Bulging eye discs.. does anyone else here have this too?

[taniaaust1]

A special eye scan at the hospital I had done for a ME research study, picked up that I have an abnormality bulging eye discs. Ive now been refered to an eye doctor who specialises in unusual eye issues due to this to try to work out why mine in both eyes are bulging. (wondering if that puts me at risk of loosing my eye sight?)

I dont think there has been any advanced eye scan studies done in ME/CFS, so wondering if there is anyone else here in which has had such a scan done and if so was any abnormality found? (Im the third person in the ME study so only 2 before me have been scanned in this way, their eyes were normal on scan). Another complication of my severe ME??

I looked up where the eye disk is and it seems to be located right at the back of the eye where the optic nerve enters the eye.

 

[Asklipia]

@taniaaust1 I am sorry about your eyes.
I have had a lot of problems with mine, and eventually this comes down to irritation behind the eyes (for a variety of reasons).
I had spectacular reduction of this doing Bains Dérivatifs, but if I stop the procedure, the inflammation starts again, meaning that the procedure works on the inflammation but not on the causes.

I am having very good results with curcuminoids. I had tried a couple of years ago the LEF Super Bio-Curcumin but had no results.
Two months ago I decided to try another way, by adding a lot of curcuma in food, processed at home from fresh roots.
I have had real results and have good hope.
One formulation that has been studied for eyes is the Meriva-500, an Italian product sold at chemists in Italy as Norflo.
This Meriva-500 is also sold
- by Thorne as Meriva-500TM (Not Meriva SR which seems to be less effective according to some bloggers)
- by Doctor's Best as Curcumins Phytosome
- by Swanson Ultra as Turmeric Phytosomes with Meriva
- by Source Naturals as Meriva Turmeric

http://www.indena.com/index.php/new-clinical-data-on-merivar-show-eye-inflammations-reduction-.html
Since Norflo is more expensive to buy than Meriva-500, it could be that they have managed better absorption, but I am not sure. It would be nice if someone could find out.

I now realize I had made a mistake leaving aside the curcumin idea. I had done some research and came across various studies indicating it might be a good idea. I took the LEF product and it did not agree with me, I thought curcumin could do nothing for me.
I now realize that there is a variety of curcuma longa species. Most probably people marketing curcumin supplements use different varieties, extracted in different ways, enhanced in different ways too.
At least the Norflo has been specifically studied for the eyes.

Lots of good wishes for your eyes!! Mine had started bulging too but now they are back to their normal shape!

Asklipia

 

[taniaaust1]

thanks. That is good to hear. I just found out by researching what that disc bulging is called "papilledema" caused by intracranial pressure going on and it kind of freaked me out a bit reading the stuff about it on Wikipedia http://en.wikipedia.org/wiki/Papilledema . Scary to read that it can cause one to permanently loose all ones sight and that its a dangerous condition cause of what it represents going on.

Interesting both lyme disease (lyme meningitis) and severe hypertension can cause it (so maybe its from my bad orthostatic hypertension?). Interesting thou that lyme disease YET AGAIN comes up for me, its always coming up with my weirder symptoms (I had bells palsy, morgellon's too which is in lyme and so many other weirder symptoms which are lymie things).

Reading that brain tumor can cause it, just before it develops and hence they do a biopsy looking to see if one is getting a brain tumor.. kind of scary. I remember when some of the world ME experts gave a talk in Adelaide one time, one of them said he's found brain tumors a complication of ME. That is one of my two biggest fears, ME giving me cancer (my other is of it giving me heart failure due to the orthostatic hypertension its given me).
.............

Thanks. I actually are big on making curries and make lots of curry which has a lot of tumeric (I usually put 1Tblespoon of it in..so that is 2 Tblespon I have per week), it hasnt stopped this at all (I wonder if this mean my issue would be even worst if I wasnt having that much curry per week?)

One of the main treatments seem to be diuretics, I wont be able to do that as I have not just have the hyper kind f POTS but I also have POTS with low blood volume so diuretics are contraindicated and would make my bad POTS worst. Treating this eye issue thing could well be going to be very tricky for my new specialists.

