Blepharospasm Bulletin Board

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Posted by: Jann ®
04/22/2013, 19:16:14
Just curious how many of you are aware of having low B!2.

As part of my ongoing quest to relieve my debilitating eye spasms, I had very thorough blood work done looking for any nutritional deficiencies. I actually came up with several low counts (including magnesium and other B vitamins), but my B12 was particularly low.

Like most of us, I am aware of the publication in India about the man who was cured of bleph after receiving B12 shots for a deficiency. The doctor gave me a B12 shot today and totally revamped my vitamin regimen. Of course, I am praying this does something to make me feel better.

I can recall seeing posts from some of you who noted your B12 was low, so if you wouldn't mind, I'd be interested in knowing how many of you do show some sort of deficiency.

Thanks much, Jann




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Re: Survey Question
Re: Survey Question -- Jann Top of thread Archive
Posted by: MTRose ®
04/22/2013, 19:20:33
I'm glad you posted this I was taking a magnesium supplement because the neurologist thought I had migraines but instead they found out I had bleph. Anyway I stopped taking the magnesium about 2 weeks ago, thinking well I don't need that since I don't have migraines, and I have been worse again. I bet I have a magnesium deficiency also. Thank you so much for helping me realize this.



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Re: Survey Question
Re: Re: Survey Question -- MTRose Top of thread Archive
Posted by: In Indiana ®
04/23/2013, 07:17:52
Hi, MT-

It may be helpful for you to look into a riboflavin deficiency as well. Riboflavin supplementation has been shown to improve migraine symptoms. Interestingly, since riboflavin deficiencies can cause photophobia and burning/stinging sensations in the eyes, it makes me wonder if this is the connection between migraines and blepharospasm.

http://www.webmd.com/vitamins-supplements/ingredientmono-957-RIBOFLAVIN%20(VITAMIN%20B2).aspx?activeIngredientId=957&activeIngredientName=RIBOFLAVIN%20(VITAMIN%20B2)

http://www.ncbi.nlm.nih.gov/pubmed/15257686

One other thing to consider - butterbur root extract (Petadolex is the brand name). This is recommended to prevent migraines by the American Academy of Neurology.




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Re: Survey Question
Re: Survey Question -- Jann Top of thread Archive
Posted by: In Indiana ®
04/23/2013, 07:13:02
Hi, Jann-

My vitamin B12 levels run low, and I get injections twice monthly. My sons levels are low also - he gets monthly B12 injections. My father also was B12 deficient - it can run in families.

Unfortunately, when people have trouble absorbing B12, it most likely means that they are low on all B vitamins, since they are absorbed in a similar way.

Low riboflavin, otherwise known as B2, can result in photophobia as well as burning/itching of the eyes (source - Pathophysiology-The Biologic Basis for Disease in Adults and Children 6th edition, McCance an dHuether, page 70).

Magnesium plays such a large role in proper muscle function. It makes sense to me that low levels of this could also affect the eye muscles.

Keep in mind that it can take weeks or even months to get your levels up to optimal, especially if you have difficulties with absorption.

You aren't by chance taking a PPI? It has been shown that these can block the absorption of vitamins, especially magnesium!

http://www.medscape.com/viewarticle/738230

I'm so thankful that you found a provider that actually pays attention to your vitamin levels. Not all do.

I'd be curious to know how you feel after a B12 injection. Thanks!!!



Modified by In Indiana at Tue, Apr 23, 2013, 10:39:27

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Re: Survey Question
Re: Re: Survey Question -- In Indiana Top of thread Archive
Posted by: Jann ®
04/23/2013, 09:37:08
Thank you for your responses!

In Indiana - Yes, all of my B vitamins were low with the B12 actually deficient. Despite taking supplements, I was low in so many vitamins, amino acids, etc. I absolutely need to address this and see if my new regimen has any impact on the bleph. I know it can take awhile, but I would give anything to find even a little relief from the eye spasms.

I remember you asking me how long I've had this and noting that over the years, the bleph gets somewhat better. Maybe that's happened for you because of the B12 shots??

By the way, thank you so much for the tip to try Bio Tears. I have been using it for about a month now and there is a noticeable improvement in my eyes. They are so much less dry and irritated. It's a great product - I'm so glad you mentioned it!

