Thursday, 9 May 2013

Dealing with neuropathic pain

I had a useful visit to the pain clinic on Tuesday. Val accompanied me and I was interviewed by a pleasant team of three: a doctor (physiologist sort-of-person), an acupuncturist and a psychologist. They all agreed that they could help me and were impressed by what I was already doing to help myself. It was also agreed that the pains may or may not be anything to do with PD and that I might have something quite different - fibromyalgia was mentioned, with which I am familiar - as well as this odd parkinsonism, but that it didn't really matter what it was. Their job is to help me manage my pain, not to diagnose what's causing it; a very pragmatic approach which appeals to me.

The upshot is that initially, I will have a course of four 'Westernised' acupuncture (i.e. with an understanding of what is being done in terms of the nervous system rather than just traditional acupuncture points) treatments starting after my June holiday, since I has never tried it and was very open to the possibility that it could help. Thereafter, I will be supported according to my needs and what works. Mindfulness could be another helpful pathway which the psychologist will undertake, aided by 'guru' Val (who is very keen on meditation). And the doctor explained that, among other things, I can have small injections of anaesthetic into my principal aching muscles which can give relief for a while.

So all-in-all, a very positive and worthwhile visit. Well done the NHS! 

Sunday, 21 April 2013

EXCELent way to portray drugs and their actions

I've discovered spreadsheets and the charts you can make from them. A picture, it is said, saves a thousand words. This is certainly the case here. The chart below is largely self-explanatory. Basically, it saves all the diary 'waffle' and is an attempt to digitise the way I feel from day to day. Here I present the first three months of 2013 and the main idea behind it is to see if I can spot a correlation between the drugs I am taking and my sleep, pain, motor control problems and slowness (bradykinesia). So far, one thing is clear: I have too many variables and so need to stick with the main drugs without changing the amounts. If I then introduce something new (like gabapentin) upon a constant background of dopaminergics, change should be obvious and directly related to the new introduction. See below for explanation of the key.
Graph showing relationship between drugs taken and perceived effects. Click for full-sized version
Left vertical axis
L-dopa = co-careldopa, 125mg 3 times daily
Pramip = Pramipexoles, 0.7mg 3 times daily
Amitryp = Amitryptiline (now discontinued; not helpful)
Gabap = Gabapentin (a muscle relaxant), titrating (=slowly increasing dose) to 300mg 3 times daily
Clonaz = Clonazepam, 0.5mg once per day

Horizontal axis is time.

Right vertical axis is my digitised perception of sleep quality, muscle (neuropathic) pain, motor control problems (fumbling because hands won't do what I want) and slowness (bradykinesia). 0 is normal and 10 is as bad as can be.

Once set up and understood by me (thanks to Dalmae, my daughter-in-law who knows spreadsheets inside out), these records are quick and easy to update and charts like that above will be the core of this blog from now on.

Conclusions so far: need to stop short-term experimentation with doses and persevere with main drugs, adding or subtracting other hopefuls from time to time. Short-term stopping and starting (see February, above, when I became convinced that the meds weren't helping!) are a mistake. At present, I am titrating gabapentin to a higher dose, as agreed with Dr Rhys Davies, my neurologist whom I saw last week. This may be having a useful effect. Time will tell. I have - at last - got an appointment to visit the main hospital Pain Clinic where they may have some useful advice to offer on pain management. Meanwhile I continue muscle-stretching exercises (an eclectic mix of qi gong, pilates and standard physiotherapy) which I have been doing almost every day for over 2 years. And, of course, there's hard physical work to be done on the farm which I continue to find helpful. Inactivity, particularly sitting, remains problematic. Hacking out hundreds of bramble roots is a current favourite as is getting massive branches of ivy out of the poor trees.

So what neuropathic disease do I have? The best we can do at the moment seems to be a form of Parkinsonism but clearly not Multiple Systems Atrophy in which decline is rapid. My condition seems to be stable on my regime of drugs and exercise. Not ideal but I can live around it. 

Sunday, 3 February 2013

Diary: February 2013

2/2/13 L-dopa dose too low so increase to night and one in morning (125 mg). Pains on 1/2/13 as bad as ever been, partly because of spending hours on knees painting roof?

