Recording drug schedule and symptoms to track patterns and progress

[Karma]

ADMIN NOTE Quite often, we ask members to keep daily notes of their drug schedule and symptom pattern. This is important to see if any symptoms are adverse reactions to a drug -- which happens frequently. If you are requested to do this, it is essential information for us to help guide you off drugs.

 

This is a simple list format. Here's how to respond to our request for daily symptoms:

 

On 9/27/2016 at 11:49 AM, Altostrata said:

Keep notes on paper about your daily symptom pattern and drug dosing

 

Are your symptoms worse at any particular times of day? A symptom pattern that occurs regularly over several days could mean the symptoms are from withdrawal, other adverse effects of drugs, or something else you do on a daily schedule.

 

In the course of discussion in your Introductions forum topic, you may be asked to keep notes on paper of your daily symptom pattern, including when you take your drugs, their dosages, and any symptoms. We ask this because there may be something we can do to reduce the symptoms.

 

What we need to see for every single day over several days is what symptoms you get before and after you take your drugs. If you're not taking any drugs and have withdrawal symptoms, we still need to see your symptom pattern throughout the day:

 

The time of day, dosage, and severity of symptoms are essential information. Include

 

- Time and dosage for all drugs taken throughout the day, psychiatric and non-psychiatric.

- Following each dose, note any symptoms. If you are having a reaction to the drug, it may take hours for a symptom to show up -- that's why we ask you to keep notes all day long.

- If you're not taking any drugs, your symptoms throughout the day.

- Your sleep pattern. Since so many drugs disturb sleep, if you find you're waking in the middle of the night, it could be from a drug you took earlier in the evening. If you're not taking any drugs, there may be ways you can improve your sleep.

And so forth. A diary, in chronological order, looking something like this:
 
6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep

6 a.m. Woke with anxiety (but less than yesterday)

 

An appointments diary is perfect for this and can be bought at stationery stores. They have a page for each day with times for appointments which can be filled in with doses, symptoms etc as shown above. Or, you can copy and paste from a cell phone app -- but make sure the result is easily readable.

 

Please do not use spreadsheets, they are difficult to read online and some of us don't have Microsoft Excel to look at them.  You may link to a Google Doc or spreadsheet if you wish.

 

The following topics discusses ways to track your symptoms for your own use that are more complex. If a staff member requests you post daily symptoms notes, please use the simple list format, not the charts you might see below.

 

Also see Dr. Joseph Glenmullen's withdrawal symptom checklist Read this to identify withdrawal symptoms.

 

Daily Symptom Tracking Template (docx download)

Daily Symptom Tracking Template (pdf download)

---

 

Alto suggested that I start a topic on this because I've mentioned it several times to members.

I rate my symptoms daily on a scale of 1 to 10, 1 being "awful, I feel like I'm dying, I can't take it any more", 10 being "great, flipping fantastic!", a 7 is when I feel the symptom, but I can tolerate it and get through the day - so for me a 7 is acceptable. Before I decrement my dosage I want at least two weeks of 7 or better in my symptom ratings ... especially anxiety and depression.

I rate my sleep the next morning and I rate anxiety, depression, ringing in my ears, pain, etc. at night. In the morning I go through the list and rate my sleep from the night before - I make a note next to some of the other symptoms, e.g. Aches & Body Pains - slight pain in right wrist AM, Anxiety - none AM, Ringing in the ears - mild AM, moderate by noon - that way I have reminders of how I've felt throughout the day to accurately rate my symptoms in the evening.

It doesn't matter if my 7 and your 7 are different - this rating system is for you. Once you start thinking about how the specific symptom felt during the day compared to the day before, you will begin to see when a specific symptom is improving or deteriorating. I find it really helpful when I am trying to tweak thyroid treatment or determine when I'm through initial withdrawal symptoms associated with decrementing my dosage.

Below are all of the things I rate daily - note that some of these symptoms are no longer a problem for me and generally get a rating of a 10. But I started this in 2008 when I was healing from celiac disease and getting my thyroid treatment optimal from hashimoto's thyroiditis. I had bone and muscle pain, fatigue and energy challenges, so should any of those problems come back I want to be able to detect it. E.g. the wrist pain I have is tendonitis and for me it is an indicator of whether my thyroid treatment is optimal.

Aches & Body Pains, Anxiety, Appetite, Energy, Ringing in the Ears, Fatigue, Mood (flat, upside or downside of flat, joyful, irritable), Drowsiness or Sleepiness in AM or during the day, Night sweats/day sweats, and Bowels/Digestion.

You should rate your symptoms, these are just examples of my symptoms.

Karma

 

Edited September 21, 2021 by Altostrata
updated

[Rhiannon]

Karma, I do this too, and I'm always suggesting it to other people too. It has been really helpful to me.

