I'm Going Blind and Blacking Out. Please Advise!
September 24, 2006 8:10 PM Subscribe
I have neurocardiogenic syncope and my eyes are going. What should I do?
My biggest trigger is going to the doctor - any kind, it seems, except for the dentist. It took a long time to get a decent diagnosis, and in the interim, I went through a lot of pretty rough episodes during the various tests that ranged from EKGs to neurological exams. I went down every time. Eventually, I found a good doctor who administered a tilt table test, diagnosed me, and basically advised me to avoid the symptoms by avoiding the triggers. Yes, my doctor basically told me not to go to the doctor.
Fast forward 5 years and I go to the eye doctor because I feel my vision is starting to deteriorate from sitting in front of a monitor all day. I work in software development, so this is unavoidable. Of course, I experience another syncopal event and go down pretty hard. The optometrist is pretty annoyed, but says that my eyes are fine.
Fast forward another 5 years, and my vision has definitely gotten worse. It's so bad that I find myself asking people around me to read signs in restaraunts and bars. While driving, I can't read roadsigns until they are right on top of me. I've been putting off dealing with this for too long, and I need to go again. However, I just moved from Boston to south Florida, and I don't have a doctor I trust to help me out with this situation.
What can I do? I understand the basics of hydration, ingesting salt beforehand, and all that, but I don't feel like I am well informed enough on the topic, and I don't really feel like going to a new doctor and repeating all of the blackouts and associated traumas by myself.
Does anyone have any advice about how I should take care of this situation? I can't avoid it any longer, but I am very apprehensive about just "sucking it up" and getting it over with.
My biggest trigger is going to the doctor - any kind, it seems, except for the dentist. It took a long time to get a decent diagnosis, and in the interim, I went through a lot of pretty rough episodes during the various tests that ranged from EKGs to neurological exams. I went down every time. Eventually, I found a good doctor who administered a tilt table test, diagnosed me, and basically advised me to avoid the symptoms by avoiding the triggers. Yes, my doctor basically told me not to go to the doctor.
Fast forward 5 years and I go to the eye doctor because I feel my vision is starting to deteriorate from sitting in front of a monitor all day. I work in software development, so this is unavoidable. Of course, I experience another syncopal event and go down pretty hard. The optometrist is pretty annoyed, but says that my eyes are fine.
Fast forward another 5 years, and my vision has definitely gotten worse. It's so bad that I find myself asking people around me to read signs in restaraunts and bars. While driving, I can't read roadsigns until they are right on top of me. I've been putting off dealing with this for too long, and I need to go again. However, I just moved from Boston to south Florida, and I don't have a doctor I trust to help me out with this situation.
What can I do? I understand the basics of hydration, ingesting salt beforehand, and all that, but I don't feel like I am well informed enough on the topic, and I don't really feel like going to a new doctor and repeating all of the blackouts and associated traumas by myself.
Does anyone have any advice about how I should take care of this situation? I can't avoid it any longer, but I am very apprehensive about just "sucking it up" and getting it over with.
Response by poster: Thanks for the lengthy reply! I'm going to do a quick drive-by before I internalize the whole thing because I think it might help other people to clarify a few points you brought up:
The last optometrist I saw was at a Lens Crafters in a mall. He was "annoyed" because I didn't mention the symptom to him beforehand. My memory of the incident is a little hazy, but I recall it being liability related, which left me with a bad feeling about the whole situation.
The symptoms first presented themselves to me when I went to an optometrist in the more traditional setting of a private practice in a stirp mall.
The decrease in visual acuity is not related to the syncopal condition. Most of my family has excellent vision, including my grandparents and mother, and I have experienced improvement during long periods away from work, such as a 2 week vacation. I have a high quality set up and I am mindful to take periodic breaks, etc., so I don't think that environmental tweaks are the answer.
Mostly what I am after here is something like "I went through this, here's what I did and it helped," but obviously, I am grateful for anything I can get.
posted by feloniousmonk at 9:22 PM on September 24, 2006
The last optometrist I saw was at a Lens Crafters in a mall. He was "annoyed" because I didn't mention the symptom to him beforehand. My memory of the incident is a little hazy, but I recall it being liability related, which left me with a bad feeling about the whole situation.
The symptoms first presented themselves to me when I went to an optometrist in the more traditional setting of a private practice in a stirp mall.
