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 had daily migraines a bit like this and it turned out to be the pill. I did have a history of hormonal migraines and apparently shouldn't have been on the one I was on but had been on it for months with no problems but then for some reason a new packet of the same pill it all changed. I stopped taking them and they stopped.

Is there anything you're taking/eating/doing in the morning that could be triggering them?

I’m a doctor. I would have said this sounds most like a sinus problem but there are red flags for raised intracranial pressure ( pain worse on lying down) which sounds scary but can be benign
I this you need a CT ( or MRI) brain at this point. HeD back to your GP

I started getting headaches like you describe after I had covid. I had them every day for about 8 months. It was horrendous. They stopped after I had my first covid vaccination.
Did you maybe have covid just before the headaches started?

The perimenopause has also caused me to have a lot of migraines, so it could be hormonal.

definitely not walking around x

When it happens I want to curl up in a ball and cry but then moving my head down makes it worse so I can’t so I just sort of sit and try and not move and cry and ah it’s awful, the other thing I want to do is smash my head off a wall (I don’t tho because it would hurt much worse!) or physically open up my skull to stop the pain (obviously I know that’s not possible and it sounds crazy but it’s exactly what I’d love to do right now!

(this is probably tmi but I’m not a troll I’m a regular poster who’s NC) but with regard to the going to the toilet making it worse, it’s actually worse when I pee aswell but it’s only certain times, so see how you can pee without really forcing it and you just sort of pee- that doesn’t make it worse, but see if you sort of make yourself pee or like try to pee faster or whatever (I have no idea what’s actually happening but I guess it’s sort of straining your body like when you pass a stool etc) that makes it HORRIFIC. Like it feels like my brain is going to actually explode. Sorry if that’s tmi its just the only way I can describe it but it makes it so, so much worse.

Changing position makes it worse too- going from sitting down to standing up and leaning forward etc I can actually feel it thumping so much stronger in my head. Sometimes I can hear it but I don’t know if that’s my imagination but it’s like a thump thump thump thump in time with my pulse but I can hear it

thank you so much everyone for the help I’m so grateful for everyone helping me

Did your optician do a visual field test?

If painkillers don’t help then it could be a nerve issue - especially is it’s the same side consistently

does the pain follow the path of your trigeminal nerve?

Definitely push for a neurology referral - the waiting lists are crazy though

Have you been to an optician? If not it would be worth going - there is a rare neurological condition (that’s treatable) that causes insane headaches which opticians pick up and refer for so much quicker than any GP would.

Has anyone mentioned neuralgia? My GP diagnosed neuralgia and I had a very high level of anticonvulsants, cocodamol and anti depressants. In the two years I had treatment for it I did not have a single migraine. It's unusual in young people (I was in my 30's) but having ruled out dental issues and ear issues he felt it was worth a try and it certainly worked.

So sorry for you OP. It sounds awful. I get awful headaches on the right side, get progressively worse, throbbing eye area etc. For me it's sinus related. This may sound bonkers but I wonder if your continued headaches are now partly due to the overuse of the sinus spray. I have heard that can cause problems. So hope you find a solution soon x

My friend has trigeminal neuralgia, not really sure if it’s consistent with your symptoms but she has definitely described it as the worst pain ever. Really hope you get an answer from the doctors.

I think you need to write yourself a list of things to try.

DP is currently off work with headaches - 5 months now and counting. They're still looking for a cause for him but we think we might be getting to a diagnosis slowly (his symptoms are a bit different to yours though).

1. how long did you try Amitriptyline for and at what dosage? A neurologist told us to significantly increase the dose prescribed by GP - and it did make a difference despite the original Amitriptyline dose not doing anything.

2. your pain could be exacerbated by regular use of painkillers. Using painkillers regularly can cause headaches. It would be a good idea to wean yourself off the painkillers but your GP needs to prescribe an alternative.

3. Go back and see your GP. He needs to do blood tests and refer you for a CT scan, at least to start with. A hospital referral to neurology and/or ENT would also be a good idea. Yes there may be a long wait, but the sooner you're referred, the sooner you'll get an appointment.

4. Ask your GP to prescribe something for the headaches. If Amitriptyline hasn't worked there are alternatives - Gabapentin? Sumatriptan? Your GP can write to neurology/ENT to get advice for treatment even though you haven't had an appointment.

5. Self refer to physiotherapy to rule out any musculoskeletal causes of the headaches. They can also refer you for scans so might be a short-cut.