Jann





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Re: Survey Question
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Posted by: In Indiana ®
04/23/2013, 10:41:24
I'm so glad that the Biotears are helping! I only take 2 a day now instead of the recommended 4, but they still really help me. I never need to use moisturizing eye drops anymore.



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Re: Survey Question
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Posted by: Jann ®
04/23/2013, 14:13:30
I'm taking the 4 per day and don't use anything else either. It's good to know you've cut back to 2 and still get the benefits. I had always had unbelievable discomfort in my eyes when I got up in the morning and I'm fine now, which is amazing. It's such a great product!

This is a perfect example of a natural product that actually helps. Every eye doctor i went to just told me to keep pouring eyedrops into my eyes or plug my tear ducts. None of it helped me at all. So this is pretty awesome. Thank you again!!!

Jann




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Re: Survey Question
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Posted by: In Indiana ®
04/24/2013, 05:36:27
I'm just thrilled it helped. I think this is a good example of getting to the source of the problem (nutrient or Omega 3 deficiency), instead of repeatedly putting bandaids on it (i.e. eyedrops).



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Re: Survey Question
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Posted by: lisao ®
04/24/2013, 08:34:17
I assume the docs will catch on eventually.

My sister has had problems with chronic hives, and yesterday I saw an article on Medscape about a new study showing that a drug currently prescribed for asthma turns out to be extremely effective for hives - works much faster than the current hives options, with fewer side effects. I sent my sister the article, who told me her "hives" bulletin board (similar to our BEB board) has been discussing this drug for ages - many have tried the drug themselves and found it helped. (I guess they had had it prescribed for asthma.)

It makes sense that the people with the most to gain from trying new therapies will be the first to recognize their effectiveness! But we should all tell our eye doctors and neurologists about this one, so more people can benefit!!






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Re: Survey Question
Re: Re: Survey Question -- In Indiana Top of thread Archive
Posted by: Susi ®
04/23/2013, 15:56:29
I probably should know, but what is a PPI?
I don't know what my B levels are but will ask my GP. to check them. She's my new doc and seems willing to work with me when I ask questions, etc.

I tried to get that medscape article but it wants me to join. Do I have to join to access the article? Is it worth joining and will they send me a bunch of junk mail if I do?
Thanks for getting this thread going.

I just started taking Bio Tears. I hope to see some improvement. I bought some TranquilEyes goggles and so far have not felt that they do much but will keep trying. I think the heated bean bag is more effective. I need the heat and the TEs do not stay warm or get hot enough to help the oil glands.

Have tried Nature's Tears Eye Mist. Could probably make my own with a spray bottle and salt water...Not worth the price, but the spray, though sloppy, is a bit soothing for a short while when I am on the computer.

I bought Tears Again eyelid spray but have not tried it yet. I want to give the Bio Tears supplements some time so I know what works and what doesn't.

I also want to remind people that supplements need to be used with caution. They can be dangerous if used incorrectly and without a doctor's supervision.
Susi




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Re: Survey Question
Re: Re: Survey Question -- Susi Top of thread Archive
Posted by: lisao ®
04/23/2013, 19:52:55
I am guessing "proton pump inhibitor."

A PPI like "protonix" (prescription) or pepsid (over the counter) suppresses stomach acid, which helps with reflux and stomach aches. But suppressing stomach acid also affects the digestive process, making it harder to absorb vitamins and nutrients in foods. Short term, no big deal. Long term, it could cause deficiencies.




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Re: Survey Question
Re: Re: Survey Question -- Susi Top of thread Archive
Posted by: In Indiana ®
04/24/2013, 06:10:09
Hi, Susi-

Very good point about making certain to use supplements (and medications) with caution and to keep your health care provider/pharmacist "in the loop".

I do feel that the best type of patient is a well-informed patient. One that doesn't rely solely on what the physician says, but is active in the process of being as healthy as possible. We must know our own bodies, and what we are putting into them, and what the risks are. We are in charge of optimizing our own health - no one else can do that for us.