 

Somehow my subjective assessment of my symptoms is just wonky. I think it's just another way that the meds and the withdrawal screw up my frontal lobe function, my judgment and such.

 

And I've seen the same thing happen with other people on the forums. You can tell by reading their posts that their symptoms have waxed and waned but they themselves seem to be unaware of the changes.

 

Now, after two years of tapering, I don't use the log as much as I did at first. I still use it, just not daily. I've found certain signposts--certain kinds of thoughts or sensations or behaviors--that I use as "markers" now, of how symptomatic I am or am not. But--that's with two years of practice. I wouldn't have gotten such clarity without the log, I'm pretty sure.

 

One of my withdrawal symptoms (actually one of my markers, now) is a recklessness about cutting more, an urge to cut more and faster. So having the chart (I use a chart, charting my daily dosages and symptoms together) has saved me from disaster several times.

 

I especially always recommend charting of symptoms for people who are holding. It seems really common for people to hold and then even though from their writing it's clear that they're more rational and calm after a while, they tend to claim that the hold hasn't done any good at all. I can't say for sure one way or another of course, so I always recommend keeping a log so they'll have some objective data to tell them if the hold is helping. (I generally advise to hold until the improvements plateau out--that is, the numbers in the chart are staying the same for a long time.)

 

So anyway. Thanks for bringing this up. Now there are two of us!

[ladybug]

I've started to do that too! For my sleep mostly so I can see if my sleep problems follow any pattern. I am trying to figure out a rating system now and then I will make monthly graphs to look for patterns.

[Altostrata]

I keep track of my sleep patterns on a calendar, with symbols:

 

X normal sleep

 

/ (slash) 6-7 hours

 

_ (long dash) 4-6 hours in long stretches

 

-- (broken dash) 4-6 hours broken sleep

 

☽ (half-round hoop, this is the best symbol I could find) 2-4 hours

 

0 (goose egg, zero) 0-2 hours

[Rhiannon]

Sorry, I should have given more detail. In my previous taper, I was dropping every month, but only had a day or two of "stable" in between. It was quite a rollercoaster, and not at all a success... This time I was wondering if there was a plateau duration I should be aiming for - not so much drop by the calender, but by "been stable for 7 days" or whatever.

 

This time, so far, I've had very minor symptoms which have passed, but I've only had one small drop. I've even had a positive improvement in one department.

 

Best wishes

Bubbles

 

I taper in a different way, smaller cuts more often, with intermittent holds when symptoms ramp up, so not sure if my experience is really relevant. But for me, I think just a couple of days isn't really long enough to be sure that I'm stable.

 

Stable is kind of relative anyway, for me, it's more like "definitely feeling much better almost all the time and not really wobbly at all." For me, it does take five days to a week of feeling that way before I really feel confident some actual stabilization and healing has taken place.

 

Hence the usefulness of keeping track of symptoms, because when I have my daily ratings of symptoms to look at, it's easier to see if there's a definite leveling off.

[strawberry17]

This is an interesting idea, I started using an XL spread sheet a few months ago to keep track of how my sleep was when going through a dreadful period, but after a while, for me, it just felt unhealthy to be scrutinising, almost like scrutinising it was make it a self fulfilling prophesy and making it worse, so I ditched it and went with the flow instead. Horses for courses I expect.

[Narcissus]

Yes, I think attending too closely to the sleep issue can worsen things for some people.

[Petunia]

Some online forms, worksheets and spreadsheets for help tracking medication and symptoms:

 

from a CFS/FM site:

 

http://www.cfidsselfhelp.org/library/type/log_forms_worksheets

 

another symptoms spreadsheet you can download:  http://lymerick.net/symptomdiary.htm

 

[mlrp]

There is a phone app (available free on android and iphone) for tracking symptoms that I tried using for a few weeks.

 

It's called T2 Mood Tracker. It was developed by a Defense Dept contractor to assist vets with psych health and traumatic brain injury issues.

 

The app comes with six pre-loaded issues: anxiety, depression, general well-being, head injury, PTSD, and stress. You can customize and add your own categories. It actually spits out an excel linear graph of your symptoms over time.

 

I ultimately found all the categories and sliders too fiddly to deal with on a daily basis. But I did use it for a couple of weeks or so and the resulting graph was interesting. Even though it wasn't right for me, it is highly rated and may be useful to some.

[LightEmergesFromDarkness]

I like the idea of keeping track of symptoms during the tapering process. i have been keeping track somewhat for a few mos now on a calendar of what days i get vertigo, and what days i do not. personally i find it kind of time consuming to rate the severity of my symptoms on a daily basis. and i dont want to over worry too much. my CNS was not completely stable before i started the taper on my depakote. but i feel that i need to get off the depakote before my physical health complications get any worse. at this point, after already having rapid tapers in the past, im not sure that holding my dose on my current taper is going to help stabilize my CNS. i think the damage is already done and i just need to make steady and small cuts.

