Chronic headaches / eye pain / neck pain / back pain for three years. Please help

[ChronicallyPissedOff]

Approx 3.5 years ago I started getting pain in the base of my skull where it meets my neck. I had facial pain along my cheeks around that time and after talking with my dentist he suspected TMD. He referred me to oral surgery where I was diagnosed with the TMD and a disc issue on my right side (?) and I've been seen by them every 6 months or so ever since.

I've had 2 rounds of botox with them, mouth guards, muscle relaxants, physiotherapy, noritryptiline, naproxen and nothing has worked. I've given myself gastritis from taking so much ibuprofen and naproxen for so long and really buggered up my stomach. Even codeine does nothing for me. They've always been baffled about the head/neck pain and don't think it's related to my jaw.

The pain has only got worse over time and it now affects my eyes and temples. I get nausea and dizziness when I tilt my head up. When the pain in my head and behind my eyes is at its worst I can be physically sick from the pain. At this moment in time it feels like somebody has taken a hammer to the back of my head!

I also have a constant upper back pain now and a burning pain in my right shoulder that comes and goes. These symptoms have developed the longer the head pain has gone on.

All of this is more or less constant and getting worse. I might have 3 or 4 'good' days a month where the pain is less intense, but its always there.

I've never had an MRI, scan or other more in depth investigations and feel as though ive slipped through the cracks. How can somebody presenting with daily severe headaches for years not need an MRI?

Over time I've done some research of my own and wondered whether I may have occipital neuralgia aswell as I'm not a textbook TMD case. I do have TMD but that clearly isn't all that's going on. There are multiple other possible diagnoses but none have been looked into yet despite oral surgery agreeing that all of my symptoms aren't TMD.

After breaking down in tears to a locum GP he made a referral to neurology which was then rejected as they wanted the referral to come from secondary care (the hospital I'm under) for the sake of continuity. I'm now going to have to wait until the end of October when I'm there again to ask them to make the referral.

Does any of this sound familiar to anyone?

Could anybody hazard a guess as to what's actually going on?

I know nobody can diagnose on the Internet but I'm starting to worry about things like a brain tumour.

I'm at my wits end. I have young children and I'm really struggling with this. Every day is just so miserable

You need an MRI. I had similar symptoms, including facial and arm pain. It turned out I had a prolapsed neck disc (C5/6) which was also causing cord compression and needed surgery.

Hope you manage to get a diagnosis, it's absolutely miserable

I have Occipital Neuralgia and i wouldn't wish this on my worst enemy. I have lots of the symptoms you describe and I have Occipital Nerve Blocks for the pain. I also have Botox for Chronic Migraine too. The Occipital Nerve Block has been a lifesaver for me. At times i felt like my head was too heavy for my body but i am able to move my head a lot more freely now. I am under a pain management clinic and they are also going to start with some therapy to help cope with the pain as they don't think i'll ever be pain free but i'm hoping i carry on feeling a bit better. I would definitely keep pushing and chasing your referral you can't carry on like this is debilitating x

Also, I completely agree you definitely need an MRI too

Thank you for the reply, I'm sorry you've had similar but it's really encouraging to know you found the cause and it was treatable!

I agree about an MRI, I have been wanting one for the best part of two years. When I've mentioned It to oral surgery they just keep kicking the can down the road by saying we'll see how I get on with (each of the above mentioned treatments) first. Last time I was there earlier in the year I asked again for an MRI/scan and was told we'll see how you're getting on in another 6 months after this second round of botox.

The botox by the way, is only ever in my jaw. I don't see how that is going to help the crushing pain in the back of my head :(

I've been looking into occipital nerve blocks this past few weeks! Am I right in that it's also used as a diagnostic tool?

GP said I would have to get one via neurology (or a pain clinic which isn't even on the cards at the minute.. bizarrely)

I've had ACT therapy to cope with the pain, I'd love to say it helped but unfortunately it made little to no difference for me. I might not have absorbed much of the information though as I was always in so much pain during the sessions it's kinda hard to concentrate.

Head feeling too heavy for my body definitely resonates with me too. I'm really sorry you have to deal with all of that.

Would your GP refer you for an MRI if you insist? It's awful that you're suffering like this, and still have no diagnosis.

I'm not sure to be honest. I have a feeling the referral will be rejected as per the neurology one the GP sent off. It's frustrating as they like the referrals to come from secondary care but in my case the secondary care aren't doing the things I need them to eg an MRI or referring me on.

