Slap a CPAP on Me!

I had my "treatment" sleep study last night, and I've learned that I hate CPAP machines.  Although at the end of the evening I was almost used to the one plastered to my face. 

Initially, a small nose CPAP was put over both nostrils, and I inhaled with my mouth closed.  Sometime in the night the tech named Joe came in and switched out the nose for a mask that went over both my nose and my mouth.  I have vague recollections of the change.

This was a little difficult for me to get used to.  I could never cough properly, which is very important to me, and clearing my throat was an impossibility.  Whenever I exhaled I would feel the warm air on my mustache, and I had a reflex to not inhale.

Eventually I sort of adjusted to the device and I merely hated it.

I was asked to lie on my back, because that's where my apnea is worst.  So I had some events which the machine corrected for.

Wonderful.  Lie on your back so we can catch you having an 'event'.

I talk to the doctor October 31st.  I wonder if I'll be impressed with my condition? 

I went to bed

Well, here it is almost a week later and I have been really sick. 

Thursday I woke up with painful body aches and bodily sensations as though I had the flu.

Friday I was feeling OK when I got up, and as the day progressed, I felt worse.  Saturday, Sunday, rinse and repeat.  Monday I started to feel better and Tuesday I was silly enough to go in to work, and came home after having been clocked in for 30 minutes.

Relapse.

Thursday through Saturday were the worst.  Full body aches and that flu like feeling in my muscles. Since I had been to my oncologist on Wednesday I could see what my white blood cell count was and at 4.8 it was in the low-normal range.  

When Mary and I couldn't find a thermometer at home, we bought one. When we finally got it to work my temperature was 97.3 which is right about normal for me.  This was probably Sunday.

Saturday through Sunday my stomach really started to feel sour, so I took some Tums and Zantac to help my stomach.  It didn't help much.

I'm somewhat better. Not much, but at least the flu like feelings are gone and I only have stomach upset to deal with.

Almost a Week Later

It's almost a week since I dropped my dosage of Zonisamide from 150mg down to 100mg.  As in the come down from 200mg to 150mg, things have changed; somewhat.

I had a good night's sleep Sunday night (after knocking 50mg off my daily dose Saturday night).

I would say that I'm more intellectually functional than I was a week ago.  I'm sure my bosses will be happy to hear that (I don't believe they read my blog); but I have an ability to get lost in thought now which might be good for my programming.  Not so good when something has to get done.

At every dosage level, there are different side-effects.  Sometimes it's hard to tell what is a side effect and what is genuine illness.

Thursday I started feeling like I had the flu; not a good feeling.  It was a busy day none-the-less.  I went to bed almost an hour early, and woke up feeling OK.  But later in the day I have the same bodily sensations I had the day before.

I feel achy, by body has that flu like sensation and chills, although I don't have any nausea.

I don't know what I have.  Mary tells me I feel warm.  I can't find the thermometer to know what my temperature is for certain.

Do I watch Fringe Episode 2 Season 5 or do I go to bed early like I did last night?

Dropped My Dosage

I took the 50mg capsule of Zonisamide out of my pill box last night before taking the remaining 100mg capsule.  Which leaves me with a bit of a headache and some transient neck pain this morning, but it's not as bad as it would be without the drug and the stuff doesn't work all day anyway.

I took my vitamins among which were copious amounts of B2 and Co-Q10 which will help build my brain back up to it's former greatness.  Or at least give it a nudge in the right direction, probably a more reasonable outcome.

There is no fix for this.  I'll have intermittent pain for the rest of my life.

I don't feel like having the more dramatic treatments, like the catheter up my spinal canal outside my thecal sac.  Or burning off the pain nerves.

Like so many treatments they have their potential down sides, and the doctors that provide the treatment are oh so confident.  Ever since Revlimid I'm more cautious.

I stepped down the treatment because I had a number of things that either were side effects or could be side effects: shortness of breath, difficulty solving problems, and tiredness. 

I've had these problems for the last several weeks, in numbers, as well as a bodily insensitivity that left me feeling numb.  I'd say depressed but at the time I was too much of a zombie to grasp that possibility.


I'm feeling better today. With the exercise I've been doing I'm feeling that contented healthy glow and my head and neck only have intermittent pain.

Now if I could only have a nice cup of coffee.

Alive and Well Living the Dream Sort of

This week was better than last.  No memorials to attend.

I'm still in remission, still having headaches and I have noticed that even without coffee, I'm wired.

Maybe it's just me.

I had a Skelaxin about 9:30 AM (a few hours ago) and maybe my body is reacting to it.  There is a muscle that comes up the back of my neck on the right side that leads to a headache at the top of my head.

I frequently have headaches across the top of my head.  As though I had struck it with some low hanging object.  Front to back, just on the right side. Just above the forehead.

It's annoying, maybe it will go away if I take a nap.

Personally, I think these headaches are the result of the upper body work out that I've been giving myself.  I've been using the bench press machine (last Thursday) to work my shoulders without working the parts of my spine right at the base of my neck.

I suspect that working those muscles puts a strain on the neck muscles. And thus the headaches days later.

Other machines have caused different neck issues. Like a kind of stiffness and discomfort right at the juncture of my neck and my back.  I leave those machines alone.


I will be having a treatment sleep study in October.  I guess I get to try on different CPAP machines.  Not looking forward to that, but I might heal faster afterward.

Followup at the Headache Place

I visited the Headache Institute last Thursday and talked to my person there whom I believe to be a physician's assistant.  She's able to prescribe, so I asked her to prescribe the 50 mg capsules of Zonisamide that I need to keep the dreaded headache away (at least in the AM).

She's stunningly attractive, and for that reason and others, I think I talked too much. 
 
It had also been very a busy and stressful week, so I was tired. 

At work a friend's wife had died, and I drove to the memorial service on Wednesday with one of my other co-workers which was about an hour away and sat through the entire service which was at a United Methodist church.  I'm not religious, but it was an experience in nostalgia; searching for the right page in the hymnal.     

