My apologies . . .

My wife has pointed out that not only did I miss making a post last Saturday, but that it has been a while since I’ve posted anything other than Saturday posts.  Here is why.

I’m still holding on – waiting for the chance to place the order for the last device I’m willing to try to change the conditions living in this body is forcing me to cope with.  My wife said that we should be able to order it by the end of June – and that means before the end of this month now that the calendar says it is June.  I’ve been bouncing from one storm to the next, and one migraine headache to the next.  Sometimes they overlap, sometimes the migraine fills the gaps between the storms, but it is indeed rare that I don’t have to put up with how my body deals with either.  Sadly – I vaguely remember writing a similar statement during the spring a year ago.  Or was it 2 years ago.  Oh well – the heavy storm cycle won’t last forever, and I’m still hopeful that the migraines can be altered as well.

My sleep, when I get it, doesn’t leave me feeling rested or rejuvenated.  I walk about with a mental fog so thick that even things I know need doing get forgotten.  I have a “brilliant idea” for a blog – and by the time I get to my computer I either forget the idea or how I was going to make the point.  It happens to other things as well – I once boiled a pot of coffee almost dry by forgetting to reduce the burner temperature after it started perking.

Anyhow, before I get up from the computer, I’ll be selecting the post for tomorrow, and getting it scheduled to post.

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More on Imitrex . . .

Friday’s post made a pretty radical statement about Imitrex, so I thought I should put it in context by posting the entire relevant section of the e-newsletter Dr. Sears sent out last week (my wife read her copy on Thursday, I think).  So, here it is:

“I treat a lot of different kinds of chronic pain at my clinic. The patients most desperate for relief are the migraine sufferers.

If you get migraines, you know they can knock you out for days at a time.

The World Health Organization says migraines are to blame for more lost years of healthy life than multiple sclerosis, epilepsy, ovarian cancer and tuberculosis combined.1

But mainstream medicine knows very little about the cause of migraines or how to treat them. Most doctors prescribe Imitrex. That’s a drug to help relieve headaches, pain, nausea, and sensitivity to light and sound.

But Imitrex can actually cause headaches. They’re called rebound headaches.

And it has other terrible side effects like slurred speech… diarrhea… hallucinations… twitching muscles… vision changes…

And over-the-counter remedies are no better. Aspirin, naproxen, and ibuprofen can make the pain worse. They can cause an “analgesic rebound effect.” This means your headache can come back when you stop taking them.

And we’re learning more every day about just how dangerous these drugs really are…

In fact, a study published earlier this month in the journal BMJ found that your risk of having a heart attack increased as much as 50% after taking ibuprofen

Regardless of dose or length of time you take it…

Sometimes, nutrient deficiencies — like a magnesium deficiency — can be behind migraines. But for some patients, making sure they get enough of the right nutrients isn’t enough to stop the pain. Still, that doesn’t mean I resort to Big Pharma’s meds…”

So, there you have it.  It is a vicious cycle for me – because it all started with pain management following the treatment of a bone tumor.  The pain meds continued over a period of  around 15 years almost daily, before I even got an inkling of an idea that this might not be smart.  Shortly after that, I had my first migraine – which I later learned was likely CAUSED by the long-term use of the pain meds.  So, I start using Excedrine for the migraines, and my joints started to decline more rapidly – so I try to medicate them (by this point I was using non-prescription liquid pain relief as much as possible) and the migraines got worse.  Eventually I got word that Imitrex would help, so I asked the VA for that and got it.

In the last 6 years I started using reading glasses – and about a month ago I asked my wife to get a new pair with stronger correction.  And here is something I didn’t even think to connect to the whole cycle – I get random muscle twitches pretty much everywhere, but especially in my eye lids and legs.

So, to answer a question asked about Friday’s posts – no, this is not sustainable.  Not really.  But, I still have little choice but to bear with it until we get the cefaly device to see how well it helps me. If we get it ordered by the end of June, I’m thinking I should know how well it does or doesn’t do the job by mid September.

