To think headaches every day can't be normal?!

[jinglebellmel]

I've been having headaches/eye pain and a twitching eyelid pretty much every day now since January (I had a week in late Feb early March where I was blissfully headache free but sadly it didn't last!) and as much as I try not to worry I can't help it- I'm getting really anxious that it is a brain tumor. It can't be normal to have headaches everyday surely?!

I've been having muscle twitches all over and occasional pins and needles, but I think these might be due to the fact that I've got myself so worked up about it all. I had a cold a week or so ago, so trying to convince myself this last lot of headaches could be sinus related but I can't shake the feeling that its something more. They're there when I wake and worse when i lean forward, today I'm feeling dizzy too.

I was referred to a neurologist a month ago but no appointment date yet. Has anyone else suffered with headaches every day and lived to tell the tale??

I also avoid perfume and perfume shops as the scents can kick off a headache aswell!

Auramigraine I drink diet drinks (have gone to caffeine free but still lots of sweeteners) so maybe worth cutting those out. I always have done though so I'm not sure why they'd suddenly have started causing headaches though? willing to try anything though to be honest!

If I were you I would keep a diary of symptoms, blood pressure and pulse (from a pulse oximeter not from bp machine). I would take measures on waking up (before getting up), note whether the headache is there. Try to describe what it feels like and make a note of general position (vice on the temples or pressure pushing down from above type thing). Keep a food diary alongside too to begin to rule out triggers. I would note the same maybe 4 times a day, morning, lunch, dinner and bed.

Some questions to think of (and things you should make your doctor aware of).

Does the headache change at all? Does it move area or change sensation?

Do painkillers help? How soon do they work and how soon do you take a second dose? (In fact do you take painkillers before it gets bad or wait for it to get bad?)

Do you have a family history of issues with the head/brain/spine in particular? Have you ever had an accident or surgery to these areas?

Do you have any other symptoms that you perhaps haven't considered? (Ringing in the ear, confusion, increased clumsiness etc). Do you get unusually breathless? Do you find yourself going red if angry/upset?

Try and keep as detailed a diary as possible. That's how you will hopefully get a diagnosis and help stop doctors going down a blind alley. For example my BP tracks low, I'm not quite at the point of having hypotension by the textbook figures but am so close that often doctors etc go into what I can only call panic mode when they see me. It helps being able to show a record to them from when I'm fit and healthy that my BP is where it should be! :)

If you do develop new symptoms or begin to see a pattern (like high blood pressure for example) don't be afraid to go back to your GP. Too many people don't bother to let their GP know their new symptoms while waiting for a clinic appointment but it can be important, and in some cases will help you move up the list faster to be seen by the speciality team.

Yes, avoid the sweeteners in that case.

Have you been considered for migraine?

What other symptoms do you get? Any nausea or vomiting? Does light or noise make it worse? Moving about?

I had headaches from when I started my periods, until I had a hysterectomy, apart from during my four pregnancies.

As soon as my hormones levelled on HRT they stopped. Not had any since apart from self inflicted ones.

It’s trial and error but anything is worth a try!! The first few days I stopped having Coca Cola for example I had the worst headaches (didn’t realise they were caffeine withdrawal headaches) then I noticed I would get a headache after flavoured water, took a long time to identify but sorbitol seems to be a bad one for me..... maybe go a week without them and see how you are x

When my mum had a brain tumour it began to affect her movement - struggled with lifting her arms etc.
It also started as a bad headache that improved over the course of the day. And got worse again each morning. That's just one persons experience.

I know 3 people who have all had benign tumours and removed.

I was having headaches very regularly - not every day but often for several days in a row, going to bed and waking up with the same headache. For an unrelated reason I found I had very low ferritin levels and within a few days of taking an iron supplement have been more or less headache-free. It's now several weeks in and I've had a single headache in that time, which felt a bit different to my usual regular ones in any case. I've since googled and headaches are a potential symptom of low ferritin so worth getting tested.

By the way, my headaches felt like they were behind my eyes which could tally with your eye pain?

I absolutely don’t want to scare you - and this might be way off the mark. My father had headaches daily - he always just took painkillers and got on with it - until one day he fainted, turns out he had a tumour in his pituitary gland that was the cause. I would see someone about it soon. Sorry - I really don’t mean to scare you.

