Frustration about understanding Migraine - National Migraine...

National Migraine Centre
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Frustration about understanding Migraine


Migraine is a real illness.

It has plagued me since the age of 17-18 and has terrorised my life. I am 28 now, married at 25. No children.

It is a debilitating illness and should be classed as a genuine disability. You can't do anything when you have a migraine.

Yesterday I had a thunderclap migraine. These are rare, and I started getting them the other year. They can be nasty and make me violently sick.

I find it difficult to hold down a full time, permanent job because no employer exists that will knowingly hire someone who suffers from migraine. Then they don't understand when you need time off because you're such an inconvenience to them. Doesn't seem to matter how hard you work, or what you have to offer the company - all gets blown out the water when you have one day off for a migraine. They just don't understand. I'll never have a positive reference because I always end up having to take time off.

Also, how many times have you heard someone say it's 'just' a bad headache? Makes me wish they suffered instead of me, so I could ask them how it made them feel. I've suffered with them for ten years, can't eat and drink whatever I want, can't do anything strenuous. I just can't have a full, proper life like other people my age.

It makes me so frustrated. I seem to get them whenever they come and find me - I've tried all kinds of preventives and triptans but nothing worked - it either made no difference, gave me terrible side effects or exacerbated the migraine. Now I have developed all these other conditions and I just can't seem to cope with how my life is. It's very upsetting.

On one occasion I had a cluster migraine last for around 11 days. Migraine costs a lot of money in time off work. I've now developed CFS, Anaemia and IBS to boot, meaning more time off.

I just can't control my body. I feel trapped and depressed.

I can't be the only one to feel like this, but I honestly feel that way at times.

As always - Why Me?

12 Replies

I feel for you I really do. I also have on and off since the age of 14 with migraine but nothing compared to the suffering I am experiencing now. I have been diagnosed with ( coat hanger) migrain, excruciating pain across the shoulders neck and head. The neurologist told me to give up tea, coffee and fizzy drinks and I have started to drink coconut water. Now i don't know whether it's the lack of caffeine or the coconut water but I am getting a few days with less pain. Not holding my breath yet but can see a ray of light at the end of the tunnel. They it drink a couple a day and let me know how you get on xxxx

in reply to babs1234

I tried coconut water once and it gave me horrendous upset stomach. I tried Aloe too - same thing :(

in reply to CJA2012

That's a shame I'm drinking 4 small cartons a day problem is I don't know whether it's that, that's helped or the giving up caffeine

No it's not just YOU. I am in my sixties and suffered throughout my life, with periods of less frequent and severity. Like I have said in previous postings, migraine is a disability and has many variations. Most people with disabilities will find that the workplace can be ruthless when you are a ' sufferer'. It is like it is... They can't rely on your being on your post when they require you to be there and that is fair enough in my eyes. Life isn't fair ,it is hard! You have to accept you are disabled to a certain extend, don't start feeling sorry for yourself( is extremely hard not to do!) but at least you know your boundaries and then start to manage your life within those boundaries first, it will make you stronger mentally and you find you start to do more then you think you could. Perhaps you might even, like in my case, after a lot of determination and regularity, manage quite well. Migraine 'suffers' should become migraine managers. You need structure in your life, so start with a diary for food and drink ( natural with no additives, cook from scratch ( always check the labels, this will all become second nature after awhile) even natural foods and drinks can be triggers, mine are everything citric, lemons, oranges, gooseberries and citric acid as additive/ preservative in food. Also watch the weather forecasts, learn to level your emotions, learn to de-stress( get yourself an App) or take up Yoga/Alexander technique. A walk outside in the fresh air is beneficial even if it is the last thing you want to do. Also regulate your bedtimes, not too short and definitely not too long either. Even when you do suffer badly, try to get up, keep the curtains closed and sunglasses on when you venture outside. And whatever you do, don't starve yourself after chucking-up, nibble dry cracker bits and sip water/ weak tea(without milk. If I have been sick, I sometimes try to sip coca cola( the genuine one) can't stand the stuff normally as it can be a trigger if you drink it regularly. This does stop you being sick. I keep a bottle/small tin in the fridge for this purpose. So again, manage your life, find your triggers and stick to your new regime. If you don' only make your life more difficult to live with.

