70-95% reduction of symptoms (Keppra+Flunarizine)

[Survey]

I am going to keep this as brief and to the point as possible.

I have had this disorder for 18 years. I have tried at least forty medications and I had very limited success in treating it with Clonidine and Klonopin. However, the "progress" I had with these medications was a bit like throwing a blanket over a fire siren; they muffled the noise but, the siren was still blaring. The medications I am currently taking cut off the sound to the siren and I know you HPPDers understand that distinction.

About 5 months ago I began Keppra. This medication can make you very drowsy and Keppra rage is very real. I kept the dose low, quartering a 200 mg tablet, so just 50 mg. If I upped the dose the side effects would become too great, so I just maintained the levels without any side effects. Slowly, day by day and week by week, I noticed real progress in the way I was feeling but, more importantly in the way I was thinking (I will say more on that at the end). If I had to quantify, I would say low dose Keppra reduced my symptoms between 40-60% on its own.

After about 4 months my reduction of symptoms inspired me enough to believe that this may not be impossible to pharmaceutically treat, despite past failures with antidepressants, antipsychotics, mood stabilizers, beta blockers, benzos and other atypical meds such as, Sinemet, unfortunately.

I began to think about the fact that LSD after ingested begins by agonizing the 5-HT2a receptor, which then agonizes NMDA receptors, which is thought to largely account for the perceptional changes. Then the path gets murky, but I wondered if in the case of HPPD excitotoxicity occurred at some point (NMDA receptor overload) which works by overloading calcium channels.

5-HT2a------->NMDA---------->excitotoxicity (calcium ions)

I wondered if somehow in the case of HPPD if this cycle was still going on and if trying to block it at one of those receptors might help. I began with a 5-HT2a antagonist, Pizotifen and it had no effect. I then moved on to an NMDA antagonist, Namenda, which helped a little to calm me down, but ultimately did not move the needle. Then I read Ghormeh's post on this web site about visual symptoms being reduced by a calcium channel blocker called flunarizine and gave it go.

It didn't take long at all to get a drastic improvement with this. My typical days now consist of a 70-95% reduction of symptoms. There are many times during the day when I feel completely normal for long periods of time. My generalized anxiety is almost entirely gone, my thinking is abundantly more linear and the visuals have improved (especially light trails in the dark, less so visual snow, but still received some decent benefits in this department). I believe the meds are working synergistically. Keppra, among others things, suppresses activity in the amygalda, which is the primary fear center of the brain and a speculated source of PTSD. Flunarizine prevents excitotoxicity and has been shown repeatedly to block the effects of MDMA in the lab. It is a logical pairing. But regardless of how it works, it is working and working very well.

I ran an experiment on the flunarizine which tells me that is without question directly helping my HPPD. For the last 18 years if I were to wake up in the middle of the night and move something like my cell phone or alarm clock in the dark I would get a light trail. I noticed that they had stopped when I began the flunarizine. I went into a dark room and spun around my powered on cell and there were no trails. Two days later I stopped the flunarize and ran the test again 48 hours later and the trails came back.

I haven't felt this good since before "the incident". On the change in thought patterns I mentioned early; I believe HPPD is a perceptional and thought filtering problem. These medications allowed me to restore thought filters (and a good deal of the perceptional ones related to how you perceive the feeling in and of your body). My mind is segmented again, instead of jumbled. There are thought patterns I know to follow in everyday life and thought patterns I know to avoid. Before when HPPD was in control of my life I could hypothetically understand this, but I couldn't apply it. Now I can apply it very easily.

I hope this information helps. On Keppra, there are a few posts on this forum that state that you need to get up to 1500 mg in order for it to work and a few people advocating against a set dose and for whatever you body calls for. Obviously I would like to strongly echo the latter sentiments. For those of you that tried Keppra and couldn't handle it due to the side effects I would suggest you may want to try it again at a low dose. I am a very strong believer that if something works for one of us, it will work to a good degree for all of us because there must be biochemical uniformity to this problem. On flunarizine, I take 1mg at night. This is a strong medication so if you try it ease in with the lowest dose possible.

I have been on this pair now for a few months. I wanted to make sure my reduction of symptoms remained before I posted. They have been getting better. Things aren't perfect always, but I have regained the vast majority of my former self. Do you remember how you use to feel during a spring day walking around outside or flopping down on your back in the grass and looking up at the sky? Being able to process the sensations of the cool air and the heat of the sun and the moving trees in the wind all at once and then getting that feeling of being a part of everything around you? It gave me that back. I had to work at it though. The medications seemed to help me in part by allowing me to help myself to put my thoughts back together in an orderly fashion.

