HELP

[MigraineGirl]

Hi, I'm 18 years old and a chronic migraine sufferer, I suffer from migraines nearly everyday of every month, the last 18 months I've gotten worse, i can't exercise most of the time i have problems staying conscious after climbing the stairs, I've had depression for a few years which gets worse whenever i go through my really bad migraine attacks, the last two months I've started waking up on the verge of panic attacks my emotions seemed to have been turn off because i feel numb about most things and at the age of 18 this is not how i wanted my life to be like, i'm in need of some advice from people who understand what i'm going through If anyone feels they can help please comment or message me.

[Hidden]

Go to your doctor, nobody on here can tell you what it is or why this is happening, so you need tests and medication to help you.

[MigraineGirl in reply to Hidden]

I have and they now say the same things, i have Chronic migraines and cluster headaches and i'm difficult due to the fact most medication used to treat migraines do nothing for me. To the GP's its ans open and closed book because they don't understand, neurologists just hand over a new prescription of new meds.

[Hidden in reply to MigraineGirl]

Ask to be referred to a Pain Clinic in your area. I used to suffer horrific, debilitating migraines, at least twice a week until I was referred to my local one for pain due to slipped discs in my neck and arm pain. I agreed to Occipital Nerve Block injections for that, but, they have stopped my migraine 100%, I don't even get headache any more.

[Mavary]

Hi Migraine girl. I've had migraines really bad on the odd occasion and I've had cluster headaches which can last for days. Ive recently had the flashing lights migraine which is new to me but never anything as bad as what you are having. I'm sure you will have been to the Dr to get it sorted. Maybe they can refer you to someone else or maybe get a scan done to make sure nothing else is going on. Sorry I've not been much help but I felt I ought to reply to you.

[MigraineGirl in reply to Mavary]

thank you, sorry you have to go through it to, I've recently started having this weird patch were i get red dots in my vision. Thanks for replying any help is great.

[Ursinia]

I suffered for 30 years and spent massive amounts of money on every alternate treatment, with no improvement. I now take Beta Blockers ( Propranolol) and only have about one a fortnight instead of ar least 4 a week, so a massive change. I know no longer live in dread of waking up to banging head pains.

Good luck!

[MigraineGirl in reply to Ursinia]

thankyou.That's amazing i hope it statys that way, I was put on Beta Blockers when i was 15 i suffered from really bad side effects, maybe there worth giving another try

[Hidden in reply to Ursinia]

Have you ever had an MRI to see if its nerves in your neck being trapped by discs? I only ask because I suffered for years and years, waking up with migraine, one GP told me they weren't migraine that they were cluster headaches! I was referred to a pain clinic for my neck pain (I have discs out) and agreed to Occipital Nerve Block injections...that was 2 years ago and I haven't had one migraine since! The specialist said that the nerves trapped by the discs were causing the migraines.

[MigraineGirl in reply to Hidden]

That's amazing! i had and MRI about a year&half ago which was done to out rule any tumors. I'll definitely be seeing about pain clinic my neurologist did mention if when i asked about nerve blocks but never any help. thanks for being so helpful.

[Hidden in reply to MigraineGirl]

No problem at all, it's a little uncomfortable when you have them, but well worth it. I haven't had so much as a headache since having them! Insist on it, don't take no for an answer when you ask about the pain clinic referral, it's your body!

[woodlog]

Don't give up. I do know exactly how you feel: I'm 67 and have been having migraine headaches all my life: they were particularly bad when I was your age. There are some things you can control, some which you can't. I think one gets depressed by trying to control what can't be fixed. But there's lots you can do to make the situation bearable. You may even cure yourself!

You must get a diagnosis. Not all GPs know much about migraine so do everything you can to be referred to a neurologist who specialises in migraine. That may take some time unless you are able to pay for a private appointment at Queen Square where they see thousands of people every year who will be suffering just like you. You may have to wait a year for an NHS appointment at Queen Square but there's lots you can do in the meantime to make life bearable.

You need to keep a detailed diary. Migraine is often triggered by certain things such as the weather, the monthly cycle and diet. Diet is the one thing you can control. Keep a detailed diary of what you eat and when you get an attack.

