I posted on here about 8 months ago regarding my daughter who has constant headaches 24/7 at times excoriating, she had an mri and has tried lots of different meds but nothing works. She went back to the docs today to let him know that the recent meds weren't working, but all he said was he would refer her back to the neurologist, he just doesn't seem to care. I am at my wits end as I just don't know how I can help her, everyday I have to see the pain on her face and every morning she wakes hoping that today will be the day she wakes without a headache. She is only 19 and its ruining her life, she struggles on but that isn't doing her any good. I wondered if anyone had any suggestions as they would be greatly received while we wait an age for a new appointment
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frankie2010
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Has she been tested for Hughes Syndrome/APS, just to rule it out, myself and my children have this, and although a syndrome recognized for 30 years, neurologists are pretty awful at picking it up. I hope it is not that, but if it is it is treatable. MaryF
she does suffer with pins and needles and extreme fatigue we did ask the doc for something to help her sleep but he said no. I hope we don't have to wait long for the referral
Like Hughes syndrome it is a condition that neurologists or medics are particularly good at picking up on as they tend to think of it as a blood disorder ... though at least 30% of sufferers develop neuro symptoms before anything shows up by way of abnormal blood cells.
B12 deficiency can be caused by lack of B12 in the diet (eg vegans and vegetarians who avoid dairy and fish) but in most cases its caused by something going wrong in the digestive tract that stops the absorption mechanism working properly. Pernicious Anaemia (an autoimmune response is the most infamous cause but by no means the only and almost certainly not the most prevalent. Many GPs associate it with age (changes in acid levels means it gets more likely as you get older) and often won't consider it in younger patients ... and same is probably true for most neurologists, unfortunately.
To add to the complications the test that is done isn't that good - serum B12. Active B12 isn't available on the B12 and can be a bit more reliable so you might try persuading GP to get you a referal (St Thomas do it for £18 I believe). Alternatively you could just try supplementing with B12 as it isn't toxic (hydroxocobalamin - the form administered by injection in the UK is given at doses of 1mg either every 2-3 months but is used at much higher doses -5g in 15 min as treatment for cyanide poisoning). However, unless you are sure it is down to diet, then you need to supplement in a form that doesn't involve the gut - eg not tablets you swallow but, tablets that you chew so some is going in through the saliva in the mouth. I use a nasal spray. Some people use skin patches. I find that I need to use about 3mg a day to feel okay in myself which is a lot more than the treatment offered by NHS - and are a lot of people in the same boat.
It must be awful to see your daughter suffer. Make the most of the neurologist referral! Essentially, you need to refuse to leave before you have some hope of treatment. There are many things one can try, including preventative (daily) medication or Botox. Amitriptyline, propranalol, topiramate all have a,good rep (generally - everyone is an individual, though). For the 10 worst days a month, it's good to find the acute pain killers that work for her, whether it's triptans or ibuprofen. Fir me, naproxen really works. And mindfulness meditation is good for coping with chronic pain. I do hope you can switch doctors, get to the neurologist and find some relief.
I too have a similar problem and am very knowledgable and have a great headache doctor. Why don't you email me sophiegl.1971@gmail.com and maybe we can arrange to have a chat? I really think it helps to chat to others and I can let you know what I've tried and pass on his details.
