Missing The Bike

Bobblehead at the top of Heartbreak Hill, during the Santa Fe Century, 2007

I miss biking. I have no desire to do another triathlon, again. I proved I could do one. The swimming was rough but the running kills me. I just love to bike. I am slow, but who cares.

I have done a few miles around town but am scared what could happen if I am fatigued, 40 miles from anywhere, and my vertigo hits. It is probably not a smart thing to be on two wheels (in silly clothes and shoes not made for walking) and you cannot maintain balance to even stand, let alone propel a bike. But, what the hell. I will bike some more close to home and set my sights on next year.

Worse comes to worse, there are always trikes...

[posted by ♠ Bobblehead ♠]

More on Reactive Hypoglycemia and Duodenal Switch Weight Loss Surgery

Bobblehead, the day before his weight loss surgery: Weight 383 pounds.

Bobblehead last month, weight 180 pounds.

I have been following Jane's blog on her journey after Duodenal Switch 6 years ago. As a matter of fact, she was the first in the UK to have duodenal switch gastric bypass surgery. As I was writing my post on connections between WLS and reactive hypoglycemia Jane posted an article about gastric bypass as a possible cure for diabetes, even more than a sample group who just lost weight. Her blog, Dances with DS, is here: http://satorijane.com/blog/

I emailed Jane and mentioned some of what I was going through. I asked her to consider referring back to Atomic City. She wrote me back, and yes, she reads my blog on a regular basis as I do hers.

Jane is 6 years out, I am 5 1/2 years out. It is uncommon to see a weight loss patient continue to blog about WLS that far out. Being "thin" is "normal" for me, now (though I still see a 400 pound man in the mirror, not one at 180 pounds). Jane and I both want to give accurate pictures of weight loss surgery. It is not a magic bullet nor an easy way out. If you are considering WLS, you should be exposed to all of the information: The good, the bad, and the ugly.

Jane asked me some specific questions. I think it is in everyone's best interest to answer them via a blog. I have nothing to hide. Besides, she is asking good questions.

Jane: I was wondering not long ago on my blog about this very condition when I heard of several RNYers (Roux-en-Y Gastric Bypass) struggling to deal with it. I wonder how many of us DSers are out there suffering from it. Do you know of any others?

Bobblehead: The literature I read only mentions RnY specifically or generic "gastric bypass." The connection is that DS patients have a RnY. Basically, that is a reshaping the small intestine into a "Y" shape where actual digestion only takes place in a "common channel" right before the large intestine. In my case, the common channel is 100 cm long. Earlier patients had the length set arbitrarily. Later surgeries based it on a ratio compared back to the total length of the small intestine. As far as I can tell, I am the only DS patient I know about with this reactive hypoglycemia but I do not believe it. I would bet money that the ratio of RnY patients to DS patients on this is about 1.0. That portion of anatomy change is consistent.Reactive Hypoglycemia is similar to dumping, though, at least in reactions. Dumping occurs when food passes out of the "pouch" of an RnY patient quickly into the duodenum. The body responds by "dumping" a large amount of insulin into the blood. RnY patients usually only experience this with simple carbohydrates (especially alcohol) and can often balance this effect off with protein. Not me. Even a low carb high protein bar will cause my insulin levels to rise and my sugar to plummet. DS patients do not traditionally dump as the anatomy of the stomach entrance into the duodenum is unaltered where it is altered in RnY.
Jane: You say you had headaches - ouch - they sound really painful ... did you have any other 'leading up symptoms?'
Bobblehead: My headaches usually do not hurt my head...ah, the joys of basilar migraines. I see other clear triggers such as drops in air pressure and spinning motions (probably due to my inner ear problems). Flashing lights and other visual stimulation can bring on an attack. So can fatigue. But so far, with my glucose in check, it is clear to me that the main culprit is my hypoglycemia.
Jane: Where you diabetic pre-op? Do you need a special diet of any kind?
Bobblehead: I was not diabetic, although I had Metabolic Syndrome. I figured out that I cannot control this via nutrition. I cut out all raw sugars, went to only whole foods, high protein...Bobbleheadilicous no matter what.
Jane: Did you tell Dr Hess about this?
Bobblehead: I emailed Hess (my surgeon) via his web page. He is retired. He never wrote back. HELP: If anyone has contact information for Hess, please email it to me. You can reach me via the sidebar on the right side of this blog or leave a comment.
And, of course, we shared information on dogs. I have four. A Labrador, a Siberian Husky, a Pug, and a Chihuahua. And three cats, four...wait five birds as Mrs. Bobblehead text messaged me to tell me she bought a baby green-cheeked conure (now our second) in Texas on Sunday...Yes, it is a zoo.
Hope this helps.

