Do My Symptoms Mean What I Think They Mean? Frequently Yes, But Just Sometimes.........

[Kendrew]

Back in January I began to experience a lot of head pains that were manifesting in several different ways. They ranged from a feeling of general tightness across the whole of my scalp to short sharp spikes of pain shooting up the back of my head, behind my ears and over the top of my head. Sometimes they felt like little electric shocks that would emerge suddenly & without warning, and last several seconds.

At times they affected my eyes, making them feel heavy and tired and my head would sometimes feel woolly, as if I wasn't quite 'there'.

At its worst, I also had pain in my jaw, cheeks, temples, and even my teeth!

....I know what you're thinking!!

Every day I would experience the pains.... they would fluctuate both in intensity and frequency from day to day and even from hour to hour, but with no recognisable pattern to their presentation.

They would feel completely insidious at times.

One day, fairly shortly after the head pains began, I experienced a visual disturbance (a wavering zigzag line in my left peripheral vision, lasting approximately 10mins)

I knew I had to go to A&E, and fast, as I was fully aware that all of these symptoms were strongly indicative of GCA, or maybe even a mild TIA.

Worryingly, all of the medical professionals I saw were dismissive of my symptoms and seemingly unaware of the potential medical emergency I could be facing. Despite forcefully expressing my concerns, I was sent home!

I then rang the GCA Fast-track helpline at my rheumatology clinic and left a message (you have to wait for a call back) I finally received a call back from the rheumatologist 3dys later! She told me to get my inflammatory levels checked at the GP's!

(So not that 'fast' in reality!!)

I also decided to have a full & comprehensive eye check, and my optician said from an eye health point of view, everything was healthy and normal including all related blood vessels, and that the visual disturbance was very common and called ocular migraine. (Thankfully, he's pretty clued up about PMR/GCA so knew what he was looking for.)

With absolutely no real help from any medical professional, 3mths elapsed and I was feeling no better, so for a 4th time I saw my GP. He finally referred me for an MRI scan of my head and neck, but only because I indicated I'd be inclined to NOT leave his room till he did something more than offer me strong painkillers!

Because I used our private medical insurance, I saw a neurologist fairly quickly and the scan followed thereafter.

The scan revealed that I had 2 vertebrae in my neck that were visibly displaced and were now pressing on nerves, and this was the main cause of my head pains. The scan also showed excessively tight muscles around the temples and neck.

My age, general wear & tear, and osteoporosis were also contributing factors.

The neurologist offered 4 possible treatment options:-

- medication

- cranial & neck acupuncture

- magnesium citrate supplements

- a nerve block injection into my head

I've opted for Acupuncture and supplements. (If that doesn't help then I can try the medication, but acupuncture has proven to be very effective at treating conditions like this, so fingers crossed!)

It was explained to me that any of the treatments (apart from the nerve block) would only have to be continued for 4mths, the idea being that this is treatable but 4mths is the time needed for a kind of 'reset' of pain receptors, nerve sensitivity and muscle tension to happen.... time to allow all these things to settle back down and respond normally again.

This is good news, but the really good news is that the neurologist also said that he'd never seen such a healthy brain in a woman of 67yrs during the whole of his career! No evidence of TIA's, dementia/Alzeimers, tumours, MS, jaw misalignment, etc. Also, no inflammation of blood vessels....they were healthy, and blood flow was good.

In response to the 'very healthy brain' comment, my husband asked if he was looking at the correct brain scan!! 😄 haha!

This is music to my ears..... as a woman of 67yrs, I know an MRI brain scan may pick up further 'issues' that the patient is still unaware of, so I'm overjoyed.

I think we must always be aware of the symptoms we need to be concerned about and act on them appropriately, but at times like these, it can be very easy to always assume the worst.

We need to remember though, that just sometimes, the symptoms can be caused by something far less serious than we first imagine.

I was convinced I was experiencing either GCA, or had experienced a TIA, or worse still, maybe had a tumour.

In my case, my symptoms were indicative of something far less worrying and the relief is huge.

I'm sorry this is so long but hope my tale will show that in our PMR/GCA lives, we can, and do receive good news sometimes, and we should never give up hope for a positive outcome.

[DorsetLady PMRGCAuk volunteer]

As you say good news indeed 👍 - but what a lot of kerfuffle to get there.. just ignore hubby’s comments -he’s obviously jealous 😳

null points for Fast Track -had it been GCA you could have suffered sight loss!