Most important see your GP and get referred to a neurologist, have your blood checked, if for instance your B12 level is under 350 it can cause neurological symptoms. I get monthly injections for this. Folic acid levels need to be checked if low this can also cause anaemia.

Enjoy the 'good' days/hours, store the feeling this gives you and draw on it when you feel low. Tell yourself off when you feel sorry for yourself and pat yourself on your back for managing so well.

in reply to ACritical

Yes, I would second the need to get your B12 levels and folate (B9) checked given your range of symptoms.

A list of symptoms can be found here


I'd actually suggest that anything under 450 would require further investigation - possibilities are looking at MMA and homocysteine - harmful waste products that build up if you don't have enough B12 and B9.

There is a PAS forum on health unlocked and you might find it useful to join that - particularly in terms of getting support in interpretation of test results and dealing with GPs who often know very little about B12 deficiency, or have a knowledge that is clouded with a large number of myths about what it is (many seem to think it is a form of anaemia whereas that is just one of the many possible symptoms.

in reply to ACritical

I have already been diagnosed with IBS and Anaemia too, attributable to Chronic Migraine and long-term side effects from medicationI have been on. I have plain biscuits in the cupboard and bottles of water stored away when I need it. I am going for repeat blood tests in the next couple of weeks as I am low on B12, Folates, Creatinine and Iron. My migraines are difficult to manager as I suffer from thunderclap migraines also - so you'll never know when they may occur. I've been seeing a Neurologist for ten years and they have agreed I can try the Botox injections, although they are generally stumped and don't know what to do. I have a very good diet and often make things from fresh ingredients - always make sure I have greens, carbs and proteins. The Dietician thinks I'm doing a good job and the Gastric team said more or less the same, apart from having IBS.

Hi I do feel for you but please don't think your alone. There are support groups around. If you can look on Facebook as there are groups on there which are a great help, or they are to me anyway.

I have Hemiplegic Migraine meaning one side of my body gets paralysis when I get attacks and it happens daily 9 times yesterday alone!

You can imagine how hard it is trying to work like that. I've been off sick now since last June.

Not trying to make yourself seem any less but just letting you know there are many more of us out here.

I wish you all the best.

in reply to h66black

Seems there are so many types of migraine it becomes a minefield of symptoms! Where to begin. My migraines do end up in seizures which they never used to. They've just got progressively worse over the ten years I have suffered with them. Just wonder how I might ever cope as a mother.

I feel for you, too, CJA2012, and don't know how I would've coped if I'd been as badly off as you are now when I was your age (my son is older than you!). If you can find a support group, that is the best advice any of us can give you. Docs are totally flummoxed by Migraines. They get all focused on doing the best for the patient and the brain is so amazingly complicated! They must make sure you're not about to Stroke Out or something.

Some of the replies here . . . um . . . you mean well but the condescending attitude wouldn't help me if I were in as much pain as CJA. Everything anyone says about stress is very important! At 64 I'm finding a host of ailments including Migraines, exacerbated by stress. It seems like all my meds (arthritis, high BP, stenosis) ultimately can't work long-term (the way vitamin supplements can! :), and just interfere with each others' mechanisms.

It takes a long time to get to where you can manage your particular situation (again, the most conscientious of your docs is frustrated at trying to alleviate your pain because it's the most intractable Migraine feature). All I can say with any authority is Give Yourself Credit for Your Good Days! It's all your excellent coping . . . and get a nap if you can!

Thank you for your support, it means a lot to me. The thing with my symptoms is that as my work history is unstable (as a result of being off sick so much) is that my husband and I will never have our own home and we don't have any savings - we keep having to live off it every time I'm ill. Also, I might never be a mother because I will never be able to cope without the medication for pain - not to mention the medication for chronic IBS. It is utterly heartbreaking.

I suffered years of migraine , tried everything too .

I was eventually incredibly helped by taking the anti epilepsy drug Gabapentin . It stopped my migraine overnight . Just amazing result after having 2-3 a week . I'm putting it out there as My GP didn't suggest it but a doctor friend .

It is off licence for Generalised Anxiety disorder and I think that a low lying anxiety was probably the root cause . I only take it at night now and very few migraine .

good luck all


in reply to Monty123

I have tried anti-epileptics before but they didn't really work for me as they exacerbated other symptoms. I tend to have Diazepam for anxiety.

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