Survey

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

53 posts in this topic

If my doctor doesn't believe in Hppd then how do you get them to prescribe Keppra? Did you lie about headaches?

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it's hard. You must find a way, some dr its gonna help you. HPPD? They dont believe that i have depersonalization!

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''if my doctor doesn't believe in Hppd then how do you get them to prescribe Keppra? Did you lie about headaches? ''

That's how I always go about getting my meds. I just say I'm suffering from whatever the meds are targeted to helping w. Just easier then trying to explain hppd, for me atleast.

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Ethically I would hate to do that. But given the ignorance of the medical community (excluding David and Dr A), I might just have to do what I have to do. I may just be developing some restless legs here in awhile that might require a script for Requip or Sinemet

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One thing isn't clear for me though: if you stopped taking the keppra, would all the HPPD symptoms come back? I am seriously considering this

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Some really interesting posts in this thread. Thanks for the share :)

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Thank you for posting this!

These two medications are definatly on the backburner, I have them both prescribed, not keen to try anything yet though.

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I thought about giving Flunarizine a try but am hesitant because I don't want to be let down yet again. I was waiting to see if more people were going to report back to the site about it first.

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Well, since i am ready to pop anything i might just try it without Keppra for the sake of the community. I have a VEP and MRI coming up on monday though and i am still not sure my doc is with me fully on Sinemet, even if she still prescribes it. I also wanna look up the COMT-thingy with her first since i respond very well to DA:s. I hate that they shut down GP or else i would get it and try it on my own. Both Keppra and flunarizine acts on the calcium channels, since Keppra has others indications as well, a comparsion would be really interesting. There is no need to have more mechanisms if actions going on then necessary, causing potential side fx etc.

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Well, since i am ready to pop anything i might just try it without Keppra for the sake of the community. I have a VEP and MRI coming up on monday though and i am still not sure my doc is with me fully on Sinemet, even if she still prescribes it. I also wanna look up the COMT-thingy with her first since i respond very well to DA:s. I hate that they shut down GP or else i would get it and try it on my own. Both Keppra and flunarizine acts on the calcium channels, since Keppra has others indications as well, a comparsion would be really interesting. There is no need to have more mechanisms if actions going on then necessary, causing potential side fx etc.

Be sure to let us know how Flunarizine is if you decide to try it.

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ok cool great post.. im corrently on Keppra 1000mgs AM and 1000mgs PM

Im not notecing big changes yet,

I would like to add Flunarizine tho i dont think it is availabe in Australia :( are you aware of any other way of getting a hold of it? Thanks

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although not licenced in the uk, i think it is still available on the nhs if doc thinks its worth it. He will just have to explain to you that it aint licenced and so you accept a higher level of risk. There may also be a delay as it wont be stocked in your local pharmacy but will need to be brought in. I may be wrong but this is how i understand it. I'll give it a try, but not likely i think (previous attempts at getting drugs not always successful).

shaolin - i would encourage you not to restrain yourself from trying new treatments because you find disappointment too painful. You seem to get your hopes too high about anything you try then are inevitably disappointed. But the approach of this community really needs to be about throwing enough shit at a wall and maybe some will stick. Nothing ventured, nothing gained etc. If nothing happens, what have you lost? Nothing. Except maybe suffering some side effects. Keppra, sinemet, flunarizine - none of these are silver bullets but just have a chance of being of some benefit to some people. Once you appreciate that then you wont get your hopes high. Even if you cant control yourself being dissapointed, try the vipasana approach and just bear it with equanimity for the wider good. However you manage it, if you have access to flunarizine i would ask you to get some as not everyone here has a tame doc or other ways to get it so we need knowledge from people that do. Sorry for waffling.

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ok cool great post.. im corrently on Keppra 1000mgs AM and 1000mgs PM

Im not notecing big changes yet,

I would like to add Flunarizine tho i dont think it is availabe in Australia :( are you aware of any other way of getting a hold of it? Thanks

It is available here, I have it prescribed. It was harder to get though, you may need to talk to a neurologist.

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As an admin, i am a bit uneasy about posting this but since i have a rapid response to meds, i would gladly try this out. Too bad Goldpharma stopped shipping to Sweden but if there is someone with this substance i would as said try it out. My doc is pushing me about the meds i already have prescribed and dont wanna risk them by arguing for new meds.

If anyone could directly me to a solid/legit place to order i would be thankful or if someone has some spares to send.

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I have an appointment with my old doctor a week from this Friday and I will mention Keppra (ive been on it before) and Flunarizine. I'm bright with explaining things to people who can't seem to understand it on their own and that's the problem with most doctors so I've been able to get my GP to come around.

I'm probably going to ask to go back on Klonopin at .25mg and slowly go up again.

I will post back here when I regain access to the meds again.

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Congratulations man....I am nearing twenty years of this nonsense as well. I will try the low dose Keppra...what might you suggest? Seeing as you benefited so much I'd likely try exactly what you did...thanks.

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Anyone else looked into this further?

It seems that Flunarizine, like Clonidine, works on Calcium transmission. This is a mechanism that seems to be involved in HPPD's pathogenesis, and has potential for future treatment ideas. I have yet to study the ins and out of this mechanism in HPPD, but so far I have put off research, as I will most likely get treatment soon. However, once I get my cognition back (god I hope I get it back, I loved my cognition more than anything in the world), I will do my best to research it. I consider studying Neurology once my mind allows me. As with many medications, I am sure there are other agents with a similar action, so perhaps for those of you willing to test out this good news for yourself, consider a comparable substance.

EDIT: I re-read the first post.. Seems you would know a hell of a lot more about Flunarizine than me.

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Somehow it has an effect on dopamine systems http://www.journals.elsevierhealth.com/periodicals/prd/article/PIIS1353802001000062/abstract

 

 

It causes they same side effects of antipsychotics (antidopamine):

 

"Like cinnarizine, this medication can cause drowsiness, and is ineffective against migraines once they have begun. Flunarizine is also known to cause depression, tardive dyskinesia and parkinsonism in individuals who are predisposed to these conditions, particularly those 55-years-old and older." - http://www.tardivedyskinesia.com/causes/flunarizine.php

 

 

 

Basically, the med has anti-seizure quality.  Since HPPD brains are pre-seizure, these types of meds can be useful.  Keppra is anti-seizure.  Klonopin is anti-seizure.  Sinemet is not, though Dr A's trial demonstrated how increasing dopamine can (30-50%) help disinhibited (pre-seizure) brains.

 

 

Survey,

 

Not that it has been well over a year, how are you responding to Flunarizine now?  What is your current dose of it and of Keppra?

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Hm going to see a neurologist tomorrow maybe ill ask or wait until I see the psychiatrist.i really don't wanna do keep par again my memory is awful but i seem to recall some bad side effects.probably wasn't on it long enough idk. This sounds interesting especially at such a low dose.

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