[Kendrew in reply to DorsetLady]

The sight loss was ever on my mind and I did everything humanly possible to be assessed by UC, A&E, GP, rheumatologist, etc, but no one seemed interested .....or interested enough! I was very lucky...this time!

[PMRpro Ambassador]

Onwards and upwards ... Sometimes it is like wading through treacle isn't it.

[Kendrew in reply to PMRpro]

Oh! Tell me about it! Almost 5mths to reach a reliable diagnosis!

[Tiggy70]

Hi Kendrew,

So pleased to hear it wasn’t GCA or a TIA. I think many of us with PMR worry about other serious issues occurring with our health. I certainly do. Your treatment by A&E and your GCA helpline was appalling. It’s easy to look back when we have reassurance that it’s nothing to worry about but at the time it’s so stressful and as we know stress and anxiety does our PMR no good at all.

I hope the acupuncture and supplements sort things out for you.🌸

[Kendrew in reply to Tiggy70]

Thankyou. Yes, it has been quite stressful few months.

[tangocharlie]

What a pallaver but I'm glad you got sorted eventually. What gets me these days is we have to take charge of our own health. The system has become 'not my circus not my monkey'. Like I put in a complaint about A&E missing my vertebral fractures but basically they say their job is only to check I haven't got a blood clot or had a stroke, not to find out what's wrong with me. You also have to be persisent in trying to get answers, and I bet so many people just give up. Probably loads of people out there with PMR just told it's old age and they just need to lose weight and do more exercise. Congrats on havinga healthy brain - what's the secret?

[Kendrew in reply to tangocharlie]

Hi TC,That's quite shocking, but a similar situation happened to me when Urgent Care told me I'd sprained my foot, despite witnessing my severe pain, inability to walk on it properly and swollen tissue.

A private CT Scan showed I'd fractured my foot!

Hmm! The secret to my healthy brain???? Now let me see! ........

CHOCOLATE!!! Haha!😄

No idea really!

[Bcol]

Excellent News.

[Rabbit090]

The zigzag lines are very interesting symptoms and not to undermine your very good diagnoses, they are similar to mine around mine of Takayusu’s.

When I was diagnosed it was for arm weakness and uneven blood pressure in both arms, but I did experience the zigzag lines previously and then again when my doctors first started treating my blood pressure that was fluctuating wildly on high dose Pred. I, too, had a full eye test on my own, and they found my eyes were perfectly healthy. I had assumed occular migraine but i found it interesting that it only occurred during bouts of either very high or very low blood pressure. They have not occurred since.

[Kendrew in reply to Rabbit090]

Hi Rabbit090,

It was kind of you to respond.

Thankfully my blood pressure is normal. I've taken it weekly myself since I started on steroids and I've been lucky that hypertension is one thing I don't need to worry about, so far.

In the absence of any other relevant or related symptoms, and following my brain scan, I'm confident my episode of visual disturbance was linked to my eventual diagnosis, particularly as it occurred on a day when my symptoms were at there worst.

I'm pleased you're situation has improved too.

[Judyliz]

Your wonderful brain is clearly shown in how you write. Always easy to understand, concise, interesting, and you pull us in to your story.

I am delighted with the outcome but, like the others I feel disappointed that your symptoms were not taken as seriously as they should have been.

[Kendrew in reply to Judyliz]

Thankyou Judyliz,

I appreciate your kind comments.

It's extremely frustrating, when as a patient, you try to do as much as you can to help yourself, and in doing so, become more knowledgeable about your own health & wellbeing than many of the medical professionals treating you!

To repeatedly endure those kind of encounters and perpetually need to keep 'explaining' & 'educating' can become very annoying and frankly, quite wearisome.

Haha! We keep up the good fight though! 😀

[Angelsmummy]

Good news and as you say K,often our fears of GCA etc can be something different,but obvs when visual disturbances occur,A and E is a must,even if it turns out to be nothing.Oh and by the way,so glad your brain is in tip top health!Sometimes think that Pred has eaten mine!xxx💐💐👍😜

[Kendrew in reply to Angelsmummy]

Hahahaha 😆

Well, as I said.... my husband is convinced the neurologist must have been looking at someone else's scan!!

Pred has definitely, at times, made me more forgetful, more absent minded, more 'scatty' and more confused. But the flipside of that, is that because I've needed to self advocate so much, and learn to put myself first and learn to say 'No', I've become,

- more confident to speak my truth (not in a rude way)

- more able to make (and stick to) those difficult decisions we sometimes need to make

- less bothered by what others think when I have to say "No".

- and I've stopped trying to always be a people pleaser!