Below I have made a list of what has improved and how much:

Generalized Anxiety-85% improved

Paranoia-90% improved

The feeling of feeling that you are one with your body-80% improved

Trails-100% improved

Visual Snow-20% improved

Linear Thinking- 85% improvement

[Ghormeh Sabzi]

This is exciting. I am very happy for you. Flunarizine should only be used for 6 months I believe, and then stopped, and only continued if your symptoms come back. How long had you been on it when you stopped to see how long it would take for your trails to come back? It would be fantastic if flunarizine actually cured the trails, but obviously HPPD is different from its standard use (migraine/migraine aura). Do you plan to stop at some point or continue indefinitely?

You seem to have a large improvement from low doses as well which is really positive. The recommended dose for flunarizine is 10mg per day, so that you are getting benefit from just a tenth of that is awesome.

50mg of Keppra is ridiculously low as well. Have you tried B6 / B-complex supplementation to reduce the side effects of Keppra?

How long have you been on these two medications? Do you feel that you are getting more improvement as time goes by?

Do you have any other symptoms? E.g. ghosting, starbursting, halos, etc.

You mention some of the mechanisms behind why you think these medications are working so well together. Can you provide some sources/studies for these? They would be very useful for understanding, and also for members who might want to try and convince their doctors to let them try these meds.

[2muchmandy]

This is fantastic news! It sounds like u have ur life back. So kind of u to share aswell man. Thank u. U would recommend flunarizine( spelled wrong by me no doubt) and keppra?

[Ghormeh Sabzi]

This is an interesting article: http://www.researchgrantdatabase.com/g/5R29DA007239-03/MDMA-INDUCED-NEUROTOXICITY--ROLE-OF-GLUTAMATE---CALCIUM/

Preliminary experiments show that the NMDA receptor and voltage-gated calcium channel antagonists, dextrorphan (DEX), dextromethorphan (DEXTR), flunarizine, and cinnarizine also block the neurotoxic effects of MDMA in rats.

[mark]

Thank you

I may consult with Dr. Lerner about these

[zukov]

This is why i keep reading this great website. Everyday there's something new to try or research. Great post survey!

Question: you have dr/dp? i have another two, but ghormeh already ask you that.

[Survey]

This is fantastic news! It sounds like u have ur life back. So kind of u to share aswell man. Thank u. U would recommend flunarizine( spelled wrong by me no doubt) and keppra?

Hi 2muchmandy- I wouldn't recommend starting flunarizine and Keppra at the same time, but adding one followed by the other might help. I believe there is enough evidence on these boards to suggest that everyone should give Keppra a try. As the only person with HPPD who has tried flunarizine (that I am aware of), I am not sure if it will be of any help on its own. It theoretically should, but I can only tell you that the improvements on Keppra were slow, but the improvements when I added the flunarizine were quite fast.

One interesting point on flunarizine. I have been on Klonopin for over 12 years at a dose between .5mg and 1 mg every day. I have tried dozens of medications while on Klonopin and have been unable to cut back the dose. After the second day on flunarizine I haven't needed any Klonopin.

This is exciting. I am very happy for you. Flunarizine should only be used for 6 months I believe, and then stopped, and only continued if your symptoms come back. How long had you been on it when you stopped to see how long it would take for your trails to come back? It would be fantastic if flunarizine actually cured the trails, but obviously HPPD is different from its standard use (migraine/migraine aura). Do you plan to stop at some point or continue indefinitely?

You seem to have a large improvement from low doses as well which is really positive. The recommended dose for flunarizine is 10mg per day, so that you are getting benefit from just a tenth of that is awesome.

50mg of Keppra is ridiculously low as well. Have you tried B6 / B-complex supplementation to reduce the side effects of Keppra?

How long have you been on these two medications? Do you feel that you are getting more improvement as time goes by?

Do you have any other symptoms? E.g. ghosting, starbursting, halos, etc.

You mention some of the mechanisms behind why you think these medications are working so well together. Can you provide some sources/studies for these? They would be very useful for understanding, and also for members who might want to try and convince their doctors to let them try these meds.

Hi Ghormeh Sabzi. I did not have any other visual symptoms such as, ghosting, halos or starburtsting. I have visual snow and formerly saw light trails in the dark. As far as studies to present to your doctor, you already produced a good one on MDMA. On Keppra's activity in the amygdala here is a link to the page that mentions a regulation of some activity in the hippocampus and the amygdala. The information on the page on this link is why I gave Keppra a shot. Anything that supposedly works in the hippocampus and amygdala is worth a try. Interesting that it points out that it probably works on calcium channels. I just noticed that now. I also just saw that another member here Jay1 had noticed improvement by taking magnesium supplements. I believe magnesium is thought to work on anxiety related problems in part by slowing down calcium channel activity, so that might be the common link between Keppra and flunarizine, but that is obviously just a guess.

http://www.crazymeds.../Meds/Keppra-XR

This is why i keep reading this great website. Everyday there's something new to try or research. Great post survey!

Question: you have dr/dp? i have another two, but ghormeh already ask you that.

Hi Zukov. I had a bad case of derealization/depersonalization. Since I started these meds I have had about a 75% reduction of those feelings.

