sleep journal; ferritin

For everything and anything else not covered in the other WED/RLS sections.
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sleep journal; ferritin

Postby brightventure » Sun Sep 05, 2004 8:35 pm

Possible sleep journal entries that I have come up with:
sleep night date; night of week; activity just before bed; conditions of room; where was night spent, (own bed, couch, hotel); symptoms at time of going to bed; time went to bed ;approx time fell asleep; # of arousals; time of arousal and how long; why aroused; time awaken and was it to an alarm; time got up; approx hours of sleep; rate nights sleep; how felt when woke up;
meds taken during day, how much, time of day; drug side effects during day;
exercise, time of day and how long; caffeine intake; water intake; stress during day; remedies tried before going to bed; amount of sunlight; amount of alcohol; any naps during day, time, and how long;
what worked; what did not work; comments

I am trying to put together a sleep journal to help me and Dr. evaluate what is happening with my sleep patterns, lifestyle and what is or is not working. I am hoping this will help me to talk to my Doctor in three months regarding progress I have made in getting better sleep. I have set this up in a spreadsheet excel. I can evaluate things better by looking at info in a spreadsheet, versus looking at individual pages of info and having to flip back and forth to compare entries.

What do you think? I think some of you have already been doing journals and I am looking for some input as to what are some good things to keep notes on for this condition and how things contribute to RLS problems and what helps relieve and help me get better sleep.

BACKGROUND: I am a fairly health, 40 something, overweight female. In the past I have been getting a fairly good nights sleep, but find it hard to get out of bed because I feel like I am not rested. This has been going on for about 4 years. About a year ago, I changed General Practice Dr after other Drs not doing much for me. For past year, GP has tried many remedies to rule out things. Finally, doctor indicated a sleep study needed to be done.

PLMS/RLS: After the sleep study which was done about 2 months ago, I was diagnosed with PLMS a kissing cousin to RLS. I had never heard of these sleep disorders and was quite shocked when I was expecting some form of sleep apnea. The study said my overall sleep architecture was normal except for increased stage 1 sleep. Movement index was 25 movements/hr hence the PLMS diagnosis. I am lucky, because I have been referred to a very good sleep doc who is very knowledgeable regarding RLS and diagnosed the PLMS. I have found no support groups for PLMS on the web. He is not diagnosing RLS at this time because I do not present the usually creepy crawly and I can sit for prolonged times without having to get up and walk it off to get relief. From reading some of the posts, I think I could be borderline with RLS. Legs are sore like I have had a Charlie horse, but have not had one. Just changing positions relieves my symptoms. I never paid much attention to it before as a symptom. I seem to have a high tolerance for pain so for me soreness is just a nuisance and to others it might be something that makes you have to walk the floor.

MEDS/LIFESTYLE: Sleep Dr. originally prescribed mirapex and clonazepam. For me, the side effects were worse than not getting a good night sleep. Instead of just being tired with meds I was groggy, not clear headed, zoning out driving and barely functioning at work. Stopped meds and working on lifestyle changes. Hence, some of the entries in the journal. I’m a nightowl, and trying to work on better sleep patterns and force myself to go to bed earlier and getup at the same time each day. I am a chocoholic; this is the only caffeine that I get. I’m working on losing weight and exercising more. If I drink the 8 glasses of water a day that you are suppose to drink, it makes me get up in the middle of the night, which irritates me. I perceive a connection with SAD because the more exposure to sun makes me sleep and feel better. I do not get much sun exposure normally due to an inside office location, short drive to work and work long hours.

IRON/FERRITIN: After doing some research on PLMS and RLS, I found that low iron was a potential culprit. I knew I had a possible iron problem because on occasion I could not donate blood due to low iron. I had been regularly checked for iron and thyroid levels in past (I think) because I had been complaining of being tired all the time. I found that ferritin was not a part of the regular bloodwork test CBC. I requested my GP do more blood tests for iron, ferritin, serum and B12. My ferritin was a 5 last week and min for normal is 10. Everything else was in normal range. On my first visit to sleep dr after sleep study, he saw the bloodwork results done that week. He prescribed ferrous gluconate 300mg x2, 3x a day with vitamin C. First few times I took it without vitamin C because it was not handy and had a lot of heartburn. Started taking ferrous with chewable vitamin C tablets and have not had as much heartburn. Vitiamin C is suppose to help absorb the iron and seems to help the heartburn at the same time.

