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tVNS UK

Twenty weeks, week by week

What each stage of the Twenty Weeks track usually feels like, from the baseline diary to the decision at week 20, so you know what is normal before it happens.

Twenty weeks, week by week

This page is for people on the Twenty Weeks track, and for anyone deciding whether to start it. It says what each stage usually feels like and what happens in it, in the order it happens. It is the same page for everyone, it stores nothing, and it is not medical advice. The programme itself is described on How to access tVNS, and the evidence on the epilepsy page.

Twenty weeks is the honest length of this. Some people notice something around week 12. Many notice nothing until later, and some never do. Every stage below is built for that wait.

Before day one: the baseline weeks

Eight weeks of seizure diary before the device arrives. We post you a printed diary after the suitability call, laid out the way epilepsy nurses are used to: one line per seizure with the time, the type, how long it lasted and a note. If you already keep a diary, carry on with it; we copy the totals across.

The baseline is the comparison everything else is measured against. The more honest it is, the more the twenty weeks can tell you. Your medication should be stable through these weeks, so that any change later can be read clearly.

Two other things happen in the baseline weeks. The letter for your consultant or epilepsy nurse travels with the diary, for you to hand on or send. And at the end of the baseline, not before, the deposit is taken and the device is dispatched so that day one falls on a Monday.

Week 1

The box arrives with the device in the manufacturer's packaging, a welcome letter, a one-page first-evening sheet, a routine card, 28-day tick cards and spare silicone rings. Charge the stimulator, read the sheet, and leave the electrode in its box until the fitting call.

The fitting call is by video and takes thirty to forty-five minutes. We get the electrode sitting in the right place in the left ear, bring the intensity up to a clear, comfortable tingling and then one notch back, and write your routine on the card in your words: the thing you do the session after, where the session goes when the evening goes wrong, and the thing that only happens with the electrode in. You get the skin-break number, and we pair the manufacturer's app if you want it.

The same evening, twenty minutes: electrode in, tick, out. That is day one. Then one hour twice a day for the rest of the week.

What the first week usually feels like: the electrode takes a few goes to sit right, and then it just does. The tingling is strange for a day or two and then ordinary. Some redness or itching at the ear is common and settles; cream between sessions helps. A mild headache or a night of unsettled sleep happen and pass. A letter arrives midweek that says all this again, because the first week is the one people want a word about.

Two things do not wait: broken or sore skin at the ear means stop and call the skin-break number; dizziness, nausea, ringing in the ears or a change in heartbeat during a session means stop, let it pass, and call us before the next one.

Week 2

The setting that felt strong on day one feels mild by now. That is your skin getting used to it, and it is the point of the week 2 call: we reset the intensity together. Please do not turn it up yourself before then; if it fades to nothing, ring us.

By the end of week 2 the sessions have built from one hour twice a day to two to four hours a day, in the slots on your routine card. The tick card by the kettle gets a tick after each session, and the diary gets its session squares. The row filling up is the point.

Week 4: the wobble week

Most people wobble around now, and this is the week we expect it. The novelty has gone, nothing has happened yet, and an ordinary busy week has tested the routine for the first time. That is not a sign of anything except that it is week 4.

A refresh pack arrives at the start of the week: a fresh set of silicone rings, a new tube of cream, and a letter. Then the week 4 call. If sessions have slipped, we treat it as a design problem, not a willpower problem: the anchor, the fallback, the bundle, or how the hours are split. We change the one that is wrong and you write the change on the routine card. People who have missed days are exactly who this call is for.

Tingling, redness and the odd headache have usually settled by now. Anything that has not, or is getting worse, is a call today, not a note for the next review.

Week 8

The first diary review, and no judgement yet. On the week 8 call we go through the diary together and fill in a one-page summary sheet for your consultant: days used, usual hours, diary totals against the baseline, side effects, and the questions you want to ask. You take it to your appointment. We hold no copy.

No signal is expected at week 8, and we say so before you ask. Pads are the other thing we check: the tick cards tell you when to tell us you are running low.

Week 10: halfway

A postcard, hand-written and signed. Ten weeks done, ten to go, same routine, same hours. It goes on the fridge.

Week 12

The signal check. Some people can see something in the diary by week 12; for many there is nothing yet, and both are normal at this point. Neither is the answer, and neither changes what happens next.

On the week 12 call we fill in the second summary sheet together, and we confirm the date of your consultant appointment, which needs to fall before the week 20 call so that their view is in hand for the decision. Then the second half: same routine, same hours, to week 20.

Week 16: preparing for your review

A letter at the start of the week. Nothing changes in the last four weeks; weeks 17 to 20 count as much as weeks 1 to 4 did. Before the week 20 call: your consultant appointment, with the diary and the week 12 summary sheet, and the app log on your phone if you use it. If it would help, we are glad to speak to your consultant directly.

The letter also sets out what the week 20 call is, so nothing on it is a surprise.

Week 20: the decision

We name the outcome plainly, as one of four, with your consultant's view and your own side by side on the decision sheet in the diary:

  • Responder. About a 50% fall in seizure frequency against your baseline weeks.
  • Partial responder. A change that matters to you and your consultant, short of that threshold.
  • Non-responder, with good use. No change, with sessions at or near the hours agreed. A real answer.
  • Adherence non-responder. No change, with sessions well below the hours agreed. Not a treatment failure; the answer is not yet known.

None of the four is a wrong answer. Then the decision, which is yours and your consultant's: continue on the same routine, change something, or stop. Stopping has no taper and no withdrawal effect. If the answer is stop, the device goes back to us and we send the label the same day.

Afterwards

If you continue, pads and electrodes arrive on a consumables plan without you having to think about it, and we check in once a year. Anything about medication or, later, about reducing the hours belongs to your consultant, and we route it there.

If you stop, the return is as described on the programme page, and the diary stays yours.

Where to go from here

This page is for information only. It is not medical advice. Any decision about tVNS should be made with your clinician, who knows your full medical history.

tVNS is a Class IIa medical device manufactured by tVNS Technologies GmbH, Germany. Distributed in the UK by Anatomical Concepts UK Ltd.