Wednesday, February 27, 2008

Air Pressure, Inner Ear Damage, & Migraines...need advice

Bobblehead hates storms now

Okay, I need help. If I can identify the major two triggers of my migraine attacks they would be fatigue and low pressure systems. I am working on the fatigue (I actually have been sleeping fairly well this week) so that does not overly concern me. However, the Atomic City is over 7,000 feet above sea level in altitude. We have lower pressure as is. When a storm comes through the Bobblehead bobbles out of control. A damaged middle-ear and low pressure do not go together well. And I have no doubt that setting my ear off triggers the migraines which makes me a grumpy Bobblehead which in turn makes the Bobblehead's loving family start thinking of ways of hiding his body.... A colleague and pilot told me of the Valsalva Manuever and I tried it during this last rain storm. It did make my dizziness go away for a few minutes but overall, zilch. I know, whine whine whine whine. I have been taking some homeopathic migraine abortives, with great success I might add. GelStat Migraine (a mixture of feverfew and ginger you put under your tongue) works a good 40% of the time. The other 60% I either take nothing (rebound headaches scare me) or my normal abortive. What I am looking for is a preventive for days I know a low pressure system is coming. Or a non-pharmaceutical abortive during a storm. I know, I might be shooting for the moon. Anyhow, if you have anything that works, please leave a comment. If you want the Bobblehead to stop whining, also leave a comment. I will continue to whine but I will feel better allowing you to let off some steam... Many thanks.

[posted by Bobblehead]

Blogging Against Disabilsm: Diary of a Goldfish

I thoroughly enjoy the Diary of a Goldfish Blog.
I am not sure how I found this blog. Heaven knows I was not looking for it. I am sure it was a link embedded in another link I found embedded in yet another page I saw on a search. At first I dismissed the blog because it did not immediately address the topic I was looking into. But I kept the page open yet minimized on my computer. After I was done posting to Atomic City I started to clean up my desktop. I remember going to the window and looking over the words before I closed it and moved on.
I didn't move on.
What I saw was an online journal and thought provoking blog from England that was intelligent, not self serving, and having a good underhanded sense of humor. The author is disabled and while that is obviously pivotal in physical life, does not seem to define the author.
I enjoy this blog and keep a close eye on my blog roll and aggregator when new posts occur. I usually do not jump to the posts as they are too good to scan and move on. I prefer to read them slowly and savor them.
The Diary of a Goldfish can be found at Yup, bookmark it (or subscribe). Take your time. It shows how the blogosphere can really have gems amongst the lumps of coal!

[posted by Bobblehead]

Humor and Alzheimer's...Yes, they can go together

Bobblehead's Beloved Mother-in-Law & Friends

My mother-in-law has been slipping away from us. She is there in body but the wonderful person who made her essence, her very soul, seems to be slowly dissolving before our eyes. Alzheimer's is a horrible condition and in many ways it affects the family and caregivers in as devastating a manner as the patient. What I saw with my MIL was that while she was aware something was amiss, she never appeared openly frightened or even concerned over the matter. What did affect her earlier on was seeing that the family was in conflict around her.
An event happened a few years back that still cracks me up to this day. No, I am not laughing at her state. If anything this event taught me that even as she degrades, every now and then a part of her shines through like a lighthouse during a storm. I cling to those moments.
First, a little background.
My father-in-law is a retired preacher. Each and every Sunday he would get in front of the congregation and offer leadership and sermon. Naturally, he wore a suit and tie on a regular basis. As happens after one retires and gets older (he is now 80) he cut back on some of the particulars that are burdensome. He has traded his traditional ties for clip-ons. And since he no longer actually ties ties on a regular basis, he has to challenge himself to remember exactly how to tie one when the rare need occurs. My FIL's state of mind is still as sharp as a tack and he has done the best he could to care for his bride of 50+ years.
A few years back, when we all could see my MIL acting, well, different we finally were able to convince my FIL (who is just a bit stubborn) to take her to a doctor. My wife and kids and I were in for the winter holiday break and getting in to see a doctor was difficult to time at the last moment. We chose a geriatric specialist (who ended up being a complete jackass...but that is for another post).
We sat in the waiting room. Behind my in-laws was a poster giving examples of occurrences that might tip off family members to the beginning signs of Alzheimer's. Giving up things once loved, no longer enjoying company of friends and loved ones, etc. The poster clearly said that any one of these by itself was not a sign...look for a pattern. What caught all of our eyes was that the messages were shown in very clear pictures as opposed to words. By the way, here is a good list of beginning symptoms of Alzheimer's.
My MIL focused in on the picture of an elderly man clearly forgetting how to tie his tie and needing help.
With fire in her eye she turned on her husband and snapped, “You think I have lost my mind yet you are the one who can't tie his own tie. Maybe you should see this doctor.”
We cracked up. Score one for my MIL.
Bless her.