[Altostrata]

You can of course modify the record-keeping for your own needs.

[Rockingchaircat]

If anything else a journal- gave me a tracking of what I was like before.  By typing down what I was feeling a year ago- (on Benzo buddies) it gave me a perspective on the progress I've made since.   For me the best structure- is what ever I felt like doing when I felt like doing anything at all.

 

If you feel like typing- do so. No one is going to judge you for typing an encyclopedia (just follow the guidelines the administrators set up). If you don't feel like typing- then don't. No recriminations. You can always catch up later if and when you feel like it.

Going back through my journal on BB- I can 'read between the lines' about the way I was feeling back then.

 

Your journal is for your benefit. It's a fringe benefit for the next round of folks who come across this site.  Your experiences may end up helping someone else. 

[KarenB]

I use the symptom checklist Petunia gave you at the top, and add up my score each day for an overall, comparable number. 

I also give each day a single word to describe it overall:  Awful, bad, ok, good, great. 

Then I make a small note about anything extra that might have given me worse symptoms eg PMS, family visiting, stress due to children etc.

[scallywag]

I've  been using the Glenmullen spreadsheet. It has been helpful to review the list as a prompt -- "Did I have this today?" I'm going to add a symptom to the top of my list -- "don't feel like recording symptoms" That way it's the first one I review and an easy way out.

 

Instead of a 0-10 scale for symptoms, I'm using 0=none, 1=mild, 4=moderate, 9=severe.  I could spend far too much time considering the difference between a 7 rating and an 8, so I do better with fewer, clearer categories.

[scallywag]

Glenmullen's list is set up to identify whether a symptom was present. You could use the checkboxes to insert a rating. 
 
I've created a simple word file (.docx) that could be used to track the timing of symptoms. 1 page/day or more if needed. 
 
Clicking this link will open a download page on the Mediafire site. If you're not using an ad-blocker, you may see a very busy page. Look for the big green rectangular download button:

Daily Symptom Tracking Template

PDF of Daily Symptom Tracking Template

Edited June 25, 2016 by scallywag
add PDF; clarify what happens when clicking

[Cicci]

I'm using the Android app "Dailyo" on my smart phone and think it is great for the purpose!

You can rate different things during the day, see statistics and charts for your entries.

[Terry]

On 2/16/2012 at 9:02 PM, Karma said:

Admin note: Also see Dr. Joseph Glenmullen's withdrawal symptom checklist Use this to track symptoms.

Daily Symptom Tracking Template

PDF of Daily Symptom Tracking Template

 

---

 

Alto suggested that I start a topic on this because I've mentioned it several times to members.

I rate my symptoms daily on a scale of 1 to 10, 1 being "awful, I feel like I'm dying, I can't take it any more", 10 being "great, flipping fantastic!", a 7 is when I feel the symptom, but I can tolerate it and get through the day - so for me a 7 is acceptable. Before I decrement my dosage I want at least two weeks of 7 or better in my symptom ratings ... especially anxiety and depression.

I rate my sleep the next morning and I rate anxiety, depression, ringing in my ears, pain, etc. at night. In the morning I go through the list and rate my sleep from the night before - I make a note next to some of the other symptoms, e.g. Aches & Body Pains - slight pain in right wrist AM, Anxiety - none AM, Ringing in the ears - mild AM, moderate by noon - that way I have reminders of how I've felt throughout the day to accurately rate my symptoms in the evening.

It doesn't matter if my 7 and your 7 are different - this rating system is for you. Once you start thinking about how the specific symptom felt during the day compared to the day before, you will begin to see when a specific symptom is improving or deteriorating. I find it really helpful when I am trying to tweak thyroid treatment or determine when I'm through initial withdrawal symptoms associated with decrementing my dosage.

Below are all of the things I rate daily - note that some of these symptoms are no longer a problem for me and generally get a rating of a 10. But I started this in 2008 when I was healing from celiac disease and getting my thyroid treatment optimal from hashimoto's thyroiditis. I had bone and muscle pain, fatigue and energy challenges, so should any of those problems come back I want to be able to detect it. E.g. the wrist pain I have is tendonitis and for me it is an indicator of whether my thyroid treatment is optimal.

Aches & Body Pains, Anxiety, Appetite, Energy, Ringing in the Ears, Fatigue, Mood (flat, upside or downside of flat, joyful, irritable), Drowsiness or Sleepiness in AM or during the day, Night sweats/day sweats, and Bowels/Digestion.

You should rate your symptoms, these are just examples of my symptoms.

Karma

 

I really like this.  My husband likes to rate things and says I should do it with how I feel each morning.  I've been doing this, though not recording it.  My hubby often asks me "what's your number today?"  I've been using the opposite way of rating though (according to how bad symptoms are), so that a 2 actually means a good day.  Your records are more comprehensive than mine.  I do make notes, but they're brief and not as specific as yours.  It sounds like you do a really good job of it.

