HBB

HBB's compilation of user testimony on effectiveness of Keppra to persuade doctors

4 posts in this topic

Here is the copied and pasted text:

(haven't read but to pg 4 on merkan's keppra trial)

http://www.hppdonline.com/forum/index.php?topic=4398.0

http://www.hppdonline.com/forum/index.php?topic=4568.0

http://www.hppdonline.com/forum/index.php?topic=5427.165;topicseen

the above are success stories of HPPD I haven't studied.

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http://www.jns-journal.com/article/S0022-510X%2805%2981946-X/pdf

above is THE link to the hppd keppra study. it cost 31 dollars to view the whole thing, but part of it is here:

Levetiracetam efficacy in Hallucinogen Persisting Perception Disorders:

a prospective study. Casa, B, Bosio, A. Drug Monitoring Service, New

York NY; USA; Mater Dei Clinic, Rome, Italy. Journal of the Neurological

Sciences, Volume 238, Supplement 1, 2005, p. S504.

Abstracts of the XVIIIth World Congress of Neurology

"Background: The occurrence of flashbacks following use of drugs is a

recognised condition known as Hallucinogen Persisting Perception

Disorders (HPPD), therapy for wlffch is based on neuroleptic and

attticonvulsant medication. Tiffs prospective study assessed the efficacy

of the novel antiepileptic drug levetiracetam (LEV) in treating patients

with HPPD over a 1-year period.

Method: Patients with HPPD were treated with LEV 1500 mg/day

(500 mg in the morning, 1000 mg in the evening) for 1 year. Daily

flashback frequency and electroencephalogram (EEG) assessments

were conducted at Day 0, 15, 30, 60, 90, 180 and 360. The incidence of

adverse events was monitored throughout the study.

Results: 27 patients (121 males, 6 females), with a mean age of 21.8

(range 18-26) years, were enrolled. At baseline, mean daily flashback

frequency was 9.3 (range 1-45) and EEG assessment demonstrated

temporal slow patterns in all patients. Over the 1-year treatment

period, 20/27 (74.1% ) patients became flashback-free. After 15 days,

7/27 (25.9% ) patients were already without clinical manifestations,

with 6 patients demonstrating > 75% reduction in flashback frequency

and 1 demonstrating 50-75% reduction. EEG patterns normalised in

18/27 (66.7% ) patients after 30 days and in 23/27 (85.2% ) after

90 days. 3/27 (11.1% ) patients continued to have flashbacks, despite

complete disappearance of EEG abnormalities. Side effects were

few in incidence and mild in severity. No patient discontinued

treatment.

Conclusions: This study demonstrated LEV to be highly efficacious in

the treatment of HPPD, with very good tolerability and ease of use."

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http://www.hppdonline.com/forum/index.php?topic=7517.0

(This is all from member ShaolinBomber)

Spike-timing-dependent-plasticity is a commonly seen phenomenon in the visual cortex on both GABAergic and cholinergic interneurons. Before you scroll down and decide not to bother because of all the text, let me say that this information is very useful in determining whether or not glutamatergic synapses and calcium ion channels are the reason for potentiated excitatory currents after drug use and that these changes can acutely change the way normal visual processing is carried out amongst the various different regions of the brain. So please, if you have the time, read through it.

STDP(http://en.wikipedia.org/wiki/Spike-timing-dependent_plasticity)

NMDA glutamate receptor induced STDP is responsible for LTP in both GABAergic and cholinergic interneurons in the visual cortex. NMDA receptors are vulnerable to calcium ions. I'm sure only a few members will be taking this thread seriously, but you same members have read my other articles talking about Calcium channels and glutamate receptors in the process of LTP. STDP has 2 mechanisms for its LTP process to take place, one of these being pre-post spiking, which is the process of presynaptic cells spiking before a postsynaptic cell, which is known to cause LTP with STDP. This form of STDP induced LTP could cause enough calcium influx for the necessary changes to take place within a cell to cause the production of new cellular proteins for future regulation of such strong stimuli.

I wanted to list keppra in the thread title because I personally believe that it has the ability to slow down calcium induced potentiated excitatory postsynaptic potentials within cells which would cause sensitization to normal visual stimuli and cause either enhanced and/or repetitive excitatory postsynaptic currents to fire off. This idea is documented throughout many keppra trial studies FROM ACTUAL SCIENTIFIC RESEARCHERS.

and for reference, heres this.

http://www.ncbi.nlm.nih.gov/pubmed/17974593?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA&linkpos=1&log$=relatedarticles&logdbfrom=pubmed

