mycall81

I have the same fear... MS, neurologic Lyme disease, spontaneous intracranial hypotension. They can all have similar presentations and for those of us who have worsening symptoms that include physical sensations like paresthesias, numbness, headaches, blurry vision, etc., the natural thing to do is worry about progressive disease processes. I have been assured and reassured by neurologists, neuro-ophthalmologists, headache specialists, and others that this is not a progressive neurological disease, but rather, an extreme form of migraine with persistent aura symptoms. This doesn't put my mind at ease however, because who is to say this is even reversible. No medication or "tincture of time" has helped. The fact is, I develop new symptoms almost monthly and my existing symptoms just keep worsening. Anyways, I do think it wise that you be evaluated by an experienced provider. I wish you luck and hope there isn't anything more sinister underlying your HPPD.

Anyone else developed jaw pain/headaches in conjunction with their other symptoms? It seems to be worsening. I grind my teeth every night now. Headache every day for over a year now. Thoughts? Suggestions? Gonna go see TMJ dentist but they apparently use Klonopin for therapy ????

On my 12th month with only worsening to show. Whatever happened to time and abstinence will result in recovery???

Trip. Did you have headaches? Visual. I'm considering trying Gabapentin or possible Trileptal. Started nortriptyline (doesn't have any dopamine effect though). Considering coming off Paxil. I've essentially been diagnosed with new daily persistent headache which has no cure and is generally regarded as permanent. My symptoms onset soon after some sort of viral infection (but also within a month or so of last smoking weed-after which time, I had a migraine).

I'm sure it has been brought up many times but for anyone out there with some improvement of photophobia, can you provide me with tips??? I'm now just under a year in with constant headache, severe photophobia that immediately worsens the pain, worsening afterimages, etc. It seemed to start soon after weed and stress. Been in Paxil for many many years. Want to come off it but scared to. Doc started me on nortriptyline to try and address the headaches. I'm certain that the headaches are a direct response to light sensitivity. Any stories of light sensitivity improving???

I have recently developed the burning eyes issue. I wonder if it is a direct correlation to constantly looking for visuals, keeping the eyes open and staring resulting in dry eyes. Either that or eye fatigue due to the heightened sensitivity to light. Either way, I still consider HPPD to be a migraine equivalent.

This gives me SOME sort of hope that it can improve. I must admit that, at times, I become super obsessed with looking at the afterimages. It gets to a point that I can't stop looking for them. Gaz, how long did you have afterimages like this? Visual. What would be an explanation for continued worsening/intensifying of afterimages? For instance, I did not have positive afterimages for the first 6 or so months, then I developed them. Trails are getting more and more apparent. People on other forums harp on about Lyme disease. I don't buy it. I was told by a researcher of palinopsia that I had BOTH HPPD and persistent migraine aura (mainly due to the constant headaches).

Well aware of that. It was a momentary lapse of reason. I was essentially 100% better and this all started after smoking a few times. I had a migraine though which seemed to trigger everything which is why I believe it is more a persistent migraine overlying HPPD.

How long Daaar?

Good to hear. Mine seems to worsening ????????

Did that fade?

Granite. How long have you had them? Had you tried meds for it? My issue is this. I just smoked pot prior to his starting. Other than that, I had a migraine afterwards. I can't be sure which caused it. I want to know which and I want to know if it will keep worsening.

You had complimentary colored afterimages?? Blue turned to yellow for instance.

Hey there. I get bad negative complimentary color afterimages. For instance, anything blue a glance at turns to a bright yellow upon looking away. Does anyone else have this??? If you did/do, is it possible for it to fade away??? I also get real bad afterimages from my face in the mirror. Same question...can this fade? I'm at 9 months of this and still getting more detailed.

Does anyone have an actual full copy of the Keppra trial. Lamictal seemed to not agree with me. Nadolol not helping the headaches.