lfreem02 Posted August 13, 2012 Report Share Posted August 13, 2012 My symptoms started abruptly with lightheadedness and blurred vision in December 2011. I have been dealing with multiple neuropathy symptoms every day since then, but the lightheadedness has been an issue every day. It feels like I am looking through a video camera when I am walking or driving (which I have stopped doing for now). I have episodes where the lightheadedness gets so bad that I feel like I am going to pass out. I am currently on midodrine, and started taking florinef three weeks ago. I have been having a new type of lightheadedness that hits when I am walking, and feels like I am so exhausted that I am going to pass out. I was doing a little better with it by slowing down a lot, but last week I had a really bad episode that nothing seemed to help. I was walking across campus to a meeting around 8:30am, and shortly after I left the lightheadedness hit. I slowed down my pace, but the feeling got worse. This time I felt weak all over, almost like I had the flu. I stopped a couple of times along the way to sit down, but it didn’t seem to help. After about 20 minutes, I finally decided to skip the meeting and return to my office. I continued to feel lightheaded and weak and after lunch. I continue to have these episodes, but not as bad as that one.I drink three liters of fluid a day, take salt pills and eat extra salt, and try to exercise daily. I am a vegetarian, and am on a gluten free diet to hopefully help with recovering from the neuropathy. I have continued to work full time, and try to do as much as I can tolerate as far as shopping, house work, etc. I am hoping if I keep pushing, one day I will finally feel better. The doctors are still not sure what is causing the neuropathy, and think that it is linked to an autonomic dysfunction. I have been referred to Vanderbilt, and am working on getting an appointment.Has anyone else experienced this? I have read about fainting, which I have not experienced, and change in position lightheadedness, but I am curious if this is normal for autonomic issues, if I can expect it to eventually go away, and if there is anything else I could be doing to make it less disruptive. Quote Link to comment Share on other sites More sharing options...
songcanary Posted August 13, 2012 Report Share Posted August 13, 2012 I started with blurry vision and lightheadedness too, although they came on gradually. I tried to push through it for a year and got worse. What finally helped was complete rest. I know you don't want to hear that LOL. But after about a year I was able to resume light activity very gradually. It has been a major lifestyle change for me, but I am feeling so much better. Wishing you a healthy journey! Quote Link to comment Share on other sites More sharing options...
bellgirl Posted August 13, 2012 Report Share Posted August 13, 2012 I agree with Songcanary, your body gets to the point where you can't keep pushing, rest when you can, and then gradually work your way up again. I, too was actually extremely dizzy/vertigo and had major vision problems, as well, to the point of almost making an appointment with a neuro opthamologist, but with meds, supplements, fluids, exercise, and resting when I can, I too, have improved, but I was sick for 13 years without medication. I've been diagnosed a year now, and with the right balance, I'm a lot better. Quote Link to comment Share on other sites More sharing options...
peregrine Posted August 14, 2012 Report Share Posted August 14, 2012 Your description of lightheadedness as "looking through a video camera when I am walking or driving" reminds me of what I describe as spaciness (or depersonalization, but I try to avoid using that term since it's dysautonomia-related, not psychiatric in origin). I feel very unconnected to my body and my surroundings - judging distance, moving around obstacles, etc are all very hard. I have also given up driving as a result of this. Does this sound familiar or similar to you?Mmm, also (edited to add) - I can be spacey for very long periods before I get presyncope, so for me it's not really lightheadedness or presyncope, more just a feeling of disconnection. Quote Link to comment Share on other sites More sharing options...
lfreem02 Posted August 14, 2012 Author Report Share Posted August 14, 2012 Peregrine - I do get an almost spacy feeling. It feelings like I am zoning out, but I lose control of it. Usually when I am tired I zone out and then snap out of it, but this I can't snap out of. I have been especially exhausted recently, so I don't know if it is playing a part in it being worse.I have set backs that last a couple of weeks, and then I find that one or some of my symptoms lesson or stop altogether. My left pupil used to dilate causing blurred vision, but that stopped a few months ago. I was experiencing severe pain in my left jaw, but it is very rare that it happens anymore. The flushing and burning in my left cheek has stopped, and so has the burning in my left eyelid. I am noticing that the cold burning in my left arm is getting better with this set back. It is almost like my body goes into an intense healing period, which takes so much out of me, and then has to take a break for a while. I still have symptoms, but the fatigue isn't quite as bad during the breaks.I am determined to beat thing. My goal is to feel better in time for the fall and winter, which are my favorite times of year to do things with my daughter. Quote Link to comment Share on other sites More sharing options...
anovello Posted August 20, 2012 Report Share Posted August 20, 2012 I too experience feelings of lightheatedness, dizziness, disorientation, blurred vision, visual distortion, migraines and spaciness. These are many of the underlying symptoms related to POTS/ dysautonomia that I experience on a daily basis . Some days are obviously worse than others, but almost every day I have these symptoms.I have had POTS now for about 6 years and have only recently within the last year and half had a diagnosis. For many years I let this illness and these symptoms debilitate me, until one day I just accepted that right now I cant control everything I am feeling however, oneday I hope to, but in the meantime what I can control is how I will let this illness dictate my life. I now live a pretty "functional" life. I graduated from college not too long ago, I work 4 days and week, I still manage to go shopping when I want, clean my house, and still maintain somewhat of a social life. I hope to one day not have to suffer through these symptoms everyday. Many days I am tough and I try not to let all of this effect my place and space in this world, but I am human and I know how frustrating waking up everyday feeling like crap is like and because of that I understand that every day having this illness it is a constant battle. But I will keep fighting the battle!! Quote Link to comment Share on other sites More sharing options...
