Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

Original poster

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

52 replies

ChronicallyPissedOff · 02/09/2022 23:06

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

OP posts:
pinklillie · 21/01/2023 11:06

Starrr123 · 20/01/2023 22:22

@pinklillie what symptoms was you getting with that? X

Do you mean generally or for a specific condition?

Starrr123 · 21/01/2023 11:09

@pinklillie with the high pressure? Xx

Fizzadora · 21/01/2023 11:13

Sounds exactly like my migraines. I suffered with constant low grade and regular (every other week - short cycle) pain from age 16 to about 40. New GP suggested daily Propranolol and Sumatriptan for when it hits which fixes it for me, as long as I take it before it gets to my ear.

Interested in this thread?

Then you might like threads about this subject:

General health
Fizzadora · 21/01/2023 11:21

Fizzadora · 21/01/2023 11:13

Sounds exactly like my migraines. I suffered with constant low grade and regular (every other week - short cycle) pain from age 16 to about 40. New GP suggested daily Propranolol and Sumatriptan for when it hits which fixes it for me, as long as I take it before it gets to my ear.

That should have said regular high grade often debilitating pain every other week. I remember driving to work at times, in tears thinking that my head was going to snap off my neck.

WeAreTheHeroes · 21/01/2023 11:21

I'm wondering if the OP has chronic migraine or cluster headaches. There may well be something physical going on too. Ridiculous she hasn't had an MRI scan and that when was being arranged it was cancelled for being via the wrong route. What do women need to do to be properly, effectively treated?

JuneOsborne · 21/01/2023 11:25

So, there are loads of options as to what's going on. You need some to connect up the dots for you. A scan is a must.

I have had something similar, but no where near as bad. Migraines with aura. Weird arm pains. Like my upper arms were too heavy to lift and they were agony. And a couple of other things going on.

I saw a neurologist who was really thorough. Had a head and neck MRI.

He diagnosed cervical migraine. He said the very best thing I could do was to sleep on one or no pillows. It took some getting used to, but it's definitely helped. That and a course of topirimate as a preventative. The side effects were pretty grim to begin with and seemed to take ages to settle because of the way you take the medicine, increasing the dose week on week until you get to the actual dose. Then I had to take them until I was 12 weeks symptom free (no aura was defined as migraine free). Then you want off the same way you work up to the max dose. The course was almost a year. And I've been off them for 4 years now. Instead of 2/3migraines a week, I get maybe 2 per year now.

I think you need to be a bit more insistent that these 6 month stop gap treatments aren't helpful, that you want the scan, and you need more frequent appointments so if something isn't working, you change yo something else sooner.

It sounds horrendous for you. I hope you get answers and solutions soon.

Starrr123 · 21/01/2023 11:52

@JuneOsborne hi!
im going to try the 1 pillow!
what symptoms did you get on the topirimate? Mine all started from high levels of stress, and then i got pregnant and got worse with covid…
ive had a neck mri and the neurologist said just wear and tear. Im so lost what else i can do. A chiropractor said my body is really out of line! X

pinklillie · 21/01/2023 11:53

Starrr123 · 21/01/2023 11:09

@pinklillie with the high pressure? Xx

Oh Ok sorry I didn't read that properly.

The feelings of high pressure for me is my head feeling like it's being crushed in a vice and generally heavy head feeling and painful base and neck area. I also have a pounding headache and then pulsatile tinnitus which is a pounding noise in your ears but it's so loud and it really feelings like someone is slowly torturing you as there is no break from it. My eyes feel like i'm looking through a filter that shows a black and white snowy standby screen you used to see on TVs and then I also get a blacked out greying areas around my peripheral vision.

Have you got anything like that?

Starrr123 · 21/01/2023 11:58

@pinklillie thankyou for explaining !

i get awful neck pain, eyes are full of floaters. I have alot of after images if i look at bright things. I also have tinnutis, but mine is like ringing /electrical. My head always feels fuzzy! I never have energy! I had a brain , neck and spine mri! I saw an eye specialist and nobody knows whats wrong x

Thatboymum · 21/01/2023 12:34

Like another poster mentioned this is similar to me and I also have idiopathic intracranial hypertension and chiari malformation, people do not understand the condition at all and just assume it’s a head ache when it’s really so much worse it’s ruined my quality of life. Push for more testing op

