Please please please someone help me

[Fedupwithallthis2]

I’m not exaggerating when I say that this is ruining my life. I really need help from someone but I don’t know what to do or where to go.

ive been getting horrendous headaches for the last few months and I actually think I’m going to have a breakdown about it. I’ve been to the doctors and been told different things each time, migraine, stress, tension etc but regardless of what it is, nothing is helping. I’ll describe the headaches below and I’m praying that someone recognises a feature and knows what it is and how to stop it.

1. it started off a few months ago and at first the headaches were occasional and it got worse and right now it’s everyday or every other day.
2. they start around lunchtime/afternoon and get worse throughout the day. By dinner time they are unbearable and by night time it is horrific
3. The pain is almost always on the right. It’s a throbbing ache around my right temple and right eye area. It feels like someone is actually drilling through my eye
4. random things make the pain worse- sneezing is horrific, as is coughing, moving in general but especially bending down or moving my head down eg to tie my laces and then bringing it back up. The other thing that makes the head so much worse is lying down, the light, touching my right temple/eyebrow area or physically passing stools , it honestly feels like my head is going to explode.
5. Nothing helps- I’ve had stuff from the doctor and OTC and I’m currently chewing painkillers like sweets and it barely takes the edge off it
6. I feel sick and occasionally dizzy with them. I’m not always physically sick but sometimes am from the pain
7. im not tired, I’m not stressed, I’m not dehydrated and I can’t think of any reasons this is happening
8. ive been to the optician and I don’t need glasses
9. i get really irritable with them. Little things annoy me and I want to scream and cry or explode all the time
10. lying down and sleeping for a little nap or a few hours makes it so much worse afterwards. But lying down and sleeping for 12+ makes it a bit better but then it starts to come back at lunchtime after I wake up anyway

please, if anyone has any advice or ideas I’m actually desperate this is ruining my life. My doctor won’t do anything and said even if I do get a referral it will take well over a year anyway and I can’t afford private. I’m really struggling and honestly feel like I could smash my skull with a hammer to get relief

please someone help me😢

It doesn’t fit with the typical trigeminal neuralgia (that a long standing friend of mine has had to endure for many years) but it could match with the pain being on one side mainly and in the region of the eye and forehead - it took a while to get to the source of his problems - although his pain comes on far more abruptly.

Have you been asked about sleep apnoea? Do you snore? I only ask as I have 2 friends with this - both relatively lardy, not massively overweight but the guy I worked was perpetually tired and moody and suffered from headaches regularly - he was surprised to find sleep apnoea was causing his tiredness - he slept alone due to working different hours to his wife. A CPAP machine greatly improves his life.

We’re all clutching at straws - obviously - if you’re worried about a brain tumour could you pay to see a consultant privately and then, if necessary, have a scan on the NHS - I guess it’s a neurologist you would need to see.

Have you read through the data sheets that comes with any medication you may be taking? You’ve mentioned a sinus spray - it’s possible your medication needs to be reviewed for any possible causes- it could be that you are having a very uncommon but not completely undocumented reaction to something you are taking on a regular basis.

You might feel your GP isn’t listening to you but they do have to account for all their decisions and document them - you will need to go back if you are still concerned that more could be done.

Incidentally @Fedupwithallthis2 headaches caused by the Chiari malformation (essentially cerebral spinal fluid unable to drain from your skull and so creating monstrous headaches) often don’t make themselves known until adulthood.

@Fedupwithallthis2
It’s not related to painkiller withdrawal?
It can become a vicious circle.

Opiates can make a headache worse, ( in my experience)
I get migraines , and yes, painkillers don’t do much.

Do you get a visual “ Aura” beforehand ?

Definitely go back to GP

It does sound migraine like
But I’m not medically trained.
Just a migraine sufferer.
Food allergy?
Hunger?
Caffeine Withdrawal?

Later adulthood*

Magnesium
Sorry if someone already mentioned this, I havent read the entire thread

I also have chiari malformation. When I read your first post I immediately thought of my symptoms.

My friend has it too. Diagnosed at 37. It all just came together when I read the OP’s symptoms.

