Let’s talk headaches : I have the worst pain going... - LUPUS UK


28,590 members24,855 posts

Let’s talk headaches

Buckley123 profile image

I have the worst pain going from my neck behind my ear to my head like a shooting electric shocking pain into my head making my eyes slightly blurry and hot neck two days now it’s not getting any better

Any thoughts ? Xx

47 Replies

Have you ever tried feverfew? I went through a period where i had severe migraines and i was recommended to take this and found it of help . It is worth checking that it doesn’t interact with other meds you take as it has an anti inflammatory effect.

Thanks 🙏 I will give anything a go xx

Is it a continuous pain or a set of random shooting pains?

I experience the latter occasionally, but have never managed to properly isolate what causes them. I think the ones are get are referred to as ice pick headaches.

I will watch this thread for suggestions.

Thanks for your reply set of random shooting pains but mainly in the same place same side of the head xx

I get random shooting pains from back of ears up the side of my head. They make me feel sick and if I’m feeling poorly they trigger anxiety because I think I’m about to die 😮

It once triggered a panic attack, that was the worst feeling ever.

Still my brain scan was ok so I’m confident it’s nothing sinister maybe a nerve? X

Buckley123 profile image
Buckley123 in reply to Lisalou19

Yeah maybe although my brain scan showed inflammation however I’m not too worried about it but I had a constant headache 🤕 dull one for a week and then these shooting pains after for two days so far so it’s getting annoying my skin is burning hot too xx

Lisalou19 profile image
Lisalou19 in reply to Buckley123

Does the skin look hot or feel hot?

Sometimes inside my body it feels like New Year’s Eve fireworks 😅

I think I’ve gradually got used to some of the strange going’s on.


Buckley123 profile image
Buckley123 in reply to Lisalou19

Feels hot 🥵 xx

Lisalou19 profile image
Lisalou19 in reply to Buckley123

Have you done your temperature?

My skin will at times feel hot but it also looks hot.

That’s my clsssic rash , burning red hot . X

Buckley123 profile image
Buckley123 in reply to Lisalou19

No I’m wondering if I have a infection my bladder seems to be hurting a lot have a appointment at the gp in a hour see what they say xx

Buckley123 profile image
Buckley123 in reply to Lisalou19

The next doctor who says it’s just inflammation I going to scream 😱

Lisalou19 profile image
Lisalou19 in reply to Buckley123

What type of inflammation are they saying it is? X

Buckley123 profile image
Buckley123 in reply to Lisalou19

They are not that’s the problem just that it may be inflamed as it’s painful 😖 it no infection .. xx useless basically x

Lisalou19 profile image
Lisalou19 in reply to Buckley123

I generally find that’s the case when they just don’t know although I find my doctors do listen .

Is this your skin that’s inflamed or your bladder? X

Buckley123 profile image
Buckley123 in reply to Lisalou19

Bladder xxx

Lisalou19 profile image
Lisalou19 in reply to Buckley123

Oh I see. I get the inflammation frustration now

I’ve got urologist end of September. I’m convinced my bladder suffers during flares

Not had any infections myself x

Could be inflammatory nerves. They need to be calmed down. Honestly it’s usually holding your neck a certain way too long awake or asleep.

Again I’m going to occipital neuralgia.

I am on low dose Aspirin since May when I was diagnosed with APS. Since then the frequency of my headaches decreased significantly. Hope it helps!

Buckley123 profile image
Buckley123 in reply to corinusha

I have been told to take aspirin but it’s confusing dr kaul said too dr de Cruz didn’t mention it and my aps results are negative 👎

Uctd they think

But my Nan has aps xx

Roarah profile image
Roarah in reply to Buckley123

APS negative is thumbs up! You are young for Asa treatment if vascular risks do not merit it so ask both doctors for opinions.

Roarah profile image
Roarah in reply to corinusha

I was on plavix with 375 aspirin for months and my headaches too subsided. They have since put me on plavix and warfarin and my tension headaches have since started again. I am working with my hemo and cardio to get the plavix changed to aspirin but due to my age, I am 50 and they prefer using plavix for long term treatment because less serious stomach bleeds are seen. But I miss the anti inflammatory effects aspirin provided. My knees and hips hurt more too now that I switched from Asa to warfarin.

Inflammation is believed by many to be the cause of most illness and disease not a result of, Buckley, so it is not " just" inflammation. You need to visit ways to reduce this inflammation. Talk to your team as to how best to treat your inflammation. Pharma ideas to discuss are Steroids for kidneys and joints, aspirin and plavix for vascular risks, ssri's and Celebrex reduce brain inflammation and that is why they work so well for fibromyalgia, depression and headaches.

