How Do You Stop Being Scared of Your Next Migraine?

[NetroPhil]

I know I've been here before in a previous post. But I can't help but worry. How do you stop being scared of your next migraine?

I don't tend to have that many migraines. At one point I had them almost every half a year. And after that I was lucky enough to not have a migraine for an entire year - what I believe is called full remission - I was so happy, going along thinking that I'd never have another migraine again.

Then after the year away from them, I got one at work. Not a problem, I thought, I'll just take the pills the doctors gave me. So next time I had two in the space of a week of each other. The first one was okay too, even, but the one a week later really affected me. The pills didn't work.

And now I'm scared.

Scared of seeing weird spots and things. Scared of my hand suddenly going numb. Scared of waking up in the middle of the night all alone with a head that feels like it's been impaled by a railway spike, and practically begging to throw up whole my mind goes into overdrive.

And afterwards, scared of feeling it's going to happen all over again.

And I'm fed up of feeling like just doing anything will set one off.

I don't know what to do. I've barely begun to live yet I suddenly feel like its all coming to an end.

[Cat00]

I have chronic migraines so have obviously have had to adjust to a reality which includes migraine pain over 50% of the time. I've typically had fairly big nervous breakdowns every few years bc trying to live a life with that amount of pain has become too much. I have fibromyalgia, terrible insomnia and social phobia, IBS and IC. After the last breakdown everything changed, during that breakdown I developed a 2 year long continuous panic attack, I lost 3 stone in 6 weeks that took me to 5,5 stone, I didn't sleep for days at a time and had to move back in with parents at the age of 33. I'm became paralyzed with fear of pain. My mental health doctors and pain doctors were all useless.

I'm much better now the only time I get really scared of migraine is going on holiday or when away generally. I did a "living with pain" course at the local buddhist centre which wasn't a buddhist course but containes principles. I didn't think it helped much at the time but recognized a year later that it had. Because acceptance is the key at the end of the day. You have adjust your outlook and view of yourself, it has to be a view that contains migraine, you can't just keep pushing it away. You have to stop trying to judge yourself and try and not imagine how others see you, otherwise you'll just keep seeing it as a weakness, which of course it is but it just doesnt help. You have to adjust your ego and your expectations, you have to be more grown up and let go of a view had of yourself developed in childhood. If you make it part of you it can't develope into this mythical beast you go to war with which ultimately exhauts and will cause more migraines anyway. The sooner you start on this journey the sooner you'll you'll feel peace.

That's what I think anyway, that's not to say when I have a clear patch all that goes out the window, until the migraines return and then I have to adjust all over again, but each time that adjustment comes quicker at least!

[Clydelle in reply to Cat00]

What wonderful advice, Cat00. That is amazing- thank you so much for sharing that with us. I think that what you described is absolutely true- acceptance is the only way forward. And a deep sense of compassion for ourselves. Somehow in welcoming all of our experiences, even the horrible ones, we find a way through them. I haven't taken the Buddhist course, but I've read some of their teachings on suffering and they ring true. So grateful for you telling us about your experience. Thank you! Clydelle

[Cat00 in reply to Clydelle]

Thank you! I've lived through all the other permutations of negative/optimistic/realistic thought processes! I've had about 4 big breakdowns, I'm 42 now and think I've finally developed a better approach. I loved what you wrote about "A deep sense of compassion for ourselves" which for me is probably the hardest part. I do think a lot of us have to mourn for the lives we might of had if it weren't for migraines and once that's been done you can start to imagine a future.

[jamiemaddocks in reply to Cat00]

The 'mythical beast'

i like it!!!

im going to beat this ghastly beast however....

excellent advice... excellent

d

[designer111]

Yes I agree with something CAT said. There's no point fighting it. Seems I've been dealt the migraine card in life and as there is no cure then I have to try and manage it the best I can (weekly and yes I dread having them, life ruiner). So I feel shit when I have one and feel so happy and euphoric when I don't that I carry on with my life and enjoy and achieve all I can. Perhaps lucky I'm a positive person.

[KatherineM_PBC]

Hi NetroPhil. I read through your post and it resonated with me. Having lived with migraine and headaches for just a short time compared to some on here, I am starting to feel very anxious that I'm not going to find a 'cure'. I have been to see 6 Consultants in various fields of medicine to ask their advice to see if my headaches could be linked to my under-active thyroid or maybe menopause but each time I draw a blank. Sometimes I sleep well, that's probably the Amitriptyline, other nights I jerk awake and have even been woken by a vertigo attack in the night. I don't really make plans, and wake up each day wondering what it has in store for me Just like you , everything I eat, or everything I do, I wonder "will that trigger an attack".