[posted by Bobblehead]

Sunday, February 24, 2008

Minding Our Elders

I found this blog, Minding Our Elders, while looking for articles on Alzheimer's. The blog is maintained by Carol Bradley Bursack and I find it to be a treasure chest of information. It quickly is becoming my favorite site for Elder Care information. If you have elderly relatives and are a caregiver, go see her site NOW! I wrote Carol about the frustration in care giving for my wonderful mother-in-law. She wrote me back and told of a worse horror story about a relative of hers. With people living longer, elder care is becoming a critical issue. On top of that, many people (like the Bobblehead) live far distances from their parents. Both my parents and in-laws all live in Texas (but no where close to each other in Texas). The Bobblehead lives in The Land of Enchantment. My situation is a common one. How do I properly care for my children and wife while at the same time try to provide or prepare to provide care for 4 elderly parents and in-laws? It is rough. Minding Our Elders is a must, must read. Carol also has a book on Elder Care. Mine is on order.“Minding Our Elders: Caregivers Share Their Personal Stories” (Carol Bradley Bursack)

Thank you, Carol.

[posted by Bobblehead]

Medical Records Bobblehead Style

Nope, nothing in there...

Bobblehead keeps everything although it is always easy. It helps to be organized. The most important thing I keep is a copy of all of my test results. Every lab that I run results in my going to the local hospital and grabbing a copy of the test results. I keep the most recent results in a three-ring binder. I also make photocopies of important tests so that I can easily give copies to new doctors. So, my recent evaluation at the Cleveland Clinic was in hand when I went to the University of New Mexico last week. My new neurologist had a copy in her hand for her to keep. Likewise, when she started to ask about blood work, I had those ready as well. I keep my tests in order based upon the type of test (blood, physical exam, radiology) and then by descending date (most recent first). This way it is easy to find what I am looking for. I also start, highlight, write, circle, underline, etc. all of the test to point out important data. Many doctors are time crunched and anything I can do to bring their eyes to important parts of the test will be completed early. I also point out past results on recent tests. For example, after a case of necrosis from IV Compazine my liver panel went nuts. I was taken off of most medications until the levels went back down. On the test results I made clear notes on what was going on. So, where my liver panel shot up I wrote that I had Compazine 5 days earlier. Then as my panel peaked and started to return to normal I also jotted down what the numbers were on the prior test. This way any doctor could view a single test and yet still get a sense on how my numbers changed over time. If I fax tests in to a new doctor or hospital, I write my patient ID Number on the bottom of each page. Again, in case the papers are dropped, the chance that these results will still end up in the correct file are higher. I also scan each document and store them as PDF files. These files are stored both on my home computer and also password protected on my Internet file space. Again the idea that I can get the information I need to doctors no matter where I am. In addition to test results I also have copies of each of my surgery reports. Most surgeons hate patients having copies of these reports. There is a fear you may use them against the surgeons or hospital in a law suit (which is always the case). However, you have a clear legal “right” to those files. They are yours. Personally, I found them to be fascinating reading, especially my Duodenal Switch report. However, because of my altered anatomy, I keep a copy in case there is a need to present the information to a new doctor that might need to diagnose or operate on me. Trends in data are often more important than the actual data. My liver panel peaked and then started to return to normal. I had a sheet comparing all the results over time. Likewise, tracking my Blood Pressure (Bobblehead uses Blood Pressure Tracker), Hemoglobin, Urine Protein, etc., over time is a great tool for doctors. My main tool is a cheap paper diary and a spreadsheet program if the data is graphable. K.I.S.S. The bottom line is you cannot nor should not rely on the medical establishment to properly and promptly move your files around for you in a time of need. It takes a little planning but the tools you need to arm your medical staff with accurate and up-to-the minute data is cheap and easy to do. Get started.

