Please help

[micncar]

I am new to the group. I wrote a post earlier today, but didn't give detail about my symptoms because i was to out of it. I've had symptoms for yrs, but just resently the symptoms have become more intense. I have episodes where my body starts tingling. I'll get very tired and confused and feel i get lost in my own house. I'm walking around in a spacy fog like i'm drunk. I'll get severe headaches which get bad, then better, then intense again. My cognitive ablilities are affected as well. At times I can't explain what i'm trying to say and other times i can't find words. I've struggled with similar symptoms for yrs, but now the symptoms aredisabling. I have a hard time helping my 10 yr old with her homework. I have had 2 episodes where my daughter came into the room and i was on the floor. I remember feeling weird and tired. I come to with my husband trying to get my attention, but i don't remember anything prior. My daughter was crying cause i wasn't making sense and it scared her. I don't remember any of this. Today has been a bad day and i'm having a hard time typing this. I had an 72 hr EEG which was read as normal, it just had XL spikes and events. Neuro said normal but she only looked at report, not EEG readings. I feel lost. My husband doesn't believe it could be seizure cuz 72hr report states normal. Does this sound like seizures? My daughter has epilepsy, which is under control. I don't know if i should let it go, or get another opinon. If i choose to get another opinon, where can i find a good neuro. I'm so frustrated and feel like i'm to out of it and in pain to fight for myself. I'm sorry this is so long. Thank you so much for reading this. I appreciate any opinons or suggestions. Thanks

 

[momof3boys]

I am new to the group. I wrote a post earlier today, but didn't give detail about my symptoms because i was to out of it. I've had symptoms for yrs, but just resently the symptoms have become more intense. I have episodes where my body starts tingling. I'll get very tired and confused and feel i get lost in my own house. I'm walking around in a spacy fog like i'm drunk. I'll get severe headaches which get bad, then better, then intense again. My cognitive ablilities are affected as well. At times I can't explain what i'm trying to say and other times i can't find words. I've struggled with similar symptoms for yrs, but now the symptoms aredisabling. I have a hard time helping my 10 yr old with her homework. I have had 2 episodes where my daughter came into the room and i was on the floor. I remember feeling weird and tired. I come to with my husband trying to get my attention, but i don't remember anything prior. My daughter was crying cause i wasn't making sense and it scared her. I don't remember any of this. Today has been a bad day and i'm having a hard time typing this. I had an 72 hr EEG which was read as normal, it just had XL spikes and events. Neuro said normal but she only looked at report, not EEG readings. I feel lost. My husband doesn't believe it could be seizure cuz 72hr report states normal. Does this sound like seizures? My daughter has epilepsy, which is under control. I don't know if i should let it go, or get another opinon. If i choose to get another opinon, where can i find a good neuro. I'm so frustrated and feel like i'm to out of it and in pain to fight for myself. I'm sorry this is so long. Thank you so much for reading this. I appreciate any opinons or suggestions. Thanks

Everything that I highlited is what I have with my seizures. Last March I had my first VEEG and during that time, I was in the hospital for 5 days. They took me off all medications. On the second day, I started having simple partial seizures. They would start out with a feeling that something wasnt quite right. My heart would begin to race, I would get a feeling in the pit of my stomach that felt like I wanted to vomit, and then a feeling of fear or sadness would overcome me. On my left side, I would get tingling feelings, like a million needles were attacking me, that would start in my hand and foot and go all the way up my whole body to my face. My head would turn to the right and my body begins to stiffen and jerk. During all of this Im able to hear people talking to me, and I know whats going on, but due to the intense of the seizure, I wait til its over before responding to anyone. I recall one time I blacked out. I came to and the nurse was giving me medication to stop the seizures from coming in my IV. After the seizures, I have a very bad headache, I feel sluggish, and without energy, and just flat out tired. I had some seizures a couple of weeks ago in the middle of the night, and that next day I just wasnt myself. Very tired, and my body felt sore, probably from stiffening during the seizures. I had a terriable headache that lasted that day too.

I would for sure be going to get a second opinion. I hope others here can chime in and give their feedback too.

 

[micncar]

That sounds like me aside from the jerking, unless i don't realize it. I also cry a lot after. I don't seem to be recovering for long though. I used to have some good days, but lately note so much. More out of it drunk feeling, then not. Is it possible for 72hr eeg to miss episodes even though i felt some? Is there a DR in NJ that anyone can recommend? I only had one eeg aside from sleep studies. Thank you Kristin for responding and sharing.

 

[Nakamova]

Hi micncar, welcome!