I have just read your comments and wonder if you would let me know which tablets you find best to take for constant headaches. I have suffered, generally quietly all my life with headaches. As a child they were so severe I use to bang my head to try and create a pain worse than the headache, seems very stupid now. My parents took me to various specialists but back then in the late 50s they were generally at a loss to the reasons for these severe headaches. Now I juts take loads of tables, of all types, but have yet to find a good remedy. My current headache has been rolling on for 4 days, night and day. My handbag is like a travelling chemist shop. Sandie
Hi there sorry for the delay, I've tried most things, from holistic therapies, hospital stays to try and break the OTC rebound, and preventative medications. However the best for me so far has been Pregabalin. It can make you feel a little dozy and spaced out for a few days but it's also an excellent anxiety reliever which I think we all suffer with even if we're not aware of it. A x
Hi just checking has your daughter cut out all the usual triggers... chocolate cheese citrus caffeine etc and drinks plenty of water. Diet is definitely worth looking at. Is she in any birth control as that can also cause problems. Also if she is taking a migraine preventative then other otcs are a no no as they cause rebound. Nicolas Silver has a good fact sheet on the Walton centre website. I have had migraines which have often gone chronic for months at a time for nearly 10 years and despite seeing a neuro I decided to not go down the meds route. I have tried alot if things and It's taken a while but mine are much better now that I have a clean diet and a bit of acupuncture now and then. I also do a bit of yoga and mindfulness. Hope she gets some relief soon.
Is the neurologist a specialist in migraine? If not, ask for a different consultant. When I went to see my GP for a referal, I went armed with a list of migraine neurologists. I was referred to one outside of my health area. You need to do your research before you see your GP. The Migraine Trust has a list of migraine specialists.
So sorry that your daughter isn't getting the help she needs. Make sure she gets to a migraine specialist - most neurologists know very little about migraine. Apologies if I've given this advice before but.
1. Check she's not overusing painkillers - medication overuse headache is a complete nightmare and it's really easy to cause it.
2. Ask for a referral to a pain management clinic. Sometimes chronic pain is something you have to learn to manage rather than cure.
3. Headache diary - including periods as hormonal migraine is often overlooked.
4. A really big part of managing my migraines is mindfulness meditation. It takes some commitment of time but it completely worth it. amazon.co.uk/Mindfulness-He...
Headaches are incredibly complex conditions and I'm not surprised that your GP (family doctor) is at a loss knowing what to do. Neurologists can also be a "mixed bag" and you need to find one who really does take an interest in headaches. The first one I saw was totally useless. He said to me, "Yes, you suffer from migraine. I'm sure you and your GP can sort something out." In the meantime, I have been see by four others and I think I have just struck lucky locally. Do some research in your area to find out the most suitable neurologist and then insist on seeing him. As I don't know where you live, I can't attempt to be any more helpful - and even if I did know where you are, I might even then not be able to help!
thanks all for your posts. She has tried serum, amitriptyline, topimax, naproxen, propranalol, topiramate all the over the counter meds but nothing helps, shes not on the pill either We have done all the usual eliminations and cant keep a diary as the pain never goes away its there constantly 24 hours a day. It seems when we try to explain that it never goes away we are not believed, "well it must go away sometimes" but it doesn't. I just feel desperately sorry for her and it concerns me a lot about the state of her mind as she is often quite low, I have her on amitriptyline at the moment to try and keep her sane. as I have read about people doing some silly things. Obviously she hasn't taken the meds at the same time its been over a few years. It makes you feel like you are banging you head against a brick wall. I wonder of anyone has had any experience with Lycria and if it works. I don't mind if I cant just find something to dull it abit for a while just to give her a break. All you help is much appreciated
I agree with some of the others to look into a proper 6 week mindfulness training....it helps to reset your focus...not a cure, but a way of living with the trials of life
Mindfulness training is not going to help if the person has not had enough tests to ensure her heart has not been affected, eg-hole in the heart. When all the tests have been done and there is no known causes, the approach to mindfulness can begin. Complimentary methods should be approached with caution. Mindfulness-being aware of what is happening, taking notice, it all comes under the same umbrella.
I dont regard mindfulness as a therapy, more a way of looking at the world and would never recomment it as a "treatment", it just helps us cope with life in general and gives us perspective to look at the big problems without panicking. All I can say is that many aspects of my chronic pain were less intrusive after I began pracising mindfulness, as taught by a member of my local hospital mental health team.
