Nystagmus Treatments anyone?

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Nystagmus Treatments anyone?

Postby Daisy3 » Mon Aug 15, 2011 12:19 am

Hi all,

Do any of you have the jiggling eye movement? If so,have you found anything that brings you relief?
My husband has it and it is getting much worse. His vision is becoming compromised and he falls because he cannot see steps etc.
Any suggestions would be welcome!

Thanks!
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Postby jimmylegs » Mon Aug 15, 2011 7:42 am

both low magnesium and low thiamine (b1) have been known to cause nystagmus.

fyi http://www.ctds.info/nystagmus.html

more re thiamine
http://www.ncbi.nlm.nih.gov/pubmed/16148620
Acute ophthalmoplegia and nystagmus in infants fed a thiamine-deficient formula: an epidemic of Wernicke encephalopathy

http://www.ncbi.nlm.nih.gov/pubmed/9417174
Wernicke Encephalopathy and Beriberi During Total Parenteral Nutrition Attributable to Multivitamin Infusion Shortage
We report a 20-year-old female patient with Crohn's disease who developed [edit: wernicke's encephalopathy] WE as a result of thiamine deficiency. She had Crohn's disease since age 9 years and was on chronic [edit: total parenteral nutrition] TPN. Two months before admission, [edit: multivitamin infusion] MVI was discontinued in the TPN because of the shortage of its supply. An oral multivitamin tablet was substituted instead. She was admitted to the hospital for persistent vomiting. In the hospital, she continued to receive TPN without MVI, but continued taking an oral multivitamin preparation. Two weeks after admission, she developed signs of WE including diplopia, ophthalmoplegia, nystagmus, and memory disturbance. She also developed hypotension that was thought to be caused by beriberi. She was treated with 50 mg of intravenous thiamine. Within hours of the intravenous thiamine, her hypotension resolved. The day after the infusion, she no longer complained of diplopia, and her ophthalmoplegia had improved dramatically.


IIMA, does hubby take high-dose vitamin d3, if so is it balanced with calcium, magnesium and zinc intake? and if so, what are the dosages and timings for intakes of all those?
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby Daisy3 » Tue Aug 16, 2011 4:01 am

Hi JL,

How are you?!
Hubby used to take those pills but does not anymore as he did not really feel they benefitted him. It requires dedication and some guidance from your local health providers,and these guys would not have a clue.

I had heard about botox and gabapentin and baclofen,and wondered if anyone here had tried them. Seems as though nystagmus is pretty rare on this board.
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Postby jimmylegs » Tue Aug 16, 2011 6:00 am

hey there daisy! :D i am great physically and battered and bruised financially :S lol!

so he's on no supplement regimen at all? sorry to hear your local folks are not as helpful as you need. if they didn't work, perhaps the blood levels still were not high enough, or something else is going on. without a cooperative doc and access to bloodwork it's hard to say.

i am a dunce at pharma stuff, sorry :( all i can usually provide is info on which if any nutrients are depleted thru their use, or what nutrient supports the body function they are attempting to synthesize. do you know i saw a study that showed interferon restored vitamin e levels to that seen in healthy controls? some of this stuff is so nuts! :S

anyway hope you guys find a solution. take care!
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby munchkin » Tue Aug 16, 2011 10:01 am

Hi

I have nystagmus and take baclofen, it doesn't seem to make much of a difference. I also take high dose vit D3, magnesium, calcium and zinc after reading some of JL's nutrition threads.

I couldn't say whether the vitamins make a difference but my eye's aren't any worse and it's been about 4 years since I first started having that particular problem. But, I do have really strong nails for the first time in my life and I think that is directly related to the vitamins; how much and the timing, not that your husband will be worried about his nails.
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Postby jimmylegs » Tue Aug 16, 2011 1:14 pm

munchkin you still have nystagmus?

how much mag per day, what form, what timing in relation to d3?

also, do you take b-complex at all? specifically b1.. thiamine figures prominently in the klenner protocol for ms and low levels can cause nystagmus.

isn't it fun, how great nails are as indicators? i can totally see it show up on my nails if i slack too much on the regimen. i have this one particular nail it looks like hell right now, i just figured out i have a new bottle of zinc which i thought was going to be good but first i realized oh it's tablets not powder caplets, that will be a hit to the absorption, and then i realized they were only 15mg not 50mg. i must have been sleepwalking at the shop. i am taking three of these 15mg zinc tabs per day now, and we'll see if that gets the 'indicator nail' back in condition :)
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby Daisy3 » Tue Aug 16, 2011 1:25 pm

jimmylegs wrote:hey there daisy! :D i am great physically and battered and bruised financially :S lol!

so he's on no supplement regimen at all? sorry to hear your local folks are not as helpful as you need. if they didn't work, perhaps the blood levels still were not high enough, or something else is going on. without a cooperative doc and access to bloodwork it's hard to say.

i am a dunce at pharma stuff, sorry :( all i can usually provide is info on which if any nutrients are depleted thru their use, or what nutrient supports the body function they are attempting to synthesize. do you know i saw a study that showed interferon restored vitamin e levels to that seen in healthy controls? some of this stuff is so nuts! :S

anyway hope you guys find a solution. take care!


