Sunday, August 30, 2009

Bad Headache Day 37 2009

And after such a great week...sigh

The Headache is working its way towards an extremely bad time for tonight. I am going to try to medicate in a few minutes to see if I can head it off at the pass. Since I am taking NO daily headache medication at this time, I suppose one bad day a month is almost acceptable.

I did eat some fresh peaches from a local orchard, which are no nos on the low histamine diet. Could I have woken The Headache up from its nap? I haven't been able to eliminate the tea yet either, but have done pretty well on everything else...but the peaches. Come to think of it The Hives were going great guns last night too. Hmmmm.

I have been very active this week, and did a lot of things on Saturday (yesterday) that I haven't been doing for almost a couple of years - went shopping in the big city, and ate out - then came home, and sewed on my curtain project until about midnight. The Belly was acting up - it didn't like me to eat out I think - and The Headache decided to make its old 3 AM turn for the worse. Nightmares last night about sledgehammers hitting cantalopes. Splitting headache? Gallagher fixation? Who knows!

I have had the occipital stimulator at the same setting for several days, so I changed up and switched programs and cranked up the voltage. Doesn't seem to be working its Mojo on The Headache so well today. I'm pretty sure The Headache would be a lot worse if I didn't have The stimulator on stun. I think I can head this off without an ER visit which means it's been quite a while - in fact since June - since I've had to go to the ER. Woo Hoo!

Guess I will go take my medication and vegetate for a while. I forced myself to buy groceries and cook the evening meal. I tried to distract myself by blogging earlier in the day. I flipped the settings on my friend the stimulator. Yet The Headache continues to increase.

I'm going to have to find where I lost my Mojo..I was just getting to used to having it again.

Hmmm...Maybe Austin Powers took it.

Double Checking Info - How I research

Too Much Information - TMI!

I once worked in a cubicle farm full of ladies, and a lonely male intern. When we ladies got to talking amongst ourselves about female health issues, forgetting there was a 20 year old boy sitting in our midst, he would interject with "How about those Cardinals?" (the local major league baseball franchise) in order to remind us - too much information!

Searching on the web is the same - there is an enormous amount of information presented there, much of it anecdotal, and some of it unreliable. How do you determine what is reliable, and what is not? It's a difficult path to tread, and there is a lot of information to weed out.

There are two ways I search for information - as my physician might from a technical viewpoint, and as a patient would from a personal viewpoint. Giving you a few of my favorite websites and ways to find information I find useful and pertinent.

Looking at information from a technical viewpoint:

When I look at information I think - what information would my physician be looking at? While there are excellent sources that are not "peer reviewed" if I am trying to figure out if a treatment is justified, or if a diagnosis might be warranted, I try to use resources that physicians would use. I think these avenues contain consistently reliable scientific information.

Abstracts that are visible for free on PubMed are easy to search, and I have even emailed some of the researchers for more information and gotten responses. These are peer reviewed (many other specialists/doctors have reviewed them) and so have a degree of credibility that news articles do not. This is how I got more information concerning occipital stimulators and the absence of any medications other than indomethacin that are really able to treat hemicrania continua. Some of them even link to free articles so you can read the entire article (which is better than the abstract any day). You often can buy an article online, but the prices range from $20 on up to $100, depending on the article and the journal/publisher. If you have access to a medical library or college library many of these articles are available without paying the subscription/article price.

I also subscribe to a service at MDLinx that emails me daily links to new medical articles in the desired area of specialty. I even subscribe to the administrative news feeds from this service as I deal in the hospital administrative part of the industry for my job. I have used this service for years, and the information it links you to is up to date. Sometimes you can read the entire article and sometimes, just like on PubMed, only the abstract is available.

The American Association of Family Physicians website is an excellent source for information. Articles always have links to references you can research also.

Official US Government websites for specific problems are great resources for accepted practices and treatments, also statistical information concerning these treatments. The National Cancer Institute website is a great resource for persons with cancer. A big plus on this site is that they have two versions of much of the information - one for patients that is easier to read, and one for professionals. The National Digestive Disease Information Clearinghouse (NDDIC) is a great place for persons with digestive disorders like Celiac desease or diabetes to get information. The National Institute of Neurological Disorders and Stroke (NINDS) has a lot of information and links concerning neurological problems and strokes - headaches included.

Commercial sites I might look at include the pharmaceutical sites for specific drugs, or RxList which has both patient and detailed pharmaceutical information for drug side effects and action. EMedicine from Medscape has excellent physician articles and patient related information, as does Merck at Merck Medicus which requires registration and parts are closed to non-professionals, and the Merck Manuals online which does not require registration.

Other sources can be associations that deal with specific ailments or problems often have physician authored articles available on specific problems and great information. The National Organization for Rare Disorders (NORD) is a great site for information if you have a rare condition. The ICUS website (International Chronic Urticaria Society) and TMS website (The Mastocytosis Society) are examples of two I use for problems with mast cells and hives. Headache sufferers have associations that are organized by disorder - such as cluster headache (Organization for Understanding Cluster Headache or OUCH) or migraine (The National Migraine Association or MAGNUM) or in general such as the American Headache Society (AHS), or the National Headache Foundation (NHF). There are a lot more associations out there than I have room to show, but these should give you an idea of the diversity and depth of information that is available.

I also look at some journals online. I get a news feed from the New England Journal of Medicine and regularly view abstracts and search the Journal of the Americal Medical Association and Cepahlgia, a journal of the International Headache Society a medical professional only organization.

Looking at information from a personal viewpoint:

The organizations for specific disorders often have patient blogs or forums for networking. These can be a great source of information. Some are organized just for interpersonal support purposes, an example being which is a worldwide support group for cluster headache sufferers. These types of sites have information that is "concentrated" and often searchable. The information given is often the result of trial and error on hundreds of patients' experience, and can give you great information on certain types of treatment or procedures for your condition.

Internet groups for specific illnesses (I belong to one for endometrial cancer, and for hemicrania continua) are great resources for support and for information. Participants have a variety of specialists and treatment modalities they use and to my experience have always been generous about adding to your knowledge and giving you feedback. Groups that meet locally are another great resource, but when you live in a rural area like I do they are few and far between.

Blogs are another great resource. I like these because they are chronological - you can see how someone is doing at a point in time, and how they have progressed (or not). Almost all blog writers welcome questions and comments, and offer very unique insight into living day to day with specific problems. Much like the support groups, I think bloggers are great about reaching out to readers and helping to educate the public about health issues. Those bloggers that take the time to create blog carnivals - which are like a journal of different blogs concentrating on a single subject - make it even easier to read about issues in detail. I am not including any specific links to other blogs in this article, because part of the fun of reading blogs to me is the process of finding new ones to read! I keep specific links to interesting blogs on my site, and other bloggers do also.

