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😢

Do you get visual disturbances before it kicks in? I would see a sort of pixellated snake in the bottom left of my vision before a migraine kicked in - I stopped taking the pill and they went.

@Fedupwithallthis2 just noticed your post ref irregular periods etc. I am / was the same. You may want to get a hormone check ( not just reproductive hormones - all of them).

I fid reply up thread- incase it gets lost @Fedupwithallthis2

I have similar symptoms - I've been diagnosed with idiopathic intracranial hypertension* and papilodemia.

*also known as benign intracranial hypertension or IIH or BIH

I had an enhanced OCT scan at specsavers where they saw my optical nerve was swollen- referred to hospital for an mri, lumber puncture to rule out tumer etc.

Immediately go to A&E for an urgent scan of your head, if you’ve not had that yet

Short term blood tests, including hormone levels, if you haven’t had these recently

Longer term referral and wait to see neurologist

Insist they take you seriously. Don’t let them fob you off.

Doesn't sound like GCA at all tbh. I have/had GCA.

Haven’t RTFT but wanted to say that Sterimar won’t help with inflamed sinuses (it’s just saline) - my guess is you have a chronic sinus infection/irritation (possibly allergy related). A daily steroid nasal spray could do wonders for you. Ask your GP to prescribe one. Not sure if you can buy them without a prescription.

This.

see you dentist rather than GP. They will take a few X-rays and it may well be your sinuses. They will be able to prescribe antibiotics.

@Fedupwithallthis2 I haven’t read the full thread, so don’t know if anyone else has suggested this, but please look into “chiari malformation” I have a family member who has it, and also a friend recently diagnosed and their symptoms were exactly the same as yours. It’s to do with a deformity where the back/bottom of the-brain bulges out too much where it meets the spinal cord and causes excess pressure. The main symptom that made me think of it when reading your op was that it is made worse with sneezing and coughing, it’s a major red flag for it. Have a word with your GP and ask to be refereed to neurology.

ct scan at a and e

OP my DH is a Neurologist here in the USA who has headaches as one of his specialities. I will ask his opinion as soon as he is available.

Of course he can’t diagnose but will most likely have suggestions of how you should proceed.

Insist on an MRI. Also, ask your GP to refer you urgently to Maxillogacial surgery - to check for Giant Cell Arteritis or Trigeminal Neuralgia. Both have atypical variations and sound very much like your symptoms. If you don’t get anywhere, go to an A+E with a MaxFax department and insist to be seen. These disorders can be life-ruining and debilitating, but both have fairly simple treatments to resolve or control. Best of luck x

Seriously. This.

I get Trigeminal Neuralgia, controlled with medication now. It sounds like that, but needs diagnosing properly, so I'd go up to A&E.

www.nhs.uk/conditions/trigeminal-neuralgia/

Hope it soon improves.

Ear piercings?
I had a friend who frequently used to get awful migraines, but they stopped completely when he got some ear piercings, I'm pretty sure they were daith ones. Maybe try looking into that? I'm sorry you're having to deal with this

I have suffered similar sounding headaches for many years - mine don't sound as bad as yours though. Do you get very thirsty as well?

Mine are definitely hormonal. One thing I found really helps is zolmitriptan or Sumitriptan (can buy over the counter online). You may want to speak to your doctor before trying first. They are wonder drug to me - take and the headache eases.

You have my sympathies- headaches can be so debilitating.

Read your messages again and note the night sweats. You really need this checked out - night sweats are often a sign something is not right (especially at your age as this is not going to be menopause relates sweats etc.). Echoing others I either go back to GP and insist in referral (please mention the night sweats) or when it is bad go to A&E.

Hi. This sounds very much like what my daughter has been suffering with, horrendous pain especially in the evening and waking her up at night, but also migraine-like and vomiting. She's had multiple antibiotics for sinusitis, but it was affecting her ability to work so I took her to a private ENT consultant.
He diagnosed her with trigeminal neuralgia. We're just waiting for her medication which will possibly be carbamazepine, which is an anti-epileptic. Normal painkillers don't touch it. It may be worth you looking into this.

Sounds like my cluster headaches. If you haven’t, try sumatriptan, life changer. You can get a private prescription from an online doc. Worth a go in the short term I would think.

I'm not sure whether it's helpful OP but I'll tell you my experience with persistent and severe headaches which I'd been suffering from for a couple of years. I was convinced it was peri-menopause as I'd also been getting night sweats.

Painkillers had mixed results-the most effective was the ibuprofen with lysine but sometimes they wouldn't touch it. I felt sick and dizzy, had constant brain fog.

I tried various HRT all of which made the headaches worse. Blood test results showed my thyroid function was normal and no other deficiencies.

I had my eyes tested and had new glasses even though there was only a slight change in my prescription and I even had a mouth guard made by the dentist as I thought I may be grinding my teeth at night. Still no joy.

Like you, leaning forward made it worse and I found in fitness classes I couldn't do any moves that involves jumping as if felt like my head was going to explode.

Then on one of my multiple visits to the GP I saw a young female trainee doctor who gave me a very thorough investigation and realized something didn't add up so immediately sent me to the hospital for a CT scan. They found a brain tumor

I spent a week in hospital and after a biopsy eventually diagnosed me with a large but benign pituitary tumor which I've just had surgically removed. I'll also need to have radiotherapy in the next couple of months.

The stats on pituitary tumors are quite shocking-apparently 1 in 10 people will have them during their lives. Many are tiny and won't cause issues or if they do they will affect hormone levels but some will need to be removed surgically.

So if you take anything from my story please get yourself a CT scan. Ask to see a different GP for a second opinion, hopefully a female one. In my experience male (often older) GPs are dismissive of women's pain and discomfort, particularly when it involves something as, in their view, trivial like headaches.

Hope you get some answers

OP I hope you’ve managed to book yourself an urgent GP’s appt today and your mum can go with you.

Sinuses
Allergies to something in the room
High blood pressure

Are you in the same location when they start?

You poor thing. If you haven't got the strength (understandable) get your mum or someone to advocate for you with your GP to insist you get a specialist referral. Sadly the nhs is in a dire state so waiting times could be an issue. You can try and get a private referral and subsequently a scan if you can afford it. If your gp won't comply, roll up to a&e . Then shame on your GP. Until you are scanned then most of this information isn't going to be much use, for now anyway.