December 12, 2010

My Week with Parkinson's & 5-HTP

charter maldriverna

This will be a  weekly posting from now on.  I'll  report on how I'm doing in living with Parkinson's.  As is the case with the blog itself, while 5-HTP is in the heading of this post, the journal will cover Parkinson's-related issues in general.

I hope to make the weekly posts fairly succinct, but this one will be long, since I want to establish the base line on where I am today..  Bear with me.

Week's Events in Brief

This was a busy week.  Lots of bridge -- my regular Monday bridge at the Iona senior center, the every-other Tuesday bridge at the Westchester Apartments, a very enjoyable game at my house on Friday with good friends, and the frequent Saturday game with a bridge-playing friend at an assisted living facility.  Interesting visit on Sunday to the National Portrait Gallery's excellent Hide/Seek exhibit and supper that night with one of my Nepali pals, lunch at the National Gallery on Tuesday with three fellow BNA retirees, very enjoyable lunch on Wednesday with a friend I've known since 1956 followed by the evening performance of the Shakespeare Theatre's Candide (see note below), and ending the week with a gourmet meal at a good friend's condo Friday night. .

It was nice to see Candide sober.  My wife and I saw (sort of) the original Broadway production of Candide on the night of our wedding (January 19, 1957). We were married in Washington in the morning, had a many-martini lunch after the wedding and drank our way to NYC on the train.  A friend had given us tickets to Candide as a wedding present. We decided early on in the show that we didn't like it and we were vocal about our opinions.  We were asked to leave.Now, 53 years later (32 of them sober!), I found Candide delightful.


Interesting week.  I mistakenly took two 100 mg. pills Sunday night.  The Manic Monday that followed is detailed in earlier posts below. I kept with the regular dosage for the rest of the week until yesterday.  Since I had nothing on my calendar for today, I decided to experiment with taking a 50 mg. pill Saturday afternoon and the usual 100 night. I was wide awake at 4 a.m. this morning.  I woke up with the idea for this weekly journal and laid in bed for 10 minutes or so as ideas came surging in on how to go about it.

I've mentioned before in other postings this unusual waking up with ideas for resolving things that had been bothering me or with a bombardment of new ideas. Prior to taking 5-HTP, I'd never experienced anything like this.  My 5-HTP research hasn't uncovered reports on similar experiences, however.

I may continue to experiment with an extra 50 mg. of 5-HTP every once in a while in the future just to see if I continue to have these bursts of  creativity and energy. But I'm not too keen on the hyper mood this extra dose generates.


I don't have the tremor problem usually associated with PD. Instead my issue is balance. Sinemet and now its generic (carbidopa/levadopa) alleviated the serious problems I was having with this prior to my 9/09 diagnosis. I also have benefited greatly from training I got this summer at Georgetown University Hospital in BIG -- an exercise program devised for people with PD.  (I'll do a posting on this in the next week or so.)

The PD meds I take are 1 mg of Azilect on awakening and 25/100 mg of carbidopa/levodopa (Sinemet) three times during the day -- wake-up, 11 a.m., 6 p.m. and a bedtime 50/100 extended release carbidopa/levodopa. The dosage is the same as I started with back in 9/09 except that early this year my neurologist (Dr. Laxman Bahroo who is affiliated with Georgetown University Hospital's center on movement disorders and Parkinson's) changed the bedtime dosage to the ER(extended release) carbidoba/levodopa since I was waking up in the morning with some aches and pains in my legs.


Normally I'm a pretty upbeat person with lots of energy (bordering on ADHD!). But  I had a bad spell with a very unusual and sudden onset of depression, insomnia and panic attacks that began in May 2006..  I attributed this at the time to a reaction to my abuse of Tylenol  PM and ambien during and after a trip to Nepal.  Over the course of the summer, I was prescribed trazodone, remeron, Lunesta, Rozerem, Lexapro, and clonazepam, none of which worked.  Most made it worse.  Finally it was suggested I try a holistic approach, which eventually did work (see my earlier posting on meditation). I remain convinced that overuse of Tylenol PM and ambien was the triggering culprit.

After that (and the 11/06 installation of blackout curtains-- see insomnia heading later in this posting), I had several years of feeling great.  Often I'd be out for a walk and would find myself saying spontaneously "I love my life!" Then I had a year or two of Parkinson's related depression.

After the PD diagnosis (9/09)., I was prescribed the old-line antidepressant Elavil.  It addressed both the insomnia and the depression but it resulted in my gaining 5 pounds and in feeling groggy in the morning.  When I switched neurologists  to Dr. Bahroo in January 2010, he expressed concern about the cognitive side effects of Elavil. Since that's the last thing I need given my fears about Alzheimer's, I decided to try 5-HTP.  Bingo! I'm now back to "I love my life" and I'm fairly energetic for an 81-year-old.