I also utilize some "networking" sites or forums that are just for health issues - Wellsphere is one, and MedHelp is another. These generally require registration, but the content is for the most part free (MedHelp does charge a minimal fee for some questions answered by physicians). I have gotten great responses to questions in these forums (some from participants in other countries) that have been most helpful! There are more than these two out there, but these are the two I use. Other great networking sites are Twitter, Facebook and other social sites which have groups for persons with certain illnesses.

Hope this helped someone...

I hope this has been of help. If you have already tried most of the options I've shown above you might be able to give me a pointer or two!

The verbage of the professional sites can be daunting at first, but use a good online dictionary to "interpret" the information, and use the sites that have patient vs. professional information and it will help the non-medical person understand what is written.

Always seek the advice of a medical professional before making major changes based on ANYONE's opinion. Even herbal supplements have side effects, toxicity levels, and interactions: what works for one person might cause you problems. Believe in yourself, be positive, and know when you find all sorts of conflicting information this is the same situation for your physicians. Gives you some perspective on why it is so difficult sometimes to get a diagnosis and a treatment that works! Don't be afraid to reach out to various resources with questions. If they don't want to answer, all you have wasted is an email, comment or phone call and a small amount of time.

So I'll bet by now you are thinking "How about those Cardinals??" :)

Friday, August 28, 2009

Life's Been Good to Me So Far

Singing at Work

Worked a nine hour day today! Woo Hoo! And I'm still doing good! Joyous day!

I realized this afternoon that I was singing while I worked. I used to do this all the time but its been over a year since my natural bubbliness had come perculating out unforced. What was I singing? Joe Walsh's "Life's Been Good".

Being spontaneously happy made do my crazy dance down the hallway at work. Ah, if you could only have seen the footwork! A fantastic day all around.

My Ford Taurus doesn't do 185, but if I hadn't paid my speeding ticket from last winter I would have lost my license and not been able to drive!

Thursday, August 27, 2009

Back to Full Time Work - Almost

Plugged In

After so many months of pain and struggling to find a solution for me that actually worked, I have hopes of returning to the life I left behind in 2007. My energy levels (post kidney stones) are getting better each day, and I am attempting to get back to full time work (which for me are 11 hour days when you add in the commute). My concentration is better, although I sometimes zone out still when my brain cloud interferes.

Its strange - my left eye still swells, but my left nostril quit running about a week ago in conjunction with the eye swelling. I get very brief but piercing stabs of pain that come in bunches, but I am not instantly being transported to PainWorld where I am a collapsing shaking quaking tearful glob of Jello. My doctor told me that my pain was severe enough I was getting "shocky" - literally going into shock from the pain, and that was why I get such extremely cold extremeties and shake like someone who is freezing to death when the pain gets in the 9-10 range.

This week, going to my PCP to be rechecked for the kidney stones, everyone commented on how much better I look. Much better than the comments of "You Look Terrible" or being treated like a zombie out to eat their brains.

I've now lost 13 pounds in the last month, which can partly be attributed to the kidney stones and not being able to eat, but I think also there is so much less stress on my body. I can physically move again and not be punished with wave after wave of pain by The Headache.

Strange what difference a few weeks make. Just last winter, I was searching for a solution that would keep me from having to go on disability. Just last spring I was sure I would not be allowed in the stimulator study. Just last month I was sure that The Headache was not going to get better, as it got worse for several days. Just two weeks ago the pain relief really started to happen, and now this week I am feeling it is here to stay. I'm even thinking about returning to graduate school next semester.

Is all the improvement from the occipital stimulator? I certainly hope it is, and I'm not just fooling myself. I'm just so skeptical by now because I have tried so many things that absolutely did not work. And truthfully, The Headache is still there, lurking somewhere ready to take control again. Sigh.

Tuesday, August 25, 2009

Larry Moe And Curly

Another Doctor Dunce Day

My three kidney stones have officially "left the building" Spent about six hours yesterday in the emergency room, trying to stop vomiting. Finally got that stopped, and XRays show no more kidney stones. I had named my stones Larry Moe and Curly since they were doing a number on my plumbing. The ER doc thought having all three passing was why I was having such a problem with nausea and that the episode seemed to go on and on and on.

Phenergan had not worked to stop the nausea, so we tried Zofran (which a nurse friend of mine had recommended some months ago). It took a lot of Zofran to get The Belly to settle down, but it did the job on the second try. I go to see my regular physician for a followup tomorrow afternoon. I feel tons better today, so Yeah!!

The Headache is still hanging around but just in the background. I can pretend some days it isn't even there! I'm getting so used to the stimulator that I forget it is installed. The worst part is remembering not to jerk my neck suddenly. I'm feeling ready to be back at work full time, and will try hitting it as hard as I can this week because I have several projects to get caught up on. I was not planning on the kidney stone hiatus.

I saw my radiation oncologist [Dr. Dunce #3] for my yearly appointment. We discussed my problems from the radiation therapy from least I discussed and he tried to tell me it was not possible. I patiently listened while he tried to blame #1 my diabetes (which started just before I was diagnosed with cancer and has been in excellent control since) #2 my hysterectomy operation #3 the arthritis in my lower spine which coincidentally is only in the pelvic radiation field. He said if I had damage from radiation I would have bled just buckets and buckets of blood. I find that hard to believe, as there are tons of peer reviewed articles that mention fibrosis as a radiation side effect, and bleeding copiously is not mentioned as a prerequisite. I have had thousands of dollars worth of tests trying to find any other cause for my problems, and so far have not been able to come up with anything.

He had not bothered to review my medical records from the last year before I saw him. I find that aggravating. I know he has many patients in active treatment, but take five minutes to glance over the information before coming into the exam room.

This was supposed by be my last appointment with him - I was to be released, but even though he swears I could not have experienced radiation damage he wants to follow me for another year. He said my MRI had evidence of a pinched nerve at S1 on my spine, and I made him read the radiologist's report for me (as I had already read it because I pull ALL tests results for my own records) from my last pelvic MRI and repeat out loud the part that said no stenosis or nerve impingement found. He acted surprised that I have been having pelvic pain and at the same time altered or lack of sensation although we have discussed it every appointment we have had as it has worsened over the years. I guess he only documents "positive" comments and ignores the rest?

I asked him what my next step should be, who should I consult and his reply was to shrug and say "I don't know." Not "let's find out - I need to research this a little longer" or "maybe you should talk to your PCP concerning this" - just "I don't know". Oooh, I felt like screaming! The Doctor Dunces are all from the "I don't know - you figure it out" school of "Ignore it and it will go away" (it being the annoying patient) Medical College. I think they also aspire to the magical thinking theory of medicine - think good thoughts and everything will magically be all better. I'd get better treatment at the Christian Science Reading Room down the road from the Onocology building. At least they take action through prayer!

He also said he would be interested in what I find out. Find out what, from whom?? If he's so interested then refer me somewhere so they will be sure to share the information with him. Otherwise if I have to do all the legwork, I'm not going to have any desire to educate my Dr. Dunce physician.

By the way, I once read there are just two types of people in the world: those who LOVE the Three Stooges and those who HATE the Three Stooges. Which side of the fence do you sit on?? I'm definitely a Stooge lover. Maybe because there is a little bit of Moe in me?