I’m hopeful, but I am also realistic enough to admit that it may fail to help – if it does, I’m not chasing any more rainbows.  I’ve seen people bankrupt their families trying to buy a few more days.  I will not do that.  However long I have remaining – and let’s be realistic, no matter how bad my quality of life gets, it could still last another 40 years – I will accept and use to be the best partner for my wife that I can be with what I have to work with.

RIP to an uncle . . .

I learned a little while ago that one of my mom’s brothers passed to his next adventure early this morning.  While I can’t say he was someone I felt close to, he treated my family alright when we got together while I was growing up.

Still, it is a fitting capstone to a particularly gruesome week.  In my last post, I stated that I woke up with another migraine.  So, imagine my surprise when my wife reads to me from an email newsletter by Dr. Sears (I hope I spelled that right) that Imitrex actually CAUSES migraines – and makes them worse by both intensity and frequency.  This is because of a physical manifestation known as a rebound effect.  In other words, what it does to provide relief is only a treatment of symptoms, and the problem is worse when the medicine wears off.

Well, I’ll vouch for the “makes them worse” part – this last migraine lasted 5 1/2 days, and for the last few months the classic ID tags of a migraine (light sensitivity, upset stomach, audio distortion) have been showing up in pairs about half of the time.

Oh, and the rest of the story on how this week went?  Before the migraine had run it’s course the National Weather Service was posting severe weather watches for this whole area.  The storms started about 10:30pm (2230 hrs) last night, and it’s been pretty steady ever since.  MIGHT end tomorrow, but no promises.

Veteran’s Hospitals have a math problem . . .

Ok, first let me acknowledge that I DO understand that there are health issues to be concerned with.  Still – this goes way beyond health, into absurdity.

The specific problem I’m talking about is with the prescriptions for Imitrex that I’ve been getting.  Ever since I started getting it – they have only sent me 18 pills at a time, and limited me to one refill every 3 months.  About 2 weeks ago, I sent them a secure message asking for another refill.  So far, they have only given me 25mg tablets, but I know it is available in dosages as high as 100mg, so I asked if I could get either a higher dose, or more pills, or both, since I keep running out.

They replied that they limit the number of pills they send because they don’t want me to exceed the 200mg maximum dosage per day.  So, here is where they have a math problem.

They only send me 18 pills every 3 months.  It takes 8 25mg pills to REACH 200mg for a day.  Each of my migraines lasts 3-4 days, and I usually have about 3 migraines every month.  I run out of pills if – ONLY on days I have a migraine – I only take 1 pill each day.

To actually risk excessive dosage, I’d first have to have enough pills to TAKE an excessive dosage – because running out is a MISERABLE option.  So, 8 pills per day for 9 days a month for 3 months.  The ABSOLUTE minimum number of pills I need for a 3 month prescription is 216, IF I was taking 200mg per migraine day.  Some months I’d need as many as 336 at that dosage level.  Still, even at the minimum – the actual prescriptions they have given me have fallen short by almost 200 pills every 3 months.

And the fools wonder why I haven’t gotten enough help from their treatment protocol to be able to return to work.

Are you sleeping enough?

One of the services that I use to monitor the “world” of the internet is Stumble – I click on the Stumble icon in my browser, and it randomly jumps to a new website based on general categories I’ve indicated an interest in. I also periodically get a newsletter where they highlight some sites I might like based on reviews I have written on their previous recommendations.

One recent newsletter caught my attention with an article about SLEEP. Probably because the last couple of years I’ve had a real problem with getting enough. I am certain that I haven’t slept 7 consecutive hours in over 3 years, and there are whole months that go by (especially in spring) when migraines and arthritis pain tag-team to force 2 or 3 tries at sleeping to reach an accumulated total of 6-7 hours.

Anyway, this article was worth a careful reading to me, and I thought some of you might like it as well.

http://time.com/4672988/the-sleep-cure-fountain-of-youth/

10 days grain-free . . .

I thought it was a good idea to turn off all the politics and just do an update on this grain-free experiment my wife and I are doing.  We’re now 10 days into eating NOTHING with any known grain in it.

