted. But i found the "movie" style seizures (sorry i dont have any better terms for that yet) started after i was stress free and paying more attention to myself and relaxing. so i just seems to be getting worse as i leave it alone. I'm not even stressed about maybe having epilepsy or having another seizure. im nervous of what the results could be but i mostly forget about them until i have another.

 

[Meetz1064]

So, if I

had to place a bet, I'd go for the 2d option--the horsing around. However, the first option is also quite doable--it is a change in hormones, and that can also change your seizure threshold. The first 2 combined could really do the trick.

Regarding #3. A) Start taking some vitamin C to help boost your immune system, and if your doctor STILL doesn't listen to your requests to have the bloomin' things out.....GO DOCTOR SHOPPING. YOU know your body, and HE/SHE IS NOT GOD. YOU PAY THEIR SALARY.

#4. Mmmmm. Yes. Sometimes past drug use can come back to haunt you, sometimes not. Don't really know about this one. Some people use weed to stop their seizures.....

#5. Um yes, those probably WERE seizures....however, if you're falling ASLEEP for a few seconds and then suddenly waking up, that may be narcolepsy. You may want to have a sleep study scheduled, too.

Robin is quite right about the nutrition, she is one of our nutrition gurus around here.......I could only hope to know as much as she does. I am also a celiac patient, and use an even stricter form of the GARD diet. And yes, it DOES help with controlling my seizures.

Take care.

Meetz
:rock:

 

[Nakamova]

Hi Rae, welcome!

I got less stressed after I had my first seizures too. I had been stressed and tense for a year before I had them, and in a way the seizures were like a pressure-valve at the time. I'm a fairly relaxed person, and emotional stress doesn't seem to be a trigger. There are other triggers related to diet and sleep that probably play a greater role for me.

I just wanted to add that over 50% of epilepsy is "idiopathic" -- that is, there's never any clear origin or obvious genetic link. That doesn't mean there isn't a cause or trigger, just that at this point the science isn't there to pin it down in every case. It's worth getting some diagnosis and treatment, whether from meds, or from eliminating triggers, if only because untreated seizures can sometimes progress -- becoming more frequent or more intense over time.

Best,
Nakamova

 

[Rae1889]

I used to be a really strict vegetarian. (not vegan cuz i love cheese) and then stopped that when i was introduced to teh dreaded big mac. lol My fiance has a cousin who is a celiac and its so difficult. but his isnt seizures when he eats it, it is like anaphlaxis. I'm starting to think after my little epiphany there *grin* that i probably had those staring episodes for a while and they became more noticable and frequent after the head injury or the BC change....might explore that option with my doctor and the person who does the EEG. Thanks for that break down Meetz!

 

[Rae1889]

Hi Rae, welcome!
It's worth getting some diagnosis and treatment, whether from meds, or from eliminating triggers, if only because untreated seizures can sometimes progress -- becoming more frequent or more intense over time.

That could be possible too. Like i mentioned before with noticing myself not breathing in class could have been seizures and that wihout having them treated they could have progressed to what i have now. Or they became worse through my head onjury/BC change.

another question to ask my doctor. I have decided to start a journal with it too with help from the hubby-to-be. I'll write down everyday how i feel and if anything happens. Have him time the seizures and have him write down the specifics and then how i felt and acted after them. Mostly i get crazy exhausted and find myself in a deep sleep that doesnt actual rest me when i wake up but more like resets me. That and sometimes i wake up and not sure who my fiance is or where i am etc for a good 5-10 minutes. onder:

 

[Meetz1064]

a couple

of other things.

You may have an MRI---that wouldn't be surprising, and would be preferred. It would look for any physical abnormalities on/in your brain (bruises, scars and such) that may be the cause of the seizures. Also, don't be surprised to have bloodwork done.....especially if you're going to have your hormones checked. Progesterone is a natural anticonvulsant, so if your body is low in it, then getting some extra may help you out.

You have some really good ideas about what to put in your journal. I have a great list of what should go in one to help the docs even more if you want to see it. It's a bit long, but really worth it in the long run. Let me know if you want me to post it.

 

[Rae1889]

Please post. I dont want to miss a single thing. Im wanting this to end now. I waited and i shouldn't have but i cant change that now. I got bloodwork and stuff done already. results come in 2 weeks. That would help muchly muchly muchly muchly muchly muchly