20 years of headaches

[FlorallyBankrupt]

I've had chronic headaches since 2001. At first they were incredibly debilitating, sending me to my bed in a darkened room for hours at a time unable to do anything much. At one stage I was getting them about 4 days out of every 7, and it was affecting work.

It was diagnosed first as chronic tension headache syndrome, then chronic migraine, then a mixture of the two. They did eventually get under control with a mixture of tricyclic anti-depressants and beta blockers; I have sumatriptan as well, which works about 50% of the time. For the last 10 years I've only had the occasional really bad one, maybe one very 6-8 weeks, and I avoid chocolate products high in cocoa.

In the last 4 months, however, they've ramped up again. I'm back to 2 or 3 a week, I'm dropping hours at work (I WFH full time) and when I went on my first appointment in person in 18 months recently, I developed one within the first hour and couldn't concentrate or speak properly.

I spoke to my (new) GP this week and he suggested increasing my tricyclic meds for 4 weeks - I'm only on day four of increasing by half a dose, and now I just have burning diarrhoea AND a headache every day.

I've no idea why I've suddenly lost control of them and why nothing is working any more, and I'm not convinced by the GPs latest approach although I know I haven't given it long enough. I'm just really fed up, I start an exciting new job in 6 weeks but I'm not working effectively at all.

I'm just venting really, not sure what to do next. I could see a private GP I suppose.

Wow lots of replies there, thanks for those.

Funnily enough Pellegrino I DO have bruxism, I had a michigan splint made for me many moons ago. But unfortunately it didn't do much other than protect my teeth, it was supposed to discourage the grinding. The osteopath seemed to think my pain was coming from my neck/occipitals though.

"My Neurologist" lol - never been offered one Mick! But now I have some spare pennies (and insurance) I might get myself one, see if they can't sort out my drug regime. I'm sorry you have so many, that sounds very hard to deal with.

Candestartan noted Denby, thanks. And thanks for the link to the film Kralia, will have a look at that.

No alcohol at all Atrocious, haven't had a drink since long before the headaches started!

SpacePotato, I'd dearly live to be a runner but exer ise certainly induces headaches - never been able to exer ise before work or anything, too risky. I do walk my dog a few miles a day, although I have to do it across several shorter stints which he doesn't seem to mind. I can generally limp a mile around the block with a headache (I'll either pay for it, or it'll make it go away), but if I can't DH will take over.

New job 100% desk based and utterly terrifying - I'm excited but it is going into areas I've never dealt with before at a high level, so one is shitting oneself at the same time. Will look up some pilates stretches.

Oh I do drink water, just not in the wild quantities people seem to believe is mandatory these days. I was born in the 70's and you never used to see kids surgically attached to drink bottles and adults gulping from the tap every few seconds. A few glasses is ideal, more if you're exercising hard, but I can't ascribe to the 4 litres a day brigade. I only referenced the tea and Pepsi in terms of caffeine intake!

Always been fascinated by the botox nerve blocks SapatSea, I think I'm going to push for a referral and lean on my insurance. I wonder if my policy permits referrals from private GPs...hmm, probably not. That means speaking to "I'm a male doctor" again.

I don't really know if I'm in full menopause or not, but my symptoms - irritability/mood swings, mild incontinence, pain with intercourse, hot flushes etc - were enough to get me onto the Estrogel. I have a mirena coil and haven't had periods for 11 years, so nobody knows. Bloods inconclusive, but Estrogel made a big difference to me.

Sometimes with a headache I get flushing on one side of my face?

@FlorallyBankrupt Your gp is doing you a huge disservice if they haven't referred you on to a neurologist, they will help you so much more.

I'm with you on the exercise thing, people recommend running but often a walk floors me!

Interesting that you get flushing on one side of face - have you heard of Hemicrania Continua? If not please look it up, it may be you.

I've had occipital nerve blocks, worked for me initially then stoppped (as with everything!) Really you should get these on the NHS if neurologist considers your condition far gone enough.