It's absolutely possible for an EEG to miss stuff. Many people with epilepsy never have a positive EEG. Their seizures or symptoms can be too transitory, or originate too deep in the brain to show up. Given the symptoms you describe, plus a possible genetic predisposition, I think that epilepsy is a reasonable diagnosis, and that it's definitely worth getting another opinion. If you're ending up on the floor without knowing how you got there, it's pretty important that you get some answers.

Best,
Nakamova

 

[micncar]

Thank you for helping me Nakamova. I'm feeling that is what i need to do as well. I need to research a good Doc. I really need to find help. Thanks again

 

[RobinN]

Good luck with your research. Finding support is essential.
Even if your EEG is "normal" you have a medical condition that is making it difficult to cope with your daily activities. I suggest that you work very hard to find answers. Keep a journal. You might not see why this is necessary now, but after a generous amount of time you will begin to see how helpful it can be.

 

[micncar]

Thank you Robin, I started my journal today. Thanks so much for the great advise. I might share some of it later, if i feel better. Tough morning so far. Thanks for helping me

 

[Endless]

Mincar,

I'm so sorry you are going through all this. I think the time before a firm diagnosis is even harder than after.

Half the people with seizures have a negative EEG so what you experience is a common thing. It can depend on where your seizures are originating from. your neurologist should be able to guess at this based on your symptoms.

Did your neurologist say the diagnosis is not seizures? Does your husband go to your appointments with you? In any case, a second opinion is always a good idea. If your husband doesn't believe what the doctors are saying have him come along to an appointment, to hear the doctor and ask questions, and also to help you remember what the doctor says.

Is your neurologist doing a complete workup, to screen for other neurological problems, and your PCP is testing for other physical things? There are a lot of diseases that mimic epilepsy.

Keeping a journal is a wise step. It will help your doctors make a diagnosis and it may uncover patterns for you, like after you do something, skip meals, are exposed to something, etc. Here's a resource for seizure journals:

http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

 

[micncar]

Hi Endless, Thank you for replying. The neuro that ordered the 72 hr EEG, looked at the written report, which was only peliminary when i went to see her, said she didn't think it was seizure. Initially, she said she was going to do 72 hr eeg and if that didn't show anything she wanted to do video eeg in hospital. She was very compassionate during initial consult, but 2nd i felt rushed out, and got " see you in 3 months". I was to confused to even get into what she had said initially. I've had other dx. I have chiari malformation and also was dx with narcolepsy back in 1995, but could never really tolerate the meds, which are stimulants. I never researched seizures cuz i thought, if i had them they would have shown on sleep studies i've had. Like i sad, i've had symptoms for yrs, but never had tingling throught my whole body. I've had episodes of confusion in the past, but never like this. I have passed out yrs ago, but now, when it happens i'm awake, and just feel like i lose time and feel drunk. I do get real sleepy before and after episodes, which could be narcolepsy, but narcolepsy doesn't explain the episodes and how they present. I don't fall asleep during these episodes. Tingling, usually starting in legs which moves upward to head and even lips; total confusion and then headache from back to front. I also have very blurred vision. The Neuro did do blood work and mri's. 1 mri clear and another, cine mri is pending. Husband did go, but didn't say much. The neuro also told us that she would be able to determine by EEG, if i was going into rem during the day. I did ask her about this during 2nd consullt, and she said that the DR who reads the report won't comment on the sleep, because there is to much info on an EEG to weed out the sleep. She said EEG's are not used to r/o sleep disorders. I'm sorry this is so long. I'm looking for new DR. The cd has XL spikes and XL events. Don't know if that is normal, but when i look at normal EEG's online mine looks abnormal. Thank you for your help This group is so helpful.

 

[Endless]

Micnar,

If I understand correctly Chiari has some pretty strange symptoms that most doctors (even neurologists) don't recognize. Only a short list of the symptoms have been officially listed but many more exist. Do you belong to a Chiari online support forum? Asking them about your symptoms may have a surprising result. You may find you have company.

Chiari? Do you also have intracranial hypertension? Based on informal sources, people with intracranial hypertension seem to also have episodes that are either seizures or look like simple partial seizures. Not enough research has been done to have a good list of symptoms so the doctors are in the dark.

Chiari and IH are so rare most neurologists just don't know how it affects the brain and body. If you feel you are at the end of your rope going to a nationally recognized Chiari center might help get a handle on things. If you do go you may have to travel. Here's one that's supposed to be very good:
http://www.wichiaricenter.org/

I'm crossing my fingers for you. Please feel better soon.