The decrease in visual acuity is not related to the syncopal condition. Most of my family has excellent vision, including my grandparents and mother, and I have experienced improvement during long periods away from work, such as a 2 week vacation. I have a high quality set up and I am mindful to take periodic breaks, etc., so I don't think that environmental tweaks are the answer.
Mostly what I am after here is something like "I went through this, here's what I did and it helped," but obviously, I am grateful for anything I can get.
posted by feloniousmonk at 9:22 PM on September 24, 2006
I too, due to very low blood pressure (I lost a lot of weight), occasionally faint (and almost daily "near faint") I manage to stave it off at the "tunnel-vision" stage with an immediate sitting down.
This doesn't happen to me due to stress, but usually due to going from a crouch/sit to standing.
My eyesight has also been worsening.
In my case, I am certain they aren't related. I faint for a reason. As I get older my eyes suck more and more. Not the same issue. Unless I've misunderstood your post, I doubt they're related in your case either.
A gradual blurring of the vision as you age would be due to changes in your eyeball (the lens or shape of the eye). As far as I know, not directly related to the vascular issue you have. Get some contacts.
Oh, and when you get those contacts, warn your optometrist that you might faint.
posted by sourwookie at 9:24 PM on September 24, 2006
This doesn't happen to me due to stress, but usually due to going from a crouch/sit to standing.
My eyesight has also been worsening.
In my case, I am certain they aren't related. I faint for a reason. As I get older my eyes suck more and more. Not the same issue. Unless I've misunderstood your post, I doubt they're related in your case either.
A gradual blurring of the vision as you age would be due to changes in your eyeball (the lens or shape of the eye). As far as I know, not directly related to the vascular issue you have. Get some contacts.
Oh, and when you get those contacts, warn your optometrist that you might faint.
posted by sourwookie at 9:24 PM on September 24, 2006
Response by poster: I think number 2 is definitely the route I am going to take. I don't really know anyone here, but I might be able to ask someone from work. That kind of pushes a boundary, however, and I am hesitant.
I have taken some of the medications in that wikipedia article and didn't have a great experience with them. In the case of the beta blockers, they had a ramp up/ramp down period that caused me a lot of problems with side effects and overall, I'd rather pass out once than go through that.
That does remind me that I have had success with anti-anxiety medications (lorazepam and alprozolam). Any advice as to how one would go about asking for a prescription for something like that without a PCP? Can optometrists prescribe this sort of thing?
I am not really specifically why the dentist's office doesn't trigger this reaction, but I've had a lot of time to reflect on the situation since it developed, and I think that the dentist's office is better for two reasons: I can't see anything, and I am near to, if not completely, in a position with my head below my legs, so it's really hard for the associated blood flow issues to develop. That's actually one of the worst things about the optometrist for me; sitting there while they're flashing the different lenses by you, you don't really have anywhere to slump back into because of the standard design of the chair.
I am definitely going to mention this before I make an appointment to seek the advice of whoever I am seeing. I hope I can prevent the "you shouldn't be asking us, you should be asking a doctor!" type of responses by emphasizing that I am not seeking specific medical advice, but instead just general human contact style advice. To that end, links to forums or other communities related to the subject would be appreciated. I have looked and not had great success.
posted by feloniousmonk at 9:30 PM on September 24, 2006
I have taken some of the medications in that wikipedia article and didn't have a great experience with them. In the case of the beta blockers, they had a ramp up/ramp down period that caused me a lot of problems with side effects and overall, I'd rather pass out once than go through that.
That does remind me that I have had success with anti-anxiety medications (lorazepam and alprozolam). Any advice as to how one would go about asking for a prescription for something like that without a PCP? Can optometrists prescribe this sort of thing?
I am not really specifically why the dentist's office doesn't trigger this reaction, but I've had a lot of time to reflect on the situation since it developed, and I think that the dentist's office is better for two reasons: I can't see anything, and I am near to, if not completely, in a position with my head below my legs, so it's really hard for the associated blood flow issues to develop. That's actually one of the worst things about the optometrist for me; sitting there while they're flashing the different lenses by you, you don't really have anywhere to slump back into because of the standard design of the chair.
