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😢

Please update how you are OP. Thinking of you x

Sounds a lot like my migraines - although I am fortunate that they are not as intense or frequent.

I hope you feel better soon.

How are you today @Fedupwithallthis2 ?

Thank you so much for all the lovely messages and advice, I seriously cannot believe how many helpful replies I’ve had. I didn’t expect it at all when I first posted.

im seeing the GP next week so hopefully that will get the ball rolling and we can try and see what’s causing this and how I can stop it happening. If I get another headache as bad as the other night I’m definitely going to go to a&e- I was hesitant because obviously services are so busy and it’s an ongoing problem rather than a new emergency, but after reading people’s messages about it being ok to go if it’s particularly bad I’ll definitely go if it gets that bad again between now and the gp appointment.

I’ve had some weird episodes during the night which I don’t know if that’s the headache getting worse when I’m sleeping or just a coincidence. I’m normally not bothered by nightmares but for the last few weeks I’ve had on and off night terrors and paralysis and the last few nights in particular have been horrific- I was up all night screaming with sleep paralysis and nightmares/terrors and I woke up in a sweat 5 times during the night. I don’t know if the nightmares are because of the headache when I’m sleeping, or the stress of it all, or just a horrible coincidence but it’s not something I had ever had before the last few weeks so it is annoying that it’s started. My poor mum is absolutely shattered between me waking up screaming with nightmares and waking up to throw up with a sore head!

I’ll keep updating this thread. Thanks again for all the good wishes x

I had something similar 20 odd years ago - absolutely awful headaches every day, always starting in the afternoons. I had investigations, including a brain scan. They showed nothing. I was advised to eliminate cheese and chocolate from my diet and the headaches immediately stopped. Over time I have been able to gradually re-introduce both back into my diet, with no ill effects.

Go to the optician, tell them you're concerned about raised intracranial pressure from a tumour or similar, most cases if pressure is high in your head it will be apparent as your optic never will be swollen or pushed forward. They will then refer you to ophthalmology and for an MRI.

It may be migraine, it could also be a chronically inflmmed sinus from overuse of decongestant spray which definitely should not be used a dyou describe.

I can only comment on my own experience but before a really nasty migraine of 72 plus hours I get dreadfully disturbed sleep. It is a known part of my pro dome pattern that can give me a heads up. That said if it’s a new symptom for you then let a medical doctor know asap. A&E can be busy but if you’re being really sick and in increadible pain they will check you and do what they are able to help. Before I had a clear diagnosis and care plan I was in so much pain could not see and was being so sick it was frightening. The staff were very kind as the pain had hit the if I am not dying please kill me now level and would not back down and I will always be thankful to the Prof of neurology who came in when called and did nerve blocks for me. It made the world more bearable. If you do need to go take a headache diary with you and let them know what you have tried as all that will help the doctors work out what could be going on and so help you. All the best and I hope you get some answers soon.

Well done @Fedupwithallthis2

Highlight the red flag symptoms - worse when lying down, and different to anything you've ever experienced before

"Normal" headache/migraine symptoms (even when really debilitating) do not need an MRI scan, but those points in your post suggest it would be good to investigate.

Please bear in mind that GPs and neurology are not always great at treating migraine once other causes have been ruled out, and so if you're not getting good care, I'd highly recommend going to the National Migraine Centre

www.nationalmigrainecentre.org.uk/

One of the doctors there, Dr Munro, has a really helpful twitter account:
twitter.com/KatyMunro1?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthor

Have seen her in person several times at the NMC and she was lovely and incredibly helpful.

Covid infection can lead to immune suppression which can allow bacterial or fungal organisms to infiltrate the sinus. Some of these can be gas producing, which can cause intense pain, including headaches.

I agree with this. See your optician as if it is pressure or tumour in your brain they can help.

My friend has something similar she calls them ice pick headaches something to do with nerves in her head which she is awaiting an op for.

I've had six eye operations in the last year. Most normal pain but after one. OMG the pain. I finally needed the cocodamol the hospital had given me. It was pill sleep, pill, sleep for two full days . I don't know how you all cope with these conditions

Optometrists dilate pupils, check the health of the retina, optic nerve, screen for glaucoma etc. You are incorrect. I know this because I am an optometrist commonly known as an optician. Ophthalmologists work in hospitals (so do many optometrists but the optician who does your sight test is an optometrist)

The person who does an eye examination at Specsavers is an optometrist, they do all the medical checks you speak of. An ophthalmologist you would see at the hospital after referral from a GP or optometrist in the community.

