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.

How old are you? I am wondering if it's influenced by your hormones?

My migraines all but disappeared in my early twenties and reappeared in my early 40s 😭

Ah. I'm coming up to 49 - pre-menopausal since 46, and been on HRT for 12 months!

I don't know if it might help, but I keep my son's chronic migraines under control with feverfew capsules. If I stop them, the headaches return, so they definitely help.

Oh, and another thing. My mother used to get terrible migraines, but they were kept under control with Clonidine, which she took every day.

Mine have got worse with menopause.

You say you avoid high cocoa, I do too as it's a definite trigger, do you avoid hard cheeses too as that another of mine ?

Feverfew, yes I've heard of that but never got as far as trying it, thank you. Heaven knows omega 3/vit B has helped with brain fog and biotin helped my hair grow back after covid, so it's worth a try!

Clonidine - just looked that up, it seems relevant but I see the NICE guidelines indicate that it's not commonly prescribed. I'm currently on propanalol and lofepramine. Might be worth a mention, cheers!

Cheese doesn't seem to be the same trigger for me Pellegrino - but anything like chocolate brownie, chocolate cake or hot chocolate drink etc is just asking for trouble! I seem to be alright with milk chocolate as long as I don't over do it - wouldn't risk dark chocolate.

I always get bowel effects with mine as well - definitely welcome with a banging headache is a dose of the trots. Fortunately I'm not a vomiter, although I feel horribly nauseous. When they're that bad, a cold flannel, a dark room and a gentle fan are required.

Could it be a consequence of Covid your body just isn't recovered yet?

I've suffered from chronic migraine for 15 years but since giving up caffeine they are less frequent and the episodes shorter in duration. I know everyone has different triggers but might be worth trying if you haven't already.

Coming off all hormonal meds was the only thing that helped me

Mine have got worse when I became peri menopausal, I was referred to a neurologist.
He has prescribed Frovatriptan to me taken on the onset of my period. Only been on them since March but it seems to do the trick.

I had covid 9 months ago and recovered quite well, apart from the hair thinning which I think was a result of the fever and shock to the system - I'm otherwise fine. And I've only been on HRT (oestrogen gel) for a year so I'm not sure that is wholly responsible for this sudden change, although certainly one to consider.

I'm not a great one for caffeine really - that said, I might have one cup of tea a day, and one glass of Pepsi max in an evening. About 12 years ago I gave up all caffeine and sweeteners for 5 months to see if it improved my headaches but nothing changed!

DH is always on about drinking more water, but it just means getting up to pee more while I've got a headache - sloshing down water every nanosecond doesn't decrease the frequency or intensity. I've had acupuncture and cranial osteopathy as well (that was weird).

I wonder why the medical professionals never try to establish the actual CAUSE of the symptoms. Maybe there isn't one? I've never had so much as a scan, but as one doctor helpfully put it, I've had them for so many years without dying that there's nothing sinister going on. I realise that, but I still don't want to live with it any more.

Frovatriptan, that's a new one on me - I have sumatriptan and rizatriptan in the drawer, they sort of work some of the time but cause a terrible kind of melancholy (and a choking feeling in the throat)!

I think I have a mixture of tension headaches and migraines, the triptans don't always work sadly. I have a friend that has 4 day long migraines and may take multiple triptans with no effect. Sounds horrific.

Weird that you are on an oestrogen based hrt with migraines. I've had migraines for years and I was only allowed progesterone only contraception

Have you tried acupuncture OP?

I know romdowa, it is a bit odd - but they're the doctors I guess! I actually brought it up with the GP on Monday, but he couldn't wait to get off the phone when I said the word "menopause" and blustered something like "I'm a male doctor" so I knew I was wasting my breath there.

Yep, had acupuncture for a while, and had a go with cranial osteopathy. It made no difference although I enjoyed having my swede cradled by an extremely handsome Australian gentleman.

Sorry, that was a bit sexist wasn't it.

Have just googled (Dr Google, always a shit idea) - but it says that gel based oestrogen is OK with migraines, and that's what I'm using.

I've had physio for tension headaches and it was caused by a jaw issue, really effective.

I'm the same, I can tolerate milk chocolate...thank God!

I've had 15 years of chronic migraines, get roughly 25 migraine days a month. My life oftens feels unbearable.

My neurologist is one of the best in the country and even he can't explain what causes sudden spikes or changes, OP. I sometimes find questioning it makes it worse, almost like I'm blaming myself for something beyond my control.

Has your neurologist put you forward for an Ajovy trial? If not, get them to. It's helped so many of my neuro friends, even though it hasn't helped me.

I've found (and has been confirmed by my neurologist) that often a drug combination will work and give me some relief for about 9/10 months then suddenly stop working so well. Maybe try a different cocktail?

Candestartan (prescribed by St George’s, who are apparently the local specialists) and acupuncture has had the biggest impact on my chronic migraines.

This film might be of interest - about a chronic migraine sufferer who alleviates her symptoms using cold water immersion. www.vitaminseafilm.com/

Do you drink alcohol? A friend didn’t drink much but found her migraines greatly reduced when she gave up completely.

Do you exercise at all? Is your new job screen/desk based?

Gentle stretches of neck and shoulders to relieve tension. Pilates is great.

You say you don't want to drink more water but you could swap the Pepsi max for a glass.

Does the weather affect you? Summer is always worse for my migraines.

Eye test?

If you can afford it I'd go and see a neurologist or neuro-otologist and get a proper treatment plan. (The guys at Queen's Square are good if you are near London or Dr Silver at the Walton Centre if you are up north) or find a specialist in you area and push for an NHS referral to their clinic. If you see a specialist you can get on a pathway to treatments that GP's can't prescribe if migraine meds fail e.g. occiptal nerve blocks, botox, new injectables and they will have more experience of prescribing the right med for you (or combination) and at what dosage and for how long. I actually tried the med I take now several years back but the GP started me on too high a dose so I had bad side effects. I now have some control (about 80%) by building the dose up slowly over a few months.

Chronic migraine is the pits, in general I find GP's don't seem to take on board how it impacts your life (you are either having a migraine or recovering so have a very "small life"). My specialist says the bulk of his new referrals each month are peri menopausal women.

It's interesting Clonidine has been mentioned as I've been told to add that tot he pizotifen I take, especially if Hot flushes kick in (I'm 57 and in perimenopause)

I get a lot of migraines so consulted the National Migraine Centre. One of the things the doctor I spoke to recommended was Dolovent. It contains magnesium, riboflavin and CoQ10 which she said is needed. I also, take other preventatives and have Botox but have noticed a reduction since taking the Dolovent. She recommended a pro-biotic, too, called Migrea by Bio-Kult but I already take a Pro-biotic that suits me so I’ve not changed.