I had to stop work a long time ago sadly, just not well enough anymore. Sad as I used to love my job! (And, y'know, having money 😂)

If you're fully desk based in a new stressful job the position you are in and the extra tension in your neck and head could be kicking it off.

Make sure you have a blue light filter on any screens and turn brightness down.

Sounds daft but even trying to read things printed on bright white paper under fluorescent lighting can kick mine off. Wish more places would use pale coloured printer paper instead of white!

With the exercise, I wasn't really referring to anything high impact. Running is practically begging for a headache but gentle non impact like pilates and yoga definitely helps me by releasing a lot of tension and stiff muscles that store stress and knots and improving posture. Especially good as you are sat at a desk all day.

It took 40 years and many GP's to get referred to neurology.
To be fair, I had never asked but when she suggested it, I didn't say no!!
He was great, very thorough and interested in my history. Having had them since 9 years of age, I seem to have gone through cycles where they infrequent, then horribly frequent. The only time I was free of them was when pregnant.
Propranolol and Sumatriptan worked for a good 10 years, before they came back with a vengeance.
The frovatriptan is for menopausal migraines and as I say, does the trick.
He also prescribed Sumatriptan as a nasal spray, which works quicker and is a lower than taking it orally. I could have had it as injectable but I am holding off on that until absolutely necessary.

Lower dose.

I can’t recommend the National Migraine Centre enough. I saw neurologists and headache specialists for years but none of them sorted me like the doctors there have. It does cost but as it’s a charity you just pay what you can afford.

I had 2 telephone appointments. She recommended a HRT regime for me and sorted the meds out that the GP and my pain specialist had me on. I feel better than I’ve felt in years. I was getting 15 or so migraines a month now I get 4 maximum in a bad month and I rarely get a headache or fuzzy feeling in my head.

The symptoms of Hemicrania Continua are incredibly close @MickShipman! Possibly not 100% of the time though - I do get one red/watery eye or a stuffy nose, flushing on one side, pain on one side of the head (which side varies). But I am lucky enough to have pain free days, sometimes quite a lot of pain free days, so I don't think I meet the criteria for a diagnosis.

Yesterday was utter shit, I woke up with the neck and scalp throbbing and of course nothing made any difference. By the afternoon the pain had eased up but I had that awful deep, numbing misery/melancholy and thought-nausea (is that a thing?) that only a migraine gives you. The thought of engaging with anyone, holding a conversation or thinking about a chore or task made me want to throw up and I even worried about how long I'll be able to keep my job before anyone realises my brain is fading away. I stuck Greys Anatomy on and went to sleep!

Thank goodness I feel a lot brighter this morning, only the 2/10 ghost of a headache which is probably just tension.

Thanks so much for all the neurologist-linked advice. I'd always assumed I didn't get a referral because the tricyclics and beta blockers kept things under control OK, for the most part anyway - I had to ask for sumatriptan, and they simply wrote a prescription without much preamble. Good tips on the triptans @NiceTwin, I forgot there was a nasal spray. I like the idea that there is one that helps menopausal migraines - I wonder if hormones are the culprit, as things have been fairly well controlled until recently.

Yoga and Pilates is a good shout @SpacePotato, I just need to develop the right habits and DO it!

I'd not heard anything about the National Migraine Centre @TheFairyCaravan, thank you for that - off for a Google!

I tried acupuncture and osteopathy without any joy either, but I have finally found a bit of improvement with a combination of weekly shiatsu (Japanese acupressure- incredibly gentle as anything intense sets me off) and then daily stretching (super-gentle, super-slow ) of neck, back and shoulders. I hope you find something to give you relief OP, it's such an awful thing to try to manage.

Have you seen a neurologist (even privately) or gone to the National Migraine Centre?