Thanks all, lots to consider. I don’t feel that they are migraines - they’re sometimes on both sides and don’t seem bad enough. I had considered sinus as they are sometimes in the face and sometimes the area over my eyebrows is tender to touch. Other symptoms have been pins and needles (but haven’t had this in about a month) eyelid twitching, muscle twitches (these have eased the last couple of weeks and could possibly be due to worrying about a brain tumour as I notice they are worse with stress). Today I’ve felt dizzy and a bit sick.

To those of you mentioning brain tumours, don’t apologise. It does worry me a little but it was my main concern anyway, so good to hear your thoughts.

I’ve been keeping a general note of symptoms but nothing detailed so I’ll start a headache diary in the hope it helps if I ever get an appointment with the neurologist! I’ve made another gp appointment but the earliest one is 4 weeks away so I guess I’ll just see how things progress.

Madam Buxton I’ll give iton a go thanks

If you are taking more painkillers then you likely have medication overuse headache.

I had this - treatment was no painkillers at all for 6 weeks, it nearly broke me but headaches did get a lot better.

My underlying diagnosis is migraine but even for that, you can only take so many painkillers per week and per month or you risk triggering overuse headache.

I have TMJ which causes constant headaches. I always get pain in my temples too.

Wow, so I just phoned to check on the waiting time for my neurology appointment. I’m down as urgent so should be seen within 22 weeks!!! thank god ive booked the private appointment which is in 8 weeks. But what about people who can’t afford to do that?!

I don't know if it's normal op but I get headaches most days, I've got one now.

I maybe get one week per month free from headaches.

My prescription for my glasses is up to date so I really don't know the cause.

My guess is that it could be painkiller overuse, poor diet, caffeine, screen use, hormonal, stress.

Thanks for replying sky patrol. I can put up with the headaches if I know they’re nothing to worry about. It’s just the stress of thinking there must be something wrong all the time.

To be honest nobody can give you an answer on here. For some headaches will just be a fact of life, for others they might be life-changing/ending.

Someone I know had headaches and collapsed before she could see the neurologist. She had a brain tumour and died just after Christmas. But of course it doesn’t mean that your headaches are that, but they could be, just as they could be something completely benign.

Definitely keep an eye on your lifestyle, how much do you drink/how much sugar do you eat/are there any stresses/have you changed anything in your diet/lifestyle over the past few months.

DH was getting a lot of morning headaches a couple of years ago. Being a man, he of course did nothing about it.

Then, we were having our woodburner replaced sndvthevgitter discovered a leak in the chimney where it passes through our bedroom only a meter or so away from his head. Since getting that replaced he's been headache free.

Could yours be Carbon Monoxide poisoning?

Have you not had an MRI or CT before your referral? Seems odd. The referral protocol for our NHS Trust requires a long list of tests before you see the Consultant so they have the results to review as part of the process. You can look that up online.

I looked into a private appointment, that's only 2 day's wait here but I couldn't afford it. As it happens, I've got a cancellation appointment on the NHS tomorrow afternoon, yay! That's been a 4 month wait.

GreenShadow I don’t think so as we have a carbon monoxide alarm, but i’ll Check it’s wirking okay. Thank you

GetOffTheRoof, I’ve had blood tests but that’s it. Does seem stupid as presumably if I need an mri I’ll have to wait again for that and then again to see a neurologist for the results. Good luck for your appointment tomorrow, do you mind me asking what your referral was for?

I had this. Turned out it was my pillow causing neck strain!

Referral is because my migraines are out of control and I've exhausted all prescribing options open to the GP. I've been on almost all the preventatives and have burned my way through most of the triptans (used instead of painkillers to treat the migraine). At my worst I was having approx 20 migraines a month.

Add to that, my migraine types changed and I've been getting stroke symptoms which are taking days to resolve (speech affected, loss of vocabulary, loss of sensation of touch in my face, loss of thought processing - I know I should be asking for help for example but instead I go to sleep in a silly position) and it's all getting deeply unfunny and hugely affecting my quality of life, my work and even my marriage as DH struggles seeing me in pain all the time and wants to help when I want sleep.

I'm averaging 3 migraines a week even on the top dose of topiramate, so it's not working, but the topiramate seems to be having huge side effects which I can't stand.

It's exhausting, not least of all because I only take a maximum of 6 triptans a month so I have to save them for days I have to be able to function so I only take them when I lose my sight in one eye or I have to drive etc.

The MRI was clear btw!

GetOffTheRoof That sounds absolutely awful glad the mri was clear at least, really hope you can get some help tomorrow.

TheFunkyFox I did consider this, got a funny foam type pillow but it just didn’t feel comfy so I gave up! Maybe I should give it another go.