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Chronic headaches

(15 Posts)
ElphabaTheGreen Sun 14-Aug-16 16:03:35

I'm currently under investigation by a neurologist for chronic headaches. The most significant finding so far is severe adrenal insufficiency (cause not yet known, so am also under an endocrinologist) but the steroids I've been on for a month now don't seem to be touching the headaches or awful fatigue.

The main advice I've had so far from the neurologist pending further investigations is no caffeine in any form (not even chocolate) and no analgesia. This is fine, I completely understand the rationale, but I have a full time job, a four year old, a two year old, a disabled parent and very little family support. My boss is very supportive and aware of my health challenges, but my organisation has a crappy sickness absence policy. I cannot get out the door some days unless I have caffeine and strong analgesia on board. I try really hard to keep it to a maximum of once a week only, and only when I'm desperate and have no other option. I find managing the DCs when I have an especially bad head particularly hard, even with DH's support - when he can. He also works away a lot.

I guess my main queries to those with chronic headaches is - is there a 'bare minimum' of caffeine/analgesia I can get away with? My neurologist says it should be absolutely none but 99.9% of the time, I don't have the option of riding out a headache in a dark room for several uninterrupted hours. Did a complete omission of caffeine/analgesia help your headaches, and if so, how long did it take?

I'm filling out a headache diary but I'm fed up of feeling guilty on the rare occasion I note down having 'broken the rules'. I take co-proximal for pain-relief (it's non-opioid).

Thanks in advance smile

ElphabaTheGreen Mon 15-Aug-16 16:33:51

Hopeful bump?

princessmombi Mon 15-Aug-16 16:38:23

I don't know the answer I'm just wading in with support because I also have chronic headaches. I was prescribed a low dose of amitriptyline which is really helping. I cut out caffeine plus cheese and chocolate it made no difference except that coffee on an empty stomach was a bit of a trigger. In the same way it could soothe a banging head. With my headache diary the biggest trigger now is driving long distances.

ElphabaTheGreen Mon 15-Aug-16 17:54:50

Yes - I was on amytriptaline for a couple of years for a separate problem and I recall it being quite a headache-free time. Unfortunately, an incidental finding during a pap smear also revealed it was giving me atrial fibrillation, so it's a no-go now, unfortunately.

Long journeys are a killer for me, but coffee only triggers if I have it more than three days in a row then don't have it, so I'm putting that down to caffeine withdrawal. If I just have it every day I'm fine and there's no difference in the headaches than when I'm off it AND I have a bit more energy, albeit artificially induced.

I'm sick of being in pain and living like a fecking Spartan without any pick-me-ups. sad

LivingInMidnight Tue 16-Aug-16 20:43:43

I've had chronic headaches for 13 years, although mine supposed to be due to TMJ (my neurologist likes to do MRIs though just to make sure confused ). I do whatever it takes to make it through the work day! I'm supposed to have cut out caffeine, but I've worked out how much I can have by trial and error. I'm a zombie without any.

The only problem is I think the neurologist is trying to rule out caffeine and analgesics as the cause, so that's why they're basically torturing you. Have they at least given you an end date? I've had a quick Google and it says a minimum of 6 to 8 weeks!

If you can't try amitriptyline, maybe you could try a different trycylic or one of the epilepsy meds like gabapentin? Obviously after this 'detox' thing.

The things you could do now (that can help me) are ice packs, hot water bottles, as much sleep as you can get (and if you have any discomfort while you're in bed try a memory foam pillow), lots of water, music, reduce stress. I carry a migrastick with me all the time and sleep with one of those forehead patches on if I need to. Foods, smells and lights all make mine worse so I try to avoid 'bad' ones. I take a stupid amount of feverfew too, maybe you could get away with that.

To be honest, every time they've done something that's made my headaches worse to the point where I was really struggling to work I've rung and said what's happened and stopped whatever it was. I'm probably not the best patient.

ElphabaTheGreen Wed 17-Aug-16 12:40:03

Thanks Living.

Yes, I think he wants me off them completely for 6-8 weeks but it's just not possible unless he also provides a 24 hour nanny, a housekeeper, a cook and a full time wage!

I have already tried a number of medications (propranolol, trimethoprim, and another one I forget the name of). I think Carbamazapene is the next step, but I can't say taking a daily anti-epileptic appeals. Triptans have never done a thing for me. Botox has also been mentioned, but I've had a nerve block and that was bloody awful.

