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.

i have this problem as well I have noticed a reduction in the frequency that I get them. I had them really bad about 4 months ago but now they are almost non existent apart from when I look at bright lights but that's normal. It's basically a problem with sensory gating in your visual cortex so neurons keep firing after the stimulus has been removed. Your sensitivity has been increased to outside visual stimulation. Normally with sensitivity the more you are exposed over time the more it will gradually fade. If it's really bad then sunglasses will offer temporary relief in bright conditions. As with any hppd symptom the more you focus on it the worse it tends to get so just try your best to live with it and it will sort itself out.

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.

I'd be interested in US. I am attempting discontinuing SSRIs now and it may be a while until I'm completely off. Please keep me in the loop. Would I be in charge of my own neurofeedback sessions? Sort of fuzzy on how that would work.

Yeah. It could be that my symptoms were progressing on their own.

I am not even sure if I have hppd or if it is persistent migraine aura.

That's cool. I was on it and my symptoms worsened and never returned to normal after stopping.

K.B. Did your symptoms improve immediately after stopping Lamictal?

Kellen. How long you had hppd now??

Vonnegut.

Read your post earlier.

I have been on Paxil 15+ years. I've tried switching and discontinuing many times with no success. My hppd seemed to be under control for at least the past 10 years.

(I had stopped smoking pot).

Was under high stress and smoked pot again for first time in 8 years about 8 months ago. I started getting trails, severe light sensitivity, headaches, afterimages, etc. soon after smoking again.

I'm still on Paxil and my doc wants to switch to something else, assuming the Paxil just stopped helping.

Was also put on a slew of other meds for hppd with no help.

Yeah.

I tried:

Lion's Mane

B2

B12

Magnesium chelate

CoQ10

Butterbur

Also was prescribed:

Paxil

Klonopin

Clonidine

Lamictal

Verapamil ER

Nadolol

I'm still on magnesium, Paxil, B12, and Nadolol.

Saw my doc recently and he wants me to switch from Paxil (which I've been on for 15 years) to Lexapro. The Paxil used to help with anxiety and depression, but has since stopped.

My visuals and headaches all started up again or worsened about 7 months ago and they are still getting worse.

Do you have any suggestions for switching from one SSRI to another? He wants me to just stop one and start the other but I fear withdrawal effects. Do I need to cross taper??

Damn.

That's pretty fortunate.

My symptoms are now at the worst they've ever been despite abstinence from drugs and alcohol.

I'm 7-8 months in and everything is worse now than they ever were. Seem to be developing new symptoms every week.

How bad were your visuals trip? Afterimages? Trails? Starbursting? Light sensitivity?

How long did they last?