Keppra and other tools- an anectode

[Merkan]

Before reading,

this is just a piece of my own experiences and should not in any way be interperated as a generalized treatment suggestion. Please speak with your doctor if you somehow are interested in treatment using any kind of medication. Questions that is supposed to be addressed with a doctor or impossible for me to give an reliable answer will be left unanswered.

Also i will not go into theories about the function of this regime on HPPD.

Keppra is developed as an anti-seizure medication, primarily as an add-on medication to other anti-seizure meds with multiple effects on the brain.

Anti-seizure medication is also known for treatment in bi-polar disorder. Keppra however, only has one action and is often refereed to as "strictly neurological".

Thats what i have been told by doctors but i do not claim it myself.

Anyway, i started with Keppra about 18 months post HPPD for just some days. What happened is very hard to define. I can only describe it as the light switching on in my brain making me very focused and i noticed that my symptoms at that time (visual snow and trails) changed drastically. The snow slowed down an the trails did not least as long as the used to. With it, the depersonalization/derealization cleared up.

I felt great a couple of days but at night i got pretty intense cev's and an uncomfortably feeling in my body. My symptoms was almost gone when this happened. Today it wouldn't have freaked me out like it did then but it did so i stopped the Keppra regime. I was at this time still hoping for my HPPD to heal by itself. Looking back i wish i would have kept going but what i have learned is that wishing won't change anything.

What happened a couple of months later really changed the way i would look at my conditon in the future. I was at the time using kodein and tramadol as some kinda self medication. I got some Kratom which is an opiate agonist but also have several other alkaloids in it . When i took it, i immediately felt that something was wrong. I felt like a bad high coming on that felt more like cannabis.

When the effects where off, my symptoms came on 10x stronger then before and everything was visually so bad that i wanted to die. My mind was racing bad as well. I was hospitalized due to this.

When i came out of the hospital i got clonazepam which sorta made me ok from the racing mind but still i had very bad visual and mental problems.

I remembered the Keppra from earlier I had some rough days but a week post starting it i started feeling much better and a lot symptoms faded rapidly.

Still had some issues but i was ok that i survived my second onset. Without these meds i would have been lost, i truly believe that.

Some months went by and i wanted to see how raising the dose would effect my symptoms, would it be possible to get even better?

It took some time but it really helped me even further by adjusting the dose. I started to live a life worth living, got back to school, visiting friends, got creative etc.

Still had some symptoms but i didn't bother that much, i was glad to have a somewhat meaningful life.

However, if the experience with kratom gave me a cruel unexpected punishment, something else came as a gift from God. I have always struggled with my weight, lost a lot of wieght, gained some, just to loos it and then gaining.

So i read online on something called "LCHF". I started this though i still ate sugar from time to time. I noticed my remaining symptoms becoming even better then before.

I read up on this diet and read that a strict diet over time could help people with epilepsy. My thought was, well why don't give it a shot.

It was two though weeks but i decided to wait it out. Two weeks had passed and i was in my class and suddenly it just hit me like the day i first got HPPD. I was oblivious to my remaining visual symptoms and DP/DR just went away like that. I felt completely normal.

The following weeks made me even better. It felt like i was taking twice the dose of my medication but i felt great and no symptoms at all. However i got very tired by the sudden way the intensity of the medication kicked in. As i said, it gets me tired, Hopefully it'll give me some energy back and still remain symptom free.

One thing i've learned though is that this calls for a strict diet that is supervised by a doctor and no alcohol at all.

Remember that this is my story, people react differently and my regime and medical doses can NOT be applied to everyone.

I will get back to you as soon if anything changes.

// Gustaf

[windscar]

Great thread, thank you very much. I have already done the ketogenic diet several times before I even knew what HPPD is, for other purposes. I have attempted doing it a few days ago but noticed no improvement. I'm not sure I achieved the ketogenic state, though, because I ate some things that could possibly have some carb. I will try it again soon.