yogini Posted August 21, 2012 Report Share Posted August 21, 2012 Dizziness is my worst symptom. How did they conclude you have neuropathy? It heped me to monitor my HR and BP and usually my dizziness was tied to low BP or high HR. My dizziness has improved over time once my HR and BP were stabilized. Meds have been a great help for me with my symptoms. Quote Link to comment Share on other sites More sharing options...
lfreem02 Posted August 21, 2012 Author Report Share Posted August 21, 2012 The neurologist I saw has been dealing with something similar with his wife for about two years. He has come to the conclusion after no one else could seem to help her that she has gluten sensitivity, and it finally caused neuropathy. My symptoms of burning/cold in my left arm, left cheek, left eye lid, and legs, are symptoms of neuropathy. He made a comment that when he did the hammer test with my knees, that I had a hypersensitive reaction. I also couldn’t walk a straight line due to the weakness in my legs. I have also experienced pupil dilation in my left eye that caused blurred vision, but has stopped, and I think it is linked more with the autonomic dysfunction. I can deal with the neuropathy; it is the lightheadedness that is my major problem. I had a big day on Sunday. I went shopping and to a movie with my daughter. I was lightheaded anytime I was standing, and felt like I was approaching the point of passing out a few times, but I was determined to have a fun afternoon with her. Quote Link to comment Share on other sites More sharing options...
lfreem02 Posted August 21, 2012 Author Report Share Posted August 21, 2012 I just returned from seeing my GP, who has been out on leave. She and I talked for a while, and she is going to check my vitamin D levels, and a few other things in my blood, and has ordered a nerve conduction study. We are also trying Nifedipine 10mg three times daily. I am taking Midodrine, and Florinef, but am not seeing improvement in my fatigue or lightheadedness. I noticed after recovering from the tilt table test with nitroglycerin that I felt better than I have since this all started in December. So, she is willing to give this a try to see if my issue is actually that I am not getting enough blood to my heart and brain due to the blood vessels not opening up enough. My blood pressure was 140/90 (which is high), and my heart rate was 64 (which is low for me) at my visit today. The only time I have seen my blood pressure drop was during the tilt table test (80/60). She did warn me to be very careful and watch my blood pressure closely for the next week since we don’t know how my body is going to react. If the Nifedipine doesn’t work, there is another vasodilator that I can try, and if that doesn’t work, we are going to try an SSRN. I am still waiting to hear back from Vanderbilt, so I am glad we are still pressing forward until I can get an appointment. Quote Link to comment Share on other sites More sharing options...
lfreem02 Posted August 22, 2012 Author Report Share Posted August 22, 2012 Well, pooh! That didn't work so well. Heart rate went from 83 - 162 in about an hour after taking Nifedipine 10mg. Went to the ER, and of course everything checked out fine. The ER doctor said that he bets I am tired of people telling me they don't know what is wrong with me. Quote Link to comment Share on other sites More sharing options...
targs66 Posted August 22, 2012 Report Share Posted August 22, 2012 Apologies if you already know this, but were you aware that midodrine can cause a slower heart rate? I took it for a bit, but I found that when I was doing anything reasonably quiet (working at a computer, reading, etc.), I got extremely woozy. I started monitoring my BP, and even when it was reasonable (say, 98/67), my HR was very low for me (around low 60's). (I don't have POTS; I have neurally mediated hypotension, so maybe there's a connection.) I just wonder if the midodrine could be causing your lower-than-normal HR and causing this new fatigue and lightheadedness.Best of luck sorting this out. I agree; the woozy feeling is miserable. Quote Link to comment Share on other sites More sharing options...
lfreem02 Posted August 23, 2012 Author Report Share Posted August 23, 2012 targs66 - My heart rate has been running high since my symptoms started. I have had it drop down to 48 when I tried an SSRI, and it was 64 in the doctor's office this week, but my bp was 140/90. My lightheadedness seems to happen when I am sitting and all of the time while I am walking. It is more like I am looking through a video camera view finder (or living in the Blair Witch Project movie). I do wonder after my reaction to a new medication yesterday if the autonomic issue is causing my body to react the opposite of how it should to medications. So, I have tapered back to Midodrine first thing in the morning only. I am thinking the electrophysiologist is correct that I don't have orthostatic hypotension, but instead my vagus nerve is being triggered for some unknown reason. I sometimes feel what I perceive to be pooling in my abdomen, so maybe there is a link. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted August 23, 2012 Report Share Posted August 23, 2012 Vagus nerve issues are very common in dysautonomia. I have them as well. Look at some schematics of the Autonomic Nervous System, and you will be amazed at all that is involved. Just all the cranial nerves in general....http://en.wikipedia.org/wiki/Cranial_nerve Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.