Keppra

[Matt]

Saw my neurologist today and he perscribed me Keppra 250mg twice a day.  I'm also perscribed .5mg xanax to use as needed and my doc said I can still go on using that as I usually do.  Anybody out there have experience with low dose keppra + low dose benzo + a few drinks?  Sometimes if I go out or have a show, I'll take a xanax and have a few beers and feel normal. 

 

Anyway, I'll keep you guys updated on my Keppra trial.  This seems to be the one medication (besides benzos) where more people than not benefit, even if just a minor reduction in symptoms. 

[Shadowplay]

Keppra and alcohol is just fine, don't worry about it. However, it can make the effect of Keppra less effective. So if you want to achieve it's full potential effects, especially when you are setting up your dose, drinking often isn't adviced. Once a week or something like that shouldnt be a problem, or a beer or glass of wine occasionally either. Xanax+alcohol can be lethal though. Got some friends that died from that combo. 0,5 mg isn't that much just make sure that you don't bring more, or get too drunk and goes home and pop more. I don't think you would do that, but I've seen it happened and it has its costs.

[Matt]

I've been taking Keppra now for one week, 250mg twice a day.  Can't really say I notice any difference.  I know it's a really low dose, but can anyone out there provide a timeline for it's effectiveness?  I don't have another nereuologist appointment until a month from now, but was thinking of increasing my dose by another 250mg/day if I still don't feel anything by next week. 

 

Oh, and as Shadowplay mentioned (maybe because of the low dose), a few drinks even with a low dose benzo didn't feel any different than usual. 

 

Not giving up hope for this drug yet!!  Not excepecting a miracle cure, but a small reduction in anxiety / DP/DR / brain fog would be awesome!!!!

 

 

[Shadowplay]

I've been taking Keppra now for one week, 250mg twice a day.  Can't really say I notice any difference.  I know it's a really low dose, but can anyone out there provide a timeline for it's effectiveness?  I don't have another nereuologist appointment until a month from now, but was thinking of increasing my dose by another 250mg/day if I still don't feel anything by next week. 

 

Oh, and as Shadowplay mentioned (maybe because of the low dose), a few drinks even with a low dose benzo didn't feel any different than usual. 

 

Not giving up hope for this drug yet!!  Not excepecting a miracle cure, but a small reduction in anxiety / DP/DR / brain fog would be awesome!!!!

 

I don't know if it was the medicine or not but my DP/DR is probably reduced with 80% by now. Brainfog is gone more or less. And I barely did even recognize my face nor family members during start of HPPD. I couldn't feel emotions and I felt like a floating head on a pillow when going to bed, so yes it was quite severe. I don't believe it's an actual DP/DR at all anymore, it's just a dissociation from the drug used. Stuck in a trip with mental and psychical effects.

For me it took roughly 1-1,5 months to notice effects and then it's just been getting better and better with time. I followed the doctors advise starting like yourself, then after 1 month going 1000 mg a day, until I upped myself from 1000 mg to 1500 mg as the study advices and told her so. She was fine with that. As my spikes in the EEG was shown to be reduced it means it really works and my blood is on an analysis right now to see if I should up the dose even more.

[Merkan]

Keppra 250mg/twice is low yes, i did find some relief when having mild HPPD. I remember getting on 500mg/twice and that really kicked in just in 24 hours. I am on 750mg/twice now and works like a charm. I notice immediate respons just by missing on one dose or at sometimes happen to take the double dose.

[Matt]

Thanks for the responses.  I'll probably stick with the doctor's recommend dose for now and wait until my next appointment before increasing.  Are you guys both long-term hppd'ers? 

[Shadowplay]

 I've had it for roughly 7 months now. But since my visuals hasn't improve a bit I'm positive that it will be a long case out of me.

[Guest]

Edited.

[Shadowplay]

I'm happy to see that it works for you too Pinionlel.

 

My blood tests came back from an analyze where I had according to my neurologist a low concentration of levetiracetam in my blood (48 umol/L). Since it has positive properties on me she recommended to up the dose to 1000x mg twice a day which I'm following now. Been really tired today as I'm used to only 500 mg a day, but I'll get used to it in a week probably. Looking forward to my QEEG that will go down in 2 weeks.

[Guest]

Edited.

[Merkan]

What do you guys think about emotions and Keppra? I kinda like the mood stabilizing effect but not really sure about up the dose to 2000mg from current 1500mg and what it would do to memory and affections.

[VisualDude]

I find Keppra very sedating.  For now, only use it before bed, usually just 250mg.  Dosing 1000mg or higher trashes my memory and is too sedating and disorienting.

 

It does help DR some.  The more the better so.  So above comments make sense.  For me, that is the only visual effect the med has.  All anticholinergics help my DR.  Don't have DP but assume it is related to DR and, again in the above comments, it should be helped.