Sunday, August 23, 2009

Spinning Out Kidney Stones

On My Wish List

Wishing for a device that could just spit out my kidney stones, you know: like a giant human gyroscope or one of those paint shakers like they use to mix paints at the hardware store. Still having issues but they are lessening.

A beautiful cool day in August in Missouri. What happened to the global warming problem? We seem to be having the opposite. Downside: I always look forward to August because that means dormant grass - no mowing. The grass is still green and lovely but the mowing continues also.

I am looking forward to a big family reunion for my Mom's family on Labor Day weekend. I will see some relatives I am sure I have never met and meet some relatives I won't recognize, but it will be fun. My Mom came from an extremely large family (14 brothers and sisters) and only she and her younger brother are left from her generation. This is sort of a get together for them. I am glad The Headache is behaving itself because it will be tested I am sure that weekend. I expect there will be approximately 100 people there, and that won't be all of us! Only some of my nieces and nephews can make it, as many live pretty far away.

I am reminded of a post that Migraine Puppet had a month or so ago about a family reunion, and the inability to escape from overstimulation. Hope that mine turns out a little better. There will be nowhere to hide, since the closest I can find a decent hotel room is thirty some miles away. Hopefully I can just turn up my buzzer (occipital stimulator) and drown out The Headache pain if it comes, and most of all hopefully I won't have any pain at all by then! Wouldn't that be great??

Saturday, August 22, 2009

Electronically Transformed

Is The Headache Disappearing?

I am starting to have hope, and that can be a dangerous thing. I have tried to keep optimistic wishful thinking out of the process of working through this occipital stimulator trial. I have endeavored to be as honest as possible about what kind of pain I am having or not having. Despite the pain I have been having from the dreaded passing of the kidney stone, The Headache has settled down and seems to be behaving nicely.

The Headache has been having brief flares of intense pain that quickly subside, instead of hours and hour and hours of intense pain that stayed despite all efforts to reduce it. The rest of the time The Headache has been down in the two to four out of ten range. My medication usage is down also, some days I don't have to take anything at all, and have been able to make do with phenergan and vistaril. I think I may be reaching the end of the bell curve of pain I've been experiencing for the last two years. Finally.

I believe it is the stimulator that is making the difference. I reviewed my pain diaries for the last two years, and my average pain level was between a seven and an eight on the pain scale, with a few months at the completely non-functional nine. I still am experiencing some pain, but nothing at that level and that duration. I keep the stimulator on constantly at a simmer, occassionally bringing it up to a boil. If this is a placebo effect, it sure is a powerful one!

I am able to do some physical activity and not pay for it with hours of increased pain. My blood pressure is staying down (except for the brief and steep rise because of the kidney stone) to my normal 110/70 level. My fasting blood sugar is down to 85, where it was running from 114 to 140. I've lost 10 pounds in the last month because I can move again without my head exploding. Of course being so nauseous from The Belly you can't eat anything helps with the weight loss, but it's not my preferred method. I really need to join a gym where I can swim even in the winter (my preferred form of exercise), but that is going to have to wait until I can return to work full time for awhile. That is where my energy will go to in the next month.

The kidney stones are still in the process of passing. This seems a very long drawn out procedure, but part of this is because I can't keep liquids down consistently. No sleep so far tonight, as I think The Stone is on the move again. It sure has thrown a damper on my work week, and my progress in getting the sun room cleaning project finished. The Belly doesn't like The Stone either. Wish I had an electrical stimulator for The Stone and The Belly!

Wednesday, August 19, 2009

Kidney Stones

What a Day!

Haven't been feeling too great, but thought that it was the aftermath of the flu from last week. I have been having a lot less headache pain, so I guessed I'm just feeling other pain in my body because that The Headache isn't overpowering everything. I have been working more hours this week, almost back to eight hours again - should have known I wouldn't have a 40 hour work week. I feel all whiney tonight but I think it is the pain medication.

I started having extremely painful internal spasms at work, so bad I couldn't hardly talk or walk. I tried to wait it out, saying to myself "Stupid - you worked too much on a ladder last weekend - now you are paying the price!" I wasn't thinking too well - as happens when I'm in a lot of pain - and after a coworker asked what was wrong with me, finally figured out I should go see a doctor. I drove myself to urgent care, and they did a urinalysis finding that I was passing almost more blood than urine, which is a symptom of kidney stones.

The Headache decided to get into what I call a "pain feedback loop" and started acting up too. I fiddled with the stimulator, and it seemed to drop the pain back a notch or two on The Headache.

My blood pressure was sky high, and they did a CT scan of my pelvic region and confirmed that I had kidney stones. My ureter wasn't blocked and the spasms had calmed down by then, so I was given a script for pain medication and told to go home and drink plenty of water. I also was given a strainer to strain my urine for the next two days to try to catch the stone or stones as they work their way out so they can analyze them to see what kind of stone I am making. Ewwwwww. I have a couple of stones that are still in my kidneys, but they aren't the ones causing the pain.

I am extremely nauseated, even taking phenergan is not stopping the vomiting. Their instructions said I was to go to the emergency room if I can't keep anything down. I'm going to give it a few hours and see if this will quit before morning. I have been able to sip some liquids and keep that down this evening but large quantities of water have not been possible. Pacing the floor seemed to help, and I am going to try a hot bath before I go to bed - some web sites stated that could help.

I was hoping all would be back to normal soon, but that wasn't in the cards for me today. Perhaps the remains of the stone will pass tonight and I will be back at work tomorrow. I am still feeling quite a bit of pain, and that's with vicodin and phenergan in me. Comparing kidney stones to pancreatitis, acute pancreatitis was more painful, and the stones seem easier to treat. The Belly doesn't like either condition.

Here's the problem I can see with kidney stones: I live my life on the edge of dehydration. If I increase my fluid intake I also increase the diarrhea that is caused by the damage from the radiation therapy five years ago. I then start passing more water than I take in, and that dehydrates me more quickly. So for me, more liquids equals quicker deydration (believe me, I've had to go to the ER for that a few times before I figured out what was going on). So no matter what I do, I am toast as far as liquid intake is concerned..which will mean more urinary tract infections, and more kidney stone formation.

Ah well, that's what I get for not ordering the extra absorbant digestive system option and the radiation resistant bladder when I was born...and my model year is way too old to upgrade. I'm going to have see if I have some kind of gypsy curse on my head. This illness stuff is getting really old.

Tuesday, August 18, 2009

Freedom From Headache Pain? Almost!

If Only I Had a Second Ford

I'm on a roll, third day in a row at almost full functionality. The occipital stimulator or its placebo effect must be working! I'm up late tonight. Took some medication earlier, but the old wakeup call of the headache got me up, but the pain is sorta there but not there. Doesn't make sense but that's how it feels.

