Hi, I'm really hoping someone can help, I'm a chronic migraine sufferer and I feel like I'm at a dead end. Apologies in advance for the long message!
I've been having migraines for the last ten years, over the past five years my migraine episodes have increased in intensity and frequency. I keep a migraine diary so I know I have 5-6 days a week where I suffer from migraine. I have also started to suffer with hemiplegic migraine occasionally.
A neurologist, that I saw at one of my trips to hospital 4 years ago, put in place a plan for me to try three preventative medications and finally try botox. I have tried 3 previous preventative medication amitriptyline (made me very depressed) propranolol (didn't notice a change) and topiramate (made me very confused and forgot basic things like my address - would not recommend this medication!!). At this point I assumed I would be trying an alternative medical procedure to try to calm my migraine like botox. I was informed I wasn't taking a high enough dosage of each medication, so I was back to square one and have been told I must start the process again (I'm incredibly sad that I wasted 3 years of my life trying medications that weren't helping and lived with various side effects).
I'm now on nortriptyline, I've been on this for over 6 months and today my dosage has been increased to 70mg as it was worked to start with then stopped after around 2 months. I take sumatriptan when my attack is unbearable and Naproxen when the attack has lasted for over three days. For the smaller attacks I take paracetamol, ibuprofen and aspirin. My GP has advised me to not take pain relief so often and I'm aware that it can cause overuse headaches but I'm not sure what else I can do. I have tried cold/hot compresses and other non medical reliefs but the pain relief tablets are the most effective way of dealing with my migraine - if anyone has any suggestions please please let me know!
While all of this has been going on I have had numerous MRI and CT scans, these came back showing a Pineal Cyst in May 2022 - I had a scan three months after the diagnosis and it had remained the same size so it is assumed it is benign. Blood tests also showed I have Factor V Liden, a blood clotting disorder that runs in my family. I've been told non of these are related to my migraine by my GP but if my blood is struggling to get through my brain or the cyst is pushing on a nerve, it must be worth looking into, has anyone had any similar experiences?
Each time I speak with my GP it feels as though she doesn't listen to my concerns and often brushes them off. The appointments feel as though we go around in circles and I feel like she just wants to get rid of me, as if my migraine isn't important. Maybe this is because she is a GP and I need to be speaking with a specialist, but I haven't seen a neurologist in over 4 years despite being referred to see one twice in the past two years! I'm not sure why these referrals have never materialized any results, my GP only tells me I need to keep trying the three preventative medications (for the second time).
My GP never asks what symptoms I have, there is never a plan of action and if there is it seems to have been forgotten about by the time I make a new appointment. On her recommendations I have completely changed my lifestyle, I sleep and wake up at same time everyday, I've cut out caffeine, alcohol, chocolate, cheese, processed foods and plenty more things I love. I go swimming 2-3 times a week and regularly walk, I've limited my screen time and I meditate to relieve stress. None of this is normal for a 23 year old and I miss out on so much that most young people take for granted.
It's not only my GP that doesn't take me seriously but nurses and doctors that I've met in hospital also brush me off and don't listen to my concerns. The only medical professional that has ever taken me seriously is the neurologist I met at a hospital stay 4 years ago when I was diagnosed with hemiplegic migraine. Is there something I could be doing wrong?
I'm at a dead end and I don't know where I go from here, I can't afford private medical care so my choices are very limited. If anyone has been through something similar please will you share your experience with me and let me know how you overcome dealing with medical professionals that brush you off and don't take you seriously? And also let me know if there's something I'm doing wrong and if there's anything more I can be doing to ease my migraine?
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So sorry you have suffered like this. I highly recommend you start magnesium asap. You can start at 1 or 2 doses and increase to 3 if you can tolerate them. It might take up to 3 months but better now so you can stop the suffering. There are a number of studies that show we who suffer from migraines are deficient in magnesium. Type of magnisium is important, if you do not notice a change in 1 month change the type ( citrate vs Glycinate vs other). I take 400mg 3x daily and I notice any time I skip a dose I sufferBut as my son's ped. Neurological just said to us it's like building a house and the medications are the roof. Food intake is a major contributing factor. I never skip a meal and I always include protein. Water in take, try for for 64 Oz of non caffeine daily ( smooties, juice, etc).
