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415_stylee

Just started with Keppra!

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I'm on 500 mg/ day, combined with 40 mg of pyridoxine (vitamin b6) to reduce the risk of "Keppra Rage". Currently I can say that I get drowsy on it, but it's quite pleasant..

And I've enjoyed my first uninterrupted sleep in years, usually I wake 3-4 times per night.. With Keppra, it's 0 wake-ups! No visual reduction yet though, but Keppra seems to be very promising so far!

I'll keep ya'll updated in this thread..

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Initially I liked the stuff. But over time it got weird. Is yours time-released or "standard"?

I worked with "standard" because I can cut it to any size and it is cheaper ($8 instead of $200)

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Yeah, keppra didn't do it for me. Even sleep wise on 500 mg a day and I was taking 200mg of vit b6. But what doesn't work for one will work for another. Good luck man.

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Thanks! :)

I have the standard form of Keppra.

So far I have noticed better sleep quality with Keppra. Since I have ADHD my wake-ups are probably caused by EEG spikes, which Keppra has been found to reduce http://www.ncbi.nlm....pubmed/21683631

There have also been a little less anxiety and some discrete decreases in HPPD, mostly less micropsia/macropsia. Body perception has gotten a bit more normal, too.

So, no major chages yet but the small changes are very promising!

Will most likely bump up the dose to 1000 mg/ day in a month or so.

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Great link, especially since ADD and ADHD are largely considered dopamine problems.

Yes there can be too much focus on dopamine in ADHD. Low dopamine firing & uptake is the major culprit from what is known about the causes of ADHD, yet they said that there might be a whole lot more neurological factors involved. Now they've made some progress - link between ADHD and epileptic activity..

From what I've come to understand the about brain it's like clockwork, it needs all cogs running perfectly to work properly. One disturbance in a subsystem can ripple out and affect the whole system..

I'm on my 27th day of Keppra and so far there is no difference in my HPPD. I will try it for a month more if that doesn't help then I will just stop taking it. I hope it helps you out Style :D!

Thank you! I hope it helps you too.. Though I think it will not improve the HPPD symptoms massively, it have had a lot of other benefits so far; no sweating during sleep (from excessive activity spikes), DP/DR has lessened a quite a bit, body perception has improved, my cognition feels a bit sharper, less stuttering, and a couple of very small improvements of HPPD symptoms.

I generally wanted Keppra for improving the comorbid symptoms of HPPD (DP/DR, brain fog, "feeling high" etc.) rather than the visual symptoms. 7 years with HPPD has made them into normal everyday reality, in fact I would probably fall into a state of shock if the visual symptoms would vanish.. :wacko:

No benzo or dopamine agonists have done anything profound against the visual symptoms, and if Keppra doesn't do anything profound with them either it's fine by me.

But I'm impressed with what Keppra has done so far though! :)

PS: No "Keppra Rage" yet. Though I do have a lot of rage due to my ADHD so it might go unnoticed if it would appear.. ;)

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Yes there can be too much focus on dopamine in ADHD. Low dopamine firing & uptake is the major culprit from what is known about the causes of ADHD, yet they said that there might be a whole lot more neurological factors involved. Now they've made some progress - link between ADHD and epileptic activity..

From what I've come to understand the about brain it's like clockwork, it needs all cogs running perfectly to work properly. One disturbance in a subsystem can ripple out and affect the whole system..

Dopamine by itself is, like anything, too simplistic. But one can't help notice the parallel with Dr A's hypotheses: low dopamine leads to poor regulation thus cerebral hyperactivity. Perhaps this is how dopamine benefits ADHDers ... improved regulation. But there are problems with Ritalin - in general there are reports that once on it you have to stay on it as an adult and that it tends to interfere with social development.

It is curious how reducing dopamine is needed to treat some conditions. Most notably schizophrenia. Another is Tourettes. Seems in these situations overactivity is associated with dopamine. Since creativity is associated with dopamine, perhaps schizophrenia is creativity run wild. Unfortunately the quality of life side effects of antipsychotics can be very difficult.

The "link between ADHD and epileptic activity" is another theme that keeps showing up. Unfortunately epilepsy is rigidly defined such that many pre/pseudo-epileptic conditions get ignored. In simplistic terms epilepsy is excessive brain activity. So is cerebral (or any brain) hyperactivity.

Hyper (adjective): overexcited; overstimulted; keyed up; unusually energetic; excessive; over/above/beyond

In my own experience, there is documented hyperactivity ... one case with a 2 lead EEG and the other clinical observations. But a full EEG early on (when problems had just started) showed nothing. And between certain symptoms being intermittent and taking meds that have anti-seizure properties, there is no point trying for another test.

