trying to learn

[julie wishes]

onder: .... I have not found a new doctor yet, and I suspect its going to take a few weeks. In the mean time, I'm trying to figure out if I'm having seizures or not. I do have these spine injuries bulging disc c5-6 and bulging disc at L-S junction.

Known: I have difuse white spots on MRI and a positive EEG showing generalized seizure activity but no movements per video during this event.

I've suffered from what I used to call dizzy spells now more properly described as dizzy/ head pressury/ off feelings since the accident several times a day. As time went on 11 months now these feelings got worse. Body twitches. Twinges. Lots of jerks. Stomach convulsion type feeling. Hearing fades during some of these. I saw a green grey hue in the room once ( kids said no mom its not grey in here lol). I hear a buzzing sound in my sleep a lot. And many more things, i just cant rememeber now. Oh and severe low back pain.

Most of these things are associated with nighttime, but not always.

I never have Deja Vu or out of body feelings. But when these things happen I often describe them as tortuous. That's how uncomfortable I feel. In between these things I feel pretty normal, but there have been many times that it takes half a day or several days to come out of the foggy feeling they leave.

I was started on Keppra and to be honest, I loved how it made me feel. It took all these dizzy crappy feelings away. But then after a few days, the dizzy crappy feelings were less frequent, but actually more intense than without Keppra. I then had a horrible psychotic 20 something hour long set of simple after simple that I stopped Keppra cold turkey and swore off all medicines. Now I'm still in recovery from stopping cold turkey. My doctor stated I may not be having seizures at all ????

My body is a mess. My episodes are very strong now. Way worse than before and they come at night in ugly body shocks, jerks, pin pricking ways right as I'm about to fall asleep. Each day off keppra is better than the last, but since they are still coming I'm wondering if they are in fact seizures after all and I need medicine to help me.

If anyone would like to comment or give insight, I would be forever grateful.

 

[julie wishes]

Oh... car accident 11 months ago.

 

[julie wishes]

And one episode where I ordered a sandwich and all of a sudden my let's felt like spaghetti and I zoned out for the briefest moment. I grabbed the counter to stay upright, then got to the car fast. I was still aware, or it was so quick... not sure which.

 

[julie wishes]

Sorry legs felt like speghetti

 

[julie wishes]

36 lookers and no replies... feeling a little :dontknow: :crying: :crying:

 

[Silat]

Remember that PM conversation we had where I was explaining how spinal injuries can induce all sorts of things, including seizures?

I think you're having seizures, and the EEG confirms this for me. Seizures don't always involve movement, it depends on where in the brain the seizure occurs. If it doesn't go into the motor cortexs of the brain, no movement will occur.

I honestly believe part or all of the seizure activity is a result of your spinal injuries, but others may disagree.

Alternatively, the spinal injuries could be stopping any movement signals the brain is putting out from manifesting in the limbs, because the communication between them via your spinal cord is impeded by the injuries.

I'm not in a position to diagnose you, of course, but I honestly feel that those spinal injuries are tied into your seizure activity in some way/shape/form.

they come at night in ugly body shocks, jerks, pin pricking ways right as I'm about to fall asleep.

I was at my Neurologist appointment on thursday, and he mentioned to me that myoclonic seizure activity, AKA the body shocks/jerks and such, often increases when the person having them is trying to, or beginning to fall asleep. Just some food for thought, I found it interesting and it may be related.

Again, these are just my opinions, and I'm also curious what other people have to say about these things.

 

[Silat]

36 lookers and no replies... feeling a little :dontknow: :crying: :crying:

Patience, love!
I have a tendency to make long rambling posts. I'm also not the fastest typist in the world.

 

[julie wishes]

Thank you. Its so frustrating that they all got worse after taking an anti seizure med. Combing the area for a new doctor now. But no insurance makes this hard.

 

[Silat]

You were an RN, right?
Would any of the people you used to work with know of any good Neurologists in your general area?

 

[thornton8000]

Julie I have similar issues and my currnet neuro wont help me so I;m getting a 2nd and 3rd opinion very soon and I agree with silat and @silat I agree with the spinal issues I didnt know that but after looking it up and reading about it myself and having alot of spinal issues spina bifida in my s1 and many other spinal issues degen discs hern discs degen discs rotarty socialcosis cant spell sorry all, I understand completly what you are going through
and look for a neuro that would specialize with someone like you that has spinal issues and E so then you can take on both issues at onceI know they are rare or if they have a partner in their office they can work together and help each other to make a plan to help you and find out what is going on.
it'll be a long process but in the long run it'll be worth it to find the right person who can help you, I have 6 appointments in the next 2 weeks for my back and neuro so I understand the fun process of trying to find out whats going on Good luck and keep us posted.!

Mike

 

[julie wishes]

I hear you guys. I am heading in that direction for sure. I will look hard. Its hard to feel confident even if I find one after the experience I've had. I will work hard to be extrememly positive. I'm looking back at the journal and realizing that I started a new thing at PT - traction on neck and low back. Before traction I was walking 1-2 miles a day. Now can't walk more than 1/4 mile without severe pain in low back. Severe pain is there without walking. So maybe I flared something up. Now everytime my back hurts/spasms, my head gets fuzzy/tingly/weird. But sometimes, head gets that way without back spasming.

Thank you.

 

[LJ-Bain]

I know someone here had seizures that ended up being caused by bone spurs in their neck. Nerves are so important and so vulnerable.
It's all connected. There are specialists for everything yet it's impossible to get them all into one room and have them share their ideas. Wouldn't that be amazing?
I think many of us need to be Dr. Housed or stroll on down to the Mayo clinic.
I can't imagine the trauma of a car accident.
I'm sorry you had to go through that at all.
Here's a positive note: I have heard that tingling can mean healing. Maybe your body is going through it's own adjustments?
Here's hoping.