Non chemical options to reduce inflamation while waiting for the doctor to perscribe a treatment work really well. An anti inflammatory diet, exercise and meditation all are proven to reduce overall inflammation too.

I use a headache mindfull video by the honest guys daily. It is quick and includes general head movements to loosen the neck. Pain behind the ears or on the top of our scalp is often nerve aggravation from neck tension.

Hope you feel better soon.

Buckley123 profile image
Buckley123 in reply to Roarah

Thanks roarah

I know it is but you know when you just want to have a answer for it all and a plan so you can start to get you life back 🤦🏼‍♀️

I have three kids and constant pain one way or another.

Your right I’ve fallen off my gym plan and eating healthy I need to kick myself up the butt again xxx

Do you use a mobile phone? Do you have a smart meter? Are you near a mast? I get your symptoms with all these when in near proximity and I am dreading 5G and the effects on all our health when there is so much evidence of damage and not one research to prove it is safe.

Barrie Trower worked in the military with microwaves, see



Physicians Health Initiative for Radiation and Environment


There is an on-line 5GSummit on the 26th August with speakers each day for a week. The link for this is:




Environmental Health Trust - EHTrust.org


articles.mercola.com/sites/... – 5th June 2019


Emfportal.org bioinitiative.org phiremedical.org Appel-de-paris.com 5Gappeal.eu

Bioinitiative.org Ehtrust.org Emfcall.org Emfscientist.org Saferemr.com Orsaa.org

Wirelessriskassessment.org Mdsafetech.org



5G petition sites government petitions petition.parliament.uk/peti...


Research EMFs

Do you have a degenerated disk in your neck?

Buckley123 profile image
Buckley123 in reply to JennaShi

Nope mri was clear in the neck only inflammation in the brain I have a lot of issues with my neck tho muscle wise very tight and sore xx

maye1 profile image
maye1 in reply to Buckley123

I was thinking the neck too. My MRI shows brain inflammation also neck herniated discs. I get sane headaches you get. Shooting pains and burning are Neuro. Every doctor I’ve seen has said - no connection to your spine. Funny reaction from virus because of Lupus/UCTD. Inflammation affects blood vessels etc.

I agree with inflammation but I know symptoms also related to spine so I’ve started treating my neck. And lumbar. It’s helping.

UCTD affects ligaments that hold all your joints in alignment including vertebrae. Which affects blood in and out of brain. Also the dura mater which holds your CSF.

I’d be curious when your last MRI was. Also be aware with disc degeneration - laying MRI’s are not as accurate as standing.

Maybe no connection to your symptoms but thought I’d mention it.

Hope it gets sorted out soon. Xx

Buckley123 profile image
Buckley123 in reply to maye1

Thanks maye1 sounds we are in similar boat

How are you ?

Yes ligaments make sense

Sometimes my neck is so tight I can hardly move it other times it feels so heavy? Do you het this too ?

My mri was only on the 5th of this month I’ve had my results already and neck is still clear same as last scan

Did yours ever change ? Can I ask what kind of treatment you received ?


Jade x

maye1 profile image
maye1 in reply to Buckley123

Hi Jade,

I’m good, thanks. My situation might be different so I’ll give you the summary and you let me know if there’s similarities. I was dx’ed 9 years ago Lupus. Recently it’s been switched to UCTD. Joint pain and fatigue but all manageable until 1.5 years ago. Aura migraines x 2 weeks. But I “ignored” and kept going to the gym, lifting weights. Woke one morning and my balance was so off I needed a cane. Parenthesis. EMG normal. Making progress with Plaquenil but balance improvement has been excruciatingly slow. VRT exercises. What was odd about it was that my head felt really heavy. Disc herniation to the left and tighter muscles on the right - like they’re working to hold my head up. Also was having these “jerks” from my neck like my head was bobbing. Also the elec shocks like you described. ED, Neuro, Rheum all said virus. But they also all said the surgery could be a good idea but risky and only urgent if I lose more function. They just don’t do C spine surgery in Canada.

I watched a documentary by a women with chronic fatigue and she tried an out of the box solution - neck vertebral fusion. I think her name is Jennifer Brea. The step before that though, from my research, is prolotherapy. Ligaments are injected. Tightens them. Takes the load off the muscles which are trying to compensate for lax ligaments. I like the idea because it could be a fix. Not for everything but if I can regain more balance I can be more active. I was using a cervical traction collar for about a year. Helped but didn’t fix it. My balance is already improving. Neck jobs have stopped. Im shocked by it. Pricey but if it works I’ll pay anything. Maybe placebo but that’s fine. May not work for other people. Too me - it never made sense to have multiple herniated discs at 41 when I’m underweight and don’t do any heavy lifting. I also started collagen supplements. And silica which is a precursor to collagen. You have to be careful with silica because too much leads to toxicity so I’d talk to your dr about that first. I’m a nurse and a nutritionist and I know what to watch for and the risks so I’m ok with some self treatment measures. System told me there’s nothing more they can do unless I worsen so - I look for what I can do on my own.

