Impending doom seizure?

[majier]

While my grand-mal seizures happen during my sleep, leaving my with no recollection of them, they are not frequent. I have simple partials 2-5 times a day- visual disturbances... Lately I've noticed that every time I close my eyes, be it to sleep, or just put my head back and rest for a few seconds, my eyes twitch like crazy. Eventually they turn into spasms and my whole face begins to move.
After running yesterday (I run 5 or 6KM daily) I felt more tired than usual and just went to lay down in bed and close my eyes. My eyes began to twitch and finally resulted into a facial spasm, I couldn't fall asleep, I was so aware what was happening that I couldn't relax. Eyes closed, but still awake, I heard everything that was going on in the other room. All of a sudden, and it's very hard to explain, everything moved into black. I felt scared, something was coming and was creeping up on me--impending doom. I started to hyperventilate short gasp breaths and my body began to shake (not clonic-tonic shakes, but shakes). I heard my boyfriend rush into the room, "Erin, Erin! Can you hear me? Are you okay?" But I couldn't respond, I was fully aware of what was happening, but I couldn't snap out of it. Unable to open my eyes, I was drooling and started to let out massive sobs, screamy sobs, and slowly got the final shakes and breaths out of me. It took me maybe 5 minutes to be able to open my eyes again and breath normally.

After reassuring my boyfriend that I was okay, I closed my eyes and went into it again... shorter this time.. maybe 2 minutes, but hyperventilating, facial spasms and sobs.

My eyes continued to twitch or blink for maybe 30 minutes afterwards.

I'm assuming this is some kind of seizure, but not one I have ever experienced. Have any of you out there had one similar to this? What is it called?

I had a second MRI in the period of 5 days on Tuesday and even while I was in the tube my face was going out of control! I feel like it's getting worse. What the jeepers is going on??

Thanks

Erin

 

[Stephen]

So very familiar mate. These things are so off the wall and hard to descibe to others that you think you must be mental eh?

You just described my simple partials to a tee. So difficult getting this stuff understood. Especially whrn you dont understand yourself. Its a journey of discovery and one you dont need to make alone. Glad you have someone there to help you along. We can help also...if not just to let you know that you are not going mad. Education is key. Learnjng and comjng to terms with what is happening is pivotal for not only you but for those folk around you.

Keep your chin up. The feeling of impending doom or dread is not nice but neither us it real.

Regards

Stevo.

 

[Nakamova]

I agree with Stephen, it sounds like a simple partial. The sense of dread is a classic symptom of them. Because you couldn't fully respond, it may have progressed to being a complex partial seizure (which features impaired consciousness, and automatic behaviors like drooling).

It may be that your running is playing a role in triggering your symptoms. Make sure you are getting proper water and nutrition before, during and after your exercising. (Stay away from energy drinks with caffeine or other stimulants). And it's very important to "warm down" your muscles and breathing at the end of any period of exertion. A good technique is breathing from the diaphragm, with longer exhales than inhales.

Fatigue and magnesium deficiency can also lower seizure threshold, and cause twitching in particular. You may want to add a magnesium supplement once or twice a day to see if it helps.

 

[majier]

Thanks everyone... I actually spoke with my neuro yesterday and it turns out I have a tumour in my right temporal lobe

I meet with my new neurosurgeon Friday to discuss the plan of action.

 

[Nakamova]

So sorry to hear that. Hugs to you and lots of healing wishes for what lies ahead.

 

[Stephen]

So sorry you got that news. Recovery plan now kicks in. Diagnostics are done. You have a journey now to wellness that you must travel. Medics family and friends will help you in this.Dont forget that night is darkest just before the dawn. Xxxxxxxx

 

[nicholas:)]

familiar too!
Seizures under control at moment

 

[jyearta]

Thanks everyone... I actually spoke with my neuro yesterday and it turns out I have a tumour in my right temporal lobe

I meet with my new neurosurgeon Friday to discuss the plan of action.

Sorry to hear this news, are your Dr. talking how they are going to treat the tumor?

Prayer and HUGS send your way.

 

[Neuromancer]

Tumor shtumor

You're holding your beer in your right hand, so i'm assuming you're right handed? If so you're in luck. You can spare up to 6cm of your nondominant (right side if you are right handed 92.5% to 98.8% of the time, depending which study you look at) temporal lobe without messing with your language or memory. On your dominant side, 4cm of the temporal lobe is expendable. Some cowboy surgeons don't even do a WADA on righties with right temporal lobe tumors and just go for it.

You'll do fine. They've been doing this surgery since the 80s, and in residency this is the first kind of epilepsy surgery that they do. They will put you out and scoop out your tumor, you'll wake up in the icu, stay there overnight, go to a floor room and spend 3 days there, and you'll be on your merry way with a 80-90% chance of being cured forever.

But it will be not fun at all for 3-4 days to poo or open your mouth wide. Learn to love soup. The first cut goes through your temporalis muscle, which is involved in opening your jaw. And pooing raises your intracranial pressure, so your bone gets pushed out and hurts like an MF. It will get better. And the kinda weirdish offish feeling that you will have the first week or so post-op; that is the anesthesia making its way out of your brain. It will go away.

 

[Stephen]

Good Lord Neuromancer..

Is that an attempt at support. ???
This girl needs more than your silly prognotic avenue of wisdom. Whilst i am sure you are well gen'd up. And well meaning..You must appreciate that ....sometimes....less is more.

I am a radiographer and this language is great when you are in the know but percentages means squat to me and my fellow board members when they are finding their feet And are overwhelmed with questions..

I bow to your knowledge but timing is key my friend.

Imagine how Maijer is feeling.
Try mate try.

 

[CQ:)]

Majier,
So sorry to hear about the tumor. Good luck with your appt with the neurosurgeon.