Being around people is draining.

I had spent an extra hour physically at work on Tuesday because our staff meeting had to be rescheduled to accommodate the memorial service and worked extra when I got home, to make up the time that I would lose.

I was exhausted by Thursday, and actually got a headache when I arrived at the Institute. 

I have lost 21 pounds since I was there last in mid June, which is more a triumph of diet than exercise; although I have been going to a gym.  

I get the majority of the drugs and treatment that I truly appreciate from them. 

The Gabapentin really prepares me for sleep, the vitamin regimen of B2 and Co-Q 10 (400mg) per day with a meal has helped my ability to think enormously.  And although the original target dose of Zonisamide was a bit much, the reduced dosage works perfectly.  Not to mention the NSAID prescriptions which I could not do without. 


Under most circumstances for most of the day, the headache and neck discomfort have disappeared. And I have appropriate remedies for everything else.

So I am very pleased.

My Quasi Normal Back to Living Existence

It is of course wonderful to have a neck, and mine has been feeling wonderful.

Pain free, sometimes. My head too has been feeling better, which is different than how I've felt in the past.

I am on 150 mg of Zonisamide (an anticonvulsant) per day which I take before I go to bed, along with a Gabapentin which is also an anticonvulsant.   My headache doctor explained that it was an anti-spasmodic, and he should know.  Maybe it's both.

I discovered (partly by accident) that a 200mg dose (the original target dose) of Zonisamide actually gives me headaches, fogs my mind, and leaves me with all-day nausea.  

Glad my dosage was reduced.

One of the downsides of these drugs is I cannot drink any alcohol.

Of course, the headache people tell me I can't drink coffee either, but it probably doesn't have the potential for a deadly drug interaction.  It just might make my headaches worse.

"The caffeine stimulates the brain." which would make my headache worse.

I had been to the local Pain Center and they offered me a procedure that would alleviate my neck pain temporarily, but could have some problematic side effects.  Basically the procedure was to insert a catheter into my spinal canal about the C7 or T1 juncture, outside the thecal sac that the nerves live in, and run it up to the C3 vertebra, leaving a trail of cortisone which is an anti-inflammatory.

This reminds me of the time a catheter was inserted into my right nostril.  When it didn't go up there it was inserted into my left nostril (but without the appropriate nostril numbing jelly).   This gave new meaning to the term "up your nose with a rubber hose".
 
I discussed the Pain Center's catheter procedure with my family doctor and we both agreed that the potential benefits were not worth the potential pain and suffering from the procedure (fear and loathing), potential for reaction to the cortisone (pain or burning sensation) or the very small probability of damage to my spine (paralysis).

I'm not doing that badly right now, why risk it?

I think more than half the patients have relief for six months or more, whereupon they are required to have another procedure to get relief which might last longer.  A smaller percentage don't have as long a benefit and they have to go through it again, sooner.

Of course a small percentage have some worse effect just because their bodies don't like the stuff being put into them, or some other problem develops.

They gave me a document that described the various potential risks and benefits and I remember that a chest-tube might be needed in the event of certain events. 

Ever see "ER"?

The chest tube is that big rubber hose that they stick into your chest between a couple of ribs (they have to cut into you first) to drain your chest of fluid so your lungs don't collapse.

I just didn't want to deal with it and I'm more careful after the Revlimid.   I understand that I can be that less than one percent who have a bad outcome.

I'm doing pretty well on the 150 mg of Zonisamide, and in the afternoon when my neck starts to act up, or I feel a headache coming on,  I just take something for it.

I am so very relaxed, and the pain is gone when I'm drugged to the nines.

I have prescriptions for Diclofenac and Meloxicam and I had been taking one or another as the mood struck me (or the pain, as the case may be), but when I was consulting with my doctor about whether to have that neck procedure he explained that with chronic pain I should be on one or the other (not both) on a daily basis.

He said I should "Pick a horse, and ride it!"

One Meloxicam or two Diclofenac, daily.

I chose Meloxicam, one a day and it's working out.  My chronic pain has been greatly reduced (I think I have a bit of arthritis in my neck which exacerbates my neck problem).  I just need some Skelaxin or Tizanidine, depending on whether I want to stay awake or not, to ward off the occasional headache/neck discomfort that rears it's ugly head now and then (every day).

I've been taking some Gabapentin early to kind of get the brain slowed down so I can sleep. It helps to ward off the insomnia from the coffee I don't drink anymore.

I have a hard time falling asleep, I wish I knew why.

At the headache place they said it was coffee.  I disagree. 

I can report that the vitamin regimen has been working.  It's 400mg of B2 (Riboflavin) and 400mg of Co-Q 10 together with a meal daily.  It works.

It seems that chronic headaches (mine is now classed as a drug induced migraine without aura) cause damage to the brain.

So I've been walking around, programming, conversing, and feeling a bit like a zombie because my brain has been on the fritz.

I don't suppose the chemotherapy helped my brain much either (R-CHOP or Revlimid), the brain side effect is commonly referred to as "Chemo Brain". 

The vitamins have been working and I feel much more alert and mentally awake.

It would be nice if they could help my body to recover.  I still have very low energy for no good reason.  I should have recovered from the chemotherapy by now.   

Of course the sleep study (which is a story in itself) indicated that I have mild sleep apnea and I am going back so they can have a ''treatment" study.

Yea, big old CPAP machine next to me at night!  Bring it!

With the sleep apnea resolved I might actually recover some day, which is unbelievable in and of itself.

The diabetes is doing better as well.

Mary went to our family doctor and she came back motivated to avoid sugars and starches.  Well, I had been trying to halfheartedly do that (with my copy of Dr Bernstein's Diabetes Solution) and we've both been sticking to the plan (more or less) and our blood sugars (and our weight) have been dropping.

So we're both doing better.