You know what?  I’ve felt like this before.  Back in 1995, when I was a newly minted Minister in the Church of Scientology.  Completing the ordination was the final step on my being fully-trained for my post, and thus opened the door to my doing training/processing that wasn’t just about my job.  The first action I did?

The Purification Rundown.

I can’t say anything bad about the Purif (as it is usually called).  It was the first step in opening my eyes to the environmental hazards this “modern” world has forced us all to live in.  That, and I did get some awesome results.  That said, the last 2 days of the Purif were, for me, a total living nightmare.  The pain was worse than anything I’d ever experienced, with the exception of passing a kidney stone (I’ve done that 7x now).

This grain-free program is bringing that all back.  I got my very first migraine in the Purif (although I didn’t know to call it that at the time).  Now I’m getting what I’m calling micro-migraines.  The pain is the same as a migraine – usually in the same place.  However the headaches only last between half an hour and 90 minutes, and I can have 3-4 of them a day.  Every day.

There is another reason I deliberately tied this experience to my experience doing the Purif.  They are both processes aimed at better body health, and as such, you have to expect things to get worse before they get better.  Think of it this way – something made your body ill – to get better you have to chase that something out of your body.  While it is stirred up and running out, it is going to be affecting everything it passes through on it’s way to the door.  Sort of like chasing a wild bull through a china shop.

So, even though I feel lousy right now, I have enough awareness of what is going on to accept that this is what is SUPPOSED to happen, and I’m going to hold on and tough it out.  I’d think it should start getting easier in a few days, except that I have no honest idea just how bad the damage to my intestines was.  This might actually take a few months to get all the way through, for me – because I took NSAID pain killers like breath mints from 1980 to 1995.

Anything worth doing is worth doing right the first time.  The way out is the way through.  Whatever turns it on, turns it off.

I think you get the idea.  Mostly I’m trying to remind myself.

Fine Tuning . . .

First off – let me state with no reservations that the paleo diet has helped me fantastically.  It managed to accomplish what no other diet I’ve tried over the last 20 years did – I lost weight and kept it off.

I recently had to go to a chiropractor, because I got a little too ambitious with a deceptively effective easy exercise – the Hindu Squat (to see an example of how to do one http://www.cbass.com/Furey.htm  ) and over the next day my lower back and hip muscles practically locked up. When I was at the chiropractor (who I’ve been seeing off-and-on since 2006) his jaw dropped and he congratulated me on how much different I looked.  He totally understood that the paleo diet has been helping, and he said my other exercises were putting the muscle in the right places.

So, I’m pretty much on track to taking back my life – with one exception.  The migraines and arthritis still get in the way of much that we’d call normal living.  However, my wife and I have already established that a healthy diet can do fantastic things for our bodies – she confronted and BEAT endometriosis using nutrition and chiropractic – so we decided to see if it would work for migraines and arthritis, too.

Turns out – going paleo for weight loss was a huge step in the right direction for that, as well.  My wife recently found Dr. Peter Osborne’s new book “No Grain, No Pain” (ISBN: 978-1-5011-2168-5 or ebook ISBN: 978-1-5011-2170-8) – and one of the big bombshells we got right away is that migraines AND arthritis can be caused by the EXACT same thing – a gut made unhealthy by the use of NSAID pain killers.  Which I used very heavily in the first 15 years after the surgery on my bone tumor – back when I didn’t know any better.

The good news is that the book also said that the unhealthy gut is reverseable, with the right diet controls.  First on the list was getting rid of all grains – which is a lot harder than it sounds.  Grains are EVERYWHERE these days – thickening agents in canned soups is just one example where you wouldn’t think to look. Another is instant coffee – all of them. If your meats are raised on grains, you’re still getting grain in your diet even if you try to avoid it.  HFCS is also a trigger – and has the additional warning that it is one of the vehicles by which you’re putting poisonous MERCURY into your system.

Oh, I got a bit off track.  Anyhow, the book has 3 sections – part one covers the science behind the program, part 2 tells you what you’ll be doing, and part 3 has a diet and menu plan to put you on the track to hopefully the best health you’ve ever had.  We aren’t quite at the level of starting the 15 day challenge yet, but we’re taking steps in that direction.  Finding a reliable source of grain-free meats is tough – at least around here.