 

[majier]

Thanks everyone.
I can't begin to explain how much all of this support means. I guess I'm taking this tumour as an answer to all of the experiences I've had that I was unable to describe. As terrible as it is to say, I'm at peace with knowing this was the tumours behaviour and not a reflection of my own. I'm looking forward to meeting with my neurosurgeon and looking this thing in it's "face"- confront my enemy, so to speak. Anyone have any experience in brain biopsies?

You're all wonderful
-Erin

 

[nicholas:)]

Majier, good thinking! We will support you! Thoughts with you

 

[jyearta]

You have such a awesome attitude, it makes me ashamed of myself.

Keep that attitude, and know we are all here praying for you..:hugs:

 

[Zolt]

Hi Erin,

Nothing worse in the world than being told you have a brain tumor, i for one know. I had a grand mal at work followed by a tremendous headace. I went into the ER and they ran the usual tests, then they finally did a CT scan and found my tumor, the size of a baseball on my Parietal and some on my frontal lobe. They didn't do a biopsy on it since they knew it had to come out right away otherwise i may go into a coma. Well they made room for me to have surgery in 2 days time. I went into the ER Monday at 4pm and had surgery Wed and left the hospital Sat morning.

They did cut my temporalis muscle, but i was still able to eat regular food, just wasn't able to chew very well. Maybe yours is small enough that you don't need surgery, i think if the size of a tumor is below 2.5cm then Radiation like gamma knife can be done. If you do need surgery, its not fun, but a lot of people have gone through it. I just hope your is not cancerous. Mine was on the fence, couldn't decide if it wanted to be cancerous or not, so they called it a Type II. I go for Mri's regularly and after 7 yrs, the tumor has not returned. My worst problem was the steroids (decandron) they gave for swelling, it was like drinking 10 cups of coffee. i could only get like 2 hrs of sleep at nights during my recovery period while on the steroids. Highly recommend asking for a sleep aid while on that. And yes, all my problems i had experienced before hand were related to the tumor. My only problem is that because of it, i now have seizures in may right arm normally, only once had i had a grand mall since.

Good luck and if you have any questions, ask away.

Cheers,
Zolt

 

[majier]

Thanks so much Zolt! I have a medium sized tumour- over 2.5 cm. I've spoken to my neurosurgeon and I'll be having a temporal craniotomy in the next few weeks. It has to come as soon as possible. He's not doing a biopsy due to this reason. I'll find out if it's cancerous or not afterwards. All he was able to tell me is that it is an aggressive tumour.
He told me I'm looking at 2 months recovery at least. It's a lot to take in... it's hard to digest all this, but I'm staying confident and positive

 

[majier]

To shave or not to shave? Hm... Can I rock a half head of hair? Should I just get out the whipper snipper and take it all off? What do we think guys and gals?

Always appreciating the support here at CWE!

 

[Zolt]

I know what you mean, i was like in a dazy when they told me about it. I had no understanding what was going to happen to me. I was alone and in the ER when the doc told me what i had. All i said was get it out of me as soon as humanly possible. I knew i was in a big city where these types of surgeries were common, i hoped. I just put my faith in the doctors and let them do what they get paid to do. Other than the sleep issue, the recovery went smooth. I went totally bald at that time, didn't want my hair to get in the way, plus i have good hair and knew it would grow back. I had no pain, didn't take any of the pain pills they gave me. I didn't sleep on my left side for the entire recovery period, i tried to do everything possible to avoid any damage to that side of my head. I had 44 stitches in the shape of a horseshoe and looked like frankenstein when i left the hospital. It was great fun going to the supermarkets. I would make little grunting noises when children would stare. It reminded me of scenes from Scoobie doo.

When i first met the surgeon, she was telling what i had and what was going to be done, etc... All went in one ear and out the other, for at that time i had no idea what i will be going through. At the time i didn't even know the difference between a faint spell and a grand mal. I hadn't been in a hospital since i was like 6 yrs old, when i fell out of the passenger door of the truck my mom was driving and landed on my head. This was the days before seat belt laws and child seat laws. But that is a totally different story. After the surgery all i did was read up on my type of tumor, which was a Meningioma, one of the better tumors for survival rates.

Another thing i did was to get all the communications/reports about my surgery so i could look at it and see what happened. I loved looking up all the fancy words they used and eventually everything made sense, even the reasons why I have seizures now.

Wishing you the best. Nothing better to do then to be positive, worrying never makes things better, on the contrary it only makes things worse.

Remember what will be will be, God sees to that.

Cheers,
Zolt

 

[CQ:)]

I have a medium sized tumour- over 2.5 cm. I've spoken to my neurosurgeon and I'll be having a temporal craniotomy in the next few weeks. It has to come as soon as possible. He's not doing a biopsy due to this reason. I'll find out if it's cancerous or not afterwards. All he was able to tell me is that it is an aggressive tumour.
He told me I'm looking at 2 months recovery at least. It's a lot to take in... it's hard to digest all this, but I'm staying confident and positive

Good luck with your surgery, hope it goes well & the tumor isn't cancerous.

To shave or not to shave? Hm... Can I rock a half head of hair? Should I just get out the whipper snipper and take it all off? What do we think guys and gals?

It depends on where in your brain you have the surgery as to whether the surgeons shave much of your hair.
I had brain surgery in March 2011 which was on my left temporal lobe. I was told that my hair would be shaved right on my hairline so I didn't need to shave my hair. When I went in to have the surgery my hair was below my shoulders & the surgeons did shave right near the hairline so I could easily cover the scarring.

When I had my surgery I had 22 staples in my head (that's not much compared to Zolts 44 staples lol) & my scar goes from above the centre of my left eyebrow down just below my left ear.

Here is a pic of my scarring 2 weeks post surgery.