"Striatum, the main input nucleus of basal ganglia, is involved in the learning of cognitive and motor sequences in response to environmental stimuli. Striatal output neurons (medium spiny neurons, MSNs) integrate cortical activity and the two main classes of interneurons (GABAergic and cholinergic interneurons) tightly regulate the corticostriatal information transfer. We have explored the transmission between cortex and striatal interneurons and their capability to develop activity-dependent long-term plasticity based on the quasi-coincident cortical and striatal activities (spike-timing-dependent plasticity, STDP). We have observed glutamatergic monosynaptic connections between cortical cells and both striatal interneurons. Excitatory postsynaptic current latencies and rise times revealed that a cortical stimulation activates GABAergic interneurons before cholinergic, and both interneurons before MSNs. In addition, we have observed that striatal interneurons are able to develop bidirectional long-term plasticity and that there is a cell-specificity of STDP among striatal interneurons. Indeed, in GABAergic interneurons, long-term depression (LTD) and long-term potentiation (LTP) are induced by post-pre and pre-post STDP protocols, respectively. Cholinergic interneurons displayed a partially reversed STDP when compared to GABAergic interneurons: post-pre protocols induced LTP as well as LTD (the induction of either LTP or LTD is correlated with rheobase) and pre-post protocols induced LTD. The cell-specificity of STDP also concerned the receptors activated for the induction of LTP and LTD in GABAergic and cholinergic interneurons: in GABAergic interneurons LTP and LTD required NMDA receptor-activation whereas, in cholinergic interneurons, LTP was underlain by NMDA receptor-activation and LTD by metabotropic glutamate receptors."

http://www.ncbi.nlm.nih.gov/pubmed/17804631?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=2

"Repetitive correlated spiking can induce long-term potentiation (LTP) and long-term depression (LTD) of many excitatory synapses on glutamatergic neurons, in a manner that depends on the timing of presynaptic and postsynaptic spiking. However, it is mostly unknown whether and how such spike-timing-dependent plasticity (STDP) operates at neocortical excitatory synapses on inhibitory interneurons, which have diverse physiological and morphological characteristics. In this study, we found that these synapses exhibit target-cell-dependent STDP. In layer 2/3 of the somatosensory cortex, the pyramidal cell (PC) forms divergent synapses on fast spiking (FS) and low-threshold spiking (LTS) interneurons that exhibit short-term synaptic depression and facilitation in response to high-frequency stimulation, respectively. At PC-LTS synapses, repetitive correlated spiking induced LTP or LTD, depending on the timing of presynaptic and postsynaptic spiking. However, regardless of the timing and frequency of spiking, correlated activity induced only LTD at PC-FS synapses. This target-cell-specific STDP was not caused by the difference in the short-term plasticity between these two types of synapses. Activation of postsynaptic NMDA subtype of glutamate receptors (NMDARs) was required for LTP induction at PC-LTS synapses, whereas activation of metabotropic glutamate receptors was required for LTD induction at both PC-LTS and PC-FS synapses. Additional analysis of synaptic currents suggests that LTP and LTD of PC-LTS synapses, but not LTD of PC-FS synapses, involves presynaptic modifications. Such dependence of both the induction and expression of STDP on the type of postsynaptic interneurons may contribute to differential processing and storage of information in cortical local circuits."

This article talks about the same kind of plasticity developing in the adult auditory cortex.

http://www.ncbi.nlm.nih.gov/pubmed/19074036?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=3

"Adult cortical circuits possess considerable plasticity, which can be induced by modifying their inputs. One mechanism proposed to underlie changes in neuronal responses is spike-timing-dependent plasticity (STDP), an up- or downregulation of synaptic efficacy contingent upon the order and timing of presynaptic and postsynaptic activity. The repetitive and asynchronous pairing of a sensory stimulus with either another sensory stimulus or current injection can alter the response properties of visual and somatosensory neurons in a manner consistent with STDP. To examine whether such plasticity also exists in the auditory system, we recorded from neurons in the primary auditory cortex of anesthetized and awake adult ferrets. The repetitive pairing of pure tones of different frequencies induced shifts in neuronal frequency selectivity, which exhibited a temporal specificity akin to STDP. Only pairs with stimulus onset asynchronies of 8 or 12 ms were effective and the direction of the shifts depended upon the order in which the tones within a pair were presented. Six hundred stimulus pairs (lasting approximately 70 s) were enough to produce a significant shift in frequency tuning and the changes persisted for several minutes. The magnitude of the observed shifts was largest when the frequency separation of the conditioning stimuli was < approximately 1 octave. Moreover, significant shifts were found only in the upper cortical layers. Our findings highlight the importance of millisecond-scale timing of sensory input in shaping neural function and strongly suggest STDP as a relevant mechanism for plasticity in the mature auditory system."

http://www.ncbi.nlm.nih.gov/pubmed/17529985?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=9

"The receptive fields of neurons in primary visual cortex that are inactivated by retinal damage are known to 'shift' to nondamaged retinal locations, seemingly due to the plasticity of intracortical connections. We have observed in cats that these shifts occur in a pattern that is highly convergent, even among receptive fields that are separated by large distances before inactivation. Here we show, using a computational model of primary visual cortex, that the observed convergent shifts are inconsistent with the common assumption that the underlying intracortical connection plasticity is dependent on the temporal correlation of pre- and postsynaptic action potentials. The shifts are, however, consistent with the hypothesis that this plasticity is dependent on the temporal order of pre- and postsynaptic action potentials. This convergent reorganization seems to require increased neuronal gain, revealing a mechanism that networks may use to selectively facilitate the didactic transfer of neuronal response properties."

http://www.ncbi.nlm.nih.gov/pubmed/19956399?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_PMC&linkpos=2&log$=citedinpmcarticles&logdbfrom=pubmed

