mycall81 Posted September 28, 2015 Report Share Posted September 28, 2015 So I STILLLL have no idea what I'm dealing with - pure HPPD, HPPD flare with associated migraines, HPPD + new daily persistent headache, HPPD + Lyme disease, just visual snow syndrome, a CSF leak?? All I know is that I've tried a few different meds to try and control the headaches since they started 7 months ago. None seem to have helped... -Lamictal: up to 100 mg daily. While on it, my headaches may have improved slightly. Also, my light sensitivity may have lessened. However, while on it, I noticed my afterimages changed from a faded white to clear complimentary colors, so I slowly weaned off it. -Verapamil ER: up to 120 mg daily. Went on this after Lamictal. I was also on a slew of supplements at the same time (lions mane, B2, B12, magnesium chelate, coq10, and fish oil). I was on this for 6 weeks and again, only saw steady worsening. -Nadolol: on 40 mg daily. Started to see a new headache specialist and he thought beta blockers were a better option for what he thinks is NDPH. He also thinks I do not have HPPD, but pure Visual Snow Syndrome, likely onset by migraine. He thinks I probably won't be able to successfully treat the visuals, but should be able to get he headaches under control. If only!!! So I also saw a Lyme specialist who thinks I probably have Lyme. I tested positive on the initial screen twice. But the western blot was negative both times - not a single positive band. This all started around a time of high stress and a time when I felt sort of ill with a viral illness. Also, I had smoked pot for the first time in years 1-2 months before the headaches kicked in. The headaches feel like they are deep in my head, like behind my sinuses. MRI was negative. Had an MRA of my neck today. I want an MRI with contrast. This Lyme specialist wants to put me on Minocycline for an extended period. He believes it will definitely help me. Interestingly enough, Minocycline and doxycycline are both used to treat NDPH with some success. I fear trying anything else. I'm so sick of being on meds, but something's gotta give. I'm hoping someone here may have SOME idea as to what I'm suffering with. I don't have fevers or a rash. No significant joint pain. Just a headache, usually right sided, severe light sensitivity, and bad negative afterimages. So what do you think?? HPPD? HPPD with a 'twist' of Lyme? With migraines? Just VSS? NDPH?? Any thoughts on Minocycline? The new doc also suggested I get off Paxil, which I've been on for 15 Years. He suggested I try Effexor, but I've read too many horror stories. So we discussed transitioning to something with a longer half life like Prozac. I just wanna be done with this headache. Ahhhhhh. 2 Link to comment Share on other sites More sharing options...
Mr.50's Posted September 29, 2015 Report Share Posted September 29, 2015 Hey I'm in the hppd group on Facebook read your post about this earlier, Minocycline made my visuals, dp/dr and brain fog a LOT worse Link to comment Share on other sites More sharing options...
mycall81 Posted September 29, 2015 Author Report Share Posted September 29, 2015 Great. Did it permanently worsen them? Link to comment Share on other sites More sharing options...
mycall81 Posted September 30, 2015 Author Report Share Posted September 30, 2015 I didn't hear back from you on FB. Did your visuals etc return to normal after stopping the Minocycline?? Link to comment Share on other sites More sharing options...
Mr.50's Posted September 30, 2015 Report Share Posted September 30, 2015 Yes they did(I'm blocked from posting on Facebook right now because some Whiney feminist cunt) but I feel they didn't return to 100% the same Link to comment Share on other sites More sharing options...
mycall81 Posted September 30, 2015 Author Report Share Posted September 30, 2015 In what way are they not 100%? Howling have you had HPPD? Link to comment Share on other sites More sharing options...
umit Posted October 1, 2015 Report Share Posted October 1, 2015 hi why you dont try to walk 1 hour atleast a day its creats wonders for brain chemistry and dopamine and other neurotransmitters are you not tired to try meds or supps with no results i did that and after 3 months i realy notice a big improvement in most of my symptoms even for the most disorders the drug company developted not a succesfull drug for complex disorders the brain knows the best way to recover i give you 100 precent you dont wil do it for nothing Link to comment Share on other sites More sharing options...
mycall81 Posted October 1, 2015 Author Report Share Posted October 1, 2015 I don't believe that. Sorry. Everything is worsening. Link to comment Share on other sites More sharing options...
umit Posted October 1, 2015 Report Share Posted October 1, 2015 soon as you back home you wil geth back to baseline buth every time you do you wil improve your health more and more if not i gues we need to realize there is no better treatment then sport because the best way to create dopamine and all other stuff in the brain is this way Link to comment Share on other sites More sharing options...
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