[posted by ♠ Bobblehead ♠]

Did my Gastric-Bypass Surgery Cause My Reactive Hypoglycemia?

Bobblehead would take 105 any old day!

I had Duodenal-switch gastric bypass going on 6 years ago. I have had some complications, most minor. An incisional hernia. Loose skin (gone). Bad, smelly BMs (pretty much gone).

But, as I have been writing about, I have had a helluva time with reactive hypoglycemia. I eat, my blood glucose drops. Bad. And that is partially what was driving my basilar migraines.

But is the gastric bypass to blame?

Most likely, yes.

There is more and more evidence in the literature suggesting this is a problem. One report says only 1-2% of bypass patients suffer it really bad. For me, Proglycem works very well. It just was 9 months of PURE HELL to get here from there.

Would I do the surgery again given what I know? Probably, yes. I am controlling where I am now. And again, I am the square peg in the round hole.

But I do not see enough doctors and hospitals promoting gastric bypass suggesting how severe this side effect really is. The Mayo Clinic suggests it might be a side effect but lists none of the preventions or treatments. another, Allina, suggests only nutritional advice (in a nutshell, nothing).

So, what should you do?

I recognize from watching Atomic City's traffic that there are potential weight loss surgery patients viewing this. The odds of you contracting this side effect are slim. The odds that if you do get reactive hypoglycemia it is as bad as the Bobblehead's, even slimmer. If you do, go to your endocrinologist and ask about Proglycem. Show him this web site and some of the journal articles I am linking to later in this post. It is a risk. But the odds you will get diabetes and have a obese BMI are much, much higher and the final effects are much, much more severe.

Articles and Web Sites (caution: these are from doctors for doctors!)

• New England Journal Of Medicine
• Medical Conditions News
• Glucagon.com
• American Diabetes Association

Hospitals Offering Gastric Bypass Surgery and Reactive Hypoglycemia

• Mayo Clinic
• Allina

General Google Search linking Reactive Hypoglycemia and Gastric Bypass Surgery.

[posted by ♠ Bobblehead ♠]

And then there is Iran

Yikes!
(via Snappedshots.com)

You gotta give Iran credit. They keep on trying. No matter how many times they screw up.

Of course, you only need to get things right occasionally. Iran should be a non-threat. After all, without money, they cannot afford technologies (like Photoshop) that make them scary.

But, they got buckets full of money. And a hankering to spend it on technology such as nuclear reactors of peaceful projects (wink wink nudge nudge).

Ugh...

[posted by Bobblehead

Miss Kitty Is In A Wheelchair

Photo by Anders Wiuff

The Bobblehead is not happy about this

I got a text message from Mrs. Bobblehead yesterday as I was in the movies (Hellboy II which had an okay plot but was visually stunning). She told me that a fellow patient of of mother-in-law was now in a wheelchair.

Damn.

"Miss Kitty" is a very cool person. Her Alzheimer's does not appear too advanced (I would wager she has Dementia as well). But it is difficult to tell. Her behavior is pretty good. But she has a difficult time orienting herself in time. Her short-term memory is shot. But the thing that makes Miss Kitty such a joy is her vivacious personality. She is quick to smile and laugh. She is the true cockeyed optimist. Her glass is always half-full.

Miss Kitty was born in Hawaii but grew up in New Jersey. When I see her I always ask how my "Jersey Girl" is doing. She lights up like a sunbeam. She has 2 daughters that I know of. As a girl she had a few sisters. But she was always her mom's favorite.

Jersey Girl was obvious a looker as a young woman. I am not sure of her age now (probably in her 70s) but the years have been kind to her looks. Looks aside, her almost stereotypical New Jersey accent sticks out in the Houstonian nursing home.