3/2/13 2×125 mg L-dopa in the morning. Very uncomfortable during day unless working outside pruning raspberries. A sense of desperation as I search for some way to relieve the constant tensions in my major muscles. Spend some time last night searching for information on muscle relaxants.In general, not sleeping as well as previously and I suspect amitriptyline is no longer working. It certainly doesn't seem to have any effect on my aches and pains. I read during my research that clonazepam ceases to be effective if used for long periods. Over the last week I have generally taken clonazepam and amitriptyline early in the evening followed at bedtime by L-dopa only. I am still trying to find the optimum dose of L-dopa.
4/2/13: reduce clonazepam to 1 in evening and amitryptiline to 25mg. L-dopa 125mg morning and early evening.
6/2/13: increase L-dopa (syn, for co-careldopa) to x3per day. Muscle cramps quite bad and fumbling noticeable. Sleep adequate.
8/2/13: Sleep v poor with constantly tensioning muscles in legs and shoulders. Drugs as 6th. Symptoms of fumbling worst in late morning during and after exercises presumably coincide with max L-dopa blood concentrations? Prompts Q yet again: is L-dopa making me worse? It has no effect on muscle cramps which are seriously lowering my life quality. Do I need Dantrolene for chronic muscle spasm? (

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.

Monday, 12 November 2012

Diary 2012

This is mostly routine and not very interesting but serves as a useful record of what I took, how I felt and various experiments I have tried. I shall add to it regularly. It begins, rather arbitrarily, in April 2012 though in fact my troubles had been going on for much longer than that; at least two or three years. But it became apparent that I would have to keep a record of my medication and the effects it apparently has. This, then, is the point of this diary.

24/4/12: See Dr Maclean. Get pramipexole tablets: 0.088 mg three times per day. Start pramipexole. 1330: take  L-dopa +1 pramipexole. Status: normal leg and  neck/shoulder aches. Sleeping well recently on L-dopa times three +2 clonazepam, one at 19:00 hours and one at bedtime. No longer using any prolonged release L-dopa.

25/4/12: Very poor night sleep-muscular discomfort as it used to be months ago. No comfortable posture.

26/4/12: Fairly poor night again though not so bad as before. Feel unchanged physically. No nausea.

2/5/12: As above but consistently bad nights (second half) with much discomfort and consequent thrashing about in attempts to achieve comfort.

3/5/12: Day after Snowdon assent. No general change. Poor sleep later in the night.

8/5/12: Start half co-careldopa tablet plus 2 0.088 mg pramipexole three times daily starting at lunchtime.

9/5/12: Very poor second half of the night-RLS. No nausea or any other side-effects. no significant change. Now taking tablets at approximately 0800/1500/2300.

13/5/12: Return to taking tablets at about oh 800, 1300 and 1900 as before because muscular aches and pains and sleeping are worse than ever. Also increase L-dopa to one home tablet three times a day plus pramipexole (2 tablets).

14/5/12:Good nights sleep.

18/5/12: Condition not changed. Start 0.35 mg tablets pramipexole today plus one L-dopa.

20/5/12: Reduce L-dopa to half a tablet three times daily. After a long drive (Aberystwyth return) yesterday, suggestion or less muscle pain than expected. Is pramipexole beginning to work? No! False dawn. Revert to to one full L-dopa tablet.

25/5/12: Continue on one L-dopa tablet +0.35 mg pramipexole tablet three times per day. Possible general  improvement in muscle pains.

29/5/12: Stable; no particular change. Insomnia quite bad:? Related to pramipexole?

3/6/12: Increase pramipexole 0.7 mg (2x0.35 mg) plus half normal L-dopa tablet three times per day.

4/6/12: At midday day, stop L-dopa altogether. Some side effects: feeling a slight nausea and weakness (but climbed hill normally).

5/6/12: Noticeably worse muscle aches today. Lack of dopamine?

8/6/12: Motor difficulties and more muscular pain with symptoms very like those I had when stopping L-dopa for experiment. Slowing down when doing things and not swinging arms when walking. Nothing serious but definitely noticeable.

9/6/12: Muscle aches and slide tremor when doing things and motor movements of hands attenuated continue and worsen. Take one tablet 100/25 mg co-careldopa after lunch and will continue at three times daily to observe if effects reduce. Continue with pramipexole as normal.

10/6/12: Feel significantly better-so far. So L-dopa is quick (few hours) acting.

11/6/12: Feeling quite nauseous and morning before pills. A bit of another false dawn yesterday: a little better only.

19/6/12: Stable but with the usual muscular pains at various times in doing. As ever, physical work masks these.

29/6/12: In Inverness on camping holiday. Stable on existing dose (pramipexole 0.7 mg +25/100 mg co-careldopa) though muscle pains continue at certain times during the day. Increased pramipexole by 0.35 mg: 0.7+0.35 mg equals 1.05 mg three times per day. In a week, will increase again to maximum dose of 1.4 mg (2x0.7 mg) three times per day.