Neurologists usually consider epilepsy to be transient events and dig their heels in regarding continuous mild seizuring (hyperactivity). This in spite of the famous Oliver Sacks documenting continuous seizuring as actually existing and, for example, causing symptoms such as a person endlessly hearing a song over and over again.

http://www.youtube.com/watch?v=wGVWuWbs3Fk

The varying response to meds are interesting:

Benzos don't much affect visuals for either you or me ... yet Klonopin is the "Bible" for most HPPDers

Dopamine agonists directly affect many of my visuals, but none of yours

Keppra improves your cognition, speech, sleep, and DR. For me it momentarily helps DR, helps sleeps, but trashes cognition, causes physical pain (when withdrawing), and destabilizes emotions like benzo withdrawal - like a pro-seizure med.

How do you respond to opiates?

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It´s good to see some researcher-rigidness letting go! I had an standard EEG which showed nothing abnormal. Still hunting for a QEEG, which is needed to show the mini-seizures which are apparent with the conditions ADHD and HPPD. Standard EEG´s sweep the surface, while QEEG´s check every frequency and brainwaves. That´s why nothing besides stronger epilepsy will turn up on standard EEG´s..

I remember checking a site which listed different persisting perception disorders, and reading in this forum has made me come to a conclusion: there are different types of HPPD. I am sure I have the classic type HPPD, while some have a more dopamine-related HPPD. There different severity of symptoms within the types. And also, if the HPPD has persisted for more than 5 years the chances for recovery are much slimmer. This means that different types of meds will be more useful for different cases. The "classic" type seems to respond well to Anti-EP meds (Keppra, Klonopin, Lamictal etc.) but not respond much to DA´s. Dopamine type HPPD responds well to DA´s, but not to anti-ep´s.

With classic I mean the HPPD which follow the 15 symptoms (with a character of more CEV´s, color confusion, illusions of movement etc.)

Overall I think the "visual reduction" property of all the barrage of meds I´ve tried so far have been very overrated. And I don´t want to take large benzo doses every day to maybe keep the visuals down, that would be a devious trap for getting severely addicted.

I don´t know how I respond to opiates with HPPD, but I did get intravenous morphine a couple of years before HPPD broke out. It was just waves of warm fuzzy euphoria, and I understood how easy I would get addicted to it.. :rolleyes:

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...With classic I mean the HPPD which follow the 15 symptoms (with a character of more CEV´s, color confusion, illusions of movement etc.)...

I would VERY MUCH like to see the symptoms broken down to medicine response. There has got to be some patterns that would help a person in selecting the order of medical 'attack'. But so far haven't seen much interest from forum members to even 'poll' this info for collection. Perhaps it is the difficulty getting meds from doctors ... or perhaps fear of meds ... or perhaps attention/focus diffuculties?

http://www.ncbi.nlm.nih.gov/pubmed/12552363 Vicoprofen - transitory decrements in tasks involving simple hand-eye coordination. Otherwise no cognition issues

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http://psychedelic-i...sensory-Binding

This article had some very interesting info on how the 5ht2a receptor is involved in visual framerate, edge detection, peripheral vision, but also depersonalization and other dream-like states. Just eyed through it but I'll read the whole article soon.

"There is evidence that 5-HT2A agonists lead to lateral disinhibition in the cortex by blocking presynaptic uptake of 5-HT at the lateral inhibitory synapse, or by overriding tonic GABAB inhibitory postsynaptic potentials (IPSPs) with asynchronous ESPCs at the lateral-inhibitory synapse.21,22 Loss of inhibition at the lateral synapses in columns of the visual cortex would lead directly to shifting and wiggling in peripheral line, texture, and contrast resolution."

http://jp.physoc.org/content/539/1/223.full.pdf

I also eyed through this article regarding dopamine and vision. Interesting as well!

"The visual system is equipped with a separate dopaminergic system which

modifies lateral interactions within the retina during the

course of light/dark adaptation (Weiler et al. 2000)."

This would explain a bit why many with HPPD have so bad reactions to serotonin agonists+antagonists (boosting the dysregulation), good reactions to benzos and anti-eps (increased inhibition), but also why many dopamine agonists can help some of the HPPD-symptoms (photosensitivity and poor working-memory in particular).