Battered and bruised financially?!
I can only think your vitamin regime is costing you the earth:-)

I'll have a word and see if we can slip more vitamins in his daily routine.
It's funny the nail think came up as his nails really are terrible...
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Postby jimmylegs » Tue Aug 16, 2011 3:55 pm

nails are so handy!

some fortune tellers know about nails and they can really freak people out using that knowledge.

quite seriously, my vitamin regimen costs my mum the earth.

i just lost my apartment and have to move home at the end of this month.

although i work for venues that are open 365 days per year all days and some evenings, i do not have an employer that thinks i deserve hours or wages that will keep a roof over my head.

people in my role also can't get enough income per month during the high seasons to qualify for benefits or for adequate employment insurance in the low seasons.

if this was australia, it would be illegal to do human resources this way!

there done venting :)
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby munchkin » Tue Aug 16, 2011 7:11 pm

Hi

Nails are wonderful, now I have to figure out how to type with them. I spent my adult life trying to understand why I had such lousy nails. Everyone said I needed gelatin in my diet or just calcium.

Along with various other supplements like fish oil these are the fundamental ones.

morning
300 mg magnesium (citrate & oxide) I couldn't find the one you recommend.
1000 mg vit C

lunch
1000 mg vit c

supper
2 x 300 mg magnesium
500 mg calcium from calcium carbonate in oyster shell with 125 iu D3 (I just realized that this is probably not a good form of calcium)
10000 iu D3 (cholecalciferol) I'm not sure about that spelling
20 mg zinc with 1 mg copper & beta carotene
1 centrum forte
1000 mg vit c

I was taking B12 shots every second week but with holidays etc. I haven't gotten back. I was trying to find a good alternative to the shots. The centrum has 20mcg of b12 and 2.25 mg of b1

It must have been very frustrating for you to have to quit (if I remember correctly) your job and have all of that upheaval going on. It sounds like you have pretty good support system in your life.
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Postby jimmylegs » Tue Aug 16, 2011 8:41 pm

heya :)

glad you have wonderful nails now :)

re b vitamins, the klenner protocol for ms basically recommends (among other things) the equivalent of a b100 complex (ie 100mg of most components) at breakfast, lunch, dinner, and bedtime.

klenner recommends therapeutic megadoses. it's known that more than 100mg vitB6 can be harmful in the long run.

regarding the vit b1 in particular, klenner calls for 300mg at breakfast, lunch, dinner and bedtime, for a total of 1200mg thiamine per day while you're on the regimen.

a lot of people take 1000-2000mcg vit b12 per day (note not to take it in the morning as it can screw up circadian rhythm ie mess with your sleep-wake cycles)

i have not quit my job. this particular monday to friday it will deliver 9hrs of employment, after assurances of full time earlier in the year. i left home due to physical abuse. my abuser has since died, otherwise i would not be accepting the support i currently enjoy, including the opportunity to move back home. such is life.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby munchkin » Wed Aug 17, 2011 5:43 am

Thanks for the B information and the other nutritional information. It has been the most helpful info I've gotten in a long time.

You have had major challenges in your life, I apologize if I have sounded too casual in my comments. Your writings are confident and strong.
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Postby Daisy3 » Wed Aug 17, 2011 7:41 am

jimmylegs wrote:nails are so handy!

some fortune tellers know about nails and they can really freak people out using that knowledge.

quite seriously, my vitamin regimen costs my mum the earth.

i just lost my apartment and have to move home at the end of this month.

although i work for venues that are open 365 days per year all days and some evenings, i do not have an employer that thinks i deserve hours or wages that will keep a roof over my head.

people in my role also can't get enough income per month during the high seasons to qualify for benefits or for adequate employment insurance in the low seasons.

if this was australia, it would be illegal to do human resources this way!

there done venting :)


So sorry to hear about the job and apartment. Employers really do take the biscuit. I am assuming your in the USA? No free health care either for you guys:-/
You are good at the vitamin/holistic type stuff. Is there no way of making a living that way?
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Postby jimmylegs » Wed Aug 17, 2011 1:14 pm

hey munchkin glad to help.
no need to apologize, i just didn't sugar coat my situation :S i'm mad about that, not at you :)

daisy i'm in canada so we have some government health care. it's not really free, you pay a provincial tax on a sliding scale to get certain services.
you have to get private insurance, usually as an employment benefit (not at my job) to cover dental, eyes, and medicines.
they recently canned free vit D3 testing for ms patients (among others) here. good times!
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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