Now, I started writing this to see if I could make you feel better, maybe just knowing you are not the only one that worries may help, and each day we're still here! I've been given 2 bits of advice lately that I'm going to follow up...... 1 is meditation, there are some good apps that can help de-stress and relax, for even 10 mins a day, it's meant to help. Also I was told to try Cognitive Behavioural Therapy, apparently that too is meant to help us look at headache attacks a different way and not live in fear.

You sound young, saying you've only just started to live......also do you live on your own, it's not nice to wake at night with your worries. Do you have family you can chat it through with who can give you support, I know they can't take away the headache but having a comforting and understanding person in your life does help. Maybe you could get to the Doc or a Headache Clinic and see if they can offer you anything for the anxiety?

Take care and best wishes to you - let us know how you get on?

[NetroPhil in reply to KatherineM_PBC]

Hi Katherine, it's certainly good to know I'm not alone on here.

I'm 26 years old and I am still living with parents (though I have to admit we're not all that talkative with each other on stuff like this). I was planning on moving out sometime this year but given how much these migraines are scaring me I might have to set that aside a while. That's mainly what I meant by barely living - I'm not sure I want to go out of a night or to work somewhere a few miles away and suddenly have my hand go numb with aura.

It seems I may have come up with a little ray of possibility though. See because I draw and write in my spare time, I may have developed Carpal Tunnel Syndrome - which I mistook to be a very long postdrome effect and plan to get checked out as soon as possible. But a search on google seems to suggest that Carpal Tunnel and Migraines are related.

In the meantime I will be attempting to try out your suggestions, particularly meditation. I've heard it can be very relaxing and I know there are videos and sites out there that offer sounds to meditate too.

I can only hope I've been overreacting to the idea of having migraines, as the idea of having something that I have absolutely no control over (as obsessive as it may seem) scares the living daylights out of me.

[KatherineM_PBC]

Hi again. I tested positive for Carpel Tunnel Syndrome too - I think us migraineurs share a whole host of problems!

You don't say if you have been to the Doc or been referred to NHS Neurology - once they give a firm diagnosis of your headaches they might be easier to treat. Certainly they can give you something for the anxiety short term. Migraine aura is scary in itself but when I've suffered it, it 'only' lasts about 20 mins. I've only had 1 attack at work and was working alongside a colleague who took over and I sat quietly while the aura passed and was able to drive home before the migraine got bad. Do you take Triptans, they might help abort a migraine attack. What painkillers do you take - what seems to work best for me is 900 soluble anadin which contains aspirin, paracetamol and codeine. As it's soluble it works quickly and I have gotten control over some headaches. It's the ones that are intractable that really get me down, those that aren't touched by pain killers and go on for days. My mum is hugely sympathetic but I don't get much from my husband, I guess I've become a bit of a pain to live with!

1 final tip......if you reach out on here you will get lots of positive advice. You will also read a few comments that are scary, those who haven't found their answers and are still suffering, but stay positive that you will get on top of this. I have done LOTS of reading and have overhauled my diet. I try to have a daily routine so as not to raise my threshold for migraine, avoid alcohol etc, really at 11.15pm I shouldn't be on my iPad either! Take care and stay strong 👊

[NetroPhil in reply to KatherineM_PBC]

Carpal Tunnel, tinnitus, there's quite a list stacking up.

And I've been to the doctors but there's not much they can do cause they're not very regular. Last time I went to anywhere for this, was a Sunday to the immediate care area at the Hospital, where they gave me Paramax, which I've found only seems to confuse the aura symptoms - the numbing in particular just seems to slow down. But I will try the anadin, as I've heard Codeine is very good for migraines.

Thank you for all the advice, I will be coming back with any possible updates to my situation. ☺

[Onthemove1971]

Netropill-

I have many migraines a week, I would be thrilled with a few times a year.

I have started going to worldmigrainesummitt.com, this site has really changed how much I understand about migraines and how best to deal with them.

I know you have said you have seen 6 specialist, but have you seen a "migraine specialist", they are often Neurologist that only sees patients with migraines.

I also do everything I can to prevent them everyday and night. Things have gotten much better for me.

I have started taking FeverFew, 3x a day. I chart every time I have a migraine. I drink a lot more water and I have changed the Magnisium I take. To Magnisium Glycinate. This has really made things better.

I would also recommend that you try Yoga to help with deep breathing and exercise. There are so many options with medications and Neurotransmitters that can help.

[klr31]

Have you tried taking a good quality B complex. It's supposed to help Carpal Tunnel and may help migraines. Just a thought.

Karen