Most commonly used medications

[jbalsa2]

Hey guys,

Have made this thread for the purpose of educating either newcomers, or people who don’t have the resources yet on the medications that are available and most commonly used to treat and augment the symptoms of HPPD. Feel free as well to post here and ask questions.

 

Lamotrigine (Lamictal):

https://en.m.wikipedia.org/wiki/Lamotrigine

Lamotrigine, sold under the brand name Lamictal, among others, is an anticonvulsant medication used to treat epilepsy and bipolar disorder. This medication can reduce the symptoms of HPPD, and in many instances have even cured HPPD completely.

Dosing:

Lamotrigine should be titrated up slowly, starting at 25mg per day, and increased roughly every week until a typical dose of 100-200mg per day is reached. Starting lamotrigine too quickly can result in a skin condition called Stevens-Johnson syndrome, which is a condition that affects the skin on your body. It’s important to follow this titration process as this skin reaction can be deadly.

Common Side Effects:

Common side effects of Lamotrigine include sleepiness, headache, vomiting, trouble with coordination, and rash. Speak to your doctor about which side effects to look out for, and make sure to report all side effects to your doctor in a timely basis.

Resources:

Here’s the link for the NCBI case study that was done on Lamotrigine and HPPD - this can come in particular handy if you’re looking for some support in getting your doctor to prescribe you lamotrigine.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3736944/

 

Levetiracetam (Keppra):

https://en.m.wikipedia.org/wiki/Levetiracetam

Levetiracetam, sold under the brand name Keppra, among others, is an anticonvulsant medication used to treat epilepsy. This medication can reduce some of the symptoms of HPPD, primarily symptoms of depersonalizations and derealization, and in many instances has even cured HPPD completely.

Dosing:

Levetiracetam can carry with it some initial onset symptoms, such as increased irritability, and in some cases an increase in psychosis like symptoms. It should be started at the smallest dose - 250mg twice daily, and increased at a bi-weekly or monthly rate until the desired effect is reached. Most commonly effective doses of levetiracetam in patients with HPPD range from 500mg twice daily to 750 mg twice daily.

Common Side Effects:

The most common adverse side effects of levetiracetam include central nervous system effects such as somnolence, decreased energy, headache, dizziness, mood swings, and coordination difficulties. These symptoms often wear off within the first week to two weeks of therapy, but it is important to report all side effects to your doctor. It should also be noted that vitamin B supplements have been shown to augment some of these side effects effectively as well.

Resources:

Here’s the link for the cover and results page of the case study that was done on Levetiracetam and HPPD - this can come in particular handy if you’re looking for some support in getting your doctor to prescribe you levetiracetam.

https://www.scribd.com/document/138316970/keppra-evidencias-curativas

 

Clonazepam (Klonopin):

https://en.m.wikipedia.org/wiki/Clonazepam

Clonazepam, sold under the brand name Klonopin, among others, is a medication used to prevent and treat seizures, panic disorder, and other movement disorders. It is a tranquilizer of the benzodiazepine class. Clonazepam is by far the most effective treatment for HPPD sufferers, especially in the short term. Caution should be used when using this medication, as daily or recurrent use can lead to tolerance and dependency.

Dosing: 

Clonazepam dosages should typically be started at about a half milligram (0.5mg) and adjusted as necessary. It’s typically not recommended for someone to take more than 2.0 mg of clonazepam a day. Dosing, if done daily, should not be continued for a period of longer than 3 weeks, as tolerance can build up in this time frame. Some doctors prescribe doses of clonazepam to be used in a “per as needed” basis, meaning that the user can take a dosage of clonazepam 1-3 times per week to provide them with some relief while averting tolerance and dependency.

Common Side Effects:

Common adverse side effects from clonazepam can include a feeling of sedation, motor impairment, confusion, lack of motivation, and memory impairment. These side effects are typically rare if the dosage regime is started properly - at around 0.5 mg per day, with the risk of these side effects occurring increasing as the dosage of clonazepam is increased.

 

Thanks for reading guys, and as always, if you have any questions comments or concerns, please comment.

 

Edited October 15, 2018 by jbalsa2

[Jay1]

Great post, thanks.

Just to add to the clonazepam section.... Here is a system that I use which allows a lot of relief with minimal risk of addiction/tolerance (it's worked now for 10+ years).

