Hi guys. I've been hesitant to post because I don't want to jinx anything or give anyone false hope. But I seem to be having some success with Nifedipine. As most of you know, my biggest complaint is temporary white (and sometimes dark) spots that are occurring all day long, 24/7. I have had long lasting spots that have lasted for months as well. Dr Flammer suggested working up to a 3 mg dose of nifedipine. I have been on the medicine for almost two months and am just beginning to notice a substantial decrease in these spots. It is not something that has worked over night and it hasn't taken them away totally (yet) but I am getting better.
Nifedipine is only available in the US at a minimum 10mg dose in a liquid filled capsule. So, I've estimated the dosage which I think is actually slightly higher than 3 mg. I pierce the capsule with a needle and take 3 drops, 3 times a day. I put the needle back in the small hole and put it in an empty pill bottle in the medicine cabinet to keep it away from the light. It breaks down in light. It has a very short 1/2 life so I have been dosing every 4-5 hours. It does not seem to have affected my blood pressure like nimodipine did so that is good!
My current regimen is as follows
3 drops of nifedipine, 3 xs a day
2 magnesium glycinate capsules from PURE (120 mg mag. each) 3 xs a day
1 baby aspirin
1 Ultra Mag from Source Naturals at bedtime (a blend of magnesium types)
I also have increased my water and added himalayan sea salt to it
I had a few weeks of travel this month and my routine was not as stringent. I noticed the spots returning if I didn't take all of my magnesium or get my nifedipine dosage in at the right time. Travel brings a complete disruption of diet and sleep too so that could play a role.
I want to give you all hope. I'm not cured but I'm better! I plan on emailing Dr Flammer and asking him for further recommendations. I might try increasing the nifedipine as long as it doesn't affect my blood pressure.
Hey guys! So ive been keeping up with everyones posts about this weird symptom and well, I figure its time to get involved. Please bear with me, it might not seem at first that im in the right place but i can assure you i am ;)). About 4 weeks ago, I was out doing a bonfire and drinking with some friends. Well i must have grabbed ahold of some poison ivy or something of the sort while foraging for firewood. Have had poison ivy so many times I cant even count, but this will be the first time Ive had it in years. Anyway, it turned out so bad that i had to go get steroid shots for it (kenalog and prednisone). That helped but just a few days later once the poison ivy went away, I broke out in hives which had never happened. I went and again got another cocktail steroid shot and was prescribed a high dose 60mg of prednisone to take for two weeks weaning off over that period. After about 3 days, i started getting bad side effects. Low heart rate (50bpm), urinating at night which i never did before,bloating, and then here is this new spot in my vision!!! Looks exactly like the afterimage of a camera flash but can only see it for a split second when i blink. From reading through everyones posts, it seems we all have something very similar going on. I too went throuh all of the eye doc visits to be told i have perfect vision amd no visible evidence of retinal damage. But i still have the damn spot! Im a graphic designer so i use my eyes heavily on computer screens like 24/7 lol, which is probably terrrible, but i think its strange this happened after the hogh prednisone dose. Does anyone reading this have anything in common with this? We all need to start disclosing more about our daily lives and how we use our eyes, meds/supplements we take, all that if we are going to get to the bottom of this. I too also have anxiety which has long since turned into health anxiety so others who suffer such issues will understand the frustration and neurotic worry about this eye symptom when otherwise my eyes are and always have been perfect.
No, I don't have any other weird symptoms going on. Certainly no numbness or tingling. As for lyme, I am Australian and moved to the US after my symptoms developed. There's little evidence that Australian ticks carry lyme, though of course there are those who contest it. In any case, I grew up in the center of urban Sydney and don't recall ever even seeing a tick.
From what I've been told, optic nerve disease manifests in an absence of vision, not the manifestation of a noticeable positive scotoma, which is why it's so insidious - people simply aren't aware of a problem until vision loss is very advanced.
As for dealing with the fear of blindness and the unknown, I too spent years feeling paralysed by this condition and the what ifs. I left my job due to the stress and anxiety. (I was a journalist and magazine editor.) But it's so utterly self-defeating. I look back at all the energy expended and time wasted on worry, and could kick myself. When my worry was at its worst, I became very life-avoidant and isolated. I was fearful to open my eyes in the morning, I found it hard to eat, to interact socially, to live in the moment. I was endlessly distracted and googled and researched compulsively. Now, I still have moments when the fear grips me, but mostly I just get on with it. I view this eye problem like I view any of life's other uncertainties - the cancer I could be diagnosed with next week, the car accident I might have next month. Yes, I could get a big fat blind spot in my central vision, but what if I don't?
Has anyone identified triggers which cause their spots to 're-flare', and how long do people's re-flares typically last?
The last 3 days I have had one of my old spots flaring badly, and DAMN it is annoying. I really hope that it settles down ASAP.
matt
Just wondering how everyone is travelling. Been quite a while since someone has posted here!!
Matt
Well after a decent run I've picked up another seemingly permanent spot today. In the left eye just up from center. In that really annoying phase right now where it is extremely noticable. Can't wait until it fades.
Recently I started doing some weight training again. I wonder if that has anything to do with the flare up.