Scalene muscles and Meniere's - part of my problem

MedievalWriter, have you ever considered eliminating gluten?

Celiac disease/gluten intolerance is very strongly linked with autoimmune thyroid disorders, as well as migraines and dizziness.

It's a vicious circle kind of thing. With the celiac comes intestinal permeability---which means that nutrients are going right through instead of being properly absorbed. Probably the most common resulting vitamin deficiency is B12--and the symptoms of B12 deficiency are (drum roll, please):
dizziness
headache
tinnitus
hearing loss.

Many people also find dairy to be a problem--but that's a whole 'nother issue. One thing at a time! Anyway, if you look in the database section on this forum, I made a post a while back called "Info for Newbies." I should have called it something else--I don't think anyone looks at it. But it has a lot of very interesting info about CAUSES of Meniere's symptoms.

When you know your particular cause, you know your particular cure. Or at least, how to keep the symptoms from ever rearing their ugly heads again.

Doctors don't deal with this kind of thing. They do surgical "fixes" and medication (to mask the symptoms).

Oh, and some laptops let you adjust the brightness of the screen. But sunglasses work, too.

 

Yes, thanks for asking! I did completely remove gluten from my diet for approximately 4 months some years back. Didn't seem to have much effect. What I have found that does help is consuming wheat, oats, and barley that are phytate-processed. Sally Fallon's Nourishing Traditions has the most amazing explanation of phytates in grains that I've ever seen. She describes it so well that I won't even try to reproduce it here any further except to overview it: phytates change into a different chemical when grains are exposed to water (or yogurt, whey, or buttermilk) for a certain period of time. It renders the phytates not only more easily digested but more nutritious. I have noticed a substantial difference in my skin and my digestion when I eat crackers that are made from dough allowed to set overnight, for example. My homemade sourdough bread is very good for me. I let oatmeal soak overnight in water with a spoonful of buttermilk, cook it the next day, and AMAZING how well my stomach handles it (and you'll never taste more rich, buttery oatmeal any other way either!). I was never able to get good results from simply removing gluten from my diet but using Sally Fallon's procedure for grains has been very good for me.

Edit: I guess what I mean is that for my own health I apparently should have gluten but I don't handle it well unless it's phytate processed.

Well, some do. I'm friends with a couple of people who've been positively diagnosed with celiac sprue by intestinal biopsy. They're getting good results from removing gluten from their diets and taking high dosages of steroids. People with other gluten problems (which can have quite as significant an impact on their health as celiac sprue), such as both of my daughters, just deal with gluten as they find it - they make gluten-free bread and so on. Hasn't helped their migraine at all, unfortunately, but it has helped their digestion.

Vista Basic has accessibility features that I utilize with some success. I have a nice, expensive glare screen that's helped too. Add polarized sunglasses and right now, I think this is the best I'll be able to get. Know what helps me a lot too? There's this neat free program called WorkRave that will let you set a timer feature to remind you to take breaks from your computer. It even walks you through excellent stretches and exercises at the beginning of the breaks, if you set it to, that have been VERY helpful for me. You can set the length of your computer "day", how long between short breaks and longer breaks, how many stretches and exercises you want at a time, generate reports of your computer usage--and it's free.

If anyone is interested I'll try to find a download site. I believe I got it from CNET but it was a while back and I don't remember precisely now.

Thanks for your comments!

 

Fascinating! I know many celiacs report that they can handle sourdough, soy sauce, and other sources of wheat where the wheat was fermented. And there are similar reports on both dairy and soy. Hmm, definitely food for thought! (Though I wouldn't think that gluten is something any of us NEED in our diets--but hey, if there's a way you can handle it, why not?)

 

I see a theme in the non-attack comments: That I'm a "newbie".

Oh heavens not at all. I've had Meniere's for at least 13 years, been diagnosed and treated for 3 1/2 years, had migraine since I was 5 and been under a doctor's care for that since my early 20s. At more than 1200 posts on this board, wouldn't hurt to consider that I've probably been posting about going around the diagnosis and treatment block for a while.

I have got quite a bit going on besides Meniere's and migraine but those are things I'm retired on disability pension for.

I'm always interested in learning something new. People discover new things regularly and research scientists occasionally do too.

It's amazing the insight into the minds of the other posters that we can get from reading their past posts. Many, many of them are available so have at it why not, I say! I do.

 

Valium doesn't help me as much with anxiety as other things like Bach flower remedies, prayer, certain rocks like smoky quartz, rose quartz, and chrysocolla. My green jasper Rosary is a classic example of a combination of components designed to be good for what ails me!

Quartz, prayer, flower remedies, and jasper Rosary? Is the latter beads on a necklace, as in Rosary beads?

