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 something similar but less severe. I read in the internet that if it responds to temperature (heat or cold) it is likely to be muscular and if it doesn’t it isn’t. That helped me work out mine was actually a tension thing to do with my jaw and I’ve now solved it mostly through relaxation techniques. I’ve no idea how true this is. I used to sleep with my face on a hot water bottle which really helped. Just be careful not to burn your skin.

I found my chiropractor helped me with headaches

Hi just thought I would post a little update. I’ve been to the doctor, I went last week and she wasn’t too worried about it and said it sounds like bad tension headaches or migraines. She gave me some stronger medication to control it and said to go back in 2 months to check how it is. She said all the vomiting etc is very typical with these kinds of headaches and so is the pain. Thanks everyone for all the advice, I’m hoping these tablets will help it. It’s not made a difference yet but I only started it last week so I need to be more patient!

Really glad you had a good appointment @Fedupwithallthis2

If you don't mind saying what medication did she prescribe - a preventative or an acute treatment?

One thing I wanted to flag is that it is really important to not take triptans more than 10 days a month, or painkillers more than 15 days a month, as you risk developing medication overuse headache on top of existing symptoms.

This is something not a lot of GPs are aware of, so I always tell people just in case. It's obviously really easy to take more than this when you're suffering daily, but causes more problems down the line (have been there!)

Please do consider the national migraine centre if you don't get enough relief, they are excellent :)

I can’t actually recall the name off the top of my head but it’s definitely a triptan. I wasn’t aware they shouldn’t be taken so often, I was told to take it everyday! Thank you for the heads up about that. I’ll give them a call tomorrow and double check I’m definitely supposed to take it everyday.

my mum wanted further tests and maybe even a scan just to check everything, but the doctor said it’s not necessary and to come back in 2 months if it’s still happening and they will consider it. I really hope this is the end of it though and it doesn’t come to that, i’m absolutely exhausted with it all

Haven’t read the full thread so apologies, but could it be idiopathic inter-cranial hypertension? Any pulsing sound in your ears?

@Fedupwithallthis2 from your initial post I thought it sounded more like temporal arteritis which is inflammation of the temporal artery. Usually unilateral and the temporal artery is very painful on palpation. I’m not sure how old you are but it is most common over the age of 50 and can be ruled out with a blood testing checking for ESR (if it’s normal then it makes it very unlikely). Tension headaches tend to be both sides and patients often describe it as a band like tightening sensation - as if someone is squeezing their head. It could be a migraine but odd that you would suddenly develop migraines - how old are you? Migraines also don’t tend to last days and days. I hope it’s getting better now

I'll second to this as well as going back to GP to be on safe side. Osteopaths can often help with both migraines and tension headaches. Worth a try

OP I’ve had migraines for 30 years, some of the symptoms you describe are not typical of migraines, (which is not to say they couldn’t be - they could and they could also be sinus-related) but you should have been referred for an MRI to rule some serious things out.

Head pain that is worse lying down, bending, or passing a stool should be checked with a scan as the symptoms could potentially indicate intracranial pressure.

Your GP has missed a red flag and prescribing you triptans daily is not ok.

If I were your mum I would for a second opinion asap or simply take you to A&E next time it happens.

If you experience blurred vision, difficulty talking or moving, shallow breathing, confusion you should go straight to A&E.

Triptans should definitely not going to taken everyday! Glad you are going to double check this

Sometimes a 3 day course can be prescribed to "settle" the brain, or prevent menstrual migaine, but this is off-label prescribing and only for specific triptans (frovatriptan). Generally a neurologist would authorise this, not a GP.

Hope this doesn't sound patronising but it's definitely not amitriptyline you've been prescribed? (this is a preventative that is taken everyday, and the name similarity causes confusion)

Triptans are great but their role is for acute migraine - and staying under 10 days a month to minimise risk of medication overuse headache is critical. If you are having more migraines than this, you can take a preventative medication too to try and reduce attacks.

I'll echo again that GPs are not always great with headache/migraine. I got a years worth of terrible advice (including triptans, codeine etc being given out like sweets, leading to medication overuse headache). The National Migraine Centre were far more helpful!

Also - the NMC can recommend tests and medications for your GP to do, based on the symptoms you're reporting.

As other posters have said, the symptoms you're describing could very well "just" be primary migraine, but you do have a red flag symptom. If your GP has prescribed daily triptans, this indicates they are not knowledgeable enough on migraine to give you good advice. This is not uncommon sadly.

If it is the cost that is preventing you from making an appointment, I believe they offer various payments options and aim to never turn away a patient based on this. Appointments are now online, so you don't need to worry about travel.

If I was your Mum I would really want you to go and see one of the doctors there

www.nationalmigrainecentre.org.uk/

From their website:

Book a routine consultation today to see a trained GP headache specialist from the comfort of your home (video and telephone consultations available).

For routine appointments, you’ll be added to a waiting list. Waiting times can be some months due to high demand (we are working to recruit more doctors to work at charitable rates). You can usually be seen much more quickly with a private appointment instead, often in a few days. – see above to find out more

There’s no fixed fee for routine appointments. Instead, you’ll be invited to make a donation towards the cost of your consultation. We are a charity and make no profit – your donation helps fund treatment as well as headache research, professional training and patient education.

I should preface this by saying I'm not a doctor but as so many others have made suggestions, I thought I might too. I have read the whole thread including your latest update, but one thing that jumped out at me is that it could be menstrual headaches, not migraines (I know what they're like and they are desperate bad) or cluster headaches.