Many of the patients with her are in all kinds of personnel hell. Many (including my sweet mother-in-law) can barely speak. Many no longer walk. Most seem very angry and lash out. I cannot help but believe they live in perpetual fear. They do not know where they are, when they are, who are around them, etc. Fear brings on anger.

Not Miss Kitty. She seems to be always happy. Yet, I do see a balance in her emotions. I have seen her get miffed occasionally when a patient near her "goes off." Her response is not over the top.

I saw Miss Kitty in late June right before I left Texas for home. I always make it a point to chat with her (when she is not snoozing in an arm chair). I remember vividly telling my Jersey Girl I was leaving for the Atomic City in the morning. She gave me a big smile and said she would see me soon. "Soon" could mean anything to her.

Mrs. Bobblehead and I chatted on the phone last night. Yesterday she saw Miss Kitty in a wheelchair. She seemed down. I do not know the details but I have seen this pattern. This is often the first step towards a decline from which she cannot recover. I am keeping Miss Kitty in my prayers.

I abhor Alzheimer's. In many ways, I look at this as one of the worst diseases out...even more than some of the advanced cancers. Our cancer treatment has gotten better and seems to double in efficiency every 10 years. Yet I see no practical treatment, cure, or prevention for this condition that robs a person of their very soul and identity over a long time. It is frightening to watch a loved one go through this and even more maddening knowing you might be genetically targeted for this condition (as Mrs. Bobblehead might be).

Come on, Jersey Girl. Bounce back...

[posted by Bobblehead]

Alright, I get it!

It is really a funny thing. When I felt like crap, I wrote. Now that I am really feeling a lot better (great, actually) I have not been writing. On top of that, I was out of the state for a month and basically had no internet service (yet I survived!).

What was funny was that people I knew would come up to me and ask where were my new blog posts. I started to get emails from people in my past who were following my posts without me knowing it. Even more amazing to me were the emails from fellow bloggers, many of them migraine sufferers, asking where I was.

Well, I am back, baby!

I was talking to my wife, Li, and I realized that I did most of my posting in the wee hours of the morning. Having insomnia will do that. Now I am actually sleeping great. To boot, I have been getting up at 5am each morning (groan) and alternating walking the big boys and catching the 6am bus and going to the gym.

I am back at the gym! Hot damn! I am a little sore and am not lifting the weights I was but I am back. I broke down and rented a locker and now just keep some clothes and other stuff there. I shower and shave before I catch the bus so I am basically done after I work out (since I lost weight, I rarely perspire so even after a workout I am smelling fairly fresh. Fresh...not ripe).

In June we packed up the 4 of us, 4 dogs, 3 cats, 5 kittens, and 4 birds, and drove the 850 miles to Tomball, Texas. A few days there and then we drove to Jacksonville, Florida. I drove almost the entire way. Almost no Bobblyheaded moments. A few (one below), but not bad.

Medically, I am convinced I know what is finally going on. After arguing back and forth with neurologists, I convinced them that my daily hypoglycemia was a trigger for my Basilary Migraines. Sugar dropped below 60 and WHAM. Get it down around 50 and I was a loser for the entire day.

My endocrinologist at UNM has me on Proglycem, a medication to limit insulin production. It took about 6 weeks to fully kick in but when it did, I was almost perfect overnight. My sugar has been reasonable and even went over 100 after a glass of wine! Booyah! My fasting is now in the 70s to low 80s (occasionally it still is in the high 60s) but I do not have the reactive hypoglycemia with the medication. Before, my blood sugar would drop after I ate. Now it remains stable and actually rises appropriately. I am thrilled. Proglycem is an oral suspension. In other words, the medicine is mixed with water. I take a one mL eye dropper in the morning each and every morning and I am fine.

If I miss a dose...well, I did miss a dose in Lubbock, Texas. We were on the road and I did not take the medicine out of my bag and just plain forgot to take it. I had my complimentary crappy continental breakfast at our hotel and...then...I..I started to to to sloooow down. Bobble, bobble. It hit fast. I crammed honey and peanut butter down myself quickly to try to get my sugar up. In an hour I was fine and we made it the rest of the way to just outside of Houston. Missing one dose, just one day, killed me. I ran into a similar problem the next week. I was at the end of my bottle. The last dropper I took was basically all water, no drug was suspended. Bobblehead engines, engage! I cannot miss a dose.

