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😢

I suffer from sinus problems and this sounds like sinus problems

Had something similar (not as extreme) gp told me to take sudafed I wasn't congested. He said there's a tube between ear and throat (I think) and that mine was blocked...worth a try. It worked for me

@Fedupwithallthis2 Lots of people want to help but I now count 3 doctors on this thread saying that it may be nothing serious but you have red flags for serious conditions that need to be ruled out and that you should go back to your GP (or see another) and emphasise the things that make it worse. You need an urgent scan.

I have a clear diaognosis of chronic migraine and cluster headaches. Migraines no matter how they present you have an overriding need for stillness and quiet with reduced light. Clusters you have an overriding need to pace and even claw at your face or worse. NOTHING exists but the pain of cluster….nothing …the pain is that bad. It often comes with Horners Syndrome so you can look like you’re having a stroke. Hence its nickname ‘suicide headache’.

If you have any form of chronic headache disorder it is all too easy to take pain relieving drugs as if they were smarties. That can easily set off a horrendous ‘medication overuse’ or ‘rebound headache’. The headaches from that nasty little pit really can be something if you fall into it without realising. In honesty if you’re really struggling really push your GP to make a referral to a hospital headache clinic. This is following the NICE and BASH guidelines to help GP’s identify and manage those living with severe forms of daily headaches. If your GP has failed to help and will not make a referral it’s worth contacting either the Migraine Trust or OUCH UK for support to help you access a headache clinic. Not going to lie- covid has really messed up referrals to headache clinics so some areas it one year and others its now three. The neurologists will do their best to triage those who need to be seen faster based on the reason for the referral.

It is worth the effort to doing all you can to keep an in-depth headache diary as that will be the first thing any headache clinic will want you to do. This will help them begin to see how your headaches present and will help the doctors there to start to help you. I can recommend the Migraine Trust and OUCH UKs website for information on various forms of migraine and cluster headaches and other rare related Trigeminal Autonomic Cephalgias. They also have a questionnaire on ‘Could this be cluster headaches?’
Hope that helps.

Mine was the opposite sort of. I was getting daily headaches and went on the contraceptive injection depot provera and they went away for 12 months. Unfortunately they’re back now, so I’ve stopped the depot again but it definitely helped for a while.
I’ve also found accupuncture helps but it’s so so expensive.

OP
I know you’re off to bed now but
If you’re vomiting ( yes I know you've just eaten ) aswell please go to A & E

You can get headaches from taking too many painkillers too. I'm on a preventer for migraines. Maybe ask if you can try that?

I had very very similar symptoms. My pain was unbearable at around 3am to 8am then came back in the afternoon getting worse. This was for a solid 18month. After trying various tablets nothing worked at all. The headaches went randomly and I get niggles here and there but no cause found and I hope they don't return

Have you considered carbon monoxide poisoning?

That really does sound like migraine then @Fedupwithallthis2 I also get the thumping on exertion which definitely include the things you describe!

You definitely need to be checked out by an expert like at the National Migraine Centre - they'll be able to confirm that the migraine symptoms are not being caused by anything else, or recommend further tests if they're unsure.

The vast vast majority of the time migraine symptoms are primary (i.e., no specific cause), and so you need to focus on managing triggers and exploring medications.

I have been in your situation and know how hideous it is, but please remember things will get better with proper advice :)

For now, as a very simple thing to try - there is evidence that vitamin B12 and magnesium are effective in preventing migraine and reducing symptoms - they are recommended by NICE so is a decent evidence base. Could be something to have a go with while you wait? migrainetrust.org/live-with-migraine/healthcare/treatments/supplements/

I was diagnosed with scoliosis when I was 63. MRI scan for something else. The chiropractor has been such a help. I've had back pain and headaches.

I've also had sinusitis. That was hell too.

@Fedupwithallthis2 have you been in an accident, vehicle or sport type, nasty fall?

Do you have a problem with your hearing?

Can you stand on one leg with your eyes shut?

Sugar is what triggers my bad headaches, which have started relatively recently. Hope you get sorted as it’s miserable.

can you afford a private consult with a neurologist?