[posted by Bobblehead]

Saturday, February 23, 2008

Weird Al Yankovic and Migraines


I have been fairly stressed following a difficult week and a half. Between flying to Florida for my uncle's funeral, lack of overall sleep, and a large event that I proctored at work, I am pretty much beat. On top of everything my headaches have been plaguing me. Blurred vision in the evenings has returned. There is no doubt in my mind that much of this is simple fatigue taking its toll. I really need sleep. Luckily I slept well last night (Friday). I was up around 7ish, made some coffee, upload a photograph for a future blog posting, and was getting to write about Alzheimer's when my younger daughter El came into the living room. She has my same sarcastic and underhanded sense of humor and we both like watching strange and often hilarious videos on the web. Naturally, I try to screen out filth. Yet I am not beyond pure twisted humor. So when El asked me to find some videos of Weird Al Yankovic I immediately hit search in YouTube. We laughed so hard I couldn't breathe. Come'on! I mean, this guy is downright sick. Whether he portraying a Gangsta Amish guy, a rapping nerd, singing about crap on Ebay, or belting out a polka with accordions and tubas in full flare while singing, “Doncha wish your girlfriend was hot like me,” Weird Al shares the Bobblehead's slightly off kilter humor. A huge number of videos later my migraine was gone and my daughter was wiping tears of laughter from her face. Cool.

[posted by Bobblehead]

Wednesday, February 20, 2008

Under (Blood) Pressure

Did the Coyote have hypertension?

Bobblehead has high blood pressure. I cannot shake it. My family has a history of kidney problems and heaven knows I had severe kidneys problems when I was 300+ pounds before my weight loss surgery. Today I still “spill” a little protein in my urine and I cannot get my BP under 120/70. I saw my nephrologist of many years Monday in Albuquerque. She is thrilled I am down so much in my weight. We compared Century Bike Riding stories and griped about health care in general. She is great.

My BP is not that runs around 130-135/80-100. That is most likely due to the damage my kidneys suffered earlier. Kidneys do not heal well. Screw them up and they remain screwed for life. My weight is good, I drink a lot of water, keep fit, try to keep my sodium down, yadda yadda. No go. I will increase my BP meds up a tad to try to keep it in check. The good news is that BP medicine, Diovan, is also a documented migraine preventative.

By the way, I love this Of course, I am a geek...

[posted by Bobblehead]

Tuesday, February 19, 2008

Alzheimer's Research Target May Be a Dead End

Plaques Tanglesborder Amyloid Plaques

Articles like this are two-edged swords. From

Alzheimer's Research Target May Be a Dead End: By E.J. Mundell HealthDay Reporter Sunday, Jan. 27, 2008; 3:00 PM Copyright © 2008 ScoutNews, LLC. All rights reserved. SUNDAY, Jan. 27 (HealthDay News) -- A once-promising pathway for research into preventing and treating Alzheimer's disease may have been derailed by a surprise chemical finding, researchers report. Scientists in laboratories around the world have been investigating drug candidates called amyloid inhibitors, which many experts believed could keep proteins such as amyloid-beta from sticking together in brain tissue. This type of “sticky” protein plaque build-up is a hallmark of Alzheimer's disease. It also characterizes brain illnesses such as Huntington's disease and “mad cow” disease. But the new study, published Jan. 27 in the journal Nature Chemical Biology, may sound an unexpected death knell for amyloid inhibitor research. In the study, a team of chemists at the University of California, San Francisco, found that these candidate drugs form large, unwieldy clumps themselves, rendering them useless as targeted therapy against amyloid in the brain. [...snip...]

Basically, the thought was that Alzheimer's is brought on by proteins called amyloids that form large clumps within the brain called plaques. These plaques aggregate around nerve pathways and essentially clog down all functions. The plaques are very small and since are made of similar proteins as naturally found in the brain do not show up on MRIs and other imaging techniques. Various theories are bouncing around but the predominant one is that this is natural and that if we were to live long enough, eventually these plaques would affect all of us. Not a pleasant thought. Researchers are naturally asking the right questions. What if they came up with a chemical that locked up the amyloids before they could form plaques. “Amyloid inhibitor” research has been in the forefront on the war against Alzheimer's. While not a vaccine approach, a true working amyloid inhibitor could be taken on a regular basis after a patient hits, say, 40 or 50 years old. This would not prevent the root cause of Alzheimer's (amyloid production) but rather prevent the formation of plaques. No plaques, no Alzheimer's. There is a problem... The anti-amyloid chemicals stick together and clump. Think of each molecule as a long strip of scotch tape. And then the strips sticking together and eventually forming balls of tape, or in this case, balls of drug. Then, just as in the tape, the balls will stick to everything making them useless. To make matters worse, since they clump, they cannot even get through the membranes of the brain to reach the amyloids. This example shows a classical problem as one tries to scale a chemical experiment up from a beaker into a complex biological solution. Our bodies are extremely complex chemically and physiologically. To make matters worse, drugs need survive being introduced into the body. They must be able to either be ingested or injected, travel to the targeted areas, and only affect what we want them to. In most cases, this is not purely so. That is why drugs have side effects. They target more than just what we want them to. So, all is lost in this research area, right? Well, not for certain. The article does continue and say that several prominent researchers are saying that further pursuit in this area is a waste of time. They reason that the drug-clummping problem is just too fundamental to solve and that time and energy pursuing this avenue will take away from other solutions not yet studied in earnest. I have to personally question if the nay-sayers are really speaking from a “pure” sense of scientific reason or are they trying to get research $$$ in other avenues. Scientists crack me up, I know, I am one. However, they may be right. This is a very difficult problem. Clumping of biological-type molecules is common and very difficult to solve. To be effective:

