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!

Friday, 5 October 2012

Neurologist visit and results

Val and I went to the neurologist, Dr Rhys Davies (of the Walton Centre, Liverpool) yesterday morning for my 6-monthly review. Happily, this was at the Bangor hospital, Ysbyty Gwynedd.

I had prepared for this important review with a list of questions as well as an up-to-present completed Unified Parkinson’s Disease Rating Scale (UPDRS), a long questionnaire which would normally be completed by the doctor. My idea in doing this is to achieve some measure of objectivity in the progress of the disease. Dr Davies congratulated me on taking the initiative on this and retained my results so far for his files on my case.

The questions is asked I've listed below:

  1. Neuropathic pain-relieving drugs to try, as suggested by GP (cousin, Cathy Williams). At present, suffer serious discomfort and insomnia. E.g. amitriptiline, pregabalin, duloxetine. Or tricyclic antidepressants recommended if the sleep pattern is disturbed ( Referral to pain management specialist (e.g. Dr Bernhard Frank at Walton Centre)? Private or NHS, depending on time
His response: Pain management is not for this type of problem. He knows Bernhard Frank well but does not think that he or anyone else in this field can help. On the other hand, amitriptiline  could well be useful, starting at a low dose. It could help me sleep better and has the useful 'off-label' effect of reducing Parkinson-type tremors.

  1. Dopaminergic drugs: do they quickly lose efficacy if taken at max dose? Deliberately reduced doses of co-careldopa and pramipexole to 125mg of former and 1.4mg of latter every 12h since 1/9/12 without significant change. Previously taking above dose three times daily. Pramipexole not as helpful as I’d hoped. Worth trying other dopamine agonists? What other drugs available if these cease to be helpful? Problem with all these drugs is that they only mask symptoms and do not slow or stop the disease. So how about 3-6 below?
His response: We discussed the experiments with different doses which I have conducted on myself and he agrees that what I am taking now sounds about right. No change needed.

  1. ‘Ibuprofen May Reduce Risk of Developing Parkinson's Disease, Study Suggests’ ScienceDaily (Mar. 4, 2011). So I am taking 200mg each day on basis that it won’t harm me but could reduce damage. ‘Ibuprofen could be a potential neuroprotective agent’ concluded researcher in study at Harvard School of Public Health. Okay to continue this?
His response to 3,4 and 5: There is no harm in trying any of these non-prescription items. Some of his patients have taken creatine and found it helpful. But there is one big caveat: see conclusions, below this list

  1. Nicotine patches appear to slow disease progression. ‘Nicotine has a neuroprotective effect on dopaminergic neurons’ ( Any reason I shouldn’t try them for a few months? Protocol for use available from

  1. Creatine is evidently neuroprotective and reduces the loss of dopamine within the striatum and the loss of dopaminergic neurons in the substantia nigra (  Creatine widely available as food supplement and generally depleted in vegetarians (I am one).

  1. Rasagiline (MAO-B inhibitor) reduced the long-term progression and symptoms in PD and delayed the need for antiparkinsonian drugs and patients had lower scores on the PD rating scale in a Phase III study. Would need prescription and possible change of drugs taken at present. (
His response: Rasagiline has been found to be somewhat useful in PD and he has used it with some patients, but see conclusions below.

He did a few of the standard tests on me (finger-tapping and balance) and said that it seemed to him that I was slightly better than I was 6 months ago. Val agreed with this, noting that when visitors who know of my condition come to the house, they remark that I am generally looking well and better than I had been when they last saw me. I certainly don't think I'm worse though, as I pointed out, it's not the PD-like symptoms (slight loss of motor control when manipulating things with my hands, for example) which bother me, it is the persistent muscular aching across my shoulder girdle, neck and upper arms plus around my groin and hamstring muscles down to my knees that really affect my quality of life. It is the groin pain which is at least partly responsible for my insomnia since, once I am awake, I cannot find a comfortable position in which to go to sleep so I often don't. Of late, I have often taken to getting up early (6-7 am) and working with my computer upstairs so I don't disturb Val who needs her 8 hours! I seem to be able to get by on much less though I do tend to fall asleep whilst being read to by Val or watching the TV; a great nuisance.

Finally, the doctor dropped a minor bombshell. I do not, he said, have idiopathic (=no known cause) Parkinson's Disease. I simply don't have the right symptoms. Neither do I appear to have Multiple Systems Atrophy (MSA), a far worse disease, also with no cure. What I have is a rare (possibly unique) form of parkinsonism for which the outcome is unknowable. It might progress as the other neuropathic diseases or stabilise with the medications I'm taking or trying. No-one can say. And because it is definitely not standard PD, the alternatives which I listed above which do seem to have useful effects for PD may not have any useful effects for me but there's no harm in trying them anyway. 

So Val had already ordered some creatine powder and I've started 'loading' with it today. It is apparently very safe and vegetarians generally lack it. I've been taking ibuprofen for about a month. I might try nicotine patches after a few weeks have elapsed to allow me to see if the creatine is at all helpful.

So overall, Val and I felt somewhat more optimistic than we have been. I am doing everything I can to maintain my health and fitness - not difficult with all the fairly heavy work to be done on the farm which, incidentally, I love. I have a good muscle-stretching set of exercises which take me around 20 minutes to complete every morning as a routine. By the way, I keep a brief diary of my condition, chiefly related to any changes I try in drugs or in dosages of those drugs. My aim is to keep doses as low as I can consistent with a reasonable quality of life. I know, from several trials, that I do become worse if I reduce either the dopamine or dopamine agonist. At present, I am stable on what I am taking. Let's hope some of these new things will improve matters.