OnlyTheWeedsGrow · 21/01/2023 12:44

I also have Chiari, and your description sounds very familiar. It can only be diagnosed via MRI, and with a knowledgeable radiographer/neurologist. You need a cervical/head MRI asap. If it is Chiari, please ensure you get a full spine MRI before any further discussion of treatment (surgery), as any tethering of the lower spinal cord needs to be diagnosed first or will negate the effects of the surgery.

pinklillie · 21/01/2023 12:47

Starrr123 · 21/01/2023 11:58

@pinklillie thankyou for explaining !

i get awful neck pain, eyes are full of floaters. I have alot of after images if i look at bright things. I also have tinnutis, but mine is like ringing /electrical. My head always feels fuzzy! I never have energy! I had a brain , neck and spine mri! I saw an eye specialist and nobody knows whats wrong x

When was your last MRI and appointment with the eye specialist?

Did they do an OCT test? If it is anything resultant IIH they can pick this up at the opticians with the OCT test looking at the back of the eyes. The optic nerves swell causing visual disturbances and this is a sign of high pressure

Starrr123 · 21/01/2023 12:48

@Thatboymum how did you get diagnosed? X

Starrr123 · 21/01/2023 12:50

@pinklillie my brain mri was dec2020 after 3 months of symptoms starting.
eye specialist i saw about 7 months ago, i worked at the opticians at the time. I had the OCT done a few times. All ok, optician was saying optic nerve looked very healthy x

Philomenacunk1 · 21/01/2023 12:51

I’ve Suffered with severe TMJ as well which resulted in eye / temple pain. The clenching of my jaw muscle was causing refracted pain. I have Botox for it and she injects my temples as well as the jaw muscle, which really helps.

pinklillie · 21/01/2023 12:56

Starrr123 · 21/01/2023 12:50

@pinklillie my brain mri was dec2020 after 3 months of symptoms starting.
eye specialist i saw about 7 months ago, i worked at the opticians at the time. I had the OCT done a few times. All ok, optician was saying optic nerve looked very healthy x

Well that's a relief then. I would continue to push for answers x

Starrr123 · 21/01/2023 13:02

@pinklillie i have and they are saying its stress and tension. I dont know what else to do. Ive spent thousands on acupuncture etc x

pinklillie · 21/01/2023 13:08

Starrr123 · 21/01/2023 13:02

@pinklillie i have and they are saying its stress and tension. I dont know what else to do. Ive spent thousands on acupuncture etc x

Oh it's infuriating isn't it. My issues were put down to anxiety or because i'm overweight Angry

Have you ever seen an Osteopath? i've recently started seeing one and they focus on everything. Sleep, Body, Nutrition and can give pointers on who else can help with different things.

If for example it's some kind of tension in your neck and shoulders that can be eased off which could help your head for example x

Starrr123 · 21/01/2023 13:11

@pinklillie that must of been awful for you when you actually had something wrong! How did they treat it?

i have seen an osteopath and it did help actually. Life got busy and i went a few times then i stopped. Im currently seeing an osteopathic/chiropractic person! And its a very good clinic, and i found out that my dr can refer me so ill get 6 free sessions! I paif £60 and then ill pay for monday then ill get the others free.
they always blame it on anxiety, ive always been a very anxious person. But i never had these weird symptoms……
x

Growfish · 21/01/2023 13:20

Are your headaches worse at night or in the mornings? And did you have a spinal during childbirth? Does caffeine make your headache worse or better? I am wondering about Idiopathic Intracranial Hypertension (high pressure) or Spontaneous Intracranial Hypotension (low pressure) as well

Starrr123 · 21/01/2023 13:23

@Growfish i have spinal during my labour. Headaches were AWFUL after for months. But i also lost soooo much blood! I was anemic for a year and drs said i was on x

comfyoldcardi · 21/01/2023 13:27

Your GP could write to the hospital and ask for your appointment to be brought forward. Maybe that would persuade them to expedite further investigation.

Thatboymum · 21/01/2023 15:15

@Starrr123 i had been going to the gp for 2 years with all the symptoms and fobbed off as fibro but then my eyes started going so I saw optician who saw papilodema and sent me straight to hospital where I had lumbar punctures and an mri and it was diagnosed that week x

Starrr123 · 21/01/2023 15:46

@Thatboymum did you go to the optician when the symptoms started?
ive had my eyes checked about 4 times and they say all normal xx

Thatboymum · 21/01/2023 19:43

@Starrr123 no I didn’t as my eyes were fine initially I wish I had tho, the consultants think I got this from covid or the jag but who knows