  • the drug must not clump
  • must be stable on the shelf
  • must survive injection or ingestion
  • pass through the membrane
  • be in high enough quantities to be stabilize large amounts of amyloid
  • not clump to anything else
  • then allow the captured amyloids to pass back out of the brain
  • be ejected from the body or be destroyed elsewhere in the body (usually the liver)

Sounds daunting but is theoretically possible. The good news is that at least we know what we need to do if this should evolve into a treatment. Alzheimer's is quickly becoming one of the most researched diseases and with good cause. It is horrible. I know. I am watching my beloved mother-in-law disappear before our eyes and it breaks my heart. The effect on her and those around her (her husband of 50+ years, my wife and children, her friends and other relatives) is almost unspeakable. And with an overall aging population due to improvements in heart and cancer care and the Baby Boomers coming of age, this disease is set to cripple the population. Get moving, researchers.

[posted by Bobblehead]

Sunday, February 17, 2008

This Week's Poll: Supplements and Migraines

This Week's Poll? Do You Use Supplements to Prevent Migraines?

Neurological Conditions and Embarrasing Your Kids

A common discussion around the Bobblehead

I stayed pretty alert on the trip. It was very strenous, though. Lot's of deadlines (the planes, the funeral, etc.) I did all of the driving which in itself was amazing. I did get a little loopy, especially before take off from the Albuquerque Sunport. Heaven knows TSA does not make things easy for anyone, it is getting even harder for those who cannot stand well. It was murder when I was in the wheelchair. This time around, I went through with one bag and my cane. Off with my shoes, my belt, my ID tag. My cane (aluminum) was x-rayed. By the time I was through I was through in another way. After we got on the plane, El and Li sat one row ahead of Cl and myself. I was almost in full Bobblehead Loopy Dizzy Basilar-Type Migraine Mode. Which also means I become a loud talker and a close talker. The guy next to me on the plane looked mortified and wandered off to scavenge an empty seat. As more passengers boarded the plane he got chased from seat to seat. Cl and I were hysterical and we were hoping he would get stuck next to me the entire flight. I was already planning my attack, “Hi. Uh-uh-I ammm uh Bobblehead and-dd-dd aye hu-hu-hate too fffffly. Who argh yu-yu-you?” Unfortunately the plane had a few empty seats and he hid a few rows behind us. My migraine did better but let me tell you that inner ear problems and large aircraft do not go together.

Would you recommend weight loss surgery?

That is the question posed at DB' Medical Rants:

Yesterday I did something that I rarely do - I recommended bariatric surgery.
What criteria do you use for bariatric referral? I do not remember that last time I had this particular conversation.

I have a similar question. If you have had weight loss surgery and are at least 2+ years out, would you do it in hindsight? The 2+ years is to allow for fading of the “honeymoon” phase.
As for the Bobblehead, yes, I would. Life has not been a picnic, of course.

[posted by Bobblehead]

Back On The Air

Please Stand By...

I made it back from Florida. The trip was very difficult. My uncle was a wonderful man. He was not famous, successful as a business man, rich, powerful, influental...what he was was a Mensch. He was an overall good person. Very, very funny. He would give you the shirt off of his back and the shoes on his feet. Literally.
The trip was a typical Bobblehead other words totally chaotic. I will blog more about it soon. I have written some in my personal journal. Much is really not for this site. Way too personal (a lot of family Angst) and not really interesting if you do not know the players involved.
It is good to be back and I hope to get more blogged this week. At least two entries every three days is my goal, if not more. Like I wrote in the first post, I am doing this more for me this time around. If you come along for the journey, that is great.
Again, thanks for your thoughts and prayers and it is good to be back.

[posted by Bobblehead]

Tuesday, February 12, 2008

My Godfather and Uncle has died

Ed and the Bobblehead

I got word yesterday that my uncle Ed had passed away suddenly. This is a shock to all and Atomic City will be off the air for a few days. He was Peter Pan in real life. The reality of this has not yet sunk in. A very big peace of my soul is gone. Ed was pure love and joy. Words alone cannot express how I and my daughters and wife feel.
I tell people it is not how long we live that is important. Sure, easier said than done. But Ed truly showed that. It was easy to get annoyed at Ed but impossible to stay angry at him.
God speed. We will miss you. Try to stay out of trouble, will you?