Dr Chatarjee did an episode with a woman suffering similar you might find interesting I can’t paste the link here but Google dr Chatarjee cluster headaches or go on you tube

I am an acupuncturist and see lots of people with migraines and headaches as it is one of the things NICE recommends as a treatment. If you came to me I would make you go back to your GP and demand a scan. I would also give you a treatment (probably need about 6 or 7) you should get results before hand though.
However it is really important that you still get a scan as acupuncture can take away pain, and sometimes pain is an important warning. I would also recommend an exclusion diet to rule out a food intolerance. Get a proper acupuncturist not a physio.

See a different GP in your medical practice, write everything down & take your Mum with you too.
I bet any money that you'll be treated differently & get referred.
The majority of GP's are brilliant & worth their weight in gold (I'm so lucky with mine & I make sure I tell them ) but unfortunately a few GPs are either set in their ways or just plain useless.

Have you not had a scan at all ? My DIL had similar symptoms and it turned out it was pressure on a nerve in her brain . She has oxygen to help with pain . Have you enquired how much to go for a private scan , could your family help because this must be so debilitating . I get mild headaches through teeth grinding and that’s bad enough . I really feel for you .

Years ago I worked for a gas cylinder company who had a medical division and they delivered small domestic medical grade oxygen cylinders and the client had choice of facial/nasal tubes or masks for the intake.

a lot of these Clients had the oxygen for migraines and apparently it really works! It was only available (where I lived at the time) via script from the Doctor but surely its worth trying while you wait for a CT scan ?

Two sons here and we had both and different issues to these.

19 year old blinding headache which resulted with a clear CAT scan.

He had been in huge pain chewin pain kilets for 10 days. One session of acupuncture and he was sorted out🙏.

Other son 22, out of nowhere got a sudden vicious attack of pain that was dreadful. We got dental, GP meets very fast, and after dental xrays showed he was clear Doc said his description was neuro trigeminal, he put him on amitriptyline which was amazing for relief. He's had all neurological clearance.

The FB neuralgia group has been great. Well worth joining.

There are different blockers out there, but finding the right one can be very challenging.

I am so sorry.

The effects of bending down, lying down sound like sinus to me. For something so minor the pain you can get is horrendous. First time it happened to me I was convinced I had a brain tumour.
First try steam. Lots of it and frequently.
Buy Otrivine drops ( spray if you can’t get the drops) Use as directions.
Mix tomato juice, a tsp lemon juice, a tsp Tabasco sauce and a crushed clove of garlic in a mug. Heat. Drink 2 mugs of this two hours apart. Never fails. If it’s sinusitis these will ease the pain.

Hi OP, haven't read the thread so not sure if this has been mentioned by other posters but I had headaches like this when was anaemic.
I'd wake up fine then by lunchtime it would start coming on and get worse through the day until it was unbearable. Like you said ij OP any bending etc was so painful. My head would throb.
Triptans helped but didn' stop them. They didn't go until I got my iron levels back up.
Hooe you find out what's causing yours- it's miserable.
I think low levels of B12 can cause migraines too

I had this, I cut out all caffeine for a year and drank 5-6 large glasses a day. They stopped after 6 days.

When was the last time you went to the dentist?

I sat next to a guy in the office who had symptoms just how you describe. He was diagnosed with cluster headaches but no treatment was working. He was clearly in massive agony. A colleague recommended he get a dentist appt and eventually he did, he was diagnosed with a big abscess in his jaw. It took a while but the dentist sorted it out and the headaches stopped.

Did the onset coincide with you getting a new laptop or computer? If it's every day and you use a laptop /computer most days or every day then it could be to do with the refresh rate. I had the worst headache of my life after getting a new laptop. I managed to change the refresh rate and the headaches stopped.

devblogs.microsoft.com/oldnewthing/20040625-00/?p=38713

I agree. So many people - all wanting to help - guessing, but you need to be seen. Either go back to your GP and push for an urgent referral for a scan, or if you can find a way to fund a private neurology appt, do that.