Pupils constantly dilating and constricting- hard to see in light

[Ivana]

Hi guys

Just wondering whether anyone has experienced the symptom of always having their pupils dilating and constricting- therefore making it impossible to see in the light. Dr De Meirleir has told me that this is due to the neurotoxicity, but i haven't come across any other patient who has this. Does any one know anything about it and can it be reversed? I know the eyes are an extension of the brain so I'm a bit concerned here. Ive seen doctors but theyre all typically dismissive of the symptoms and tell me its nothing.
Any help would be great

Ivana

 

[L'engle]

Apparently it's to do with adrenal glands not working properly, from what I've read. I think a lot of us have light sensitivity, and if you shine a light at your eyes, a healthy person's pupils are supposed to stay constricted, while a person with ME will often have them begin to fluctuate.

 

[Ivana]

Yeah i read about that.. but mine fluctuate all the time, even if ive got sunglasses or tinted contacts on, when i get family members to look closely- they still see them fluctuating. Also, when theres a lot of light (and the pupil should be small), mine are huge.. Im a bit worried coz this happens all day every day, and i have to wear sunnies indoors, even when something as small as a lamp is on.

 

[Enid]

Yes I went through a period of the same problem Ivana - since disappeared and know not why except concentrating on the recognised ME protocols. I think KDM's explanation of this unpleasant symptom is probably near the mark though I recall something quite muscular - the inability to readjust focussing, loss of depth vision as well as sensitivity to light.

 

[Gavman]

I'd be more inclined to believe its the nervous system; when someone goes into shock their pupils dilate. There is a move with bowen technique that is for shock, which is the respiratory system and this brings the pupils back down, also there is a move that releases the kidney area, which can have the same effect. Breathing deeper and not having kidney hormones going at an erratic pace will help calm the nervous system.

 

[Foggy]

My eyes are erratic too, esp in the dark which then causes severe dizziness. I presume its the ME.

 

[alex3619]

I had this symptom extremely badly for about a decade. Then it went away. Sometimes it comes back in a milder form. Get a really good pair of wraparound sunglasses. Bye, Alex

 

[Ivana]

Alex, do you know of anything that can help to get rid of it or ease it? Does it interfere/make the M.E worse?

 

[richvank]

Hi, Ivana.

It would be interesting to see how a 24-hour saliva cortisol test on you would come out. I don't know if you can get that in Oz, but probably the saliva is shippable. SabreScience offers their Adrenal Stress test through www.directlabs.com in Louisiana, USA https://www.directlabs.com/OrderTests/tabid/55/language/en-US/Default.aspx They want the samples within 48 hours. I would suspect that your HPA axis is pretty dysfunctional, and that it would show up on the cortisol test. If so, I think that methylation-type treatments can help with that. You are already getting the B12. If some methylfolate were added, you would have the essence of a methylation treatment. I think Thorne products are supplied in Oz, and they sell a 5-MTHF.

Best regards,

Rich

Best regards,

Rich

 

[gu3vara]

I second what Rich said about the HPA axis, I had this pretty bad too at some point and my salivary cortisol was very low all day long. I tried taking HC for a year and somehow the problem resolved, but I think it's a coincidence. My pupils are still fluctuating a bit when I put a light in it but nowhere near what it was. I don't think the low cortisol in CFS is a symptom that is not worth treating with HC, it didn't make me feel any better. The answer is somewhere else, perhaps methylation as said above.

 

[alex3619]

Alex, do you know of anything that can help to get rid of it or ease it? Does it interfere/make the M.E worse?

Hi Ivana, unfortunately as for treating it I would be only guessing. My light sensitivity problem eased before I started using nutritional strategies on my ME, long ago. My best guess is that it will increase neurological problems if you get too much light, and that magnesium may help. Other nutritional strategies might work, but I can't say for sure as I have no experience with that. Bye, Alex

 

[Ivana]

Thanks for all that, guys..

I have had my HPA axis tested and it came back perfect. I also had the saliva test done (via a naturopath) and it showed constant high levels of cortisol (although this was normal on the doctors range (mine was 600 on 620 being the max range). Ive had the HPA test repeated since and cortisol is at a normal level now.. so perhaps its not that..??