That’s interesting
A lot of migraine sufferers begin getting sick headaches in childhood.

My migraines began at 13, right in puberty. Such a magical time.

Get yourself to A&E at hospital without delay. If you explain your symptoms they are likely to give you a scan. I wouldn't bother going to your Dr first as he would probably refer you to hospital anyway.

Please ask about this. It fits your symptoms.

I had an MRI within weeks when I had debilitating headaches to rule out a brain tumour. Your GP is massively fobbing you off.

PS I’m not saying it’s that and mine wasn’t it but they can’t make you wait for months without checking!

I suffer both migraine and cluster headache. What you are describing sounds like migraine not cluster headache. Go back to yoit gp and ask for referral to your local headache clinic. In the meantime, stay taking high dose vitamin b12 migrasoothe make a type that's available on amazon, it must be that dose, and also take magnesium daily. Ask your gp to prescribe a type of Triptan to try some are available in melt form which means they are absorbed through your mouth so useful if you vomit sometimes. The headache clinic may prescribe something like propranolol. As hard as it sounds, you need to come off of pain killers, taking them regularly can trigger rebound headache and you are now likely better off without them. Additionally ensure you are drinking lots of water, adding dioralyte can help the headache. It's horrible, but these can help. Good luck, but do ask for that referral.

Same here, no treatment as it seems to have calmed down for the time being but it sounds a lot like sinusitis. Maybe see if you think this fits and whether you can get something for it but if not you need this investigating further.

I haven’t read the whole thread but please get checked out, you definitely need a scan. Headaches that get worse on movement could be indicative of a brain tumour. I suffered for weeks with debilitating headaches that got worse on movement, such as bending down to pick something up. Although my GP eventually agreed to arrange a scan, I became so ill in the meantime that my family called 999. It turned out I had a benign tumour which needed to be removed urgently due to its location. Please, please be persistent with this and don’t let anyone fob you off. Good luck OP x

I would ask for a brain scan just to be on the safe side

Any severe headache that is worse when you cough, sneeze, bend over or strain (eg bowel movement) needs a brain scan to rule at the nasties asap.

Until then, speculating about migraines, cluster headaches, sinusitis is pointless.

^ this 100%

you need an MRI - urgently.

someone mentioned pituitary up-thread and that was the first thing that came to mind. with the pain you describe and lack of periods - that fits how a pituitary tumour presents.

I'd go to A&E and insist on a scan. don't leave without one

@Fedupwithallthis2

Hey OP. I'm not sure if you'll see this as you've had so many replies & it may of been mentioned already (haven't read all the thread) but Google IIH. Hope you manage to get sorted soon x

Have they considered hormonal /hemiplegic migraines?

Please check your blood pressure IMMEDIATELY.
this happened to me and I was end stage kidney failure which had pushed my blood pressure to such an extent my vision was effected as the blood pressure was causing my optics nerve stress.
OCCASIONAL headaches become more and more frequent until I had them virtually every day. Praying you’ll be fine and will have better luck than me. X

Hi there I haven’t read all the thread but would ask if you have had your blood pressure checked. I was experiencing very similar migraines and it transpired that my BP was high….I was prescribed blood pressure meds and have only ever had 1 or 2 minor headache since, in about 18 months.

I should have mentioned, the migraines were so painful I was throwing up and really ill, light sensitive and nauseated.
Do check your blood pressure.
also no meds worked for me either, of course, as I had an underlying major disease

So are you on he waiting list- they try and out you off but just say yes, at least get the ball rolling there. If you have been referred poss try ringing the department you have been referred to and ask about cancellations.

Sounds like migraine. I started getting these at puberty, would build over time until I was bedridden every few weeks. Continues with growing frequent wiping me out at least a couple of days a month, until pregnancy. Nothing touched them except prescription migraine meds ( I can’t recall the name unfortunately!). My daughter is now a teen and I’ve had maybe 5-8 episodes since she was born. I do still get sinus headaches but they’re quite different and not like your description.

insist GP refers you to a specialist or present at AE (likely you’ll get faster diagnosis from AE).

good luck