"The integration of episodic sequences in the hippocampus is believed to occur during theta rhythm episodes, when cortico-hippocampal dialog results in reconfiguration of neuronal assemblies. As the visual cortex (VC) is a major source of sensory information to the hippocampus, information processing in the cortex may affect hippocampal network oscillations, facilitating the induction of synaptic modifications. We investigated to what degree the field activity in the primary VC, elicited by sensory or electrical stimulation, correlates with hippocampal oscillatory and synaptic responsiveness, in freely behaving adult rats. We found that the spectral power of theta rhythm (4-10 Hz) in the dentate gyrus (DG), increases in parallel with high-frequency oscillations in layer 2/3 of the VC and that this correlation depends on the degree of exploratory activity. When we mimic robust thalamocortical activity by theta-burst application to dorsal lateral geniculate nucleus, a hippocampal theta increase occurs, followed by a persistent potentiation of the DG granule field population spike. Furthermore, the potentiation of DG neuronal excitability tightly correlates with the concurrently occurring VC plasticity. The concurrent enhancement of VC and DG activity is also combined with a highly negative synchronization between hippocampal and cortical low-frequency oscillations. Exploration of familiar environment decreases the degree of this synchrony. Our data propose that novel visual information can induce high-power fluctuations in intrinsic excitability for both VC and hippocampus, potent enough to induce experience-dependent modulation of cortico-hippocampal connections. This interaction may comprise one of the endogenous triggers for long-term synaptic plasticity in the hippocampus."

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27, 2010, 01:39:18 AM

(Trial Shaolin found on Keppra's ability to decrease migrain 'auras', and how the symptoms of migrain auras and HPPD visual distortions are similar.)

http://www.ionchannels.org/showabstract.php?pmid=17095897

"OBJECTIVE:: To evaluate the efficacy of levetiracetam as prophylactic treatment for migraine with aura with high frequency of attacks. BACKGROUND:: Migraine with aura with high frequency of attacks could represent a very demanding therapeutic problem. Efficacy of the antiepileptic drug, lamotrigine, has been reported in this form of migraine. Levetiracetam is a new antiepileptic drug with an excellent tolerability profile. Mechanisms of action of this drug remain largely unknown, but recently, it has been shown to exert inhibitory effects on neuronal-type calcium channels. METHODS:: We performed a small open-label trial treating 16 patients affected by migraine with aura with high frequency of attacks. After a 1-month run-in period, patients were treated with levetiracetam at a dosage of 1000 mg/d for 6 months. RESULTS:: The number of attacks per month was significantly reduced during the first month (compared with run-in; P < 0.001), and it was reduced further during the second (second month vs first month; P < 0.001) and the third months (third month vs second month; P < 0.001) of the treatment. This improvement persisted unchanged for the remaining 3 months of treatment. In 7 (44%) of the 16 patients, the attacks were completely abolished after 3 months of treatment. Severity of headache and duration of headache and aura were also significantly reduced at the third and sixth months of treatment (P < 0.001). Levetiracetam was well tolerated (6 patients complained of slight dizziness, nervousness, and somnolence). CONCLUSIONS:: Levetiracetam seems to be a safe and effective treatment for migraine with aura. Controlled trials are needed to confirm the observed results."

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Impressive speaking by Shaolin here.

The fact that keppra is a drug that is used to eliminate seizures in a rapid time set and the fact that most people dont see reduction in most visuals at all means its most likely not a drug thats going to restore normalcy in effected regions of the brain. theta oscillations dont cause seizures, and theta oscillation waves (a low energy wave measured by instruments during lab testing) is what is usually found in people who experience distortions of vision with things like migraines, diplopia, palinopsia, basically abnormal vision disorders similar to HPPD.

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I've made this thread to try and share some information for people who trial the drug keppra and are interested in how it works:

Keppra,(levetiractem), binds to the syanptic vesicle protein SV2A(http://www.ncbi.nlm.nih.gov/pubmed/17523458?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=4&log$=relatedreviews&logdbfrom=pubmed).

These proteins are involved in a process called exocytosis. (http://en.wikipedia.org/wiki/Exocytosis)

Keppra has high affinity for this vesicle protein and makes the process of transmitting signals between neurons (neurotransmitters) more efficent. By the sound of it on wiki, it seems like Keppra makes the ability of the vesicle proteins responsible for moving neurotransmitters out of the cell more permeable so that the neurotransmitters move easier throughout the synaptic cleft.

Keppra has no affinitys for the GABA class of receptors. (http://www.ionchannels.org/showabstract.php?pmid=14555178) It seems that keppra, either in a direct or non-direct way, closes the Ca+2 ion channels, making the neurons hyperpolarized. This inhibits the possibility of a future action potential from being created.

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MEMBER: KEEP POSITIVE

Wanted to add some thoughts on Keppra. I've been lurking for some time read through a few posts where keppra helped some folks so I decided to persuade my doc to prescribe it. I have all the classic visual symptoms, though I consider my HPPD mild. I have static, afterimages, trails, etc. No Dp/Dr. Keppra has definitely helped with some aspects, particularly the static and afterimages. When I started taking Keppra the static seemed to subside significantly after 2-3 days. It isn't gone completely, but it's definitely been minimized. I also feel better overall for some reason, maybe because my symptoms have subsided a bit. Afterimages also seem to disappear more quickly since I started taking Keppra. Can't say it's a 100% success, but it has definitely helped. I started taking 5 HTP recently and found that really intensified my symptoms. I stopped taking that and had my Keppra prescription refilled. Once I started the Keppra again, after the 5 HTP, my symptoms subsided again. I still have them, but static and afterimages are reduced. Wanted to share my story. Keep positive y'all!

