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 )

Hi, it looks like no-one on here has a bad migraine case as you currently.
I just wanted to reply as I really feel for you as I know hiw miserable it is to have migraines a few times a month for days at a time let alone what you're going through.
I've recently been prescribed the newest CRGP Atogepant and it's been a game changer for me.

Hi.Op - i get a mix of migraines regularly. Sometimes hemiplegic. Ranging from a few days to 3 weeks. The best things that help me are Syndol (from chemist) but you need the one with the muscle relaxant for it to work. I also get sumatriptan from the chemist to have on the occasions where I can't break the cycle of a continuous migraine. Naproxen from the GP as well in the drawer to keep in as back up. I find i need to switch a medicine if the migraine becomes longer than 3 or 4 days and that helps.

Coca cola (full fat), ready salted crisps and darkish room.

@Becauseofit thanks for reply ! Im due to start this in next few weeks so fingers crossed ! Any side effects ? x

@Valhalla17 thanks for suggestions ! Do you get daily pain or is it more episodic in nature?

Mostly episodic, but i do go through periods where i have daily pain over a few months. Triggers are varied and I've never really figured it out over the years, but lots of trial and error on the meds where ive found what generally works for me or at least alleviates. I know its miserable though! Your situation sounds horrendous, I'm sorry 😞

Yes but minor. Constipation and neurologist told me this before I started and just to do usual things for relief like fruit/veg exercise etc. You know the drill. Also only to take Senna if needed which I haven't. A migraine poster on here who takes it said Naked green smoothies are good so I've been having those but I'm going to make some homemade ones as it can get a bit costly. He also said that I can take Sumatryptan with it which has helped with a few odd days and kept it from getting worse although it was more like a standard headache and helped to keep it at bay. Nothing like my usual migraines. I would ask them what you can take with it so you have both a preventer and reliever available as a back up.
I had trouble getting hold of my prescription at first as there were manufacufacturing problems. Neurologist here only prescribes from hospital pharmacist and then refers to GP to prescribe.
I really hope it works for you. I don't know anyone in rl that takes it so would be interested to know how you get on.

The neurologist I saw said there wasn't such a thing as triggers!! This blew my mind! I wish I'd asked him why are there always things on the net about finding your combination of triggers then and why hasn't it been announced on the news? As that's a big statement in my mind. Must be some research somewhere. I'm due for a follow up conversation soon and will ask him and report back. I would say mine are stress and lack of sleep combo.

Years ago I saw a consultant at King’s in London and he prescribed Epilim which cured my constant migraines. I still use sumatriptan when I get a migraine.

Take a look at this discussion on YouTube if you are open to trying something different. Ketogenic Therapy for Migraine Management - with Dr. Elena Gross

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Best of luck.

All of this. The triptan I use is Zolmitriptan. It doesn't always work but Syndol (the strongest one - you have to ask for it, it's kept behind the counter) is sometimes better. Also, some kind soul posted on a different thread about regular B vitamins, I take the Better You spray for B vitamins twice a day (as recommended). It's often on 3 for 2 at Boots or sometimes available in TK Maxx at reduced price.

The only thing that worked for my DD's almost permanent migraines was taking the daily preventer pizotifen. It was like a miracle cure. After about 4 years she stopped taking it and the migraines rarely come back (unless having multiple late nights, junk food etc, known triggers).

@Becauseofit Ive tried two other CGrps one worked great Emagality but sadly i developed awful side effects so had to come of it .
Issue i have at minute is neuro cant begin prescribing until has consent off gp they will continue after initial 3 month trial and this seems to be causing the issue at minute its taking time - ill keep you updated how i get on x

@Pixiedust1234 Hi , was this prescribed when she was younger i got given same as a teen but effects wore off sadly. Is she on anything now ? x

@Rocknrollstar Thanks for reply , were you gettibg migraine symptoms like nausea constantly ? Im strugglnig to sleep with it its awful !

Yes I can relate. I was prescribed candesartan 2mg at first then after 8 weeks went onto 4mg. It's the only thing that has helped. It's licenced as a blood pressure medication but my neurologist has a lot of experience with it for daily migraines.
I haven't had a migraine for weeks now which is absolutely incredible.

@Onlycoffee thats amazing ! So happy for you ! I tried this but side effects too bad sadly , Did you have daily nausea that is most debilitating for me at moment as its never been so intense especially in bed weirdly …

I'm so sorry it didn't work for you. I am not fully recovered from the time when I was having daily migraines (even though I've not had a migraine recently) so in hoping the 4mg will work and I don't have to go higher.

Is it just nausea or are you dizzy/vertigo with it? My nausea has improved since taking the candesartan. Sometimes I need to remember to drink more water.

I just remembered I also take magnesium l-threonate supplements, there are different magnesium types but this works best for me.

My adult dd had this. Not sure whether amitriptyline or chiropractor did the trick but she stopped the tabs and has three monthly chiropractic sessions and no probs since.

@Onlycoffee i do get vertigo and dizziness too but the nausea ( pain aside ) was stand out . Frustrating thing for me is at minute its just one long massive headache so cant identifty triggers etc and its non stop so no beginning or end - i always wonder how its possible to be a non stop migraine seems so unheard of ! Was your symptoms 24/7 or did you gey any relief ?

@RuthW ive just started back on amitriptline whilst i await new meds - what were here symtpoms and was it 24/7 ? did she start as episodic or has it always been daily ? Always interested to here others stories as i dont think its common . Glad shes doing better :) x

Mine stopped more or less for good when I went on blood pressure medication. Also identified that eating crisps, any crisps triggered a migraine.

Non stop as well. It became so non stop that I didn't recognise it as "migraine" any longer.
I couldn't function, my head hurt constantly, I was utterly exhausted.

I finally saw a wonderful neurologist who explained that my brain wasn't able to repair /rebalance itself as would normally happen after a migraine.

He said that migraines were a neurological event that disrupts the electrical balance in the brain, and my brain was stuck in active migraine.

Blood vessels were constantly restricting and widening in an effort to find balance (but constantly overshooting) so
he said the way candesartan works is to interrupt at that point- help the blood vessels rebalance and calm everything down.

He expects me to be on them for around 10 months.

I really hope you can find something to give you relief.

My neurologist wrote a letter to my gp almost straightaway who agreed it. Know this might not be the case everywhere as it's an expensive drug acc to the neurologist.
Have remembered a couple of other sudd effects listed....dizziness, decrease in appetite and weightless. Obviously the last 2 must go hand in hand and it has affected my appetite so subsequently have lost weight.
Good luck x

@Becauseofit thanks for this . I will contact go again tomorrow as i know letter is with them . Do you have nausea with it apparently thats a listen side effect ! x

Very glad I stumbled onto this thread. My son has NDPH and is about to start an anti CGRP. He has had constant pain for 2 years now so I am really hoping this will give him some relief.