What To Do When You Finally Figure Out Why It Feels Like Your Head Is Being Torn Apart: Cluster Headaches, vol. 1

YOU.

WHINE.

Because you know who has time for this???

NO ONE.

Especially not this lady, who has been dealing with headaches ever since the scent of puberty breezed past her in Jr. High and then landed firmly upon her like an albatross, and is well versed with sundry stupid, “not life threatening,” “intense pains” for no good reason.

I swear, if I could boost my immune system with this sucker, or if there was something positive about it, like “cluster headaches increase the ability to see infrared light,” or “cluster headaches allow the user to bend the fabric of time,” that’d be one thing.

But nnnnnnooooooooooooooooo….

Okay, here’s what’s going on.

Last week I was having this pain on the left side of my face/head. No big deal, I’ve had headaches on the left side of my face/head before. I’ve had headaches on the top of my head, the bottom of my head, the middle of my head….all in all, this isn’t my first walk in the park with headaches. NO BIGGIE. Take some Motrin, as I have been advised to do by every single doctor I have ever spoken with about all of my headaches.

Good to go. It goes away, at least to a “dull roar.”

And then it comes back.

And then it goes away.

And then it comes back.

And then it goes away.

And then….OH COME ON. 

There has been no pattern as far as I can see. The headache comes for a few minutes/hours, and then goes away for minutes/hours. I might think it is finished, and then all of a sudden it’s back and I am holding the left side of my head, like it’s about to fall off.

I am hydrated (always the first thing to check, fyi), fed, rested, stretched, light exercised, rested again, showered, I am not bored, I am intellectually stimulated (for us cerebral types, the lack of intellectual stimulation can lead to intense frustration, which can lead to headaches or anxiety). I am not depressed, I am being deliberate about being happy, I am taking my Motrin (because sometimes I am so deeply annoyed with being in pain, again, that I don’t want to give it the satisfaction of being treated. Us overly-stubborn types know what this is about).

I have considered maybe I am having these debilitating headaches because I have a vitamin D deficiency, even though I have never tested low….but who the heck knows, maybe I am now. So I’m taking Vitamin D. And iron. I have Fish Oil on the stand-by…

I am willing to take anything that solves this problem, because it feels like my head is being torn apart from behind my left eye, and the pain is searing to the point that I cannot stay conscious and I am drugging myself and sleeping the pain away, and this, frankly, is bullshit.

I have completely run out of ideas on what this stupid, coming and going headache could possibly be. It isn’t anything I’m eating. It isn’t anything I’m doing. It comes in waves, and lasts a while, and then goes away….and comes back again, and this has been going on sporadically for two weeks.

So, anyway, that’s a cluster headache.

diagnosis-of-headache

According to the Mayo Clinic:

“Cluster headaches, which occur in cyclical patterns or clusters, are one of the most painful types of headache. A cluster headache commonly awakens you in the middle of the night with intense pain in or around one eye on one side of your head.”

Oh. That’s fantastic.

“Bouts of frequent attacks, known as cluster periods, can last from weeks to months, usually followed by remission periods when the headaches stop.”

According to WebMD:

“We don’t know what causes them, but we do know that a nerve in your face is involved, creating intense pain around one of your eyes. It’s so bad that most people can’t sit still and will often pace during an attack. Cluster headaches can be more severe than a migraine, but they usually don’t last as long.”

“A cluster period generally lasts from six to 12 weeks. The starting date and the duration of each cluster period might be consistent from period to period. For example, cluster periods can occur seasonally, such as every spring or every fall.

The pain usually ends as suddenly as it began, with rapidly decreasing intensity. After attacks, most people are pain-free, but exhausted.”

Gotta admit.

I’m pretty exhausted.

 

 

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Celiac Discussions: Let’s Talk About Beer.

As a Celiac American, there are many things I cannot eat.

Things which will make me very sick. Can’t breathe. Heart palpitations. Muscle tension. Flush cheeks. For 8 hours…

You know, the basics.

So things I avoid like death are:

Doughnuts. Pizza. Sandwiches. Scones. Crumpets. Eclaires. Toast.

You know, things that taste wonderful.