BLOOD DONATOR: Asked Dr. about giving blood and he said to stop until I got things under control. I’ve been giving blood several times a year since I was a teenager. I have lost track of how many gallons I have donated over my lifetime. Any other blood donators with RLS out there?

BLOODWORK: FYI, I talked to my Sleep Doctor who is knowledgeable about RLS regarding several blood related comments that I had found in my research. He indicated the following. Iron and ferritin need to be watched. Ferritin affects the way iron is absorbed and if iron is not absorbed it effects the dopamine levels. Maybe this is why dopamine drugs seem to work and are usually prescribed? Dr. indicates that Magnesium, potassium, calcium levels are usually normal in RLS sufferers.

Sorry about the long post to just get feedback on the journal, but thought some of my findings would be of interest.

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Sleep Journal

Postby jan3213 » Sun Sep 05, 2004 8:46 pm

Hi Brightventure, I'm Jan

I found you post most interesting. I'm thinking of starting a journal myself. I'm also on Mirapex and clonazepam and get very sleepy during the day, especially driving. I, too, am a nightowl and have trouble "shutting down". I, too, seem to be in a fog sometimes. I have never had my ferritin level checked and have never heard of it until I joined this forum. I will have that done. I did have a sleep study. The sleep study doc. told me my problem was "stress" although I was diagnosed with RLS and PLMD at least 10-12 years ago. What is SAD? Thanks for posting. I keep learning every day.

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Postby Sole » Sun Sep 05, 2004 9:02 pm

Hi Brightventure,

A couple of thoughts and questions. How long were you taking Mirapex and Klonpin? What were the dosages?

You mentioned not finding a newsgroup with information on PLMS/PLMD. There is a newsgroup you can access through google. It's . You can read and post directly from Google or you can download it through your newsreader. There's quite a bit of info there.

A sleep journal is an excellent idea, as I've mentioned it and used one myself. My Dr. was very grateful for it. A few suggestions. It's a great idea to keep a detailed journal for yourself but for your initial visit only take a very simple sleep journal with you. Dr.'s rarely want to spend time pouring over anything you bring them, even if it's full of very useful information. If your doc is interested, let him know you have a much more detailed journal at home...and what's included in it.
Here's an example of what I gave to my Dr. I'm quoting from a previous post I made, some time back. The journal I gave her consisted of a two week time period.

"Day 6 on Mirapex. Last night, at 10pm, I took .25 Mirapex. No Klonopin. I headed up to bed at 11pm. I could tell it was going to be a rough night. My legs were a bit restless. Which was disappointing because it had been so nice to watch the drug work so well for the first few nights. AFter tossing and turning for 40 minutes or so I got up and took .5mgs of Klonopin. Stayed up until I was exhausted, which was 2am. Tossed and turned for another hour in bed and finally went to sleep. Woke up at 6:30 with my legs in full force. No headache today but the dull ache is back in my shins. I'm baffled, to say the least. 3.5 hours of uniterrupted sleep."

Each entry is ended with the number of uninterrupted hours of sleep I got each night, in bold. The bold or highlighting is very important because it allowed my doctor to see the most important result...actual hours of sleep! She was totally taken aback by how much I truly lacked sleep. I guess it's one thing to SAY how much you sleep and quite another for someone to READ it. For my doc, reading my journal was a big eye opener.

As to the rest of your post, I don't feel qualified to respond but I'm sure you'll get plenty. :-) Keep on keeping on. You're doing the right thing by researching and being pro-active!

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

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Postby brightventure » Sun Sep 05, 2004 11:33 pm

med dosage:
Mirapex .25mg in three days caused nausea and headache could not go to work. Doc said to stop mirapex, but to continue other med.
Clonazepam .5mg. Still had the groggy days and stopped taking because I needed to be functional inorder to meet a work deadline. No improvement over a month period of taking the clonazepam. But that is me working on stopping the leg movements at night.