Keeping it real . . .

I have a confession to make; I have a bad habit.  When I get a new idea, I get so enthusiastic about it that I tend to forget that it might not work out like I want.  For example, when I first started seriously thinking about the femur replacement, I was so thrilled about being able to do serious exercise again that I didn’t stop to realize all the other things going on that won’t be fixed by that surgery.  So, to put my feet back on the ground, I thought I should make a list:

arthritis and bursitis in shoulder

bratwurst sized hernia along the center of my abs

migraine headaches

bad teeth (seriously, I should just get them all pulled and get full top/bottom dentures)

This does not mean that I shouldn’t get the femur replaced – in fact, I am still trying to move forward with the VA about it.  At this point, though, I don’t even know for sure the VA will agree that I should get it, so optimism is premature.  I just want to be realistic about how much my life will change once it’s done.  Yes, I will be able to do more weight lifting and eventually work back into distance running, but I’ll still be curled up in a dark room 1/3rd of each month on average, and I won’t be exercising my abs at all (except indirectly).

Painful Intuition

I’m still dealing with a migraine, but this needs to be shared.

I have believed for several years now that intuition, for lack of a better term, is a skill that can be developed.  Oh, and I’ve been actively trying to develop mine, by looking for those times when my “gut feeling” told me one thing was right, and then seeing how things turned out.  Over time, I’ve been learning to trust my instinct, even when the facts of a situation appear to go against it.  That isn’t easy for someone who once (and to some degree still does) venerated SPOCK from Star Trek.

However, the problem with intuition is that when you get one of those feelings, it is tough to explain the idea to someone else, as my little narrative is about to demonstrate.

Re-wind to about 0300 hrs Sunday morning.  I was sitting there playing a video game when I felt a migraine kick in.  It was a real hum dinger, too.  When my wife got up, I had all the lights off except for a table lamp 15 feet away from me, and the TV volume was turned down so low you couldn’t hear the sound at all if you were 10 feet from the TV.  Even with all of that, I was wearing sunglasses.  I’d taken Imitrex AND Excedrin, and still couldn’t relax.  It was THAT bad.  I normally would go to bed at around 0700, but I was up until 1330.

I mostly tossed and turned, not getting any real rest, until my bladder needed relief at almost 2100.  When I got up, one of the first things I noticed was that odd “gut feeling” that something was off.  I couldn’t tell you what it was, but something was wrong.  By the time I got to the living room, I noticed that my wife was about a half-hour into the most recent BATMAN movie (with Christian Bale as BATMAN).  If she’d stayed up to watch the whole thing, it would have been almost 2300 when she went to sleep.  I did a bad job of pointing that out to her, and we had a small spat and then ironed it out.  She went to bed, and I sat there wondering how I could have expressed my concern better.  On went the sunglasses, and I did a bit more gaming.

Then, at about 2345 I noticed what the problem was that had plagued me hours earlier when I got up.

My wife’s bedside alarm clock went off at 0600 Monday morning, and when she sat up I handed her a single AA battery.  She put her glasses on, looked it over, and asked why she needed that.  I whispered that she needed to follow me.

In the living room, her chair sits closest to the wall clock AND the TV.  Due to it’s orientation, her natural habit is to look up at the clock whenever she wants to know the time, even when she’s currently using her laptop.  At 0600 Monday morning, that wall clock still said it was 2048 of the night before, and the second hand was still struggling mightily to complete it’s climb to 2049.  Suddenly she was very glad I’d made an issue of her getting to bed the night before, even if we both still acknowledged that I had done a poor job of it.

After a quick action of replacing the battery, the clock resumed working perfectly.

An apology . . .

I feel a need to apologize for not writing something yesterday, and not having anything good to write today.  I haven’t had more than 3 hours of good sleep at a time in nearly a week.  The vacancy yesterday was due to running out of pre-written blogs.  Unless I get very inspired by something, I might not write again before Monday – the next day when we have good weather scheduled (at this point – we’ll see how that plays out).