My journey into Celiac territory has always been interesting. Not only do I get to enjoy foods that are naturally gluten free, such as steak, sushi, ice cream and wine, but I also get to explore new ways of cooking in order to still enjoy recipes that traditionally use flour.

I’m lookin’ at you, gravy.

 

However, I have always enjoyed beer.

Whaaattt….beer?? But…beer is made from wheat, rye and barley?! You can’t drink beer.

What if I told you I have never had even the smallest reaction to beer.  Ever. Because beer is gluten free.

 

 mind. blown.

 

 

Here’s the deal: there is science to back this up.  I am going to be quoting many (many) places which have the results of what the question is, what it means, how it compares to other products…and then we can all continue to enjoy Irish Death in peaceful harmony.

 

Thank you.

1) What is gluten, and why do beer companies claim their products are gluten free, if they are using rye, wheat and barley?

 

Celiac.com: “There have been numerous claims that traditional barley-based beers are gluten free or that all beers are gluten free. Unfortunately, the area is very grey and substantiated on technicalities. The purpose of this post is to eliminate the confusion about gluten as it relates to beer.

Gluten is an umbrella term used to describe a mixture of individual proteins found in many grains. Celiac disease (celiac sprue or gluten intolerance, gluten sensitivity) is an autoimmune disorder that is triggered by the ingestion of some of these glutens.

People with classic celiac disease are intolerant to the gluten proteins found in wheat, barley, rye, spelt and a couple other lesser known grains. All these grains have a relative of the gluten protein.

Interestingly, corn, rice and sorghum also have gluten proteins but are not toxic to celiacs.

Herein lies one of the fundamental problems; the use of the term gluten intolerance to cover only certain gluten containing grains is confusing for consumers and food manufacturers alike. Unfortunately, it seems that the inertia for using celiac disease and gluten intolerance as synonyms is unstoppable. Therefore, it becomes the responsibility of both consumers and manufacturers to make sure the terms being discussed are defined and understood.

As this relates to beer, there is a gluten protein found in barley. This protein is known as hordein. Wheat gluten is known as gliadin. Rye gluten is known as secalin. Presently, assay tests (or lab tests) are only commercially available for the testing of gliadin. We are unaware of any tests for hordein or any manufacturer that presently tests for hordein (Note: If you know of anyone that does in fact test specifically for hordein, please let us know). Therefore the idea that a barley based beer can be considered gluten free based upon the lack of testing is very difficult to fathom. It should be understood that a company using an assay test for gliadin to test for hordein will not return accurate results.

There has been widespread speculation that the brewing process eliminates these hordein proteins making all beers gluten-free. Although commercial assay tests for hordein are not available there is conclusive evidence that the brewing process does not degrade hordein to non-toxic levels. A research study in Australia on improving beer haze shows that hordein is still present in beer after the brewing process (http://www.regional.org.au/au/abts/1999/sheehan.htm). Therefore, claims that hordein or gluten is destroyed in the brewing process is unsubstantiated and clearly, based upon the Australian research, is highly questionable.

Based upon the continuous claims by beer companies that beers are gluten free, it is clear that the issue is misunderstood and, as always, it is up to the consumer to educate them on the facts. Hopefully, the information provided here will give consumers and manufacturers alike the ability to discuss these gluten issues intelligently and effectively.”

 

 

2) So, why can people with Celiac have 20ppm of gluten, if gluten is technically a toxic entity in their bodies?

Gluten Free Dietician: “In 2007 Catassi and colleagues assessed the effects of consuming capsules containing 0, 10, and 50 milligrams of gluten on the intestinal morphology of persons with celiac disease who reportedly were compliant with a gluten-free diet (Am J Clin Nutr 2007;85:160-166). During the study participants maintained a strict gluten-free diet  and were only allowed to consume specially marked gluten-free cereal foods containing less than 20 parts per million gluten. Gluten intake from the diet was estimated to be less than 5 milligrams. Researchers found a significant decrease in the villous height to crypt depth ratio in the group taking the 50 milligram capsule. No significant change was found in the vh/cd ratio in the group taking the 10 milligram capsule.”