Im so glad to hear that yours in better, I hope mine comes good too thou right now I feel rather negative about it as my ME complications too often lead to even more ME complications on a gathering severity scale (said while currently coughing with asthma and watching my shoulder which Ive just noticed has decided to break out in red spots)

 

[Asklipia]

Cumin is definitely NOT curcumin.
Because of my adventure with the LEF product, I have been wary.
The turmeric I use in my food is REAL fresh turmeric.
One can wonder where all the curcumin sold is found? I suspect when we buy turmeric powder, it has been robbed of curcumin, a bit like buying grated coconut gives you just dust of coconut, most of the oil being sold elsewhere separately.
Curcuminoids are very sensitive to light. I buy fresh turmeric and have developed a process to dry it myself without light. Fresh, it does not keep for very long and it is not easy to find in shops where I am.

I now take more like 3 or 4 Tablespoons PER DAY.
Sorry that you feel negative. Let's hope this does not last!

Asklipia

 

[taniaaust1]

Cumin is definitely NOT curcumin.
Because of my adventure with the LEF product, I have been wary.
The turmeric I use in my food is REAL fresh turmeric.
One can wonder where all the curcumin sold is found? I suspect when we buy turmeric powder, it has been robbed of curcumin, a bit like buying grated coconut gives you just dust of coconut, most of the oil being sold elsewhere separately.
Curcuminoids are very sensitive to light. I buy fresh turmeric and have developed a process to dry it myself without light. Fresh, it does not keep for very long and it is not easy to find in shops where I am.

I now take more like 3 or 4 Tablespoons PER DAY.
Sorry that you feel negative. Let's hope this does not last!

Asklipia

Thanks, I was editing my post as I just saw from your link that cumin wasnt curcumin and that curcumin is in Turmeric, when you were doing this post.

Wow 3-4 Tablesppons per day.. how does your tummy/bowel handle that! My normally IBS-C at times goes the other way with my curries which are nowhere near that.

I havent seen any fresh turmeric where I live (it may not be grown at all in my state), its just powder. Sounds like that supplement you provided the link too, may end up being one I need to add to my already too many supplements I need that's if my disc bulging is caused by inflammation rather then one of the other causes of it.

 

[Asklipia]

Wow 3-4 Tablesppons per day.. how does your tummy/bowel handle that! My normally IBS-C at times goes the other way with my curries which are nowhere near that.

I started small. I had all kinds of "detox". Whenever I could handle more, I added more.

You can find (maybe order?) fresh turmeric at Chinese/Thai grocers. I order 2 or 3 kgs and process them all at once, leaving 0,5 kg in the freezer (I only have a very small freezer, otherwise I would put all of it there).

that's if my disc bulging is caused by inflammation rather then one of the other causes of it.

Yes well, we don't know the causes of the other conditions supposed to cause papilledema, do we?
It could be that turmeric would act on these causes?

Rather than undergo any tumor research, I decided to have a go at something less invasive. I do not put that much trust in the medical system as it is. And anyway, I am ready to die rather than live a miserable medicalized life. Up to now, this has worked for me. Except for the eye problem. And I think there is a solution in sight .

Lots of good wishes. May the breath of God blow on your eyes and cool them.
Love
Asklipia

Recipe for POWA, a Marathi turmeric breakfast :
#1 - prepare a cup of water in which you have dissolved some salt and 1 or 2 tablespoon of turmeric powder - This is huge, in India one would use teaspoons rather than tablespoons, but since I cannot afford Norflo I have tried to take turmeric in any way I can.
#2 - prepare half an apple cut in small pieces (pear is OK) + juice of half a lemon.
#3 - prepare 1/2 cup of grated coconut
#4 - put a cup of flattened rice (POWA) which you have put in a colander and rinsed. It is now all soggy and wet. Done at the last minute this.

In a frying pan, melt a good chunk of ghee or butter, half an onion minced, a few curry leaves, a couple of fresh chillies (dry if no fresh, or none at all if you don't like).
When the onion is transparent, add #4, then #1
Sauté everything together.
When ready, take out of the fire, then add #2 and mix.
Serve in a bowl, to which you add #3.

