mycall81

What does everyone think the head pressure is a result of?? Is it simply light sensitivity? Anxiety? Is there a new daily persistent headache co-diagnosis? Migraine? My head pressure feels like it is deep in my head, sometimes in the roof of my mouth or behind my sinuses. It even feels like it's in my teeth. Could it be a form of TMJ? Also, does it tend to fade with time as do visuals (supposedly)? My head pressure and visuals continue to worsen.

Thanks. I still believe I need some sort of medical help. You can't ask someone to live with a daily migraine and not do anything medically about it. I am on the verge.

Well, things are massively worsening. No reason to think it's going to improve. So, what other chance do I have?

Does anyone have a full copy of the Keppra Study? I would like to bring it into my next neurologist appt. I've been thinking of giving it a try next. That or Depakote. Something needs to give...it's all continuing to worsen.

I don't believe that. Sorry. Everything is worsening.

In what way are they not 100%? Howling have you had HPPD?

I didn't hear back from you on FB. Did your visuals etc return to normal after stopping the Minocycline??

When you took doxycycline, did it make your symptoms permanently worse?? Or did it let up after you stopped it??

Great. Did it permanently worsen them?

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.

Sad. He woulda loved us HPPDers.

Inspired stuff. Sounds like you are doing a good job just living life. I'm dealing with a major recurrence/flare and it's definitely taking a toll. Too much seeking for the answer. The physical pain in form of a constant headache is the worst problem - in addition to the insane palinopsia, I'm barely hanging on. Did your visuals subside with time? Did you use any supplements for your recovery?

Nice work. So how did you convince your doc to order a Scintography scan? Hard to get one here in the states. Also, when he received the results, did he give any recommendations or did he just say deal with it? That is a lot of supplementing! It worries me to try them all. I would need to stop all of my current ones individually to see if they are helping/hurting.

Thanks K.B. I'm not on any antibiotics. I'm weaning off Lamictal. I've been on Paxil for 15 years. I was started on Verapamil ER 120 mg daily because I have a daily migraine-like headache since this all started. My stack of supplements is pretty extensive: -magnesium taurate 400 mg daily -Lions Mane 4g daily -Fish Oil 1000 mg at night -B Complex -multivitamin -Butterbur 200 mg daily -B2 500 mg daily -CoQ10 ubiquinol 200 mg daily I think the main reasoning for many of these supplements is that I have a daily unilateral headache that feels like a migraine. I am uncertain if I have a permanent migraine or HPPD or both. The goal is to treat the migraine and hope it resolves the visuals. I will be attempting to slow with the coffee. I eat plenty of fruits and vegatables. Would anyone recommend I cut out any of these supplements? If so, do I taper or just stop??

That sounds pretty gnarly. Howing did you have all the visuals?? I'm glad you are able to see 'clearly' now. DP sucks. Hopefully it will slowly resolve.

MissJess did your HPPD go back to baseline after stopping Lamictal?

Wow. Which antibiotics did you take and for how long?

Trip in Hell. What was your HPPD like when you had it??

Okay. It may have been approached before, but has anyone here been suspected of having Lyme? I'm getting steadily worse over the past 6 months. Worse headaches, worse afterimages, more fatigue, and more depersonalization. I have not been drinking alcohol, don't do illicit drugs, drink one coffee daily, take a host of supplements (supposedly helpful with HPPD), eat well, and am trying to reduce stress. Despite all this, everything continues to worsen. There must be some explanation besides "you're thinking about it too much." There's no reason that HPPD should continue to worsen over 6 months without a reason.

Good luck with school. No more drugs.

I don't think that's it. I'm sure there's some truth to that, but I've just started seeing positive afterimages and other new visuals for no reason. I couldn't make this shit happen just by thinking about it.

I used to. Any exertion now spikes my visuals to the max. HPPD should not get worse. Even Dr. Abraham says that.

Has anyone seen relief with this? I'm so at the end of my rope. No matter what happens, I keep getting worse and worse afterimages. I have no where to turn. I think about ending things every hour. Why is it worsening??!!

Thanks for sharing. Good luck with the Foundation.

Wow. So 15 years? Any improvement?