 

My first curiosity question to people saying they have celiac sprue would be to ask if they've had an intestinal biopsy. Most strictly medically speaking, even if a doctor tells a patient he or she has "celiac", without a biopsy it's pure guessing on the doctor's part. The blood test for "celiac" does not prove celiac sprue. In order to get any benefit from that blood test, a person has to be completely without gluten for a period of time. During that period of time the body stops attacking the small intestines because the person has stopped ingesting gluten, or is supposed to have stopped ingesting gluten. When the blood test is then performed, no evidence of body-attacking is present because no gluten has been consumed to set it off.

Really, celiac sprue is very, very much like mitral valve prolapse in that way: Neither can be diagnosed by either signs or symptoms. MVP requires an echocardiogram for positive diagnosis and celiac sprue an intestinal biopsy. Used to be that MVP was associated with a "click" sound hear through a stethoscope. Metastudies followed by echocardiogram testing a few years ago found that "clicks" virtually NEVER were associated with MVP. True MVP isn't nearly as prevalent as science thought.

Celiac sprue is an auto-immune disease where the body attacks the small intestines in the presence of complete four-molecule glutens.

Gluten allergy is an IeG reaction to the presence of the gluten protein.

Gluten sensitivity is intolerance to gluten as well as the other molecules that are close to gluten but lack that fourth molecule.

The differences are academic in a lot of ways and mainly of interest to doctors. If gluten bothers you but you're not hospitalized near death (which is how every case of true celiac sprue that my friends have was discovered), you're miserable whether you're allergic or sensitive or whatever.

Whole grains are beneficial to a person's diet in general. They provide things so nutritious that to remove them wholesale from a diet wouldn't do anybody any favors unless it's necessary for triggering reasons, in my opinion. I am HUGE into identifying triggers btw. If anything with gluten triggers you, makes perfect sense to avoid it and to try to make up for what whole grains provide in some other way.

I respect people's statement that they're sensitive to gluten just as much as I would their statement that they have celiac sprue or gluten allergy and I believe everyone else should too. Misery is misery, and I pray for relief for them.

Oh please do check your public library to see if they have Nourishing Traditions. Keep an open mind as you read it but don't let your brains fall out. Not all of it is well documented so testing on an individual basis would make sense for anything that you might want to try.

That's what I did with the phytate thing. I've got a nice batch of bread in the fridge right now that I simply haven't felt up to finishing because of the stupid brouhaha here and how bad it's made me feel.

Right this minute, tinnitus is down in volume to about half of it was a while ago. Had bad pressure from after last TENSday's PT through last night but it's down now too. Disequilibrium is bad though and I tripped when I got up a minute ago to get another ice pace. Now got ice on my ankle too.

 

The Rosary I use most often is made of beads of green jasper stones on memory wire with a sterling Crucifix, a Miraculous Medal, and a St. Benedict medal exorcised by a Benedictine priest. The memory wire is designed to fit around a wrist if a person were to want to carry it on his or her person. The Vatican does not approve of wearing Rosary beads as jewelry.

I have a 14kt gold Rosary ring I wear as well. I'm a former Secular Carmelite. I voluntarily withdrew when my formation director and best friend died of uterine cancer. The chapter never formally accepted my withdrawal so who knows? Maybe I'll go back.

I'm not even sure I answered your question - did I? XD

Here's my mother holding my jasper Rosary.

 

I'm not even sure I answered your question - did I?

Yes, you did. You can only imagine how that computes on a science-minded brain like mine with the quartz etc but if it works for you, then great. What I need is a rosary with valium tabs stuck on it to twirl around and snap off when I need a fix.

S

 

What you need is to be respectful of my religion. I don't care two shakes of a lamb's tail what you believe, think, or need. The Holy Rosary is a Catholic sacramental and to equate it with a drug you take for a fix is--sacrilegious.

Go wrap your "scientific mind" around the double-blind studies done on prayer and people with heart disease. For that matter, go wrap up in any of the studies done on prayer and illness.

Putting you on my prayer list right now. You need it.

 

No, I don't have to respect your religion just like you don't have to respect anything I believe in. And I definitely can't respect something that I don't personally believe exists. No point in going down the road about whether or not prayer works as shown in controlled trials -- it doesn't, but that's not for this forum. Don't pray for me please. I'd rather you spent your time doing something like getting a sense of humour.

S

 

So you're going to bait me and then insult me?

TAKE A HIKE. I'M HERE FOR SUPPORT.

And I'll pray for you. I DO NOT CARE WHAT YOU BELIEVE OR DON'T BELIEVE. It is utterly irrelevant. What is relevant is whether or not you exercise normal civil behavior regarding OTHER PEOPLE LIKE ME.

You had no other reason to ask about my beliefs than to belittle and insult them. Who is safe on this board, who? NOBODY.

Take yourself off and insult somebody who can't back up the value of prayer and illness with published, peer-reviewed, well-respected studies.

God bless me, I wish I felt like digging up the studies on prayer and heart disease especially.

Mostly, I'm going to speak to Ray about the dangerous atmosphere he's enabling. It's trickery to let this board stand as a place for anything other than attacks, insults, religion-baiting, and serious negligence. Disabled people who are beaten down, needing support, wanting information, and feeling lost receive very little other than attacks, religion-baiting, thread hijacking for personal reasons, and other things that do not help and can indeed injure.

