Is it possible to get nearly daily, all-day long migraines?

[Kittii]

For about 6 months I've been getting visual vertigo. So I feel dizzy when looking at complicated patterns (like a mesh fence or trees moving in the wind)/in certain lights/moving my head too much. I get it nearly every day and it's horrible and scary. I saw an ENT who said it was vestibular decompensation and i had some physio and it seemed to be getting better to the extent that I didn't get any vertigo for weeks and was feeling much better.

I have also recently seen a neurologist about a separate issue (sinus nerve pain) and mentioned this to him and he diagnosed it as vestibular migraine, not vestibular decompensation. I was confused about this as I don't understand how migraines could occur daily and improve over the course of a few months. I asked him about this and he was very short with me and said "it's not migraine attacks it's migraineous symptoms". I didn't feel that I could question his diagnosis any more than that. He said it isn't so bad that it needs medicating and that he would just give me beta blockers anyway, which I'm already on.

I'm now really confused as I have started getting headaches so am wondering if this really is migraine but, if so, that would mean I'm having migraines almost all day nearly every day. Is this even possible? And if so, do I just have to live with it?

God some of these poncey consultants can be so dismissive. I bet he would not want to live with vestibular migraine - it is utterly miserable, as I should know.

Speak to GP about preventive measures - I take a small does of beta blocker and it does help.

I also do a very naughty thing which is to take a tiny dose of lorezepam (similar to valium) when I have a major attack - it sends me to sleep and when I wake it is gone. These are tabs that were prescribed for my OH who has since died.

"it's not migraine attacks it's migrainous symptoms" is a totally fatuous statement that begs several questions: why are you getting these symptoms?; what can be done about them?

Frankly his attitude is negligent.

I had severe head pains on one side for days. It turned out to be shingles. i would see your GP.

The thing is, it's pretty much every day. I was just wondering if it's possible to get daily/constant migraine or if I ignore the neurologist and believe the ENT consultant. Nothing I've read online suggests that migraines can give you constant symptoms.

Mine tend to come in spates and will last several weeks.

Yeah totally possible. I have some migraine symptoms constantly despite several treatments. Mine started as a vestibular disorder that morphed into migraine.

I get one or two migraines a year but recently had a week where I had one every single day. Migraine threads here have indicated they can be frequent. There have been some threads recently which will be of interest to you I think if you do a search. Since May. So sorry op.

It didn’t happen to start after getting covid or your covid vaccine did it? There are people who have had these vestibular systems like daily dizziness and migraines after covid / covid vaccine although generally they have improved massively by six months post.

Yes, my brother has chronic migraines, roughly 26 migraines days out of every month. Started as yours did with vestibular symptoms around 20 years ago.

He's tried every medication under the sun, some have lessened symptoms slightly but it's just his life now. He's never been able to accept it, his life is nothing like he dreamed but we're all on hand to support him.

I get vestibular migraines sometimes and after an attack I can be left with some low level dizziness when moving head for a few months. If it went away for a period and came back you could just be onto a new migraine attack. I would also suggest you could try cutting high histamine foods from your diet for a while and see as that helps as sometimes they trigger dizziness for me, especially sea food.

Yes it’s possible. I had a continuous migraine from Monday to Wednesday earlier this week. I think it may be being caused by pressure on the nerves in my neck and upper shoulders. I’m seeing an osteopath tomorrow.

I’m actually really reluctant to speak to a consultant now because the last time I did, he couldn’t find a specific cause for my symptoms and he took exception to my genuinely very polite enquiry about what next steps I could take to try and get it resolved. He wrote a comment on my notes to the effect that he couldn’t see anything wrong with me and I was an hysterical woman making a fuss about nothing. Not in those exact words obviously, but the meaning is clear. And the worst thing is, that note follows me round so that any time I see any medical professional now, I get a sort of ‘knowing’ smile. I feel so judged.

You most definitely can get headaches/migraines every day. I have had a constand headache for the last 16 years and I actually do not remember what it is like to not have a headache. The severity varies with some days being my 'background headache' and others being so bad that I can't get out of bad.

I have been on every medication imaginable including nerve block injections and botox which did not help. I am now on monoclonal antibodies injections (Ajovy) and so far it has been helping in that it is reducing my number of bad headaches.

I also see an osteopath who specialises in headaches and that really helps.

Unfortunately, most people with headaches/migraines never find out the reason behind them. They just (hopefully) find the treatment that works for them. My ones are particularly resistant to treatment unfortunately which is unusual.

Yes it is

BUT… it was down to a huge, undiagnosed brain tumour. I had a few diagnoses but not commonly thought of symptoms and was still working in a high pressured job until a week before an MRI.

HOWEVER this is rare - I’m not even suggesting this in your situation. What I am saying is if you aren’t happy with their diagnoses or explanations, keep pushing. Go back to your dr. Chase their secretaries.

Hi OP. My DH has a long history of a neurological disorder with vertigo and an array of weird and not wonderful symptoms (without headache though). He has seen many neurologists over the years and was misdiagnosed with 'unusual' migraines for a long time. Finally, well over a decade later he has a diagnosis which makes much more sense and is finally getting treatment which is helping him.

I have posted on other threads like this (though I'm a serial name changer!) but as well as seeking a referral from your GP I would really recommend a place called the national migraine centre: www.nationalmigrainecentre.org.uk. They are a charity, so although there's a fee, it's a donation not a requirement. My DH was a student when he saw them, years ago, and wasn't charged a penny. They really know everything there is to know about migraines and headaches, particularly when they are slightly unusual in nature. They are great at pointing you in the right direction for onward referrals . In my DH's case they told him he categorically did not have migraines (totally right) and referred him to a neuro otologist for further tests. It has still been a long path since, but if he hadn't have seen them it would have been much worse.

I am basing this on experience many years ago, but thought it was worth mentioning here as it may be worth doing this alongside seeking a regular referral as in our area new neurology referrals take about 10 months to yield a rushed 10 minute appointment (and that was pre covid...). And then often you end up seeing one with the wrong speciality and then wait another 4 months to see a different one.

Sorry you're suffering so badly at the moment

Thank you everyone. Sorry it has taken me so long to reply.

No it didn't start after covid jab but did start when I was going through a really stressful time and I think it is linked. Once the ENT said it was decompensation I felt like I had some hope it would get better and it did, especially after physio.

Now after seeing the neurologist it has got worse, maybe it was the worry of thinking that if it is migraines then it will never go away!

I've had a head and neck MRI so thankfully so tumours. I've also seen an osteopath who said I have some muscle tightness and I also clench my jaw so that might not be helping. I'm finding I now feel like all the muscles on the right side of my head/face are tight and they're sore to touch. Self-massage helps but only a bit.

@Soveryhungry what was your DH's diagnosis?

I feel like I need daily massage and relaxation treatments just to be able to function normally and that's not going to happen!

I am on these tablets (half beta-prograne 80mg) to prevent migraines, only on it for a week and have had insomnia since. I am tired of migraines

If you've found that self massage helps a bit you could consider finding a sports/deep tissue massage therapist to work on your upper back/neck/shoulders. I go to one every two weeks and it helps me enormously.

I had Idiopathic Intracranial Hypertension which might be worth you googling.

Prolonged Hormone Induced Migraine here, had to resign from work longterm, vomited if I even tried to sit up for 3 mths, couldn’t look at daylight or screens for 5 mths & lost 7 stone over 14 years.

Like others, MRIs & beta blockers failed, I even injected DalteParin Sodium (blood thinner) because they wondered if I had a blood clot on my brain.

I’m now on Topiramate and am more or less pain-free most of the time - it’s been a total gamechanger.