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Onemorestep last won the day on August 18

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About Onemorestep

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  1. Hi  I have had hppd for 2 years and its been a dessent into hell.. It started very mild  then anti histamines celexa made it worse..then i tried for a year to make it better  clonapam was always my go to but was aware of dangers os treated with respect.. The next big spike was lions mane... gabapentin as working untill inclusion of lamotragine and then boom up another level.   im no longer ina space where i can just live with it.  intense snow visuals  flies buzing around  tactile bugs 247 makes my life unbearable..  gutted as two years ago i could barely see any snow let alone the rest... I decided as a last resort before ending things to move to a hot beach and see if the weather and see might rebalance my nervous system.. every spike i have had never came down  just pushed me up...


    Right now i started keppra 1000  take clonaspam every other day  and started risperadone for tactile ahllucinations (  i am aware of the risks but i have no choice)


    I have carbomazapine clpbazam topimerate and phenoarbital as back up. i am thinking antipeileptics are my best chance for relief...  


    Would appreciate any advice  i eat well relax  etc  but ignoring my visuals and ignoring the tactile sensations is not piossible..I need treatmentt I know some people used peptides.. Im basically trying to save my life...so any thoughts ?

    1. Onemorestep


      Okay first off you must only try single medications at once. Otherwise you don’t know what hurts or what helps. 

      trial the Keppra first. It may take some time to start working. 

      we don’t know what causes hppd and this stuff is very very complex. I don’t pretend to understand what it is, especially for the individual. Just off the bat, I assume there are over 120 different types of hppd so that’s why everyone has unique reactions to medications. Not sure what drugs caused yours either!


      You call something an “epileptic”, like Keppra, but what I see is a drug that has about 15 different actions on the brain and several immune system modifiers. Just remember a drug could work and you won’t even know why because the mechanism of action hasn’t been studied in that brain region etc. 

    2. jat


      risperedone has bad effects in a lot of people so im holding off in that now.. stopping keppra and sticking to low dose kpin... i think i will try to heal naturally wit brain retrining and it feels like im stuck in some trauma loop so when i start to address that maybe i can see imrpovement  so good eating   healing immune system and getting out of limbic system loop.. that seems the best way to me.. most meds apart from kpin make this condition worse.. im just praying the spikes are temporary and not permenant

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