Here is the Dr. Abrahams list of HPPD symptoms.

http://www.dpselfhel...order-aka-hppd/

We might be on the verge of cracking the HPPD mystery, Visual! ;):P

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I recently increased my dose to 1000 mg/ day.. And I must say Keppra is incredible stuff!
Some HPPD symtoms have decreased a bit, no major changes but still something. My visual snow is less patterned and doesn't flicker as violently now. Micropsia/ macropsia is has decreased most, distances and dimensions of objects are a bit more stable now. Visual framerate is close to normal now. I would estimate the HPPD symptoms to have decreased about 5-10%.
But this is not the best thing. I feel almost completely normal now. DP/DR has basically died out. The brain fog is the symptom which has improved most, and I feel much more sharp-minded and clear headed, much less spaced out. I have always had an speech impairment (dysarthia) which took a turn for the worse when I got HPPD (and it's companions brain fog, DP/DR). Now with Keppra it's almost gone! People around me say that my speech is a lot more understandable now.

I'm almost anxiety-free now. I had some kind of generalized anxiety which consisted mostly of unexplained feelings of dread and terror coming from nowhere. It's GONE now!!

 

I also had a form of pain which is called neuropathic pain http://en.wikipedia.org/wiki/Neuropathic_pain. This I found out after starting Keppra, since Keppra completely erased it. No more pins and needles, cold spots, electric tingling, or that my body feels like a giant bruise!
My ability to stay asleep is much improved, also my dream patterns are much more pleasant now. Before Keppra I usually had nasty dreams about demons tormenting me. I waked and fell back to sleep with 1-2 hour intervals. Everytime I waked up soaked in sweat due to the nightmares and involuntary movement during sleep. Now I sleep uninterrupted most nights, from having a literal hell for almost 7 years. My GF has told me, upon observing me in my sleep :huh:, that my breathing patterns are a lot more normal. Before it was short, strained breaths, now it's slow, deep breaths.

I've also noticed I'm less prone to get constipation.

I feel a lot more happy with life now, more relaxed and laugh more..

So in conclusion, Keppra has not cured me, but it has alleviated so much problems as a whole that my quality of life has improved a lot! :lol:

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While Keppra and I don't get along well, the one symptom it helped was DR ... even long after taking it.  Unlike those who responded well with Sinemet for DR, Sinemet doesn't affect my DR.

 

Acetylcholine is 'cognitive' in its own way ... different than dopamine.  Memory is a one that people comment about.  Clearer thinking is another.  Keppra trashes my memory when I get about 750mg/day.  Highest I got was 1125mg/day.

 

Was wondering (can't remember :lol:), have you tried Sinemet yet? 

 

 

 

We might be on the verge of cracking the HPPD mystery, Visual! ;):P

 

Let's crack this sucker ... 

crack.jpg

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While Keppra and I don't get along well, the one symptom it helped was DR ... even long after taking it.  Unlike those who responded well with Sinemet for DR, Sinemet doesn't affect my DR.

 

Acetylcholine is 'cognitive' in its own way ... different than dopamine.  Memory is a one that people comment about.  Clearer thinking is another.  Keppra trashes my memory when I get about 750mg/day.  Highest I got was 1125mg/day.

 

Was wondering (can't remember :lol:), have you tried Sinemet yet? 

 

 

 

 

Let's crack this sucker ... 

crack.jpg

 

I suppose everyone is structured slightly different.. :wacko:  I tolerate must substances very well, Keppra, benzos, dopamine agonists etc. but not SSRI's or even tryptophan in higher doses.

 

I might give Sinemet a try also. My DA/NA agonist Wellbutrin has ceased to work completely, so I need to switch it soon. Mostly because of my ADHD-related rage which is unchecked again (yeah Keppra alleviates some ADHD symptoms but definately not all). The doctors now suggest one of the last resorts Concerta, which also is known to increase HPPD symptoms. So I wonder if Sinemet does anything against ADHD rage? If so I could suggest Sinemet to the doctors instead..

:lol:  "Lets crack this sucker"!! Priceless! :lol:

 

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I wouldn't know the exact pathology of ADHD, but methylphenidate seems to be a NDRI (Norepinephrine Dopamine Reuptake Inhibitor).
Note that Bupropion isn't an agonist, but a NDRI. However the distrubution of inhibition differs between them, and targets DA more than NE, and vice versa. Can't remember which one though did which though. Either way, this makes Bupropion and Methylphenidate largely similar. Bloodplasma half-life etc. also play a role however, and this shows how two similar substances can have quite a different effect. Methylphenidate is also known as pharmacoke, whereas Bupropion is prescribed for smoking cessation because of its NaC antagonism (idk if that is the correct abbreviation, but it's Nicotinic AcetylCholine).
 