I use a 4 days on, 3 days off benzo treatment with 14 days off every 3 months to further clean the system:

Clonazepam (1mg) - Thursday 6pm
Clonazepam (1mg) - Friday 9am
Clonazepam (1.5mg) - Saturday 9am
Clonazepam (1.5mg) - Sunday 9am

Please note that if I feel ok on any of these days and have no social situations, I often skip the dose that day. And, of course, you could pick and choose any days, but they need to be in blocks, eg, mon, tue, wed, thu.

This works for me, but tread carefully as these are crazy addictive drugs... Maybe try 3 on, 4 off first and never skip the 2 weeks off part. This is essential to test your tolerance and addiction.

[Vladchik22]

Thank you for the good information.

Sorry for the English, I write through Google translate =)

- Lamotrigine can be taken simultaneously with Levetiracetam (keppra)?

- Can Levetiracetam (keppra) be taken with antidepressants (SSRIs) at the same time?

[jbalsa2]

Just now, Vladchik22 said:

Thank you for the good information.

Sorry for the English, I write through Google translate

- Lamotrigine can be taken simultaneously with Levetiracetam (keppra)?

- Can Levetiracetam (keppra) be taken with antidepressants (SSRIs) at the same time?

Hey there vladchik,

 

If I were you I would try one or the other before combining them, they work somewhat on the same systems in the body so by combining them you may (or may not be) compromising some of their individual effects.

Levetiracetam can be taken simultaneously with SSRI's, although to be honest I've found SSRI's to have a negative impact on my hppd.

That's just me however, really it's about finding what works for you, for example I take Abilify with levetiracetam. This combination doesn't cause my symptoms to become worse, although I've heard other people curse abilify's effect on their HPPD.

[Vladchik22]

There are cases when symptoms do not return after Keppra is canceled? Do I need to take Keppra on an ongoing basis (all life)?

[jbalsa2]

1 hour ago, Vladchik22 said:

There are cases when symptoms do not return after Keppra is canceled? Do I need to take Keppra on an ongoing basis (all life)?

Hi Vladchik,

I've read that some people completely lose symptoms even after stopping keppra, and I've read of an individual who says if he stops taking the keppra that the visuals come back.

 

If it were me taking keppra, and my visuals completely went away, what I would do is continue to take keppra for another year or two years after my visuals went away, and then slowly reduce my keppra dose to see if my visuals have gone away completley. 

[Vladchik22]

Clonazepam can heal DPDR?

[jbalsa2]

8 hours ago, Vladchik22 said:

Clonazepam can heal DPDR?

It can temporarily make it better. It will not permanently erase it.

[palinoptical panopticon]

I assume my question has been discussed already, it's just a ton to read through, so sorry for being impudent. But may I just ask (again) if anybody has found anything really effective, non-addictive and if possible without or with low side effects against brain fog and helping with social anxiety?

I read that Keppra is effective for quite some people here but when looking up on the web users tend to have a variety of heavy side effects.

[jbalsa2]

On 3/29/2019 at 2:22 PM, palinoptical panopticon said:

I assume my question has been discussed already, it's just a ton to read through, so sorry for being impudent. But may I just ask (again) if anybody has found anything really effective, non-addictive and if possible without or with low side effects against brain fog and helping with social anxiety?

I read that Keppra is effective for quite some people here but when looking up on the web users tend to have a variety of heavy side effects.

Honestly I would say that keppra is your best option for that aspect specifically. You can always start slow - even 250 mg per day to guage the effects. Bear in mind it'll take a week or two for you to get used to the effect. If it's tolerable you can increase to 250 mg twice daily, so on and so forth.

Keppra is the better of the meds for treating the depersonalization and brain fog that comes with hppd. 

Il put it this way - I've been on 1000mg of keppra daily for about a year now, and I don't even feel any side effects when I take it anymore. It's just become a part of my daily routine. 

I'd be scared to say what the outcome of my life would or could be if I wasn't on the keppra.

Keep in mind as well the occasional use of clonazepam or any benzo for that matter isn't a bad thing either, as long as you're not taking it too often. For example you can easily take clonazepam two days per week, or Ativan 3-4 days a week in moderate doses and not face any repercussions. 