Another is sleep.. if you are not getting enough and good quality that can be a contributing factor.
If you have not listened to the "Heads Up" Podcast I recommend you doing so. I have really learned a lot from the 2 UK migraine specialist who present a number of topics.
One last suggestion... injectable Imitrix has been a life saver for me. I do not wait to treat and pain in my head. I start my steps of treatment. I use the injection ( like an epi-pen) if I can not stop the pain.
This is so helpful, thank you! I will definitely give magnesium a try and I'll look into injectable imitrix. And thank you for the podcast suggestion, I love listening to podcasts ☺️
You can also self refer yourself to the National Migraine Centre who sponsor this forum.
It does sound as if your GP isn't aware of some of the newer treatments available for migraine.
The life-style changes your GP has mentioned are ones that are commonly adopted to prevent migraine and frequently help - the podcasts do include patients sharing their experiences of the social impact of adopting these so you definitely aren't alone in finding that side of things frustrating.
I'm a lot older than you so have lived with migraine for a very long time. The worst symptom for me is the nausea and gut spasms that can occur with migraines but they have definitely improved post menopause and become much rare. Symptoms were also worse when I was B12 deficient but I found out about the deficiency by accident and it was never associated by any medics with the migraines and obviously wasn't the underlying cause.
I think you would probably find a self-referral (think they do on-line appointments now so wouldn't mean travelling) gave you some more options.
Having painkillers on more than 8 days a month is a problem, many GPs and Neurologists won't treat someone until that number comes down, as you correctly say painkillers cause Medication Overuse Headache. That's where I would start. I have Chronic Migraines and Hemicrania Continua so pain daily. I also have 4 other chronic pain conditions so I know how hard it is to not have paintelief but it is important you address that.Magnesium didn't help me and my neurologist thinks the data is out of date and inconclusive but there are other neurologists who disagree so I tried it anyway, but as I say it didn't help. I was also advised to take a large dose of vit.B2, 400 micrograms daily, but I couldn't tolerate it sadly.
I've had chronic migraines for over 20 years and episodic for 40 years and I've never been given a brain scan. My general experience is if you have migraine or migraine running in the family they tend to not look any deeper, so the fact you've had a scan at all is encouraging. My friend has a missing pineal gland, they know its in her head somewhere but they can't find it, so they haven't done anything further with her about that either.
I had to go through the same thing as you and had to go back on a lot of things at higher doses, all in all I've had about 15 different meds for migraines, it's a slow process. Where I live the GP won't send you to a neurologist if you're not down to 8 days a month of painkiller bc the neurologist just refuse the referral. If you are having migraines that often you should be under the care of a neurologist bc in most places that's the only way you'll get access to Botox and CGRP antibody treatments.
Food triggers are an odd one because they have mostly been disproved of as being triggers for migraine. So personally I wouldn't bother avoiding them, only alcohol I would stay clear of, although i can get away with one G&T occasionally. Coffee helps my migraines, but not more than 3 cups a day. Cheese and chocolate are myths really. Your migraine can begin 2 days before any pain starts, this is called the Prodome Phase of migraine, in this phase you can crave carbohydrates, sweet and fatty things. So because people ate them before the pain started they assumed they were triggers when in truth the migraine had already started. If you want to search for food triggers you need to look at 3 days before the pain starts.
If you are having that many migraines it is unlikely you're being triggered by food, unless you are allergic to gluten, there is good data on that. It's more likely your brain has got into a hyperexcitable state in which case doing anything that can bring your stress levels down is where you need to focus your efforts.