I was also thinking that it could be a neurological thing (thats what KDM said) due to everything thats going on inside, but I'm terrified that it will be permanent. I have had to get custom made dark tinted contact lenses but they dont match my dark green/hazel eyes so so it ends up looking like a weird red colour and i look like a vampire :S plus, with all the nervous system problems, i flinch as soon as the contacts are near my eyes, it takes family members 45mins to put them in for me. This, ofcourse, is only on the very rare occasion when I can go somewhere.

I have heard people saying its due to cerebellar/brain damage (coz of the neurotoxins).. anyone heard anything about this?

 

[taniaaust1]

I dont know if my eyes were doing that but they were doing very strange things.. eg pupils shaking side to side, unequal pupils and my pupils responding differently to each other which some ambulance personal noted (they wrote sluggish response and one not constricting properly). At one point I was extremely light sensitive (and had to be kept in a dark room).

My eye issues I know were neurological and they arent doing it nowdays.. but were very bad when I had a lot of other neuro issues happening too eg myclonus etc (jerks/tremors)

 

[Lou]

Hi Ivana,

Not long after I first got ME/cfs this was a problem I had as well. Can recall one day in particular where it was constant, running on three or four second cycle. There was a product back then called Procaine, and I believe MAO inhibitors were contra indicated, apparrently I ate too much cheese or other substance and the eyes went berserk.

Good news is it was completely reversible in my case, and I don't see why it won't be for you either. Maybe check and see if you are taking anything which has relevance to MAO inhibition.

Good luck,

Lou

 

[Athene]

My eyes used to do this a lot. I have managed to get my cortisol level much higher using Wilson's protocol and they are much improved, They still do it when I am very tired - which makes sense, the cortisol level is lower then - but overall, I am seeing better in the sun.

 

[Jenny]

Thanks for all that, guys..

I have had my HPA axis tested and it came back perfect. QUOTE]

Hi Ivana

What is the test for HPA axis function?

 

[adreno]

My guess would be the problem is caused by electrolyte imbalance.

 

[Ivana]

Jenny, the test was done by an endocrinologist.. the HPA test is a routine test which they perform

tania- my eyes do the same thing, theyre different in size, dont respond at the same time.. and i have problems with jerks, tremors, shakiness, etc.. I really hope it goes away!!
Did u find that if, for example, youre sitting down/lying down etc and someone places a hand on ur shoulder or any form of unexpected contact, you'll have a jerk-like reaction??

 

[taniaaust1]

Jenny, the test was done by an endocrinologist.. the HPA test is a routine test which they perform

tania- my eyes do the same thing, theyre different in size, dont respond at the same time.. and i have problems with jerks, tremors, shakiness, etc.. I really hope it goes away!!
Did u find that if, for example, youre sitting down/lying down etc and someone places a hand on ur shoulder or any form of unexpected contact, you'll have a jerk-like reaction??

Yeah.. I had an extreme startle reflex too (still do sometimes). Any kind of stimulation could actually make me start jerking eg wind suddenly hitting my face used to make me get jerking (other times it would happen with no stimuli at all)

I was also found to have hyper-reflexia eg when doctor tested my knee responses.. he almost got kicked in the head (my neuro reflexes were soo over exaggerated), with that whole symptom complex (the eye stuff and all). All that neuro stuff has settled down around the same time as the eye stuff did.

Trying to get enough rest if possible (eg aggressive rest therapy) may help the over stimuation of the nervous system but it will take time to settle.

I'd love to know exactly what is happening in our bodies to give us different symptom complexes at times.

 

[Athene]

I have heard people saying its due to cerebellar/brain damage (coz of the neurotoxins).. anyone heard anything about this?

When I was first diagnosed with Lyme disease the doctor made me get a very thorough set of testing of my eyes. There were signs of neurological damage in the eye (optic nerve) caused by the bacteria, which has improved since I've been on antibiotics. The bacteria directly attack the myelin sheath of the nerves and the neurotoxins they produce also create other erratic effects.

Have you been investigated by a really good eye doctor? The equipment this woman had was amazing, she kept me there about 3 hours. It was exhausting, but reassuring to know she had checked literally everything that your eyes can possibly get wrong.

I do know diabetes can make your eyes do odd stuff, it might be worth reading up on that as I know many of us PWCs get abnormal blood sugar curve wich may cause similar effects.