Had to pull over while driving

[ludwig80]

Basically as many know I did have abnormality normality show up on first EEg so I have a script of Keppra and think I will start tonight after yesterday.

I got very little sleep not last night but the night before, and woke up around 6 to help with a garage sale cause I'm broke. Felt as anyone would after 2 1/2 hours of sleep. Worked outside in triple digit heat until noonish then took a shower finally ate something and went out to run a errand. While I was driving, I so tired that I started feeling that nodding off feelling- where you are almost falling asleep but you jolt back awake. This happens to me alot when I'm trying to sleep, sometimes I'll fall asleep for a split second and actually jump from it . It's a lot like a wave passing over you or a pulse that keeps passing as a sensation in your head. Anyways, i wasn't actually falling asleep but very close, luckily I was close to where I was going. I kept fighting falling asleep and eventually I woke up a bit. I pulled off into a hotel parking lot cause I could feel something weird happening. Cause I wasn't falling asleep anymore but the pulsing was become very intense and still felt like a wave passing through my head at certain intervals. When it peaked the sound of my radio also intensified for a second and then back out.

At this point, vision become very dreamy/dr/dr and also slow frame rate of vision became slightly worse. Cognitively, my brain stops comprehending things very well, I'll need to read things very slowly and try hard to understand it, listening seems distant and feels like it takes me longer to understand things being said.. I feel very disconnected during this time, more so than any normal Dp/Dr that i experience daily. Zero emotional connection to anything that I should find some relation to. Inability to think about long term issues and have to think hard about consequences or rewards of doing anything(when I do understand them there's no emotion that goes with it). This pretty difficult to explain, but this what I tried to while it was happening.

I've had experiences similar to this before, used to happen alot the day after drinking(haven't drank in 13 or 14 months now, miss it, but gotta do what you gotta do). I could feel it come on and it would happen but my vision frame rate would be significantly slowed down. This time wasn't as intense as those, so instead of freaking out and not trying to think about it- I focused completely on it. Trying to identify ways to appropriate describe the feeling. After about 20 min, I needed to take of some business so I went in a interacted with a friend for about 10 min. I managed I think, considering everything was happening to me a the moment. Then I went and sat in my car for another 20-30 min until things seemed to go back down a bit.

Drove home and was super tired and worn out, so went to sleep at 7 p.m. on a Saturday. Unheard of for me, i didn't wake up until 6 this morning. Still dark so slept until about 930.

Still feeling a bit weird vision and cognitively wise this morning..

Last time this happened it my vision was really choppy for weeks and hppd was aggravated bad.. This time it wasn't as intense I guess, but def still feel a bit weird, and almost like it could happen again. Been about a year. I was really hoping these things wouldn't happen to me again, always afraid of how bad my vision can get and just pray it doesn't stay that way. Seen many doctors, some say it's nothing epileptic related, others say migraine, my current neuro says likely some kind of simple or focal seizure.

[VisualDude]

Sounds like a nasty experience. Curiously, just talked to another neurologist for an appointment. One thing he immediately asked for was if I had had a sleep depravation EEG.

It would seem that sleep depravation could aggravate/trigger areas that might show up.

[ludwig80]

Sounds like a nasty experience. Curiously, just talked to another neurologist for an appointment. One thing he immediately asked for was if I had had a sleep depravation EEG.

It would seem that sleep depravation could aggravate/trigger areas that might show up.

Ya I was told by my Neuro that lack of sleep, stress and alcohol lower threshold for seizure like stuff. So I don't know, of course I also just started taking NAC and Vitamin B6 and Vitamin C 2 days prior.. I doubt it had anything to do with it, but I hate when something happens right when I start taking a med/supplement, then I feel obligated to blame something instead of maybe it's nothing.

[VisualDude]

I hate when something happens right when I start taking a med/supplement

Well, staying up like that is a recipe for problems. But I know what you mean. I just started Keppra, then unexpectedly got an appointment with another doctor who wants me to be off all meds for the examination (if possible). Furthermore, had a small setback a couple months ago that was just getting over. So it kind of taints things.

The B6 is a good thing with your liver situation besides being recommended with Keppra.

My 'tainted' Keppra trail:

One thing I can be certain of is that it definitely hits on some of my 'compromised' pathways. Also, I clearly have to take B6. Without it, emotions are unstable. The general pattern is (one 375mg dose in morning):

In about 15 minutes, very calming – slightly euphoric.

In about an hour there is a shift in focal positioning with the left eye [long topic connected with work with NORA doctor]. Vision seems less ‘derealized’ but unsure if motion latency is actually affected.

In about 4 hours, agitation. And thinking is less clear.

Adding the B6 eliminated the emotional swings. Also, each subsequent day was easier – yet there is something powerful going on.