I just wanted to point out that actually, food can be a trigger for migraine - I used to eat cheese daily, then changed my diet to vegan for a different health reason and stopped dairy altogether. I had been having 3 or 4 aura migraines a day which were pretty disabling, and they disappeared. When I realised they'd stopped, it took me a while to make the connection; when I did I tested over a period of time by reintroducing various forms of dairy separately and realised cheese was the culprit. I ate it three days days running, and on the fourth day, I had an aura migraine. Iam no longer vegan and I occasionally might have a little grated cheddar on something or other, but rarely, and I get away with that, but should I eat it more often, then I will get an aura migraine.
Apparently Migraine with Aura have been linked to dietary triggers but the not Migraine without Aura. You might find this article interesting, it looks at whether different populations of people avoid certain foods or not by looking for patterns in consumption in migraineurs, migraineurs with aura and non-migraine headache sufferers. They looked for allergy responses but couldn't find any so we're thinking it might be a different mechanism that was at work? I don't have aura.
Maybe so re diet, although I also had a hemiplegic migraine, just once, before I gave up cheese. When it comes to neurological issues, there's so much they don't know, and any drugs to treat migraine are a bit sledgehammer and nut I think, I was offered various drugs, many of which were also used in mental illness such as bi polar. I never accepted them though... Never been sure if my one sided severe headaches without aura were actually migraine or not, but they've gone too since I stopped the cheese, and I did have a a big cheese habit, almost addicted. We're all different aren't we, I'm so glad I seem to have found a simple solution... except I still find it difficult to walk past a good Brie in the supermarket!
Yes absolutely, I'd give up cheese in a heartbeat if I could go without migraine!When my daughter was born she had really bad colic and I had to give up caffeine, gluten, lactose for 6 months just incase it was hurting her through my breast milk sadly it didn't help her or me ☹️.
I guess I'm the opposite to you I've taken SO many drugs, injectables, transcranial stimulation devices etc to try and escape the pain. I do have a few other chronic pain conditions but I'm not as strong as you! The pain has kind of driven me mad really. They gave me morphine to take when I was pregnant but it didn't work on me so I gave it back to them which was a good thing really. All these things come at a cost though don't they, mind you hemiplagic migraines are scary.
Yea, the scariest thing about it was being told I'd had a stroke... the MRI showed white areas in the brain but thank heavens I'd had a brain MRI 3 months before elsewhere for something else, and I remembered them mentioning white areas or lesions, so I asked the hospital to access the previous scan and hey presto, they were exactly the same, no difference, no stroke. But that word 'stroke' stayed on my medical records for a couple of years till I managed to get it struck off. Took about 6-8 weeks till my left arm and leg felt normal again, though my speech was okay after 3 or 4 days. At my age, it could just have easily been a stroke... As for pain, I was lucky there - I found using co codomol took the edge off enough to make it just about bearable, though as you say, there's always a price, for me in the form of theh contents of my bowel turning to concrete. I seem to respond well to codeine based pain relief in terms of pain though.I wish you the best with your migraine...
Hemiplegic migraines are so scary!! Thank you for sharing your experience with me, it helps to know I'm not the only one that suffers with hemiplegic migraine - it's crazy that the body mimics a stroke but I'm very glad that doctors take the symptoms seriously, everytime I've had a hemiplegic attack the doctors are very quick to respond
I haven't had a hemiplagic migraines, nothing so terrifying, although the hospital did think I was having a stroke once. I do have one side of my face drop, particularly my left eye as my autonomic response to migraine. I've now had migraine so much recently it seems to have permanently dropped eyelid so I kind of look like I've had a stroke anyway 🙄
Thank you for sharing your experience with me and I'm sorry that you've been struggling with chronic pain for so many years. I will definitely be making an active effort to cut down my use of painkillers. Although what you're going through must be awful, I'm glad there are other people out there that understand how I feel. And I always find I crave sweet foods before and after my migraines, I thought this was because I'm just a sweet tooth!!