SAD-Seasonal Affective Disorder: associated with how much sun you need. Seasonal because it affects people more during the seasons that have less daylight hours and locations where they get few hours of daylight in 24 hours ie sunlight deprivation. Other than sleep disorders it is associated with chronic fatigue, depression, insomnia, muscle pain, nightshift work and weakness, etc. Treatment is with Special lightboxes which are several hundred dollars for about 30 mins a day while you sit at your desk or watch TV. Sometimes insurance may pay for it if prescriped by Doctor. For me, SAD was a self diagnosis. My sleep doctor said might check into SAD later as a reason for sleep disorder. In the meantime, I've been checking ebay for a good deal.

Like everyone searching for a easy fix, but nothing is easy.

Thanks for the link for plms/plmd. Sorry for any misspellings. In a hurry to leave for shakespeare in the park "comedy of errors". Hoping for some comic relief.

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Hello, brightventure

Postby jumpyowl » Mon Sep 06, 2004 4:31 am

Wish I had more time to analyze your long first post better. Just a few comments:

Most doctors send people to sleep labs to confirm or rule out apnea. You had a good sleep doctor.

PLMD can be definitely diagnosed by polysomnography depending on the number (intensity) of arousals or near arousals. Yours are getting in the range of severe PLM. About 80% of RLS sufferers also have PLMD.

The fact that motion decreases your discomfort indicates to me that you have RLS as well as PLMD. BTW arousals do not mean that the person wakes up. Usually arouses to level (stage) 2.

Doctors usually prescribe Klonopin for historical (traditional) reasons. However it is too long acting, most people (especially if they have to get up next morning) would be much better off with lorazepam or something similar which are much shorter acting.

I am puzzled by your ferritin level. :shock: What unit is being used? The minimum is supposed to be 20 nanograms/ml and the range goes up to several hundred. However, anything less than 50 nanograms/ml requires supplementation.

For comparison, here is mine:

*** RIA ***

Ferritin (range 28 - 464) 87 ng/mL

[The lower limit of the range is misleading because under 50 ng/ml, the ferritin is too low.]

You could lower your Mirapex to 0.125 twice a day. Spread over the day works much better.

You have been doing your share of research I must say. :wink:

One last word of advice. Make your sleep record as complex as you want to. But when you have one week's worth, go through it carefully, try to find correlations, emphasize those and get rid of the rest. No doctor I have ever known will go through a complex spreadsheet. Make yours conclusive and very simple.
I wonder whether you would be willing to complete a questionnaire which is part of our research project. Details you can find on General Topics Forum. If you would, please send me an e-mail and I e-mail you the form. It is "PRO BONO PUBLICO." :)
Jumpy Owl

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Postby brightventure » Mon Sep 06, 2004 4:58 am

I have questionaire and have not finished completing it yet.

test results indicate
my results: 5 L
units: ng/ml
normal: 10-232

Not sure this makes since now that I look at it. 5L vs ml. I'll have to call about it Tuesday.

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Postby jumpyowl » Mon Sep 06, 2004 5:11 am

I can save you a phone call. :)

They do state the units, which are the same as mine

What they mean is 5 ng/ml which is L(ow)

Their range is a bit different, but every lab has its own.

Indeed yours is so low that could be the main reason for your RLS/PLMD

The algorithm of RLS article states that aftere fifty years they are again looking into iron replacement by intraveous means (oral is less than satisfactory, although it works better if patient has real low ferritin.

I appreciate your working on the questionnaire. :oops:
Jumpy Owl

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Postby brightventure » Mon Sep 06, 2004 5:54 am

Thanks. Sleep Doc did mention that the tablets could cause stomach problems, and if I could not tolerate the tablets that I would have to look into the intravenous solution.

Doctor accepted the conservative method of trying lifestyle changes and ferritin supplements over meds. BTW even tho, doc prescribed and could only get ferritin tablets at the pharmacy, insurance did not pay for the ferritin supplements. 200 tablets was $26 out of pocket, $6 bucks a day for me.

Doctor mentioned that since mirapex and clonapin did not work and if find that still need med in future that would try nerontin (sp?).

I need to make a correction. Each tablet is 35mg not 300mg so 35mgx2. The box contains 300 mg.

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