MEMBER: MSwartz June 01, 2008

Hey, I've come back (I'm Mattster) due to the two recent posts on Keppra that have gotten little to no attention.

Why?

You and another person from way back recieved benefit from Keppra.

I think people misunderstood my original trial with the drug. It wasn't effecting my HPPD, it was side effects of the drug. I can tell the difference.

There was also a research study where twenty HPPD patients received Keppra and noticed considerable improvements in their symptoms.

Keppra is a drug that needs to be tested on more people with HPPD. I would have kept taking it if I didn't end up with those awful side effects. Note though that Keppra is known for being easily tolerated and few report side effects. I just happen to be someone who did.

With the addictive nature of Benzodiazipines like Clonazepam being the primary drug of choice to combat HPPD symptoms, it seems odd to me that more people aren't willing to try a drug with a minimal/slight addiction instead? I've been wondering why that is ever since I made that post. I had expected other people would give it a shot but nobody ever did.

Anyways, I'm glad you've found success with it and I hope to hear from more people who've tried it in the future.

I may be trying it again myself once I'm off of Clonazepam in the two years it's going to take to withdrawal. I believe there may have been an interaction with it, and I'd like to try it in combination with Lamotigrine and see if I still experience side effects.

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http://www.hppdonline.com/forum/index.php?topic=7312.0

wednesday now, and i can honestly say this is the best i've felt since i've gotten hppd. No other drugs are in my system except 1.5mg fof klonopin and 250mg of keppra. I know its not the klonopin doing this because i've become very accustomed to the feeling of klonopin over the past few months of use.

I will continue on 250mg for probably another week or 2 and then move to 500mg if i see it necessary.

Some visuals are down as well. Light sensitivity seems to be a bit diminished, starbursts, and some visual static as well. Its not a huge drop, maybw 10-15%.

However the reason i feel so good is because the dissociation has been uplifted and i;ve forgotten what normal reality feels like, and it feels good

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MEMBER: Jay1

good to hear mate.... I hope you can continue with it.

I am seeing a pretty major improvement now, after 6 months of use.

I'm almost scared to post the good results I have had this last week or two. Comparable to 1mg of klonopin, maybe 30%-35% reduction in all symptoms. I wish I knew why it suddenly started really working after all these months... but I ain't complaining

it's prob the combo, i heard lamictal potentiates keppra. how much lamictal do you take

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December 13, 2008, 06:57:07 AM »

so far so good... i have now moved up to 1500mg of keppra and 200mg of lamictal. I think there has been a possible 20% visual reduction, could be placebo, so I will see where it's at in 2 weeks or so. The lamictal is working... brain fog, trippy feelings and some depression are much better... I think, without the visuals, i'd be 100% cured... my brain feels back to normal.

If I can stay like this, I can live with the visuals for the rest of my life, no probs. It's a pain, but so are several other eye problems.

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MEMBER: KEEP POSITIVE

June 03, 2008

I feel like Keppra gets me 70-80% of the way there. The other person who had complete success was using Keppra and Lamotigrine together. Maybe the combination of drugs is the ticket.

Quote from: joe on May 27, 2008, 08:16:41 PM

what dosage are you taking?

500mg 2x a day

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August 04, 2008, 05:35:31 AM

Just checking in....I've been on Keppra (5 months) and Klonopin (3months), and I feel like my symptoms have decreased by about 70%. Keppra is great with reducing the static. I've also been eating healthy, not doing any drugs, and going to the gym 5 days a week. I'm sure the combination has been great, but by itself the Keppra was working. I barely notice my symptoms anymore. They only flare up after a few days of drinking which is rare for me. I don't feel any dp/dr at all, though my symptoms were realtively mild. Colors aren't as vibrant as they used to be. I still have trails, but feel like they are getting better as well. Just passing along the good news.

Keep Positive y'all!

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August 06, 2008, 04:27:46 AM

The k'pins (klonopin) have helped too. I really have the feeling I've got this thing beaten. Not so much that it's gone from my life, but the keppra and kpins have helped so much I just don't focus on iot like I used to...and the symptoms have decreased. I've had HPPD since Jan of '07...so it could be time as well. In any event, this is the best I've felt sinec Jan '07.

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September 11, 2008, 04:24:42 AM

Just checking back in. Saw my neuro=opthamologist for a follow up this week....happy to say the Keppra is def helping me. I'm probably about 60% of my baseline. My Doc said from his past experiences with folks with the same problem, the keppra took anywhere from 1-2 years to really have its greatest effects. I've been on for about 7 months now. He said most folks can get to 75-80% of their baseline vision back. I'll be happy with that.

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cheers moon! I'm still on Keppra, been over 1 year now. Just saw my doc Tuesday and we're gonna keep with both Keppra and Klonopin for one more year than discuss tapering off at that point. Keppra's had the most significant effect for me.

My static is 90% decreased

The green and purple geomoetric patterns I'd see on white walls are 99% gone

I still have sensitivity to light and trilas (palanopsia)

however it took 9 months of Keppra before the static and colors started to fade to the point where they are today.

