Newbie - struggling a little...

[bethyboo]

I am so glad I happened across this site; overwhelmed by the wealth of experience and knowledge (not to mention support) that you all give up your time to offer. Please know that sharing in this way touches so many people's lives - so many individuals who face such distress caused by migraine. I don't really know anyone who suffers from migraine, I have wished for someone that might have some understanding, rather than a pat on the back and a 'hope your headache gets better' - I feel I have found that connection here.

I have never written a blog before, so here goes! I'd never experienced a migraine until 5 years ago, after I had meningitis. Sadly, I have now lost count how many I have each month. I ended up in hospital on Thursday -triptan doing nothing, ambulance guys thought it was a stroke (happened several times before). Now awaiting an MRI and another discussion about medication.

The migraines are unbearable at times and heart truly goes out to each and every sufferer. I wonder if anyone can help me? For those of you who have children, how do you help them to cope? As the ambulance staff took me out of the house, I could hear my boys crying but couldn't even speak to comfort them. The migraine affects those I care about and this distresses me so much. I have spent the last week of the school holiday asleep, my boys are understanding but I feel upset that migraines are stealing away precious time from them.

Oops, didn't mean to waffle on! Thank you for taking time to read this.

[Paulacg]

Sorry to hear about how much your headaches are affecting your life. My advice would be to get the MRI done, but if they don't come up with answers, make sure you see a migraine specialist like the national migraine centre rather than a general neurologist. And always make sure that whoever you see is aware that they started after the meningitis.

Also it really helps to become a bit of a headache expert yourself so read the NICE guideline and BASH guidelines for treatment.

nice.org.uk/nicemedia/live/...

nationalmigrainecentre.org....

[katya2]

Hi bethyboo, Sorry to hear your migraines are so bad. Do keep searching for an answer. I hope you find one soon., Are you taking anything to reduce their frequency?:If not the NICE guidelines would give you and your doctor some ideas. You don't say how old your boys are? My two boys grew up with my migraines and I know how frustrating it is when you want to do things with them and you can't. But, my boys, who are adult now, tell me that they didn't want to be always doing things with me. They very much appreciated the things we did do together but they also appreciated having time to themselves. They knew I would get over my migraines and they quite enjoyed the freedom that came from me being in the house in bed (which felt safe) but not able to interfere which gave them some much needed freedom in a safe setting. They knew they could not invite other people round or play riotous games when I had a migraine. We learnt to keep simple meals in the freezer so that If I was well enough I could get up put them in the oven and go back to bed and if I was too ill they could do the cooking and they learnt that they could perfectly easily get themselves to bed at the usual time without having to be supervised. Routine is invaluable and it is important to have help from family and friends - perhaps somebody who could come over before you call the ambulance but it is also important to recognise that you don't need help all the time. Under guidance children can do a lot more for themselves than we think they can. But if your migraines are so frequent that they are turning into your carers then you need to speak to their school or nursery and perhaps get help from some of the support organisations for young carers which exist nowadays. youngcarers.net (patt of the Princess Royal Charity) or nhs.uk/CarersDirect/young/P... (run by the NHS). I hope you find a way through this. Best wishes to you and your family.

[frazzled]

I think giving preventative medications a fair trial is really important, as well as increasing doses to a maximum before writing them off. Also, remember side effects often wear off or are more bearable than the migraines.

I have had chronic migraine for sixteen years and have recently got my life back on track using amitriptyline and topiramate. It has been hard bringing up children while suffering from migraine, but kids are adaptable and learn quickly when they need to be quiet and more self sufficient.

You will get through this difficult patch. Put your health first, find a doctor who is sympathetic to your condition and make a plan. Aim to make your condition more manageable.

[Roscoe123]

Hi bethyboo, I too share your pain. I have been a migraine sufferer 17 years (am 37 years old). I too have tried various medications, had an MRI scan in 2000 and a lumbar puncture but nothing was found. Which was a relief but deep down you want them to find something just to give you an answer. I now have 2 boys 8 and 5 and all they have ever known is mummy has a migraine. Had migraines on both days that my boys were christened so really didn't enjoy their special days. It had taken over my life and I feel that I have missed out on quite a few days out with my hubby and children thanks to a dreaded migraine. Must have been horrible to see your kids crying when you was taken in an ambulance. I have had a few trips to A&E before and most of the time as soon as you say you are a migraine sufferer they don't seem to care (well that's how it feels anyway). On a couple of occassions they have thought that I had had a stroke but everything was ok.

I am at work today with a migraine and am only in as otherise I will trigger the sickness policy so appologies if my typing is bad or doesn't make sense/. My migraines feel like my brain is far too big for my skull and that my skull is squashing my brain. Have been to see a few doctors and to this day I don't feel that I have spoken to one doctor that understands the pain I am going through. I have a headache most days with a migraine 2-3 times a week, I cannot even remember what it feels like not to have a headache.

Last year I went cold turkey and stopped taking painkillers as my doctor thought that I may have medication overuse. My headaches/migraines did seem to get better but lately they are back with avengence!

At the moment I am taking 20mg of amitriptyline but this makes me feel so tired but it seems to let me have better sleep.

Hope you get yours under control soon. Take care

[teadrinker]

I am a mum too, with chronic pain & migraine. My youngest was 2 when my problems really took a hold. They are now 12 & 9 and therefore OK to leave in front of the TV if I have no choice but to go to bed until their dad gets in. When they were younger I just used to sit them in front of CBeebies and lie next to them, and they've turned out OK! I have explained to them what happens with a migraine in simple terms, and it doesn't seem to be a big deal for them. It does mean that I have not been as spontaneous as some other mums about having friends round for tea, but it's not the end of the world. You need to get your rest so that you can recover and you'll make it up to them later.

My kids witnessed their dad being taking off in an ambulance due to acute illness a few years ago. They used to worry every time one of us had a medical appointment in case we got "kept in" so we had a chat about it and now they don't bat an eyelid.

I would just give them some reassurrance so that they know that grown ups can get poorly sometimes but keep it matter of fact & calm. If you have an attack and it's just you in the house with them, even a small child can fetch the phone so you can call for help (and teddies to "make you feel better"). As they've got older we have developed some rules so that if I'm in bed I know they will be safe eg cold drinks are OK but no hot drinks. The eldest recently offered to fetch the younger from school becuase she could see I wasn't well.

I also have a small supply of food in the freezer and try to keep on top of the school uniform so that the essentials get done & the unimportant stuff doesn't matter.

All families are different and some have parents with migraines. As the daughter of 2 migraine-suffering parents, including a mum who had a couple of hospital admissions when I was at primary school, I don't feel it's caused me any problems in later life.

Be kind to yourself.

[nevergiveup]

I also have two boys who have grown up with their mum spending 3 days in bed with migraine every second week up until about 5 years ago when I was given triptan from my doctor which works well in that it stops the pain and nausea after about 1 hour. However I then found the frequency became weekly and after trying chiropractors, acupuncturist, different preventative medication from the doctors I have finally found something that is helping. Migraine support formula, I came across on the website when I was googling feverfew, it contains a lot of natural herbs, vitamins that have been researched and known to reduce migraine frequency. I have been on them for 4 months now and had no side affects and have recently gone for 4 weeks without a migraine which is a miracle for me! I will continue with MSF as I can honestly say this is the best I've felt in 20 years! Just wish I'd found it 20 years ago as like many of you, I have missed out on so many precious family events and moments!