Neurologist Tracking

• 8th Jan 2025 | Dr Tim Yates

• 28th Jan 2025 | Dr Tim Yates

• 28th Jan 2025 | National Migraine Centre

• 5th March 2025 | Dr Tim Yates

Wed 8th Jan 2025 @2pm | Initial Zoom Appointment with Dr Timothy Yates

Appointment Notes:

Hemicrania continua Possibility:

• After reviewing my symptoms he mentioned there is a small chance of it being Hemicrania continua (HC) - which is a rare, benign headache disorder that causes a severe, continuous headache on one side of the head. It's uncommon but there's a 5% chance. The only way to diagnose this is by taking a special tablet or injection. The tablet form would not be suggested for me due to my ulcerative colitis.
  This option will likely be explored if the below preventives all fail.

Discussion around my current preventative treatment from my GP:

• He said you've completed Propranolol. It gave you unacceptable side effects (the chest pain) before even the maximum dosage, so that's 1 preventative ticked off the list as failed.

• Regarding Candersartan, he said the GP got me into a bit of a mess by having me take this then starting Nortriptyline at the same time before going to the max dose of Candersartan (16mg).
  His advice is to leave my Nortriptyline dose as is at 30mg and to stop increasing it. Then to increase my Candersartan dose from 14mg to the max 16mg dose. Then to remain on Candersartan for 8 weeks at the max dose.

• If no improvement, or side effects develop, then stop the Canderartan and continue with Nortriptyline, increasing by 10mg week by week up to 70mg. Once I get to 70 mg, remain at that dose for 8 weeks or until side effects occur.

If there is no improvement after the above, then the below preventative options will come into play:

Preventative Options:

• Botox which costs £550 every 3 months. It would be one round of 31 needles every 3 months. He said it's just a 5 minute procedure. This was his most recommended path to begin with.

• Anti-cgrp injections as a secondary option. He mentioned they can cause constipations but are slightly more effective than botox. It would consist of 3 injections costing a total of £720 and you self-administer 1 per month. They get sent to your home by courier for self-injection and must remain in the fridge.

• Note: NHS (once you're referred) would only give you one treatment at a time, so you could have one on the NHS and one private for cost efficiency but also for maximum effectiveness.

• There is an oral preventative purely for migraine that you take once per night too. This is another option, but it doesn't stay in your system as long (hence the nightly application) and can cause constipation.

How long would you be on a preventative?

• Once you've stabilised for a period, you're encouraged to stop preventative treatment. Botox or home injections usually continue on for 2 years.

Intermediate Options (bridging therapies):

• He mentioned there are bridging therapies. A Nerve block injection is one and it can offer 60% of people some benefit. It would work in 2 weeks and cost £200.

• Another bridging therapy is an infusion. Infused for 30 mins, Vyepti. A healthcare professional would administer Vyepti as a 30-minute infusion into a vein every 12 weeks. The recommended dose is 100 mg, but may be increased to 300 mg depending on the patient's response. The 100mg dose would work for 3 months and cost £750.

Appointment Actions

• He will organise an MRA MRI scan to check my blood vessels then we'll have a follow up appointment.

  • MRI Brain and MRA with Contrast, MRI IAM Both

  • Date of Scan: 11/01/2025

  • Results: To be reviewed during follow-up on 28/01/2025

Acute Treatment:

• He said my current acute treatment plan was ok (1g Paracetomol + Prochlorperazine), but he said i shouldn't use the above more than 10 days a month.

• He also advised increasing my Prochlorperazine dose from 5mg to 10mg.

• He also advised adding Celecoxib to my acute treatment plan. This requires prescription from my GP. It is an NSAID but should be tolerable with my Ulcerative Colitis.

• He will also perscribe me Rimegepant but just for acute treatment given it's £20 per tablet.

Tue 28th Jan 2025 @2:30pm | Follow-up Zoom Appointment with Dr Timothy Yates

Appointment Notes:

Agenda:

• Review MRI & MRA Scan results

• New Treatment

MRI Scan results mainly normal. Being referred elsewhere for facial spasms.

New Treatment Options

1. Botox: £550 every 3 months ( 2 sessions ever 3 months to determine if effective) 70% effective

2. Self-Injection every month (Ajovy): £720 for 3 months (if Botox not effective) 65% effective

   1. Mild constipation

3. Atogepant tablet: taken once a day at night. 1 dose no change. 60% effective: £250/£275 p/m

   1. Milder constipation

4. Vyepti: 100mg infusion every 3 months (£750) (65% effective but works faster)

Recommendation:

• Have Botox and have Vyepti 100mg on the same day

Appointment Actions

• Wind down the Candersartan

• Book a session of Botox plus 100mg Vyepti.

  • Repeat Botox every 3 months & Vyepti optional

• Book follow-up consultation in 8 to 9 weeks time or sooner if things get worse.

Tue 28th Jan 2025 @6pm | Initial Zoom Appointment with National Migraine Centre

Appointment Notes:

Agenda

• Initial consultation

What was discussed:

Cheap Preventative Treatment Options:

• Cheap Option: Try a better tolerated Beta blocker.

  • Metoprolol or Atenolol

  • Maybe not give up on BETA blockers

• Cheap Option: Topiramate (most recommended of the bunch)

  • One of the most effective of the cheap preventative options.

  • Either you love it or you hate it

  • 25mg until you reach 50mg twice a day. Increase by 25mg every 2 weeks.

  • Can be on GP NHS

  • Also an apetite suppressant

• Pizotifen

  • Prescribed in children for migraine

Advance Treatment Options:

• Avoid Aimovig because of my UC

• Ajovy (same as what Tim said)

• Vyepti (same as what Tim said) (could lead to a rapid resolution)

Dr Simone Gregoire from the Nation Migrain Centre didn't recommend the Botox + Vyepti route at the same time. Stating you wouldn't know which of the 2 were actually helping you, and given they're administered once ever 3 months, you could start to slip off again at the end of month 2.

Her recommendation was Atogepant which is a single dose tablet.

Appointment Actions

1. Wean off the Nortriptyline by 10mg per week or

2. Once you get down to the 20mg dose of Nortriptyline you can begin taking Atogepant

My Final Decision:

• Begin Antogepant

• If not improvement after taking it for 1 month, then go down the Botox + Vyepti route with Dr Yates.

Wed 5th March 2025 @3:30pm | Follow-Up #3 with Dr Tim Yates

Appointment Notes:

Agenda

• Discussing having been on Atogepant for almost 4 weeks and next steps.

What was discussed:

• Combining Atogepant with Botox as I feel Atogepant after 4 weeks has led to some minor improvements but not enough to improve quality of life.

• Constant chronic migraine persists daily 24/7.

Appointment Outcome

1. Botox Booked in with Dr Manjit Matharu for Saturday 22nd March @3:45pm.

   1. UNTIL Marylebone, (ENTRANCE ON)- 1 Orchard Street, London, W1H 6HJ

2. Follow-up Consultation with Dr Tim Yates to be booked 10 weeks after Botox.

3. Botox should be repeated every 3 months.

   1. Impact should be noticed after second round.

   2. If not improvements after round 3 then stop, otherwise continue for 2 years and reassess.

   3. Cost £550 per round.