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 haven't had time to read the thread, but I couldn't leave this without checking if you've seen a gynaecologist?

My sister had this. It went on for years. She had brain scans, medication everything. It turned out to be stage 3 cervical cancer (she was 35 but had never been to a smear test). The headaches were hormonal related. She's just finished her first lot of treatment.

I know it is a rare cause of headaches, but you need to see it as a whole part of your person and not just headache related. I'm not syaumg it's cancer, but I'm saying if you have any other symptoms, then don't just concentrate on the headaches, is there anything else going on? Spotting, pain anywhere else? Sometimes we get distracting pain which takes us away from other causes.

It doesn’t sound like cluster headache to me. It sounds like a CSF leak which one previous poster (who had also had a CSF leak) mentioned.
the fact that it gets gradually worse the longer you are upright and can be alleviated by a long period of lying flat indicates this.
the other name for cluster headaches is thunderclap headaches because the do not come on gradually and increase in intensity. They start from nowhere with 100% pain and they subside a bit like that ok.
You can self-refer to the National Migraine Centre which is a charity. They have a fabulously informative podcast with a specific episode of CSF as well as one on cluster headache. It is called the Heads Up podcast.

@Fedupwithallthis2

The good news is that severe headaches that have persisted for this long without other symptoms are unlikely to be anything serious. However this of course does not mean it isn't serious in terms of the impact on your daily life

Make an appointment with the National Migraine Centre - they rely on donations but will work with you if you cannot afford their standard price. They are considered one of the best migraine/headache centres in Europe and the doctors are lovely. I'm not exaggerating when saying their advice and support changed my life. www.nationalmigrainecentre.org.uk/

I suspect you have a degree of medication overuse headache: migrainetrust.org/understand-migraine/types-of-migraine/medication-overuse-headache/

The national migraine centre will be able to advise further. Wishing you the best of luck.

This sounds like a cluster headache. They’re absolutely horrific. You need a neurology referral.

Your symptoms almost mirror mine, eventually after pushing for it I was given an mRI which discovered I have a chiari malformation of the skull, essentially I was born with a hole at the base of my skull and part of my brain was slipping into it, I had a 22mm decent of my brain tonsils (actually a thing) into this gap and it was causing fluid inconsistency. The pain was unbearable and was ruining my life! I’d really urge you to push for a check, and I really hope you feel better soon.

Are you hypermobile? I occasionally get spells of horrible headaches (albeit probably not as unpleasant as yours) and it was put down to tension from hypermobility. I was put on amytriptaline (sp?!) when I was going through a bad spell.

Be careful with overuse of painkillers (not overdosing, but for using them too many days in a row). You can get headaches/migraines from overuse.
Also sinus sprays generally
shouldn’t be used for more than around 3 days. The one you use may be different as I have no knowledge of that one, but I found out recently they quickly
become addictive and you need to wean yourself off.

Sent too soon. One of my gp mentioned something about pain medication causing headaches I think it was called something on lines on paracetamol headaches . Read on it . Amitriptyline helped me and I am still taking it and even though it takes a while to work (in my case 4 weeks ) it was most effective. I have had two MRI s and all turned out normal. Request gp for a scan anyway regardless if the wait so that you get in the queue. I hope you get something that works for you op as it's horrible to suffer like this .

I am not a doctor, so obviously getting professional medical advice is the best way forward.
I would say, as a lifelong migraine sufferer who gets severe pain in the right side of my head, the book "Understanding Migraine and other Headaches by Anne MacGregor" changed my life. I found out through this book that, for me, the migraines were being caused by low blood sugar. Now, if I feel one coming on, or at certain times of the month when I know I am likely to get a migraine, I stuff my face with carbs of any kind, I drink orange juice and eat as much as I can to get my blood sugar up and it works for me. My headaches are a lot less severe and less frequent now.

Your symptoms remind me of a woman who featured on the reality show ' Dr in the House', it's on you tube. Dr Ranjan.