I walked all through Disneyworld, hauled cow manure, walked my cousin's dog each morning, did yard work, went swimming, worked out in the gym, partied like it was 1899, and went went went. I did need the cane from time to time but the Bobblehead side of me remained pretty much suppressed.

I am now back in New Mexico, in the wonderful Atomic City. The family is still back in Texas but they will be coming home before school starts.

There is a storm rolling in. I am getting lightheaded. (I never said I was 100%). Damn low barometric pressure. Will try some feverfew before drugs.

There is a lot going on. I will try to write a little every day or two. I do miss it. My personality has always been that if I stopped something, even something I enjoyed, I would have a hard time getting back into the swing. Well, I am going to try.

As for all of you who have supported me when things were bleak and asked where I was when things got better, thank you. Can you feel the love?

[posted by Bobblehead]

My Cat Ate My Blog

I read somewhere that a sure-fire way to kill a blog is to write about your cat. Well, here goes.

My cat, Spooks, eats anything and everything. A few months back when I was not sleeping well, I would get up in the early morning, put on my iPod with my Bose noise-canceling headphones (absolutely great for airplane travel) and write. Well, Spooks ate the cord to the headphones and I had to order a new one.

Now he ate the power cord to my laptop. It actually shorted out the cord. I can see where it is burned. Good thing he did not get killed, fry the laptop, or burn the house down. That was my spare cord, too. Now I have no way to power the laptop. I ordered a few cords on eBay but for now I am stuck without my clipart collection and my editor of choice, Ecto. Oh well, at least I am writing.

The good news is that I am very, very tired and I hurt all over. Why? Because I have been walking quite a bit and have been weightlifting, again, back in the gym. I am out of shape compared to where I was but it is good to be back on the trail, again.

[Bobblehead]

May Headache Blog Carnival - Migraines & Exercise: How do you stay active?

Welcome to the May 12, 2008, edition of Headache & Migraine Disease Blog Carnival. The theme of this month's carnival is Migraines & Exercise: How do you stay active?

Ellen Schnakenberg presents Moving and exercising and migraine - WEGO Health posted at Ellen Schnakenberg's Posts - WEGO Health, saying, "Think you can't exercise with Migraine, headache or pain? Written by a 30 yr Migraineur and ex-personal trainer, this article helps you get started with 'baby bites', and by changing how you think about exercise and moving."

James Cottrill presents Exercise and Migraine: 5 top tips for staying active posted at Headache and Migraine News Blog.

Diana Lee presents Exercise: Double-Edged Sword for Migraineurs posted at Somebody Heal Me by Diana Lee.

Kerrie Smyres presents Mindfulness & Meditation: An Introduction | The Daily Headache posted at Daily Headache, saying, "It's mental exercise at least. That's all my head allows these days."

Pat E presents Keeping Active When Your Body Says No posted at The MAV Experience

Teri Robert presents 10 Ways for Migraineurs To Sneak In Some Exercise> posted at Teri Robert's Share Posts: My Migraine Connection, saying, "Here, you'll find some ways to sneak in a bit of exercise... some simple exercises that we'll be able to manage even on some of the days we're in pain. They may not seem like much, but the effects of them will build up."

Rena Sherwood presents Walking Dog Helps Ease My Head Pain.

Megan Oltman presents Calming down the migraine brain posted at Free my Brain from Migraine Pain, saying, "Although I didn't write directly about exercise, walking is my biggest form of exercise, and one of the relaxation techniques I wrote about involves walking."

MaxJerz presents coming out of the (migraine) closet: a borrowed subject posted at rhymes with migraine, saying, "A post about trying to live openly with migraine disease."

Rosalind Joffe presents Conserving Your Energy: Making It Sexy to be Green

Rain Gem presents Migraine News Network | RainGem |: I can has "I is Legend", srsly posted at RainGem - Migraine News. Threatments, Research and Opinions.

That concludes this edition. Submit your blog article to the June 2008 edition of the Headache & Migraine Disease Blog Carnival using our carnival submission form or by sending entries directly to Diana by e-mail.

Past posts and future hosts can be found on our blog carnival index page

Subscribe to the Somebody Heal Me feed: Subscribe in a reader or subscribe by e-mail.

On a personal note, I wanted to thank Dianna for letting this edition of the Headache and Migraine Blog Carnival to be hosted by Atomic City. This is a great way to digest a lot of information in one place.

