Chronic migraine

Hi all, I've recently been diagnosed with chronic migraine which is resisting all treatment so far but I'm not convinced it is a migraine as the pain doesn't feel the same as previous migraines I've had. I just wondered if anyone has similar symptoms for a migraine or anything else.

The headaches started 11 weeks ago and started as general headaches which were manageable with ibruprofen and when I went to the GP it was purely because I was worried about how many tablets I was taking. As things progressed the headaches were getting worse so she put me on amitriptilyne starting at 10mg then eventually progressed to 30mg per night which did nothing for the headaches. I've been back to the doctor on many occasions sometimes crying because the headaches are so bad now that I'm signed off work. They are only on the left hand side and it's a very sharp pain which starts at the back of my head and goes over the front then to the left side round my eye and sometimes my teeth. It's so intense I can't do anything I'm so irritated and emotional when they come on. It's also started waking me up at night which is horrible and not helping. I'm getting them about 4 times a day at the moment, I feel so low as I can't do anything. I also have a 10 month old baby and I can't look after him properly when I'm like that. I have my husband around thankfully but it's taking over my life. The doctor thinks it's due to stress. I had migraines when I was pregnant but they were much more at the front and a pulsing pain. I had an app with a neurologist last week and he put me on propronalol slow release tablets but they haven't had any affect yet either. I'm at my wits end and have convinced myself it's something more serious than a migraine. Sorry for the long post. Anyone got any advice or words of wisdom?

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  • Hi,

    Sorry you're suffering as you are and for the longer reply. I know it's no consolation, what you describe is exactly the same as my migraines, but mine are all on the right. So we make a pair, LOL.

    That doesn't mean you shouldn't follow through on your concerns. I would ask the neurologist to do an MRI scan. There's nothing scary about the scan and it will rule out anything else. Always go with what you're specialist suggests, but don't be scared to ask for a second opinion. Not all doctors/specialists are created equal.

    But in the short term, here are some things that were recommended to me by the headache clinic I attend, which might be helpful:

    Keep a migraine diary, helps identify any triggers which aren't always food ones, I have physical triggers, and a diary can help the specialist.

    Don't take too many pain killers, as this can lead to rebound (medication overuse) headaches, that can be a worse vicious cycle.

    Identify your sensitivities, my biggest is sunlight, so I've invested in good quality polarised sunglasses.

    Try some relaxation breathing techniques, sounds silly, but I did try and sometimes it helps, especially with the nausea.

    Know you're not alone thinking it's more than a migraine, I've woken at 3 am in agony, convinced I have an aneurysm!

    Don't listen when non migraine sufferers say 'it's just a bad headache'. Anyone who hasn't experienced the excruciating pain of migraine attacks and all the things that accompany it, has no idea what pain you're suffering.

    I wish you well and hope you find something/someone to help you. Feel free to ask me any questions, I will help if I can.

    Take care, catmag.

  • Thanks for your reply I'll try the things you have suggested. Think I'm just struggling with the intensity and frequency I'm not getting a break at all just now making me feel so down. I'll keep an open mind about the cause hopefully will find something that works soon. Take care, L

  • There are many, many potential causes of headache as you can see here from the following link (if the link doesn't work, do a search for headache classification and look at the wikipedia entry) and so you may be right that there's more going on with you that hasn't been correctly diagnosed, and hence you feel worried and uneasy. I can definitely relate to that - but I think if it was life threatening they would have picked that up.

    You say you're getting them four times a day so that sounds like cluster headache or cluster migraine. You have had a baby and changing hormone levels can be a trigger. You should get your iron and B12 checked if they haven't been, as well. Personally I doubt it's stress (apart from the stress of having terrible pain on a regular basis) but this is the go-to diagnosis for most doctors who are not headache specialists and I think is very unhelpful. It also tends to be patient-blaming as we then can feel we are causing our own disorder in some mysterious way.

    Re. your diagnosis, migraine can change its pattern so it can still be migraine even if it isn't the same as it was before.

    en.wikipedia.org/wiki/Inter...

  • Thanks for your reply Frodo. I had already thought it could be due to my hormone levels as I have some other things going on which are reflective of that. I'm just really struggling with the intensity and frequency not getting a break at all and it's getting me so down. Hopefully something will work soon or can find the correct cause at least. Take care, L

  • I've been there with the daily intense migraine (now weekly) so I know how truly, truly awful it is. The only thing that really helps me is using ice packs on my neck.

    I had migraine while pregnant but strangely, not afterwards (apart from episodically) and I wonder now if the reason may have been that I was given iron tablets as I'd had an emergency c-section which caused blood loss and anaemia. Not telling you this for sympathy but just to ensure you have had all that kind of thing checked out.