So, we can have up to 20ppm of gluten in one serving of food before there are any adverse affects to our bodies.

 

3) How much is 20ppm, for those of us who are not science-inclined?

Gluten Free Dietician: “To break it down, 20 parts per million is the equivalent to 20ppm per kilogram of food. An average slice of gluten-free bread containing 20ppm of gluten (which is all of them- link to results) would contain 0.57 milligrams of gluten. Even if you ate ten ounces of foods containing 20ppm gluten, that would be just 5.70 mg of gluten. This level is just over half of the 10mg found by Catassi’s study to be a safe level so you would need to eat a whole lot of 20ppm food each day to surpass the “safe” level.

We must also consider that 20ppm is the highest level of gluten that foods can contain to be considered gluten free so most of the products you are eating will contain less than this amount.”

 

celiac.com

Also…

The Chameleon’s Tongue: “Fasano’s study tells us that 50mg of gluten per day damages the bowel of coeliacs, even though it doesn’t cause symptoms or show up in blood tests. That’s about as much gluten as 1/100th of a slice of standard wheat bread contains. A normal western diet contains 10–20g of gluten each day, which is 200–400 times the minimum amount of gluten that damages the small intestine of a coeliac patient. Fasano’s work also showed that there is a lot of variation between coeliac patients, and some experienced symptoms with as little as 10mg of gluten daily.”

My tolerance to gluten is definitely going down, the older I get and the longer I have been on a gluten free diet.  My tolerance level, at this point, is at about 20ppm, at which time I am in bed in pain.

So it is roughly the equivalent of 1 slice of Udi’s bread.

 

4) Get On With It!! So, how much gluten is in beer?

 

BeerAdvocate:

“My impression is that many beers (including craft, of course) have pretty darn low levels of gluten, say around 10-15 ppm. Many obviously have a lot more (stronger, fuller-bodied, wheat beer etc.).”

 

  • 10-15ppm of gluten is 0.01mg of gluten.
  • A 1oz slice of white bread contains about 3.5g of gluten.
  • 10-15ppm of gluten is equal to half of 1/100th of a piece of bread.

 

 

“You also have issues with how much a person can tolerate, under 20ppm is typically considered safe for someone with celiacs, however there are people who still react even at those low levels.”

Also,

This one was cool, you can actually test for gluten in the beer. Some had more than others, but most had <5ppm.

Then there was this:

Celiac Disease, Beer and Brewing
By Michael J. Lewis, Professor Emeritus of Brewing Science
Department of Food Science and Technology, University of California Davis
“Some celiacs drink modest amounts of some beers without triggering overt symptoms of the disease and some beers do not register, and most barely register, on the scale of analysis currently used to measure gluten (personal communications). There is therefore good reason to examine the proscription of beer from the diet of celiacs. “
“Ordinary processes of beer manufacture completely eliminate native barley proteins from beer; some polypeptides survive the process. However, because prolamin-derived polypeptides (hordeins) cause haze problems in beers, brewers have a direct interest in removing them; processing to achieve a gluten-free status, therefore, is perfectly in line with brewers’ practices used to manufacture a haze-stable product. Celiacs and brewers have common cause.”
Two questions arise: Can brewers make a good argument for beers as being gluten-free? Or, in addition: Can brewers envisage reasonable processing practices that will make some beers (at least) gluten free? The answer to both questions is “Yes!”

 

“Thus there are many reasons why beer might be considered naturally gluten free and might justify the risk some celiacs take in consuming some beers, especially light beers. Also, as discussed, many strategies suggest themselves by which beer might be rendered gluten free. There is however one consideration, referred to earlier in this paper, that needs to be revisited here: all the arguments of why beer should be considered naturally gluten free or rendered gluten-free by process modification, depend absolutely and ultimately on one thing: brewers must be able to demonstrate without equivocation that they have succeeded in producing a gluten-free product. This can best be done if the nature of the offending peptide is known and reliable methods for measuring it are developed. (Currently an ELISA method linked to wheat gliadin is used (1); beers barely register on the scale of measures by this method). Therefore, the brewing industry might usefully join with the medical community in seeking a more exact definition of the peptide sequence that triggers the celiac reaction and help to develop methods to analyze it. Beyond such analysis is the potential for clinical trials to demonstrate directly whether or not beer can trigger the celiac auto-immune reaction. “

5) Finally, just be careful. No matter what science says.