[Danny13]

Great news - I have had hppd for 19 years this june and probably up to the 50 med mark

Does anyone know where I can get Flunarazine in the UK as not available for docs to prescribe it?

Many thanks

Danny

[Ghormeh Sabzi]

Danny,

Have you asked your doctor about it? I believe it is available in the UK.

[zukov]

Many thanks for your answers mr Survey!

[Alfa_spring]

Is this avaible in Equator? zgreetings. excelent post!

[Danny13]

Hi gormeh

no havent checked it was just from reading up about it

has anyone else tried to get prescribed in uk

[Ghormeh Sabzi]

I mentioned it to my neuro earlier today and she was aware of it.

I believe it is something Peter Goadsby has prescribed to UK patients in the past.

[2muchmandy]

Hi gormeh

no havent checked it was just from reading up about it

has anyone else tried to get prescribed in uk

not sure star but il definately be trying. have u been prescribed meds for hppd before and is it hard? im up in scotland and my local quacks have no clue about hppd so im worried they wont let me try keppra senimet etc...

[Danny13]

Gp says not licenced in uk. i will try private clinic to get them to prescribe. if not internet it is. does anyone know good reliable sites?

[nuroeone]

Thats great news, i would love to hear a report from someone with more visual symptoms particularly starbursts, ghosting and after images to hear about the meds effects on that aspect of it and whether or not the positive changes are permanent or a temporary fix to the problem.

[must-be-a-way-to-heal]

That is awesome news Servey!! I am very happy for you and thankyou for shareing all of your great info

I am curently giving Sinamet a good trial... Will be seeing docter nex week and i am going to follow through with what you recomended on Keppra and Flunarizine

Great news.. Thanks!!

[Ghormeh Sabzi]

Gp says not licenced in uk. i will try private clinic to get them to prescribe. if not internet it is. does anyone know good reliable sites?

I'm sure I read a few months ago on an NHS website that it is not licensed or sold in the UK but can be imported. I'll see if I can find the link for you.

[2muchmandy]

I'm sure I read a few months ago on an NHS website that it is not licensed or sold in the UK but can be imported. I'll see if I can find the link for you.

forward it to me aswell please ghormeh

[Survey]

Hi all. I want to emphasize a few points I have made previously.

1) I have absolutely no idea whatsoever how these two medications have been able to be of help to me. Everything I have written about the mechanics of how they might be helping is 100% speculation on my part.

2) As I said in my first post, before I noticed any help with flunarizine I had been on Keppra for four months with a 40%-60% improvement from that drug. I have no idea if flunarizine will be helpful on its own as I have never tried it on its own.

3) These medications helped me help myself. They gave me breathing room to recognize thought patterns that were unhelpful and calmly eliminate most of them.

From what I can tell, looking somewhat retrospectively on how HPPD works, is that there was that moment during the LSD trip when you know things are getting out of hand and you are about to lose control. There is a defense mechanism in the mind that is suppose to bat down that irrational/overwhelmed feeling that gets overrided and most of your thoughts get sent down what I call the "HPPD corridor" which is where a simple thought that has no context whatsoever for being a thought that should be wrapped in feelings of fear or anxiety do get wrapped in these feeling. So a thought such as "it looks like a nice day outside" can get sent down the HPPD corridor and cause feelings of being overwhelmed. These medications have helped me to largely close up that corridor.

I hope that makes sense. Keep in mind that it did take time for me to get here and although I am extraordinarily better I am not 100%

[2muchmandy]

thats what i kinda think too man, alice brought up that its like a drug form of ptsd and i think shes right.

[Ghormeh Sabzi]

http://www.gosh.nhs....event-migraine/

Although this medicine is widely used by headache specialists in the world and is licensed in many countries for the prevention of migraine, it should be noted that flunarizine is not marketed nor licensed in the UK. The medicine has to be imported from abroad by a licensed pharmaceutical import company under the brand name Sibelium®.

--------

Some general info about flunarizine that may be of interest: http://www.medicines...m+5+mg+tablets/

[Survey]

Hi All,

Here are some interesting articles suggesting that Keppra works on calcium channels in the hippocampus, which as many of you know is thought to be one of the main areas in the mind where traumatic memories/PTSD forms.

http://www.dr-bob.or...sgs/546308.html

http://www.ncbi.nlm....pubmed/11403944

http://onlinelibrary...1pzf47o3542778e

[Survey]

I want to point out something else (purely speculative of course). The second link above states that Keppra may work by suppressing Ca2 channels. I just also noticed that excitotoxicity often works by activating Ca2 receptors:

http://en.wikipedia..../Excitotoxicity

May be nothing, but since it is a problem with MDMA overdose there could be overlap.

[zukov]

I have some fears about the flunarizine, mostly the precautions to people with depression, im sure there's a lot of people depressed here (incluided myself).