But mainly I don't feel like I'm on a low grade acid trip anymore. That could be the kpins though.

I highly recommend Keppra for anyone else.

keep positive y'all!

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MEMBER: thrillhouse

July 25, 2008, 03:43:04 AM

http://www.bluelight.ru/vb/showthread.php?p=5481595&highlight=levetiracetam#post5481595

(the above link is dead, but I thought I'd put it in here anyway)

here is a link to the study, sorry don't know how to hyperlink. the results were very positive with 3/4 of the patients becoming HPPD free after one year of use. i think the most important point this article makes is that it can take around 90 days of use for the full benefit to be realised. I will be trialing the drug myself in the near future, will post results later in the year

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August 25, 2008, 01:14:26 AM

well ill be starting in the near future, had a hell of a time getting an appointment at the neuro-opthalmologists as he needs to do some types of eye - brain activity tests to be able to gauge any physical progress before he prescribes me, ill be sure to let you know how it goes. i know this question probably won't get answered, but if you read the keppra study it says all the patients had slow EEG patterns in the temporal (frontal) lobe and seems to attribute the success of the drug to rectifying this. it doesn't even mention the occipital lobe (at the back of the head), which is the only part of the brain i had previously heard of having any different activity in HPPD patients than 'normal' people. is this thinking of slow frontal lobe readings relating to HPPD mentioned anywhere else?

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MEMBER: Merkan

August 19, 2008, 10:35:42 AM

So i finally started Keppra today.

250mg X2/day.

The plan is to increase the dose to 500 X2/day. I'll keep you notified of any changes in HPPD/DP but also possible side effects and other stuff.

Please God make this work

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August 22, 2008, 09:14:59 AM

I'll probably end Keppra tomorrow.

i've encountered some weird side-effect. Like being stuck in my head or something.

Maybe i try lamotrigin but if that does not work, i've pretty much given up the hope for any med to help me.

Maybe melatonin could help with the DP, but with my "luck" with meds i probably won't tolerate that either.

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August 23, 2008, 03:43:54 PM

Yeah they where similar, fuck if this means that i cannot use anti-seizure meds at all.

And YEAH, it improved my symptoms so much!

My DP was lessen by maybe 80-90% and my visuals about 70% and this was only on 250mg 2x a day for 3-4 days!

When the side effects were not prominent (that would be between the doses) i more or less forgot what HPPD felt like.

So this morning i stopped taking it and i felt ok until tonight when HPPD went full blown and that was when i knew how much it helped me.

I actually forgot how bad it is, the body buzz and the visuals, ugh!

So depressing. I actually decided to drop a 250mg tonight anyway. Altough i won't be able to sleep i rather be on it until i contact my doc.

Maybe Lamotrigin will be more helpful or i'll get myself hospitalized and try out Keppra for a longer period to see what happens with the side effects over time, especially if i can get some Zopiclone to knock me out at night.

Man this has to work somehow, i would advise anyone to try this. If it would not have been for the side effect, this is soooo much better then klonopin, atleast for me.

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September 10, 2008, 04:54:05

Yeah Larry the nervous thing is back now when i am on it (again). Started yesterday. Like a small tingling in my stomach. But i am going to fight it and really give it a try this time and double the does in two weeks. This morning i took my third dose in these two days and i already feel like my HPPD is improved by 50%. Feel a little more steady in my body and mind as well.

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September 11, 2008, 04:48:32 AM

Thats a long time. In the study about Keppra's effect on HPPD, most people got improved in just a month. 75% actually became HPPD free in a year! When i got on it i improved with 50-60% in just 3 days.

I would say that is works best on the visual snow. Trails and after images are only slightly better. But i hope those get better as the time goes on. I mean, i have never taken more then 250mgx2/day for a week at the most. It will be interesting to see what happens when i get on the double dose for a month. Maybe i'll get HPPD free, this have a major impact on my HPPD_

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September 11, 2008, 07:20:27 AM

Well, my memory is much better when i am on it. That's more or less what i can say.

So when it comes to HPPD/DP vs. Keppra, Keppra makes me remember more but i don't know what the result would be in Normal vs. Keppra.

So this is only the morning the third day on this small dose of Keppra but i already feel 70% improvement to what i was like last week. Though i should mention that i had some WD issues with benzos and took some Tramadol last week. But that said, i can't believe that i have improved so much with those factors.

When i looked up at the sky this morning it's really going from seeing a crazy blizzard to be able to see a slight interfered blue sky. Also noticed that everything stopped moving.

Looking at my poster of NYC made all the buildings and cars morph around but now on Keppra everything is solid and i can notice details in the picture.

And another thing i just noticed, when i've looked at your picture, Jay, before i got on Keppra i only saw a steel face and nothing else. Now when i look at it i can see you as a person and the expressions in your face...i simply see a soul that i did not noticed before.

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September 18, 2008, 04:49:09 PM

I took my first raised dose yesterday and felt great. In the morning i felt more normal then i ever have during my HPPD, i started to feel again and actually i felt my values coming back and it was kinda scary cuz some of the values i had before HPPD, and obviously that is a part of my personality, isn't something i crave to get back. I hope you understand what i mean. The visual snow also pulled back significally.