6. Try a food elimination diet and keep a diary of your symptoms.

7. Keep a diary of your symptoms and activities and note what is making you worse - grade the pain out of 10.

8. Good sleep hygiene - try to keep a regular bedtime, not too little or too much sleep.

9. Ensure you're properly hydrated, lots of water.

10. Do you feel as if your GP is taking you seriously? If not, would it be helpful to have an advocate during your appointment - maybe your mum as she's seen how bad you are? Or could you ask to see a different GP?

Have a look at BPPV - you can also get headaches with this which are nasty. I wonder if there's any possibility of this based on the symptoms you describe re dizziness and worsening when you move your head around.

I really hope you get some answers soon, chronic headaches are just fucking awful.

A couple of things resonate from your posts op:

Night sweats
Irregular periods

As well as of course the awful headaches.

Have you had full blood done? I'd be minded to ask for that too.

In my 20s I had irregular periods, night sweats, struggled a bit to keep weight on, was tired but wired, suffered from gastritis and regular headaches.

My GP looked up from his pad, and told me it was undoubtedly life style related and to live more sensibly. I was 24/25.

A few years later I was diagnosed with severe hyperthyroidism.

Ask your mother to go to the GP with you and insist on a full blood screen and referral for a CT scan. Can you or your parents help you to pat privately? If the GP refuses, ask them to note what you have requested and that they have refused your request.

Not read the whole thread, but look at thunderclap headaches too

my dd had bad headaches aged about 10. gradually got worse until continuous. GP prescribed preventative migraine meds, not happy with 10 year old taking that long term.

I read up on iron and started her on strong multi vitamins. Headaches stopped.
GP said - anaemia/iron deficiancy does not cause headaches.

well according to everything online it does.

Just want to quickly comment and say thank you everyone I’ve read every comment and can’t believe how helpful you’ve all been, thank you so much everyone

its getting worse and I’ve felt sick all night from tonight’s headache, I ate some bland food because my mum insisted and the pain is so bad I just vomited twice. I’m going to put down my phone and try and sleep and see what it’s like in the morning. I promise I’ll read everything in the morning and reply properly then

but thank you so so much everyone for helping me x

Have you tried not taking your nasal spray for a few weeks to see if that helps? You could have developed an allergy or intolerance to something in it or be already sensitive to something in it and your body is trying to tell you to stop taking it? I don't drink or have caffeine either, eat really healthy food, but it means I'm so intolerant to most medicines and chemical products that I can only take them in small bursts.

No advice, OP other than push GP for an MRI, and come off hormonal contraception.

Based on the description of your periods that is definitely not normal and could indicate polycystic ovaries and other abnormalities. Have you tried exploring the hormonal route? As a woman with irregular periods definitely get hormones checked at diff points of the cycle and then a pelvic scan. Hormonal problems are common caused of headaches and migraines and the relation to your bowels also could indicate something there.

Do exactly what the GP called cake said above.

There ARE red flags.

You should be sent for an MRI and further investigation now, not in a year.

If the results are fine, then you can try all the other things which have been suggested.

Hi OP I'm sorry to hear that you're suffering so much it sounds awful. How do the headaches present when lying down? I only ask as I got headaches very similar in November at the end of last year. I got sent to A&E to rule out a brain aneurysm but since then I've been diagnosed with Spontaneous Intercranial Hypotension which has been caused by a leak of spinal fluid from a tear in my spinal membrane (diagnosed via MRI). Symptoms include horrendous headaches (caused by sagging brain as no fluid to support it), dizziness and nausea and problems with my hearing. One of the main things with this condition is that Symptoms tend to ease off when lying down and then return once back upright.

You poor thing. This sounds very like my migraines. I was finally prescribed rizatriptan and it gave me days and days of my life back. They work in about half an hour and the pain just goes. Feel a bit tired and dozy on them, but that’s fine compared to the pain. My friend actually has a Triptan in an epipen type injection that she gives herself for severe cluster headaches.

Mine were also getting increasing frequent, for days at a time in relation to my menstrual cycle. I started HRT when still getting periods (perimenopausal), and that has reduced the frequency massively (and helped with insomnia, tiredness and lots of other things). Could yours be related to that?

You shouldn’t have to put up with this ruining your life. There will be something that can help you; keep pushing your doctor to find it.

Idiopathic intracranial hypertension

My adult DD had daily headaches for about 9 months and like you tried everything including acupuncture. She did a good intolerance test as a last resort and turns out she has an intolerance to dairy and eggs. She has now removed them from her diet and the headaches have stopped. Might be worth a try? She bought her test online from York and it included a follow up online consultation.

Sinus infection. Have you had a dripping nose? Or feel fluid running down your throat etc?
The headaches get worse bending over or laying down because it alters the pressure in your head.

I agree… I actually suffer from quite severe migraines but this sounds more like a sinus headache to me.