A PPI is a proton-pump inhibitor (brand names include Prilosec, Nexium, Prevacid). These are used quite frequently, and over the past few years, have been linked to B12 and magnesium deficiencies. New recommendations are that these drugs should only be used short-term, but in the past, people used them for much longer. Plus, some can be purchased over the counter. Other medications that can cause a B12 deficiency are metformin (Glucaphage) and histamine 2 blockers (brand names include Zantac, Prevacid, Tagamet).

Medscape is a good, up-to-date health care resource. I do get their emails, but I feel that they contain valuable info. You could probably block them or request not to get them.

http://www.medscape.com/viewarticle/773655_2

http://www.aafp.org/afp/2011/0615/p1425.html (this link is from the American Academy of Family Physicians, and has a table that shows all of the risk factors for vitamin B12 deficiencies, including, unfortunately, age!)




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Re: Survey Question
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Posted by: lisao ®
04/24/2013, 08:53:42
I agree wholeheartedly about a patient needing to be well-informed.

I was twice prescribed "protonix" - a PPI mmuch stronger than pepsid, etc., for reflux. The first time was by a GP who put me on it for 10 days. It cleared up the problem, and I was fine for years. The second time, I consulted a gastroenterologist, who put me on it and left me on it for 2 years!

I kept asking him if I should try to get off it, and he assured me there was no downside. I specifically asked him about vitamin absorption because I had read in "health" magazines that PPIs could interfere. My doctor said not to worry about it. I don't even blame him; no doubt he was just adhering to current guidelines in gastroenterology at the time. But I decided to get off the meds anyway.

When I first stopped, there was a backlash as my system adjusted to the increase in acid - but it only lasted a few days. I imagine that backlash is part of the reason docs kept people on the meds. (Weaning slowly helps.) Now, apparently, the absorption problems are widely acknowledged, not just by fringe ("health") mags but in the mainstream, and I am happy to learn from Indie that the recommendations have been changed. But if I had not taken matters into my own hands back in the day, I might have been on those meds for a decade.




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Re: Survey Question
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Posted by: In Indiana ®
04/24/2013, 18:55:34
Lisa-

I'm so thankful that you were able to get off of that medication! I've heard how difficult it can be. Thank you for sharing your story.

You would probably enjoy the CNN special "Escape Fire". It is an excellent presentation of how our healthcare system is broken, with people thinking that medicine is the answer. Instead, many chronic problems are better addressed or prevented with evidence-based nutrition, stress relief, exercise, and lifestyle modifications. Unfortunately, many health care providers are not paid in general for their successes; they are paid for how many procedures they do/patients they see. As our healthcare system switches to outcomes-based compensation, hopefully there will be more incentives to find answers to prevent/cure blepharospasm.

One of my favorite new health promotion campaigns that I've seen on the internet is for Alzheimer's prevention. Multiple studies have found the benefits of exercise and the brain. Their motto is "Are you scared of getting Alzheimer's? RUN!!!" (they mean exercise). I think of people with blepharospasm, and how exercise may be extremely beneficial. I completely understand that it's easier said than done, but it may be so important that we must find ways to do it.




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Re: Survey Question
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Posted by: Jann ®
04/24/2013, 19:45:12
Susi - Hang in there with Bio Tears. I started to notice a difference after taking four per day for about a week and a half. I've seen continued improvement ever since. It hasn't helped my eye spasms, but it has helped the dryness and irritation immensely. It was a wonderful tip from In Indiana. I really hope it provides relief for you too!
Jann



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Re: Survey Question
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Posted by: diane48 ®
04/25/2013, 12:24:35
A few years ago, after reading about B12 shots being especially beneficial for seniors, I asked my primary if I could have a prescription for the B12 & also injection needles.

To my surprise, she consented, & I gave myself B12 shots weekly for many months.

I was not cured of bleph like the man in India.

There was no effect on my bleph at all.

I recall several decades back, it was popular for people to get the B12 shots from a doctor, to enhance their mood & well-being. I wasn't one of those people.

I take B12 (& other vitamins & minerals) orally now, just for maintenance.

And I do wish success to anyone giving the shots a try!

As for India, I read recently that there's a hospital there that claims that the med they dispense *cures* leukemia.

(It got my attention bc my older brother was just diagnosed with acute myeloid leukemia.)



Modified by diane48 at Thu, Apr 25, 2013, 12:34:32

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