    Other people have mentioned occipital neuralgia and cervicogenic headache, also worth asking about. Maybe nerve blocks would be available, or I've read that steroids are sometimes used to break a migraine cycle. There's a device called Cephaly you can buy which is a nerve stimulator and doesn't involve more medication.

  • I have very similar symptoms to what your describing pain behind left eye in jaw cannot concentrate on anything loud noises bright lights are a no no Once it starts it can last for 2 to 4 days and the pain doesn't diminish at all it's that bad i can't sleep the doctor gave me sumatriptan that helps but a friend suggested going to a chiropractor my goodness what a help he is since I've started going my migraines are down to 1 a month I hope this helps you. too it's worth a try I had gotten to the point where i was losing hope of ever having a semi normal life again let me know how you are all the best

  • Never thought about a chiropractor definitely worth a try - thank you. L

  • Try looking up occipital neuralgia and see if those mirror your symptoms. I was just diagnosed with that. Just a thought.....

  • Sorry to hear your suffering from migraines I've had them every day for the past 18 years, I expect they've already told you about the more tablets you take the more headaches you can trigger off that is true but not always mine are triggered of by what they cal cerveronic headaches which trigger my migained all this from trapped nerves in my necl/cervical spine and the damage from arthritis, if you feel your not getting anywhere with the treatment from your GP then ask him or her for a second opinion at the national nurology Queens Square London part of the UCLH I did and that how I found out what was coursing mine hope you get it sorted out fast and your back to good health soon Keith59

  • Thanks for that helpful information Keith59

  • Hi. Look up cluster headaches. My husband takes Verapamil and now that he has the dose right he can control them. Good luck xx

  • Thanks Sarah will do x

  • occipital neuralgia also came to mind. So sorry you're suffering. Persist! Something out there will help.

  • Thank you

  • I was diagnosed when I was 18. Then they went in my 20's and came back with a vengeance after I had my baby. I agree with everyone else. I'm on the same drugs as you but have beeen on them before and they only worked for a while then. Neurologist tried an epilepsy drug but it didn't agree with me. You're GP might refer you? Seeing an osteopath that specialises in migraine pain (or chiropractor) can really help. The series 'doctor in the house' featured a lady who suffers with cluster migraines - might be worth a watch? I've also got an oxygen canister (amazon) which has helped, diet, sleep (not easy i know) and definitely a diary. There's an app that I used which really helped me track certain triggers and early warning signs like incessant yawning, increased thirst etc. Good luck, you're not going mad and you're not alone x

  • I got referred to a headache clinic and the doctor there mentioned trying the epilepsy drug next so will see if it helps me. I've done some research on cluster headaches and think mine seem more like those I'm just so frustrated by the lack of progress. Feel so alone and like a shadow of myself :( x

  • Sorry you're suffering. I have chronic migraine and have tried most meds. I now have Botox injections in my head and neck every three months. Headaches have gone from 20-25 a month to about 6-7. Aspirin takes most away now. Occasionally I have to take sumatriptan. Not nice but they do take them away.

    I recommend deep freeze gel on your neck and forehead it really helps with the pain. Avoid your eyes though.

    Good luck I hope you find some relief xx

  • You get Botox injection in your neck? My Neuro wouldn't do it for me. I strongly feel that my migraines 80% of the time are caused by neck pain. My muscles get so tense. Would you mind sharing more about your neck issues? The major area for me is the base of my sckull where my neck meets my sckulll. Sorry, my ability to explain things have gotten worse😊

    Thank you!

    Paula

  • Pvancourt Just a quick thought - have you ever had an accident? ... or severe whiplash ? Some people suffer from a condition called cervical kyphosis [abnormal forward curve in the cervical spine] which can give really bad headaches - NHS usually would avoid any exploratory diagnosis in order to save money but this one can be detected quite easily with the help of a simple X-ray.

  • Troy04

    Thank you for the information. I was in a car accident 30+ years ago and I do think my neck pain has something to do with my migraines. I'm gettting an X-ray next week so that should tell me a lot.

    Thanks!

  • Pvancourt Ok, please let us know what the x-ray reveals. If there is a problem of the spine it is possible to make it better, and hopefully that should ease out the headaches,... keep your fingers crossed!

  • Will do...thx!

  • Troy04

    I have the results from my xrays of my neck. I haven't met with the Dr yet...my hope was for injections to help with the pain and migraines. Since you seem to have some knowledge in this area....do you understand any of the following?? Im lost.