Just bear these things in mind. Medications are medications, they all carry side effects - in this case I'd take the side effects of these medications over the side effects of other commonly prescribed psychiatric medications any day of the week, having been on more then a few myself.

[palinoptical panopticon]

Thanks for your reply. Do you know if symptoms tend to come back after stopping Keppra? In other words, is it a treatment or a cure? May I also ask you how you would assess the improvement of your symptoms? Is it close to a 100%?

[jbalsa2]

5 minutes ago, palinoptical panopticon said:

Thanks for your reply. Do you know if symptoms tend to come back after stopping Keppra? In other words, is it a treatment or a cure? May I also ask you how you would assess the improvement of your symptoms? Is it close to a 100%?

It's more along the lines of if you had Parkinson's disease, and someone gave you a medication that made your Parkinson's disease better.

 

That being said, there's also a chance that over time it can cure you completely with sustained use. For example a year ago when I started keppra versus now, my cognitive and functional state is significantly better, and continues to improve. For that reason im not discontinuing keppra. There are also others who have cured their hppd by combining keppra with a responsible regimen of benzodiazepine use.

The way I see it, is if you've had persistent hppd for over a year, you're not losing anything by giving it a shot.

[Allen85]

On 4/1/2019 at 10:04 AM, jbalsa2 said:

Honestly I would say that keppra is your best option for that aspect specifically. You can always start slow - even 250 mg per day to guage the effects. Bear in mind it'll take a week or two for you to get used to the effect. If it's tolerable you can increase to 250 mg twice daily, so on and so forth.

Keppra is the better of the meds for treating the depersonalization and brain fog that comes with hppd. 

Il put it this way - I've been on 1000mg of keppra daily for about a year now, and I don't even feel any side effects when I take it anymore. It's just become a part of my daily routine. 

I'd be scared to say what the outcome of my life would or could be if I wasn't on the keppra.

Keep in mind as well the occasional use of clonazepam or any benzo for that matter isn't a bad thing either, as long as you're not taking it too often. For example you can easily take clonazepam two days per week, or Ativan 3-4 days a week in moderate doses and not face any repercussions. 

Just bear these things in mind. Medications are medications, they all carry side effects - in this case I'd take the side effects of these medications over the side effects of other commonly prescribed psychiatric medications any day of the week, having been on more then a few myself.

So has Keppra gotten rid of your visuals? Please reply.

[David S. Kozin]

This is a good list. 

I am setting up the space where people with HPPD, their allies or medical professionals can use to look up information about the big questions:

What pharmacological treatments have evidenced based positive results? What medications are specifically CONTRAINDICATED for individuals with HPPD? 

The page would have 30 or so medications I would imagine. It could be broken down into a Professional and a Consumer Page. I think it would be nice if a more advanced write up with citations were included as a Continuing Medication Education "type" certification, which a licensed medical professional can take in order to be listed on the World Map with their information as a doctor that at minimum has familiarity with the most important concepts.|

The goal of the web site is to create the most value and impact with the little money that we have. If individuals with HPPD go to one of these doctors, and the doctor does not prescribe risperidone as a first line of defense because the web site details a very outspoken research and patient community about why this class of anti-psychotics will produce an increase in symptoms. 

Imagine saving 5 people from having to experience this awful period, which I have known some people to have been hospitalized and placed on anti-psychotics, and as the symptoms got worse they prescribed more antipsychotics. It was about 6 months or maybe a year later, the medication was stopped and the symptoms were dramatically improved. This is where everyone can have an impact. 

 

[jbalsa2]

On 8/3/2019 at 8:00 AM, David S. Kozin said:

This is a good list. 

I am setting up the space where people with HPPD, their allies or medical professionals can use to look up information about the big questions:

What pharmacological treatments have evidenced based positive results? What medications are specifically CONTRAINDICATED for individuals with HPPD? 

The page would have 30 or so medications I would imagine. It could be broken down into a Professional and a Consumer Page. I think it would be nice if a more advanced write up with citations were included as a Continuing Medication Education "type" certification, which a licensed medical professional can take in order to be listed on the World Map with their information as a doctor that at minimum has familiarity with the most important concepts.|

The goal of the web site is to create the most value and impact with the little money that we have. If individuals with HPPD go to one of these doctors, and the doctor does not prescribe risperidone as a first line of defense because the web site details a very outspoken research and patient community about why this class of anti-psychotics will produce an increase in symptoms. 

