Keppra trial - unsucessful

[Ghormeh Sabzi]

Just to document - I recently tried Keppra for a few months. I started at 250mg and slowly went up to 1500mg. 500mg in morning and 1000mg at night. From time to time (maybe once a week) I supplemented with a vitamin-B complex.

 

No significant benefit to visual or non-visual symptoms. If there was any change in any symptoms, they are very minor and not particularly noticeable. There was therefore no tangible benefit in deciding to continue with this drug, so I slowly went back down and have now come off.

 

There were also very few side effects. Maybe a little tiredness and itchiness at first, but these soon went away.

[chrismo]

For the record I have also recently tried Keppra and my experience has been pretty much identical. I will most likely begin tapering soon.

 

Ghormeh, I assume you have not noticed any difference being off the medication?

[Ghormeh Sabzi]

Since coming off, I have noticed my VS, glare from my TV and starbursts slightly more, which makes me think that perhaps it provided a very slight benefit when I was on the drug that I did not notice at the time. However, any changes were so slight that I cannot be sure of anything. Therefore, there was no significant benefit and consequently no point in continuing.

 

If you come off slowly there should be no problems since Keppra is not known to produce withdrawals. I actually went 3 days without Keppra when at 1500mg as I forgot to bring it with me when I went somewhere and I did not experience any problems.

[TheSoberPotato]

I also had an unsuccessful keppra trial I dropped about 2 weeks ago was prescribed for almost 8 months, did not do anything. I'm medicine free at the moment and it feels pretty good to not have the burden of having to pop a useless pill every day. 

[Ghormeh Sabzi]

To update - I have gone back on the Keppra at 750mg per day.

 

I have found massive relief of my worst symptom (pain) when combined with another drug called flupirtine. I would say at least a 60% improvement. In hindsight, I'd say each drug on its own provided a 20% relief of pain. There is still no effect on visual symptoms.

 

The pain may or may not be related to the HPPD - but all my visual and non-visual symptoms occurred at the same time so it would seem possible there is a relationship, even if this symptom is uncommon for those with HPPD (although a higher number on the VS Facebook group report symptoms of pain).

 

I will stay on this combo (if my doc allows) until late November when I will have a anesthetic/steroid injection in the bursa between my hamstrings and buttocks as this is mainly where the pain is located (suggesting that the pain is possibly as a result of something called ischiogluteal bursitis). If it is ischiogluteal bursitis (I hope it is) then hopefully the injection will cure it and I can go med free (I can deal with the standard HPPD symptoms until a reliable treatment is found).

[zukov]

Did you experience any change in dp-dr with keppra?

[etardnow]

all my visual and non-visual symptoms occurred at the same time so it would seem possible there is a relationship, even if this symptom is uncommon for those with HPPD (although a higher number on the VS Facebook group report symptoms of pain).

 

I will stay on this combo (if my doc allows) until late November when I will have a anesthetic/steroid injection in the bursa between my hamstrings and buttocks as this is mainly where the pain is located (suggesting that the pain is possibly as a result of something called ischiogluteal bursitis). If it is ischiogluteal bursitis (I hope it is) then hopefully the injection will cure it and I can go med free (I can deal with the standard HPPD symptoms until a reliable treatment is found).

I'm not sure if mine is that but I do have some 'sore muscle' like pain in the right buttocks. I also believe it to be linked with a single line of muscle(if it is a muscle) in the back.  WIth the back one, I can pinpoint the pain area, and rub it to soothe it but the buttocks one is not as easy. I also believe a swollen epididymis has something to do with my hppd. 

 

I can't say for sure but I think i remember thinking your symptoms or circumstances match quite a bit.

Here's a 'quick' recap:

Phosphene like visual when I wake up, i only have little to no visual snow, lots of ghosting, starburst, halo, swirl like halo, nerve zaps here and there, cherry angioma,  thinning hair(could be from the anxiety i had for a week or two), dry eyes, tinnitus, hypersensitive skin, nystagmus, mild fluid movement, tonsil stones, mild cevs, 

 

haha i guess thats a lot and probably matches with others but things like buttocks pain matching really interests me. I still have a few physical symptoms and it really leaves me questioning if i have some underlying infection or disease that is also triggering* my hppd rather than standalone hppd, especially since my physical symptoms presented itself a month before developing ghosting at which point it progressed pretty fast along with other symptoms. could be the medications i took for the physical symptoms though :\

 

*(Kind of like how a hangover can worsen symptoms for a couple days, maybe my hppd baseline is at no symptoms and an underlying problem is constantly triggering my symptoms.)

[Ghormeh Sabzi]

Symptoms I have include:

 

Visuals (visual snow, afterimages (minor and possibly improved), glare, starbursts, halos (including the colours of the rainbow contained within!), phosphenes of star like lights that appear for a second (improved and rare these days), flashing and blobs of colours, ghosting (along with VS my most annoying visual), blobs of black upon waking (improved and rare these days) and some other minor visuals).

 

Non-visuals (tinnitus (improved), pain, involuntary movements like spasms / twitches / tremors (I've been told I have dystonia)).

 

I have also just tested positive for Lyme disease.

[etardnow]

Symptoms I have include:

 

Visuals (visual snow, afterimages (minor and possibly improved), glare, starbursts, halos (including the colours of the rainbow contained within!), phosphenes of star like lights that appear for a second (improved and rare these days), flashing and blobs of colours, ghosting (along with VS my most annoying visual), blobs of black upon waking (improved and rare these days) and some other minor visuals).

 

Non-visuals (tinnitus (improved), pain, involuntary movements like spasms / twitches / tremors (I've been told I have dystonia)).

 

I have also just tested positive for Lyme disease.

 

My phosphenes are usually only when I wake up, my VS is very mild like 1%, and blobs of black upon waking, for me i do have blobs but I cant really point out what it is.

I too have tinnitus, muscle twitches here and there but nothing noticeable. I have internal tremor(body is not actually shaking but i feel like it does) when i wake up sometimes 

Even the rainbow in the halo, i have that too. like this right?

http://www.lrc.rpi.edu/programs/transportation/img/headlightglare.jpg

and halos/glows have like a swirly consistency 

 

It sucks that you have lyme but maybe its not hppd and just lyme? that would be awesome imo assuming that lyme will be cured.

Was it confirmed by a ELISA/Western blot test?

Update us on how it goes.