I was having migraine >16 days a month. Massively improved by cutting down on triptans, monitoring triggers (desk assessment, blue light, limited alcohol, no late nights, not being hungry, no fragrance etc etc) and and having an effective preventer after seeing a specialist neurologist privately but I was still having loads of sick days at work.

My life has been changed by Botox. Sometimes I can feel myself attempting to have a migraine and it just withers away! It's unbelievable.

Still having a few but I now know I can try the CGRP injections in the future.

Specialist advice is the way forward but you may have to find/fund it yourself as waiting lists are enormous. I had an NHS referral and just got a letter back with some self-help advice I was on my knees at the time and had to do something so I paid for a specialist as I just couldn't go on the way I was.

Never seen a neurologist but I have just applied to the National Migraine Centre for a consultation, and I've downloaded the monthly diary to start today.

I certainly don't mind paying - fascinated by the occipital nerve blocking, I can imagine that really helping.

I only have a faint fuzzy head and light pain today and that's as good as pain free, so it's hard to think of it as seriously debilitating when I'm not mid-attack. But I hate getting it on work days, I'm losing hours.

My Botox was like a miracle. I got a migraine yesterday after accidentally being exposed to a trigger - and managed to resolve it in 20 minutes by putting a bottle of cold water at the back of my head. No meds, no lying down all day, and no migraine today - which previously would have been an absolute guarantee.

And the days of fuzzy head feelings are gone.

The difference in advice from seeing a neurologist who specialised in headache to my GP (who is brilliant BTW) was amazing. Just feeling heard and understood was worth the price alone.

I was missing loads of work - contributed to me losing one job and now I'm self-employed every day I have off I don't get paid so it was a no brainer to pay for treatment in the end.

Best of luck

I actually feel heard and listened to simply by posting @AnnaMagnani, I'm glad I did - I don't think I have before.

I joined a migraine Facebook group but there were so many people suffering so much more than me, I felt a bit of a fraud, even though it was a great group when the pain was getting me down. On my pain-free days I felt guilty about everyone else suffering, so I left in the end!

I was under several neurologists for years and given all the usual Triptans, betablockers, preventatives, alternative therapies including Bowen & acupuncture.

As a final ‘we’ve got nowt to lose’ I was given Topiramate and they’ve been an absolute life-changer.

One in the morning, one in the evening and I’ve never looked back. Even had to surrender my driving license at one point due to blacking out but now in that respect, my headpain is no more

That's interesting @BelterDelta - after an absolute killer of an attack on Monday, I called the surgery in desperation to offer to pay for a private referral letter so I can use my health insurance to see a specialist.

A GP called me later that day and asked if I'd ever been offered < name of drug I've never heard of > or Topiramate. Or whether I'd considered botox.

I said I was under the impression that they were "not typically prescribed" until you were bleeding for the eyes or half dead (i.e you have to meet strict criteria), hence I wanted a specialist, and he said not necessarily - he was happy to write me a letter, but as any specialist was likely to ask me to keep a headache diary for a month anyway, would I be happy to start a diary and call him back in 14 days? He'll do the referral but if the diary supports it he can prescribe Topiramate or the other thing anyway.

I thought he was incredibly helpful, and funnily enough now I feel supported by my Dr I've had 2 completely headache free days!

I'll do the diary and see what happens. I love that one of the side effects of Topiramate is weight loss, not so keen on the brain fog, word blindness and depression though! I loathe the dreadful sensation of melancholy you get with certain migraines - reminds me of how Ron Weasley said he felt in the presence of a Dementor, like he'd never be happy again. Yes, I think I'll name them Dementor Migraines.

I used to suffer crippling migraines op, as did my mother.
I have a feverfew plant in my garden and each morning I used to pick a couple of leaves off, rinse them and eat them between a little bread and butter. It stopped my migraines.
My mother does the same and it stopped hers.
Maybe this is something that you could try?
Feverfew is brilliant for headache and migraine relief.

I excitedly looked up feverfew, but it seems to have contraindications with all my other medications as it is metabolised by the liver. I'd like to give it a try, but I wish I'd thought to mention it to my doctor when I spoke to him.