[posted by Bobblehead]

Sunday, February 10, 2008

Wheelchair Dancer

Beautiful Soul

What can I say, I really want to meet her. I found her blog by accident this morning and immediately was intrigued. It is not Bobblehead's intent to only spotlight blogs from people with medical issues. Heck, we are all nuts and screwed up somehow so we all fit.
The Wheelchair Dancer's Blog is downright beautiful. Besides a look into a disabled-athlete's world (yes, you can be both, and yes, I have no doubt a professional dancer is both artist and athlete) you get a peek into a fascinating soul.
Now that I am walking, again, I still have serious doubts on my abilities to run, bike, lift weights, skate, etc. Yet I must have a goal and the knowledge that I can still achieve greatness in physical form and motion.
Visit the Dancer. You will not regret it.

[posted by Bobblehead]

Wheelchair Mama

I found this blog while looking for other entries on wheelchairs. I have not looked back too far into her posting to see why she is in a wheelchair. What I do see is a strong women with deep faith and a good attitude. Spirituality is important to me...more than actual religion.
I like here blog and will keep peeking in.
Wheelchair Mama's Blog

[posted by Bobblehead]

Am I disabled?

Wheelchair Racer Bobblehead Thrusters engage! (Image courtesy of Strategy is for Imbeciles, ©2007)

There is no doubt in my mind when my condition was at its worst that yes I was disabled. But now? My ego says no. But the reality might be something else. My balance is still not 100%. My mind still wanders when I get fatigued. I was light-headed and dizzy most of Saturday. I did drive to town and back (about 11 miles each way. Any easy ride). I made it fine but I was very apprehensive. I do not like standing on one spot. As much as the City on the Hill has done a great job getting busses running, there are no benches at the bus stops. I was stuck waiting almost an hour after my PT session. The downtown bus I was on let me stay on in the warmth as he made another cycle. I was glad, not that I was worried about standing out in the cold. It was the standing that worried me. Walking seems to be okay. All that said, I spent some time yesterday looking at recumbent bikes on the web. I have no desire to do another Triathlon but am itching to do a Century. I might be thinking too big. And even if I am, would a recumbent compensate for a Loopy. Dizzy Bobblehead? Easy on the neck and back, lower center of gravity. Do I look into a trike? They are heavier and the hills here are killers. How can I consider myself disabled and yet still be contemplating 100 miles on a bicycle in one sitting? I also saw how I went from being not just able-bodied but down-right athletic into a stuttering, slurring, swaying, green-faced, bone-white fingered, passing-out, Bobblehead, confused, dizzy, imbalanced, passenger, wheelchair bound, angst-filled person in 6 weeks. It happened once, could it happen again? I know it could and fear that person is lying in wait just below the surface. That said, even at my worst I was still producing good work. It was amazing (and frustrating) to see people who knew and respected me really stop and slow down in order to hear what I had to say, even though my stuttering and slurring of words were agonizing to listen to. The number of people who were praying for me and respecting me for who I was inside (they know I am one stubborn SOB and do not give up once I set my mind to something) was staggering. And when I said, “I think we should consider...” they listened and considered, even if it sounded like, “Ahh de-de-denk ee uh-ud consiida...” Amazing. Of course, it was also strange to see people who had never seen me before. Almost all were friendly, some were curious. A few were angry at me (or it appeared that way). On a one to one basis almost everyone was accommodating, sometimes to the point where it was frustrating. But in my months in the chair there was only one guy (at an airport...another post) that royally pissed me off. I always felt treated as a person. Of course I only spent months in the chair, not years. As for infrastructure...that is another story. I am STILL fighting with my employer over something inane and the lawyers chimed in with something very frustrating. More later. Stairs, sidewalks covered in snow, ramps that all too steep, doors that will not open, buses with ramps that do not work, broken elevators, don't get me started over public restrooms, customer service counters set so high I cannot see anyone. You would think that by 2008 many of these would not be issues, especially in facilities built in the last 15 years. Yet there is a common theme of non-thinking in the design and adaption of these locations. I am not an engineer or an architect but I often can see quick, cheap, often FREE fixes and they are not built in. Amazing. Even at my worst, I was able to get out of the chair and walk. I needed a cane or an arm to hold. I could push my chair and use it like a walker. I was well off. But what if I were completely unable to walk? My town seems pretty good ADA-wise and I had a terrible time getting around. The thought of a person that could not walk was daunting. Back to the original question, am I disabled. My head is starting to fog up and I become a little dizzy just writing this entry. I would not want to drive anywhere just yet. It is cold out and I am making excuses not to go outside and play with my dogs. At least for now the answer is yes.