She had horrendous headaches. In the end it turned out they were caused by an old whiplash car injury which had happened many years previously.
Her spine (or something like that) wasn't as it should be.
In the end targeted physio massively helped.

Maybe it's something physical with your back ?

Please please go to the dentist

it sounds like TMJ

and the more the headache builds the more you clench your teeth, which in turn increases the headache.

its likely to easy if you sleep for long enough as you have your mouth guard in which is protective for the tooth grinding.

find a private dentist, someone really good who specialises in TMJ and at least get it ruled out

If its not that, get your thyroid, parathyroid, calcium, ferritin, iron, B12 and Vit D checked

And also you need a head scan, MRI or CT

I hope you can work it out

And to answer the q in your original OP - I would say all points perfectly describe migraine, with the exception of "The other thing that makes the head so much worse is lying down"

This is a symptom that a headache specialist/neuro would want to ask about further, so will echo previous post that you should see someone at the National Migraine Centre ASAP.

All the other features - throbbing, worse when bending, irritation, light being painful etc are classic features of migraine. I know how horrid it is

You need an ENT op,

Ask to be referred, go private if you can afford to.

Are you stuffy at all?

Could be TMD? I'm going through it now and I'm in the process of getting my first mouth guard made. The headaches are always around my temple and eye area and they feel like someone's pushing my eye out. I get a lot of sinus stuffiness with it too, and lots of crackling sounds in my ears. I find that I am constantly clenching my jaw so it's always sore, not just as a result of clenching in my sleep. If you get tender cheek muscles with your headaches it could be TMD. A dentist can help with that. Good luck!

A tooth clenching headache would normally start bad in the morning and wear off throughout the day, rather than the other way round, so I think it's likely to be another cause.

I think it sounds like migraines too. I’ve suffered for years until I accidentally bought some ibuprofen lysine instead of the normal one and it is actually effective at stopping the migraine pain.

Another tmd suffering tooth grinder here -
deffo see a dentist if you can and mention it

Will add - to me it doesn't sound like cluster headache.

A good way of telling the difference is what you end up doing when have the headache @Fedupwithallthis2

Do you want to stay as still as possible (migraine) or do you want to pace around (cluster headache) ?

Hi, I haven’t read the whole thread so this might have been mentioned already… it sounds like I was going through something similar, and the pain eventually became like a cross between intense sinus pain and a strange sensation in my temples, like pushing a gel pad, which made me feel sick and dizzy. Had blood tests, GP told me to start taking Vit D, I was 🙄but did what she suggested. Headaches have gone now, so has the crushing tiredness.

Definitely keep pushing for answers, I still can’t quite believe that’s all it was in my case, but it might be worth a try in the meantime.

Which medications have you tried? I have migraines, which feel a lot like you describe - no painkillers touch them, but triptans do help a lot. Have you had sumatriptan? If triptans don’t work, I’d definitely be going back and asking for more investigations.

DD had this a few years ago. I tried EVERYTHING you've tried and far more. She was off school for weeks. MRI scan was thank God clear so I was able to breath a bit easier..

Then I found a post on a forum somewhere describing exactly the same symptoms and saying she started giving her daughter daily iron tablets and it worked. It worked for DD too but this does not mean it will work for you - however it may be worth getting your iron tested just in case.

You must feel miserable

Please listen to the medics on here, it sounds absolutely awful, and it definitely sounds like it warrants further urgent investigation. You poor thing.

Sinuses. I had something very similar for a couple of weeks. It was the worst headache I've ever experienced. I thought it was my new phone, eyesight deteriorating etc but it wasn't. It was a sinus infection. It has finally cleared after two different sets of antibiotics and steroid nasal spray. Definitely worth asking your doctor if it could be this.

This sounds eerily similar to my DP.

Turned out to be a brain aneurysm. It was bleeding slowly causing the headaches etc.

You need a CT scan ASAP

Sinus wash: messy but brilliant