Update posted 23 September 2013
Susan's visit to Dr. Jon Gustafson on 16 September went well. He had in hand the letter we sent him 10 days earlier, outlining the problems Susan was having with side effects, especially those associated with venlafaxine.
We initiated a discussion of the double shot of anti-depressants1 Susan is taking, and Dr. Gustafson agreed that we should get rid of the venlafaxine (Effexor) if it isn’t necessary to regulate Susan’s “mood”. That drug was first prescribed several years ago in a migraine treatment program under another doctor. Dr. Gustafson wrote a prescription for 75mg tabs, half of the old dose. He said, “Going from 150 to nothing would be a little too drastic, so we’ll see how it goes at 75, and if it goes okay we’ll reduce it further and eventually eliminate it altogether.”
We told him a three-month gap between appointments is too stressful, given the drastic effects of the treatment on Susan's mental and physical condition. He obviously understood our concern, and he set the next appointment at six weeks.
Susan improved significantly after we moved the 150mg venlafaxine to an afternoon dose on 6 September, shifting it away from the heavy load of medication she takes at bedtime. The doctor approved of that change. The headaches have been substantially fewer since then, and Susan showed some cognitive improvement.
On the weekend before the doctor visit, Susan was entirely headache-free — Friday, Saturday, Sunday — and experienced only a mild headache the morning of the appointment day. That was her best run of no-head-pain days in a long time, probably at least a year.
Her cognitive and general behavioral improvement in the week leading up to the appointment was remarkable. Mentally, she seemed nearly back to her old self much of the time. Memory function seemed nearly normal.
In the past week, Susan’s personality and alertness returned, for the most part.
Physically, Susan still shows the effects of her 9-10 months of almost wholly sedentary lifestyle. She still is lethargic, at times. She is weak, lacking endurance and still at risk of falling. She has trouble going to sleep at bedtime, which is at least partly caused by her dearth of physical exercise.
On 21 September she began to experience a migraine, and it continued through the night. The next morning she felt bad, and she took some heavy-duty OTC painkillers to sleep it off.
So the enemy is not conquered, but the outlook has brightened in the last few weeks.
1 Susan is taking 200mg of amitriptyline daily. Dr. Gustafson told us that amitriptyline does not have much anti-depressant effect at the lower doses Susan was taking earlier in his treatment program. He implied that Susan had not been receiving a significant double dose of anti-depressants until she stepped up to 200mg daily of amitriptyline in May. Dr. Gustafson was encouraged by the reductions in headache frequency and intensity. He said if that kind of progress continues, the next phase of treatment will be to start reducing the dosage of amitriptyline.
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