[posted by Bobblehead]

Friday, February 08, 2008

Wow, that was fast. ICE your phone

In my previous post I wrote briefly teasing about ICEing your cell phone. Add the contact ICE: In case of emergency. I have it and so do any number of colleagues and bicycling friends. Two minutes after I post I wander over to CNN and what do I see?

If You Get Hit By A Bus Tomorrow:
For the cell phone entries, Balduzzi once again recommends redundancy. Emergency workers know to look for “ICE” which stands for “In Case of Emergency.” An “AA” will keep the number at the top of your contacts list. “AA ICE” or “AA Emergency info” or “ICE spouse,” are all good ideas for cell phone entries.

But the cell phone isn't enough, King says. “When your car hits the tree at 50 mph, the cell phone goes flying,” she says. “The wallet you're sitting on is much more likely to still be there.”

Good article that satisfies even the most paranoid Bobblehead...

[posted by Bobblehead]

Medical ID Tags? Yes, but I am paranoid.

Products Fixx Original Who are you?

Courtney has a walk through her logic on Medical ID tags on her Ride to Remedy blog:

I pretty much refuse to wear the bracelet because I think it’s ugly and I don’t want some frou-frou bracelet on my wrist, that’s not who I am. Nor am I the type that wants to run around with the sports band on my wrist either. I like to be free of everything on my wrist with the exception of the occasional watch. [...] Whether or not it would’ve done something in an emergency situation is something I don’t know because in the one emergency situation I’ve been in, I wasn’t wearing my bracelet (it was safely stored in my jewelery box so that it didn’t get lost, it had been there for a couple years at this point). I had passed out while driving because my blood sugar had gone low. I don’t remember anything, I remember where I got in the car and started driving, and where I awoke with an IV in my arm and the paramedics trying to talk to me, but I remember nothing in between. They had only known I was diabetic because my blood glucose machine was sitting on the passenger’s seat next to me.

The Bobblehead is paranoid, always has been. It is part of my rigid way of coping in the world as being a Myers=Briggs ESTJ personality. I realized that when I was running a 5K a few years back I had no ID telling people of my gastric bypass surgery (as if the scar going from my groin to my sternum would not clue them in). I made one out of a key tag and ran the race. Later on I bought a sports tag and a dog tag. Both were very nice (I loved the dog tag).

Then, in October, the Bobbles started. My original trip to the ER had me slurring and spinning like a top. Stroke for sure...NOT! A few months later a fall out of the Hyperspeed Wheelchair Chariot (r) made me stop talking all together. Another black out in a new doctor's waiting room had 6 friendly but confused Santa Fe paramedics get to try out a whole bunch of equipment, even a machine that went PING.

I now have ID out the wazoo. My bike helmet (both pedal and motorcycle) have IDs (for FREE!) from I have a (not formal) interactive medical ID from RoadID. Their products for sports IDs are wonderful. My new dog tag is really cool.

Interactive ID? Just call the phone number on the tag, enter in the pin (also on the tag) and you get a complete profile: doctor's names, emergency contacts, medications, medical history, insurance information, zodiac sign, etc. I love it. Of course Basilary-Type Migraines are strange enough where I know most Emergency Responders will have no clue as to what they are. Also, I wanted to give me girls peace of mind that in case of an accident, they would not have to struggle to tell crews what I had or what drugs I was on. They just had to say that it was on my ID.

However, the ID is anything but fashionable so I hear Courtney loud and clear. Bobblehead may be paranoid but he must look mahhhvalous! If your condition is straight forward and well understood by responders (diabetic, hypertensive, etc.) any ID bracelet or neckless would do the trick on an ID card easy to find in a wallet or purse.

And, although not quite catching on here in the states, yet, ICEing your cell phone is gaining momentum in Britain. I gave a talk about ICE here and was surprised to find a number of my colleagues had already ICEed their cell phones. What is ICE? ICE is a topic for another blog post.

Courtney, my advice is get a cute but unobtrusive tag. Post a photo. Anything to make emergency crews a little faster or efficient help you out. But do not give up on fashion. My daughter El is all about fashion. As for the Bobblehead...I still think plaid and stripes go together....

