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Characterising eye movement dysfunction in ME/CFS
- Thread starter Firestormm
- Start date
i went to a new (to me) vestibular doctor in Worcester, MA, today. Dr. Gacek. he was lovely. 85 yrs old (!!!), very smart and active.
his theory is that a herpes virus causes vestibular problems. he can't seem to get other doctors in the vestibular community to listen to him, but the patients who come to him with vestibular issues have their vestibular issues resolve once he gets them on antivirals (mostly acyclovir or valtrex). so that is pretty obvious, isn't it?
but he only told me to stay on the antivirals i'm already on, for life, saying that a herpes virus (could be Epstein Barr Virus, or Herpes Zoster or Herpes Simplex Virus) is in my vestibular ganglion (nerve cluster), and that that is causing my vision issues. he says the antivirals will help keep at bay the exacerbations of the vestibular problem. (exacerbations = having to hold on to walls to get to the bathroom, etc. exacerbations can last hours or weeks or months.)
but he also said it is unknown if my baseline jumpy vision, which I've had since 2008, will get better, due to "unstable lesions" in my brain, caused by -- you guessed it -- the herpes virus in my brain.
this virus is (these viruses are) also, obviously, causing much of (all of?) my ME/CFS, too. so at least the antivirals should help both my vision and my ME/CFS.
but the trouble is that they do not stay working for long for my ME/CFS. they start like a miracle cure, and then i lose all gains and get sicker again. case in point: been bedridden a lot these last few months, all while on famvir (an antiviral) 500 mg BID or TID (2-3x/day, the right dose).
also, some of the antivirals can make my stomach burn and give me heartburn.
his theory is that a herpes virus causes vestibular problems. he can't seem to get other doctors in the vestibular community to listen to him, but the patients who come to him with vestibular issues have their vestibular issues resolve once he gets them on antivirals (mostly acyclovir or valtrex). so that is pretty obvious, isn't it?
but he only told me to stay on the antivirals i'm already on, for life, saying that a herpes virus (could be Epstein Barr Virus, or Herpes Zoster or Herpes Simplex Virus) is in my vestibular ganglion (nerve cluster), and that that is causing my vision issues. he says the antivirals will help keep at bay the exacerbations of the vestibular problem. (exacerbations = having to hold on to walls to get to the bathroom, etc. exacerbations can last hours or weeks or months.)
but he also said it is unknown if my baseline jumpy vision, which I've had since 2008, will get better, due to "unstable lesions" in my brain, caused by -- you guessed it -- the herpes virus in my brain.
this virus is (these viruses are) also, obviously, causing much of (all of?) my ME/CFS, too. so at least the antivirals should help both my vision and my ME/CFS.
but the trouble is that they do not stay working for long for my ME/CFS. they start like a miracle cure, and then i lose all gains and get sicker again. case in point: been bedridden a lot these last few months, all while on famvir (an antiviral) 500 mg BID or TID (2-3x/day, the right dose).
also, some of the antivirals can make my stomach burn and give me heartburn.
MeSci
ME/CFS since 1995; activity level 6?
- Messages
- 8,231
- Location
- Cornwall, UK
'Vestibular' is an adjective and means relating to a/the vestibule. Details of vestibules can be found here.
MeSci
ME/CFS since 1995; activity level 6?
- Messages
- 8,231
- Location
- Cornwall, UK
Replying to myself here. Your problems sound as though they are vestibulo-ocular in origin/nature. More stuff about it here.
@MeSci, in my experience and in my reading up on it, it seems to me that most vestibular issues are ocular related, too. it is all packed in there in the vestibular nerves, the vestibular nerves seem to connect to the ear, eye, brain. so when one has a vestibular problem, it often effects all those areas. the result can be dizziness, balance issues, jumpy vision, trouble tracking movements, trouble looking at a still object, hearing issues (e.g. tinnitus, hyperacusis), trouble thinking, foggy brain. etc.
this is a patient organization re: vestibular issues, and their website is great
http://vestibular.org/understanding-vestibular-disorder/symptoms
What are the symptoms of a vestibular disorder?
The vestibular system includes the parts of the inner ear and brain that help control balance and eye movements. If the system is damaged by disease, aging, or injury, vestibular disorders can result, and are often associated with one or more of these symptoms, among others:
http://vestibular.org/understanding-vestibular-disorder/symptoms
What are the symptoms of a vestibular disorder?
The vestibular system includes the parts of the inner ear and brain that help control balance and eye movements. If the system is damaged by disease, aging, or injury, vestibular disorders can result, and are often associated with one or more of these symptoms, among others:
MeSci
ME/CFS since 1995; activity level 6?
- Messages
- 8,231
- Location
- Cornwall, UK
I don't dispute that vestibular problems may have knock-on ocular effects, but they will presumably only be relevant if one also has the other, more-obviously vestibular symptoms.
I have a range of ocular problems, some of which may be ear-related, and others which have no apparent connection to ears, such as temporary change of focus, eye muscle fatigue, twitching (possibly due to electrolyte deficiency), etc.