Where is her headache? Is it in the back of the neck or forehead or does it move around? I have a chronic condition called visual snow syndrome plus chronic migraine. I have had some relief from the headaches using acupuncture and neck massage. Most of my headaches are in the back of the neck but acupuncture stimulates the natural opiates in the brain. Make sure you get the BEST acupuncturist because it is an art, and treatment varies from acupuncturist to acupuncturist... I live in the Seattle area and have an excellent acupuncturist who knows how to treat pain very well. His name is Neil Conaty. Just another suggestion: have you considered taking her to a university neurologist? My thoughts are that if she has had a normal MRI, maybe she should have a FUNCTIONAL MRI, which are only available in a research setting. People with Visual Snow syndrome have normal MRIs but the functional MRI shows a different story (mainly hyperactivity in the visual cortex). The same might be true of someone with chronic migraine since the conditions MIGHT be related.
I have Severe Daily Chronic Migraine and have had it for over 16 years. It is 24/7-365. Headaches-Migraines and their causes have both got 1,000's of different types and triggers. There are foods that will make it worse. For me it's Dark Chocolate, pure orange-squash, Jaffa-cakes and so on. Seroxat (peroxatine) 40mg a day helps me a very lot. If I miss a day I'm bad. It is a anti-depressant but it is prescribed for some migraine sufferers. Does she have neck, shoulder pain too ?
Migraine is a painful and debilitating condition which affects some ten per cent of women and around seven per cent of men. The causes of migraine are imperfectly understood but most research suggests that there may be a genetic predisposition to these severe, usually one sided, headaches which is triggered by environmental factors such as diet, the weather and, in women, the menstrual cycle. Migraine is often a lifelong condition and as yet there is no cure. People with migraine, like others with chronic conditions, can however alleviate their symptoms so that they are better able to manage their lives.
Most people suffering frequent, disabling headaches use painkillers to get them through the day. However using painkillers of any kind often results in a vicious cycle known as “rebound headache”: the migraine is made worse because the body becomes habituated to increasingly less effective painkillers and the pattern of headaches becomes intractable. Hospital clinics specialising in the treatment of migraine suggest that at least half the patients they see are suffering from medication overuse headache as well as migraine. The first step in making life easier is also the most challenging: giving up painkillers completely. Often a patient needs to be hospitalised in order to manage this but having someone to hold one's hand whilst going through the few days of cold turkey is all that's needed. The pain will go eventually whereas if you take drugs the pain will simply keep coming back.
This is why there is now worldwide interest in finding less harmful, more productive ways of managing migraine.
A great deal of work has been done on food intolerance, for example. Simply cutting out caffeine, MSG, cheese, chocolate, nitrites and red wine helps many people avoid migraine headaches altogether. Many patients are advised to keep a headache diary, logging carefully not only which painkillers they have taken each day but also what they have eaten to see if, for example, eating dairy products or wheat could be linked to their pattern of headaches. Many of us are addicted to the foods which cause us health problems and take a great deal of convincing that our favourite nibble is exacerbating a long-standing medical condition. Keeping a food and headache diary for a month is the best way of showing us links between our diet and our headaches which we might never have suspected. Nothing will be lost by cutting out wheat and dairy products for a month to see if things improve.
Another strategy which many migraineurs are finding helpful, is managing their pain through breathing, relaxation, meditation and mindfulness exercises. Headaches are complicated events: the pain is a physical fact but how our minds react to that pain is something which, with a little training, we can learn to adjust. Just as very young children can learn to defer gratification by thinking differently about a tempting marshmallow, so adults can persuade their minds to concentrate upon something other than the pain which is distressing them. We all know that any kind of pain tends to make us feel low; chronic pain is a huge psychological challenge for anyone. Developing alternative, powerful ways of thinking which divert attention from the source of our distress can make the difference between pain which is tolerable and pain which leaves us feeling desperate.
So sorry your daughter is suffering. Not all chronic headaches are neurologically based. That could explain why none of the medications have worked.
Have her GP order a heart echo, right away! My son suddenly suffered disabling headaches at 15. It took a year before a doctor checked his cardiac status. He was in severe cardiac insufficiency due to aortic distention, mitral valve prolapse, and left ventricular wall contraction abnormalities.