In all my life, and it's been reasonably long, I never thought that I would be on so many drugs just to control headache and neck pain.

And deal with other issues.

There's the thyroid disease, constipation, diabetes and life's little pleasures fulfilled by Levitra, which is entirely entertaining.

A normal dose is 20mg and I take 2.5mg which shows you how sensitive my system is.  I've ordered a refill.

Yea, you get old.  You want the good stuff.  I can't drink anymore. I have to do something!

Starting exercise at a real gym

I've started to exercise at a real gym.  It's the local Kinetix which, I think, is less than a mile away. 

I started last Thursday with 12 minutes on a treadmill.  I increased the incline to 10% and lowered it when my butt muscles started to burn, and put it back up again when they felt better.

I didn't do much the first day, but just the treadmill was enough to drop my blood sugar from 129 to 105 30 minutes after I got home.   If I keep it up my insulin resistance will go down.

It's a nice gym.  It has nice new machines, and they re-upholstered the old machines with new leather, or vinyl or whatever that stuff was.  The machines look better quality than the ones at the gym that closed at the same location.

I've been sticking to the 10 minute treadmill regimen (if you could call it that) and then adding resistance training on those fancy new machines.   I managed to injure my shoulder some months ago with free weights at home, so I am having some difficulty doing some of the weights.   But I'm thinking if I strengthen the muscle it might do better in the future.

A little further along.

Well, a lot has and hasn't happened since I last posted.

I had a sleep study done, and since they didn't rush out with a CPAP machine, I'm hopeful that I don't really need one. 

It was, nevertheless a peculiar experience.  Let me say that I don't enjoy sleeping all wired up, and the glue in the hair does not come out for a number of days.  I don't like having an oxygen helper tube taped to my face either.

I took enough drugs to make sure I fell asleep, and woke up early.  I was uncomfortable.

It's over, thank goodness.

Otherwise, the headaches (or the lack of headaches) are getting progressively better.  The Zonisamide is working (took it long enough) I was on a full 200mg/day dose for about 2 weeks when the nausea and lack of ability to concentrate got to me and I dropped it down to 150mg/day. 

That seems to work. 

I have headaches late in the day, sometimes late in the afternoon and not much at that.  I'm also more relaxed. 

Great not being wired.

Nothing that a Little Drug Couldn't Cure

I've been on the full dose of 200mg Zonisamide per day for over two weeks now and I'm comfortably floating away. Higher than a kite?

Well, that's a little bit hyperbolic. But it's just that it is so relaxing.

I like it, it's working on my neck and my back feels better.  Which is a bit of a problem when I need to focus and work on one of my programming assignments. 

There have been memory glitches, and some slowness of mind.  Not all of which can be attributed to Zonisamide.

I'm an old guy.  Suffering from post-chemo brain rot.  What am I to do?



  

Zonisamide to the Rescue

I'm up to 200mg of Zonisamide a night, and the nausea is trivial.  Feeling much better, with headaches brief and infrequent.  I do take a Skelaxin almost every day because like most treatments, even this one is not consistent.  

At night when I want to fall asleep and not feel any pain I have some Tizanidine 4mg tablets that I can take. 

Between the Zonisamide, Gabapentin, Tizanidine and whatever else is in my little grab bags of pills, I can sleep and not be disturbed by headaches ever again.

Since I've been in remission for over two years, the two remaining problems have been the headaches, and  the fact that I don't have a great deal of energy.

I think I've got the right mix of drugs to deal with the headaches.  August 2nd I have a sleep study to see if I have sleep apnea, and sometime later I'll have a session with the Anesthesiology and Pain Clinic at UNC and they can look for little nerves to zap in my neck.

That should pretty much fix the neck problem.

The energy issue is that I have perhaps not been healing because I have not been sleeping well.  The Gabapentin helps with that, but the sleep study, if I find that I have sleep apnea will help a great deal.

I don't look forward to being connected to a machine for breathing at night.   How ghastly.

It is working

The Zonisamide is working.  I doubled the dose on Friday to 100mg (two 50mg capsules) and the nausea is not what it was.  It's not only working but I feel better (as in not so sick to my stomach). 

Of course at this I know better than to eat anything that might upset my stomach after dinner.  The Zonisamide does give me a feeling like my stomach is going to complain and if I only ate something it would feel better.   Not a good idea to give in to that feeling.

So I don't feel a headache until the afternoon; and today it was until 6:00PM.

I do take a Diclofenac 50mg in the AM whether I need it or not. Can't be too careful.

An Anti Convullllslsssannnnnttttt

I've been taking Zonisamide from June 22, which is just under one week.  Friday I double the dose.

So far I've gone to bed feeling sick two or maybe three of those days in a state of real discomfort. Basically stomach upset.  Now tonight I feel OK, I think so long as I don't have a very heavy meal at night and am careful to take the drug after the meal then I'm OK. 

I've felt a little discomfort off and on tonight but nowhere near the amount I had last night or the night before. 

At this point I have to persevere with the therapy, and it may work eventually, but I think the real success will come when my nerves get blocked at the Pain and Anesthesia Clinic at UNC; and perhaps if the sleep study I am scheduled for in August yields results.

I have some Zofran left over from my R-CHOP days; maybe I should have some of that next time I take my Zonisamide.   

Well, It Does Seem

It seems the headache gets better, and then comes back again.  It came back at the usual time today, but not as bad as usual.

Tomorrow I give up the Meloxicam and take up the Diclofenac when the headaches strike. 

When you have a symptom, it's hard to tell if it's from the drugs for something else.  I've had sinus headache today, and now for that matter, but is it a drug symptom?  Feeling nauseated off and on and my stomach seems easily upset.  That could easily be the Zonisamide.

Actually, the lack of appetite from Zonisamide would be a good thing for me, I might lose weight. I've been a little paunchy since the chemo.

