Neurologist

[Mary1959]

I have just had an hour appointment with the neurologist, he's advised I detox from triptans and cocodamol for a month, as he thinks I've got chronic migraine overuse headache. and put me on a 3 month waiting list for the new medication available. Has anyone got any advice, how I cope with awful migraine pain, without tablets? I have an elderly dad to care for, and can't just go to bed! I've tried not water bottle, cold mask, exercise in the past, but nothing seems to work. Thankyou

[Cat00]

Hi Mary1959, this is what we've been saying you'd have to do for quite some time now. I'm afraid there's no escaping the pain, medication "holidays" as they stupidly call them are grim. I have 2 young children and migraines 50% of time as mine are chronic, you just have to try and take it one day at a time. A month is actually shorter than they used to make you not have meds for at least, in my day it was from 6 weeks up to 3 months.All the things you have tried are the things I would do I'm afraid, hot water bottle and exercise, the only thing I do extra is drink coffee. Try not to worry about the future if you can, migraines often get worse before they get better so if it's bad at the beginning it's not necessarily an indicator of how they'll be when things settle down.

[Mary1959 in reply to Cat00]

Thankyou for your reply, I haven't been brave enough in the past to do it for long, but I'm going to persevere this time.

[Cat00 in reply to Mary1959]

Hopefully it is something you'll only have to do once!

Unfortunately for me my migraines have been chronic for more than 20 years so I just have to live with that level of pain all the time. But if there is a chance yours are medication overuse linked then that will ultimately be the fastest path to a life with less pain. Good luck!

[Mary1959 in reply to Cat00]

Thanks Cat, I hope one day you find something to help you. Time will tell if this detox works for me. Take care

[md5299]

Do you sleep with your elbow/s above your shoulders?

[Mary1959 in reply to md5299]

I don't think so but maybe in the night I might?

[Florapaige]

There are devices you can try like cefaly or migraine pain reliever from Lloyds pharmacy. They are like tens machines to put on your head. They are expensive so worth looking on eBay or I managed to get mine in a sale from Lloyds for £15. It doesn’t always work but recently I’ve managed to go 3 weeks without pain relief

[Mary1959 in reply to Florapaige]

Thankyou for you're reply, I will look into it. 3 weeks without pain relief sounds wonderful!

[Xandi2]

The cefaly device is good. Can you get a prescription for rimegepant? It doesn't cause medication overuse headache. I don't know if you're in the states or the UK but I'm the UK and I pay privately for it. Can you speak to your neurologist about that? You can use it acutely. Have they allowed you to use ibuprofen? If you haven't been using this for your migraine attacks before so it's not part of your medication overuse headache you can usually use this to control the pain whilst your detoxing. I can't believe they've left you with no advice, especially as it's triptans and codeine.

[Mary1959 in reply to Xandi2]

Thankyou for your reply and advice, I really don't know how I'm going to cope, going without anything, I understand the principle of detoxing but I think I'm going to do it gradually, so I can stick with it. The neurologist wasn't at all sympathetic, and just said to stop everything, including caffeine. I haven't had ibuprofen, so I will give that a try. I just wish I could remove my head.I am in the u.k, did you have to go through your g.p for rimegepant?

[Xandi2 in reply to Mary1959]

No I had to pay privately with the national migraine centre for a prescription, it was £156 for the prescription but if it works for you I honestly think it'll be worth it, the pills are expensive too - look online and find who does them cheaper. I don't know what their appointment waiting list is though so any private Neurologist or headache GP can give you a prescription, if you call around, they should be able to do an appointment over zoom too. Look at the protocol for ibuprofen for coming off triptans or codeine, I think you take them pretty regularly over the course of the day for a few weeks. Poor you what a nightmare. Look at the cefaly too - it's £400 but it's so good when you have migraine. They also do a money back guarantee if you're not satisfied after 60 days - they take something like £58 off, but I've used mine so many times. It's very very good.