[Bobblehead]

Fiasco With Doctor at University of New Mexico Hospital

The noise, noise, noise, NOISE!

Ah, the joys of living in a small state with a limited number of doctors for the population.

I have been having almost daily attacks. The constant trigger in my life that I can see is my hypoglycemia. My food diary shows no other clear-cut triggers. It was my almost daily cycle that had one asshat neurologist tell me that I was a hypochondriac and that I was not having any migraine events at all.

For a while the Depokote seemed to be working. Along with that I do take Magnesium and Feverfew. Voltarin is my rescue drug.

This past few weeks, however, have been really, really bad. I collapsed once at work. Another day, I went home to sleep. My wife took me to the physical therapist. When I got in I collapsed in the lobby. After I recovered some, I found that my PT (whom I adore) had called my neurologist in the Cleveland Clinic. He was on the phone with me in minutes. He suggested a possible infusion to help break the cycle. He also suggested altering my medications a bit. He asked if I could come on in and see him in the next week. Cleveland is on the other end of the country from the Atomic City. Yet here he was scheduling me ASAP.

I told him I would prefer to see my local neurologist at the University of New Mexico Hospital which is only 90 miles away. I gave him the name of my local doctor (who seemed competent but I have only seen her once). He said he would call her. He did. Several times over the next week. He emailed me and said he never did reach her.

I called UNM the next day for an appointment. The earliest they could get me in was July. I booked it. After a few days of feeling like crap I called back in. The scheduled me for August. I whined and protested. I told them (begged them) that I would be at UNM to see my endocrinologist in 2 weeks, could I see my neuro on that date. They scheduled me for a date very early, even earlier than with my endocrinologist.

That was a double-edged sword, both good and bad. UNM did bend over backwards to get me in (after asking what I should do since passing out was getting old). The good news was I was actually getting in within a week.

The bad news is that they picked the worst possible day to do it. I accepted anyway.

This last week I have been a single father. My wife, Li, has been in Louisiana working with a mission's group putting together aid packets for natural disasters. I was watching the girls. On Friday, the day of my UNM appointment, I had to leave very early to get to Albuquerque by 9am for my appointment. I would not be able to get my kids off to school. They were on their own (they did fine...I have good girls).

On top of that, I would now miss my daughter's orchestra concert. She ended up performing with neither parent there to applaud her hard work. And she did work hard.

I got to UNM on time for my 9am appointment. The receptionist, a pleasant young lady, informed me that my appointment was moved to 10am. No one notified me. I could have gotten the girls off to school.

I wandered around a bit and was back at 10. Workers were in redesigning the modular furniture of the reception area. Here I was in full blow basilar migraine attack (Full Bobblehead Engines!) and there was the hammering, drilling, banging, movement, yelling, noise. I felt like the Grinch. Finally, I got up and went in and asked to sit in an exam room. Again, the receptionists and the nursing staff were great. They quickly triaged me and had me wait.

After an hour I was still waiting. My doctor was no where to be found. They paged her. No reply. After a while they told me they found here. She was home with a sick child. I waited for another doctor. Finally at 11:55 (I got there by 9am) he came in. The first thing out of his mouth was, "I did not have time to look at your chart. Also I need to be somewhere at noon. You got 5 minutes. Go."

I was not a happy camper.

He recommended I increase my Depakote, get a kidney test (which I had already done) and bye-bye! I went to rebook with my original neurologist. UNM had gracefully canceled my July appointment (again without calling me) and now had an opening in September.

No good.

I went back in, sat down with the nurse, and slowly in my slurred speech explained I was passing out, having almost daily attacks, was up since 5am, drove 100 miles alone to get here, could not get my kids off to school, missed my daughter's concert, sat in the construction zone, had a 5 minute drive-by consult by a doctor who wanted to brush me off and get to lunch, had numerous appointments moved or canceled with no one calling me, and now was on a priority list to see my doctor (whom I desperately want to get some sort of professional relationship going with) 4 months later!

The nurse was speechless. I was polite, quiet, reasonable, and professional. I was angry at no one. Crap happens. My doctor's kids get sick. That happens. I am okay with that. I just want to get in. And I want my doctor to speak to my neurologist in Cleveland so they can agree on a treatment.