[Karma]

You don't have to do it the way I do. It just needs to work for you so you can tell if you are doing better or worse. I recommend you record your experience so you can compare it. After all sometimes I can't remember how I felt 3 days ago. If you record it you have a comparison. I can't tell you how beneficial this has been for me on my journey and I still do it, today.

 

Karma

[firepink]

Has anyone tried the app called Symple? They let you track 5 symptoms & 5 factors (activities that may relate to the symptoms) a few times a day for free, but you have to buy the app for more than that. I don't think it would be useful for me to only track five things, but it seems like the full version would be a great & convenient way to keep track of symptoms & their causes - just wanted to check in before deciding whether to go for it. Thoughts?

[ChessieCat]

37 minutes ago, firepink said:

Has anyone tried the app called Symple?

 

I just did a google search and found this review:

 

https://bridgestreet.wordpress.com/2014/05/24/why-symple-is-the-best-symptom-tracker-ive-ever-used/

 

Some excerpts:

In the interest of disclosure, these folks aren’t paying me anything. I just find it immensely helpful.

I work in design, and I’ve had Lyme Disease for about 15 years. So intersections of tech and healthcare are always really interesting to me. This one isn’t just interesting to me on a theoretical level, though, it’s been really essential to my healthcare, on a personal level, since I found it about two years ago.

 

I tried a ton of systems – native apps, websites, good old pen and paper – and I found problems with all of them. Every digital system I found was hard to use, overly complicated, and difficult to customize. Pen and paper meant still having to type everything in somewhere to do anything with the data. When you have something you’re doing every single day, you really need to minimize the barriers to getting it done. Everything I tried felt like a chore, and I never stuck to them.

 

YOU CAN EXPORT TO A .CSV!

If you’re thinking “what’s a .csv?” then this isn’t going to be a super helpful feature to you. But if you love Excel spreadsheets like I do, you can take all of this incredibly useful data the app collects, and you can organize it however you want. I set mine up so that I can see averages for each symptom week to week, or month to month, and an overall average for both.

[ChessieCat]

This is the only information I can find which mentions a price and it doesn't mention whether it is a once off or monthly cost.  I don't have a smart phone so I can't even download it so if anyone gets more information, please post about it.  Thanks.

 

Seller:  Symple Heath Inc

Size:  38.3MG

Category:  Health and Fitness

Compatibility:  Requires iOS 9.0 or later. Compatible with iPhone, iPad, and iPod touch

Languages:  English

Age Rating:  Rated 4+

Copyright:  © Symple Health

Price:  Free

In-App Purchases:  Symple Complete $9.99

[firepink]

Thanks! Sorry for not responding sooner, I missed the notification that you'd answered.

 

From what I understand it's $10 one time. I went ahead and grabbed it. I'm working on fine tuning what exactly I think I should be tracking. As far as I can tell you keep track of the factors once per day (you make a list and can choose that you did it or not) and then you can keep track of your symptoms up to every 6 hours (you click on the appropriate choice of none / mild / moderate / difficult / severe). You can keep written notes, too, but I don't think I'm going to use it for that. So far it's really fast to check in, but of course the trick is to actually do it - so the jury is definitely still out as to whether it's going to end up being useful for me. Fingers crossed!

[Superwoman]

I found a calendar app that works good to record symptoms. It is called Agenda 2019- Day Planner.  Seller Nadeem Munawar.  It has a picture of a an agenda planner.  Note: I have an i phone. Not sure if app is available for other phones or not. The app is simple and easy to use. Not a lot of bells and whistles.  Recording symptoms in a notebook was not working well for me because I didn’t always have a notebook on me. However, I usually have my phone on me. Hope this helps 

[Superwoman]

The above app also has a “speech to text” feature.  You talk and it types it for you. I have not tried it. 

[LarryS]

I thought it might be helpful to give an example of providing oneself with a scoring system for tracking a symptom that one may have while tapering off a drug.  Having a scoring system in place that one can periodically refer to, will help one to be more consistent in tracking a symptom.  You may start by looking at other scoring systems to get an idea of what you would like to use.  I looked around on the internet for awhile and found only a small amount of information.  I took what I learned and thought about how the symptom may progress from least to worst symptom.  It took me several iterations to obtain the scoring I felt was most reasonable for me.  It is subjective to feelings on any day at best.

 

Since many of us feel “fatigue”, I will give it as an example.  A “1” represents no symptom.  A “10” represents the worst symptom.

 

1                   No fatigue

2-3             Minor fatigue after noon

4-6             Mild to moderate fatigue all day

7-8             Effects ability to think/ concentrate

9                Naps on and off all day

10              Bed ridden fatigue

 

Hope this helps someone.