Your story is very similar to mine. GPs are clueless about migraine and generally neurology. I work as an educator in Neurosciences so I can easily see that they don’t have the most basic understanding. Most doctors get very little exposure to neurology during their training. Due to their arrogance they will not admit that they don’t have a clue but will treat you as anxious or crazy. I deteriorated badly as they failed to prescribe prophylaxis drugs. I then wrote a big complaint letter to the GP practice stating their incompetence and negligence in my care. I was referred to neurologist but took almost a year to get an appointment. In the meanwhile I saw one privately. The issue with me is that I don’t tolerate most drugs. I am on Nortriptyline which I have been taking for a few years now but only 45mg as I can’t tolerate higher doses. I also had accupunture which has been helpful. I am due a review in September where I think they might suggest botox. I too don’t have a life for the last 3 and a half years. I had lots of sickness absence from work and I an hardly functioning. I am in my early 40s
I've just booked my first acupuncture session so hopefully I respond well to it - I'm willing to try anything at this point! I'm sorry you've had such a bad experience with the GP, I really do believe there should be better training and more resources available, although I do sympathise with the GP's as they are underfunded and overstretched. It's an awful feeling knowing you are missing out on so much in life, I hope you are able to get your migraines under control soon
I too suffer with chronic migraine and hemicrania continua I can’t remember what it feels to not have a headache. I have been under a neurologist for a number of years and the first thing I had to do was cut out all painkillers for 2 months along with caffeine as your body gets to the point that pain relief does nothing.
It was very hard but worth it as when I take painkillers now they work on my migraines. I have to limit them to once a week and no caffeine.
I would see a different GP and request a referral to a neurologist. It doesn’t matter what dose of preventative medications you have tried it’s just important how many you have tried. I have tried so many I’ve lost count and still not found anything that helps. I’m on the very long list for Botox.
I hope you find a solution and some relief I know it’s very hard not to lose hope.
Thank you very much for sharing your experience with me, I am definitely going to make a conscious effort to reduce the amount of painkillers I take. I think my next step will be to request to see a different GP
Call up for cancellation appointments every now and again (for the botox). I called up and got in on a cancellation it saved me I dont know how much time on the waitlist
Hi Ellie. Sorry to hear that you suffer like this. One thing that seems to help a bit with migraines is daily routine: you need to eat each meal at around the same time, get up and go to bed at around the same, etc.. Avoid what is too much of everything. This means, have balanced meals as much as you can, balanced activities (a bit of everything every day), etc... One thing you need to understand is that the NHS will try its hardest to spend as little as they can on you. Migraine is not fatal and a GP did confirm to me that it is still seen as a 'mental illness' by many of his colleagues, particularly if you're a woman. Don't get angry about it but try to see how you can navigate the system in order to get what you need. Some of the comments above were correct, you need to educate yourself and advocate for yourself. I agree about the dosage of medic, it has nothing to do with you being able to get Botox or anti-CGRPs. As long as you had so many medic, you should go to the next stage. However, in my case Botox made me very unwell. Nothing is side-effects free. And yes, they LOVE Topiramate, don't they? I guess you're aware that aspirin and ibuprofen are the same thing, more or less? Don't bother with paracetamol, won't help you. It is not what you take that counts but how often you take it. You can take naproxen and triptan on the same day, and even 2 triptans within 24 hours of each other and this will count as 1 of your 6 days per month you can actually take something before getting into overuse. Try to see if your GP practice would sponsor you to go to the National Migraine Centre. Otherwise it is very expensive. All the best.
My daily routine has definitely helped a little, I tend to notice now when I'm feeling a migraine starting rather than just being tired or hungry. I never considered it from the perspective of it not being life threatening (maybe that's naive of me!) but it really helps put into perspective how doctors view the condition. And I never knew your GP practice could sponsor you to go to the National Migraine Centre! Thank you very much ☺️
As you'll have gathered, migraine symptoms are many and varied, as are the triggers that sufferers report. An age-old medical condition, the pathology of migraine remains sketchy. It's because GPs' and even neurologists' understanding is limited that they appear to offer so little support, when we assume they could be more helpful.
I experienced my first attack at twice your age. Scores of migraines later, I still can't point to definite triggers, just to a few risk factors that can combine to make a fatal brew.