Is Keppra a strong drug, have it had strong or long lasting negative psychoactive effects for you? Any idea of how I can get a prescription for it where I live, as no medician here knows what HPPD is?

[Merkan]

I am not sure my answer will satisfy you but i'll try since i am only answering what a doc cannot or if the question is such that i cannot say for sure.

"Strong drug" is hard to define because it is relative. I wont touch that subject. When it comes to me i do have had some migraines in the beginning (couple of months and when i raised the dose). It also balanced my mood which cut both downs and lows. That is both a blessing and a curse to me. It also lessened my sex drive. Want to make it clear, those are my experiences.

As for prescription advice i cannot say anything about that. Btw, Keppra is not a recognized treatment for HPPD. Describe your symptoms and talk with the docs if it could be beneficial to you or if any other treatment is recommended.

Is Keppra a strong drug, have it had strong or long lasting negative psychoactive effects for you? Any idea of how I can get a prescription for it where I live, as no medician here knows what HPPD is?

[Br0k3nS41nt]

Keppra from what I hear has given relief if not complete remiss to multiple people with HPPD. I have also heard horror stories. Keppra is one of those drugs that HPPDers ask their doctors about when nothing else seems to work, when the doctor is about as fusterated with the disorder as the patient. Many doctors wont know that keppra can help, if the patient appears knowledgeable about the neuropathy, many doctors will allow them to try.

[Merkan]

Pretty much sums up my experience until i payed the top neuro in my country big bucks to take me on.

Keppra from what I hear has given relief if not complete remiss to multiple people with HPPD. I have also heard horror stories. Keppra is one of those drugs that HPPDers ask their doctors about when nothing else seems to work, when the doctor is about as fusterated with the disorder as the patient. Many doctors wont know that keppra can help, if the patient appears knowledgeable about the neuropathy, many doctors will allow them to try.

[Br0k3nS41nt]

I also believe that not all HPPD is created equal, many things may cause the disorder, probably why it is so hard to track down. All depends on your own brain chemistry and what you injested that gave you it. I have read many stories of many drugs working while others have had the opposite reaction. The brain is still one hell of a mysterious place, especially the way it processes sensory data. What I find promising is that with time they will be explained. A lot can be learned in the next ten twenty years.

[Merkan]

Yes, i remember Dr. Henry Abraham saying that few cases are spontaneous without any obvious trigger (no medical or substance used)

I also believe that not all HPPD is created equal, many things may cause the disorder, probably why it is so hard to track down. All depends on your own brain chemistry and what you injested that gave you it. I have read many stories of many drugs working while others have had the opposite reaction. The brain is still one hell of a mysterious place, especially the way it processes sensory data. What I find promising is that with time they will be explained. A lot can be learned in the next ten twenty years.

[ludwig80]

I also believe that not all HPPD is created equal, many things may cause the disorder, probably why it is so hard to track down. All depends on your own brain chemistry and what you injested that gave you it. I have read many stories of many drugs working while others have had the opposite reaction. The brain is still one hell of a mysterious place, especially the way it processes sensory data. What I find promising is that with time they will be explained. A lot can be learned in the next ten twenty years.

Agreed, So many different reasons for HPPD like symptoms and so it seem like it may be a case by case issue.

Merkan-

Could I ask what your main symptoms were before starting Keppra. Trails, DP/DR, Snow etc.. More specifically did you have any that weren't so common to HPPD board like vision that was lagged or that seemed to have a slow frame rate? Extreme Fatigue..etc.

My EEg showed seizure like abnomalities stemming from the occipital(which i've learned is the visual processing area).. seem that Keppra may be of use, but i'm quite terrified of anything get worse. After two to three years with HPPD it seemed that it had gotten better to the point I didn't notice it very often.. then came back significantly worse due to stress and dollar wells night at the local pub. Symptoms are back but different and more intense, feels more "seizure" like if you will.

[Merkan]

Ludwig>> sorry, i have a LOT to do right now. All i can say is that i only had typical HPPD like snow, trails, glares, flickering etc. etc. and DP/DR that followed the intensity of visual symptoms.