It might be worth me trying I guess.

I've been close to going to A&E a few times.

I’m so sorry you’re having to deal with this too. I started with very similar symptoms around 30 just after having my second child and wondered what on earth was wrong with me. It took more than two years, and lots of tests later, to be diagnosed with fibromyalgia and it is just awful. I have learnt to control it better but the pain in my neck is the worse thing I’ve ever experienced. I also have TMJ/TMD and persistent migraine with aura.
Physio therapy does help and I couldn’t live without biofeeze gel. Wishing you the best of luck xx

Coincidentally all of this started shortly after I had my third baby. I also get (albeit only occasionally) episodes of aura that last 20-60 minutes and really throw me off kilter.

I'll definitely look into fibromyalgia, it isn't something I ever considered or even know much about.

I'll get hold of some biofreeze gel too. At the moment I'm going through two £6 tubes of nurofen gel every week and I'm not convinced it does anything at all. I get 5-10 minutes of relief from deep heat but that's probably only because it burns so much it takes my mind off the other pain 😐

I forgot to add, something that may or may not be relevant is that I was in hospital for a fortnight with sepsis after having baby #3 and all of this started shortly after that. Probably unrelated but something I definitely mention to any HCP's I see.

I've just looked up fibromyalgia and it says it is known to start after a stressful event like an injury or illness.. Well that certainly fits.

I’m exactly the same, always had TMJD, have issues with my whole jaw/head/neck area all the time for 25+ years, had bouts of trigeminal neuralgia a few times too. I had an mri about four years ago because I kept getting dizzy and feeling like my head would explode when I moved, which diagnosed arthritic changes in cervical area, but no treatment plan. I just get on with it. Any change in my daily life flares it up. If I change my bra style, sleep away from home, get a new chair at work, move the seat in the car, it flares up for weeks. Currently in a flare up because I didn’t fold my pillow the right way. 🙄 I have a plug in heat pad that really helps.

Without a doubt you need a head and neck mri. Where are you? You need a referral to a complex headache clinic too

What @pinklillie said. I too have occipital neuralgia. Jesus its awful but it took so long to get diagnosed. Your description matches mine almost exactly. The nerve block is diagnostic but once it confirms ON you can get it every 12 weeks or look at ablation or nerve rhizotomy.
You need to find a pain specialist- mine does them in his office - £120 a pop but insurance covers. Prob going to get the rhizotomy next if needed. My pain is mostly managed now. Naproxen was shit. Am on Amitripyline now but gonna come off it as its not helping. Once my pain reduced I started back to yoga which was superb. Please DM me if I can help in any way with Q as I have had it for 4 years.

It sounds like something shifted in your body during birth.
I totally believe that can happen.
After my third was born, I felt different (hormonally) but people just say it's just part of having a baby.
Have you seen an osteopath or chiropractor or physio?
Have you had X-rays on your spine and neck?
Can you pay for an MRI or is that not possible?

Agree that you definitely need an MRI. Have you looked into Chiari malformation? I have that and it can cause the most painful headaches/pressure. Not many doctors seem to know/care much about it though. I hope you can get some answers soon, it must be awful having to cope with such pain with no answers.

Please don't let anyone manipulate your head/neck at this stage. Who knows what is going on until you've had an MRI.

Private will be difficult as I just don't have alot of money coming in but I'm contemplating perhaps a loan as it seems throwing money at it is the only way anything gets done in a reasonably time frame.

I've seen two different osteopaths in the past few years. The first one was under the proviso that it was just TMD I had so very early on. I had two sessions with her but each one left me in agony and I couldn't go back.

I saw another osteo again recently, this time at an approved school for osteopathy, so it was much more thorough and dare I say professional. I told them I was thinking I had occipital neuralgia and their thinking was that I do indeed seem to have occipital neuralgia, along with the confirmed dx of TMD but also potential osteoarthritis in my neck. They don't work hand in hand with the GP or hospital though so can't formally diagnose anything and I can't go anywhere with that but I'll mention it to neuro whenever I do finally get to see one.

I've been looking into fibromyalgia and noted that sufferers also report having bad PMS alongside TMD. I developed horrendous PMS/PMDD after that difficult birth which seemed to trigger all of this - so I've made a note of that as it was never something I dealt with before. The more I read the more it fits.