A surprisingly large number of people with migraine get better if they stop eating certain foods. Try cutting out the following things for a month: you may feel a different person! Many do.

You must cut out anything containing caffeine: according to neurologists, half of daily headaches are caused by caffeine rebound. It will be hell for two days but after that you will feel much better as long as you drink no more tea, coffee or coca cola or red bull. Obviously drink nothing alcoholic.

At the same time, try going a week or two without any dairy products: no milk, cheese or foods containing milk. Drink lots of water: at least four pints a day. Dehydration gives you headaches.

The other thing to cut out is wheat: many people are allergic to wheat even though bread is their favourite food. It was certainly my case! I couldn't imagine life without bread and biscuits. Try it for a month. Eat lots of fresh fruit (but no oranges or lemons), fresh vegetables, no junk or spicy food of any kind, lots of fresh fish, fresh chicken and fill up on potatoes. Many people find all sorts of health benefits from this change of diet in addition to getting fewer headaches.

It's about taking control. You can;t control everything but your diet is something you can fix and many people find that alone solves the problem.

Painkillers can also be a problem. If you take them often, there will be rebound headaches. Getting off painkillers is very difficult and you may need to be admitted to hospital if you can't manage it at home. One thing which helps is yoga: nothing strenuous, just deep relaxation and gentle stretching. Going for a leisurely walk in the park or the countryside is also hugely beneficial. The best treatment for depression and migraine. Use distraction techniques such as listening to an audio book when the pain is awful. Your GP may be able to prescribe imigran injections: these work brilliantly but you have to be very careful not to take too many: never more than two a week or you will get rebound headaches.

But do try the diet. You may be amazed at the results. It takes will power to stick to it but it certainly won't make you feel worse.

Good luck!

[Juliapester3 in reply to woodlog]

Hi I like your reply , I eat very healthy but do use spices a lot . ... What spices do you think should be avoided ( I thought they were supposed to be very good for you) thanks

[woodlog in reply to Juliapester3]

The only way to be sure is to keep a diary and add one new food at a time and see if there's any consequence. Many migraine sufferers are affected by chilli. MSG is in lots of Chinese food and that upsets most migraineurs. Start with a diet which has nothing dodgy and add one thing at a time very gradually to see if you can tolerate it.

[MigraineGirl in reply to woodlog]

This might sound crazy but i crave Chinese whenever i'm due a bad migraine, which happened lastnight/today, I was told once that its to do with the oils used but i'm not sure. Its the same for me with energy drinks , one of them with painkillers is one of the only ways i can get through a day, I guess its different for everyone.

PS. mayonnaise caused one of the worst migraines i've ever had.

[woodlog in reply to MigraineGirl]

Like coffee, energy drinks contain caffeine which gives you a quick lift but cause severe withdrawal symptoms ten or twelve hours later which is why people become hooked. It's a vicious circle. Chinese food with MSG is lovely tasting but many migraineurs find they get headaches next day.

[MaryF in reply to MigraineGirl]

MSG in Chinese food is a terrible trigger as is gluten for some people. I have severe migraines due to something called Hughes Syndrome, and also Lupus plus a few other conditions, my migraines are managed well, but I pay great attention to diet, and only eat fresh food, and avoid any form of additive, ie no fizzy drinks or rubbish like that. Just good fresh food, I hope you get better. Where are you located as if in the UK you could go to the National Migraine Centre. MaryF

[Hidden in reply to woodlog]

I agree with most of what you say woodlog, but everyone is different. I have a wheat intolerance, (allergy is completely different), but it doesn't cause migraine (for me). Caffeine wasn't the cause either, nor were certain other foods. Again, a dairy intolerance can, but mainly cheese in my case and if I ate pure chocolate, but I was highly allergic, and I mean anaphylactic shock, swollen lips, eyes and hives everywhere! In my case it was nerves trapped in my neck from slipped discs, sometimes it's a physical cause.