Now, a neurologist tells me I have chronic migraine, and a normal MRI tells me it's nothing more sinister. My diary tells me there are more "good" days than bad, so the combination of low dose Topiramate and Amitriptyline must be doing something, right?
Except that those meds, like the various triptans I tried before them, didn't really help. In fact the full dose of Topiramate was merely a nightmare of side effects. Only three kinds of treatment have had any positive effect on my migraine in its chronic phase. Acupuncture I almost gave up on, until sights were adjusted to target the area adjacent to the cervical spine, then came some relief. Several chiropractic sessions followed, with exercises focused on neck mobilisation. That produced further improvement, though interspersed with bad days, i.e. disabling attacks. The "treatment" that has helped most is the most recent, and that was simply changing my sleeping position.
Back to your concerns. It's tough to have to go through this, especially at your age. It sounds like you are certainly due a second consultation with a neurologist as a priority, as your referrals have apparently failed to get you an appointment. You should push for this. I'm concerned that your GP is sending you back on the same trail of meds at increased doses. Some of these drugs have unpredictable side effects, and doses should be adjusted gradually both up and down. Again, if you have hemiplegia you may need a neurologist to prescribe a different drug.
Meanwhile, I doubt that your pineal cyst is contributing to your migraines if we can trust the experts
Oh, and magnesium deficiency could cause headache, but as a general cause of migraines, forget it. It's old folk like me who take supplementary magnesium.
Thank you for sharing your experience with me, I'm hopeful about acupuncture. I hope your migraine becomes a little easier to deal with, chronic migraine really isn't fun!
So sorry to hear this also. Docs only want to shove as many meds down our necks as poss and its a terrible way to treat the bad heads. If you have already done the whole lifestyle change, can you look at alternative therapies such acupuncture etc.? I decided to go medication free from March. Although I am still getting them, they are less severe (more what I call headaches and not migraines, sometime hit and miss tho) and also rather than lasting two days, more so over night and then gone the next day. Not easy of course, but the idea is that you reset your brain and pain pathways, almost that your brain will start to NOT expect something to treat the pain. Otherwise, Im at a loss, sorry, still trying things myself.
So so sorry that you're going through this. Sadly drs..and neurologists in particular...don't like to see or treat migraine patients as it is a condition which they are unable to cure.I've been a migraine sufferer since the age of 2 and my migraines escalated approx 10 to 12 years ago. It was only following the first of my hemiplegic episodes that I saw a neurologist and I hate to fight for that, with my GP contacting them 4 times before they would agree to see me. They didn't even come to see me during a hospital admission even though the A and E DR said it was imperative I saw someone.
I too, have a number of other medical conditions where I am required to take medication including pain killers and that is usually the first thing they jump on but I have persevered and after 3yrs, am not at the stage where they don't even mention them.
Don't give up. You've been given some great advice here and all I would add is to persevere, keep at the DR's until they do something for you x
I'm so sorry you've been through all this. You know your condition better than anyone and it may help to write down all your medical history for the new GP when you get one. Then you can start again and finally get to see a consultant. In the meantime, you might want to look at some kind of talking therapy, as migraine is often made worse by stress and not getting heard by the authorities is very stressful. All the suggestions here are worth a try - cheese, vitamins and so on, but you need a sympathetic specialist most of all.
hi Ellie, so sorry to read your post a lot of which resonates with my situation although I was lucky to be referred to a neurologist due to identifying a meningioma.
I’ve was prescribed three different oral treatments and the latest (candasartan) I had an allergic reaction. My neurologist based at Southampton hospital has referred me for agnostic treatment (although I now have to keep a migraine diary for a further three months despite suffering different degrees of head pain and migraine most days). Like you no one has recognised my varying symptoms (including swelling of the head & face) or defined a specific migraine. I would fight your case to be referred to a migraine clinic if you have any fight left in you. Good luck
I have found Solpadeine Max - paracetamol, caffeine and codeine - staves off most attacks if I take it early enough. It is dissolvable so you know quickly if it is working - catching it early is key. Scary people in life and cataclysmic events used to bring them on - get them less now I am past menopause. The codeine seems to help especially. The Migraine Brain is a good book / explains what you go through.