The weirdest thing is that while the pain is not getting out of hand, some of the other symptoms I noticed when the pain was increasing (feeling cold, and having my brain consumed by The Headache brain cloud and speaking in odd disjointed sentences as the brain cells that are being squeezed like a lemon try to spit out words) are still happening. Getting rid of the pain is plenty, but it would be fantastic if the rest of The Headache disturbance would disappear too!

The problem I am having gaining freedom from this headache must be because I don't live in a two Ford household like this lady in this old ad I found while wandering about the web.

I can't get out of the house, not because I am fighting a demon headache, but because I don't own two Fords! Not having the extra Ford makes me a virtual prisoner in my own home! It's a dilemma - if only health insurance would pay for the second Ford so I could be cured. Now that's a solution that works for both healthcare reform and the auto industry bailout at the same time! I guess I should find a husband too while I'm at it - gotta have someone driving the other Ford! Times surely have changed since I was born in 1959.

Sunday, August 16, 2009

Mission Accomplished [Almost!]

Second Good Day in a Row!

I think I may be on my way to setting a new record post Headache. I have now had my second good day in a row. I did finally have to medicate last night, but no medication at all today for The Headache or The Hives. Unfortunately The Hives had decided to increase since I have not been whacking away at them with medication but The Headache has behaved admirably! The sun room is looking much better too.

I was told it takes 8 weeks to really heal from the operation to implant the occipital stimulator. I am going into my eighth week this week. Could I have a working copy and it is helping? Could I be so lucky?? Or is it just the Windex effect, as I have gone through two bottles of original formula, plus a can of Pledge.

I was able to wash all 16 windows inside and outside. I got the floor and clutter 2/3 complete, with only the third by my desk and shelving needing final straightening up and cleaning. I would have gotten that done, but I had to make a three hour trip to Wally-World to get groceries, dog food, and material to make new valances.

My white lacy valances are now white and ecru striped valances - the dust was just too ingrained to get it out. I washed them several times but its hopeless, so I am going to sew some new valances. My sister said they didn't look that dirty and I replied "everything around them was so grimy you didn't notice!" Instead of white, I am going to make some striped valances with floral accents. The accent fabrics are because Wally-World didn't stock enough material in anything to make 16 valances so I will have to stretch the length with different fabrics. I would have preferred to buy already made valances, but alas it was much less expensive to sew them myself.

On the scale of dirty, the room was really just on the dingy side, not up to really grubby yet. It just had not had a deep cleaning for a couple of years - you know where the furniture all gets moved, and the tops of the door frames get scrubbed, and all the niknaks get washed, not just dusted. I think all the dirt moved off the sunroom and onto me. Eyeck! I will work on the living room after I get through with the sunroom. The sunroom is looking sunny again with clean shiny windows and a freshly scrubbed floor. Now to get my little corner done before next weekend. And to sew the new valances. Hoping I get more great days this week to finish up!

Saturday, August 15, 2009

Celebration Saturday

Woo Hoo!!!

I'm having a quiet celebration at my house. My happiness is because today - with no medication whatsoever - I have been able to do major cleaning at my house! I have gone up and down stepladders, removed curtains, washed curtains, cleaned windows, swept and mopped floors, all without The Headache interfering. I can feel The Headache there, but instead of getting worse as I have stepped up physical activity (as it has for almost two years) it is just staying the same.

My poor windows - I have 16 single hung windows in my sunroom - oh the dirt! My poor valances - not sure if they will ever be white again, but I'm trying to get them clean!

The last time these were cleaned was when my niece was here visiting several months before The Headache began. Auch der Lieber! The grime - eeeek. The spiders - eeeek. The spiderwebs - eeeek. I'm not completely through all 16 windows but only have a few left. Hoping to finish before it rains! Taking a quick break to blog and then back to Windex! Maybe the curative powers of Windex have healed me. Who knew??

My mission this weekend is to clean the sun room and rearrange the furniture. I hope to report "Mission Accomplished" tomorrow evening, but I'm making no guarantees.

I'm embedding a YouTube video of a Japenese high school band playing Kool and the Gang's "Celebrate!" It's like a mix of field routine and orchestra - wish I had something like that when I was in high school band! And they play really really well despite the gyrations..makes me feel like dancing around too! Woo Hoo!

Primer #1: American Health Billing Basics

Can it be MORE Complicated?

The Headache is behaving itself this evening. Could it be the stimulator? Hard to tell, as I am taking a bunch of antihistimines to quell The Hives. The Belly is feeling that it is over The Flu. Yeah!

As a review for myself (I will soon be working with a new hospital client) I thought I would share some information about medical billing. You will probably find this boring, but I deal with this every day. I will write about this subject again next week if The Headache behaves and The Brain is still working, so you have advance warning and can skip reading that day!

HIPAA: Health Insurance Portability and Accountability Act. This is why you have to sign the same "Privacy Forms' over and over again saying if you can be contacted by phone, a message left, who can share your priveleged health information. If you suspect that your healthcare information has been improperly accessed/shared you have to report the breach of confidentiality yourself. This law is enforced on a complaint basis only, so there are no "security HIPAA audits" being given by the federal government to insure compliance. The law protects employees so they can move from job to job and their preexisting health conditions cannot not be excluded from their next employer based health insurance policy. It is also supposed to "simplify" medical billing processes, but like many federal laws just made them more complex. There are many loopholes in this statute, even in the part about protecting your right to coverage.

Subscriber ID: This is a unique identifier your health insurance entity has assigned to you. This identifier allows your health insurance company to process your health insurance claims with the proper pricing structure for your health plan. A group name and number may also apply. If you are an old fashioned Medicare recipient, your subscriber ID is called a HICN (Hic Number) Health Insurance Claim Number. This ID can also be called a certificate number, as health insurance policies issue a certificate of insurance stating the boundaries of your policy. Information may be encoded within your ID about your policy, your marital status, whether or not you are a dependent of the policy holder or the policy holder yourself, your employer, and with Medicare whether you are a retired railroad worker or not.

Pre Determination: Your insurance company can pre-determine if they will pay for certain services before you have them done. An example would be my occipital stimulator surgery. Since it is considered "investigational" by my insurance company, if I had not been in the study I would have asked for an official Pre-Determination. If the Pre-Determination process said the surgery would not be covered, I would then have to appeal the Pre-Determination. Dental services often get pre determinations for full plans of treatment.

Prior Authorization/Pre Certification: These terms are synonymous. They are approval from your insurance company stating that a service is already authorized before it is done/issued/billed. If the service needs prior authorization/pre certification and for some reason it was not OK'd, healthcare entities will ask you to sign that you will be financially responsible for it if the claim does not go through. Unless you are certain that you want this service done and pay for it, try to see if there is a problem with the prior authorization/pre certification paperwork. Sometimes a peer to peer review can be done about the authorization request (this means your doctor talking to an insurance company doctor) and sometimes you can appeal the denial. There is a specific number given for each authorization and a date range that the authorization is effective. Your claims when processed will be compared to these authorizations to see if one applies. Some drug plans refuse to cover high dollar name brand drugs or certain allergy drugs unless the drug has prior authorization/pre certification from the ordering physician.