By some reason i had another relapse with anxiety and paranoia tonight (that felt like the benzo WD) and increased HPPD.

According to my schedule i "should" have a WD reaction about now considering the last dose of zolpidem. But i am not sure but i do know that increased WD symptoms always effects my perceptual problems but even with that in mind, of course it was on the downside.

I try to tell myself that i only been on a low dose of the drug for a week but with the instant result that fades it is sorta depressing. But anyway, i will keep going on this dose, 750mg, for a week before i raise it to 1000mg. I do not feel that the side effects are worsening but it's only been my second dose.

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December 29, 2008, 06:23:01 PM

Well, i guess this is the "problem child" of mine. I had some occasional great effects with this meds. I have been completely DP free on it and great relief on some aspects of the visual. But i also had some problems with what i have identified as some kinda CNS arousal due to the med. Recently i had a couple of great days when i tried keppra together with clonazepam, it seems to suppress this arousal and the combo makes me feel almost completely normal. Strange feeling to all of a sudden feel your mind intact right behind your eyes instead of being completely scattered.

I will give this a last shot, i'll prob need clonazepam at least for some time to inhibit the bad "side effects" i get from only taking Keppra. I will update when i progress but this is by far the best

medication combo i ever tried for HPPD, actually the only thing that really worked.

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January 13, 2009, 12:51:19 PM

Keppra is supperior Klonopin in every way for me. I just uped the dose to 500mg Keppra 2x/day and i take about 0.5mg Klono 2x/day and the occasional extra pill at night, it helps with the sorta "stuck" feeling thats is far less prominent now.

My mind is still very sensitive to some things, like drinking alcohol makes my VS come back for a couple of days.

But this regime i am on know, well i almost forget that i have HPPD sometimes and really do not feel need to visit this forum. I have been doing more things the last couple of weeks then the last 3 months.

I will now stay on this daily dose of 1000mg for two weeks since it get rid of all my VS, swirling, DP/DR for know, for evaluation.

Maybe in a month if everything feels fine i'll try to get of the klono but i am on sucha small dose it really does not take away that much of affections and memory anyway.

I should add that i have not taken memory issues in consideration

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January 15, 2009, 08:49:21 AM

Yes, i also get depressed, or more like a cold robot of some sort when i only take klono. Life goes on, nothing is fun, nothing is really bad. But with Keppra life was brought back to me, the visual decrease are a great bonus.

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January 15, 2009, 011:32:21 AM

Yes, about a week for every time i dosed up.

I started on 250x2 and then increased with another 250x2 during the weeks that followed so now i am on 1000mg.

As i said i removed some of the klonopin just like that, 0.5mg (which is the same in potency as 10 mg diazepam so it is a lot) and some symptoms came back with the WD but it's getting better again.

I'll remove another 0.5mg next week and that will give me a pretty good feel about how Keppra works alone but life is really coming back to me, almost too fast with so many emotions and sharp 3D vision.

Man, my humor is back, memories, creativity, emotions, both good and bad ones; love, happiness, fear

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November 01, 2008, 09:43:29 AM

MERKAN's breakdown on what he thinks the plusses and minuses are of clonazapam and keppra

Clonazepam

Positive

- Works great on all visual aspects

- Acts specifically on the 5HT2-receptors, and research suggests that it could over time repair some of the neurological damage.

- Makes one unaware of HPPD and depersonalization

- Helping with cognitive issues

- Anxiety relief

Negative

- Greatly lessen the affections, adding to the already troublesome depersonalization

- Memory loss

- Dependence

- Paradox reactions

- Increased dose needed to obtain the same effect adding to a much severe withdrawal

- Sometimes aggravates the symptoms in the beginning of treatment

Keppra

Positive

- Reducing visual symptoms at medium to high doses

- Greatly improves depersonalization

- Greatly improves cognitive issues

- Reported to start working in a short amount of time (opposite reports as well)

Negative

- Rare severe mental side effects

- CNS related issues

- Not tolerable too all with HPPD

- Lack of research

- Not aiding everyone with HPPD

- Reports that it'll take long time for it to work

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I'll make this short cuz i only got one hand to write with sice i broke the other one.

As some of you know i have had pretty severe HPPD and DP for almost 3 years with hospitalization at numerous occasions.

I tried almost any med there is out there but nothing worked but then i started my keppra treatment.

Except a couple of flareups due to chemicals (swineflu shot and pain meds due to migraine) i have been able to live a normal life since this summer.

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MEMBER: sadbuthopeful

November 02, 2008, 03:20:20 PM

I am on the Clonazepam and am doing AWESOME. It helps with every aspect, my visuals, clears my head, makes me feel almost as normal as i did before i had hppd. The only thing i don't like about it is that it makes me super sleepy sometimes and makes me feel weak and not a lot of energy. Other than that, i consider it a miracle pill!