Oddly, I've been on a low carbohydrate diet because Mary's doctor read her the riot act about her eating habits.  My blood sugars have dropped from 150 in the AM to 112 and once a few days ago 101.   Mary's are coming down too.  Good for us!

I got up at 4:50 this morning when a cat decided to wake me up, and didn't go back under the covers at all so I am very tired now, and not feeling so well either.

So good night.

Too Early to Say But

Yesterday, and the day before I woke up with a headache, and except those times covered by Skelaxin, I also had a headache.

The headache seemed to be everywhere except my neck, and I think the Meloxicam kept my neck from bad cramping and the pain that would go up the long muscle in the back of my neck.

So the headaches feel different.  They seem like real head headaches now.  

Naproxin did the same sort of thing to me, moved the headache up to the crown of my head. 

I've had my last Amerge (Naratriptan) today, and tossed the little cardboard and tinfoil thing that it came in out.  I'm wondering how I will feel tomorrow without it.

I have off and on throughout the day felt relaxed; much more so than normal.  My appetite has been suppressed, and I only had a few raspberries and cherries for lunch, with a peanut and chocolate snack later in the day.

So after waking up with a headache today, I took a Skelaxin and eventually a Meloxicam, and I have not had a headache since.

It's about 5:20 in the afternoon, and I think I feel one coming on.  It's late, it's about time it got here.   

The Miraculous Drug

I should say more about treatment I've been going through and the affects it has had on me and my neck/head pain.   Initially I stopped drinking coffee and took one form of Diclofenac or another to deal with the withdrawal headache.

I've noticed how medical people pronounce Diclofenac differently than I do.

Then I started on the Bridge which is Meloxicam 7.5 mg twice daily which is an NSAID and the benefit is that it deals with the arthritis that is in my neck, and for that matter other places.  My hand feels better.

I was also prescribed Amerge (Naratriptan) which is a migraine reliever.  It seems the nerves from the back of the neck (where my problems are) rise up to the part of the brain where migraine headaches originate.

The first Amerge pill I took gave me such a feeling of well being and giddy joie de vivre which unfortunately wasn't repeated by the second pill I took that day.

The Meloxicam keeps my neck from feeling that it has a severe muscle problem that results in pain.  Instead I have headache that comes and goes.  For this I take one, two or three Tizanidine 4 mg. which is a small oval white pill which is a muscle relaxant that can cause drowsiness.  I only take this towards the end of the day when my mental capacities and driving skills are no longer required.

I took Skelaxin this morning because, like yesterday, I woke up with a headache that seemed to accompany a deep unpleasantness in my neck.  I am not used to waking up with a headache; and I can't say that this regimen has helped my headaches anymore than the daily Naproxin and Skelaxin that I took only weeks before.

Where I have noticed improvement is in the Gabapentin and last night's dose of Zonisamide which left me feeling very relaxed.  That is a marked improvement over my usual condition, which is a tenseness bordering on paranoia.

As you probably know,  Gabapentin is an antispasmodic which should aid me in having a truly deep sleep, which I believe it does.  Zonisamide is an anticonvulsant which is normally prescribed for epileptics and after the first bit of grogginess which caused me to fall asleep, made me feel very relaxed.

I'm just waiting for the Zonisamide to build up in my system, that might help with the headache.
  

Gimmi Dat Drug

I popped a capsule of Zonisamide for the first time a couple of minutes ago.

It's an anticonvulsant to go along with the Gabapentin which is an antispasmodic.  Oh how I love to jive and shimmy; well, no more.

I wish this would have been around for my sister Velma when she was thick in the midst of her grand mal seizures.  Well, too late for her.

This and the many other drugs I take are for my headaches, and I am very glad that they are being addressed.   I've had fun with drugs before, I have very fond memories of R-CHOP and how absolutely horrid it made me feel, I would lie to myself and say that I loved it because it was decimating the cancer.   There is nothing quite as debilitating as going for a walk which used to be long realising that you simply don't have the heart muscle to continue. 

My other favourite, lenalidomide was a real trip, and the rather irritating and painful side effects resulted in the headache and stiff neck which I am so desperately trying to deal with now.

I wonder how the Zonisamide will affect me?


 

Missing the Morning Stimulation

Well, I stopped drinking coffee on Thursday.  This doesn't have quite the withdrawal problem that quitting smoking does.  But I love my coffee, and I can't even drink tea.

That with the Gabapentin 800mg, and the occasional dose of Diclofenac/Cambia  is working already and I haven't even gotten to the high powered drugs yet. 


Gabapentin is an anti-spasmodic and it is given to increase the deep sleep that allows your body to heal.  It is a wonderful thing.  I have been getting such good sleep. 


As a result, this morning, my shoulders and neck feel more relaxed than they usually are.  My neck doesn't have the usual crackle, or as much of a crackle when I move it in certain ways. 

 

Searching for the Cure

I stopped  by the Headache Institute and had a long conversation with a Physician's Assistant which was, I think, a rather pleasant way to spend some time.  Once I actually started talking to her, things went pretty well.   She had good interviewing skills and put together a history, gave me what looked like a neurological exam and found the places on my feet where I don't feel so well anymore.

I seemed to be spilling blood sugars because I asked for water and seemed to need several bottles, and of course a couple of trips to the rest room.   And I thought I was being so good with the low-carb diet.

She presented her work to the doctor and that took about half an hour, but they had a very good little book about nutrition by the numbers for free which described so much that I wasn't bored.

I also drank more water.

When she got back to me she submitted over half a dozen prescriptions to my pharmacy, and I found them on my email and went over to pick them up.

One of the drugs is Gabapentin which will help me get better quality sleep, although it is an anti-spasmodic.

I took some about 40 minutes ago and I feel like falling asleep already. My neck feels good too.

I have not analyzed what all the drugs are or what they do, there are NSAIDs, some of which will help me overcome the headache that I am sure to get from quitting coffee which will be very difficult.

That's that old nail in the forehead kind of pain.  Not soon forgotten.

