migraines

[Phojespa]

I take Hydroxyurea 1000mg daily 75mg Clopidogrel daily for ET jak2 positive

I have had a bad headache sore on right side temple, for 10 days doctor sent me to hospital for tests and they just say it’s a bad migraine been given some Sumatriptan, has anyone else taken it bit apprehensive about taking it.

[hunter5582]

The triptans have been used for a long time to manage migraines. They are generally well tolerated. I have a different type of migraine that responds quite well to a CGRP inhibitor (Ubrelvy or Nurtec). That would be another option is Sumatriptan does not work for you.

It is worth noting that if this is a new symptom, then an HU adverse effect is also a possible cause. That would be something to review with a MPN Specialist if applicable.

Hope you get this sorted ASAP.

[Phojespa in reply to hunter5582]

Thank you

[Sksarj in reply to Phojespa]

Yes Phojespq I have been prescribed sumatriptin for my cluster headaches and they do work but as I am well over the age for which they are recommended I only use occasionally, as I use other non invasive methods now.Sue

[Phojespa in reply to Sksarj]

Thanks Sue, I had had TIAs over 20 years ago before I got diagnosed with ET so that’s why I’m a bit apprehensive about taking them.

May I ask what other methods you use as I would love to try something different.

Thanks Phil

[Sksarj in reply to Phojespa]

Hi Phil after years of suffering I was finally diagnosed with Cluster headaches around 3years ago. After trying various tablets and sumatriptins I opted for using Oxygen as it had been approved by NICE for Cluster headaches and Gamma Core a non invasive vagus nerve stimulator. Recently I have been prescribed melatonin which is also very helpful. There is no cure but being able to manage this alongside my MPN is a real bonus. Good luck, Sue

[Yarnhabit]

hi

I have suffered from migraines for years, about 10 years ago when it was most severe I was given Sumatriptan and used it off and in when the worst headaches occurred until 6 months ago. No major side effects.

In that time I looked at the triggers and changed my diet, got a dog so more excercise, looked at my sleep, my water consumption etc, and the migraines did become less debilitating and less frequent. But with a stressful job and working 60 hours a week I still had them frequently but not as bad.

18 months ago I was diagnosed with ET with a platelet count of 650, it has since progressed to 950+. It seems I have had signs for the last 10- 15 years but as I said I have had migraine’s since 10-11 years old, I am 58.

As my platelets have risen I have have had pain behind the eyes, visual disturbances and more migraines again. I am on a watch and wait 75mg of asprin treatment from my Haemotologist.

Since she isn’t interested in any thing other than my blood count I went to my GP and she changed my medication to a preventative one, not the one I had when I was younger before the Sumatriptan but one used for blood pressure but a low dose upto 12mg that can be used for migraines.

I started on 4mg and have gone upto 8mg since the summer. This has helped with reducing my daily pain and the frequency and severity of migraines. I have gone from 2-3 a month to 1 every 2-3 months. My blood pressure which has gone up due to age/ ET is also much better.

So in short, I have taken Sumatriptan whilst having ET and was ok, apart from it knocking me out and feeling off the next day but it is not necessarily the only option. I also had an MRI scan at the time just to check if the years of migraines and severity/ frequency and all came back fine. My GP is great.

I have also stepped back at work and been very clear about my boundaries and they have been supportive as has my husband who is well aware of the impact fatigue has on me and as a factor in migraines.

I wish you well and sincerely hope it works, however it is a bit like locking the door after the horse has bolted and I am more in favour of preventing the damn things!

Regards