I am definitely going to mention this before I make an appointment to seek the advice of whoever I am seeing. I hope I can prevent the "you shouldn't be asking us, you should be asking a doctor!" type of responses by emphasizing that I am not seeking specific medical advice, but instead just general human contact style advice. To that end, links to forums or other communities related to the subject would be appreciated. I have looked and not had great success.
posted by feloniousmonk at 9:30 PM on September 24, 2006
Response by poster: I should clarify that the title of my post is a little sensationalistic. I am a product of my times! My vision is such that I can function normally, I'm just a little nearsighted. It's a quality of life issue that is steadily deteriorating and I want to put a stop to it before it does start to really impact my day to day life.
posted by feloniousmonk at 9:40 PM on September 24, 2006
posted by feloniousmonk at 9:40 PM on September 24, 2006
I am a bit confused by your diagnosis; most physicians would classify syncope as either neurogenic or cardiac, not both. What you describe is certainly consistent with neurogenic syncope, also known as vasovagal syncope. This Google search should get you started on learning more. While vasovagal/neurogenic syncope is generally not life-threatening, if it is keeping you from seeking care for other conditions, it should be addressed. As mentioned above the vast majority of health care professional have seen this before and should be understanding. Also as mentioned above driving blind, unlike the occasional fainting spell, is life threatening to both you and others. It sounds like it might be worth finding a nuerologist or other physician in your area who specializes in this sort of thing.
posted by TedW at 7:37 AM on September 25, 2006
posted by TedW at 7:37 AM on September 25, 2006
Response by poster: I just double checked my medical history and it's definitely written down as neurocardiogenic.
Just to reemphasize, I am not using the term blind in the clinical sense.
posted by feloniousmonk at 7:49 AM on September 25, 2006
Just to reemphasize, I am not using the term blind in the clinical sense.
posted by feloniousmonk at 7:49 AM on September 25, 2006
I wonder if finding someone who does house calls would avoid the trigger.
posted by winston at 11:17 AM on September 25, 2006
posted by winston at 11:17 AM on September 25, 2006
Response by poster: Good idea. I wonder if optometrists do such a thing... It'd certainly alleviate my concerns about having to drive home afterwards.
posted by feloniousmonk at 11:53 AM on September 25, 2006
posted by feloniousmonk at 11:53 AM on September 25, 2006
This thread is closed to new comments.
I don't know anything medical about your specific condition. But it sounds like your present goal is to get a prescription for glasses, without passing out. (That is, as I'm understanding your question, you are not literally going blind, but you need glasses. And the bad vision is not *caused by* the neurocardiogenic syncope, so you don't need to go to the whole-body doctor. Yes?)
So, three basic options:
1. Go and somehow avoid passing out
- Sites online suggest salt, Gatorade, compression stockings, a few other things. Sounds like you've heard that before. They also suggest some medicines (eg the wikipedia page does); maybe you could get a one-time prescription for one pill worth of such a medicine?
- Would an optometrist's office in the back of an eyeglasses shop be doctorish enough to be a trigger? It would not look very doctorish, although there would be some big measuring devices and an exam chair. But in mall shops, there's often just an area at the back of the store for exams -- that is, it's out in the open, in a store. (This might be bad: embarrassing if you pass out. But it might be good, if it was different enough to not trigger the passing out.)
- Any clue of why the dentist is ok? Maybe that gives you something to exploit?
- Would it help at all if you could come into the office in a wheelchair? You wouldn't have to walk, or sit-stand-sit-stand. And if you fall you don't have as far to fall. You can rent wheelchairs in a lot of places including most malls (I'm guessing esp. in FL). You could pretend to have an ankle injury if anyone asks; bring an ace bandage and call it Halloween. If you're getting a wheelchair and don't normally use one, it will be easier to bring a friend.
2. Go, and try to minimize the badness of passing out.
- Go at a time of day when they won't be very busy. (You could call a mall place ahead of time and ask when is their slowest time of the week)
- Tell the person making the appointment that you have this problem, and you might need (whatever you need... a quiet place to rest and recover? to be seated the whole time so you don't have far to fall?)
- Bring a friend if possible, so they can be there if you do pass out, drive you home afterward, etc.
- Explain again to the doctor at the start of the appointment -- maybe before you go into the area with the medical equipment?
3. Don't go.
- This just puts off the problem. But don't drive blind! If you're not going to go, try out the glasses in the drugstore that come in a few standard prescriptions; maybe one will work okay for you. This is not a great solution, because if it's off a little you might get bad headaches. But it would be better than driving without being able to see the road.
posted by LobsterMitten at 9:09 PM on September 24, 2006