You like that for a reputation? Being a person who preys on the disabled through an internet bulletin board? You built it with your own hands. Go lie in it.

 

I did not belittle your belief. I just said I don't believe in it (or prayer) because you told me I need to respect it. And I was just being facetious earlier on (and suggested you learn how to laugh occasionally -- actually a psychological examination wouldn't hurt) about the rosary as I always am about valium because it's the only med that works for me and I love the stuff. I would happily grind it on my cereal every morning if it wasn't an addictive substance.

Look, just forget I ever said any of it OK. I don't want to wind you up or upset you.

 

I intend to get copies of the Terms of Usage and the User Agreement. There are rules to protect people like me from people like you.

Ray has a responsibility to prevent discrimination against participants based on a number of situations including religious discrimination. There is a pervasive atmosphere of hate and discrimination on this bulletin board.

There are rules in place to protect people like me from people like you.

 

~

 

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That is why I need to change the title of my thread in the database. I did not mean to imply that you were a newbie to Meniere's. My thread was originally intended for newbies to this forum, who may not have been aware of the information that I compiled in that thread.

I called it to your attention because I thought you might find some helpful information there there, perhaps something that you have not yet thought of.

I can't for the life of me think of what to call that thread, though, so if you have any suggestions, I'm all ears!

 

Taximom, maybe something like:

"Need relief - try these options"

"Treatment options for all"

"Tried and true = relief for you"

 

You seem to be extremely well-read on the subject of celiac. However, here I strongly disagree with you.

In the last few years, the thinking has changed on celiac. The intestinal biopsy, which used to be the defining criteria for the diagnosis, is now seen as relatively inaccurate, and no wonder: with roughly 22 FEET of intestine, and the fact that villi damage is usually patchy and invisible to the naked eye, those 2 to 6 two-centimeter biopsy samples can easily miss damage that is already there. Moreover, in adult-onset celiac disease, there is a significant period of time where damage is occurring to the body, but villi damage has not yet occurred.

It's rather like diagnosing cancer only when stage IV has been reached.

And there are more and more instances where gluten-induced damage occurs OUTSIDE the intestines, either before villi damage occurs, or completely independent of villi damage. Dermatitis herpetiformis is the most well-known example of this, but neurological damage is another.

It's rather like Meniere's "Disease," which is defined by symptoms and exclusion--but progress in determining CAUSES of Meniere's symptoms is hampered by the definition ("there is no cure," "it's not possible to find the cause," etc) . Celiac Disease is defined by an out-of-date, invasive procedure which is only accurate under certain narrow parameters: there MUST be villi damage, and the surgeon MUST be lucky enough to take samples from the areas that are damaged. Those parameters ignore the fact that celiac can and does occur outside those parameters!

The intestinal biopsy may have been cutting-edge technology 50 years ago, before today's sophisticated blood work was available--but it's obsolete and unnecessary now. Yet, doctors persist in calling it the "Gold Standard" of diagnosis, partly because it WAS the very definition of celiac disease, and partly (for some, at least) because it was a much more profitable way of diagnosis. And also, for some, because it was the only way to convince patients that they really needed to avoid gluten for a lifetime.

Some of the celiac websites do still list the biopsy as the "Gold Standard" of diagnosis.

There is also disagreement amongst the experts on what exactly constitutes gluten sensitivity. Some believe it to be "early-stage" celiac, before enough villi have been damaged to fit the definition of the diagnosis. Some believe it to be a completely separate entity. And some believe that the whole structure of the diagnostic criteria is upside down, and that the term "celiac disease" ought to be the umbrella term, with sub-classifications based on different presentations, and including various kinds of gluten sensitivity.

But most of these experts, when pressed, agree that not enough is known, and that past assumptions have been incorrect.

Now, I haven't had a chance to look up the book you recommended, but I can't help wondering if
using only fermented grains might be a huge key in avoiding triggering celiac disease in the first place. However, once it has been triggered, even fermented grains can trigger the antibodies and do damage. And I believe that there are factors that trigger autoimmune disorders, including food sensitivities (such as vaccines).

If any of your other issues are autoimmune, I would suggest that you still consider that something in your diet might be a factor (but it sounds like you are very thorough and probably already have ruled everything out). Have you ever looked into raw milk? (I'm not necessarily recommending it, I've just heard and read a lot about it, and know people who swear by it's having had a tremendous effect on their autoimmune issues, so I think it's worth mentioning.)

 

That last one is really cute!

Maybe I should start a thread, asking for help with titles. It should be interesting to see what everyone comes up with!

 

Studio please don't make fun or use the Holy Rosary as a joke or in fun. It is also very Holy to me. Thank you I appreciate your understanding.

As far as being addicted to valium, I don't know how many mg's your on. I'm on 2 mgs 3x a day I get a prescription for 90 per month I had 34 left over before my renewal.. I don't believe they are addictive. If I don't need one I don't take one.