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MEMBER: Marquee Moon

January 16, 2009, 09:43:16 PM

pffff, computer crapped out on me. what I was about to say was that Keppra has, over the course of a month of treatment, made my hppd essentially a non-issue. I never would have believed that such progress toward recovery could be made in such a short time. Keppra is non-addictive, has a very low side effect profile and if this is in fact a seizure disorder, as an anticonvulsant, may have the potential, through long term treatment, to cure our "visual seizures". Though it doesn't seem to have to such great effects on everyone as it has on merkan and I, I think everyone who still finds this disorder to be interfering with their lives should give this stuff a shot. It has literally given me my life back, in ways that I couldn't have imagined a month ago. I really think that this is the closest thing we have to a cure at this point. We can only hope that maybe another member of the large and expanding family of racetam anticonulsants will be found to kill this thing for good. Keppra kicks kpins ass anyday. Keppra+a little kpin=heaven.

-----------------------------------------------------------------------------------------------

Yo guys,

I posted a little on here a few months back. Some of you may remember me. Anyhow, I'm more or less all better. I don't take zoloft or klonopin any longer, just 1500 mg Keppra daily which is wonderful. I'm gonna keep this one brief, cause my intro was obnoxiously long and tells most of my story. Psychologically, I'm virtually perfect, with only little bits of lingering anxiety here and there but this is more than likely due to the fact that is just finished coming off of zoloft. No more dp/dr at all. My visuals are very minimal at this point. I still get mild floaters, some light sensitivity and super mild vs none of which are immediately noticeable most of the time. I'm only 7 months in and I don't even feel like I have a disorder anymore. Just having found out about the unbelievable news that we're getting major funding for this disorder, I'm pretty confident that within the next couple of years most people who are suffering from HPPD at the moment will be able to find a way to work their symptoms into remission or cover them completely with meds. In the mean time, as if it hasn't been said enough, every single person with HPPD should try Keppra. It felt wierd for the first couple of months, but it did wonders for me as it has for many on this site. Also, I think those who suffer from dp/dr should try CBT. It trains your brain to recognize that your visuals are not a threat, thus eliminating or minimalizing dissociation. I never did CBT, but certainly would have if my hppd had decided to hang out any longer. I probably won't be coming around much anymore, because, just like everyone who gets better says, coming back here makes me anxious and brings back bad memories, despite how much I love this place.

Best to all,

Moon

----------------------------------------------------------------------------------------------

My doc gives me 750 mg pills of Kepp. I take one immediately as I wake up and another 6-8 hrs later. The thing about Keppra that is so striking to me is that the benefits seem to keep accruing. Whereas with kpin, your first dose is more or less the best you're gonna get from the med, I'm still seeing increasing psychological and visual improvements from Kepp. This seems to suggest that there may be some permanent changes going on with Keppra treatment, lending some credibility to those case reports. I think the three of us can attest that many months after starting Keppra, improvements keep coming. The other awesome thing about this med is that I don't get side effects, like zero side-effects, unless feeling awesome is a side effect. It's sweet that you guys have been able to stick with low doses of kpin, but lemme tell you, I was taking .5 mg daily and after coming off, which took about a month with pretty mild withdrawals it felt sooooo good.

MEMBER: PennyArcade

December 29, 2008, 09:07:22 PM

Im really glad its working out so far, I always thought that clonazepam would help to increase tolerance to hppders while the brain adjusts to the active meds, I have definetly been more tolerable to things while taking clonazepam even at the low dose im on.

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December 31, 2008, 01:23:32 AM

I am going to have to step up on my almost tapered Clonazepam dose. I was down to only 0.25mg divided in two daily doses. Now i have to up the dose to 0,5 mg 2x/daily (1mg/day) which sorta sucks but i'll need it to get on keppra. And a "small" dose like that is prob ok to go on for a while without loosing to much memory and affections.

It's sorta like Keppra "forces" my mind to change and my concentration is increased. When my concentration was increased i started doing things i have not been able to do, like reading. I thought fine with that, but the change was extreme and it really felt like my forehead was about to break. Dropped pain killer's did nothing and obviously my HPPD infected brain don't wanna be tweaked back so i think i have to get through this phase. This is not the "side effects" i had before just my mind reacting to the changes in the brains pathways. It feels like parts of the brain that have not been used in a while suddenly is. I had the same reaction the times when i have started clonazepam, reading a newspaper felt so easy but with it came headaches and just a lot of pressure.

I should add the dose i am on.

Clonazepam: 0.5mg 2x/day

Keppra: 250mg 2X/day

I raise the dose when i feel ready and update with every significant change i'll get from this. I am already appreciating things more like music and social stuff as well but no effects on the visuals except slight Cev's at night that's coming and going, guess that has to do with the condentration thing.

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January 3, 2009, 1:23:32 AM

Ive noticed that my ability to concentrate and learn has gone through the roof I have an unhealthy appetitie knowledge I can actually read and take things in without having to read a single page twenty times I can pretty much recall entire pages of information that would have taken me months to grasp before its a little scary I think I freaked my dad hes always seen me as being withdrawn and not particularly bright though he doesnt really know me.

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MEMBER: GILL

IMPORTANT:

Quoting from an article on keppra's effect on psychedelics:

Chronically applied LEV (keppra) may predominantly act via binding to SV2A (a neuron vesicle protein), probably leading to decreased transmitter release, which, together with the modulation of ion channels and other targets, potently prevents epileptic activity. In tissue of epileptic patients, the diseaseassociated modifications may make neuronal circuits more sensitive to LEV and new targets may emerge, such as altered GABAA receptors, thereby strengthening inhibitory neurotransmission.