I go back in to UNM in 2 weeks.

LESSON OF THE DAY Keep pushing. Be polite but firm. You guide your own treatment. Do not accept the brush-off. Murphey's Law sometimes comes into play, and doctor's offices are organized chaos. Everyone feels bad. Everyone is cranky. You can often force the issue but remain calm and professional. Go to the nurses. Do not give up.

The good news is that I felt great yesterday and am now off to the gym today. Happy Mother's Day all!

Bobblehead

Can A Hacked Web Site Cause A Person Physical Harm?

Yes, if it can trigger migraines and seizures.

A few days ago, someone hacked into the web site of the Epilepsy Foundation. There they posted lots of nice blinking and flashing images, perfect for causing seizures. Of course, us migrainers were not left out of the picture. Flashing lights can trigger migraines as well (as Bobblehead is all too aware of).

The full story is at CNET.

How to kill a blog...stop posting

No, Atomic City is not dead. Bobblehead has just felt like death. I ran into a number of people I know who all were concerned. "Hey, you stopped posting? How do you feel? Uh, you look TERRIBLE." The good news is that at least I know that SOMEONE is reading this blog. The bad news is that I have been really feeling poorly.

My hypoglycemia is driving me nuts. Ironically, just when I thought it could not get worse out of the blue my sugar has stabilized. Beats me why. I also gained 10 pounds (not wanted). Maybe the two are related. I am up to 186, the highest I have been in years. My wife would be thrilled. I am pissed. I want to get back down to 175.

My head is also spinning. I have collapsed twice in the past month. Once at work and once at physical therapy.

I am convinced a trigger for me is low blood glucose. And since I go low almost every day, I get an attack every day. In the evenings I have been dragging myself home and have just been too tired to write.

To top it off, the power cord on my laptop went out. No way to work the machine for now. Am ordering new cords. But for now I am stuck in the corner with my wife's iMac. A good machine, just not set up in a way that promotes writing for me.

This is truly the whining hour!

The good news is that on Monday Atomic City will host the May Migraine BlogCarnival. Okay, off to some decent writing!

Bobblehead

Bobblehead Stuck Between Low Blood Glucose and Basilar Type Migraines

Hypoglycemia Serves, and BAM Down Goes Bobblehead!

The Proglycem does not appear to be working...

I am stuck in a bad cause and effect loop that I am having a hard time getting out of. My fasting blood glucose levels are ok (low 70s), sometimes a tad low. I have a dose of Proglycem suspension (an insulin suppressor) to try to keep my glucose levels up after I eat. Does not work. After a morning smoothie (whey protein powder, fresh fruit, Splenda, a little milk, fiber, bee pollen) my glucose drop to the 50s. Later in the morning I often will have more to eat (eggs, toast, etc.) No luck. my sugar is gone.

I often can deal with the low blood sugar. Yes, I am jittery and moody but I can eat or drink juice, honey, glucose tablets, etc., to get my sugar back up.

However, I am clearly aware low glucose is a trigger for my basilar type migraines (I also like the name basilar artery migraines. While this name is no longer used much, the acronym BAM is quite appropriate!). And that can wipe me out for much of the day.

Oh, credit where it is due. Teri Robert's site has a great article on basilar type migraines. I would read it aloud to you but my speech is often too slurred to make it out.

Like Monday. I fell to my knees while getting out of my office chair. And then a bit later I collapsed while speaking to several colleagues. While I agree that event was more entertaining than what normally happens at the office, my colleagues were not too happy! I got propped back in my chair. I was handed a juice box in one hand and a container of peanut butter in the other. All I needed was a stuffy and a blanky and I was ready for a nap!

The day was spent with sunglasses on and a fog in my head, and a buzzing in my ears.

This pattern of hypoglycemia and migraine is almost daily. The neurologist who dismissed my migraines earlier on did so stating that my pattern of migraines is too regular and almost daily. "Migraines do not do that."

However, I have two built in triggers. My ear (with the vertigo) can and does trigger attacks. They seem more manageable. But the trigger of low blood sugar is a problem. My glucose drops almost daily to low levels (mid to low 50s). The drug I am taking does not seem to be slowing that down. Unless I stop eating completely, my never-ending game of tennis has me worried...

[posted by Bobblehead]