 

As for mood, dosing 500mg/day or more makes me irritable toward others.  At times almost sociopathic.  B6 doesn't seem to make a difference.

[Shadowplay]

Have you noticed any immediate changes now that you've upped the dose a little? And yeah, the tiredness goes away AT MOST after two weeks. It's temporary, just like the awful part of HPPD.

 

I'm undergoing a lot of medication changes and I'm probably leaving Lamictal and an antipsychotic behind and upping my Keppra and my piracetam. Gonna do some cognitive tests and will probably take another MRI with spectroscopy during the summer and see how much these abnormalities have improved.

 

We've been through this for almost the same time and I'd say I have improved about a 60-70%. Slow but steady.

 

What about you man? How have you been feeling lately? I've got a couple of friends online that are showing up with HPPD symptoms lately from 2CB and 25-I consumption.

 

Regarding increasing my dose I've just felt a bit more tired after breakfast when my stomach is full and Keppra just kicked in. Yes, I agree with you on that point with the tiredness.

 

That sounds great! I'm glad to hear that. I don't think too much about DP/DR anymore, I actually don't even believe that it's depersonalization as others may get from traumas and abuse etc but simply just a trippy state that involves similar symptoms to dp/dr, now this is a theory but as hallucinogens do give you that effect of dp/dr while under influence of the drug (but you do obviously like it when your high) and since we are basicly stuck in a trip, I do prefer this theory then to say that "Ohh HPPD is so traumatic so all got DP/DR", then 90% of people with brain cancer would have that too right? But they don't. Also Keppra and other anti-convulsants works for us, not for people with real chronic depersonalization, now if that exists.

 

I feel good actually, my eye soreness is gone, which means I can play guitar, watch movies (fuck em starbursts) and read books. So studying and working will most likely be possible for me in the future which I'm really happy about. I'm approaching life very positively these days, as I've came out of a very deep depression with suicidal thought patterns and I've come to some insights in life now which I feel good about.

 

I'd like to relate to Kafkas story in The Metamorphosis where the human being turns into an insect and loses everything that he loved and everything that he knew. Just before he dies, he hears his sister play the violin, and that was the first time he actually listened to it with full attention, and it was also the first time and the last time when he felt the most human as ever felt, even though he was just an insect he died with joy.

 

Still have some fucked up mornings with chronic pains in jaw and head and racing thoughts, but not as often as before. It used to feel like a hammer in my head previously. Visual snow is reduced a lot. Still gets some CEV:s when going to bed and the real feelings that there is no difference with closed or open eyes, because I see the same stuff no matter if they are open or closed. Still have long trails but I try no not care about them (I was actually playing with some waterdrops in the shower before). It gave me anxiety but that's my approach, to try to become friends with my symptoms. I'm getting used to the after-images. Floaters still fucks me up everytime, all the time but I will visit Dr. C.K Patel in 1 month in London, and might get schedueled for surgery.

 

 

What do you guys think about emotions and Keppra? I kinda like the mood stabilizing effect but not really sure about up the dose to 2000mg from current 1500mg and what it would do to memory and affections.

 

Before Keppra I didn't have emotions. Now I feel like me again and my emotions are great. According to my doctor the level of levetiracetam in my blood was low, which means that a increase of the medicine is a good idea for me. However this was analyzed at Sahlgrenska in Stockholm and later determined by my neurologist, which makes her look very professional and I also count in the fact that it seems very individually how your body reacts on the medication and how much you actually have in your blood stream.

 

I will get back to you guys after my meeting in Lunds university, hopefully it's QEEG time, but it might just be some random bullshitting and then get a new appointment. How did it work out for you Merkan? Because you were there right? Did you got the test immediately or did you first had a meeting with a doctor and then got re-schedueled?

 

Take care bros

[Guest]

Edited. 

[Shadowplay]

I'm happy to hear that! Why the fuck does everyone here play bass? I do, Jay do, and you do that too? Is it all about the bass? The fuzzy tones? Is that what brought this upon us? Slappin zhe bass mon'!

 

Well, I believe that the qEEG is for a better approach and a more detailed analyze on the issue itself, so I should do it without medication to try to isolate the issue. So it's more of a research thing I believe, and for a better diagnostic picture. They can see like almost everything what's going on in my brain which is pretty cool, so I'm stoked about that. So far I've only done a sleep deprived EEG which showed some spikes in the left temporal lobe which has been adjusted back to normal with the use of Keppra, but I want more details and my neurologist takes me very seriously which is great.

[Guest]

Edited. 