Let me know if any of it sounds relatable. And again this is just what’s helping me not promising it could work for you.

Buckley123 profile image
Buckley123 in reply to maye1

Thanks maye1 yes mine doesn’t sound as bad as yours although very similar symptoms

I too have lupus like uctd they think not fully diagnosed yet

I have neck issues that come and completely go

Neck jerking neck bobbing this seems to have subsided for now anyway.

Electric shocks I get them in my neck also.

My head can feel heavy and tight muscles like my head is too heavy also.

Dr d Cruz found neck weakness and shoulder flexor weakness and stricken hip weakness also

My hips are just as bad worn joints liberal muscles tears and bulging discs in my back but my neck was clear according to my neurologist.

I too have joint pain and muscle pain along with tiredness and a few neurological symptoms

My neck has played me up a lot to be honest.

I have inflammation thought the Oesophagus and lymph nodes in my bet scan so maybe this can explain a bit.

I’m glad you are feeling better

I too go to the gym and lift weights 🏋️‍♀️

But I have been told to stop ✋


maye1 profile image
maye1 in reply to Buckley123

Hey Jade,

I’m sorry you’re dealing with all this. I think the hardest part is not knowing and being told by physicians in regards to why we have certain symptoms - Lupus is funny! I’ve heard that a lot. Keep pushing and when they say there’s nothing they can do, find a way around the obstacle.


Buckley123 profile image
Buckley123 in reply to maye1

I will do thanks Maye1 I appreciate your advice a lot I will of course keep up the good fight.

I’m seeing guys for all bloods a week today so all is not lost and we should be able to get to the bottom of it I wish you well xx

I have a piercing pain, left side of head which goes to top. Left side of face tender to touch. Temple very sensitive. Scalp sore to touch or brush hair. Cold air blowing on head from AC in house hurts or air hitting face sometimes. Google trigeminal neuralgia. Waiting on numerous blood test now. Normally you have to go to a vascular surgeon with about an inch cut above temple for a biopsy to prove you have this. My left eye tears, if I cough I have to push in on left ear an side of head with one hand an hold head with other. Pain comes from nerve in back of head/neck an goes up. Then it can shoot through temple. This disease can lead to blindness. My rehumitologist is helping, been sent to neuro, an he said vascular. Hope this helps.

Buckley123 profile image
Buckley123 in reply to Sweetnlow

Sounds similar sorry you have this too I’m hoping it’s going to go one soon xx

I have spurs on my neck, fibro, bad disc in back but docs seem to think its trigeminal neuralgia

TN will slam pain in your face. Occipital neuralgia will take it from your neck or behind your ear and if really bad ends at the orbital notch above your eye on the same side. (That’s the little bone dip located usually in your eyebrow.)

I agree! TMJ is painful. I've been wearing a device on upper teeth in case I grind to keep inflamation down. ENT doc thought that was what could be hurting me. Doc pushed on left muscle in mouth that's under ear an it hurt bad. I have had three CT's. But that's not it. Wishing all of us were well! 😊

Sweetnlow profile image
Sweetnlow in reply to Sweetnlow

Heat is the only thing that helps me and of course two 650 tylenol! Cant do ibuprofen.

IF it is occipital neuralgia heat feels good while it’s on but heat brings blood and plasma to the tissue making the area for the nerve to calm down smaller. So while it’s on there it feels better but can actually prolong the pain. IF it’s a pinched nerve heat probably does help. Of course everyone reacts differently and I’m just giving the most common course of action for the symptoms described.

Thank you for the Info. It's truly appreciated.

I broke two teeth with a guard. Stupid jaws.


Sounds like occipital neuralgia. Try ice for 15 minutes off and on behind your ear to calm the nerve and anti inflammatories if you can take them. You have to stay at it. Behind your ear is the lessor occipital nerve. At the bumps on the back of your neck is the greater occipital nerve. Also a lidocaine based cream in that area when you aren’t icing will help calm it. It can take hours to days to calm it. Absolutely no heat. Tell your doctor what you’re doing.



Don’t read the diagnosis part. We generally have it because life is full of anxiety and we have dry mouths so we hold our jaws tight.

Thanks Neronerd much appreciated it does sound like optical neuralgia

I’ve had a constant dull headache over a week and now this electric ⚡️ stabbing pain for a few days now I fee generally quite unwell atm too xx

It will do that because eventually it will mess with your vagus nerve. We try to stay away from that. Rest. Eat gentle foods or broth. Hydrate. Cold packs. Tell your doc.

Thanks I will do x

You may also like...