Advance Beneficiary Notice: For Medicare recipients healthcare entities are supposed to notifiy the patient/responsible party that an outpatient service is NOT covered by Medicare and present this information in writing to the recipient, giving the patient the opportunity to refuse the service, or agree to pay if it is not paid by Medicare. If the healthcare entity does not do this, and the service is not paid by Medicare, the patient cannot be billed for this service.

Appeal: This process may vary insurance company to insurance company and state to state. In my state you are entitled to three levels of appeal. Many claims are considered at the first level of appeal. In general each level of appeal is handled by persons higher and higher in the chain of command of the insurance company who have more authority to make determinations about "grey" areas of coverage. A lot of the process for payment of claims is done by computers and sometimes yes or no decisions that computers like to make do not take in all aspects of a situation. There are ways to bypass the computer system by "adjusting" a claim to pay a certain way but this is only done once an appeal or readjudication (repayment) is requested and granted.

Adjudication: Final payment determination of a health insurance claim.

Primary/Secondary/Tertiary: The order in which insurances are billed. If there are two insurance coverages for the same person (for example both the patient and the patient's spouse have insurance on the patient) some insurance companies use something called "The Birthday Rule" to decide which coverage gets to be the primary coverage: the insurance paid for by the person whose birthday is the earliest in a calendar year is considered primary. Primary insurance is billed first, secondary insurances only consider what the primary did not pay, and tertiary insurance often doesn't have anything left to pay. If Medicaid is one several payors, it is always the "payor of last resort" and not the primary. Medicaid is primary only if it is the only payor.

Coordination of Benefits (COB): A department in your insurance company that looks at claims that have more than one possible source of payment. They often write letters asking for more information. The purpose of this department is to see if the anyone else could possibly pay for your claim. Certain diagnosis that are considered trauma related (broken bones, cuts, back surgery) will often be automatically routed to this department since there may be other companies/persons liable for the injury.

Medicare Secondary Questionnaire: A recommended series of questions for Medicare recipients to determine if another source could be billed for services other than Medicare. An example would be someone who has a Black Lung card and is being seen for complications from Black Lung. This person is also disabled and has Medicare coverage. In this case, the Black Lung program would be billed as that is the problem being treated, and Medicare would be "secondary" to Black Lung, so would only pay the remainder the Black Lung program wouldn't pay. There are different questions about spousal insurance, and coordination periods based on why the person is eligiable for Medicare: 1 - age related eligibility (older persons) 2- disability related eligibility 3-ESRD related eligibility (end stage renal disease). This is tricky to navigate through and Medicare patients get confused by all the questions. Similar to the COB deparment at private insurances, trauma codes may be reviewed by the Medicare claim processing intermediary for other primary payors. Medicare is looking for someone else who could pay this bill just like the private insurance companies do.

This is just the tip of the billing iceberg. No wonder patients with billing/coverage issues feel they are sinking in icy waters just like the Titanic! Its the mountain under the water not the little bit sticking up on top you can see that's the problem. I'm hoping that the healthcare reform being contemplated gives us all enough life boats to get to safety!

Thursday, August 13, 2009

Counting Money Dulls Pain Sensation

If only I had any to Count!

I listened to an NPR piece the other day "Your Brain Thinks Money Is a Drug" where a psychological study showed that after counting money people demonstrated reduced sensation of pain. The study said that it had to be "significant" amounts of money, so I don't know if I will be able to try it, unless Monopoly money works.

Have been sick with some sort of stomach flu - did some work from home today,but didn't go in. I went in yesterday, but I thought The Headache was kicking a fit, so went home after an hour. Glad I did - The Headache was worse because I had a fever! Was sick sick sick last night, better today and the fever finally seemed to break this afternoon. At work they said they hoped I hadn't brought the H1N1 virus to them. I hope not. I try to be extremely careful at work because one of my co-worker's sons has very fragile health.

The Hives have taken a life of their own since that doctor punched on my brown spots. I had to medicate this afternoon with doxepin and vistaril, which lowered them just a little bit. They are popping out all over and I am very itchy.

I read a post from Banner at Adventures in Occipital Nerve Stimulation that her stimulator/operation was billed to her insurance at $138,000! OMG! So far my insurance has been billed about $32,000 for both the trial and the surgery/implant. That means my participation in the study so far stands at about $100,000 worth of free equipment/charges. I didn't get one of the nifty rechargeable battery units like Banner, so maybe it might be a smidgen under the $100,000 mark. However, I should count in a lifetime of battery replacements which I suspect would add quite a bit to the overall worth! Maybe I should quit complaining about how much I have been shelling out for travel.

Some of my Canadian friends have been blogging about the United Church of Canada conference. Everyone there looks like they are having a great time. After reading about the Church on Wikipedia they seem to be the Northern equivalent of the American United Methodists, including the Canadian branch of the church I attended as a child - United Brethren Evangelical. They don't seem to be nearly as solemn as the German Methodists I grew up with. I wonder if the cold weather makes people more jolly?? If so, perhaps I should be planning to retire to Canada! At least they already have nationalized health care.

Wednesday, August 12, 2009

Low Histamine Diet

Wondering if it will help

The "old" name for cluster headache was histamine headache, because it was felt that histamine release had a causal relationship. I found lots of research that indicates a link between histamine release and nitrous oxide and headache pain, whether migraine headache, or other headaches, and other studies that seem to discredit this link. Who knows which is correct. Pubmed, while helpful in research, can be contradictory. No wonder busy physicians have trouble keeping up with the latest studies!

I found an abstract that describes why indomethacin works well for certain types of headache. It inhibits both the dilation of dural meningeal blood vessels and the neurogenic activation that causes this dilation. Sumatriptan showed the same qualities as indomethacin, which may be why I had limited success with a triptan for The Headache (never stopped it but would decrease the pain for about four hours) and indomethacin helped the most.

Since I know I have problems with histamine and mast cell activation (I am stuck in a cycle where I am allergic to my antibodies which then causes my body to release more antibodies which then aggravates my allergy and starts the whole circle again) I wonder if there are just too many histamines in my body and that could be aggravating The Headache. I am taking several types of histamine reducers (the combo of vistaryl or benedryl and phenergan which are all histamine blockers helps The Headache pain somewhat) and have found a Histamine Restricted Diet at the Internation Chronic Urticaria Society website that I'm going to try.

Many of the items on this diet are substances that were migraine triggers for me - chocolate, red wine, aged cheese, chemically preserved meats - that I quit trying to consume years ago. A lot of the others I already don't eat because they give me hives, but the hardest to restrict will be TOMATOES. But you know, the last few weeks was the peak of tomato season and my tomato consumption and The Headache was much worse. Maybe that's why its been especially bad in the middle/end of the summer???

One interesting fact is that leftover cooked meat has more histamine than freshly cooked meat, and the histamine levels increase with time. Explains that after Thanksgiviing migraine I always had the next week after eating left over turkey! I always blamed the stress of the holiday!