[Matt]

Just an update on my Keppra treatment...  Been on 250mg x2 daily for 2 months and can't say I feel too different.  Saw my neuro again and we upped it to 500mg x2 daily for these next two weeks and then he wants me to up it again to 1000mg x2 daily in another 2 weeks.  I may actually stick with the 500mg x2 daily dose for 2 months or so before increasing (mainly for cost reasons). 

 

Also, got perscribed klonopin which I'm happy about.  Have been on xanax for almost 4 years, and on days where I do use it (about 3x a week) I find myself taking it twice througout the day, since it's effects only seem to last about 4 hours for me.  Even if klonopin isn't as strong, I'm excited that I can maybe get through an entire day with only taking a single .5mg dose.

 

I know medication can't be relied on soley for recovery, but crossing my fingers my DP/DR and brain fog reduces by 50% or so as other members here have described.   These are by far my worst symptoms.   

[Ghormeh Sabzi]

Are you taking brand or generic Keppra? The latter will obviously be cheaper, though for me only the brand version works for symptoms of pain I associate with HPPD (NHS cover most of the cost here in the UK anyway). It doesn't help any other symptoms but pain is my worst symptom so Keppra's been really good for me.

 

I am on 1000mg daily and it does the job. Different people need different amounts. The recommended doses of 1500mg+ are for epilepsy. 1000mg to 2000mg is a big jump. As you suggest it's better to wait a while and see how you do. Sometimes it takes time for the effects to take place.

 

Two months seems a reasonable suggestion. You may even prefer to go to 750mg and then 1000mg. I was on 750mg when combining with flupirtine which I have since discontinued due elevated LFTs.

[mycall81]

@ghormeh. What sort of pain do you speak of?

[Ghormeh Sabzi]

@ghormeh. What sort of pain do you speak of?

 

Pain where my thighs and buttocks meet that is exacerbated by pressure (e.g. sitting down for long periods) and much releaved by standing up and walking around. The pain is burning/stinging/tingling which and sounds much like neuropathic pain - however I have had my nerves tested and there's nothing wrong with them. An MRI of the spine and pelvis also failed to show any significant abnormalities.

[mycall81]

Sounds exactly like spinal stenosis.

[Matt]

Update: Been on Keppra for roughly 2.5 months.

 

First 7 weeks - 250mg x2 a day (didn't really notice any difference)

2 weeks - upped to 500mg x2 a day

Past week - upped to 750mg x2 a day

 

All I can say for sure is I've been having way more good days than shitty!  

 

Brain Fog - This seems to be the symptom that's improving the most.  Varies day to day but overall, I'd say about a 50% reduction as of now.  Focus is sharper, my speech has improved, clearer thinking, etc... 

 

Panic / Anxiety - About 30% reduction as of now.  No benzos today and was pretty fine acting like a normal human in social situations. 

 

DPDR / Visuals - Doesn't seem to have too much of an effect on either, but with Brain Fog and Anxiety reduction neither really bother me. 

 

Side Effects - Mild drowsiniess any irratibility.  Seems to be getting better though and was never that bad to begin with. 

 

Will definitely not be giving up on this medication any time soon. 

[hyyerd]

Update: Been on Keppra for roughly 2.5 months.

 

First 7 weeks - 250mg x2 a day (didn't really notice any difference)

2 weeks - upped to 500mg x2 a day

Past week - upped to 750mg x2 a day

 

All I can say for sure is I've been having way more good days than shitty!  

 

Brain Fog - This seems to be the symptom that's improving the most.  Varies day to day but overall, I'd say about a 50% reduction as of now.  Focus is sharper, my speech has improved, clearer thinking, etc... 

 

Panic / Anxiety - About 30% reduction as of now.  No benzos today and was pretty fine acting like a normal human in social situations. 

 

DPDR / Visuals - Doesn't seem to have too much of an effect on either, but with Brain Fog and Anxiety reduction neither really bother me. 

 

Side Effects - Mild drowsiniess any irratibility.  Seems to be getting better though and was never that bad to begin with. 

 

Will definitely not be giving up on this medication any time soon. 

so happy to hear that Keppra has the potential to help with brain fog! how did you go about bringing it up to your neuro that you wanted to try it? 

[Matt]

I was just open and honest about everything with him - showed him "the" keppra / hppd study and he was willing to let me try.  Just bumped dose up to 1000mg x2 a day starting today.  Will continue with updates!

[Shadowplay]

Great news Matt! Keep us posted.

 

I'm on 1000mg x2 a day as well, and it works fine. Sometimes I have problems with my short term memory but I doubt it has anything to do with Keppra.

 

Since I dont have DP/DR anymore. And I don't care too much about my visuals. I might try to step down from the drug due to some strange thinking patterns. I'm not sure if it's related to the drug but I might give it a shot to go down and see how it would effect me.