It appears that my headache is like a memory that my brain cannot get out of my head although the doctor didn't use those words.  He said the nerves that line the C2-C4 vertebra (where my little friend was located) lead to the same place in the brain where migraines come from.

I have not entirely digested the sheet of paper that describes how to use the drugs, without which I would be completely lost.   More tomorrow or the day after when I've had time to type that information into a word document and actually digest it.

I think I will be emailing some questions to the young woman who took my life history down.

A little Zantac will do Ya

Yup, the Aleve makes me sick even in small doses.  All though the night.  Of course last time I felt nauseated like this (aside from chemo) was when my liver was on the fritz in about 1983.

And was forced to stop drinking alcohol.  Obviously a blessing in disguise.

I've started to take Zantac on a regular basis.  AM and PM 150 mg dosage.  This is working so far.  I'm also taking one Aleve in the AM and one in the PM.  I don't want to push my luck, but it seems to be working.

The Aleve seems to take more of the edge off now, but I medicate more with the Skelaxin too.

My neck still makes funny noises when I move it in some unusual way, but it's not as loud.

So I am doing OK.

Headache Institute

We have heard from the Chapel Hill Headache Institute and I called them yesterday.  I have an appointment for June 13th with a physician's assistant because I could not get in to see the doctor.

Why is it that whenever I type the word 'doctor' I want to Capitalize it: Doctor.

I'm happy to see her.  Frankly, I feel more comfortable talking to a woman.

I'm doing the minimal Aleve dosage of between two and three a day (not two at once) and that seems to be working out as far as nausea is concerned, it seems that over time my neck is feeling better. 

As long as I stay on the Aleve and dose my sel. 

I went off on my 'drug holiday' and my neck started to stiffen up.  I went back on at a lower dose and it keeps the worst symptoms away. 

I started to work on finishing a history of my headache and a drug list and I'm not quite done.  I plan to mail them in to the Physician's Assistant.

It is a few weeks away.

My Body is not Living up to its Fabulous Reputation

My body is not living up to its fabulous reputation as a drug tolerant machine.  It seems two Aleve twice a day is a bit much.  I didn't feel well.  Nausea, upset stomach.  

My neck was doing so much better.  Well, maybe not that much better but it was improving and so was my back.

So I had an Aleve holiday or two, and I am building back up to two, maybe three pills a day.  I just need more Skelaxin.   

I had an Aleve this morning, one yesterday late in the day and I am about to take a Skelaxin.  Maybe an Aleve too.

Of course there is the possibility that my stomach has become as "twitchy" as my neck; and I'm just way too sensitive.

I'm a little leery of taking too much of the Skelaxin since it has side effects too.  Headache, I think is one of them. 

Déjà vu all over again (to steal a phrase)

It's been a while since I reported on the state of my headache and twitchy neck pain, so I thought I would describe the current state of the issue.

I'm taking two Aleve in the AM and two in the PM which takes care of a lot of the neck problem, but it moved the headache up to the crown of my head, and I feel sharp bits of pain on the sides of my head.

Rather like a miniature whip, you feel the ouch and then it's gone. 

I asked my doctor if he would be willing to prescribe Skelaxin, since that takes care of the problem temporarily, and he did.  I now have enough that I can take as much of it as I need, instead of carefully parceling it out so that it will average one pill a day.

I remember when this small disaster began back in the summer of 2009, I was taking 4 Aleve a day,  4 Skelaxin on the side and in the evening 3 Carisoprodol (Soma) spread throughout the night as I woke up from the pain.

Things are much better now, but sometimes I forget to take the Aleve in the AM (or PM) and I wonder afterwards if I took it.  It's not a good idea to give myself a double dose, so I let it go and take the next one on schedule (if I remember).  

But considering that I will be feeling it by then, that's not such a problem.

Let's Jiggle the Dosages

I sent my doctor an email that described the schedule of the 3 Aleve I take a day and saying that the headache comes back later in the day. 

I mentioned that I was about to take a Skelaxin and asked him if he had a better alternative?

He replied  and suggested that I up the dose of Aleve in the afternoon and cautioned me against taking more than 4 or 5 in a day.   He asked me to let him know how that worked out.  

He also wanted to know how the Skelaxin was working.

So far I can say, except for being drugged all the time, the Aleve several times a day has been the most relief that I have felt.  My headaches are there later in the day, maybe from mid afternoon on, but I'm feeling much better than I did when all I relied on was the Skelaxin.

The Aleve helps with what I think is arthritis in a couple of fingers of each hand, swelling in my left hand has gone down since I have been taking it.

It's also nice not to need so much Skelaxin. 

Skelaxin and alcohol are contra-indicated, although I'm not sure if death is a side effect of that interaction. I will be able to have a glass of wine.  Or a shot of whiskey at some indeterminant  time in the future.

My limits even then are severe.  Half a glass of wine, and perhaps a thimble of whiskey.  Not much.

Maybe I should

I have been thinking that I should change the name of my blog to "My Secret Headache" although the headache is more or less from the cancer, and aftermath. So it is appropriate that I talk about it here.

As per my headache status:  I've been going with the three Aleve a day now for several days, and yes I still have a headache. My neck muscles don't have the nasty twitchiness that they used to, and I don't have the direct muscle pain that I had at the back of my head, but the headache is still there, only it seems to be from different muscles being irritated.

It has a character that seems more like what I imagine a tension headache would be.

I'm not entirely sure if the nausea I have been feeling off and on the last few days is from bad food choices or the Aleve.

Half of a really serious pain killer has the effect of staying with me the next day and slowing me down, so I don't like that.  The Skelaxin, although it's not as useful as it used to be at least takes the pain away and leaves my head functional for work.

I have asked my family doctor to manage my headache at least until I can get into the Headache Institute where I hope I will get some relief.  He tells me there are options; which is what I think I need. 