Before the onset of Parkinson's, sleep had not been a problem until 1997 when, without warning,  as I started to drift off to sleep I would experience a body jerk and then would be wide awake for much of the remainder of the night. This continued most every night.

After several years of this and of intermittently using ambien and Tylenol PM, I found that I could get a good night’s sleep, pill free, by bedding down on the living room couch. One thing puzzled me – how come I couldn’t sleep in my bedroom at night but had no trouble taking my afternoon naps there? Belatedly I wondered if the light coming into the bedroom from the street light directly across the street was causing the problem. I installed blackout blinds in Nov.2006 and immediately began sleeping well and pill free in the bedroom! It only took me 10 years to put two and two together and come up with this solution. Jeez!

My other major bout with insomnia I described in the above discussion of Mood/Energy.

Insomnia came back with the onset of Parkinson's. As noted already, Elavil dealt with it fairly well. Since switching to 5-HTP my sleep patterns have been somewhat more erratic.  Some nights I'll get 8 or 9 hours sleep which is very unusual for me.  Other nights I'll have the 4-5 a.m. wakefulness.  I'm pretty sure that when I up the 5-HTP dosage beyond the regular 100 mg, the chances are that I'm going to be wide awake at 4 or 5 with no chance of using meditation or anything else to get back to sleep. But with the regular 100 mg., sometimes I sleep through the night (but with my usual 1, 2 or 3 bathroom breaks) and get my usual 6-7 hours of sleep.  Other times I'll have trouble at 4 a.m.-- sometimes meditation helps me get back to sleep, sometimes it doesn't.  But even when it doesn't I never think of it as "insomnia." The wakefulness isn't accompanied by any anxiety or tension. More often than not I recover some if not all of the lost sleep by falling asleep while reading the morning Washington Post.  And usually a sleep-deprived night is followed by a night of 7-8 hours of sleep.  


Usually depression, insomnia and constipation are listed as the most common side effects of Parkinson's. For me, all of my bouts of insomnia have been associated with constipation. Often the only way I could get back to sleep was to drink a huge amount of water and have a bowel movement. (I want to do more research on this possible insomnia/constipation connection. Stay posted.)

With 5-HTP, constipation is never a problem.  Instead, I may have as many as 4 or more bm's  during the day -- all regular, no diarrhea.


For years, my weight has hovered around 165, give or take a few pounds. Within just a couple of months of using Elavil, it was approaching 170 with no signs of stopping. Within a couple of months of switching to 5-HTP, my weight dropped below160 for the  first time in years (if not decades) and over the summer months when I was getting a lot of exercise gardening, the needle began dropping toward 155.  But now with the cold weather arriving,it's drifting back up toward 160.  I'd like to see the needle start back toward 155 before the Christmas over-indulging.  That's one reason I decided to experiment with the extra 50 mg. of 5-HTP yesterday.  Studies have shown that 5-HTP can be effective in generating weight loss.

After 20 years of two-pack-a-day smoking and 30 years as a very actively practicing alcoholic, I've been doing pretty good  on my diet since I stopped drinking in 1978.  I don't (can't!!) keep sweets in the house.  I keep containers of prunes, apricots, grapes, clementines and a soy bean mix on the kitchen counters and I snack my way through the day. My breakfast usually consists of a bowl of Fibre One piled high with blueberries, raspberries and blackberries, plus a couple of veggie sausages.  Lunch often is  a bowl of instant oatmeal and a can of sardines and perhaps some fruit and yogurt.Supper all too often is a frozen dinner, but I try to buy only frozen foods that show the sodium content as less than 20 percent of the Recommended Daily Allowance.

I used to worry about my coffee consumption -- almost always two cups in the morning and two at the late afternoon "cocktail hour" plus an occasional lunch-time coffee. But no more worries now that we've seen the recent studies suggesting that coffee consumption can slow down the progression of PD.


This is something I've been good about over the years and I'm sure it's a big reason why I'm doing relatively well today. I started biking to work in the early 1980's, well before virtually anyone else. And I'd be out on my bike weekends and holidays whenever the weather permitted.  Age has slowed this down, but I was still doing a lot of biking until  3 or 4 years ago when the PD balance issues began to slowly emerge.  I substituted fairly long daily walks until this year when my Obsessive/Compulsive Disorder focused on gardening and this took over my exercise life. The BIG exercise therapists told me they saw no reason why I couldn't resume biking as long as I was careful to avoid uneven terrain and heavy traffic and as long as I started wearing a bike helmet which I had avoided during all my prior years of biking.  So I now have a new "comfort bike" (and a helmet).  I had a few bike rides this past fall.

I'm faithful about performing my BIG PD exercises just about every day.  The program calls for doing the exercises twice a day.  I only do them once, but I also do some exercises that my physical therapist had recommended for dealing with PD.

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