    1-There is dextroscoliosis of the cervicothoracic (mild degree)

    2-spondylolistheses of C3on C4 and C4 on C5

    3-uncovertebral joint degenerative changes at all levels

    4-multi-level facet join degeerative changes

    I know your not a dr., but I get the sense that you may have been through something similar. Any thoughts on my next steps?

    Thank you!!

    Paula

  • Hi Pvancourt I personally have not been through these yet - anyway, as you would guess the results can be interpreted well by Orthopaedic consultant.

    Cervicothoracic scoliosis and cervical spondylosis can definitely cause headaches, but of course it will have other symptoms. The consultant should be hopefully able to diagnose and provide best course of action.

    Thank you for coming back to us and letting us know the test results !

  • Hi Paula my migraines usually start about 4 in the morning in the base of my skull, neck and shoulders. I was convinced it was arthritis or similar causing my migraine. The neurologist insisted the neck pain was migraine.

    The botox injections have reduced the neck pain massively. Therefore far fewer migraines.

    Botox treatment is 31 injections between eyes, hairline, over ears, base of skull line exactly where migraines start and shoulders.

    It's made a massive difference. I tried most meds, dual trigger point injections in lesser and great occipital nerve plus most alternative treatments. It's really helped me.

    Good luck Jackie xx

  • I've tried Botox 12 months the first time and about 6-8 months the second time with no relief. However, I'm wondering if my Nuerologist is hitting the right spots. I feel like if she could inject the right spot (base of my sckull) it would make a difference. I know Botox helps a lot of people and I'll probably give it another shot sometime in the future. Thank you for the reply'

  • Thank you for your reply I've been prescribed the sumatriptan nasal spray but didn't help last nights one which was particularly bad! I will try the deep freeze gel. Thank you x

  • Talk to your Doc about: Nimodipine, Indomithacin, flunarizine

  • The symptoms you're describing sound very simular to mine I can only tell you what I did last noght I went to see a chiropractor I had acupuncture and he cracked my neck my migraine disappeared overnight and when i woke this morning it's totally gone! The best nights sleep I've had a months I've also given up smoking and I don't drink alcohol anyway I've also stopped drinking coke because of the amount of tannings in it which seem to be a common cause of migraines

    I hope you're better very soon all the best Diane

  • Thanks for your reply I've cut out all caffeine but will definitely see about going to a chiropractor thank you. L.

  • Hi

    I'm really sorry to hear you have been suffering so much. It sounds like they could be cluster headaches. Have you been to the migraine clinic in London? They really helped me a lot! I have been having migraines that usually last about 2-4 days almost every week for the last 10 years. I felt so alone until I referred myself there and they knew much more than a GP. They told me to take frovatriptan, magnesium malate x3 a day and a magnesium oil spray to help with my constant neck and shoulder pain! I have recently cut out caffeine, cut my sugar intake down and gone on a gluten free diet, it instantly got rid of the constant pressure and niggly pain I always had in my the left side of my head! I'm feeling really good at the moment and just wanted to share my experience and things I've tried that might be helpful to you! I would also suggest and osteopath/chiropractor and a lot of issues can stem from neck tension.

    I hope you find something that helps you soon!

  • Thanks for your reply. I haven't been to the migraine clinic in London I'm in Scotland so hadn't heard of it. Can you self refer? I did think about trying gluten free diet but feel like I have no life at the moment and no enjoyment as already cut out all caffeine and chocolate and try to go to bed as early as possible none of which seems to be helping!! I will look into it more though as would love to feel normal again! Thank you, L

  • Yes you can self refer to the migraine clinic. You are quite far away but might be worth a try!

    I totally understand the feeling of having to give lots of different things up, I felt like I had no life at all and was constantly scared to do anything or eat anything, even the thought of having a migraine would be enough to bring one on! maybe chocolate and caffeine aren't triggers for you if you have had no effect, so maybe you could treat yourself to some chocolate again😊 I would definately recommend gluten free as I've just gone 20 days without a migraine and it's felt like a miracle! I know it's really miserable and feels like you have no quality of life but you just have to keep eliminating things to find the trigger that will help you and always have hope that you won't feel like this forever! I hope you feel better soon!

  • lrose08831 There are already lots of good advices here - I just wanted to point out that lack of proper sleep can cause chronic migraine / headaches. If you have 10 month old baby, there is nothing you can do. I really hope after a year or two, you would be able to have non-disruptive sleep which may ease the problem.

  • Thanks troy04 my baby is actually a really good sleeper although he wakens around 7.30am so if I've had a bad night I don't have a choice to stay in bed which definitely can make my head worse! Hopefully will find something that helps soon.

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