Some Good News

I stumbled on something that has been very helpful.  I started taking Aleve throughout the day.  One in the AM, one in the mid afternoon and one before I go to bed.  That seems to be enough to get rid of the really bad headaches.  I have been doing this for several days now, and It's been working.

The headaches don't go away but they are much more tolerable.  Small bits and pieces of pain instead of the feeling that I've been whacked in the back of the head.

I haven't dealt with a lot of stress yet, so I don't know how that will affect it, but so far so good.

I should be overjoyed, but I don't want to jinx it.

Cold to the Bone Chill

I think I had my last PET scan in October, and since that time I seem to have been doing pretty well.  Mostly I've been trying to find a solution for my stiff neck/headache problem which is fallout from having a tumor in my neck and then being treated by a drug that has muscle cramps as a side effect.

My oncologist says the Revlimid I was taking doesn't have headache as a side effect.  Sure, except my neck.  

In pursuit of a pain free experience of life, ever hopeful that I can find a "cure" I applied an NSAID topical cream to my neck, and my neck felt better.  But then I started experiencing side effects.  Nausea. 

I have over the past several weeks experienced a chill.  It starts in my head and goes down my spine and is disconcerting.  It's the kind of chill that you get just before you vomit.  Like you are just experiencing sudden cold.  No goosebumps; just cold.

Well, last night it was very bad, but the feeling went away.   It was somewhat more intense than it had been the last two times I felt it. 

But why do I get it?

Let me speculate:  I took an NSAID the last two times it happened, although much earlier in the day.   I had not taken Skelaxin for a couple of days.

I wondered if I had been sensitized to NSAID side effects, so just using something that used to be no problem would result in nausea and a very strange feeling.

Could it possibly be a withdrawal symptom for Skelaxin?

Blurp! Just a little Tipsy last Night

I enjoyed a glass of Malbec last night.  It was an old bottle of Castello del Diablo left in the refrigerator for at least six months which, if you like cheap wine, is one of the better ones.

It is Chilean, which helps account for the price.

Maybe I did have a bit too much, but my liver seemed to take it pretty well.   

It's the rest of me that isn't feeling well this morning.  Bit of a headache, neck getting twitchy.  Just like that slightly hung over feeling I used to experience regularly in my college days.

I took a couple of Advil a bit after breakfast and am waiting to discover if my stomach will start to feel upset after a while.

As you are probably guessing by now I am looking for OTC drugs that I can use to supplement the Skelaxin which is a muscle relaxant.

It has been a hit or miss proposition.

Drugs are burdened with side effects, which are unclear until the drugs are taken for a while.

The only prescription topical NSAID I tried made me sick even at a low dose; and as a result I studied how that class of drugs works and discovered the peculiarities of prostaglandin suppression.

I'm looking for some topical Ibuprofen right now which I expect to work better than the Aspercreme, but not work so well that is suppresses my prostaglandin production to the point where I get an upset stomach.

Well, it might work.

So I will probably revert to a Skelaxin in a bit to deal with the stiff neck and headache I have today.

I have emailed my family doctor, who I see on Wednesday to help me manage my neck as a tension headache.

I wonder what kind of treatment he'll come up with.  I read about tension headaches on the web and the article said that one of the treatments, aside from a frontal assault on the pain with wonderful drugs, are some varieties of anti-depressants.

Just looking at the caveats of those kind of drugs, I might not be able to take NSAIDs with them because of the potential for bleeding problems. I can feel the potential pain from that already. 

I'm wondering how a drug like Paxil, a GSK antidepressant will make me feel?

I've been thinking that I'm probably a mentally deficient depressive anyway, maybe I'll get cheered up with that drug.

Of course the fact that some drugs have strange effects on my central nervous system that they don't on regular people leads me to wonder what sort of mental side effects I will develop.

Maybe I'll become supper happy and really piss everybody off.   Nothing like a personality change to give your friends the willies.

It has been long enough that the Advil had kicked in and my headache and neck feel a bit different.  Advil doesn't work very well on this headache, but it does take the edge off.

We'll see how this works.

Oncologist Visit Today

It was a fun day, visited my oncologist and had a conversation about my general condition and of course, my neck pain.  He basically said that my headache does not appear to be the result of tumor, and headache isn't listed as a side effect of Revlimid, and since the neurologist thinks the stenosis doesn't matter: I have a tension headache.

I am amazed at how often diagnosis are ad hoc.

At this point I seriously regret having participated in the Revlimid study.  The stuff really did a number on my neck and my doctors talk about it like it just isn't so.

In terms of general condition, I'm doing pretty well.  My stamina is somewhat less than what it should be, and of course my neck hurts, but aside from those two things, I'm OK.

I got a copy of my blood test and the white cell count is 4.7 which is lower than it used to be before chemo, but now is considered normal.  It's just .2 over the normal threshold since normal is 4.5 to 11.0.

For some reason my chloride level is just 2 points under normal.

My Absolute Lymphs are just a little low, and my doctor said that's normal, there is a long recovery time for that after chemotherapy.

He suggested that I should have my family doctor manage my neck pain, at least until I get into the Headache Institute in Chapel Hill.

What do you do for a tension headache?

I tried some Naproxin the other day and I felt some of the nausea coming on.  Maybe after chemo my prostaglandins are not so great.

Back to Basics

The Nausea got worse and was persistent.  I had several days of worsening upset stomach.  That is a listed side effect of Voltaren Gel so I stopped applying it to my neck. 

I have been off it for about a week.


The nausea cleared up after a couple of days without the Gel, but what do I do about my neck now?

I did not feel like going back to Aspercreme since Aspirin has the same problem.

NSAIDs suppress the production of Prostaglandins which are important in the stomach lining.

It appears that the more effective the gel/creme the more it is likely to cause a problem.

I decided to go back to Penetrex because it seems to work.  After the Aspercreme and the Voltaren Gel I'm surprised at how well it works.  I'm hoping that since it's "natural" it won't cause any major problems.

