Friday, 11 January 2013

Some conclusions

It seems to me that I'm thrashing about in the wilderness of not knowing what drugs do help and what drugs don't. 

  • One thing seems to stand out: amitriptyline at a 50 mg dose does really seem to help me sleep comfortably. 
  • Furthermore using voice recognition software as I am really is good for making me speak clearly. Its really good speech therapy!
  • I remain suspicious of L-dopa: I don't think I've got the dose right. Reading around the literature makes me feel that the less dependent I am, the better. Increasing the dose seems to induce side-effects – dyskinesias -- after a year or so of  use.
  • Pramipexole seems to be a little or no value in my case. Does that mean that all dopamine agonists are of no use in my case? What should I try others?
  • Doctor Mclean has referred me to the pain clinic at the Bangor Hospital and I filled out a long questionnaire from them about what is troubling me. So this is an avenue which may become useful to me: learning to deal with my pain. The clinic is multidisciplinary and even includes an acupuncturist which I should be happy to try if it could help.It continues to be true that if I undertake hard physical work, I generally feel better rather than worse afterwards, but the aching muscles soon return.
  • I find that lying flat on the floor in the Pilates rest position for 20 minutes is very resuscitating. And using the practice of whole-body scanning, picked up from meditation procedures, in which I systematically relax muscle groups is helpful. Trouble is within in a few seconds, many of the muscles re-tension. My guess is that much of the pain is due to major muscle groups pulling against each other (because of incorrect messages from the brain?) So it is not surprising that I feel as if I've climbed a mountain the day before. I haven't, of course, but my muscles think I have!

Diary: January 2013

Continued from 2012 diary
2/1/13: still sleeping well but very tired-feeling in morning. Not wanting to get out of bed. So reduce amitriptyline dose to 1×25 mg +1×10 mg (35 mg) at bedtime. He is amitriptyline causing me to put on weight? Up to 79 kg from my usual 75 kg!

3/1/13: blood pressure reading taken before breakfast
Lying – 105/57 64 bpm
sitting 133/78 64 bpm
standing 120/92 86 bpm

6/1/13: start taking 200/50 mg SR L-dopa, one at night to see if better than 2×125 mg per day.

8/1/13: pain same as usual. Reduced dose of amitriptyline to 25 mg. Awake more often but generally good sleep. Rather more 'doddering' than hitherto but can make myself walk normally with swinging arms. Is it too much or too little L-dopa?

9/1/13: worst night for weeks though not so bad as they used to be. Returned to 2 times daily L-dopa as SR type doesn't seem to agree with me. At night, 1×25 mg amitriptyline only. No L-dopa or clonazepam.

10/1/13: Poor night. Cramps and aching muscles and interrupted sleep. Take 1×125 mg L-dopa in morning as usual. 45 mg amitriptyline +2 clonazepam as usual.

11/1/13 much better night's sleep. After a lot of bramble cutting in the afternoon, and absence of medication today so far, muscles particularly in legs ache badly and bradykinesia affects my manipulations of things with my hands. Capitulate and in the evening take 1×125 mg L-dopa, clonazepam and 50 mg amitriptyline.

13/1/13: sleep quite well and very reluctant to rise in the morning. Feel noticeably more doddery and fumbling than ever. We will continue at 3×125 mg L-dopa per day.

14/1/13 rather poor night. Usual lakes and shoulders, arms, groin. Still fumbling.

15/1/13 night as above. Increase L-dopa to one and a half 125 mg 3 times per day.

18/1/13 much the same though better night. Increase L-dopa to 2×125 mg 3 times a da

22/1/13: nights reasonable, but have to repress tendency to writhe: make unwanted jerking movements of the body and neck and purse lips/pull the lower lip down when concentrating on task like writing this. Reduce L-dopa to 125 mg times per day starting at 1400h.

23/1/13 much improved at present. Dyskinesias more or less gone. Muscle pains/aches seem to be unconnected. Much the same as usual.

28/1/13 as above though with muscle cramps and aches. Take clonazepam earlier. Short lie down helps. Take L-dopa times one in the evening since dyskinesias apparent during day. One dose at night might work better.