I'm going to try the four week elimination diet. The hardest for me will be tea, as I drink a couple of cups of white tea a day. We'll see if it works. Another diet on the site I may try also is the salicylate free diet, but only after I have tried histamine restriction first. In my self-experimentation I don't want to mix results!

I have hives behind my knees and in my ears and on my stomach this morning. I'm not ever going to poke on one of my brown spots like they did. The aftermath is not worth it! I'm going to give the histamine free diet a try, and see if there is any improvement. Today The Headache is already going strong - started acting up at about 5 AM....perhaps I have too much free histamine floating around due to the hives....??

Tuesday, August 11, 2009

I Am Allergic To... [Drumroll Please!]


Got back from Kansas City. A pretty good day as The Headache waited until I was almost home to move on up the pain scale. Much better than my last trip to the big city where it was to the point I couldn't make sense by 9:00 AM.

The occipital stimulator must be helping The Headache (surely) as my blood pressure was at a level I haven't seen in a couple of years - my normal 110/70. The stimulator seems to make me a very sleepy driver so I have been turning it off while I drive. Not sure if I am just imaging this or not, but I am dangerously sleepy with that thing on. Wish it would do that at night! Maybe this is just chance, because I have had some bad nights right around my last three solo driving adventures and I may have been abnormally tired??

The big news of the day, I don't need to worry about the dog, cat or horse allergies - they barely register when compared to my allergy to MYSELF. That's a hard allergen to avoid. They looked at my giraffe spots where past hives had left their mark, and of all things poked on my freckles on my back, which made a hive pop up on my wrist about 5 minutes later, and then started my lips swelling when I was almost home. They haven't ruled out mastocytosis, which my last immunologist thought (but then didn't think so but then did wonder if) I had that or a related disorder, but say I definitely most definitely have autoimmune hives.

I have been put back on Plaquenil which I felt gave me a small improvement last year to address the autoimmune aspect. I have been taken off the Xyzal (which I felt didn't do a thing) but will keep on taking the Singulair. They gave me a script for a lower dose of doxepin, and said the results from it won't be immediate - it make take months...sigh. But the doctors cheerfully told me I should be happier overall because it is an anti-depressant!!! I guess that they are assuming I am depressed. I don't think so but perhaps I am in denial - you know...that river in Egypt... I go back in November.

In addition to returning, they want my primary care doctor to run regular blood tests for them, and for me to get a biopsy done of a hive attack if I get a "really big bunch of them". Not sure if they mean "big" as in size, or "big" as in many or both. I guess I will just have to let myself break out and get it biopsied at the emergency room while I get treatment for them - NOT. I don't think that one is going to happen. I also have to have a "plaquenil" eye exam done sometime in the next couple of months whatever that may be...

Had a pleasant ride around Kansas City, and drove through some neighborhoods I haven't seen in about 25 years. One old downtown warehouse where they wholesaled prizes for circuses and carnivals is now a yuppified condo complex. Kinda miss the old scrubby warehouse, which is now occupied by classy urban folk sipping lattes in the coffee shop at street level. A doctor's plaza where my niece went to a pediatric opthamologist many moons ago (he was able to prescribe her with glasses before she was one year old!) is completely gone, and the small community type hospital near by is now a mega hospital that towers over the surrounding buildings. I guess I should go back more often, eh?
Off to buy coffee - we are out, and apparently everyone forgot it until it was time to make a pot!

Monday, August 10, 2009

Going To Kansas City

Yet Another Appointment

Going to Kansas City to KU Medical Center to see the immunologist/allergist group as a followup to last month, leaving early in the AM to get there by 9:00. Rush hour traffic gets on my nerves, especially when it is just sit there and inch a little forward and sit there again. Reminds me each time why I choose to live where I do. There are advantages and disadvantages to everywhere you live, I just don't have to put up with traffic gridlock very often.

I grew up north of Kansas City, and going to the "big" city was quite the adventure. It's a fairly green city with lots of trees and grass, and used to have the most fountains per capita of any city in the United States. There are hundreds of beautiful fountains that run from little modern ones to huge extravagent classical ones with water spouting sculptures.

I have gone to the Nelson-Atkins Museum of Art in Kansas City quite a few times, sometimes to see special exhibitions, sometimes just to wander. They have a beautiful sculpture garden, with the signature look of Claes Oldenburg's Shuttlecocks scattered starkly white against the emerald grass as if some giants had just finished a game of badminton. Maybe if The Headache behaves I will take the time to go visit and see what's new.

Worked a few hours today, but The Headache tried to ramp up at about 3 o'clock in the afternoon, just like it tries to wake me up in the wee hours of the morning at 3 AM. I turned the occipital stimulator up and went home to sleep. However, I had guests at home which I was glad to see - my nephew and his two sons (my great-nephews) had stopped by to visit. Such a sweetie (I'm glad he's a lot taller than me!) he replaced some flourescent lights for me in the kitchen. His boys are growing so big - one is in junior high this year! That officially makes me really old, the kind of wacky ancient great-aunt old that makes children run and hide! Bless their hearts, they even visit with their old great aunt Emily a little bit if they have time. But no rest. I'm getting ready to go to bed now, but no medication tonight as I have to drive tomorrow quite a distance.

Blog Carnival Time Again

This Month's Theme Migraine & Family

Diana Lee at Somebody Heal Me has again graciously coordinated a blog carnival. This month's theme is about Migraine & Family. There are some thought provoking blogs featured there! Please visit!

Sunday, August 9, 2009

Lost Day Due To Doxepin

Sleep Away The Hives?

Tried to take doxepin last night to assist with removing The Hives. It thinned down The Hives a little bit on my face, but I took one 25mg capsule, followed by another a few hours later (within the allowed dosage range on the prescription). I finally went to sleep at about 2 AM (when I took the second dose) but have been asleep most of the day, finally waking up completely at 7 PM. I think the sedation side effect of doxepin may be too much for me! I want to be awake enough to attempt to work next week.

I go back to Kansas City to see the immunology/allergy specialists on Tuesday. I have been taking first Xyzal, then Xyzal and Singulair, and lastly doxepin, Xyzal and Singulair, plus the vistaril and/or benedryl I take for The Headache and I still have hives. They are less pronounced, and have retreated from part of my back, but they are still there. I was hoping the doxepin would be the miracle drug that would cure everything, The Hives, The Headache, and The Belly. No miracles today, just long long long naps with very weird dreams. I may just have to learn to live with The Hives, just like The Headache and The Belly.

The occipital stimulator had been running mostly on "simmer" settings for the last couple of days, and I had a very active day yesterday without getting much worse. I had to push the settings up to "rapid boil" this evening, and hope for headache eradication to follow.

I took my megadose of Vitamin D yesterday, and have added more calcium to my daily vitamin intake. Won't have to take another megadose until next Saturday. The vet had no suggestions for my Augie Allergy except to bathe him more often. I don't dare bathe my old cat Wilson, I think it would kill her! She is 19 going on 20 years old, which is around 86 for humans. A geriatric cat for sure!

