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!