Over the last several days, I have had ample opportunity to experience the genuine headaches without a drug to ameliorate their effects.  It took a while for the stiffness and pain to come back.

The Penetrex helps a lot, but some pain and stiffness still leaks out.

I take Skelaxin for that.

Singing the wonders of a new drug.

Voltaren Gel has been a real relief.

I've been using it off and on for about a week, and it has greatly reduced the soreness in my neck. 

I applied it before I went to work on Friday, and after about three hours at the office the headache in the deeper muscles started to come through.

Today I noticed a little nausea, and since this is a COX-2 NSAID it may cause some stomach upset.  Granted, I don't eat it so it has to do it from the drug that makes it through the bloodstream to the stomach lining.


So I begin to wonder if I need to take less of this, even though I am taking a small dose.

As I approach the day when I will go to the Headache Institute, I am learning more and more about my intractable headache.

Believe me it is a pain!

It took the pain away!

I applied some Voltaren Gel this morning and it got me though most of the morning at work pain free (about 3 hours).

Pretty good for some gooey stuff.  

The normal application is two grams, and there is a flat plastic measuring tool that measures out two grams, and I know the amount of this stuff that I'm using doesn't come close to that.

I feel optimistic that I have something that will help.

Let's talk about progress.

We are into April and the middle of the month will mark the two year anniversary of my last R-CHOP infusion.  Sometime in the second half of April 2010 (or perhaps earlier) I became cancer clear.

Now that it's a couple of years and I haven't had a relapse, my odds of having one are lower than they were.

Well, I don't feel any different.  But it's a pleasant thought.

I'm over the cancer.  But I'm not over chemotherapy and I include my three months of Revlimid in that.  I don't know which was worse, but the R-CHOP was of longer duration.

I think the Revlimid did something to my neck muscles.

I'm not as terribly exhausted as I was when I was on either R-CHOP or Revlimid but I get tired a lot.   On Tuesday I visit the office and allow myself two hours, and it really tires me out.

I find a comfortable spot when I get home afterwards and take a nap. 

My neck still has problems that cause headaches, but I have learned new ways to ameliorate them.

I noticed that the area where the neck indents just below the skull on the right side hurt a little.

Actually kind of sore to the touch deep below the skin and I had the idea that I had inflamed muscle (if that's possible).   So I went looking for anti-inflammatory creams to apply and started using Aspercreme and then Penetrex with it to relax my neck.

It sort of works and just about the whole day the headaches are reduced to the point where they're not badly irritating.  I still feel something in my neck that doesn't feel right, both the quiet grinding and snapping sounds my neck makes when I move it certain ways, and the deeper muscles that still are stiff and waiting to tense up.

The surface twitches and twangs with bits of pain shooting up my neck are greatly reduced.

It has occurred to me that putting Aspercreme on my neck and having it absorbed through my skin is perhaps not something I should do for too long.

I've asked my doctor to prescribe a topical NSAID for me to use and he gave me a prescription for Voltaren Gel which has it's own problems, I'm sure.

There is no drug without unpopular side-effects.  I wonder how that drug will screw me up?

It's a highly prescribed drug, so they don't have it at the drug store.   Maybe I could get some from AMAZON?

A couple of days without serious drugs.

I managed to stay off the Skelaxin, and that more serious stuff for over a day.  My neck got a little twitchy and seemed a bit stiff when I went out for my walk. But I haven't had a seriously bad headache yet.

I'm applying the Penetrex and some Aspercreme and so far that's been working, at least to keep the real nasty pain away.

I do feel a few uncomfortable twinges in some of the deeper muscles.  

Paperworked over.

Well, the paperwork for the Headache Institute is done and in the mail.

Thank goodness, it actually gave me a headache!

Naturally, I forgot to put something in, my list of supplements and DRUGS, but they'll call one of these days and they might ask about that.

Presumably once they get the stuff they'll call and I can make an appointment. 

I am so thankful that it is over, although, given my handwriting, they might want me to redo it.  I put several printed pages in so they could contact my many doctors, or send them a report afterwards.  What I wanted to very be clear about I put on a printed page.

All except for that list of drugs. But it is all printed out (except for the ones I forgot) and in a convenient spot for when they call. 

Or I can take it when I go in.

What a wonderful idea it was!

I woke up with a nasty headache this morning.

It was the kind that I can feel along the vertebra of my neck, so when ever I moved my neck I felt little twinges of pain.

Yup, stopping the Skelaxin was a real good idea.

One Advil, and half a Skelaxin later I felt my neck start to recover.

After I fed the cats at 5:30 and breakfast I had another Advil and another half a Skelaxin; and eventually I felt better.

I have a couple of refills of Skelaxin to go, I'm concerned that I'll run out before I get into the headache institute and can get this fixed.

Once more into the breach!

For the last several days I have been skipping the Skelaxin.

After going through a few days of funny feeling muscle cramps in my left arm, I'm actually feeling pretty good.  Sometimes.

I've been applying Aspercreme in liberal amounts in the hope that the problem is that my muscles are a little inflamed.  It seems to work on the top layer of muscle, but doesn't get down to the muscles deeper and under the skull.  Or the muscles that drop down to my back, but I haven't really been applying it there.




Right now I have some muscles that are sensing a new flexibility and others that are cramping up.

I'm thinking for tonight that I can avoid the Skelaxin if I load up on some pain medicine.  Or maybe I should just take the muscle relaxant, after all, it's my muscle that feels cramped.

I was looking around for some more potent anti-inflammatory to apply topically when I came across something called Penetrex, which is a non-prescription anti-inflammatory and I hope it works better than the Aspercreme.   

It hasn't come yet, but it's supposed to work on the kind of tissues that I'm having a problem with.

Wish me luck, why don't you?

Paperwork

In preparation for meeting my new doctor (the next in a long list) I have been filling out the Questionnaire.  Getting dates for things like lumbar punctures, CT scans and MRIs when I came across this question: "How often do you exercise?"