Am really surprised that this small dose would have such affect. When trying Depakote - 1000 mg was barely noticeable (slightly calming) and had no effect on visuals.

There is no doubt about it – this drug works with dopamine pathways, however remotely so. All I knew when I got the script from the doctor is that it works with a synaptic vesicle protein, SV2A (have no idea what this is about) and that some HPPD people say it helps them.

So this afternoon I Googled: "Keppra dopamine", "SV2A dopamine" (and other permutations)

Get a load of this: http://clinicaltrials.gov/ct2/show/NCT00076674 "Levetiracetam blocks certain protein receptors on brain cells and thus can change the spread of brain signals believed to be affected in patients with Parkinson's disease"

And this abstract: http://resources.metapress.com/pdf-preview.axd?code=52q7823518018061&size=largest

　

Right now, after this combination of events, I feel like I started a leaf-blower in a dusty old attic and am still spitting out dust. Not sure how and when I’ll proceed next. Since am attempting a complete washout, it would be interesting to retry Keppra by itself. For now, the dust needs to settle. Keppra is definitely one for the toolkit.

It is so strange – was deliberately looking for something non-dopamine because I thought I’d exhausted this one to the limit. Since I don’t have VS, had felt that this med would actually do nothing – HA!

Look forward to hearing how your trial goes. Do you have the XL version or regular one? Also, what dose to you have?

[ludwig80]

Levetiracetam blocks certain protein receptors on brain cells and thus can change the spread of brain signals believed to be affected in patients with Parkinson's disease"

I stumbled through those excerpts, i'm really bad at understanding the point behind all the medical terminology. Do you happen to know how changing the "spread of brain signals" could help us? Great that it has a affect on Parkinson's though, more proof that it may be beneficial in the dopamine theory.

Ya staying up late with no sleep, I try to avoid this. But with school projects, cramming for tests, and a really counter-culture nocturnal time clock, I often go a night or a few sometimes with very little sleep. I commonly stay up until 3-4ish and wake up around 10-11. This feels more natural than the 11-7 or 8 time clock.

That's cool that you feel Keppra is stirring things up a bit, hopefully it proves to be even more use for you!

I just took my first dose about 30 minutes ago. Time to get my hyper-awareness on haha. Started off on 125 mg. Will taper up from here. Haven't noticed anything that being hyper-aware couldn't explain, I suppose. Brain's a little slow, foggy, but been like that a lot today I think.

I don't think I have the XR, i'll confirm later though- the capsules are 500 mg each. I'll work up to 1000mg a day, one morning and one night.

[VisualDude]

For various reasons I’m in an unusual period of insomnia (vary rare for me). Vision is not worse from it either. I just feel like total crap – HA.

I have 750mg pills that snap in half. You are smart with the tapering, it always helps with meds since they often rock-the-boat at first.

Yea, hyperawareness has its own coloring. It seems that in many cases, over alertness may be involved: anxiety, seeing floaters, startling easy to movement in peripheral field, …

"spread of brain signals"

This sentence is very non-specific. Especially since all brain problems involve alterations in how signals are ‘spread’. Even memory (as a healthy brain function) involves changes in signals via various plasticity mechanisms.

The study seems specifically about dyskinesia – largely considered an movement instability caused by the continuous ‘pulsing’ up and down of levodopa. Kind of like a ‘learned confusion’. This is a problem with very advanced PD (about 50%) and mainly treated with anticholinergics.

Haven’t yet digested what SV2A is about. And it seems to be discussed in advanced neuroscience – so it a big learning curve. I’ll guess it primarily involves glutamate. And remember that in these pathways, and the whole limbic system, dopamine is a neuromodulator of glutamatergic neural activity (via the dual, opposite actions of D1 and D2 receptors).

So in some applications, Keppra is being used to smooth out dopamine dysregulation. Note also articles about Keppra being used for treating augmentation from treating RLS.

In the end, it seems that this has been a useful med for a lot HPPD sufferers.

[ludwig80]

Very interesting, seems keppra has definetly been helpful for some.

I'm still really curious if in having Some kind of Simple seizure or not.

So far visually I haven't noticed much difference- I want to say that some of my double vision/ghosting vision is better and also maybe the edges of things dont randomly shake as much. Cognitively I feel a bi slowed down but, my mind feels quietter with less constant chatter and internalization, I like that.

I met back with thr NORA doctor, she didnt really have to much to say other than she wanted to ask some colleagues from various places some questions. I did a bunch of neurological sensory tests and passed all Of them- except the one where I follow a lazier pointer back and forth horizontally- apparently thr test showed my eyes jumping from one spot to another with the absence of smooth pursuit. Makes sense with the slow frame rate vision- but she wants to rerun the test be because it could be user/machine error since all other tests were fine.