5/7/12: In Unst, Shetlands. Increase dose of pramipexole to 1.4 mg (2x0.7 mg) three times per day. All well so far and generally feeling okay, especially when active.

15/7/12: Return home from Scotland. Interestingly, before arriving at home, I was more or less without aches and pains (though the increase in pramipexole seems to have made no difference at all), but as soon as I arrived at Mur Crusto, the unpleasant familiar neck and coathanger aches and groin ache returned just as they had been before leaving. conclusion: 1. Pramipexole probably has little or no useful effect and/or 2. The planes are due to stress associated with all the responsibilities of running the farm and business. I was in much less discomfort whilst camping in the cold-including in bed. I actually slept better and was more comfortable in sleeping bag and self inflating mattress!

23/7/12: Aches across shoulders and neck exactly as before leaving for holiday. Holidays, it seems, include leaving behind aches and pains to a large extent!

6/08/12: Muscular aches have continued without change since returning from Scotland. Insomnia quite noticeable-awake in early morning at around 5 AM and those with discomfort until 7 AM when I get up and work. From today, decrease pramipexole from 1.4 mg three times per day to 0.7 mg three times per day.

11/8/12: Aches and pains somewhat worse so far.

12/08/12: Reduce pramipexole to 0.35 mg.

13/8/12: Discomfort quite considerable, badly affecting sleeping. Increase co-careldopa to 2x125 mg tablets three times per day.

17/08/12: After Dr visit, agree I should increase pramipexole to 1.4 mg three times per day again and reduce co-careldopa back to 1x125 mg three times per day. Start titration of pramipexole to 0.7 mg three times per day.

21/8/12: Start melatonin (one at bedtime). Better nights sleep and perhaps more comfortable.

24/08/12: Wishful thinking: melatonin makes no difference.

28/8/12: Pramipexole now 1.4 mg three times daily.

1/9/12: Experiment: take 1.4 mg pramipexole +1x125 mg: careldopa 12 hours apart (7 PM plus 7 PM), missing middle daily dose. So far, no difference.

6/9/12: Down to one dose (1.4 mg pramipexole +125 mg L-dopa) before breakfast (i.e. one every 24 hours). So far, no showing. Not good: considerable discomfort. Revert to sets of doses 12 hours apart.

17/9/12: Continuing on two times per day (12 hours) doses. Shoulder and neck pain during day, groin pain at night. Awake a lot, but otherwise not much different. About to leave for camping holiday.

24/9/12: Return from camping. No change in pains or medication rates.

28/9/12: Family visit starts (Richard and family) very tense and shoulders and neck. Take 1 mg clonazepam. Sleep unusually soundly.

5/10/12: Visit Dr Rhys Davies and Bangor. I do not have idiopathic PD, he declares. I have a parkinsonism of unknown provenance, probably not MSA. For this reason, taking drugs or remedies such as creatine-which work with PD-may not work or work well with my version of parkinsonism.

6/10/12: Start creatine supplement: 20 g (in 5 g doses) for first five days.

19/10/12: Start amitriptyline, 10 mg at night. Muscle aches variable as usual.

27/10/12: Aches and pains unabated. Insomnia about stop try reducing pramipexole (side-effect-insomnia) to 1.05 mg twice a day (from 1.4 mg).

29/10/12:Much better next day but by today, more or less as normal.

30/10/12: Increase amitriptyline to 20 mg at night.

3/11/12: Aches over the last two days noticeably less. Better sleep.

8/11/12: Reduce pramipexole to 0.7 mg twice a day. As is sleep. Certainly no worse and maybe slightly better. (Now taking 125 mg: careldopa +0.7 mg pramipexole every 12 hours. In evening, and one clonazepam to above. The bedtime, one clonazepam +20 mg amitriptyline).

14/11/12: visit Dr Maclean and agree that I should increase amitriptyline to 30 mg at night with a maximum of 50 mg. If this has no effect, we will stop the drug and try another such as gabatentin. At the same time, Dr Maclean will write a letter requesting an interview with the pain management specialists at Ysbyty Gwynedd. They apparently deal with acupuncture as well. I am unlikely to have an appointment before several months elapse which gives me ample time to try the various options still available to me in the form of pain mediating drugs. Just for reference, I am now taking 125 mg co-careldopa and 0.7 mg pramipexole every 12 hours. In the early evening, I take 500 µg clonazepam and another 500 µg before going to bed. And this time, I also take my 30 mg of amitriptyline starting today. I continue with my exercises for about 20 min a day and rarely miss a day. These are designed to stretch my muscles and joints. Furthermore, I am taking 5 g of creatine each morning. The old panacea of hard work still as a useful effect in that it masks the symptoms which are so distressing when I'm in bed at night.

