CRPS, ANS dysfunction, and chronic vertigo

The central nervous system is bathed in fluid. This fluid provides a buffer against shock, as well as providing a good medium for the transmission of chemical signals. (Electrical signals are handled by the neurons.) The central nervous system is extremely sensitive to dehydration, which is why headaches are so common: most people are somewhat dehydrated. We consider ourselves too busy to drink water and whizz it out again.

Water is also the main ingredient of blood and lymph. These two essential fluids bring nutrition to the cells, transport chemical signals such as hormones and regulatory signals, and carry away cellular garbage. When there’s not enough of them, that doesn’t happen very well. More garbage piles up in the tissues, aging happens faster, disease trends faster, our muscles get stiffer, it’s harder to recuperate from injuries and illnesses, our sex lives suffer, and we just don’t feel as good.

With that in mind, not having the time to drink in water, process it through, and whizz it out again doesn’t really make sense, but a lot of us are really attached to that idea.

Reality checks

One of the really ducky things about diseases like CRPS, especially when there is strong autonomic involvement, is that normal quantities of fluids (and vitamins, proteins, and other nutrients) are often inadequate to our unusual metabolic needs. It may be possible for a basically healthy person to meet all their needs with three good meals and three or four liters of water per day, but for systems so consistently under siege as those with CRPS, it may be impossible to meet metabolic needs within these (otherwise very reasonable) parameters.

I have several friends with terrible vertigo, due to autonomic dysfunction in CRPS. This isn’t the, “I held my breath too long,” kind of dizziness. This is the kind of dizziness where you can’t keep your feet under you, you feel like you’re going to throw up, and it JUST WON’T QUIT.

The mechanism behind this has only been researched recently. It’s not very well understood. I’m hoping for an informative comment from an expert on this…

What’s happening (partly) is that the vessels, which are directed by the autonomic nervous system, are flopping open too much. This means that the normal amount of fluid in the blood, lymph, and cerebrospinal fluid has to fill a space that’s considerably larger than normal. What you get is a type of hypovolemic shock, where the brain and major organs simply can’t get enough nutrition, oxygen, and garbage collection.

This normally happens on a short-term basis, after some assault on the system; normally, it’s either corrected quickly, or the person dies.

There are very few instances where this happens continuously over time, but with CRPS, some people have to live with it. It can make doing anything impossible, and if you try to imagine, just for 5 minutes, what it’s like to be that desperately dizzy and try to do anything — even get a fork to your mouth without bloodshed — you’ll see what I mean.

Sometimes, these symptoms can be somewhat reduced. There are pharmaceutical and mechanical approaches, each with its drawbacks and benefits. Since doctors (and many patients) tend to think in terms of pharmaceuticals first, let’s start there.

Pharmaceutical management

Whenever you think in terms of disease and pharmaceuticals, it’s important to keep in mind that:

  • Every system is unique.
  • Every system with CRPS is even stranger.
  • Unless you’re a doctor getting a visit from a pharmaceutical rep, there is no such thing as a free lunch. Everything you take in affects your whole system. With our systems under siege, it behooves us to be mindful of our chemistry.

NB: This is not intended to diagnose, treat, or cure any disease. Consult your physician with any questions, and if your doctor can’t give you a credible answer, get a referral to someone who might be able to.

Vasopressors, which can help restrict blood vessel size, have mixed results. They depend on the regulatory system being able to work somewhat, which is problematic in CRPS. Moreover, they have their own side effects, and given what a cocktail of medications most people with CRPS are on anyway, this can be quite noticeable. It has to be handled on a case-by-case basis.

Anti-dizziness pills, such as Atarax, affect the central nervous system and tend to make people sleepy and goofy. They are related to antihistamines and acid-suppressing medications (H2 inhibitors), and for those with hotwired immune systems and the nutrient assimilation problems common in chronic CRPS, they’re not without side effects. Moreover, because they address only the generic mechanism for dizziness, but not the particular mechanism for CRPS/ANS vertigo, they don’t necessarily help in these cases. Also, case-by-case basis.

Some SSRIs, typically used as antidepressants but extremely effective for nerve pain, can also provide support for the ANS. There is additional benefit to the use of SSRIs, because of their assistance with the nerve pain component of CRPS; when they can also improve the autonomic nervous system, it’s a big deal. Naturally, SSRIs being the idiosyncratic category that they are, it can take a few tries to find the one that works best in each person’s system. As I learned the hard way, getting the dose right can be a long and interesting task, given the idiosyncratic nature of our systems.

