As always, I really appreciate the help everyone. I went from a week ago swearing off all drugs, to thinking that is the only thing that will help me. I have some concerns that I hope you guys can help me with.
First of all, as I have stated already, I am absolutely terrified of any kind of AD, as when I came off the Nori, all of these things started. The theory that you guys talk about, that the Nori was suppressing the migraines does make sense, but to me it also makes sense that the Nori really messed with my CNS and eyes, and left these horrible eye symptoms. I have read and talked to countless people who had this same kind of thing happen when coming off an AD, especially a Benzo. Especially the floaters and light sensitivity. So obviously I now have a fear that going on a new drug could make things worse, or maybe better while on it, then worse again if I ever come off. I really do not like the idea of being on a brain altering drug for long term.
Now regarding my eyes symptoms, besides the the light sensitivity, or I guess photophobia, even though it is really only sun light and very bright rooms (I feel about 10 times better at night. Street lights, head lights, none of those things bother me). So I want to describe my problems and hopefully get some reassurance that these are actually part of migraines. With a few of them, I can find no information on how they would relate to migraines. I also brought up migraines to my Opthamologist and Neuroopthamologist and both said these symptoms are no associated with migraines. On the other hand, they had no answers for me whatsoever…
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Floaters: This is the first thing I noticed about half way through my taper. I went from 100mgs to 0mgs in about 6 or 7 weeks, under doctors orders. They even told me that towards the end to take one 25mg every other day. From what I have learned, both of these methods are terrible ways to come off an AD. Way too fast and alternating days is just bad. Any how,
within a few weeks of my ween, I started to notice the cell like, crystal clear floaters when looking at the sky. Then the spiderweb, lint looking black ones any time I was outside or near a white wall or bright surface. I kept thinking these would eventually disappear, maybe just a withdrawal symptom from the drugs. I still have them today and they are not much better. They do not give me as much anxiety, but still a nuisance. Now, obviously I have read all there is to know about Vitreous Floaters. I have a feeling my floaters are not “real” ones for a few reasons. One, before this I never had any eye problems at all whatsoever. My vision is perfect. I am too young for “real” floaters, only being 28. I also find it impossible to literally end up with a large amount of floaters over night, for no apparent reason. Another reason I don’t think they are “real” is because my Opthamlogogist looked at my eyes extensively twice in the last year, and can see no floaters. He should be able to see “real” Vitreous Floaters. The same went for the Neuropthamologist. She extensively looked at my eyes for floaters and could see none. They both said my eyes were “perfect”. Can a migraines problem, especially one dealing with bright light issues, make me perceive floaters that are not actually there? In theory, could they disappear if I fix my migraine problem?
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Scheerer’s Phenomenon aka Blue field entoptic phenomenon - en.wikipedia.org/wiki/Blue_field … phenomenon
This problem has seemed to only get worse. I didn’t notice it much at first, probably because I was avoiding looking at bright objects to avoid the floaters that were scaring me. A few times when I didn’t have my shades on outside, I noticed them, but just kinda ignored it. Eventually it became hard to ignore. I can now even see those little sparkles and sprites floating around with my polarized shades on. But if I don’t have my shades on I see floaters, have trouble with the bright light, and see these little sprites floating around the sky or any other bright object. I will even see it indoors is a really bright, white wall is being hit with light. In the last 3 months of so I started noticing it on the TV screen, whenever there is a sky or bright white screen on the TV. I just can’t escape it. Now anything you will read will say this is a normal thing for the eye to see. I would say maybe, if you tried really hard, someone could see it after staring for a few minutes. But I don’t see it as normal to see this all the time, every time, especially since I never saw it once or knew what it was before my taper. This is currently the #1 thing that is bothering me. Of course I can’t really find any relation to migraines, unless of course my senses are just really heightened now. I have read that once someone “learns” how to see it, they can’t turn it off. I hope this is not the case… I can’t stand this any longer.
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Light Sensitivity: The first few months when the VN hit, about 22 months ago, I noticed I felt strange under sun and fluorescent lights. Just kinda made my head fog worse. It didn’t cause dizziness or make me feel any worse, just was uncomfortable. For this, I was put on the Nori for “possible” migraines, even though we knew for sure I had a very large (73%) vestibular loss. I took it, thinking that it would help with the migraines and help curb my anxiety over all of the problems I now had. I kept thinking it would help with my head fog and some of the balance problems. It really didn’t seem to help with anything. Sun light and fluorescent lights were still a problem, making me feel weird, but I didn’t need sunglasses (like I do now) and had none of the above mentioned eye problems. The only eye problems I had were with motor functions which VRT has really helped (not all the way, but much better than I was a year ago). VOR 1 and VOR 2 as well as Gaze Stability has really helped these problems. It was only AFTER I got off the Nori that the light sensitivity got much, much worse, as well as the above mentioned symptoms. I don’t have episodes where light bothers me, it always does. It also does not make anything worse… I don’t get headaches, nausea or dizziness. I no longer have any dizziness, just off balance and head fog. The light problems never make me feel “worse”, everything is always the same, day to day, I just can’t stand being in sun light or a bright room. It for sure confuses me more. This is another thing many people experience when withdrawing from an AD. I am NOT saying that is what happened to me, but this has been my theory for the past year since mine started right when I got off.
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Darkness: I’d say only in the past few months have I had problems with darkly, lit rooms. Pure darkness is fine. Eyes closed is fine. but is there is just a little bit of light I get kind of a grainy vision, a lot like visual snow. I also experience visual snow in the morning upon waking< only through one eye at a time. This grainy, visual snow thing scares me the most since I know some people can get it constantly for life. Since I rarely see it though, it does not cause too much anxiety. I just fear it getting worse, which most of these things seem to be getting. Anyone else experience this? Another possible migraine thing?
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Dehydration and Dry Eyes: In response to the above post, I realize what dehydration is. You seriously think I don’t try to rehydrate myself? I have been drinking nothing but water, Gatorade and coconut water to try and rehydrate, but I am always thirsty with dry mouth, dry lips and dry eyes. I have had this ever since my taper too, and of course assumed it was withdrawal. My doctor actually commented on my blood work and said it showed I was dehydrated. I am not sure what else I can besides keep drinking…
So I hope this all makes sense and you guys can understand why I am so distraught over all of this. This last year, dealing with the eye stuff, has actually been worse than the first year dealing with the dizzy stuff. If getting off the Nori caused all these problems, does that mean it was working? Was I not feeling better while on it because I was not doing proper VRT yet? I know the VRT has been helping a lot, but right now besides all the eye problems, the only other things I am dealing with is brain fog and the fact that I wake up every morning feeling like I was hit by a truck. No more dizzy spells, head pressure, rarely get the neck and shoulder soreness. I know I still need VRT because my balance is off and my eye gaze and head turns are still “off”. I still have this awful clicking and crunching noise in my ears every time I swallow which all started when the VN was hitting me at the beginning, so I assume it is just damage to my E Tubes and will never improve. I was also diagnosed last week with Chronic Sinusitis (CAT Scan), so was going to start antibiotics for about 6 to 8 weeks per my GP. This same GP I was going to ask about the Celexa. Is it bad to start both these drugs at the same time? Is it safe to have a GP, who probably knows nothing about migraines, prescribe me AD’s? How will I know how to start and when to increase? How do I know if I should use Celexa and not the Nori again? So many questions I have and I am so terrified that things will just get worse…
Sorry for the long post, I had a lot on my mind this weekend.
