Sharp pains in head - lupus related or something ... - LUPUS UK

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Sharp pains in head - lupus related or something else?

Treetop33 profile image
16 Replies

Hi all,

I have general nerve pain in my head ever since I had concussion and whiplash seven years ago - so I'll get fibromyalgia shoulders and pains travelling up my scalp, particularly the right side. It's not that troublesome. But since I had my Covid jab three weeks ago I've had a few episodes of stabbing pain at the top of my head, and yesterday I felt a little nauseous and mildly dizzy. It's accompanied by severe tenderness in my fibro shoulder.

I take clopidogrel (anti-platelet) every other day, hydroxy and 5mg prednisolone.

I've booked into see the doctor today, but it always helps to be informed before I go. Anyone else experienced this?

Ta!

UPDATE - this developed into a respiratory virus. Covid test thus far negative. Go figure!

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16 Replies
StriatedCaracara profile image
StriatedCaracara

In 2015 I hit my head three times same spot. Concussed after, and split vision the next day.I think the area is prone to inflammation, as seem to get headaches there when other things flare too.

However, I'm scared there might also be an aneurism, maybe as a result of the injury, so have mixed views each time prescribed steroid. (Can thin vessel wall and compromise things further.)

Since last course of steroid though headache not come back.

Treetop33 profile image
Treetop33 in reply to StriatedCaracara

I wonder about concussion leaving the head/neck vulnerable to inflammation too. I've always had a problem with it, and like you it mostly pops up when I'm having a flare up and/or reduce Pred. Sorry you have this too.

The doc was very thorough today, and checked for GCA (including blood test) and the possibility of other things like a small aneurysm (but this is unlikely as it went away). I'll have to see what pops up tomorrow with the results.

Thanks for replying.

StriatedCaracara profile image
StriatedCaracara in reply to Treetop33

My symptoms can be similar to GCA, so twice had ultrasound check.Sometimes I think it might be vasculitis in a neighbouring blood vessel.

Sometimes I feel headache starting if had very stressful day. If so, I get unbearable headache lasting a few seconds when I have to stop doing what I focused on. This then changes to become a continuous tender scalp type headache that can last weeks.

I had bad headaches after my first covid jab, I had had covid before this.

Latest covid jab caused a flare but this time no headache. Think recent short course steroid 20 mg, tappered down, cured my head issues a bit.

Treetop33 profile image
Treetop33 in reply to StriatedCaracara

So we know two things. We get some kind of inflammation related hangover from concussion, and that steroids deals with it (confirming the inflammation).

Treetop33 profile image
Treetop33 in reply to StriatedCaracara

Well quick update. I have a virus. So that's what it was about. Spent yesterday not being able to breathe. Today picking up a little.

OldTed60 profile image
OldTed60

Hi. I wonder if each of us have our own weak spots around our bodies relating to trauma caused by injury or related? This has been my own experience following traumatic surgeries, recurring dental infections/ abscesses, sun damaged skin and a whiplash injury many years ago when my oldest was a baby. My dermatologist referred to my skin problems as affecting my “weakest links -like that tv series” when I’d suffered Stevens Johnson Syndrome in my mouth and lips last year and this has been where my systemic sclerosis first showed clearly. Now I get the T of telengecstasia in CREST worst just where my glasses sit on my nose. I also have severe headaches when I’ve positioned my unstable neck badly and ophthalmic migraine when I’ve been very physically or mentally stressed and my BP spikes very high. Vaccinations don’t trigger me other than very achy arm but plenty of other stuff does.

Treetop33 profile image
Treetop33 in reply to OldTed60

I think we're onto something, and obviously something about autoimmunity might come into play here too.

I don't normally have a bad reaction to vaccinations, just this one. Some people have said it was worse for some unknown reason - possibly additional ingredients?

OldTed60 profile image
OldTed60 in reply to Treetop33

My husband (no underlying conditions) found it worse this time but for me it was just the same ie sore arm and flu-like next day or two x

CavendishCool profile image
CavendishCool

Well done you for getting a GP appointment firstly, I've been ringing every day for 2 weeks for the results of heart monitoring a month ago. Finally have one for 1st December. Anyhoo, I was diagnosed with a cluster of symptoms, one of which was a sharp pain in the right side of my head just above the temple. I had other symptoms and listed them all and was referred to the Rheumatology where I listed them again. I was fortunate to be diagnosed very quickly via this diary of symptoms and the 3 blood tests, but the follow ups seem to take ages, such as this heart monitoring which from first symptoms to my follow up will be 6 months. I work on the basis that I'm still here, so it can't be too bad. My Dad used to call it the "ostrich" syndrome. Hope it goes really well for you. 🙏

Treetop33 profile image
Treetop33 in reply to CavendishCool

Yes my docs are usually ok with me.

What were you diagnosed with, if you don't mind me asking?

CavendishCool profile image
CavendishCool in reply to Treetop33

Apologies for late reply. Been teaching yoga. Here is my official stuff as at 18th September 2023, my annual check up with Rheumatologist: SLE - mouth ulcerations, Sicca symptoms, arthralgias, fatigue, positive ANA and ds DNA with negative Crithidia. Psoriasis. Just off to find some sand to bury my head in.. 🦤 haven't got an emoji for an ostrich, but I have a Dodo. Hope all goes well 🙏

0936725 profile image
0936725

I can recommend you have a Thai head massage or whole body massage if you can manage it. Exhaustion/bruises after the massage is worth it as the body works hard to clear the toxins.

The Thai massage lady I have been going to regularly since December found inflammation in my body and moved the overloaded lymph nodes that the doctors GP & A&E didn’t begin to find. They healed a complete frozen shoulder I didn’t t know I had. If you are in Oxfordshire I can let you know where I go.

My inflammation/migraines/whole body inflammation began with the Astra Zeneca vaccines 2.5yrs ago, I have been house bound since, can’t drive due to the dizziness/fatigue. We didn’t consider AZ was the cause but GP/consultants/Covid Clinic confirmed this. Covid Clinic tell us they have many patients post vaccine reaction.

I was completely fit & well before AZ but now have all Lupus symptoms?

Paprika60 profile image
Paprika60

I had a very nasty reaction to the first and second Pfizer vaccination in 2020. The worst headache that lasted for days and days. Paracetamols didn't help. I also developed tinnitus in one ear which is permanent now. Ever since, I get a very specific piercing/jabbing pain in specific area (almost like following a vein or nerve) on my head, the same side as the headache I had caused by Pfizer. It is chronic. I have mentioned it to my Rheumy but no any specific answer. To help ease the pain, I run my fingers (all 10) through my head with steady strength and the massaging does help. Give it a try.

Treetop33 profile image
Treetop33 in reply to Paprika60

Thank you! Massaging does help, and is also mysterious as to why....!

Paprika60 profile image
Paprika60

I can only speculate it as inflammation of some sort, or slow blood circulation or who knows... as lupus seems to trigger so many odd symptoms. Even doctors all just say lupus symptoms. Cold weather (current!) triggers tight and pressing pain on top of my head. Take care!

Treetop33 profile image
Treetop33 in reply to Paprika60

Thanks. As it happens, I have just had the worst virus that quickly mutated into mild pneumonia, and it started with the head pain. It's gone now, thankfully!

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