GP appointment cancelled, looking for any advice

[Moaningturtle]

I’ve just had a long awaited GP appointment cancelled and I am beside myself with what to do. I’ll copy the notes I had in my phone for the doctor below.

If anyone has any advice or ideas or anything at all I can get over the counter that I haven’t tried please please share!

“Headaches started about 3 years ago and have gotten worse in the last year. Approximately every 3 weeks.

Saw dr before (May 2021) who said it could be tension headaches and prescribed naproxen. Since then it’s got worse with extreme spells.

Headache comes on over a few hours, starts as bad throbbing pain behind left eye and will either continue like that for about 3 days or will get very bad after about 5 hours to the point of not being able to move or do anything and I vomit and sleep and then it’s gone within a few hours.

Nothing helps, tried paracetamol, aspirin, ibuprofen, migraleave, co-codomamol, and naproxen. In hospital the codeine helped, but it was also one of the shorter headaches so may have been easing anyway.

Once I get the first pains nothing I do seems to help.

Recently there seems to be daily shooting pain’s across the front of my head, like lightning.

Worried about work as work nights in care with only one other person, if it happens there I don’t know what would happen.”

I hope that all makes sense. To elaborate on the hospital part - at the beginning of November I had such bad pain in my head that I was repeatedly vomiting and crying in pain, called 111 for out of hours appointment for stronger pain relief and they sent me to A&E. Had a CT scan and blood tests which were clear and the Drs there said probably migraines but didn’t prescribe anything and told me to go to GP. First appointment I could get was today and that’s been cancelled last minute.

Google cluster headaches.

Co codamol can actually make migraines worse/more frequent according to my neurologist.

Is your sight test up to date?

Can you do an E consult for your surgery, they may be able to prescribe /refer that way. That’s how I got my neurology referral and my diagnosis of cluster headaches. I hope you get some effective treatment soon.

econsult.net/nhs-patients

Have you tried any triptans? Migraines can present in a lot of ways

Have you tried triptans? Nothing worked for me until I tried sumatriptan

You can actually buy 2 from behind the counter of boots / other pharmacies, you just need to complete a form and say you’ve had it before

Sounds like migraines to me. I take sumatriptan too. They're my magic pills. My life would be bleak without them.

I was going to say cluster headaches too.

Propanalol is prescribed to my DP for hers.

Can you afford to pay for a private GP - they are about £50 and can prescribe something to tide you over. Don’t know if this is an option for you.

Sounds awful OP, wishing you all the best c

Thank you all.

@BeLessMe I had an eye test right after the hospital incident as the pain feels so much like it’s right behind my eye. I paid for a full scan of both eyes and all was normal. I do have a distance vision glasses prescription but nothing strong and nothing had changed.
I have looked at cluster headaches and do suspect that it’s possible but my symptoms don’t quite fit to the NHS description, although I suppose everyone is different. What treatment have you managed to get for your cluster headaches and how are you now?

I didn’t know you could get triptans OTC, definitely worth a trip to the pharmacy then. Thank you for that. Last time I spoke to the pharmacist for help she recommended the pink and yellow migraleive tablets, but they do nothing at all for me. I might try an online pharmacy and see what I can get.

Migralieve does nothing for me whatsoever

Here you are, next day delivery:

onlinedoctor.lloydspharmacy.com/uk/migraine/sumatriptan

[quote ShirleyPhallus]Migralieve does nothing for me whatsoever

Here you are, next day delivery:

onlinedoctor.lloydspharmacy.com/uk/migraine/sumatriptan[/quote]
Thank you so much. I live in fear of an attack happening while I’m working.

I end up taking so many different pills when I feel the slightest twinge at work and none of them work and probably make it worse. Luckily up until now I’ve only had a headache come on about 1 hour before my shift ended and for the last 30 minutes I had my head on a desk unable to move and as soon as I got home I vomited with the pain and slept for hours. If it happened in work at 2am I have no idea how I would cope.

I have sumatriptan injections @Moaningturtle for the cluster headaches and nasal sumatriptan for my frequent migraines as the tablets take too long to work.

Migralieve is just ibuprofen and paracetamol along with an anti nausea agent. It's a lot cheaper to use the same dose from regular packets, however I found they only ever helped if I caught the migraine really early.

Triptans are far more effective at shortening the migraine, along with at least an hour asleep in a darkened room. I have them on prescription but have used the over the counter version occasionally and it also helped to reduce the length and hangover time from the migraine.

Having tracked the occurrences I was able to confirm that mine are hormone triggered and the big game changer was going on the mini pill to stop my cycles. I've gone from 2-3 migraines a month to 2-3 a year. They started to re-surge again as I've started menopause but the combination of the mini pill and HRT seem to have improved the situation again.

I’d agree you should track against your menstrual cycle, and try triptans. Have you kept a trigger diary? Track your average sleep, what you eat & drink, medication you take, other stressors and see if there’s a pattern. Any migraine clinic will ask you to do this so might as well have the info to hand and tracking does tend to give a semblance of control - it’s hard because stress (fearing the pain) can cause a vicious cycle.

That’s interesting @GoldenBlue I turned 40 last year so maybe my hormones are changing and I’m entering the peri menopause?

Sounds like typical migraine to me. I had awful migraines for years from the age of about 10 until after I had my children. It is worth keeping a diary to see if you have triggers. My triggers were bright lights, either sunlight, strip lighting or flashing lights. Some people get them in response to certain foods or noise.
I found migraleve tablets helpful, but they did knock me out for 24 hours, so not practical if you have responsibilities.