Imagine saving 5 people from having to experience this awful period, which I have known some people to have been hospitalized and placed on anti-psychotics, and as the symptoms got worse they prescribed more antipsychotics. It was about 6 months or maybe a year later, the medication was stopped and the symptoms were dramatically improved. This is where everyone can have an impact. 

 

Your absolutely right,

That's been my absolute largest struggle is finding a single psychiatrist out there who actually listens to what most of us HPPD'ers have to say without brushing us off with seroquel or olanzapine. 

My original intention with this thread was to be a quick go to reference for something that most doctors or psychiatrists would easily prescribe in a bind for those experiencing a struggle with HPPD as I most certainly have. I suppose that goes in line with the nature of an ever evolving forum and userbase.

Proper moderation is more than welcome.

Edited August 11, 2019 by jbalsa2

[Kleine]

I am probably going to be read the riot act for this but I recently visited Colorado and purchased a low thc content indica strain and that by only taking two or three hits I was calm relaxed and got a good nights sleep my doctors are fully aware of my experimenting with marijuana I would recommend consulting your doctor before trying anything and would recommend getting medical or purchasing it legally as street drugs are not safe never use street drugs if you're seeking actual help but again I live where marijuana is still illegal so I do not use it unless I go to a state where it is ALWAYS CONSULT WITH YOUR DOCTOR BEFORE TAKING ANYTHING this is not PROFESSIONAL ADVICE I AM A PATIENT NOT A DOCTOR

[4c1d]

Hi guys. Came across this blog: https://cbd-bill.com/cbd-did-more-than-help-my-hppd/ which is relevant to this thread. I have only started using CBD oil myself. Would be curious to see who has tried it and if it helped them with their HPPD? From research alone, I can see why one may be drawn to it based on appeal. Would be good to hear from those would tried it and to see if it made any difference for them. Cheers

[jbalsa2]

I tried CBD oil for a while, it helped calm my senses to a degree, but wasn't a significant enough product that would warrant its continued use in my opinion. But I can confirm it doesn't have the effect that smoking weed has. (Thank god)

[Oldawg22]

Im already on Fluvoxamine for depression, will this have a negative affect?

 

 

[Onemorestep]

On 9/12/2019 at 5:42 PM, Kleine said:

I am probably going to be read the riot act for this but I recently visited Colorado and purchased a low thc content indica strain and that by only taking two or three hits I was calm relaxed and got a good nights sleep my doctors are fully aware of my experimenting with marijuana I would recommend consulting your doctor before trying anything and would recommend getting medical or purchasing it legally as street drugs are not safe never use street drugs if you're seeking actual help but again I live where marijuana is still illegal so I do not use it unless I go to a state where it is ALWAYS CONSULT WITH YOUR DOCTOR BEFORE TAKING ANYTHING this is not PROFESSIONAL ADVICE I AM A PATIENT NOT A DOCTOR

People with hppd’s response to “weed” seems to be more variable than people admit. Most people here, are bad enough they can’t tolerate it.

 

additionally, one must remember there can be over 180 different compounds in cannabis. I react poorly to some, and well to others. That’s one of the annoying things about it—not targeted. 
 

I have this theory about the endocannabinoid system becoming “bent” by use of cannabinoids and hallucinogens in people with hppd and this leads to poor binding of endogenous anandamide.... in other words if it works for you use the lowest dose possible and take breaks or else you might find what once caused a positive, or agonist, response soon causes a negative, or antagonistic, response. 

[mikemeas]

4 days into lamotrigine.... causing depression, headache, and struggle to sleep 

I think lamotrigine may helps in a long term

but I wont do this for 6 months if my condition stays like that 

[Spartan]

Im currently using J1s formula for klonapin, its works well..

Im also building up my dose of Lamotragine  have been taking for 3 week now

cheers 

[smirch]

@Spartan

Have you noticed any effects of the lamotragine after three weeks? 

[Spartan]

Not so much yet to be honest 

 

[Jeremysus]

On 4/6/2022 at 5:57 AM, Spartan said:

Not so much yet to be honest 

 

How are u doing?