That was after the section on social history which encapsulates: education, salary level/household income, occupation, caffeine use, eating habits and a few others.


Why don't I just supply my whole life story?

Looking more deeply into the paperwork it looks like I'll be coming close to doing that. 

Since my neurologist said that my daily headache  is probably just a muscle thing, I should find a way to deal with this other than Advil and Skelaxin on a daily basis.

She's right of course.

But I had no idea there would be this much paperwork to fill out.  

It is a real headache!

What a Headache?

I went outside to bring in the mail and found a large brown envelope from the headache institute to which I have been referred. 

Just a little moist from last nights rain.  The envelope it was on top of was out and out wet.

These things happen. 

The rather large questionnaire was damp in a few spots but otherwise OK.  I am letting it dry after paging though it.

I need to dig out information about the neurologist who referred me; dates on MRI's and CT scans.  But the questions asked assume the scans were about headache/neck pain while in reality they were about lymphoma.

It's a long questionnaire full of little boxes to check and questions about drugs and a whole section that looks like a questionnaire about whether I'm depressed or not.   I suppose it's efficient; it's also a pain.

I will be introduced to another doctor.   Not something I enjoy.

I would like relief from the daily headache and get off drugs if possible.  Or I would like better drugs.  Ones that really work.     

Drugs that I can add to the list of the many drugs I take, just to get by.

Waiting for relief..

For the last couple of weeks my headaches have been pretty mild and somehow I thought I was getting over the bad pain.


I've got a very bad headache at the moment and I wonder, why did it hit now?


Fortunately I can feel the Skelaxin and pain medicine that I took almost an hour ago kicking in and I am beginning to feel a little better, but there must be a better way to deal with this long term.

I've been thinking about the Carolina Headache Institute which is, I believe, the place my neurologist referred me to.   Although they haven't called me yet.

From the web page, it looks like it focuses on all kinds of headache, migraine or cluster headaches for example.

I'm a little concerned that my neck pain may not be quite their bread and butter since it's mostly muscle pain (so my neurologist said) in my neck.

When my headache is bad I feel like I'm suffering the after effects of being hit in the back of the head with a baseball bat without having to endure the initial thwack!

It's those muscles at the back of the head, especially on the right side just behind and beneath the skull.


I hope they can help me.  I'm skeptical, but it would be nice if they could do something so that I wouldn't be stuck taking muscle relaxants and pain pills for the rest of my life. 

A visit to the Neurologist

It has been well over a year since I've seen my Neurologist.   She had changed her hair style and was striking.  We hit it off on the right note when she came to get me and I told her that she looked different, she laughed.

I am however always stymied when a doctor asks me why I am seeing them and I have to start describing my symptoms. 

As it turned out I wasn't in great pain when I was there, I was rested.  I had to wait until I got home and the pain in my back and neck had time to gel.  Pain medication followed.

As I figured out when I went off of the Skelaxin for a while just a few weeks ago, the drugs become less effective as you use them more.   Some of their side effects might start to surface as well. 

The point of this is that over the long term drugs (I have at least two large bottles of Advil to help the Skelaxin) are not good.

So my attractive doctor is referring me to a headache institute right here in Chapel Hill, not associated with UNC Hospitals where they may have therapies that will allow me to come off the drugs.

She suggested one possible therapy which is injections of Botox in my neck muscles.

It would be wonderful if my stiff neck and headaches would go away.  It is almost too good to think possible. 

I could have a glass of wine again without checking to make sure I hadn't taken some drug where alcohol was "contra-indicated".

Maybe the pain will be "contra-indicated".


 



 

Almost Monday

Monday will roll around in the morning and I am wondering if I should shower and then work, or work and then shower.

Although I start work at 8:00 AM or shortly after I usually get up about 7:20.  Since I have been trying to sleep more, and be more rested I've been getting up later.

The schedule goes something like this:  I am sleeping in the big stuffed leather chair again because I hurt my back.  Tipper, one of our dear little kittens (not being sarcastic here) wakes me up whenever she thinks it is time for breakfast.  Since she can't tell time this can be as early as 2:00 or as late as 4:30.  This morning she got me up by making some ripping noises with the newspapers next to Mary's computer.  I felt so relieved, I looked at the clock and it was only 5:10.  I got some sleep.

After I fed the kitties (at 5:30 AM) I wrapped myself in my old yellow blanket and slumped into that same big leather chair for another three hours.

I was well rested today. 

I'm semi retired and I don't think my bosses care when I start work.   I could sleep later.  It's just a question of convincing myself that it's OK.   And I do need the rest.

I am planning to put in six hours on Monday so that I can reduce my hours on Tuesday when I plan to go in.   I do that because I become very tired once I go in.  I have issues with functionality the following day.  I have periods of being brain dead in the morning.

Not a pleasant side effect.  I'm not over the chemo yet, and I have no clue what to do about it.

A little work never...

I went to work today, just in time for a 9:00 programming project meeting.  The Business Analyst, Systems Analyst, Tester and the Programmer (me) get together to see if they all have the same opinion about what the project is supposed to get done.

I was almost done with the coding, but it was good anyway, and we were all on the same page so the project went ahead as planned. 

It was fun to be at work and after being there for close to an hour I felt my endorphins kick in and I relaxed.  This is in contrast to the last time I was in and my adrenaline glands kicked in and I felt stressed.

So today was better.

I was busy throughout the two hours I was there; I entered at 9:00 and left shortly after 11:00. 

Bone tired.

One good thing I noticed is I didn't eat all that time so my stomach felt empty.  But then I got heartburn and I am reminded I need to bring some Tums next week.

So about two hours in the morning is about all I can last at work before I start to get  tired.

Better than the week before when I put in 3 hours.

I will try again next week, and we can see how that goes.


FYI got a new appointment for my Neurologist March 9th at 2:20.