[woodlog in reply to Hidden]

The only way to be sure is to keep a diary and add one new food at a time and see if there's any consequence. Many migraine sufferers are affected by chilli. MSG is in lots of Chinese food and that upsets most migraineurs. Start with a diet which has nothing dodgy and add one thing at a time very gradually to see if you can tolerate it.

[MigraineGirl in reply to woodlog]

Thank you so much! i definitely will take into account everything u said, i've had no life for the last year and i'm open to try anything just to have some normality.

[lcb10 in reply to woodlog]

That's a lot of recommendations which woodlog has made, and they may well be very helpful.

Unfortunately, many people with migraine, especially chronic migraine, need a kind of great sympathy to themselves, and cannot be anything like as strict with diet and so on. They may have been able before the migraine came along, but after that, it can become just about impossible.

Everyone is different. Migrainegirl's reply says that she craves Chinese Food for example.

Some peoples' migraines and how they are psychologically (which they may not be able to control at all with such pain or sickness or both), or neurologically (or anyway in some physical way with deficiency or disease or something else) mean they will have to give in to cravings. The migraine disturbance means it might be unavoidable when suffering most, or if the suffering isn't as intense but goes on for a long time.

Therefore - don't feel too bad if you find you are in a position where, if you wanted to try, you cannot do all, some or even any of the recommendations which many people make from time to time.

It's OK. You're suffering a great deal.

Breathing very heavily - just breathing - for hours on end got me through some of the worst migraines I've ever had. Hundreds and hundreds of them. But I never, ever thought I'd get through them at the time. Nothing seemed more impossible. There is a way, not to forget everything else, but to force yourself to breathe therapeutically, continuously anyway - as if you are going to drown in half a minute unless you do. It felt very like that anyway - so I was able to keep going each new breath, forcing myself, a whole, new, deep, therapeutic, full breath, relaxing, drinking in swimming pools full of air in one breath, falling to let it out. Each time.

I hope you get some good medical connections - GP or specialist. It can help, but also don't think that you're bound to get help with migraine. You might get referred to 3 specialists within a single season and have an experienced, great, sympathetic, positive, active GP. But the migraines may not improve one jot. That's what I went through for years (though I didn't get the help, mostly, back then) but at least the first GP I saw was brutally honest and told me it's unlikely that there was much at all to be done to help. (This was around 14 years ago, things may have progessed signficantly with migraine, though - but at the same time, it's not understood still, and you may or may not be helped in your actual suffering itself.)

[arjuna]

heyy im 17yrs old and I have had migraines every single day for the last 2yrs and a bit. Like you, I've been on and off medication as nothing seems to work. The GP and neurologist have said they can do nothing but give me meds and give advice on a healthy lifestyle. At the age of 17, I was doing a lot of dancing about 6-7 hours a day and because of these migraines I had to stop because, like you, I can barely do any exercise; i feel dizzy and unstable after a flight of stairs! I have never experienced depression but there have been months were I've just shut myself away from everyone and barely went outside to see people. People who have never had migraines dont understand the effect they have on a person. To me, its not just severe headaches, theres abdominal pain, ear aches, chest pains and just a general feeling of weakness because you feel like you have no control over your own body, so much so that I've stopped doing the things I once used to love the most. I completely understand how you feel and i think over the years, Ive started to think differently which I find helps quite a bit. I cannot say I've been through what you are cause i've never experienced depression and I know exactly how annoying it is when people try and tell you that they know how you feel blah blah blah.

What I can say is, don't let these migraines stop you from doing things you want to do, even if you tell yourself that you don't want to (due to the emotional affect of having migraines), stop and just think about what you want to achieve in life. I know it sounds cheesy coming from a 17yr old but honestly, migraines have made me feel so bad at times, to the point where I just gave up with trying to get better. I accepted that I'm just gonna have to carry on taking tablets and puttinig up with the pain but thats wrong. It's your body and you deserve to live life, especially at such a young age, you've got your whole life ahead of you, don't waste it thinking you have no control. When I look back at the last few years, I haven't done anything, made any memories cause I wasted it.