Methylphenidate can indeed be a harsh substance. If you are looking for ADHD alternatives, I recommend researching Modafinil.
It is far less addictive and subtle in its pharmacology, yet is als somehow a DRI.

 

Modafinil, when titrated to effect with a target dose of 340 mg (body weight <30 kg) or 425 mg (body weight ≥30 kg) over the course of 2–3 weeks, is effective in managing the symptoms of and the problem behaviors associated with attention-deficit/hyperactivity disorder in children and adolescents. It is generally well tolerated, with adverse events (such as insomnia, headache, loss of appetite, weight loss, and gastrointestinal discomfort) generally being mild to moderate (and rarely leading to medication discontinuation).

source

 

Hate to seem to be promoting a substance, but from what I can collect Modafinil is highly preferable over Methylphenidate or Amphetamine, and I would recommend it over those two substances any day.
You could buy Nuvigil, which is Modafinil's precursor, over the counter, and see what it does for you. I don't know about availability in Sweden, but I remember it being over the counter in the US. Otherwise, internet can be your friend. Again, I don't like promoting anything, but if you need, I could provide a reputable source for Modafinil. Just always make sure to check the importation laws of your country, as they can seem to contradict themselves. In most EU countries, import of medicine for self-administration is condoned. I'm sure your government has it's laws online, like most EU countries. Also your doc might be weary of helping you.

Regarding if Sinemet would do anything about the rage, it is a question of the pathology of your rage. If your rage is is caused by DA deficiency, then the short answer would be yes. Raising DA levels can be pharmacology done in roughly three ways: taking a precursor for Dopamine (Sinemet), agonizing Dopamine (not Bupropion, but Salvinorin A, for example is a partial DA agonist, albeit primarily taking effect by  κ-opioid antagonism), and lastly by inhibiting reuptake of DA (for which the list of agents is quite extensive, but here fit Bupropion and Methylphenidate, but also Modafinil).

Anyway, hope to have somehow informed you a little. I might've misconstrued some things above, as I'm no professional, but that's what I grasp from it.
Good luck with the rage! Ohh, perhaps Tenoten is something to look into as well. Seems to be calming, which IMO would be more beneficial for rage than a NDRI's and DRI's. I personally like the sound of it, and have ordered it for other reasons. I will asses its effects and post them online.

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...With classic I mean the HPPD which follow the 15 symptoms (with a character of more CEV´s, color confusion, illusions of movement etc.)...

I would VERY MUCH like to see the symptoms broken down to medicine response. There has got to be some patterns that would help a person in selecting the order of medical 'attack'. But so far haven't seen much interest from forum members to even 'poll' this info for collection. Perhaps it is the difficulty getting meds from doctors ... or perhaps fear of meds ... or perhaps attention/focus diffuculties?

http://www.ncbi.nlm.nih.gov/pubmed/12552363 Vicoprofen - transitory decrements in tasks involving simple hand-eye coordination. Otherwise no cognition issues

I was contemplating this today. Many people, or at least myself, also have speech problems, tinnitus, reduced motoric function, less/different feeling of the body. Perhaps it could be indeed broken down into people that merely experience the localized visual aspect (HPPD), and people that also experience other sensory perception distortion (HPSD? :P ) Hmm has just been a wild theory so far, but I plan to research the involvement of other sensory systems. I remember reading that HPPD was suspected to be a disinhibition of the cerebral cortex, whereas elsewhere it was contradicted by that it was disinhibition of only the visual cortex. I guess other areas could also be affected to produce this faulty sensory gating. Hell, I'll know more once I get my qEEG!

Visual if you like we could exchange theories by chat or something.. I'm doing my own research as well involving various mechanisms. I could really use some help with my theories. Let me know how you think about it.

Sorry for the offtopicness 415_stylee, I'll digress.

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Happy to exchange theories.  IMO, the most important thing that could be done is info from EACH member, 1) getting a detailed list of symptoms, their progressions and recessions, and 2) med responses.

 

It has been hard to get the details (raw data).  Probably because symptoms are not easy to describe (no one knows what it is like to be in another persons shoes) and because focus/attention problems are part of the disorder.  Also, most member don't get to try several meds.

 

But just as Dr A describe dopamine responders and non-responders ... we don't know what symptoms were most responsive and which ones were least responsive.

 

We are just as handicapped by lack of this info as we are with lack of researchers in the field ...   "Making bricks without straw!"