@NoSquirrels

I’d agree you should track against your menstrual cycle, and try triptans. Have you kept a trigger diary? Track your average sleep, what you eat & drink, medication you take, other stressors and see if there’s a pattern. Any migraine clinic will ask you to do this so might as well have the info to hand and tracking does tend to give a semblance of control - it’s hard because stress (fearing the pain) can cause a vicious cycle.

I’ve just looked back and all my previous very bad ones are in the week before my period. Between 2-5 days before. So that’s definitely a possibility.

Each time I’ve had one I’ve looked back at what I was eating and doing before hand and there doesn’t seem to be a link but I’ll write it down from now on so I have it documented if I ever see a doctor again!

[quote BeLessMe]Google cluster headaches.

Co codamol can actually make migraines worse/more frequent according to my neurologist.

Is your sight test up to date?

Can you do an E consult for your surgery, they may be able to prescribe /refer that way. That’s how I got my neurology referral and my diagnosis of cluster headaches. I hope you get some effective treatment soon.

econsult.net/nhs-patients[/quote]
Cluster headache does not come in "clusters". It's a very specific set of symptoms that don't match particularly well with OP's symptoms. It's relatively rare, more common in men, causes a unilateral eye watering and is commonly known as 'Suicide Headache', so severe that it is. More common in men, treated by Oxygen therapy amongst other things.
OP, this sounds like classic Migraine.
Miserable. Not acceptable to have your appt cancelled, but an econsult might well be helpful, as the diagnosis is made almost exclusively on history rather than examination.
Good luck.

Start a headaches diary on your phone so when you do get to see the gp you might be displaying a pattern.
I had menstrual migraines but they didn’t start properly until I was about 26.
Headaches nurse advised me when possible to go to bed at same time of day, get up at same time, never skip meals, and follow a very regular stable pattern. I think that advice would apply to whatever type of headaches you have. Working shifts makes that very difficult for you but maybe try to be consistent with what you can. Triptans saved my world. Fingers crossed for gp appointment soon.

Also, be aware of taking too many painkillers. There is such a thing as ' Analgesia Headache. Where the headache is actually caused by too many analgesics.
I agree, Triptans sound the way to go, but do push for a one to one appt, ( not nec face-to-face, though) appt either by consult or telephone.

@Mum5net

Start a headaches diary on your phone so when you do get to see the gp you might be displaying a pattern. I had menstrual migraines but they didn’t start properly until I was about 26. Headaches nurse advised me when possible to go to bed at same time of day, get up at same time, never skip meals, and follow a very regular stable pattern. I think that advice would apply to whatever type of headaches you have. Working shifts makes that very difficult for you but maybe try to be consistent with what you can. Triptans saved my world. Fingers crossed for gp appointment soon.

Good advice.

I tried to do an eConsult but it wouldn’t work (surprise surprise!) so I just phoned the GPs to ask for a telephone appointment but apparently they aren’t doing those at the moment! BUT the receptionist was wonderful and managed to get me in with the Dr next Thursday! So not long to wait now and I just have to try not to worry about getting one in the mean time or I will cause myself to have one!

So I need to ask the Dr for triptans and maybe a nasal spray for quicker relief if I’m at work? Anything else I need to mention or ask for to make sure I get the right treatment?

OP, also if you do end up being prescribed triptans there are different ones that suit some people better than others. So if the first one doesn’t resolve your pain etc there are others available and lots of hope.

Thank you @Mum5net that’s reassuring to know

Yes sumatriptan was no good for me but rizatriptan is much better

My GP tried a variety of things until we found one that worked. The tiptan is the reliever when it occurs, but they also tried beta blockers and certain antidepresents that have side effects of migraine prevention before we found the mini pill option.

Keeping a diary or sleep, food and migraine helped as its not always what you persevere.

Example - I thought oranges triggered my migraines but it turns out I crave oranges in the run up to migraines, the migraine comes whether I eat or drink orange but they don't contribute to the likelihood of it occurring. The craving is a useful early warning signal to allow me to prepare (take medication, potentially get home safely etc.)

@GoldenBlue

My GP tried a variety of things until we found one that worked. The tiptan is the reliever when it occurs, but they also tried beta blockers and certain antidepresents that have side effects of migraine prevention before we found the mini pill option.

Keeping a diary or sleep, food and migraine helped as its not always what you persevere.

Example - I thought oranges triggered my migraines but it turns out I crave oranges in the run up to migraines, the migraine comes whether I eat or drink orange but they don't contribute to the likelihood of it occurring. The craving is a useful early warning signal to allow me to prepare (take medication, potentially get home safely etc.)

I’ve not noticed any cravings before hand, but that’s fascinating!

I kind of feel a pressure growing in my brain in the week leading up to one and kind of micro shooting migraine pains, if that makes sense? It almost feels like the migraine is the very painful release of pressure and then it starts building again. It’s so weird and I have no idea why I’m like this.

Sounds just like my migraines. For me the real game changer was identifying the herald symptom, which for me is an urge to crack my neck. If I take paracetamol, lots of water and plain carbs right then, I won't progress to a migraine. But once the pain starts, all I can do is go to bed with a bucket, so its vital for me to always have stuff with me to head it off, though Buccastem (OTC) will stop the vomiting enough to get home if I have been stupid enough to ignore the neck sign (and you wouldn't believe how long it took me to really believe that I needed to pay attention to it)