Mechanical management

Mechanically, it’s possible to increase blood volume by taking in lots of fluids, even if you already drink “enough.” “Enough” is a relative term, and what’s “enough” for a person with a normal autonomic nervous system may be “completely inadequate” for somebody with vertigo due to CRPS.

Blood pressure is a complex system, involving more than just fluid, vessels and the brain. Maintaining electrolytes helps contribute to a healthier fluid balance, and towards that end, sometimes doctors suggest increasing your salt intake. That only raises your blood pressure when you already have a predisposition to high blood pressure, so it may not be obviously useful; however, adequate sodium is important in maintaining renal function and supporting potassium levels.

Potassium is another key electrolyte, along with magnesium (found in Epsom salt), calcium, and bicarbonate. It doesn’t take much; four or five of the smallest grains of Epsom salt, stirred into a glass of water, can make a noticeable difference when you are magnesium depleted. Also, it usually makes the water taste better.

It’s easy to tell when you’ve taken too much, partly because it doesn’t taste good, but especially when it gives you the runs. Less is generally better than more!

Bicarbonate is better managed by eating plenty of vegetables, rather than trying to supplement and get the dose just right. Having an overly alkaline system doesn’t feel very good, either.

Calcium and magnesium are present in food, especially if you’re eating plenty of nuts and leafy greens. If you have CRPS, you really want to eat plenty of nuts and leafy greens! They provide so much in the way of A and B vitamins, antioxidants, minerals (which support cellular processes and regulation), healthy fats (which help your body absorb your nutrients and protect your nerves), fiber, digestible protein (which helps your body absorb the calcium), and so much else of what your body really needs.

Activity, even horizontal activity, even just stretching out gently in bed, provides the body with much needed prompting about how to keep things moving. It keeps your muscles loose, so that your body is more comfortable to live in; it also activates sensors in your joints which communicate with your body’s regulatory mechanisms, and this helps with maintaining blood pressure (one can only hope it helps enough.)

Any movement is better than no movement.

Changes in position should happen slowly, which is terribly frustrating, but it’s going to take as long as it takes. If your body doesn’t get to move, it forgets how to handle itself in movement. This becomes a negative feedback loop.

So, keep moving, even if you’re not moving in any way that the doctor would recognize. Frankly, most doctors are somewhat limited in their ideas of what constitutes exercise. Most of them have no trouble walking from the car to the office, let alone from the bedroom to the kitchen.

Don’t let perfection assassinate your drive towards improvement. Do what you can, and don’t sweat the rest.

  • If you can’t run around the park, walk around the block;
  • If you can’t walk around the block, practice ballet or t’ai chi with one hand on the back of the sofa;
  • If you can’t do that, fire up YouTube and do chair qi gong or chair yoga;
  • If you can’t do that, stretch out gently in bed, and do range of motion exercises. (This is a wonderfully pretentious term for moving each limb all the way up, then all the way down; all the way in, then all the way out.)

There is always something you can do to keep your joints active.

Moving your joints sends a message to your regulatory centers that they need to pay a little more attention to your blood pressure. That’s why it’s important to stay active. Our regulatory systems are screwed up enough; we need to keep them gently tuned, and be persistent about it, even when it seems absurd to do so. The habit of activity will serve you well for the rest of your life.

I’m aware that there are some herbs that have tonic effects on blood pressure and possibly the ANS. I would love to learn more about that.

Assume there is a future, and that what you do, even little things, can change how it goes.

That’s a good general policy, anyway. Especially with CRPS.

While I’ve known all this for many years, applying it to CRPS has been an education. When I’m able to focus a little longer, I’ll put together some references. Meanwhile, any of you who have references, either to support or contradict any of this, would be very welcome to post them in the comments.

I look forward to better science and better medicine for chronic vertigo in CRPS. It’s so thoroughly disabling, yet so thoroughly underrated.