Food Republic: “If you have a food allergy that isn’t life-threatening, try carefully fiddling with it like one lactard friend of mine does with aged cheese — cream cheese would bring her right down, but a little grated parmesan on her pasta is fine. Another friend who’s allergic to most fish discovered that salmon doesn’t affect him the way shrimp would, due to its lower iodine content. Now his hair is super shiny from all the salmon he’s been eating. You’re stuck this way for life, friends, and allergies have their quirks, so find a silver lining. Or in my case, a silver bullet or six.”

 

So there you have it folks.

Beer has the same amount of gluten, if not less, as the average gluten free product.

Which is why beer is gluten free, in the same manner that Udi’s Gluten Free Bread is gluten free.

 

I don’t always spend all day looking up scientific research,

but when I do,

it is so I can drink beer.

The Cure For Introvert Hangovers: Making Soup

emdhc-t1fni-richard-tilney-bassett

“Extroverts want us to have fun, because they assume we want what they want. And sometimes we do. But “fun” itself is a “bright” word, the kind of word that comes with flashing lights and an exclamation point! One of Merriam-Webster’s definitions of “fun” is “violent or excited activity or argument.” The very word makes me want to sit in a dimly lit room with lots of pillows—by myself.”

-Laurie A. Helgoe, Introvert Power: Why Your Inner Life Is Your Hidden Strength

It is undeniable that dog owners tend to have dogs which reflect themselves.

You have seen those comparison pictures, where the Winston Churchill doppleganger is sitting next to his English bulldog, sporting matching jowls. Or the svelte art gallery curator with the Afghan Hound companion. Dogs are delightful companions in life, and it only makes sense that we would seek out like minded individuals to accompany us. It would be absurd to introduce a Border Collie into your home if you are more on the homebody side; likewise, a person who enjoys hiking every weekend will find a corgi rather cumbersome on the trails.

Which is why I found a Pomeranian for my home.

Pomeranians are intelligent, playful, friendly, and wonderfully mischievous.  They are definitely more of an extrovert than any other dog I can think of, and require balanced and regular socialization.

They adore you, your family, your friends, your friends’ friends, your friends’ dogs, their friends, the cat, the UPS driver, the UPS driver’s friends and every person they meet when you go for a walk.

They are an active breed, but not too active. They would love nothing more than to go for long walks, run up the stairs, play fetch, run around the yard, hide behind trash cans or attempt to climb a tree.

For a few minutes.

And then they are done. And they need to recharge.

I completely understand the need to love everyone around me, sometimes a little too much (“You can stop hugging me Tamarah.” “BUT I LOVE YOU”.)

I completely understand when I have socialized quite enough, and need to recharge.

Last night I reached the banks of my socialization. I needed to spend time seeing people and being a social butterfly…but my Pomeranian energy limit peaked quicker than I expected.

There has been enough time spent trying to talk over deafening EDM soundtracks, underneath a rotating chandelier which swung gently next to the nefarious trapeze apparatuses (..?).

screen-shot-2017-01-13-at-4-02-27-pmClick here for a video…you know you want to.

I had enjoyed moving from room to room and talking with people in Sales, Marketing, Engineering, and one 8 foot tall man who was the +1 of Stephanie (I think that was her name…). The night was filled with loud, flashing, dancing rooms…it was enormously fun for the extroverts who organized the event, and they did a fantastic job coordinating it all for us.

This morning, however, will be spent in bed. Under a very heavy blanket. In a quiet room. Eating soup.

I truly believe that every great introvert experiences truly great introvert hangovers.

An introvert hangover occurs after you have enjoyed catching up with friends, attending very loud parties, staying up far too late, and talking for longer than half an hour.

The deep and meaningful conversations counterbalanced the well-studied art of small talk; which has its place in conversation, despite the nay-sayers.

On one hand, there was a very good friend who I got to talk to for a long time, over sazeracs and fries, about her service dog training adventures (and some frustrating mis-adventures). This entire setting was completely worth getting dressed up and out of the house for.