I suppose I could check with a pharmacist. I very much doubt an average dose of feverfew is going to cause a problem but I don't like to bugger around with my liver, it's under enough strain with my weight!

You say that you can’t do chocolate. That’s a solid amine problem and a common trigger for migraines.

www.fedup.com.au/factsheets/support-factsheets/introduction-to-food-intolerance

fedup.com.au/factsheets/additive-and-natural-chemical-factsheets/amines

fedup.com.au/factsheets/symptom-factsheets/headaches-and-migraines

Also, DM would track the weather with her head. Lots of air pressure changes/cloudy days would be awful for her.

Thanks @TheSandgroper, that's really helpful! Will have a read.

It seems to be anything with a high level of cocoa (I think), so anything like chocolate brownie, chocolate cake, hot chocolate powder etc. I can get away with cheapo supermarket milk chocolate if I only eat a small amount - a massive binge would set it off.

But by far the worst trigger is exercise. A short walk where I don't overly exert myself or don't do more than 20 mins is fine. A strong walk uphill, or for over an hour, will trigger a headache (45 mins with the dog this morning, up a slight incline then back down - I now have a dull ache on the right side of my head, behind my eye and nose, but very mild).

Over the years I've tried swimming, running, cycling - culminated in headache about 80% of the time. DH can reel off all the times I've been incapacitated after doing something interesting, once it was kayaking!

Please speak to your GP regarding feverfew. I would be so happy for you if you can have it and it sets you and any other sufferers free of such debilitating pain.

Hi @FlorallyBankrupt you sound similar to me I've had a lifetime of pretty constant headaches interspersed with migraines. I've tried lots of different migraine preventatives inc clonidine and propranolol but they didn't help. I also find Sumatriotan can help if taken early enough.
20 months ago I started to get different headaches which I thought were tension headaches as they started at the back of my neck / base of head, like a tight band. Within 7/8 weeks the pain had affected my shoulders and upper back too. ( I already have OA and lower back pain so this was probably over compensation )
GP referred me for physio but COVID put paid to that.
Meanwhile I can't think or concentrate, brain fog and constant pain. Also affecting my vision. I'm dragging myself through each day.
GP also referred me for a sleep study ( still to happen ) also a head MRI and changed my HRT, so far nothing has worked.
I went to my dentist 2 weeks ago who told me it was probably due to teeth grinding at night and jaw clenching. Said I could try a bite guard first and mentioned that it was also possible to have BOTOX into your jaw to help too.
However NHS don't routinely offer this.
She told me to make an appointment for the bite guard but the first available one was October!
So last Sunday I went to a private practitioner and had Botox into my masséter muscle. It takes around 7-10 days to take effect and I'm really really hoping it works.
It was £140 which I can't really afford but have paid as if it works it'll be worth it.
Sorry for the long response but I honestly know what it's like and how desperate for help you become.

I was massively disappointed not to get the weight loss side effect from topiramate so don't get your hopes up.

It isn't a last ditch, specialist only thing. It did work for me although I did get some side effects. It just didn't work enough and I didn't want to go on a bigger dose.

Botox however has been nothing short of a miracle. I had both teeth grinding and migraine areas done - I have had migraines since and they have either resolved quickly or gone with one triptan rather than being a 3 day monster event.

The best thing for me is that hunger was a major trigger and I felt I was ending up a fat lump as I was eating my way out of migraines. My food intake I think has halved as a result of the Botox. And I've been able to go out for a drink, which I couldn't do before either!

I used to have terrible migraines and had been to see a neurologist.
To cut a long story short I discovered that the trigger was aspartame which is in loads of stuff.
I now rarely have a headache.
Hope this helps.

My mum suffered with terrible headaches just as you describe. She tried everything, had scans, tests etc. She has been prescribed Candestartan and it's literally changed her life. Also injections of B12 helped for a bit.