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Closed-heart aortic valve replacement, good surgery and good science

Here is an article from a San Antonio, Texas paper about replacing the aortic valve in the heart without cracking the chest, but instead using a minimally-invasive catheter technique:

http://www.kens5.com/news/New-heart-valve-replacement-doesnt-involved-open-heart-surgery-146475805.html

This is absolutely thrilling news. Open-heart surgery is one of the most inherently worrisome and fraught forms of surgery, with an unbelievably painful post-op recovery phase. Simply cracking the chest is a big deal, and anything they do after that might be tricky but it’s not nearly as shocking to the body.

Taking the chest-cracking out of heart surgery is the single biggest change we can make to safer, saner, faster-healing, less complicated heart surgeries. We WANT people to survive the experience intact, we really do!

Aortic valve issues are, as I recall from my ICU/Telemetry nursing, one of the more common heart issues; although it’s not often life-threatening, it is often life-limiting, because without that “aortic kick” that the heart gets from a good, solid snapping-closed of the aortic valve during a heartbeat, the pumping action just isn’t as good, and that has knock-on effects that can pile up over time.

Weak aortic valves can contribute to everything related to an impaired heartbeat, including blood pressure, vessel competence (think of congestive heart failure and tissue swelling/edema), and most obviously to cardiac hypertrophy, where an underpowered heart grows extra muscle to try to push blood around. What that really does is create more demand for blood from the heart itself, and push more blood back out the incompetent aorta!

Now that surgery can correct aortic valve issues without open-heart surgery, watch the medical news over the next 2-3 years: you’re going to see a lot more studies directly relating aortic valve problems to other conditions, like those mentioned above. Why now? Because, once a problem can be solved, physicians are much more willing to look at the problem directly.

Just like the rest of us. 🙂

It’s important to note that, for people with CRPS who have to avoid surgery as much as is compatible with life, and for those with dysautonomia for other reasons, this surgery is a game-changer. No longer do we have to choose between increasingly incompetent valves and a lifelong upsurge in agony, disruption, and dysregulation. Now, we can have a surgery that goes near two major nerve bundles but, if properly done, touches neither; solves the problem and gives us our hearts back; and lets us get on with making the best of our lives.Talk about a win/win!

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Link between fast food and depression confirmed, not clarified

This article states that around 5% of non-depressed people go on to develop depression when they eat junk food of the baked-goods variety (like croissants, pecans spins and Twinkies) or fast food.

Link between fast food and depression confirmed

The authors assume the link is causal (fast/junk food causes depression), but I don’t see why. Many people only eat fast food and carb-rich junk food when they’re already depressed and want the temporary solace (and serotonin/insulin hit) of comfort food. It might be smarter to eat more trail mix, olives and avocados when we’re depressed, and leave out the Twinkies, but the fact is they cost more.

So, is the fast food/junk food self-medication for depression, contributor to depression, or both? It makes more sense to view it as a sign that something is amiss, rather than leaping to the conclusion that fast/junk food itself is the problem.

When people need to self-medicate, they’re going to find a way. And at least fast food is not going to cause as many accidents as alcohol, as much ruin as harder drugs, or as much disease as compulsive sex — all of which are popular forms of self-medication for depression.

Something to consider… We need not leap right to the blaming mentality. We can treat these changes in habits as useful clues instead.

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Repeated stress knocks out the prefrontal cortex

… In a number of ways.
This article describes a new finding which relates memory loss and cognitive dysfunction to a loss of glutamate receptors in the prefrontal cortex (PFC):
body=http%3A%2F%2Fwww.sciencedaily.com%2Freleases%2F2012%2F03%2F120307132202.htm&subject=How+repeated+stress+impairs+memory
They state that this is why the PFC tends to falter in the face of repeated stress: the receptors for one of the key neurotransmitters become depopulated, leaving fewer sites to accept the glutamate and allow that part of the brain to do its job.
Cognitive impairment in the face of repeated or chronic stress is not a monolithic problem, though. Memory and decision-making are probably the most complex of brain tasks, and there are plenty of things that go wrong when memory and cognition fail.
Other factors include dopamine depletion, leaving less of that transmitter to carry messages back from the PFC, thereby making executive decisions harder to make and still harder to follow through on. (I wrote a previous post on dopamine and decision making. I’ll dig it up and link over.)
And then there’s the adrenaline overproduction and overuse that characterizes chronic and repeated stress, leading to disruption of the hypothalamic-pituitary-adrenal axis (the body’s entire signaling structure for body processes) which contributes to brain dysfunction in still more ways: by disrupting sleep, which disrupts memory formation and impedes logic; and by contributing to the rise of metabolic syndrome, creating less stable blood sugar — which, in the brain, adds considerable insult to injury: a hungry brain is a low-functioning brain.
Take your vacations. Simplify your life. Move your body around regularly. Meditate early and often. If you cherish your brain, you might as well let it work — and that means getting a half-Nelson on stress before it gets one on you.