Chiari malformation is also something I'm going to ask neurology to look into or rule out

I have been trying to post this al day but my toddler had other plans!
I know that Occipital Neuralgia is treated by different teams in different areas. I used to be under Neurology before we moved and now it falls under pain management. I would go back to your Dr and tell them exactly what’s going on and that you need some urgent help and they should be able to find out the best referral. I also saw a Chiropractor but I found this made my head and neck pain worse. I am seeing an Osteopath this week. Do you take any medication at all? I found a combination of heat and cold helped get me through some days. I have a migraine cap which is full of ice blocks and you pull it on over your head right down to the base. The heat pad i have is a plug in one shaped like a hot water bottle and that moulds to my neck. I also have a heated cape that plugs in and wraps round your neck and eases neck, upper back and shoulders. Who can authorise the MRI? I would ask your GP to get one asap as that may determine who you need to be referred to. I feel for you going through this too. There is an Occipital Neuralgia UK facebook group too that you may be able to search and find out details of Specialists in your area. Weirdly I was diagnosed with PMDD after the birth of my son and my pain issues have certainly flared up. I wonder if it is a hormonal issue too!

Migraine Cap

Headache and Migraine Relief Cap - A Headache Ice Mask or Hat Used for Migraines and Tension Headache Relief. Stretchy, Comfortable, Dark and Cool (by Magic Gel) amzn.eu/d/6bqf2db

Heat Pad

Beurer HK44UK Heat Pad | Soft and cosy electric heat pad | Rapid warm-up function | 3 electronically regulated temperature settings | Machine-washable | The NEW-AGE hot water bottle, 50 x 30 cm amzn.eu/d/gfddWpN

Neck Cape

Hangsun Heat Pads for Back Pain Relief Electric Heating Pad with 6 Temperature Settings, Auto Shut Off, Overheating Protection - 32"x25" amzn.eu/d/8rq1Qrv

Neck Pillow (forgot to mention this. it's awkward to get used to but does help with sleeping posture)

Elviros Cervical Contour Memory Foam Pillow for Neck Pain Shoulder Pain, Orthopedic Ergonomic Neck Pillow with Arms Rest for Side/Back/Stomach Sleepers with Removable Cover (Dark Grey) amzn.eu/d/1qMstXj

Thank you so much for the links, Pinklillie 🙂

AFAIK my GP would be able to refer me for an MRI but the problem is the hospital accepting it as once you're under secondary care like I am with oral surgery, other hospital departments tend to reject referrals from GP and ask that it comes from the secondary care department for the benefit of continuity.

It's really interesting to me that you was diagnosed with PMDD and the pain issues after your birth too. Nothing prepares you for just how much having babies can mess up the system. I didn't have any of these issues before DD and now I have so much crap going on.

I'm a side sleeper, would that pillow still do its job or must you stay flat on your back? It looks really good and I do like a memory foam pillow.

I joined the occipital neuralgia group on Facebook a few weeks ago and have posted there before so you may well have seen me there 🙋🏼‍♀️

No problem at all. I hope some
of them help you.

I started with issues whilst I was pregnant and was diagnosed with Idiopathic Inter-cranial Hypertension which causes severe head pain and issues with vision as the CSF surrounding your brain is producing too much and it basically feels like a lot of pressure crushing in your skull and optic nerves.

This was diagnosed by MRI as they were concerned it could have been a tumour as it causes similar symptoms.

As much as i'd be tempted to pay privately for a scan in your situation I do feel if you stay within the NHS you will get sorted out it's just a case of getting through this red tape first.

They gave me numerous nerve blocks whilst pregnant as I wasn't able to take any of the medication that would help and it did get me through but it was a nightmare trying to get the same treatment when I moved.

Do you have anyone that could go with you to the Drs and advocate with you? I get so tearful on my appointments as it's so hard feeling you aren't being listened to.

In regard to the pillow you can use it on the side and it has space to put your forearm and hand too x

@ChronicallyPissedOff how are you? Any updates?
ive been the same! Just before getting pregnant! They wasnt sure if i had ON or trigeminal neuralgia. I pushed soo hard! And when i went to A&e one day and made sure they got me a mri! I had enough! Its soo rubbish! Its been nearly 3 years, i tried everything! I found amitriptyline helped me but nortriptyline didnt. Im not seeing a new chiropractor, hoping it
will help. I really hope your feeling abit better xx

@pinklillie what symptoms was you getting with that? X

sounds daft but have you had an eye test? I have Idiopathic Intracranial Hypertension and, although my symptoms can come and go, when it’s really bad my symptoms sound very similar to yours. I’ve ended up in hospital with it and was found after an eye test.