Sleep paralysis and vivid nightmares are both side effects of the active ingredients of nasal decongestants. I get both when I use sudafed spray for a cold or sinusitis. I really think your problem is chronis sinusitis from chronic overuse of nasal decongestants sprays. Stop using them immediately. The congestion will gradually go and I suspect you'll eventually feel much better.

If you are prone to angel closure glaucoma nasal decongestants can also cause this which can caus an extremely painful eye to the point of vomitting.

Apologies - I must have been thinking of either the US or Switzerland. I know one of those countries (obviously I thought it was the UK, which is my mistake) has opticians, optometrists, and ophthalmologists, such that: opticians can be anyone with a technical degree; optometrists have to have university degrees, an added technical qualification, and can perform most testing; and ophthalmologists have university degrees, medical degrees, and have had to attend full medical school (so maybe the US is where I was thinking of, as I had to have eye care there). I also got it a bit confused since OP said she’d been to an optician, yet several people were still telling her to go and have her optic nerve checked. Hopefully, OP has already had the full battery of tests then. Thank you for letting me know, and I’ll ask for my previous comment to be deleted.

Re the decongestants, the OP said she used Sterimar, did she not? This is not a pharmaceutical decongestant like pseudoephedrine, but a salt water spray.

So, I think that is unlikely to be the cause of the problems.

No advice, just huge hugs.. it sounds a living nightmare. :-)

any chance it could be related to your blood sugar?? If I don’t have much to eat I get migraines.. I find sugary tea helps. Yours sound more acute than mine but wondered if you have very low blood sugar. Hope you feel better soon xx

I have been diagnosed with vestibular migraines and I also get normal migraines but it is chronic meaning a migraine every single day.

Vestibular migraines are like the worst hangover. You get dizziness and vertigo and it’s not usually painful. However, for me, these migraines often morph into the painful type of migraine.

I am prescribed panadeine forte, a tricyclic antidepressant which I take every single day and I take an anti nausea pill. I have recently changed the panadeine forte for a different painkiller and my migraines are now manageable.

My migraine symptoms changed recently and one side of my face went completely numb and I lost feeling in it.

You need a brain scan. The only way to confirm it’s a migraine and begin treatment protocol is to scan the brain first and rule out a brain tumour or an auto immune disease.

My brain lit up like a Christmas tree on the scans because the migraines were so bad they resembled multiple sclerosis. I have tried topamax and verapramil and propranolol. Basically I have tried everything. I’ve seen two ENT, two neurologists and multiple GPs.

Someone in the comments mentioned having to stop the contraceptive pill. I confirm I couldn’t take the normal contraceptive pill because the pill and migraines don’t mix. It’s something to do with blood clots - if you get migraines you are at an increased risk of blood clots if you take the contraceptive pill.

There’s more research on migraine conditions now and that while they were always thought to be neurological in nature there is research to suggest that it is actually vascular in nature.

You need to be under the care of a neurologist. You need to rule out other causes before you start treatment for migraines. You should keep a diary for your migraines because this is what the neurologist had me do. Like you my migraines got worse throughout the day.

Mine get set off by changes in temperature and certain smells - particularly bleach.

If I were you I would see a private neurologist and get the scans done. It took years before my migraine disorder was diagnosed.

@Intrepidescape that sounds so extreme. You must have been through so much to get to where you are now.

For others reading who have lesser migraines, can I say that my 25 years x eight days a month of headaches all completely disappeared when I went through the menopause.

I haven't read full thread but read OPs posts
OP has dr tried you on rizatriptan? It's something I take when I migraine happens and it really helps. I found the GP treats headaches and migraines as completely separate diagnosis which is frustrating as the symptoms of head hurting are similar. I get them in a specific spot on my temple and when it hurts there even if mild I know it's a migraine and the rizatriptan usually makes it go away. I was told it wouldn't work if it was headaches so it must be migraines.

I saw you had tried amitriptyline - have you increased the dose a few times to see if a higher doasge helps? I thought it did nothing for me but on 50mg a day they did start to work. They also tried me on proponolol but it make me feel a little lightheaded. I'm aware of another one that causes birth defects but if you are done having children could be a possibility (topiramate or something?)

How are you? @Fedupwithallthis2? How was your GP appointment?