Now I'm not saying that you need to wake up tomorrow and take ultimate control, but take baby steps. If you feel like the medication you get from the doctors are not helping, why don't you stop taking them all together? The medication they give you aims to treat the symptoms by reducing the pain but not to solve the actual problem. So if they don't work, dont just take them cause if you take a lot like I used it, it will probably lead to some sort of liver failure in the future. Yes, this does mean the pain is still gonna be there but the meds were doing you no good anyways! After this, make sure youre eating healthy and drinking plenty of water but not too much as it can affect the electrocytes (yes I went a bit over board with the water and it doesn't help the headaches at all!!!). In terms of exercise, start little by little, maybe after school, get off the bus a stop early and walk home or take a walk after dinner just for 5 mins and slowly increase the amount over time. It will be uncomfortable and maybe even hurt to begin with but exercise is so important! Gradually, the pain of even moving will start ot decrease and you'll come to the stage when you actually consider going to the gym, I know it sounds crazy! But trust me, it's all about gradually changing your lifestyle.

Try drinking green tea, make sure it decaf. If you can't stand the taste of it (though it does grow on you ), swap tea or coffee for just hot water. MAKE SURE YOU CUT OUT ALL CAFFEINE FROM YOUR DIET!! Yes, even those redbulls you need to keep you awake for exams!

Also, what I found really helped me to get out of the mind set that I have no control, is to make a goal or a list of things you want to do just to motivate you. For example, a year ago, I decided that I want start a clothing line. I still havent started it, but slowly, I've started to work on it and it really has kept me motivated. I don't know if any of this is actually gonna help but I wish someone had told me this early so that I hadn't let two years just pass with no meaning. You may not know the cause of to migraines but by changing the way you think may in fact solve it or at least decrease the pain naturally! I really do hope this helped, if you need anything, just message me because I feel like you have a similar experience and it's always comforting to know other people understand how you feel. Good luck with everything and I really do hope this help.

I just want to make it clear, this may not stop the migraines (well it hasnt for me) but it really has made everyday that little bit more bearable!

Woah thats a lot of writing, sorry :')

[Hidden in reply to arjuna]

Ask to be tested for Lupus and Coeliac Disease, all of your symptoms are indicators of both those problems.

[MaryF in reply to Hidden]

I have gluten intolerance, Lupus and also Hughes Syndrome, a cousin of Lupus which causes awful migraines unless your blood is made less sticky! MaryF

[Hidden in reply to MaryF]

My eldest daughter has all of those too Mary and doesn't get a single migraine, she has however miscarried five babies! Yet my youngest daughter has been brushed off by three GPs who won't even refer her for diagnosis, because her bloods showed lack of Vitamin D and low iron (not anaemic), both of which indicate coeliac!

[MaryF in reply to Hidden]

Are you aware of this: hughes-syndrome.org/ Patient forum on here, health unlocked, which I administrate. Also list of specialists carried on the site also, both private and NHS. It is so important that they both have a recommended specialist! MaryF

[MaryF in reply to MaryF]

And of course still stay on this forum, many of our members are on both as the information on the two is great. MaryF

[Hidden in reply to MaryF]

No I wasn't but I'll pass it on to Lisa and have a look for my other daughter, thank you.

Lisa already has a specialist and we're going with her to her next appointment. At her first one, she was asked if anyone else in the family suffered problems like hers and she told them yes, me and her sister. The specialist asked for us to be referred to have tests done, but our GP refused, saying that she couldn't just refer us, we had to go through the proper channels first! That was 2 years ago. It took 18 years for Lisa to get answers, Laura has been suffering since she was 4 and she's 28 now! It's ridiculous. I'm writing a letter to the practise manager complaining about the non-treatment of Laura, poor love has no life.

[MaryF in reply to Hidden]

I do understand, both my children have Hughes and one of them Lupus also, I have 6 conditions in total. I sent you the list of recommended specialists above and on that same site is the list of recommended blood tests, but always take forms to hospital as the samples are a bit time sensitive. All the best to you. MaryF

[MigraineGirl in reply to arjuna]

Thank you so much! its a huge relief to have someone my age to talk to! you made me emotional!! it was almost like i wrote this, i actually stopped swimming and dancing because of the way my life's changed. I actually started drinking green tea last week, Ill definitely listen to what you said, Thank you! I hope things work out for you!!