[posted by Bobblehead]

Wednesday, February 06, 2008

Stuck in the insomnia cycle

Not the Bobblehead

When I was a little Bobblehead, I had a book (really, this is a true story!). This boy had a pet hamster, It got out of her cage and was free in the house. No one could find her but the family knew it was still around. The boy's mom suggested that he try to outwit the hamster, He read that hamsters were nocturnal creatures. He stayed up all night patiently when all of a sudden the hamster crept up and started to eat a snack he left out for her. He swept her up into his hands and everyone was happy, again. I have become like that stupid rodent only I ain't very happy about it! I am stuck in a terrible cycle and I really need to devote some energy in breaking it. I go to bed at a reasonable time. I fall asleep just fine. I stay asleep just fine and sleep deeply and well. Then I wake up at 3am. Or, if I am lucky, 4am. Every night the same thing. Insomnia has been driving my attacks of migraines and basilary-type migraines. Fatigue is a real problem for me. I always was a good sleeper, especially after I went on CPAP for my sleep apnea (almost nonexistent after my weight loss). There are two main categories of insomnia (no, I am too tired for a truly in depth posting so you get the Cliff Notes today). One is when you cannot fall asleep. That we all go through and that I can deal with (I write confidently since it is not hitting me just now!). The other is when you cannot stay asleep. I could take drugs. I do not want drugs. I look in amazement and horror at the ads of talking beavers (man, is that Freudian or what) and gently flying butterflies. Aww, cute. When you cannot sleep let's alter your brain's chemistry a bit. No problemo. I do take Melatonin and it helps, some. I know that since I have been going through this ordeal, my exercise level is down quite a bit. The lack of sleep drives my attacks and the attacks drive my lack of sleep. What a wonderfully dysfunctional cycle I am stuck in. Well, at least it gives me time to blog...

[posted by Bobblehead]

Monday, February 04, 2008

Social Networking For Diabetics

From Courtney's blog, Ride to Remedy

Social Networking For Diabetics

Before I delved into this entry, I had to do some researching to discover what the scope of social networking is, and I must say that I’m still not sure what exactly it is. It seems to me that the internet in it’s entirety is a space for social networking: blogs, forums, chat rooms, mySpace, FaceBook, we all connect and link up via these venues and so many more. I myself have avoided mySpace since the beginning. FaceBook I registered for at some point early in my college years but I rarely visit and if I want to talk to anyone I just email them, so there’s really no networking going on there. Twitter, I got into that back in Nov, but it’s lost it’s glamour and pisses me off more days than it does anything else, the networking has basically stopped. ...

I hear Courtney's frustration. Sites like MySpace and Facebook often do not do it. Other sites like blogs devoted to one specific medical ailment or patient can make great reading but often lack the interaction needed to communicate between like-minded or -afflicted individuals. Courtney is looking into a site called Diabetes Friends. It looks promising. For migraines, I belong to MyMigraineConnection, an excellent site filled with news, announcements, and a whole lot of social networking. There are equally good sites for cancer (almost any type of cancer: breast, prostrate, leukemia, colon, etc.), ALS, MS, etc. etc. An overall good site that I enjoy is Dailystrength. This is an overall support group where you can join communities for various conditions. Bobblehead highly recommends it. The main thing to remember is that you are not alone. Regardless of what medical condition might ail you, there are others out there willing to listen, teach, pray, and support you every step down your journey. No one needs to be alone.

[posted by Bobblehead]

Sunday, February 03, 2008

FDA warns of suicide risk for epilepsy/migraine drugs: EVERYBODY PANIC

News like this really boils the Bobblehead's blood:

FDA Alerts Health Care Providers to Risk of Suicidal Thoughts and Behavior with Antiepileptic Medications The U.S. Food and Drug Administration today issued new information to health care professionals to alert them about an increased risk of suicidal thoughts and behaviors (suicidality) in patients who take drugs called antiepileptics to treat epilepsy, bipolar disorder, migraine headaches, and other conditions. [snip] Antiepileptic drugs in the analyses included the following: Carbamazepine (marketed as Carbatrol, Equetro, Tegretol, Tegretol XR) Felbamate (marketed as Felbatol) Gabapentin (marketed as Neurontin) Lamotrigine (marketed as Lamictal) Levetiracetam (marketed as Keppra) Oxcarbazepine (marketed as Trileptal) Pregabalin (marketed as Lyrica) Tiagabine (marketed as Gabitril) Topiramate (marketed as Topamax) Valproate (marketed as Depakote, Depakote ER, Depakene, Depacon) Zonisamide (marketed as Zonegran) Some of these drugs are also available in generic form.

Read the entire article here.

What I find amazing is that cause and effect of these studies are usually reversed and lawyer-driven. There is no mention that maybe people who suffer from epilepsy and migraines are more likely to be depressed because of their illness and therefore more likely to committ suicide as opposed to the standby, “It's gotta be the drugs.”