Links:
The article on overuse of dopamine (on my Living Anyway blog): http://livinganyway.blogspot.com/2011/03/dopamine-poverty-and-pain-lighter-side.html
Another Biowizardry entry on neurotransmitters: http://biowizardry.blogspot.com/2011/08/scared-of-wrong-things-role-of-mao-in.html

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Numeracy: The educational gift that keeps on giving?

This is about what we used to call numeric literacy:

http://www.sciencedaily.com/releases/2012/02/120210133346.htm#.TzdCY4vl1xg.mailto

I have problems with using the word “numeracy” to mean “numeric literacy”, but I can adapt. To me, the word “numeracy” means “of or relating to numbers”; therefore, to be numerate means to be of or relating to numbers, and that doesn’t make sense. 

This spasm of reflexive linguistic conservatism will pass and then we can get to the point…

Numeric literacy (however you name it) results in better decisions. Those who are numerically literate are better able to understand information that’s represented by quantities and numbers, and not be confused by sloppy descriptions and poor representations. They have better outcomes in health care, work and other areas where decision-making really pays off. 

The fun part is, that this article’s writer makes the point that the spin doctors are gonna pounce on this, as if they haven’t already:

This has implications for how policy makers and others should communicate about the risks of medicines, earthquakes, climate change, and the stock market.”

Caveat emptor, from here on out!

Make your decisions emotionally if you must, but get the data first, so at least you can really see what you’re risking. 


Then, remember your fifth grade math and see how the numbers add up. (The kinds of statistics that get published in the news rarely require anything more, so don’t let the math intimidate you.) That intellectual integrity can save your life. 

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Blood sugar and mood

“ScienceDaily (2012-01-10) — Patients simultaneously treated for both Type 2 diabetes and depression improve medication compliance and significantly improve blood sugar and depression levels compared to patients receiving usual care, according to a new study.”

http://www.sciencedaily.com/releases/2012/01/120110093559.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fmind_brain+%28ScienceDaily%3A+Mind+%26+Brain+News%29

In plain English, this means that people with non-insulin-dependent diabetes need to be treated both for diabetes and depression; when that happens, twice as many get stable.

This falls under the Department of the Blitheringly Obvious, because — as anyone who has hypoglycemia, or has dealt with diabetics knows — depression is the first sign of low blood sugar; low or unstable blood sugar leads to poor decision-making, notably poor food choices; poor food choices lead to unstable blood sugar, and round and round we go.

To break the cycle, both must be addressed. Otherwise, the cycle continues feeding on itself… er, unfeeding on itself. Or something.

As anyone with common sense who has dealt with the mentally ill knows, the first intervention is a proper meal. It’s simply amazing how things improve with a little real food inside.

Unstable blood sugar worsens pain, impairs memory, and limits cognitive function. Low blood sugar specifically creates an unhappy state.

A hungry brain is not a happy brain!

Treating type II diabetes without treating depression, or treating depression without treating underlying type II diabetes, is not a recipe for success. The fact that as many as one third of these diabetic patients even get better, is pretty remarkable. Treat both, and over 60% of these people go back to cheerful, stable, productive lives — not needing sickleave, additional benefits, or other direct and indirect expenses.

Sounds like a good cost/benefit profile to me!

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Valuable gadgetry means good data

OK, this stuff is cool enough to make me want to keep my iPhone:

iPhone glucometer:
http://www.wired.com/gadgetlab/2012/01/video-ihealth-smart-glucometer/?utm_source=facebook&utm_medium=socialmedia&utm_campaign=facebookclikthru

iPhone blood pressure monitors & trackers:
http://mashable.com/2011/07/03/review-two-blood-pressure-monitors-for-iphone-ipad-video/

I’d like to design a mobile app for tracking and managing pain. Flareups and neurotoxic food sensitivities wouldn’t stand a chance. Touchscreens rock for radio buttons and simple data entry; just have to make it easy to pick what you need and dump it into a dashboard with different ways of viewing the data — historically, by symptom, by factor; graph, chart, etc.