24/11/12: reduce pramipexole dose to 0.35mg twice a day. Took this action because, if anything, I have been in slightly less pain and have been sleeping better. Ideal is to quit as much medication as possible consistent with me feeling reasonably okay. If things continue on as now, I shall stop pramipexole altogether in a week or so and see how I am.

29/11/12: continuing as 24/11. Definitely sleeping better though have periods when motor control is a little difficult: manipulating things with my hands. Pains remain variable. Can't sit still for long but feel best when keeping physically active. No problem with so much to do on the farm.

1/12/12: Return to 0.7mg pramipexole twice a day. Motor difficulties annoying and pains much as usual, especially groin-hamstring muscles and quadriceps at night. Increase amitryptiline to 40mg at night. No noticeable effect from this medication so far. Two days later: no noticeable change.

14/12/12: Changed pills on 3/12 to see if I slept better. Since that date, I have been taking 1 pramipexole at about 8am along with usual co-careldopa 125mg. About 12h later, I now take 1 clonazepam and one co-careldopa. At bedtime, one clonazepam and 4 (changing to max dose of 5 tonight) amitryptiline. Sleeping pattern has changed for the better although I still wake frequently during the night. But I'm usually asleep, more or less, until about 7.30am. Pains in the evening are minimal but otherwise much the same during the day. Some days are better, others normal. Hard work still overwhelms pains so that I'm not aware of them. Often worst sitting down at lunchtime.

15/12/12:Experiment – stop all dopaminergic drugs.

16/12/12: take one L-dopa after lunch following the return of "fumbling"

18/12/12 8 PM to one L-dopa plus usual others. Ending experiment because of family problems.

20/12/12: start L-dopa 125 g in the morning. Worse day yet. Very tired and stressed, partly because of visitors coming tonight and partly because of Theo and Lenor and their illnesses. Hot shower gives instant relief to back and neck. Take 2nd L-dopa in the evening and usual clonazepam. Noticeable reduced ability with fingers – typing very poor – always pressing the wrong keys. But did have a good night's sleep last night. Strange punctuated deep breath intakes first noticed yesterday.21/12/12: good night's sleep.
Cramps continuing and general feeling of weakness – as if I had climbed a huge mountain the day before.

23/12: continuing to sleep well at night and stop aches and pains variable. 2×125 mg L-dopa per 24 hours and 50 mg amitriptyline at night plus clonazepam as usual.

25/12/12: good sleep. Manipulation still difficult. L-dopa and increased to 2×125 mg twice per day.

27/12/12: no clonazepam at bedtime – sleep okay but woke several times.

28/12/12 reduce L-dopa in evening to 1×25 mg 2 times per day (instead of 2 in the morning and one in the evening).

Diary continues 2013…

Wednesday, 17 October 2012

Back to square one?

On reflection, following my recent visit to the neurologist (previous post), it begins to feel as though I am actually a step backwards from where I was when I had a diagnosis of 'idiopathic PD'. Now I don't have that; just some vague 'Parkinsonism' whose origin is unknown and, it follows, whose best treatment is uncertain. Dr Rhys Davies commented that the trials of things like creatine (which I am taking since it isn't harmful and just might be helpful) may not have any effect on me since they are only known to have effects for 'proper' PD.

What I didn't think to say at the time was that my new vague diagnostic status implies that the PD drugs I am taking might not be the best - or even the right - ones for this peculiar and often painful neuromuscular condition. They may also have the negative effect of causing my serious insomnia. That they do have some beneficial effect  I have little doubt since I have several times experimented with reducing or stopping them. I usually feel quite good for a day or so when I do these trials but then the pains increase and so do the tremors. So I go back on the drugs.

So where do I go from here? If, as Dr Davies said, pain specialists are unlikely to be able to help with this sort of pain, what can I do to move things along so that treatment is more effective than at present? And frankly, I'm stumped. Talking with my GP cousins a while back rather suggests that what I need for another opinion is not a specialist at all, but a 'generalist' physician who won't look at me with PD-tinted glasses. Indeed, she may see a patient suffering from something rather different which requires different drug treatment. But where do I find a general physician who can either corroborate my Parkinsonism status or suggest some other line which might be worth following?

Ideas welcomed!