They were able to help his cardiac status & his disabling headaches went away. He lives a closely monitored but normal life now.
Poor girl! The problem is that migraines are not really understood. I grew up with the same pain. I was very athletic which made it worse. So debilitating. As soon as the adrenaline pumps, that's it! Almost every day. A lot of vomiting and hours in darkness. I had all the scans, tests and therapies. Accupuncture, homeopath and reiki. Each new product was tested on me. I was the perfect candidate. My migrains were severe. Some injections of imigran helped until my body got used to it. After 35yrs of trying everything, I finally found what works for me. Migril. It is one of the older remedies which have been replaced by all the triptans which don't work for me. Migril contains ergotamime. After a migril, sip tonic water for the anti nausea. It contains quinine. The big problem is that the uk producer has currently stopped production. They are looking for a new facility and this can take till 2015. In some countries you can buy them over the counter. In the UK you need a script. Cafergot is also good but not often available.
When it is an ASD (hole) of PFO (partial hole) there is the option of open heart closure or catheterization patching. Either can fix the cardiac problem & fix the related migraines...if it were the cause. It is definitely worth having an echo performed when routing migraine treatment is not effective. Particularly because if you have a cardiac issue it needs addressing & if you don't no harm is done!
Hi, I just thought I'd ask how your daughter is since you last posted in here. I suffer from severe headaches/migraines 24/7 since I suffered a head/brain injury,since I woke up in hospital 27th march 2011. The neurologist diagnosed me with post trauma headaches and migraines and gave me a signed letter to take to my doctor's for gabapentin, I took 900mg a day but have recently been taken off them. The gabapentin was helping to a certain extent, the migraines was happening less (since getting migraines 7 days a week they was down to 3 a week with the rest of the time just severe headaches) that after I tried 5 other meds (since around march 2012 when I couldn't take them anymore because they was just getting worse every day before then never took even 1 painkiller) got referred to see a neurologist back last september 2013, he told me to look up what he diagnosed me with and there is completely nothing I could find on the internet and not 1 gp knows anything about it. I'm sorry for the weird message, what I'm trying to ask is has your daughter been given the chance to try gabapentin a try and if not it could be worth asking the neurologist, when your daughter sees them, see if they help, they are mainly for epilepsy but are used for joint pain and neuropathic pain like migraines.
Hope this helps and your daughter gets some relief soon.
Frankie hi. Just to update you on my daughter . She takes 80 mg of propranolol plus one feverfew tablet and one vitamin b12 every morning plus the homeopathy and she has now been clear for nearly two weeks and is back at college. Give it all a go x
Know all about the GP etc. support. They haven't got the time. Tried the medications, they don't work for me , made it worse in the end, triptans and stronger ones, came to the conclusion that they prolong the agony and make companies a lot of money at my expense. Do a diet diary, my triggers are oranges, lemons anything sour. Citric acid and Absorbic acid but NOT Lactic acid. Also a lot of added preservatives in food can be my trigger. I now cook from scratch with honest natural ingredients without the citric ones, substitute them with Wine vinegar for the preparations of sauces etc. Find it hard to always check the labels of prepared food but it pays in the end. Also my Neurologist found out that I was kind of low on the scale of B12 (225) I was already showing not only more headaches but also neurological symptoms that affected my balance and nerve endings. I now get B12 injections every month and 'This 'with a check on my diet...Helps Me. Now when I get a day of reduced Migrain I cope with 1 Nuerofen extra 645mg and 2 Paraceatamols 500 mg at the same time, every 4 hours but no more then ever 3 times in a day! Always eat when taken the pills even if it is only a ginger biscuit, helps with the nausea. I do no longer have to go to bed and be sick for God knows how many times until an injection to stop it, was needed. I can get through the day with a slight feeling of nausea and feeling tired but I can actually get things done that I had planned for that day.
I have after many, many years of putting up and making do, find my way of taking control of my 'Achilles Heel'/ ..Migrain and have my life back for most of the time!
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