[arjuna in reply to MigraineGirl]

I felt exactly the same, i've never met anyone my age with practically all the same problems! With the green tea, dont go overboard, I used to drink like 4 cups a day cause it helped to calm me down but it does stain your teeth, thats why i stopped. If you need anything, be sure to message me! :).....tbh I don't know if you can message people on here, I'm new :') hope everything changes for you, you can only move forward from here

[Gambit62]

has anyone checked your B12 and folate levels?

Here's a link to a check list of symptoms of B12 deficiency - covers a lot of ground and may or may not be relevant. If it does seem relevant then I'm afraid it can be an uphill battle getting GPs to listen - there is a forum run by PAS on HealthUnlocked where you will get lots of support if it does seem like a possibility - including help with interpreting test results as the standard test isn't that good a guide but again, GPs aren't aware of that.

pernicious-anaemia-society....

[skullsandponies]

I'm so sorry to hear you are having such a rough time. I completely empathise. I've suffered with migraines for 10 years, chronic for about 4. The good news is that I'm now episodic and only having around 10 pain days a month - maybe 6 of those are migraines. Most of which are treatable. I'm still working on getting this number down but it's much more manageable.

This forum was set up by the National Migraine Centre who are based in London. Where are you based? You can just phone up and make an appointment with them. They are a charity but employ too headache specialist doctors who are amazing and deal with people like you and me every day. It's not free - they ask for a suggested donation of around £200 which might seem like a lot because we are so lucky and used to having free healthcare but in comparison to how much migraine takes over your life - it really is nothing. If you are really financially struggling and there is no way you could pay £200 then talk to them - they won't turn any one away and will take whatever you can afford. They made such a difference to my life. GPs unfortunately, only have 4 hours training in total on migraine so you probably no more than them!

For example you mentioned going on beta blockers which had bad side effects - however there are many different types of beta blocker so you could always try a different one which will be completely different. Another thing is people with migraine tend to be very sensitive to medication so start avoid preventative treatments as the side effects are so bad. The NMC taught me that by going on and off meds very slowly in much smaller doses can help with this tremendously.

Don't give up hope. You will get there!

[TaraBella]

I am sorry that you are having so many problems! One thing that stands out to me as unusual for migraines are your symptoms other than headaches. Lightheadedness after climbing stairs is a symptom of orthostatic hypotension. Look up Paroxysmal Orthostatic Tachycardia Syndrome (POTS) and see if some of this applies to you. Young women tend to get this. Headaches can be a symptom of poor blood flow to the brain, which can happen from low blood pressure. It would be managed differently than migraines by your neurologist, although it sounds like you may need to see a different neurologist who is able to diagnose and treat you properly, whatever the cause of your headaches. I have both migraines and POTS. My POTS is caused by autoimmune neuropathy, but there are other causes. BTW, my migraine triggers are: nuts, eggs, dairy, wheat, caffeine, alcohol, chocolate, and too much salt in the diet. Birth control pills also triggered bad daily migraines. Staying well hydrated helps me a lot.

dinet.org/index.php/informa...

Good luck! Hopefully you can find a new neurologist. It isn't uncommon for doctors to blame the patient as anxious or "shut the book" when they don't recognize a disease processs...you have to try and find a specialist who does.

[Dollychris]

Hello,

Having suffered chronic migraine since the birth of my first child at the age of 20 (I have just turned 60) I sympathise greatly with you. I have been diagnosed as suffering Hemiplegic Migraine which can mimic stroke like symptoms. I have tried most medications with differing results but Beta Blockers were handed out by a GP and caused me many problems so would advise anyone taking new medication to ask your GP to explain about new meds and read up on them yourself too.

Anyway last year the migraines became unbearable, especially as cluster headaches became a problem and my GP put me on a low dose of Topiramate which has really helped. I'm not a person who will take any medication that is not necessary but this really has helped a lot so thought I would pass on. Hope you are feeling a little better and wish you well.