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Been on keppra for 6 months, the first symptom i noticed improvement with was afterimages...im thinkin clearer, less fatigued, less dpd out...Unfortunately i started drinkin and smokin alot of cigarettes, even smoked weed a few times, so obviously i didnt help my case at all...i believe id be almost normal if it weren't for my self sabotage...

 

I just want to let people know that many times keppra doesnt start truly helping until youve taken it for a while...5-6 MONTHS IN SOME CASES...dont give up or be discouraged if in a month, nothing has happened...if you can tolerate it well then keep on it, because it's well worth it

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Been on keppra for 6 months, the first symptom i noticed improvement with was afterimages...im thinkin clearer, less fatigued, less dpd out...Unfortunately i started drinkin and smokin alot of cigarettes, even smoked weed a few times, so obviously i didnt help my case at all...i believe id be almost normal if it weren't for my self sabotage...

 

I just want to let people know that many times keppra doesnt start truly helping until youve taken it for a while...5-6 MONTHS IN SOME CASES...dont give up or be discouraged if in a month, nothing has happened...if you can tolerate it well then keep on it, because it's well worth it

 

How long did you take to respond to Keppra?

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Visual: send me a message if you're interested in exchanging theories.. don't want to throw this topic off it's rails with neurological speculation :)

 

Boogres: that's great! Why the weed though? There's a plethora of alternative anxiolytic adjuncts without the ill effects weed has on HPPD.

 

I think it's the tedious waiting that cuts people off to soon. It's hard.. no it's a freaking mission, to have patience in this loveless, joyless state of mind.

IMO people waiting for meds to kick in, or for that matter, waiting to get help in general, should really consider some form of adjunct substance.

Nothing harsh, just the subtle stuff. Kava Kava can make a day go from "I think I'm going crazy, and I'll never get better" to "I've made it this far, I am still determined to get passed this and live a happy life." There are many of those (well-deserved) "breaks" available in different forms.

I read about people getting addicted to heroïne and such, and other forms of self-destructive behaviour, after acquiring HPPD. This is also some form of trying to escape the mental torture that accompanies HPPD.
There are safer, more enjoyable and responsible ways to do this. Right now I'm under the influence of Phenibut, and I only really take the stuff if I think I can't stand it any longer. I prefer Kava Kava which is much lighter, but I ran out of that amazing tea.
This is the first time in a month that I've taken it. Just knowing that if I can't stand things any longer, that I have this stuff at my disposal, makes the "FML-episodes" less in frequency and severity. Aside from substances, there are also many other things that can calm you down, like yoga, even if it's only 2 minutes.

 

Obviously I hope that Keppra will work for me once I get it, preferably within a few days. However there's always a chance this is not the case, and the only thing to get through that initial disappointment is determination, however hopeless you feel. That, and memories of the people you love, however vague and distant those may seem. Determination is what got me this far, and there's a good chance I'll be getting Keppra this month.


Anyways this might just be influenced jibbering, but I felt it was appropiate to give some form of insight on how I cope with "the waiting", for those of you who are also sick and tired of it.

 

415_STYLEE: How are things going? Got your life back on track?

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415_STYLEE: How are things going? Got your life back on track?

 

Well my life is not really back on track (it's actually never been on track) ;) . Though Keppra has increased my general quality of life a bit, which is always welcome. The Keppra effect has been stable since my latest reply in this thread. Visuals are still decreased by 5-10%, nothing miraculous there but still something. Still have to say that I'm most impressed how my sleep quality has improved. To not have to wake up every hour or so, no more nightmares with evil entities killing me or ripping my soul out, it's bliss! Though I still need Zolpidem to fall asleep though..

 

Planning to ask for a dose increase (1500 mg/day) after the summer. Also will try to switch from Wellbutrin to Concerta for my ADHD related rage and restlessness (Wellbutrin stopped working completely). Might sound like a crazy idea since methylphenidate is known to aggravate HPPD. But maybe Keppra can restrict the HPPD-aggravation from methylphenidate? I have cracked several bones over the years, and latest split open the skin in my forehead so I got a very ugly scar, due to the ADHD rage with fists/feet/head smacked into concrete walls etc. Might be worth a try, have a green light in my collected diagnose documents to use central stimulants as "a last resort".

Keppra does not work against ADHD-related mood swings and restlessness unfortunately..

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Well good to hear it's helping you! Your effects sounds similar to what I experienced with Keppra so far. For me, that's not nearly enough though.
Anyway just wanted to say: consider Modafinil and/or Guanfacine (or even tDCS) for your ADHD first mate. Methylphenidate, from what I know, isn't too great.

Cheers.
 

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