I now just have to convince my husband that as my brain is so healthy & firing on all cylinders, I'm obviously going to always be right!!

There's an upside to everything!

😂😂😂😂😂

[Angelsmummy in reply to Kendrew]

Good for you!Got to admit since Mr zPred has become my friend ,it has changed my outlook on so much.I give myself space from people who stress me out,am getting to the point that with my commitments at home,I need to just focus on OHs well being and my own.I tell family to keep their problems to themselves as by heck,mine are far greater than theirs!Quite happy chatting to people whilst out having a coffee after shopping,being in my garden with my dogs,and wonderful conversations with a new found friend on the forum.At present,life is GOOD!Keep smiling K.xxx💐💐🌞😜👍

[Groggrim in reply to Kendrew]

Pred has definitely, at times, made me more forgetful, more absent minded, more 'scatty' and more confused.

Oh yes 🤔

[Kendrew in reply to Groggrim]

👍👍😂😂

[Groggrim in reply to Kendrew]

I was worried I was getting Alzheimers like my aunt but I think it's just Pred related 🥴

[123-go]

Only just caught up -had a busy couple of days- and what a horror story! It’s not easy fighting for answers when so poorly and what you’ve achieved is medal-worthy! And as for doc’s the healthy brain comment….🥇!

[Kendrew in reply to 123-go]

Hahahaha! 😆 Ste-e-ady!!!

[Gimme]

I used to get the zigzag lines with migraine when I was a younger woman pre-menopause, always linked to my monthly cycle. On a couple of occasions, I also had short term sight loss with it. It passed as soon as I got through the aura stage of the migraine. Possibly a good thing that I hadn't heard of GCA back then or I would have been freaking out. Luckily, it has never happened again since my monthly cycle stopped.

What a journey you have had! Hope they get you sorted and pain free soon. x

[Kendrew in reply to Gimme]

Thankyou.

Just having a diagnosis now and knowing nothing sinister is going on has already eliminated the anxiety, which in turn has eased the pain somewhat. I'm getting there.

[Pixix]

good for you, glad it’s not GCA! Completely different…but I had a bad fall on 9 January, & damaged my knee. GP surgery sent me to urgent care hospital dept, they wouldn’t x-Ray as they could feel bone intact. On crutches for 3 months now. Hospital said soft tissue injury, do exercises. Fast forward a month if complete agony, unable to walk, & I manage to self refer to physio. It will settle down he said, but stop the exercises,they are making it worse. Fast forward another month, my GP ow has me on 24/7 morphine, which is essential to move around. Have an argument with physio as he won’t refer me to next orthopaedic stage. Get fedup and pay £340 for an MRI. Results after two days show Ihave multiple injuries, including a completely ripped meniscus. I need surgery. So then I had to go through an interface service which usually gets you an MRI, IF they think you need one! But MRI results meant a jump forward and am now in queue for consultant. Marked very urgent, should see him in 8 weeks (the day we are due to go to Italy on holiday). Then starts the queue for surgery. That should happen about ten months after my fall. Ten months of morphine, unable to walk a step without quite significant pain. But current wait for MRI is six months here, if non urgent, which this is. Just another example of ‘help yourself, & believe in yourself’, but not connected to GCA, like your sad case!! Nobody would listen (except my GP,who is not allowed to refer to orthopaedics under local rules). I hope you feel better soon, take care, S xx

[Burroughs123]

Great news - you must be so relieved.

I had a similar experience almost 2 years ago and after an MRI and a visit (privately) to see a neurologist she diagnosed the same thing. She recommended Pilates, physio, gum shields (as I was gritting and grinding my teeth as well!) and to ensure that I cut driving down to a minimum and if I did drive, to ensure I sat without hunching forwards and to keep doing small neck/shoulder movements - slowly side to side. It worked a treat! Interstingly, I already take magnesium. My brain scan revealed some "age related" stuff which was pretty frightening at first but my neurologist was dismissive of it. I'm so glad your scan showed that your brain was super-healthy... long may that last! I hope your treatment plan is successful and you are feeling tip top soon.

[Kendrew in reply to Burroughs123]

Hi Burroughs123,

Thankyou for your message.

Already, the reduced anxiety levels have eased some of the pain.

I had my first acupuncture session today too, with a therapist who has several PMR patients on his list and is pretty clued up about the condition. What a refreshing change!

Some of the needles were quite painful as they were being inserted, and a few areas of my head were quite sore afterwards for a short while. Several hours on and I'm feeling pretty good.

Thankyou for your good wishes and hoping for good health for yourself too.