No lag or fatigue.

Written on the run on iphone

[VisualDude]

Do you still follow the same diet?

Do you still take about the same doses of your meds? Or have you been able to taper to lower amounts?

[Merkan]

Same diet, even more strict.

I am about to change my meds so i'll need to get back to you. Probably it will say something about how much the diet is doing (i just know that it is doing A LOT)

However, i wont say the specific dose i am on, though i did that in the original post (now deleted). I will only tell if i change the dose up or down on any of the meds and what it does to me.

[Merkan]

This week i will start to taper my keppra with 1/3 of the dose over 10 days. I sometimes feel a bit weak, like i am taking too much.

[Merkan]

Writing on the iphone, it will be interesting to see if i get any visuals back and if the cognitive issues will come back as well. Get back to you as soon as i know more about this.

[VisualDude]

While Gabapentin has relatively minor effect on my visuals, when I started it (300mg, 6x a day) it actually gave me energy. As overall health has improved, the dose has gone to 1 or 2 times a day – the higher dose now ‘drugs’ me.

Though I do not suffer visual snow (unless ‘back-lighting’ can be considered 'smooth' visual snow - both are 'noise'), will be discussing Keppra with doctors in a few weeks. Klonopin and Gabapentin both help the back-lighting. As does higher doses of Sinemet, but prefer to keep this as low as possible. The amount of dopamine agonists ‘needed’ has gone down considerably.

So the moral of the post is that for some it is possible for the minimum effective dose to lower.

Hopefully you will no longer need as much medicine as at first. But if you do, it is a small price to pay for the gain in functionality. And you can always re-evaluate down the road.

[Merkan]

Ok, so the cut in dose was a disaster. Most of my symptom came back and i got extremely depressed that i "noticed" that my symptoms where the same as before. Keppra is indeed so far just masking my symptoms. It truly is a blessing to me that i have a drug that has virtually no side fx and make me oblivious to HPPD and still so functional.

I will, if there are no contra interactions, try sinemet to see what happens. I truly believe that henry and kozin are on to something with the dopamine theory.

Anyway, when i settled in school i will try to start taper clonazepam really slow.

Just a side note why i am still looking into trying to adjust my meds is that keppra comes with on pro and one con; It really makes me smarter. It feels like i can do anything and i understand things that used to be very abstract to me. In that i believe my cognitive functions has improved. At the same time my emotions are kinda flat lined. I would like to feel a little ore then i used to but as my neuro so delicate expressed it: "Keppra is like putting the lid on" and thats sums it up.

[ludwig80]

Ok, so the cut in dose was a disaster. Most of my symptom came back and i got extremely depressed that i "noticed" that my symptoms where the same as before. Keppra is indeed so far just masking my symptoms. It truly is a blessing to me that i have a drug that has virtually no side fx and make me oblivious to HPPD and still so functional.

I will, if there are no contra interactions, try sinemet to see what happens. I truly believe that henry and kozin are on to something with the dopamine theory.

Anyway, when i settled in school i will try to start taper clonazepam really slow.

Just a side note why i am still looking into trying to adjust my meds is that keppra comes with on pro and one con; It really makes me smarter. It feels like i can do anything and i understand things that used to be very abstract to me. In that i believe my cognitive functions has improved. At the same time my emotions are kinda flat lined. I would like to feel a little ore then i used to but as my neuro so delicate expressed it: "Keppra is like putting the lid on" and thats sums it up.

Pretty bummed to see that Keppra was just masking your symptoms. I had high hopes for you and that med. At the very least, a med without side effects that actually treats your symptoms is something to be very happy about.

[VisualDude]

Keppra is indeed so far just masking my symptoms

It may mask or it may treat. While our desire is for a cure, it is real progress to find a med that positively affects a person. It may over time be somewhat curative as well. And certainly provides direction for more things to try in the future.

All this is POSITIVE.