There was a similar study that stated women with breast implants were more likely to committ suicide. Honest, look here. Mention that many women who increase their breast size have lower self esteem and maybe are more likely to off themselves appears late in this Reuter's article (and was missing all together in many of the news sources I read when this appeared). Nope the message is pretty clear. Insert silicone, ride the train. Ding dongs.

As for the Bobblehead, Depakote ER has been wonderful. It keeps me less wobbly and heaven knows I am less moody as a whole than when full Bobblehead thrusters were engaged.

[posted by Bobblehead]

Maybe the doctors are the ones that are nuts...

Zebra Sometimes it is a zebra and not a horse

Life is hell for those of us who have gone through chronic undiagnosed problems. There is a clear way that medicine works and as a whole, despite impressions and shock TV, it actually works really well for most of the people most of the time. Routine rules supreme.

Take the Bobblehead's father's heart attack. Fourteen years ago my dad had a heart attack in his one horse town while planting flowers. Classic symptoms: sweating, chest pain, loss of breath, light headed, etc. My mom called 911 as he passed out on the bed. The EMTs arrived (after getting lost going to his not get me started...) and took him to his local hospital home of their resident serial killing “Angel of Death” nurse...true story, but that is for another post. The ER staff stabilized him and fought the clot with tPA (tissue plasminogen activator). They saved his life. For years my father bragged about how his local doctors saved him.

Like most fathers and sons I have a special way of pissing him off. I was not impressed. His heart attack, while very lethal, was text-book. It was also caught early. He did not go into major arrest massive fribrillation (quivering as opposed to beating of the heart. Bad. Death-bad). Again, not to downplay his trauma. It was horrible and his and indeed his entire family's lives were changed forever. But nothing out the ordinary for the medical staff occurred. Treatment was by the book.

Could I do it? No, I have no desire to be an MD. It is easier being a Ph.D. and heckle from the sidelines :-)

Now twist things onto its side. Take symptoms that do not fit together into a simple diagnosis. Take common problems and have an uncommon cause. Take a patient that is persistent but imprecise in some of their description and you can easily send some doctors into a tailspin. “Blame the patient” is a common game amongst doctors. My personal experience has been the ones that are either too cocky or overworked fall into this category. Of course, some doctors are just plain asshats.

I went to a neurologist here in the Atomic City. I had a plethora of symptoms (see past posts). I was in my trusty wheelchair racer. I was head bobbing, crying, spinning, rambling. I was vertigo numbed, insomnia laden, fatigued, headache bound. My face was green and my fingers were bone-white. I was normal. I was coherent. I was prepared with notes and a health journal. I had past diagnosis (all either incomplete, inaccurate, or nonexistent.) The neurologist smiled, interviewed me, said my symptoms did not add up. There was no single root cause for everything he saw.

That was a key. The medical profession loves the phrase single root cause.

Occam's razor. The simplest explanation is usually the correct explanation. This doctor even used this phrase when he spoke to me.

Two weeks later, he saw us again and said he could not help me. He knew I was heading to the Cleveland Clinic and was going to defer to their views. He also was beating around the bush. I felt betrayed but could not quite put my finger on why. I had a cold feeling forming in my gut...

Then on the day before we climbed aboard a plane for Ohio we saw my internist. He told us that the neurologist had called him. The neurologist told my PCP that the problem was “all in my head.” All in my head. I was depressed. I was faking it. It was all physcosymatic. In essence, I was nuts.


He failed in this diagnosis because of the lumping methods of doctors. My parents are still pissed off beyond belief.

Ironically, I am not that upset. Disappointed, yes. Pissed off, no not really.

Occam's razor usually does apply. My condition was strange. There were several underlying cause playing off of each other like a pinball slamming back and forth in the game while the lights flash and buzzers ring out. It really did take a doctor who specialized in complex systems to get to the root cause.

However, he was still an asshat. He did not even give an option that maybe the patient was telling the truth. Blame the patient is a game I have seen a number of times now. This was the worst I had to deal with.

My internist was also perplexed. He asked Dr. Asshat how did he explain some of the blood work? How about the documented hypoglycemia. “Maybe the patient is injecting himself with insulin before he gets tested just to get attention,” was the reply.

I know doctors and I understand the medical profession. I also know my symptoms and know I was not faking anything. I will not be back to Dr. Asshat although he will be hearing from me.

Bottom line: if you are stuck, fire your doctor and keep trying. Be willing to drive or fly to a center of excellence if needed. Fight for your life. There are thousands of great open minded doctors out there. Find them.

[posted by Bobblehead]

Saturday, February 02, 2008

So, you feel a little dizzy?

Take a look at this article in the New York Times: Decent but a little fluffy.