Here some POWA (keeps forever) = http://www.amazon.co.uk/Natco-Powa-...y&ie=UTF8&qid=1383913859&sr=1-1&keywords=powa

 

[taniaaust1]

You can find (maybe order?) fresh turmeric at Chinese/Thai grocers. I order 2 or 3 kgs and process them all at once, leaving 0,5 kg in the freezer (I only have a very small freezer, otherwise I would put all of it there).

Unfortunately no chinese or thai grocers here. Maybe thou I could order it from somewhere else thou (thou it may not then be as fresh).

Yes well, we don't know the causes of the other conditions supposed to cause papilledema, do we?
It could be that turmeric would act on these causes?

true. I just started researching to see what else tumeric possibly may help. A balanced article on it seems to be at http://www.wisegeek.com/what-are-the-most-common-turmeric-side-effects.htm . Its said to possibly help diabetics (which Im getting), high blood pressure (which may be the cause of the eye issue) and also Alzeihmers (something I have a 40% risk of getting)..

Rather than undergo any tumor research, I decided to have a go at something less invasive. I do not put that much trust in the medical system as it is. And anyway, I am ready to die rather than live a miserable medicalized life. Up to now, this has worked for me. Except for the eye problem. And I think there is a solution in sight .

Im confused by your comment. Are you saying you didnt get a brain tumor ruled out for being the cause of your eye disk swelling? Dont trust medicine enough to get that ruled out?

Lots of good wishes. May the breath of God blow on your eyes and cool them.

Thanks. Im not thou getting any burning with my eyes or anything one can see by looking in the mirror at my eyes, in fact I had no knowledge at all I had a bulging disk eye abormality until it was seen in that scan. (its at the very back of the eye so cant be seen except by scan etc. From what Ive been reading about it it says one may get no symptoms at all and can just end up blind due to damage the swelling does).

How long were you having tumeric for before your test results for your eye disc bulging came back as being normal?

Ive been researching high blood pressure causing disc bulging (high BP which I have and my dystolic in the range often at times too which on my research seems to be able to cause eye disc bulging). So I think its the most likey reason of mine.. shockeningly a good medical site info said that ideopathic hypertension (which I wouldnt be surprised mine will be said it is thou its orthostatic), those who have disk bulging with this hypertension, carries a 50% risk of becoming totally permanently blind .

To top it off I have ALL the risk facts of which were listed for idiopathic hypertension and that.. being female (2 third are female), my age.. the medical info said it usually affects when one is in 30s or 40s (Im 42 or 43years) .. and it said it also sometimes happens with coexiting adrenal insufficiancy (which I have!!). I could of been reading about myself with what the medical site said on it as it fit me exactly. So that is very scary if Im right.. (I already think my BP is going to be extremely hard to treat due to its very extreme high/low swinging thing, thou clondine did help it some)

Recipe for POWA, a Marathi turmeric breakfast :
#1 - prepare a cup of water in which you have dissolved some salt and 1 or 2 tablespoon of turmeric powder - This is huge, in India one would use teaspoons rather than tablespoons, but since I cannot afford Norflo I have tried to take turmeric in any way I can.
#2 - prepare half an apple cut in small pieces (pear is OK) + juice of half a lemon.
#3 - prepare 1/2 cup of grated coconut
#4 - put a cup of flattened rice (POWA) which you have put in a colander and rinsed. It is now all soggy and wet. Done at the last minute this.

In a frying pan, melt a good chunk of ghee or butter, half an onion minced, a few curry leaves, a couple of fresh chillies (dry if no fresh, or none at all if you don't like).
When the onion is transparent, add #4, then #1
Sauté everything together.
When ready, take out of the fire, then add #2 and mix.
Serve in a bowl, to which you add #3.

Here some POWA (keeps forever) = http://www.amazon.co.uk/Natco-Powa-...y&ie=UTF8&qid=1383913859&sr=1-1&keywords=powa

[/quote]

I would of loved to have been able to try that but my specialist has me on a special diet as my body doesnt handle carbs and my insulin is crazily high. Lots of those ingrediants are too high for me to eat at all (I cant eat coconut or rice and are limited to just one small piece of fruit per day. Wish I could of tried it.