On the other hand, through my journey of small talk, I found a farmer from North Carolina who grew up on vegetable farms! How often do you find farmers from North Carolina who grew up on a vegetable farm, in tech? I wouldn’t have known this without the power of small talk.

Other people I met were a couple who also met in high school, and are more than happily married. I also got to see some old friends and catch up with who is having babies, and who is moving to Oregon.

But after the night was over, and Ben and I got on the ferry to come home, my body let me know that it was done.

More than done.

I walked through the ferry terminal and made it onto the ferry. I fell asleep on a bench in the ferry. I got into our car and fell asleep on the way home. I plunged myself into bed and fell asleep under my big, squishy purple blanket. I continued to sleep well into the morning, and finally had my first cup of coffee at noon.

It has been a quiet day here. We have been reading, drinking water, eating some fruits to promise my body that I won’t subject it to sazerac and french fry dinners any more, and making soup.

I love the social adventures I find, and I especially love seeing friends and new friends.

For today, and for this weekend, though, I love recharging and being alone.

 

 

 

 

 

 

 

Deconstructing: Nocturnal Panic Attacks, Which Apparently Is A “Thing.”

IMG_1506

I would prefer to never go to another ER, ever again, for the rest of my life.

Unfortunately, I said that last time, as well. And the time before that. And the time before that.

The dumbest ER visit I ever had was probably the time I smashed my thumb in the car door, and I had to get my thumbnail burnt (cauterized?) in order to release the pressure for the blood that was pooling underneath. That is not a noble purpose for being in the ER, I don’t think, but luckily there was a body builder in triage with me who had the same problem. So, that made me feel a little better.

Or maybe the super dumbest visit was when my guinea pig, Chewbacca, bit my finger and I knew I needed stitches as soon as I saw how deep that cut was. That was pretty stupid, and the doctor sewing me up got a good laugh out of it.

Those were pretty silly visits, and they at least make me feel a little better thinking about them.

Because I have had other visits which haven’t been as silly.

The other visits were terrifying, and it honestly is my goal in life to never revisit them. I would rather not revisit unrelenting SVT attacks where my heart is beating at a rate of 255/minute and not giving up. I would very much not like to have a needle filled with a solution “that will just stop your heart for a second, but don’t worry. It’ll start again” pressed against my arm. I don’t want to be admitted, again, for testing to check for “Sudden Death Syndrome.”

And yet, I voluntarily went to the ER last night.

Because I didn’t know what else to do.  And the advice nurse berated me on the phone to stop messing around and get my butt to the ER. So, off we went.

Here’s what happened.

Saturday morning sprang upon me like a pack of hungry dogs, fighting each other in my chest. The very center of my chest was tight, excruciatingly painful and made it difficult to breathe easily. I woke up with this sudden pain both in my chest and in my shoulders and down the top of my back, and sat up trying to figure out what the heck was going on. I couldn’t lay on my back, because it hurt to breathe. I couldn’t lay on my side, because that hurt too. If I just sat straight up, I was okay. So I sat up and read for about an hour until Ben woke up and asked what was going on.

We’ve been through this before, and he knew something was wrong just by the look of worry in my eyes.

It felt like a panic attack, which I have had before.  tl;dr – they suck. But…I was sleeping. What’s going on??

The last time this happened was a year ago when we were up to our ears in stress from moving, dealing with selling our old house, dealing with half of our things being stolen, the house being (severely) vandalized, etc., etc. So it wasn’t that much of a surprise to have some anxiety problems then. I just took a bath, had some tea, slept it off…for the most part. I mean, the entire time I was also thinking, “THIS IS JUST A PANIC ATTACK AND YOU AREN’T DYING.” I remember it taking a long time to recover, but I felt back to normal in the morning, so I called it good to go.

This time, nothing is particularly stressful around here. We’re chillin’, gettin’ stuff done, and just being generally groovy all the time. And I was ASLEEP. So what’s up??

MDJunction.com says,

“about 10% of all attacks happen nocturnally. However, because of the circumstances, the symptoms of sleep panic attacks can seem to be more intense and terrifying than during the day. And an attack can seem to last longer for many sufferers.”

