Back in December of 1998 I had a pretty bad reaction to a TD vaccine. I had a variety of neurological symptoms (numbness, tingling and burning in the extremeties, lightheadenessm twitching, flu like symptoms for 6 months, etc.), and it was determined by my drs. that I was having an auto-immune reaction to the vaccine. I posted a detailed question here, and I was told that it sounded like a GBS syndrome and would gradually go away. Which it has. However, the one remaining symptom that lingers is a photophobia only to artificial lighting (both fluorescent and incandescent). It has stomped my neurologists as to why I feel lightheaded and even achy in these types of lighting, but in the bright sunlight, I am fine?? I have had my eyes examined by a neuro-opthamologist as well, and he says that they are perfect. All neuro. tests have been completely normal. All MRIs (both cervical spine and brain), EMGs, EEGs, spinal tap and exams by my doctors have been totally fine as well. I might add that when this symptom started, it was accompanied by the lightheadedness (which is slowly going away), and it began when I was in the midst of a month long panic. I had yet to be diagnosed and drs. were looking for MS, lupus, tumors, etc. Could this odd symptom be left over from the anxiety/depression I felt? I would really appreicate any insight you have to this. Thank you.
Td has been reported to give a GBS. I am not sure why neurontin was used with GBS, but it figures that it didn't help. Neurontin might help the paraesthesias but in GBS most likely it would not help due to the etiology. GBS is an autoimmune disorder. We know that GBS can effect the cranial nerves and maybe this is what is giving you the strange reaction to various types of light. It is difficult for me to tell over the internet. My guess is that this is a residual from your GBS and will over time correct itself.
Doc RPS is on it. You probably do have some cranial nerve damage residual of GBS. I had GBS way back in 1972 and sustained damage to the 7th cranial (facial nerve - left side only) resulting in partial paralysis. My left eye is involved also. I never fully recovered from GBS and to this day, I detest all flourescent lighting save one. The incandescent kind I can tolerate. Meaning I don't get "drunk" because of it, but it does tend to give me headaches.
But this is not to say you won't get better. It merely rests on how involved your case of GBS is/was. A contaminated "flu shot" triggered my case. It was really involved. Paralysis from head to toe, but ever-so-lucky no respirator entered the picture (although it was on stand-by).
I hope your eyes get better, but if they don't, do what I did. Get slightly tinted neutral gray lenses (tinted just enough that people can still see your eyes and you can still see inside). Even if you don't wear glasses, you can still have some made. I suggest graduated tint, meaning dark up top graduating to clear at the bottom. It helps immensely. I've been wearing mine for 27 years now. Hope this info helps and you continue recovering.
You are very welcome. The tinted glasses are the answer for those sensitive eyes. I speak from experience on the issue. Like Paige, sunshine doesn't bother me at all. Just that darn artificial lighting. (I wore Ray Bans paralyzed in the hospital bed.) The feeling Paige describes as light-headed, I have called "drunk" all these years. You are correct in suspecting cranial nerve damage. I'm a living example. So is Paige. Extensive testing always reveals nothing. The reason being... doctors can't see or feel what we are experiencing. It's like: "You should see it from my side!" Believe Paige and me when we say there is something visually wrong. Queer, like GBS itself. The definition for Guillain Barre Syndrome in 1972 was about a paragraph long. Where it came from was not known, but researchers suspected that it came on the heels of a cold... or the flu. Viral, but past that in the sense of what, in sinister privacy, the virus is capable of mutating into. If I am wrong in my assumptions, please tell me. I just want Paige to know that she is not alone in her visual dilemna. Hang in there Paige. Thanks again, Doc.
Thank you for the advice. I have investigated glasses, but for now, they haven't helped much. I did not have GBS-the protein in my spinal tap was normal and my EMG was normal-but I had something very similar-a cousin of the syndrome, i suppose. I suffered from many of the same symptoms as GBS patients have, but thankfully I did not experience paralisys. Anyhow, it has been a terrible experience, and I hope that the dr. is right in predicting my recovery. I admire you for handling this for so many years-it may seem like a mere inconvenience to those who haven't experienced such odd symptoms, but it is more than that. If you want to email me, my email is
Good luck to you and thank you dr. for answering my question.
You are welcome. We have seen variants of what we think has been GBS with only EMG changes and normal CSF. However, we have not seen a normal EMG and CSF with what we thought was GBS. But, that doesn't mean it doesn't exist.
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