James at Headache and Migraine News, had a link to a self scoring MIDAS test (for disability due to headache). While my score was lower than it was 4 months ago, it still shows significant disability. I hope that in a couple of months I can retake this and be lower yet again. I am afraid I will have to be tons better for me to return to Pre Headache levels.

Too many things wrong with me at once - wish I had thought to buy the extended warranty package because my body got all worn out at the same time!!

Saturday, August 8, 2009

Vitamin D Deficient

Allergy Testing Results

Got a big packet in the mail yesterday. It was from the allergy/immunologists I saw last month, and included my test results and a prescription for Vitamin D. Apparently I am moderately deficient in vitamin D, the sunshine vitamin. It is a food born vitamin that is absorbed by the gut and potentiated by sunlight, and since pelvic radiation treatment has left me with some permanent absorbtion problems I shouldn't be surprised but I was. I am a great milk drinker, have it every morning, but it must not be enough. I'm to also increase my calcium supplementation. More pills....sigh. According to a medscape article there might be a link between Vitamin D deficiency and migraine, but its hard to tell because they are both very common...

From my tests it seems I am allergic to DOGS and CATS and HORSES and not any pollens or dust mites. I don't have any horses, although I have lots of Amish drive by's that may have kicked that off, but I love my dogs and cats. I have had dogs and cats my entire life. I don't have any sinus allergy symptoms at all. Not sure what to do about it but rip up the carpets and put down hardwood floors. Can't get rid of my little people pets. Going to take my pup Augie to the Vet this morning for his toenail trimming and see if the Vet has any ideas. I run Hepa filters and ozone generators in the house because my mother has allergies, so not sure what else but vacuum vacuum vacuum will do any good.

I also seemed to test positive for Autoimmune Urticaria, which is hives caused by autoimmune problems. I show some antithyroid antibodies, anti IGE and anti IgE receptor FcεR1 antibodies. I figured I would have the antithyroid problem as my thyroid quit functioning properly in my late twenties. According to the International Chronic Urticaria Society website this may be why all the antihistimines I take don't fix the problem. I go back to the specialists next week to see what the next step will be. I am not a candidate for immunosuppresant therapy because of my cancer history. Maybe I will just be itchy and bumpy for the rest of my days.

The Headache is halfway behaving itself the last two days. It acted up yesterday afternoon and evening, but calmed itself back down when I increased the settings on the occipital stimulator. Could it be helping? Hard to tell.

Friday, August 7, 2009

Banishing with All My Might

Bad Week

I finally ate something besides rice today, and The Belly is feeling mighty sick. The Headache has been maintaining a pretty good nausea signal to The Belly so I have not eaten much in the last few days. I was starting to have blood sugar problems (too low) because of that so I tried some protein today. I am trying now (seven hours later) to keep from throwing it back up. I guess that is TMI, huh?

My face is swollen and red because of the hives, and my facial pain from The Headache is making a comeback big time today. Overall the pain levels are down from the last two days, so I am considering today a Victory even with a red bumpy face! I am going to take more phenergan in a few minutes and try to grab a few hours sleep if possible.

I am trying to pump up the forgiving side of my nature. I get all mule-headed about some things, and then I have to remind myself - will this matter in ten years? Heck in ten years I'll probably be lucky if I can find my way to the bathroom from my bedroom!

“Confront the dark parts of yourself, and work to banish them with illumination and forgiveness. Your willingness to wrestle with your demons will cause your angels to sing. Use the pain as fuel, as a reminder of your strength.”

August Wilson

Wednesday, August 5, 2009

"You Look Like Hell"

How Do You Respond?

Another partial day of work. I am trying to make do with as little medication as possible, hoping that the occipital stimulator is doing its thing (or is it?) and will keep The Headache at bay. Less medication should equal more hours at work, but it isn't working out too well this week.

I took a short walk outside late afternoon, and on coming back one of my co-workers said "You look like Hell". What can you say when the inside of your head feels even worse than your outside appearance is showing? I said "Well, that's where I live almost every day since The Headache came to stay" and went back to my office. I know they don't understand what The Headache is like, and I don't want anyone to ever be in the place where they would have to learn.

In August last year The Headache was terrible. Maybe there is a seasonality to The Headache. One set of physicians thought I was having cluster headaches intermixed with hemicrania continua. I think I am just on the severe side of the spectrum of pain that comes with HC. I wasn't on indomethacin last August either, just like this August. Ahhhh, lovely indomethacin that helped my pain but put my pancreas into paroxysms, I miss you!

I am going to see if I can get The Headache under control in the next couple of days. I have another trip to Kansas City next week to see about my hives, but I would like to try to ramp up to 8 hour work days again to see if I can do it. I am feeling impatient, and I wish the two month wait until my "real" stimulator programming kicks in was over. And I can't mess around too much with my pain treatment as part of the study parameters. Sigh.....

Stop the Spinning Wheel, I want to get off!!

Nausea ad Nauseum

The Headache is keeping me up tonight. I'm excited about a project at work that we had a long meeting about today, but am hoping The Headache doesn't get in my way again. The nausea is pretty bad, but my legs have quit being jumpy from the pain. I've medicated as far as I dare to this evening, so no more medication no matter what for another 4 hours. Got the head spins - similar to the bed spins but no bed and no alcohol!

I am amazed at how many blogs entries I have posted so far this year! 150! And I didn't think I would keep it up over a couple of weeks when my niece dared me to start a blog last winter. I'm glad a few people think to read my blog, and have had some very helpful comments from them, but I think I would keep it up even if nobody read it because my niece was correct - it is therapeutic. It feeds my inner muse and allows me an artistic outlet as well. I might be able to have the same effect with a paper journal, but online is more fun! I have made acquaintences with some very astounding intelligent, informed and dedicated bloggers.

I don't know if I have ever gone into my own background as what I do for a living. I work for a small company that installs information systems in hospitals. My specialty that I manage for them is medical billing. I have worked all aspects of healthcare - as an administrative person at a VA outpatient clinic, as a billing supervisor, as an accountant for a large healthcare entity, as a systems analyst and trainer for a healthcare IT department, as a private consultant specializing in process change and analysis, as a special project manager for BCBS, as an operations manager over claims for BCBS, and now I work for this small company and our clients training new users, fixing problems, working as a consultant for billing and general patient accounting, as internal advisor on all things billing related, and as a project manager and programmer when needed. Before The Headache interfered I was more than halfway to my masters degree in hospital administration with a subspecialty in project management.

I love my job and these months where The Headache has required working less aggravates me. The only solace is that when I am feeling better I can turn work out very quickly! I don't have anyone that reports to me and that's great too!

