andy1974: intro and a question about a symptom tracking app

[andy1974]

Hi there, 

My name is Andy. I'm a 45 year old tech entrepreneur and University lecturer and i've suffered from anxiety and depression since I was 20. 

I recently came off Mirtazapine and had a rough time. I was surprised there were not any good symptom tracking tools to support people going through withdrawal so I've decided to make one and I have been working with a designer to develop a prototype. Once developed, the app will be available in the UK for free. 

I would love some feedback on the prototype designs from anyone who is interested and was wondering if that was something that would be ok to do using this forum? 

If it is I will post a link to the designs with a mechanism for providing anonymous feedback.

Many thanks,

Andy

[Altostrata]

Welcome, andy.

 

When did you last take mirtazapine? How did you go of it? How are you feeling now?

 

There is an app under development, BrainZaps, see https://brainzaps.io/app-2/

 

The developer is also in the UK. You two should team up!

[andy1974]

Thanks!

I stopped at the start of October last year after being on 30mg for 9 months. I tapered a little but it was hard because splitting the pills into bits is not accurate. I had lots of symptoms including severe anxiety, insomnia and headaches. It took about 3 months to start feeling better and right now I'm doing ok. 

I'd be very happy to chat to the UK developer if you wanted to put me in touch but back to my original question. Would it be ok to post the designs for the app on this thread and invite users to provide anonymous feedback using something called Adobe XD? I've built quite a few digital products before and getting early feedback is really valuable. 

If you don't think its appropriate for this forum that's absolutely fine. 

Many thanks

Andy

 

[Altostrata]

Yes, you can start a topic about the app in the Events, Controversies forum. You'll have to keep an eye on it in case there are questions.

 

If you and the other developer can collaborate, that might be all the better to bring an app online. He and I have corresponded.

 

On 4/26/2020 at 12:32 AM, andy1974 said:

I had lots of symptoms including severe anxiety, insomnia and headaches. It took about 3 months to start feeling better and right now I'm doing ok. 

 

So you more or less went off cold turkey? How did the withdrawal symptoms resolve?

[jozeff]

The development of this app is a fantastic idea!

 

I've been struggling to keep track of my symptoms for over two years. I've created some Excel sheets but forget to use th half of the time. An app would be awesome. Every evening thinking about the day and filling in some questions in an app. That would be great.

 

I would want to participate in a trial version.

 

I used some apps before but they are all very commercial and not very useful for only symptoms.

 

 

Cheers

 

Jozeff

[andy1974]

Thanks Jozeff!

I'll post a link to a prototype in the next week or two. Any feedback would be fantastic.

Andy

[andy1974]

On 4/29/2020 at 8:39 PM, Altostrata said:

So you more or less went off cold turkey? How did the withdrawal symptoms resolve?

Not exactly. I dropped down to taking the medication every other night for two weeks and then broke the pills in half and took them every other night at half dosage for another two weeks. 

I came off Gabapentin (for nerve pain) at the same time but I'd not been on it that long. The symptoms that were clearly from withdrawl resolved in about two months. What I found hard was not knowing if something was a genuine symptom of withdrawal or my previous illness returning. That said I feel better off the drugs that on them. I'm not anti antidepressants, I think they play a really valuable role. I just don't think we know enough about them and what effect they have when you come off them. And what we do know is not communicated well to patients. 

[jozeff]

What I'd like to use in an app is the possibility to enter:

 

-Date

-Dosage that day

-Type of medication

-A couple of questions/columns to fill in a grade like 0 to 5 with symptoms like anxiety, depression, derealization etc.

-Maybe a weekly or monthly overview of certain symptoms increasing/decreasing.

 

What helped me the most was the realisation that my situation had been worse in the past. When I looked at my schedule I realized that the current day was not always the worst iny life although it often felt like it.

 

Just some thoughts....

 

Happy healing and let us know how you are doing!

 

 

Cheers

 

Jozeff

 

 

[sunnysideup69]

I'd be interested in testing out a prototype, whilst stabilising.

