Sunday, November 16, 2014

A Trial of LDN

Many CFS/ME patient use low dose naltrexone (LDN) with some modicum of success.  You start at a 0.5mg dose and slowly work your way up to 4.5mg in 0.5mg steps.  I've been excited to try this med since I first heard of it a year or so ago.  I even got a scrip from my now retired CFS doc but it was for 1.5mg which caused me sleep problems.  When I went to see my new CFS doc (whom I'm not going back to but that is another story for another day), I talked her into giving me a scrip for 0.5mg dose.

Last week I tried my first pill.  I took it just before bed.  I then slept for 8 or so hours and woke up with "one of those" headaches that I knew would escalate as the day went on.  Sure enough it developed into a migraine.

Now, I'm not new to migraines, having suffered from them on and off for 30 years or so.  However, I have an odd type called ice pick migraine due to the fact that the pain is a sharp stabbing pain in the side of my head.  I usually have them just over my right ear but occasionally have a milder version over my left ear.  These are excruciatingly painful but I very rarely get nauseous from them and never have aura.  When I first came down with CFS/ME my migraines became a regular monthly visitor and I had to start Celebrex to control them and my daily headache.  Apparently the CFS migraines were linked to brain inflammation.   Anywho.....

The LDN migraine was totally different.  It was along my occipital ridge at the base of my skull.  As it intensified the pain spread around to the front of my face and involved my jaw and teeth.  Instead of it being a stabbing pain this was constant.  As the day wore on it escalated to the point of photosensitivity, sound sensitivity and full blown nausea.  I skipped all my first line defenses of magnesium +B6 doses with a side of espresso, and the Excedrine migraine meds and went straight for the Tramadol and ice packs.  This controlled things enough that I could lie down and binge watch Elementary which has more dialog than flashy action sequences.

For the migraine day and the following migraine hangover day I stopped all meds and supplements while my system calmed down and returned to "normal".  I got on the LDN facebook group and started asking questions.  The basic answer I got was "oh yeah, that is normal.  Just tough it out and keep taking the LDN.  The headaches will go away in a couple of days."  They must have missed the migraine part of my post.  This was hands down the WORST migraine I've had in decades.  There is no "riding this out" or "tolerating it" until my system acclimates to the new med.  It is simply just too painful.

So now I'm scared to take it again.  They told me to titrate it down to a smaller dose.  Other than cracking a capsule open and using a wet toothpick to pick up the dust, I'm at a loss as to how to reduce my dosage further.  I would love for this to work for me.  I really really want it to work for me.  At what point are the side effects bad enough for me to give up on something entirely?  So the bottle is on the kitchen counter, mocking me daily.  Daring me to try one more time.  Was the migraine a fluke or was it really induced by the LDN?  Can I reduce the headache intensity by reducing the dosage even more?  Why didn't I get a headache with the higher dose?  I need to pick a week that I can lose to pain and recovery before I can try it again.  Right now I'm just plain too scared.  It f'n hurt!

Saturday, November 15, 2014

Sick Humor

You know you are chronically ill when your house hunting centers around the drive to your doctor's office.

Friday, November 14, 2014

In The News

Lots of interesting news of late: there is the Standford study showing inflammation and low blood flow in the brains of CFS/ME patients that hit the main stream press a few weeks ago and then there are these interesting tidbits:

1)  MIT has started a new department to study the human microbiome.  I've been wondering for quite a while now if the microbiome in CFS/ME patients has been altered by the illness.  I've heard anecdotal stories of patients being cured via fermented foods, traditional foods and/or juicing.  All of which will alter the microbiome significantly.  And of course, there is the work of Dr. Chia who believes that CFS/ME is a virus of the gut.  I would love to see some CFS/ME researchers take up MIT on its offer of money and resources for further study, maybe even Dr Chia himself.

2) In a completely different department, MIT has figured out how to store data in E. coli.  Makes sense since it can be used as a four bit storage device which increases storage capacity immensely over traditional two bit computers.  The funky thing is that they could be used in the microbiome research listed above.

3) Since diving down the MTHFR (genes responsible for methylation) rabbit hole, I've developed an interest in SNPs (single nucleotide polymorphisms otherwise known as genetic abnormalities) for conditions other than MTHFR.  Low and behold a study was recently published on SNPs associated with CFS/ME.  I'm very annoyed that it is behind a paywall since I would love to read this report in its entirety.  However, here is the abstract and conclusions:

4)  And here is more detailed study of methylation problems in the CD4+ immune cells of CFS/ME patients.  I haven't read and absorbed all the info here as it is a very long report.  However, I believe it would tie in nicely to the study on SNPs listed above.

5) It would also be interesting to look at the genetic data from CFS/ME patients to check to see if they have anything in common with the HLA genes for chronic inflammation that is found in Lyme and mold illness.

6) And in the exciting field of epigenetics is this study on immune system changes that are intentionally induced by human direction.  This could potentially lead to treatments that could downregulate or upregulate the human immune system which would a boondoggle for CFS/ME patients.