I’m so sorry that you feel like this - I have been feeling exactly the same up until today, when I got my first Botox injection. I get migraines every single day, the pain is physically pounding and drains every inch of life from my body. I have tried amitriptyline, propanolol, pizotifen, sumatriptan, now taking Topiramate and finally having Botox now which is every 3 months. You need to push and push to see a consultant. As you’ve tried at least 3 preventative medications you will qualify for an Ajovy injection - a monthly injection (preventative again), you’ll need at least 3 of these to see if they work for you. And then usually if that doesn’t work, they’ll try Botox (that’s what they did for me anyway).
Similar to you, I’m 25, feel like I’m missing out on so much in my life and have absolutely no excitement for anything. I dread social events as I know I’ll be in pain and I physically have to drag myself out of bed in the morning. I’m scared it’s going to start affecting my relationship soon - even though my boyfriend is the most supportive person in the world.
It took me over 3 months to get my Botox, I was so unwell last week and so depressed, I just didn’t stop ringing the consultant. One person told me I wasn’t even on the list, then it was you’ll have an appointment within the next month, then they rung me offering an appointment as they had a cancellation. I think if you really hassle the health care professionals they will get sick and tired of you eventually, and will do something about it.
I would recommend buying a cold cap from Amazon - it goes in the freezer for an hour and then put it on your head, super cold at first but then bloody lovely after. My consultant also tells me to avoid painkillers so I feel your pain - I simply can’t avoid them - they provide the most effective relief.
Yes I too have been through all of this. Have tried all these meds accept the nortriptaline. I was diagnosed bipolar so maybe that is why. I did some research and found they are linked to bi polar. I wake up everyday with a headache sometimes it eases up and others it last off and on all day! The migraine specialist that said he would help me get to the root cause doesn’t take my insurance. So I only can work part time. Miss work constantly because of these horrific issues (migraines)! I had a craniotomy that was supposed to help but it didn’t. Thank you again for sharing it helped me open up about my stuff. I hope it gets better for you. I’m still trying to find a doctor. . God bless you.
First of all, I hope you've come a little further on your journey, since your original post.
I'm so sorry to hear you are suffering like this. It certainly seems as though you are being passed around a lot. The trouble I found with GPs is that they will treat the symptoms (pain, nausea and aura etc) and not the actual problem. Some GPs do have a specialism in headaches, so it might be worth doing a bit of research locally to see if you have one.
The only way I eventually was able to unravel my issues was to go private for them to set up a plan so that my GP could follow (This was with National Migraine Centre). Whilst I appreciate not everyone can afford this, I felt that living with the pain was worth paying out to actually get listened to. I don't know if they offer a plan to help with payment, but it would definitely be worth reaching out to them.
I must have tried around 20+ medications previously (all at maximum dosage), to no avail. I even tried a clinical test on an electrical device which stimulated the Vegas nerve.
What I can say is that it is worth every effort in fighting your case with GP and be seen by a headache specialist. As most people have said, your usage of analgesic medication may have to be reduced, as it was in my case. I had to completely detox off all of them, which made me extremely anxious. Here was me thinking they were helping, but actually causing Medication Overuse Headache. Once off, I was then able to breakdown each headache condition I have with a specialist. I was finally getting somewhere... I couldn't have done it without NMC.
Fortunately now, I am under the care of one of the UKs top specialists in headaches, and have a direct line to the group headache team. I'm not sure if I can disclose who this is on this forum, which is the only reason I haven't mentioned names.
There is definitely a range of treatments available which may help you such as Sumitriptan intra muscular injections, Greater Occipital Nerve Block, Multi Cranial Nerve Block, Botox and CRPG antibodies. Again, these can only be offered by the right specialist.
I wish you the best of luck in your journey, as I truly understand how migraines can be so disabling and life ruining.
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