My days at the claims circus at BCBS wore me out on people managing. At one time I had 74 direct reports and 16 seperate specialty work queues. That many direct reports is pretty hard to keep track of, and personality conflicts in a cubicle setting can get out of hand pretty fast. Somedays you just wanted to give two people who were feuding a couple of pocket knives and let them have at it in a locked room, and whoever came out alive still had his/her job. I think there probably was some rule against that in their employee manuals, drat it all! 99.9% of my employees were exceptional and worked great together but that .1% could cause more havoc than the rest combined.

Don't know why I am blogging about this stuff - I am sure it is as exciting to read as watching paint dry or waiting for water to boil. I met an ex-employee of mine today who was in the .1%, and perhaps that revived my PTSD - Post Traumatic Supervisory Dysfunction. Must've reminded me of Blood Sweat and Tears - Spinning Wheel!

Tuesday, August 4, 2009

Tomorrow Tomorrow.....

It's Been One of Those Days!

I was able to work today, but I guess it's Monday on a Tuesday for me! The Headache is still going strong, but was able to work without any medication today which is a plus, since I commute about 40 miles into work. The longer I can go without medicating, the longer I can stay at the office. Hoping that I'm not facing a week of Monday's. {sigh}

On the upside, my lucky bamboo plant seems to be growing taller and has put on new leaves. Maybe I am gaining luck! Oh, if that would be only possible. Perhaps my feng shui is wrong....maybe I should rearrange my space? Another day perhaps!

I read Jasmine's Cove blog entry about the vestibular system and physical therapy. Very interesting! I had not thought of inner ear disturbances causing headache misery. I wonder how many times this diagnosis is missed?

Trying to keep a positive outlook in spite of negative input. The sun will come out tomorrow! Bet my bottom dollar!

Monday, August 3, 2009

Brain Mold

My Brain Needs a Good Scrubbing

Another lost day today. My brain feels bruised and beat up, like a basketball that is starting to go flat. No work for me today. Too much medication to drive, too much head pain to think! I've got a breakout of hives that is in addition to my regular two year long hive attack. My face is puffy and itchy. Sigh...... My boss was wonderful when I called in too sick to come to work. I am so disappointed that The Headache is still calling the shots!

Tommorrow will be better. To reinforce that thought I think I will go into Zig Ziglar mode - How are you doing? Better and Better!!! I think I am heading towards my three or four good days of the week. Not sure what to do if my losing streak keeps going.

I guess I better get some Scrubbing Bubbles to remove the brain mold that has crept into my head these last few days!!! I may need a scouring pad as the mold is probably deep rooted by this time.

Sunday, August 2, 2009

Sleepless Night

The Headache From Hell

I'm very tired this evening. I slept some of the day, but The Headache is still bouncing around my brain. I'm trying to wait it out. If I can just get the pain under control I think I will be able to sleep.

The lidocaine patches aren't making The Headache pain worse. I am much relieved. When you have multiple pain regions they seem to echo off each other, increasing pain with each echo. The lidocaine patch stops one major echo point so the shoulder blade pain is no longer feeding back into The Headache pain. Thank heavens!

I have had the stimulator set on my new stimulator setting since this afternoon, and it seems to be helping. Can't be sure since The Headache is still roaring along. If its psychosomatic relief that's OK because I'll take any relief I can get! If its actual relief, I am grateful.

My brothers did the weekly grocery shopping for me today. I didn't even have to ask, they volunteered. I have not been able to do much except take a shower and get dressed, and work with my computer a bit. It was very sweet of them to offer, and was a bright point in my day. They even brought the groceries in and put them up. What troopers!

I have had some really weird dreams today. Most of them were about being cold and trying to find the perfect coat or blanket to get warm. My body does the weirdest thing when the pain starts getting bad - my body temperature drops, sometimes to the point I am shivering. I wonder if anyone else has this problem? Sometimes my blood pressure will drop at the same time instead of increasing with the pain. Weird, eh? I got so cold in Cleveland waiting for my plane I bought two t-shirts and a shawl to put on as layers over my clothes and I still was cold.

The hypothalamus which is part of the mechanism of hemicrania continua, as it is in cluster headaches, controls body temperature, blood pressure, and shivering. I think that the hypothalamus involvement must increase as the pain increases, and somehow is dropping my body temperature and inducing shivering. The same area that controls shivering also controls memory, so maybe that's why I can't seem to remember things when The Headache gets bad.

Hoping for a better tommorrow! I have been wishing that the stimulator will keep me from being disabled by The Headache. I guess I should just be grateful if I get some pain relief, even if I still have significant disablity.

Saturday, August 1, 2009

Bad Headache Days 35 & 36 2009

Travel Travails

Made my way back from Cleveland Thursday, delays delays delays with an hour on the tarmac in Chicago coming back. The smells of airplane fuel and hot tarmac compounded with hot humidity and airflight turbulence shook my brain into a state of pain.

I arrived at the airport late, and was only able to drive about an hour before I had to get a hotel room and spend the night. The Headache was already starting its run Thursday night and its still going today (Saturday). I'm pretty well not doing anything, trying to make it behave. I tried to work yesterday but called it quits very early. I hope to work from home tomorrow if The Headache behaves itself.

I did take the RTA system in Cleveland (public transport), and I have to say they have a pretty good system there. My study coordinator Lilly walked with me to show me a shortcut to a rail station that cut almost a half hour off my trip back to the airport. Thank you Lilly!

My incisions are healed, and a nice doctor (my specialist had a family emergency and couldn't be there) prescribed some lidocaine dermal patches for the nerve pain I am having under my right shoulder blade. Used one last night and it worked. Will see what happens tonight, but I am afraid it may have aggravated The Headache, so if The Headache gets worse I won't be using these. These were designed for post-shingles nerve pain, so it seems to soak right into the nerves near the surface of the skin.

I can now swim - no hot tubs - so maybe I can swim a little before the summer ends. I don't think I will be going into any lake water, but maybe some swimming pool water would be nice. I have healed very well, especially since I am diabetic and that makes me a little riskier for post surgery infections.

The St. Jude Medical/ANS representative took a lot of time working with the programming of my stimulator. I did complain about the travel, but everytime I go I get a different rep so I am sure my complaining did no good. Fortunately I think I am near the end of the travel portion of the study. I have one appointment in two months, and then one at six months (December?) after implantation. The ANS representative said that at the next appointment they will turn on all the programming and will be able to customize it to my needs. I also got a new "paddle" the radio frequency connection between the controller and my battery pack/lead. I thought I just wasn't able to find my butt where it is implanted (although it is a good sized target) but I guess it was a defective part!

I drank orange juice yesterday morning before I remembered my headache specialists warning about high potassium levels and increased levels of pain. Yes, it did ramp up The Headache worse. I tried drowning it out with water, but too little too late. She said when possible drink lots of water when the pain starts ramping up to wash out the potassium. A nurse told me once that potassium also increases nausea, so it makes it hard to drink more when you want to throw up more.

I wish there was a lidocaine patch I could slap on my brain! The Headache is winning today. I'm going to crank up my new stimulator program I see if it helps when nothing else has. I'm extremely tired and my thinker has quit thunking so if this post is a little disjointed I'm blaming The Headache!