Mayo Clinic says,

“Nighttime (nocturnal) panic attacks can occur with no obvious trigger and awaken you from sleep. As with a daytime panic attack, you may experience sweating, rapid heart rate, trembling, shortness of breath, heavy breathing (hyperventilation), flushing or chills, and a sense of impending doom. These signs and symptoms are quite alarming and can mimic those of a heart attack or another serious medical condition.”

I can completely concur with this feeling, especially feeling like a heart attack. My chest was tight, it hurt to breathe, I was sweating more than usual, and my back hurt (which freaked me out the most)…and the lingering symptoms lasted all day.

“However, just as with daytime attacks, nocturnal panic attacks symptoms cannot harm you.”

And I know this. I know it is a panic attack, and I know it isn’t harmful, and I know nothing is wrong. I know this.

However, even after staying in bed until noon, taking a walk on the beach, drinking tea, having something to eat, and making sure I was drinking plenty of water…over 12 hours later, I was still feeling it. My chest didn’t hurt nearly as much, but my back still hurt and I was still out of breath when I walked to the bathroom or up the stairs.

I couldn’t mess around with this any longer, and we went to Urgent Care.

Which was closed.

So I called an Advice Nurse in the parking lot. She was doing 20 Questions with me on the phone, until about halfway through she lost her patience with me (which is why I love Advice Nurses) and said, “Listen. I’m hearing your symptoms, and I can hear you talking yourself out of going to the ER. You can’t mess around with chest pain, and you need to get in the car and go. Immediately.”

I said, “Yes, ma’am” and got in the car and drove to the ER.

Which I was trying to avoid like the plague.

The ER I went to was one of the best I have ever been in. They were clean, friendly, and darn quick with everything. I was in and out in record time (granted, we were there for a while, so “record ER time”).

They took my vitals, which were all good (yay exercise!). They gave me an EKG, which looked fantastic. Also, I am going to give them mad props for the stickies they put all over me: normally, those things hurt like crazy ripping them off. But these were like removing a heavy-duty post-it note from your skin. Also, EKGs in the past have taken hours to finish. And this one was a “6 Second EKG.” Thank you, doctors!!

They took a chest x-ray, which showed no signs of aorta leakage, tuberculosis, lung cancer or pneumonia.

IMG_1505I may have asked for a print-out to show the kids…

They also drew blood to test for a heart attack. This was new to me, since I haven’t been tested for that until now, but according to NHLBI.nih.gov: “

“During a heart attack, heart muscle cells die and release proteins into the bloodstream.Blood tests can measure the amount of these proteins in the bloodstream. Higher than normal levels of these proteins suggest a heart attack.

Commonly used blood tests include troponin tests, CK or CK–MB tests, and serum myoglobin tests. Blood tests often are repeated to check for changes over time.”

That test took about 45 minutes to get the results, which is still crazy record time. I was expecting them to mail me the results in 2-3 weeks (#experience). So hanging out in the ER room and playing apps with Ben for a little while was fantastic.

The doctor came back in and said there was absolutely zero indication that I had a heart attack. Which was  A HUGE RELIEF. Also, my pancreas was good…which was just an added bonus for me (it was something in the tests, along with other doctor-stuff they checked for).

So, his diagnosis: we don’t know why your chest hurts.

But, you aren’t bleeding internally, you have no injuries, your blood pressure is fab, you didn’t have a heart attack, you don’t have pneumonia, you don’t have cancer (screw you, google!), you don’t have tuberculosis and you aren’t dying.

Sweet! So, that was that, and we were on our way home.

As we drove home, I was thinking for the first time: are nocturnal panic attacks a thing?? I have just never had one, and it just seems so odd and out of the blue. So, I googled it (thanks google!).

Sure enough, nocturnal panic attacks are a thing.

They’re a little more intense than a daytime panic attack, and it took my body a lot longer to heal/recover than normal.

But after a good night’s sleep, I can say that I feel back to normal this morning! Everything is feeling good, and I have no chest or back pain left.

So, that is the conclusion to the story of my nocturnal panic attack.

Should we ne’er meet again.