You mentioned back near the start of the thread @Fedupwithallthis2, that you don't have a period every 28 or so days, you might have one every 60 days (so 6 periods in a 12 month calendar). That combined with the feeling you get when you try to push on a bowel movement or to speed up your peeing, would give me pointers to high blood pressure (which is felt most acutely in the brain/skull).

Could you discuss with your GP to find out how your blood pressure does over a 24 hour period?

Have you undergone any procedure that might have required a spinal block? Anything that might have required an epidural for some reason? At any point in your life. I'm only asking in case you might be suffering from a CSF leak. My MiL had a procedure carried out which did require a spinal block and following that procedure she went from being a vital, active woman to an old lady overnight because she couldn't move, the room spun, her head was, as she put it, "lifted off her" because she was having the most terrible headaches.

They are the two things that I thought of that might be contributing to the headaches you're encountering.

Biokult is right.

If I was your Mum I would really want you to go and see one of the doctors there
Agree.
This would be worth taking holiday from work to check out.

@Fedupwithallthis2 so sorry you're dealing with all this. Horrendous. So whilst vomiting might be normal with migraines to my knowledge night sweats definitely aren't and are often indicative of a more serious issue. Did you mention the night sweats to your GP? I'd definitely be asking to see a different GP if this was the same one you saw before as it really doesn't sound as if they are taking this situation seriously. If you do have another really bad episode of pain and vomiting overnight I'd go to A&E. My friend who is an A&E consultant said to me recently that whilst they obviously don't want people in A&E unnecessarily in reality the whole system is on its knees and the only way to actually get urgent care is to go to A&E, so she recommended it to me when a GP wasn't taking a serious problem seriously. Here's hoping the medication they gave you works though.

Thank you so much for all the replies and help. No I’ve never had anything that would need a spinal block and I’ve never had that before. My parents wanted me to get blood tests so i’m just waiting for the results for that, I got that today.

My heads actually been sore all day today but initially I thought it was dehydration (I have been drinking but probably not enough) but I made an effort this afternoon to drink a lot more and if anything the headaches just got worse and now it’s agony. So I think it’s one of the headaches starting again. It’s right under my eyebrow as if someone is pressing and squeezing my forehead and I feel so sick and horrible. If I start throwing up with it again I think I’ll call the out of hours doctor and see if I can get some other help. Moving is making it so much worse, and wearing sunglasses doesn’t help either.

I’m so frustrated - I’ve got such a big day tomorrow and now I’m going to be unwell with this all night no doubt.

I know the doctor said this is normal with migraines but it’s seriously ruining my life, im exhausted with it all

I'm assuming you have had a full blood work up? The nights sweats are unusual. I'd want diabetes etc ruled out

Yeah that’s what I got today, hopefully the results show up something straight forward to fix x

Did they check your hormone levels (FSH, LH etc) and were these normal too OP?

Is your blood pressure ok and has that been checked during the headaches?

I think you mentioned previously you had recent full optician assessment?

Do go to A&E if you haven’t had the head scan yet, once you have excluded something requiring urgent attention, get the referral to neurologist.

The symptoms are severe and a diagnosis cannot be assumed.

It’s perfectly ok to go to A&E with this level of pain, all an OOHs doctor can do is prescribe strong painkillers and send you to A&E.

I think that might be included in the blood test but I’m not actually 100% certain, I really should have checked. I think it was a ‘full test’ though if that shows hormones? I’ve never had a head scan though, my doctor said it wasn’t necessary.

to be honest I was so close to going to a&e last time but I held off because I thought I’d get a row since it’s a chronic problem (even though it’s particularly bad with each headache) and after the doctor diagnosed tension headaches or migraines it put me off it even more because they said it’s not a life threatening thing, no matter how painful it gets.

I haven’t been physically unwell with the headache tonight so that’s actually a plus and it’s not turned out as badly as I dreaded it would. If I start being sick again with it I’ll definitely contact someone and get help tonight

i hate sounding like I’m complaining but I’m just so exhausted and fed up with it all. I permanently feel like I’ve been hit by a bus and it’s getting worse. My mum had pointed out how often I’m sleeping and I hadn’t realised because it’s just become normal- I get 8-10 hours of sleep but need a 1-2 hour nap everyday or else I’m physically falling asleep at the dinner table, im just so tired all the time. Although that could be from the headaches and disrupted sleep rather than a problem itself x

You haven’t really got a diagnosis yet, you’ve got an assumption - which may prove to be correct - but sudden onset migraines with certain symptoms are usually diagnosed once more serious things are excluded not before.

The important symptoms to flag to a doctor are:

• Head pain, worse lying down, bending, coughing & passing stool
• Nausea, vomiting
• Dizziness
• Night sweats
• Fatigue/drowsiness

Don’t forget that list.

You don’t sound like you’re complaining OP, I think many of us are worried you haven’t been to A&E with your symptoms, another GP might have advised you to go to rule anything out on a scan.

Why don’t they think a scan is necessary? Have you asked for a second opinion?

Check when you get the results about your hormone profiles as the blood tests may not have included them unless you specifically discussed these when the request was made.

Arrange the specialist referral as it may take time to come through.

These symptoms don’t seem typical of tension type headache or migraine alone, as PP above said there is a lot to rule out here first.

I'd add to Mirabai's excellent list, 60 day cycle.

Do ask for a copy of your blood screening.

Good luck.