Migraine symptoms constantly

[Bountyboo]

Anyone else ?
I am under neurology and have been for many years and diagnosed New daily persistent headache with migraine symptoms amongst other things including migraine with aura ( once. month ) Hermicrania continu and ice pick headaches - yes im THAT lucky ha
My issue is so far , no meds have helped . I have daily headache but i have spells where i am literally nauseous 24/7 and mix of throbbing snd ice pick headaches whicb could last six weeks before reverting back to daily ( slightly ) more bearable headache , agaib never losing daily migraine symptoms like varying levels of nasuea and light sensitivty
Anyone similar? I feel im in the rarity of people who can say they have awful migraine level pain for weeks on end instead of the classic three days but im interested to see if anyone does and if so has ANYTHING helped …. im currently back on Amitriptline whilst i await the new CGRP drug ( tried both Ajovy and Emagality and no joy )

@JamesWebbSpaceTelescope i hope he finds relief did he have history of migraine before and does he have any other symptoms alongside head pain ? x

I’ve been on atogepant for a few months now and it really is life changing. I did feel a bit nauseous and tired the first few weeks but the side effects wore off after a month or so.

No history just had a fairly regular virus aged 16 with a headache that never went away. Completely debilitating and he had missed nearly all of school in the time. He had tried 3 different preventative that have done very little so this is the next step. 🤞🏻

Probably worth chasing up your GP practice yourself

@Tarrarra this is really reassuring . What were your headaches like before and have you tried many other preventatives ? x

@DivorcedMumOfAdults yep i am . When i knew letter was sent i rang and also done an e consult - had a message back saying its been passed to doctor to read and action - that was last week , rang today and still not read letter which im really disapointed in as normally they are very good . Unsure how more i can really push it ? x

I've suffered horrific headaches since I was a child. They reached peak awfulness a couple of years ago and I was referred to the national hospital for neurology and neurosurgery, you a doctor who just treats severe migraine. I've been under general neurology for years so this was a further referral. The thing he suggested which apparently had the most research, and which has been really effective was taking high dose magnesium 400mg, and B2 400mg ( get dolovent online to have them in one combined pill). He also recommended one feverfew tablet daily but I didn't take this. He stressed the importance of a couple of littles of water every day. Long term this has enormously reduced the headaches. If I get them now I take request eltriptan the moment pain starts and dexaketaprofen and antiemetic to stop vomiting if required. The need for the rescue treatment is much less now. I also found that a lot of headache issues can arise from my neck, and for me, seeing an osteopath who specialized in neurology could actually get rid of the interminable blinding headaches and stop them coming back longer term. Hopefully some of these things might help you as well

@Bountyboo I had tried topirimate, propranolol and amytriptaline. I’d kind of given up hope and was getting around 18-20 migraine days a month. I now get 1 or 2 and they aren’t as severe.

I was prescribed them by the migraine clinic attached to a local gp surgery and they’ve asked my own gp to take over prescribing now.

I will post my story on here as it might just help someone else. I have name changed as it could be identifying.

I have been a regular migraine sufferer since my teens with a variety of triggers including food, lights, heat etc. Last year I had an accident that caused whiplash and also a few broken bones. The broken bones were treated, and I eventually went back to work. The migraines with aura got much worse, almost daily and I started blaming my stress levels and the computer screens. I bought filters and played with brightness, changed screens etc to no avail. I couldn't work out what else had changed.

Several months later I decided to get some physio for the whiplash which had been annoying me but nothing serious. I had about four sessions of physio when I noticed a significant reduction in the number of migraines and over time they have decreased back to the level of several years ago. Now I just get the occassional migraine that is probably related to diet, heat or some other familiar trigger.

If you haven't considered it a possibility, it make be worth checking your spinal alignment etc with a physio or similar just to rule it out. It was such an easy fix that I wish I had done something about it months previously.

@DreamingOfASilentNight thankyou for this - what where your headaches like did you have them constant and did you have nausea etc . So glad things are better for you now :)

@Bountyboo in reply yes headaches were at one point constant. I've had both severe migraines and cluster headaches. One makes you feel like you daren't move, the other makes you feel like you just need to keep moving constantly to try and distract yourself from the shiny at one point I was all but banging my head against a wall to get relief from the pain.

The only real headache trigger for me is barometric pressure, ie the weather. I d only need to look at the forecast to know what's going to happen, a headache tells me. I also know that I get insane munchies for loads if chocolate, something which I don't usually really eat just before a headache starts. It could be easy to think the chocolate causes the headache, but In fact you're busy is already going down that path biologically and you're body is trying to treat itself, you are craving certain nutrients, in the case of chocolate it's magnesium apparently. Now I get the mad chocolate craving and take extra magnesium tables and didn't have loads of chocolate instead the headaches are relatively short lived. For the nausea and/it vomiting I now take an over the counter medicine called Prochlorperazine ( brand name buccastem) which you lodge between your upper lip and teeth rather than swallowing and it's absorbed through the membranes in the mouth so you can't vomit it back up. Works very well for me. I've lived with the headaches since I was about 6 so now I'm my late 40s I'm glad to have finally have some vague ability to control them slightly. I also always wear sunglasses as I find my eyes are much more sensitive to the light which makes my head hurt more easily, so that'll an easy thing to try.

Chinese acupuncture works for me.

I also find that if I don’t exercise I get them. I think it must stem from tension in my neck and back. Longest one was 17 days straight - that’s when I went for Chinese acupuncture.

Since the acupuncture - exercise and aspirin with caffeine can work if I feel one brewing. The suboccipital muscles at the back of my head are an area I tend to massage regularly, I’m pretty sure that tension in that area doesn’t help. Leaning your head on a ledge or the edge of the bath (while you relax in warm water) and slowly rolling left to right really helps.

No I don't have nausea with them. The neurologist only mentioned constipation as the main side effect and I think that maybe it's because it's the significant one he's come across? It was cleared for use in my area in December so is a very new drug. I'm so happy though as it's changed my life considerably. The weight loss is a bonus as I needed to lose a little poundage or two!😄

Ring again tomorrow saying you'd hoped to get your prescription for the weekend. If you don't pester them it'll just sit there.

Yes, she had them constantly from age 12 to age 19.

At one point she came off them (aged 14) and she was okay for a while but then they came back with a vengence. Her normal dose didn't work anymore and GP tried lots of other medications which also didn't work. Eventually a locum suggested a high dose for a month (3 tablets?) to get them under control then cut back to the normal (2 tablets?) for maintenance - basically do the opposite of slowly increasing dosage which is what normally happens with all medicines. This worked and she remained on the normal daily dose until she was 19. She stopped then because she decided she was an "independent woman" and fortunately the migraines didn't fully return. She still gets them but probably one every 3-4 months now instead of permanent and doesn't take any medication except for paracetamol (and dark room/sleep).

Apparently they can stop working but they can also suddenly start working again after a couple of years break. It's a thing. Might be worth trying again?

Has the GP run blood tests on you ?
could be an indicator of something

@Robynroo yes brain scans blood tests the works x

@Becauseofit letter been sent and hopefully should get prescription next week !

Son had his first injection of aimovig today. For those of you who have use this how long does it take to start working?

It has been an increadibly rough 2 years and I really hope this works.