[Altostrata]

9 hours ago, andy1974 said:

Not exactly. I dropped down to taking the medication every other night for two weeks and then broke the pills in half and took them every other night at half dosage for another two weeks. 

 

What happened as you were tapering mirtazapine in this fashion? We very much do NOT recommend skipping doses to taper, this induces terrible withdrawal symptoms and has to be indicated in any app!

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

[andy1974]

Yes, I wouldn't recommend doing it that way either. Part of the motivation for creating the app is to get reliable information into the hands of patients. Information that I found difficult to find (I wasn't aware of this website at the time)

The app will be in line with NICE guidelines

https://www.nice.org.uk/guidance/cg90/chapter/1-Guidance#stopping-or-reducing-antidepressants

 

 

[Altostrata]

The NICE guidelines offer very minimal advice:

Quote

 

1.9.2 Stopping or reducing antidepressants

1.9.2.1 Advise people taking antidepressant medication that, before stopping it, they should discuss this with their practitioner. [2019]

1.9.2.2 Advise people that if they stop taking antidepressant medication abruptly, miss doses or do not take a full dose, they may have discontinuation symptoms such as:

• restlessness

• problems sleeping

• unsteadiness

• sweating

• abdominal symptoms

• altered sensations (for example electric shock sensations in the head)

• altered feelings (for example irritability, anxiety or confusion).
  
  Explain that whilst the withdrawal symptoms which arise when stopping or reducing antidepressants can be mild and self-limiting, there is substantial variation in people's experience, with symptoms lasting much longer (sometimes months or more) and being more severe for some patients. [2019]

1.9.2.3 When stopping an antidepressant, gradually reduce the dose, normally over a 4-week period, although some people may require longer periods, particularly with drugs with a shorter half-life (such as paroxetine and venlafaxine). This is not required with fluoxetine because of its long half-life.

1.9.2.4 Inform the person that they should seek advice from their practitioner if they experience significant discontinuation symptoms. If discontinuation symptoms occur:

• monitor symptoms and reassure the person if symptoms are mild

• consider reintroducing the original antidepressant at the dose that was effective (or another antidepressant with a longer half-life from the same class) if symptoms are severe, and reduce the dose gradually while monitoring symptoms.

 

 

Since the NICE guidelines send people back to their practitioner if they encounter any problems tapering, how is the practitioner supposed to know what to do?

This site exists specifically because practitioners 1) don't know how to taper (guidelines do not tell them how large reductions should be or at what intervals; as you can see NICE guidelines imply tapering over 4 weeks, or 25% per week); 2) have even less of a clue when tapers go wrong.

So other than advising people to see their practitioners if they have withdrawal symptoms, what is the value-add of the app?

The NICE guidelines, by the way, are under review.

[andy1974]

9 hours ago, Altostrata said:

So other than advising people to see their practitioners if they have withdrawal symptoms, what is the value-add of the app?

 

Sorry, I don't think I've done a good job explaining how the app will work.

 

The purpose is not to provide advice. The main aim is to provide users with a low friction way of recording symptoms of withdrawal and presenting them with insights that show how their experience compares to others. Data to drive these insights will come from two sources. 1) Ongoing clinical research and 2) the experience of other users of the app. The assumption that I want to prove is that participating in research into the patient experience has a therapeutic benefit. A good way to sum up my approach is “Research as Therapy”. I’m working with an NHS consultant psychiatrist who specialises in this area. 
 

Regarding tapering, the app will not provide guidance as to how to do it but will point users to other sources of information, such as your website. The working title for the app is currently Taper but as it doesn’t have much to do with tapering I am not going to stick with that name. I only mentioned NICE as they recently updated their guidelines and they are moving in the right direction but I completely agree they are still woefully inadequate. I’m hoping that the data I can collect will be able to influence future guidelines and get practitioners to realise the seriousness of antidepressant withdrawl.

 

There will be no social aspects to the app and it will be 100% anonymous (requiring no login). 

 

Hope that makes sense. 

 

[Altostrata]

Thanks for the info!