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Does anyone else on here have constant headaches that feel like nervy type pain? It’s the only way I can describe it really. Pretty much all over head… Ive had it most of the time for the last 4 years (our of nowhere) but pretty much constant for last year. Its unbearable at times…

I know what you’re talking about though mine isn’t constant. It seems like that’s one of the first issues a med would address. Are you on any?

Taken a few over years, topirimte, pregablin, Ami and now candasartan, tappering up currently under Dr S. Also had nerve blocks, Botox and amovig. None worked…:pensive:
Noise sensitivity (pain in the head) plus d/p…

Sorry mate. I looked at candasartan for visual snow but never took it.

Done the diet, quit caffeine and alcohol yet? Sounds to me like Chronic Daily Headache or as they are recently calling it now it seems Persistent Daily Headache. As @flutters says would seem first thing preventative might sort. Friend of mine who is a Classic Migraineur developed it, was told it’s on migraine spectrum was out on 120mg Propranolol. Bingo, they stopped virtually overnight and she’s not had another yet. Must be about nine months now.

I’d forgotten mine used to be daily. So many years and so many meds ago. Without Botox mine goes back to daily.

Diet and no caffeine started a month ago. Still not given up alcohol… find it a bit of a relief as mentioned before.
I’ve been diagnosed with chronic headache / migraine, NDPH and a few other things. Think all same, just different places on the spectrum.
I’m very jel of your friend, I want that to be me!
Think I’m on cand rather than propanol due to having asthma… I think they are quite similar though? I’m only on. 4mg, have to go up by 2mg every month, which seems slow, but that’s the advice.
I want my head and health back!!! I will never take for granted again when sorted!


As you say Propranolol contraindicated for asthmatics. Propranolol has the better profile for MAV from all I have researched though Candesartan has helped many for sure. Many people have contraindications for various drugs. I do for Amitriptyline. So we don’t all have access to all the possible alternative treatments unfortunately. All we need is to find one that works.

Ah my friend, yes she’s been very lucky and incidentally is a lifelong teetotaller. Not that you can attribute her success solely to that. She isn’t med sensitive and she got prompt treatment from her own doctor. Sure that helped.

Hi, yes…i had this daily until I managed to get up to 75mg of venlafaxine. Now on 150mg. That nerve pain still comes and goes, it’s very much linked to hormones for me. I’m also on propranolol and due to start ajovy at some point this summer. I often describe it to my hubby that it’s like someone scraping my head with the tip of a steak knife. I think meds are needed for this type of pain. I spent 2 years trying everything else before meds. Hope the cadesartan kicks in for you. Maybe look into effexor also as a back up? Take care

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Thanks @nin. That’s a good description. I can’t even find the words for the feeling… just want it to go now.

Hoping it will do the job soon. I see quite a few people are on effexor, Might ask my Dr about that one.

Just watched a programme on Amazon Prime,
Mystery Diagnosis, season 5, episode 6, about a women who’s headaches wouldn’t go away. After a load of tests, inc. on her heart (TEE exam) they discovered a hole in the heart, that apparently everyone is born with, but hers didn’t close up and had got bigger, which they believed was causing the migraines. She had surgery to close it up and the next day, headaches and associated symptoms gone!

Anyone ever heard of this before? It’s made me tempted to go and get it checked out…

I have/had a lot of daily headaches with the classic migraines sprinkled in. Part of my diagnosis is chronic migraine and daily headaches are a part of that. Have any of the meds touched the pain at all? Do you get migraines at all or just the headaches?

I trialed nortriptyline and topiramate and both helped with the pain, but eventually made the dizziness worse.

@Kara thanks. I wouldn’t have what you’d call classic migraines, although I’ve had a few, esp at the start 4 yrs again, but more constant headaches, and other migraine symptoms like flashing lights, zig zags, noise sensitive, brain fog, dizziness etc.
Symptoms have changed over the years, and pain has come down, but still there all the time and truly horrible.

Hard to say of drugs have made a difference etc…
I’ve just emailed a load of private hospitals to see if I can get examined for this heart thing. Tried almost everything else… clearly desperate to get better…

Yes, I have heard of it. It’s not News. There have been detailed erudite articles published on it couple of years ago at least. Also articles in the daily press. I have a feeling I read somewhere 400 had been found and corrected. That may even have been in the UK. Think I may have even put a link to it on here. Cannot remember. Sounds good eh. Having the operation and being cured overnight. I suspect it is very rare condition though. Not sure how they establish it as a cause though. Neurologists don’t do hearts! Just heard. In the UK at least There never seems any tendency to establish a root cause. Not for MAVers or migraineurs. Wonder what would make an unsealed heart hole seem obvious to a medic.

Oh for sure, explore all your options. Especially if it’s a heart thing, you wanna make sure you get it addressed.

I feel your pain though. Daily headaches are the worst. Hopefully you can find some relief soon!

Owch! Sounds painful. Definitely nerve pain I agree. Interesting the Venlafaxine stops it. A migraine specialist neuro tells me Venlafaxine won’t stop migraine which makes me wonder why people would take it then. Would seem odd. @Diana21 seemed to find it would. If it’s good for nerve pain which it appears to be it must work more like Amitriptyline which has been used low dose for chronic nerve pain for many years. I understand Amitriptyline is easier to tolerate for many.

Glad you are getting your heart checked out. That was one of the first things my doctor of internal medicine checked. Fortunately my heart is fine.
It’s the Vestibular Migraines that cause my headaches. I’ve been fighting this for almost 12 years! I’m currently taking 10mg Nortriptyline, 120 mg Verapamil and 2 capsules of Neuro Comfort for VM. I’ve not had a full blown VM attack for 16 months but have headaches quite often but not as severe as yours. I totally got off caffeine and most alcohol although there are times a hard seltzer or beer are too hard to pass😃. Last night I drank a small glass of red wine and I have a headache this morning.

Always worth checking out. Unlikely to have been missed though. Apparently a doctor should easily hear a difference when listening to your heart. The condition produces a different sort of swish as the blood flows through.

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Alcohol dehydrates as do a number of items like salt, spice etc all of the Migraine Diets don’t consume list.

Thanks all. @Onandon03, can’t really remember many or any checking for this, no doctor has ever mentioned as a possibility. First i ever heard of it was yesterday. Are you suggesting to just to go to a GP for checking? I’ve lost a lot of faith in doctors, esp GP’s. Would prefer a specialist.
I’ve read the results on migraines from this procedure is pretty inconclusive. Dose anyone know of anybody has had it done?