Therapeutic Advances in Neurological Disorders 2008; 1; 13

Rainer Surges, Kirill E. Volynski and Matthew C. Walker

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MEMBER: Larry C (Global Administer to hppd website)

August 28, 2008, 11:47:46 AM

Adding my experience with Keppra. I have side effects since starting it about 10 days ago. Mostly a nervous feeling, anxiety and stomach queasy-ness. No effect on the "static" though mine is not the standard if there is such a thing. It is difficult to describe. Not specs in the daylight, more of pulsations and vibration. Looks like veils in the dark or like fog in fluctuation. Only when I am in a very dark room do I see specs of light. The closest that is can be said is to the tv off picture without fluctuations or dots coming in and out of existance. Just grainy.

So I may stay with low dose of Keppra for a while but it seems from the info that I see, it help people with that one visual only and it happened right away.

Merkan,

Lamictal for many is more calming. I do not know how it helps with hppd as it did nothing for me.

Also, I have seen your rating of the static that you have from another post and it seems very mild.It seems to me that your major problem is the dp/dr? And that Keppra is helping with that.

Recent literature suggests that the addition of pyridoxine (vitamin B6) may curtail some of the psychiatric symptoms.

-----------------------------------------------------------------------------------------------

VERY IMPORTANT

September 19, 2008, 12:50:19 PM

I have spent a long time with my neurologist and she accepts that I have hppd. That is why she will, based on safety, prescribe what medications may have a chance of working based on input from other sources rather than her own experience.

It takes time to get that kind of support from a doctor. I brought her numerous piece of information. She talked with Dr. Abraham, Dr. Keltner, and emailed with Dr. Lerner. She talked with every kind of exppert in every other field (and it amazed me how connected she is) to rule out other possiblilites. She is also into the body being in balance through nutrition and excercise as she thinks that can effect any system. She put me through unbelievable amount of testing. She concluded that I have hppd + something else that we are not sure of. So when I brought up Keppra to her, she listened and she had off the top of her tongue the safety record of Keppra and what she knew about it, and being thought a "safe med" in relation to others, had no problem prescribing.

So my advice is to find someone who actually is open to the possibility that you have hppd. Someone who is willing to work with you. Someone who is willing to talk with Dr. Abraham as he is willing to talk with other doctors to help (at list somewhat).

There used to be a section that said "How to find a Doctor" and I thought it was in the intro to this site. but it may have changed. Though Dr. Abraham may be able to help you with that.

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January 06, 2009, 05:55:05 PM

I also wanted to add my experience with other medications. For me Neurontin is a big help on my emotional state. It relieves anxiety thoughts and helps alot. I take 300 mg/3x per day. I really feel that I not only have a use for it, but it is needed.

Klono may be needed for some people who can not tolerate the side effects of keppra.

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MEMBER: Mattster

September 28, 2007, 03:13:26 PM

Keppra (levetiracetam), is an atypical anticonvulsant used primarily to treat epilepsy. However, there's been much interest in using this drug for HPPD which can be demonstrated by this topic.

Also, being a member of NODID I read an abstract of an article of this drug being used in the treatment of HPPD (I can't go into details so don't even ask).

I finally got a prescription after my psychiatrist did a little research on the drug and contacted a neurologist he trusts at Dartmouth who said he felt very highly of it.

So I'm starting out at 250mg 2x a day and will move up from there (maybe). I know there's been some interest in this so I'll keep people updated with how this treatment works out.

Please understand that I'm not reccomending other people go and try and get a prescription too. I'm being a guinea pig. I've read through the list of potential side effects and they're much more severe then I realized. One of them is psychosis. So on that lovely note, if I don't end up going nuts let's see how this works out. I'm taking my first dose now.

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MEMBER: G I joe

HE HAS ALOT OF GOOD NEWS:

http://www.hppdonline.com/forum/index.php?topic=7816.15

May 08, 2010, 06:58:05 PM

I have started Keppra today at 500mg, with a target of increasing to 1500mg once a day. If anyone has suggestions to a different target dosage, I am more than willing to experiment. I chose this dose because it is the same as in the HPPD study that cured most of the participants (however flawed that study may have been). I have Keppra before, but because I was also on other medications, both prescribed and not prescribed, I don't believe it was a fair trial.

I am not using ANY other medications or "street" drugs, no alcohol and no caffeine. I will not falter even once on any of these. I am also eating a balanced, partially organic diet. These conditions should make it perfect to really find out if Keppra actually works (for me, and hopefully you). I will not quit for a full year REGARDLESS of the side effects.

My hope is that it will do something for my head pressure as this is my most bothersome symptom. Visual improvement would be great, but I really don't care what I am seeing (to a degree) as long as I can think clearly.

I know many of you know much more about the molecular science of levetiracetam (Keppra), but I have read that is is similar to Piracetam which has been shown to improve brain function in people who have decreases due to alcohol abuse. Obviously this is different from LSD abuse, but maybe I'll be lucky!

I appreciate any comments as to how fast I should move up to 1500mg (or a higher target dose) otherwise I am just going to "wing it".

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HBB, where did you get this information? This was all posted on the previous site which was taken down.

Larry

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Just been going over this stuff for the psychiatrist appointment I have in an hour (eep) and I thought it would be useful to bump this thread to the front page.

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