[Mary1959 in reply to Xandi2]

Thankyou, that's all really helpful. You've given me some hope. I'm glad you've found something that helps your pain. Take care

[troy04 in reply to Mary1959]

When neurologists say not to take painkillers, Ibuprofen cannot be an option 😒

[troy04 in reply to Mary1959]

but that neurologist talked for an hour. So even though he lacked sympathy, it suggests he is taking it seriously. I am hopeful he would prescribe some of the newer medications in your next review

[Mary1959 in reply to troy04]

Yes it was probably just his way, hopefully they will give me something new to try. Hope you're having a migraine free day, I'm trying the I've pack and hot water bottle at the moment. thankyou for your advice

[troy04 in reply to Mary1959]

Thanks but migraine free day is a luxury for me which doesn’t happen that often.

[Mary1959 in reply to troy04]

😔sorry to hear that, same here.

[Discodog]

hi mary

Could try going on a v low carb diet - worked amazingly for migraines for me for one month then they returned

Helped me get out of the overuse cycle though and that’s an amazing feeling

Good luck

[Mary1959 in reply to Discodog]

Will look into that, thankyou for your advice

[Migrainemum]

Definitely recommend the Cefaly device if you can afford it. If not, the Lloyds tens machine is worth trying. I’m a long term chronic migraine sufferer and the Cefaly helps to reduce my pain levels. I’ve used it while detoxing from triptans and pain meds. It’s still difficult but doable.

[Mary1959]

Thankyou for your reply, I'm going to try the default device.

[Uppingham]

Hello,

You could ask for a greater occipital nerve block and/or a prophylactic while you are waiting.

Another option would be to try buccastem, or paracetamol + aspirin + caffeine, though these should not be taken frequently.

[Mary1959 in reply to Uppingham]

Thankyou, I will look into your suggestions.

[troy04 in reply to Mary1959]

Your neurologist said not to take painkillers, so Paracetamol/ Aspirin cannot be an option 😒

[Uppingham in reply to troy04]

It says "detox from triptans and cocodamol".

[troy04 in reply to Uppingham]

Cocodamol has paracetamol. Besides, when overuse headache is treated, painkillers of any type is usually not advised by doctors.

[Wrexham16]

Hi I was not allowed any painkillers at all when I did my 3 month withdrawal a long time ago so I would be careful about that. I am a chronic migraine sufferer and I recently looked into the cefaly but I couldn't afford it. I don't know what the Lloyds machine is but I bought an actual Tens machine which is called a Mynd. It still cost over £90 but for me it has been life changing. It's not a cure obviously but I can cope with almost no painkillers and far fewer triptans. Everyone is different though so do read the reviews if you're thinking of getting one.

Good luck

[Mary1959 in reply to Wrexham16]

Thankyou for your reply and advice. I'm going to try everyone's advised, apart from painkillers and try to persevere.

[troy04 in reply to Mary1959]

and don’t forget the ice 🙂 if you get an ice pack or even frozen peas, just hold it to the pain area - sometimes it works

[Mary1959 in reply to troy04]

Thankyou yes it does help. I've now got a face to face appointment on the 30th November👍

[Leylabell53]

ive never done a detox despite chronic migraines. Life’s too short. Instead i go back to the doctor again and again looking for new treatments. I was put on Aimovig which broke the chronic migraine but only reduced my migraines by about a quarter. I took Aimovig for about a year without great results and thought I’d come to the end of the road. But my wonderful specialist said sometimes patients respond better to other CGRP treatments and put me onto Emgality. After a year this has cut my migraines in half and November was my best month yet with almost 3 weeks free from migraine. My advice is not to give up, keep going back to the doctor and keep looking for new treatments.

[Mary1959 in reply to Leylabell53]

Thankyou for your reply and advice. The nurse says I can still take my triptans if I have a migran e while on the aimovig. I understand what you're saying, you have to do what's best for you to give you a decent quality of life. Hope you continue to improve.