 

[micncar]

Update

Hello Everyone, Just wanted to stop by and let you guys know that i consulted with a epilepsy DR. I'm going to be going in the hos for a VEEG, mid March.. any tips on what i should bring or what i need to know before going in? The DR thinks i should definitely have this done. It might not be the cause of my symptoms, but i guess i should rule it out. Not looking foward to the 3-7 day say in the hos, but want to get to the bottom of what is causing my symptoms. Thanks to all of you for posting to my concerns.. I'll keep you updated. Any suggestions would be greatly appreciated

 

[momof3boys]

I had a VEEG done a year ago. I was admited on a monday morning and released friday. So i was there for five days. The first day wasnt that bad. My dr decided to "cold turkey" me on all medications. So my last dose of medications was the night before, sunday at 10pm. They basicly hooked me up when I got there. I got to wear some comfortable buttoned up pjs. They will want you to wear something that has buttons in the front, because one they put the wires on your head, there is no way to take them off til they release you. So make sure you pack clothing that can be taken off without it going over your h ead like a regular shirt can. I packed lots of comfy pj bottoms and sets that button up. They allowed my mom to stay over night with me. She was there all the time with me. You can take magazines, dvds, anything that will keep you busy. The hospital I went to, had a dvd player in the room, and a tv. I did bring some movies, but never watched them due to the seizures and being tired and out of it afterwords. They did have 24 hour room service. I could get whatever I wanted day or night. My mom could order her stuff, but that wasnt covered, so we paid for that on a debit card. It wasnt that much though. I did bring my laptop and got to use that. My mom enjoyed that during the time she was there. For the most part, I pretty much tried to relax and if I was up, I was mostly watching tv or on my laptop. I admit by the end of the second day, the days really got lost... I dont recall awhole lot after words, at least til I was released. As for bathroom breaks, anytime I needed to use the bathroom, I had to press the button and a nurse had to be in the room at all times. I wasnt allowed to get out of the bed without a nurse being in the room. The nurses wanted to be in the bathroom with me at all times, which made me too uncomfortable, so we convinced them to let my mom be in there with me. They just dont want you in the bathroom alone if you happen to have a seizure.

Its not that bad. But I was glad to me home after five days.

 

[CQ:)]

Hi micncar,

momof3boys pretty much summoned up what is involved with the Video EEG.

I'm not sure which country you are from & what the weather is like but make sure you take plenty of warm clothes (eg - buttoned down PJs, sweat pants, zipper down sweaters), especially for the night as you most likely won't be able to have a blanket or sheet over you while you're sleeping. Also take as much as you can to keep yourself occupied eg - books, magazines, games, craftwork & a laptop if you have one.

I had a Video EEG in November 2010 & I was connected to the EEG from Monday morning - Friday afternoon. It was almost summer here in Australia when I had my Video EEG so the days were warm but the nights were cooler. I wore 3/4 pants & 3/4 button down tops in the day time & flanalette Pyjamas or tracksuit pants & zip down sweat shirts at night. The hospital where I had my Video EEG prefer if you have a carer with you (eg- family member, partner) who is familiar with your seizures. I had my Mum with me when I had my Video EEG as she knows what my seizures are like better then anyone else.

My Mum & I didn't get to bored because we hired the tv for the week plus we took plenty to keep ourselves occupied (games, puzzle books, I was texting to my friends a lot on my mobile & Mum has a kindle). I found the days busy because each day I had drs, epitiologist, neuropsychs, students come in to see me. I found the nights were very boring & dragged as because over tiredness is one of my main trigger I was sleep depriving myself, usually only sleeping approx 2 - 3 each night.

The epitiologists didn't want to reduce my meds too fast & reduced my meds every couple of days as they only wanted to try to bring on a complex partial seizure & not a tonic clonic.

Good luck with your Video EEG

 

[CQ:)]

As for bathroom breaks, anytime I needed to use the bathroom, I had to press the button and a nurse had to be in the room at all times. I wasnt allowed to get out of the bed without a nurse being in the room. The nurses wanted to be in the bathroom with me at all times, which made me too uncomfortable, so we convinced them to let my mom be in there with me. They just dont want you in the bathroom alone if you happen to have a seizure.

Kristen,

When you had your VEEG, did you have to share a bathroom with other patients or did you have your own bathroom?

At the hospital where I had my VEEG there were 3 VEEG monitoring rooms, the 1st room had it's own bathroom with a shower & toilet & the other 2 monitoring rooms had to share a bathroom. I had the 1st monitoring room which had the ensuite.

I was able to go to the toilet on my own because it was only a few steps from where I had my chair ( big comfy chair that pushed out to a recliner). My Mum was able to use the shower but I had to have a sponge bath. Although when I did have a wash or got changed the nurses would cover the monitors & the curtains would be closed I still had to be in view of the video camera. I had to get my Mum to help me by washing my back & helping put my bra & top on. I didn't really like the sponge baths & was so glad when I was able to have a proper shower after the VEEG was finished lol.