 

[Asklipia]

Im confused by your comment. Are you saying you didnt get a brain tumor ruled out for being the cause of your eye disk swelling? Dont trust medicine enough to get that ruled out?

I did not get the brain tumor ruled out.
I am not ready to undergo either the testing (which in itself might be harmful and whose results could very well be misleading), nor the treatment (I have seen two friends under such treatment, now deceased after much useless suffering : not for me).
I am older than you (62) and I have had a fantastic life.

How long were you having tumeric for before your test results for your eye disc bulging came back as being normal?

I never had this eye disk bulging diagnosed, even after having seen doctors about my eyes. All they wanted to do was to sell a cataracts operation. But I could SEE that my eyes were inflamed for many years, getting worse and worse, and were starting to bulge as well in a noticeable way. I was sure that this was one of the symptoms of ME/CFS as it came along with the rest.
It is the only such symptom I have left now. I hope it will go the way the other symptoms have gone.

For the moment, I have been on turmeric as much as I can handle for just 8 weeks (started on 8th September). My eye situation was the last thing wrong with me left after much healing. With the turmeric my eyes have at first felt better and worse on alternate days. This week they are feeling cooler and cooler every day. Also they now are not bulging out at all. And I am starting to see better by glimpses.

I wish you a full recovery of all that is ailing you. If you try the Meriva 500, please keep me informed of your results.

Asklipia

 

[Bob]

I expect you've been tested for thyroid, but one of the symptoms for over-active thyroid is bulging eyes. So get tested for thyroid if you haven't already.

 

[taniaaust1]

I expect you've been tested for thyroid, but one of the symptoms for over-active thyroid is bulging eyes. So get tested for thyroid if you haven't already.

Yes Bob I have had thyriod testing.. my specialist is more worried that it could go low (I have 3 family members with hypothyriodism).

Its not actually my eyes which bulge but my eye discs themselves, so I dont know if hyperthyriodism has this issue. The eye disc being at back of eye, the issue is only seen with a scan.

the various causes of eye "disc" bulging listed at wikipedia are
"
Causes

• Raised intracranial pressure: brain tumor, pseudotumor cerebri or cerebral venous sinus thrombosis, Intracerebral hemorrhage
• Respiratory failure[1]
• Hypotonia
• Isotretinoin, which is a powerful derivative of Vitamin A, rarely causes papilledema.
• Hypervitaminosis A, in some people who take megadoses of nutritional supplements and vitamins.
• Hyperammonemia, elevated level of ammonia in blood (including cerebral edema/intracranial pressure)
• Guillain-Barré syndrome due to elevated protein levels
• Foster Kennedy syndrome (FKS)
• Chiari Malformation
• Tumors of the frontal lobe
• Acute Mountain Sickness and High Altitude Cerebral Oedema
• Lyme disease (Lyme meningitis specifically, when the bacterial infection is in the central nervous system, causing increased intracranial pressure).
• Malignant Hypertension
• Medulloblastoma
• Orbital A.Ocular venous drainage block:central retinal venous block, cavernous sinus thrombosis B.Local lesion:optic neuritis, ischemia of the nerve head, toxin (methanol), infiltration of the disc by glioma,sarcoidosis and lymphoma
• Acute Lymphocytic Leukemia (caused by infiltration of the retinal vessels by immature leukocytes)
• Long periods of weightlessness (microgravity) for males[2]
  See Visual Impairment and Intracranial Pressure for further discussion on the topic of papilledema associated with spaceflight.

.........

I guess the Chiari Malformation cause could be a possibility too seeing I have the type of orthostatic issues which can go with Chiari (and of cause that can be a coexiting issue of ME/CFS too ), two of my family members have issues with swollowing in which no cause could be found, which could be symptom of Chiari in my family.

 

[Asklipia]

@Bob
Thank you for your concern. Thyroid is perfect (whatever that means...).