Collecting and tracking your own data is key to surviving and thriving with a long-term condition.  It is possible to make good use of gadgetry, though it’s not something I usually focus on.

Any of you developers want to write the backend?

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Gender & personality — the US isn’t everybody!

This ScienceDaily article reports on a study which states that the personality differences between men and women are simply enormous and have been substantially underreported for years:

http://www.sciencedaily.com/releases/2012/01/120104174812.htm

However, if you read the actual methodology used in the study, you’ll see that the entire population studied was from only one country, the US:

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0029265

“Personality measures were obtained from a large US sample (N = 10,261)”

This is culturally arrogant at best, but it’s now intellectually indefensible. It has recently been demonstrated that one of the most profound gender differences in the brain (math ability) is purely a cultural artifact, when you look at international populations:

http://www.sciencedaily.com/releases/2011/12/111212153123.htm

Therefore, what the original study says — that there are enormous personality differences between the genders — is deceptive. All it means is that, in the U.S., huge gender-based personality differences are tolerated, or even encouraged and trained.

As an international traveler all my life, I could have told you that for free!

In the math study, one researcher said, “People have looked at international data sets for many years. What has changed is that many more non-Western countries are now participating in these studies, enabling much better cross-cultural analysis.”

In short, there is no excuse for such sloppy social science as the “gender-based personality differences” researchers have perpetrated.

Believe it or not, the U.S. is not a good template for studying the entire human population. It’s only a good template for studying the U.S.

Since these scientists are working from Italy and Britain — both countries with famously self-satisfied national identities — you’d think that would be more apparent to them.

It’s disturbing to see such cultural subjugation in science. One expects a degree of cultural infatuation in other realms (like cinema and music, which depend on cultural blending for their development), but not in science. Science requires a bit more intellectual integrity, if not clearer thinking.

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Glia: all that and a bag of chips — but what kind?

A fascinating study which further clarifies the role of those fascinating, complex, busy busy cells, the glia:

http://www.sciencedaily.com/releases/2011/12/111229131354.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fmind_brain+%28ScienceDaily%3A+Mind+%26+Brain+News%29

ScienceDaily (2011-12-29) — New research indicates that glia cells are “the brain’s supervisors.” By regulating the synapses, they control the transfer of information between neurons, affecting how the brain processes information. This new finding could be critical for technologies based on brain networks, as well as provide a new avenue for research into disorders such as Alzheimer’s disease and epilepsy.

This study indicates that glia regulate the speed of synaptic transmission, slowing or speeding up synaptic events according to what is needed. This means, for instance, that epileptic seizures, which are synaptic storms, relate to glial misbehavior.

The next question is, how? Why? What causes the glia to modulate a given transmission?

I’m looking forward to further studies on this.

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CRPS, HPA axis, and a remarkable void in the science

I just went looking for scholarly articles linking chronic CRPS to the HPA axis damage that has been such a feature of my life. Though me, my cohorts and all my providers have been talking freely about this for years, there was nothing on PubMed and nothing of value in the Google search.

It’s possible to chain together articles that make the point — one on stress and adrenal function, one on stress and pituitary dysregulation, one on chronic neurogenic pain and hypothalamic oddness, one on constant pain as a causor of physiologic stress, and one on CRPS as a source of pain — but academics get squirrelly when you make them link the logic. They don’t want to think; it makes them feel exposed.

Nevertheless, me and my providers, me and my cohorts online, me and hundreds and thousands of people with chronic CRPS, have been taking it for granted all this time that there was a link — because it is so bloody obvious that there is.

However, the studies don’t exist.

The connection is obvious, but unwritten.

The data are sitting there, waiting to be captured.

The study subjects are right there for the recruiting.

It’s like the topic is standing there with its pants down and its pockets full. An easy target — and a rich one!

This is ridiculously obvious, and you know that all the subsequent work on CRPS and anything related to the adrenals, hypothalamus and pituitary would have to quote whoever documented it. Tenure, much?

Who wants to find the funding and put together a team? I would be happy to help. If I had the MD and the university contacts, I’d already be making calls. Please, whatever I can do to help, just let me know. Make it happen.

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