ElphabaTheGreen Wed 17-Aug-16 12:41:48

And, yes, I'm the same - everything they've tried for my headaches has made things so much worse than just downing a couple of pain killers with a double-shot espresso.

MilkshakeAddict Wed 17-Aug-16 12:49:51

Have you tried having some regular massages? I suffered from chronic headaches caused by several different medical conditions and the massages really did help - because I was in pain I was inadvertently scrunching up muscles and hunching my shoulders which made them tight and sore, which in turn led to more headaches and they were more severe.

As well as amitriptyline/nortriptyline and cocodamol and various NSAIDs, I was also prescribed a beta blocker for headaches but regular neck/back/shoulder massages really did help me more than the painkillers.

princessmombi Wed 17-Aug-16 16:27:29

Living that's v interesting as I also have a tmj which has recently flared.

LivingInMidnight Wed 17-Aug-16 17:02:59

princess it's horrible isn't it?

elphaba I've had Botox! It was brilliant! It only hurt for a little while (couple of days I think). They won't let me use it anymore, unfortunately, due to another condition I have. Not being able to move parts of your face is a bit odd but I would do it again in a heartbeat! It lasted for around 3 months.

ElphabaTheGreen Wed 17-Aug-16 17:21:56

Oh OK. That's promising. Have you had a nerve block as well? That was shit, quite frankly, so I was thinking Botox might be comparable. <insert gags about it doing nothing for your crow's feet>

Yes, I've tried massage. My first port of call when these got really bad was to go to a physio for several weekly sessions of deep tissue massage, postural work, trigger point releases and acupuncture. I sometimes had very brief relief immediately after, sometimes it made the headache significantly worse, but nothing lasting. I go for the odd head and neck massage as well, but while it's nice at the time, there's no carry over unfortunately.

Girliefriendlikesflowers Wed 17-Aug-16 17:37:10

Hi just popping on for support.

I get really bad headaches which I take to be hormonal as they are worse around the time of my period, if I don't take any painkillers they escalate to a migraine so I tend to knock back some cocodomol sooner rather than later these days. Tiger balm is also sometimes useful rubbed on my temples, if the headache is very mild I might only need to do that and have a cup of tea!

I think its all well and good for your consultant to say no pain killers or caffeine but what other option is he giving you?! Like you I have to function (working single parent) so giving up pain killers or caffeine would not be an option!

sadie9 Wed 17-Aug-16 17:41:27

A family member had chronic headaches for several years. To the point of having to leave work once a week and go home. He was waiting for an MRI appt and GP asked him to give up caffeine for at least 6wks. After 6 weeks, no headaches. Completely gone. So yes caffeine can have that effect.
Withdrawals will give you headaches too, however once you withdraw you won't want the caffeine anymore. And you have to give it the full 6 weeks as you will still get headaches in the 6 weeks.

ElphabaTheGreen Wed 17-Aug-16 18:08:47

I have managed to give up caffeine for way more than six weeks - I find that more dispensable than pain relief - and it did nothing for the headaches. I was off it for almost three years when pregnant and breastfeeding - still had headaches, although hadn't started seeing a neurologist at the time as I wanted to lose the child-induced sleep deprivation first!

The reasons I went back on it is 1) I needed the bloody energy! and 2) It really increases the effectiveness of the painkillers which 3) Helps me to enjoy, not just barely tolerate, spending time with my children or earn money.

To reiterate, though, I never have either more than once a week, usually much less frequently, so I do wonder how so comparatively little could still be contributing to caffeine- or analgesia-induced headaches.

LivingInMidnight Wed 17-Aug-16 20:14:45

Haven't tried nerve block, it sounds horrible to be honest. They sort of sprung the Botox on me, I thought it was a normal appointment only to find them there with needles. It worked out ok because I was on the verge of saying I didn't want it!

I don't think I could cope with 6-8 weeks of this to be honest. It's a struggle with pain killers (I have naproxen, amitriptyline and 30/500 cocodamol but try not to take the cocodamol). I don't think your doctor appreciates that you still have to try and get through a normal day. I'm so grateful they didn't try this with me.

If you already gave up caffeine for well over 6-8 weeks with no change I would be tempted to just say you've already done it & it didn't work tbh. Does it really need to be concurrent with the analgesia detox?

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