James Harvey
Forum Replies Created
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My apathy was made worse by insomnia. Recently I started a CBT-I program (Cognitive Behavioral Therapy -Insomnia) for insomnia that seems to be working. It has given me a sense of control over the insomnia and about 4 extra hours of free time each day.
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For about 3 months I had mild, intermittent abdominal pain and no appetite for an evening meal. Eventually the abdominal pain increased to the point that I went to an ED and, after an abdominal CT, was diagnosed with constipation. I had been taking oxybutynin (oxy) to calm my urinary bladder to decrease nocturia and apparently the oxy was contributing to constipation by reducing bowel peristalsis. I stopped the oxy and started taking 1.5 doses of Miralax and three 500 mg Citrucel tablets each day. (I use the generic versions of each.) I keep a BM diary to track the approximate amount of stool that I am passing each day. (Usually I just estimate, but I do have a strainer and scale that I use occasionally to check my estimates.) If I pass less than 10 oz of stool per day for 3 days (or if I have symptoms like abdominal pain or loss of appetite) then I take one extra dose of Miralax, one extra Citrucel tablet and 17 mg of sennakot before bed for one or two days. I have been using this regimen for about 9 months. Seems to work for me.
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Two books I have found useful are: 1. “A Parkinson’s Primer” by John Vine (basic overview) and 2. “The New Parkinson’s Disease Treatment Book” (published 2015) by Dr. J. Eric Ahlskog a researcher and clinician at Mayo Clinic. The second book has an extensive index so you can read just a few pages related to a specific subject.
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My experience (male, 73) may not be relevant to your situation but when I went to a full dose (100 mg tablet, 2x per day) I had severe urinary retention, especially at night. I was able to tolerate 1x per day OK.
A general suggestion — I find it useful to keep a written log of my adverse effects to meds because after a few years I may forget what the problem was (or that I even took the drug!).
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You mentioned that RLS was one problem. I don’t know if what I have is RLS or not but sometimes when I’m lying in bed awake one or both legs will “vibrate” (i.e., a motor nerve seems to fire a few times in the upper leg which causes the whole leg to shake) for a few seconds. This occurs about every 3 to 5 minutes. I moved my ropinirole dose to just before bed and this seemed to help some but it’s hard to say for sure since the problem is intermittent.
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In my post of 10-29-19 I indicated that gabapentin was helping me sleep. Indeed it did help for a few weeks but then in became ineffective even when the dose was increased to 500 mg. During the period of tapering off the drug my insomnia was worse than normal.
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I have what I think of as “vibrating legs,” i.e., the motor nerves seem to trigger creating a brief vibration of one (either) leg. It sometimes happens every 5 or 10 minutes when I’m lying in bed trying to sleep. I do not have a sense of some RLS symptoms I have read about, i.e., a feeling that I need to move my legs or a sense of something crawling in my legs. I may try a low dose of mirapex again. My experience with mirapex in the past is as follows. At that time it was prescribed for hand tremor.
Starting Dose: 0.125mg 3 x per day for 1 week Started: 9-16-16 Stopped: 2-14-17
Full Dose: 0.25mg 3 x per day
Took the starting dose for 8 days. On day 9 (9-24-16) started the full dose. Took the full dose for 7 days (through 9-29-16). Had adverse effects. Then went back to the starting dose through 10-13-16. Then took 2 pills per day through 11-12-16. Then took 1 pill per day through 2-14-17.
Benefit: none noted
Adverse: About day 13 (9-28-16) I had sudden daytime sleepiness on at least two occasions in the late afternoon in a way that seemed abnormal (i.e., it was like momentarily losing consciousness). This occurred when I was driving on an Interstate — I woke up to find myself drifting out of my lane. Also had balance problems when doing balance exercises on one leg (but not when walking). Also had obsessive hypersexual thoughts starting about day 13. The sleepiness and balance problems went away when I went back to the starting dose. The obsessive thoughts went away a few weeks after I went back to the starting dose.
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I would mostly be interested in trying CBD to aid insomnia. Does anyone have experience with this? Do people develop a tolerance for CBD and hence need to increase the dose?
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Thanks for the heads-up. One more thing to be watching for. I do have momentary lapses, such as directions when going somewhere or the correct orientation of the key to the front door.
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A respondent asked if the gabapentin was effective in aiding sleep. This is a work in progress. I started with 300 mg and for the first week or so it did seem to help with getting back to sleep after waking up during the night (nocturia). I tried stopping the gabapentin when it no longer seemed to be helping and the insomnia got worse. So I started it again and this time when it no longer seemed effective I tried adding going to 400 mg of gabapentin. I had been told by a neurologist that it was often necessary to increase the dose and that I could go to 600 mg/day. (I don’t know if it matters for dosing but I am 73 years old and weigh 150 lb.) I have been taking 400 mg for a few days and it does seem to be helping. I do not yet know if I will need to increase the dose to 500 or 600 mg or if it will help with insomnia long-term.
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A PD patient in a MJFox Webinar about fatigue notes the close connection between fatigue and apathy. For me it seems to be fatigue more than apathy most of the time. And fatigue is aggravated by insomnia. I am currently trying gabapentin to help with sleep. Of course sleep without drugs is better but if there is no or minimal drug overhang the next day then sleep with drugs is better than no sleep.
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Fatigue and insomnia are my major problems. For insomnia, I installed blackout blinds so I could sleep in the morning. Also, I have recently tried eliminating caffeine (e.g., chocolate) after 3 pm and having a schedule of events leading up to being in bed by 11 pm. My schedule is 4pm home exercises, 6pm dinner, 8pm aerobic exercise (treadmill, etc), 10pm prepare for bed. Of course the schedule is not absolute but I try to adhere.
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I have not tried video-visits but would like to. For finding novel treatment options video would open up access to clinical research centers like Cleveland Clinic, Johns Hopkins and Mayo Clinic.
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I have insomnia that I attribute to PD. The things that have helped me: 1. melatonin about 1 hr before bed (I am male and weigh about 150 lb), 2. blackout window blinds so I can sleep in the morning, 3. gabapentin 1 hr before bed, 4. one-half of a carbidopa-levodopa tab when I wake up during the night (at about 3 am and 6 am). The gabapentin is a recent addition. It was prescribed to help reduce bladder activity and it has reduced nocturia frequency but it also enables me to get back to sleep. The gabapentin makes me a little groggy in the morning but the better sleep pattern makes it worthwhile overall. The gabapentin also seems to reduce my ability to remember dreams.