Tuesday, November 11, 2014

Anniversary Redux

So several weeks ago, hubs and I discussed the horrible anniversary and we both agreed to a do over.  We were going to pick another day and make pretend it was our anniversary and try again.

Believe it or not this one turned out WAY worse than the first one.

Me (a little over a week ago):  Well the kid is going away this weekend so Saturday would be a great day for our Anniversary Redux.  Let do dinner, possibly a movie but generally make a point of spending the day doing stuff together.

Hubs: (on Thursday night after I had an IV and was severely brain fogged): Hey, can I go out to the movies with my guy friend on Saturday night?

Me: Sure.  (I very rarely say no to these requests since it isn't fair to lock him up in the house just because I'm sick.)

Friday, Me: Hey!?!?!  We were supposed to go out for our anniversary on Saturday.

Hubs: Yeah, but I asked you about the movie with J. and you said okay.  I just figured we could go out on Sunday instead.

Me: But kid will be back then.

Hubs: He is old enough.  He can feed himself.  (We usually always have family dinners.)

Saturday comes and I'm fuming mad.  Hubs tells me that the sewer is backed up and that we have to get a repair guy in there to clear the line that goes from the house to the street.  This is 3pm.

I get on the town local's Facebook page and ask who should I call.  Turns out the town will come and fix it for free.  I tell hubs and he calls and gets an answering service.  4pm we get a call back.  Will be there in half an hour.  Sure enough he shows up about 4:30pm.  Hubs is out buying me a sub for dinner.  I show the guy the pit in the backyard that accesses the line to the street.  The pit is almost 3' deep but is full to the brim with brown water and smells disgusting.  He drags his gear over and asks me for an outlet for his gear.  I get the outdoor outlets working and plug his equipment in.  He starts work.

Hubs gets back hands me my sub; goes in the backyard and hands the guy the last of his cash (the service itself was free); comes back in and raids my wallet for his night out with his friend.  Oh and he is going to see the new science fiction movie in 3D that I would just love.  He leaves.

I eat my sub.  I keep checking on the worker.  Keep asking him if he needs anything.  He needs an extension cord so I run and go find that.  When he plugs in his gear, it pops the breaker.  I have to run into the garage, find the breaker and try to reset it.  (At this point I knew I was cooked.  I have severe CFS and here I am pretending that I'm a normal person.)  I run back out to the deck and still no power so I take the extension cord and run it from the kitchen out to the deck so that he has power and the cats can't get outside.  I go back to watching TV and the cat falls asleep on top of me.

About an hour later he knocks on the door and says he can't clear it so I go out into the yard with him for a chat.  I call hubs and ask him if the pit was full when he dug the shit out of it earlier.  "No."  So I tell the guy and we both decide that maybe the mainline in the road needs clearing out.  He leaves to get another guy to help him out.

By 6pm on the day of my anniversary redux, I'm staring at two town sewer trucks in the middle of my street flushing the main sewer line.  My entire house smells of sewage even though nothing actually backed up into the house itself.  I'm talking to the cat because I'm in the house all by myself.  Back to watching reruns of Elementary.

7pm and I'm on the deck watching the two guys trying to clear out the line from the house to the street.  They need a garden hose and running water.  Off I go to the shed.  Drag out the lawnmower so that I can get into the shed.  Drag out the hoses.  Untangle one and hope that it doesn't leak.  Drag it over to the faucet.  Get it hooked up and turned on.  Drag it over to the far side of the deck.  Untangle it three or four times so that water will actually go through it.  Place it away from the power strip so that the guys don't get electrocuted.  I collapse on one of the deck chairs.  One of the guys asks where hubs got to.  I told him he went off to the movies.  Stunned the guy asked me "You mean he left you here all by yourself to deal with this?" and he didn't even know how sick I am.  Then the whole thing struck me: this was supposed to be my anniversary redo and I'm here breathing in sewer stink helping the workers while able bodied hubs is off watching a new scifi movie with his friend.  What the F is wrong with this picture!?!?

In the irony of all ironies, I'm again eating a meatball sub on my "anniversary" and smelling sewage, just like a month ago.  Only this time I'm alone.  At least I'm not in a sports bar this time and the town sewer workers turned out to be really nice guys.  Hubs on the other hand....  What in f'n hell!?!

I'm done.  I give up.  I'm not planning anything.  I don't want to go out.  I don't give a crap.  If he wanted to take our anniversary redo seriously then he would have never gone out with his friend.  He managed to place the whole thing on my shoulders claiming that I gave him permission to blow it off.  Then me, the sicko, got to stay home with the sewer backup exerting way more energy than I have spoons for while he goes out.  I'm vacillating between being really angry and not giving a shit anymore.

Strangely we are getting along really well.  Probably because I didn't pop a cork and he got to do what he wanted.  In the meantime, I feel vaguely used and slightly depressed.  Oh and I found a gorgeous loft in Chelsea.