Temporal Arteritis/GCA: Hello everyone, I'm 2... - PMRGCAuk

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Temporal Arteritis/GCA

Teeravis profile image
16 Replies

Hello everyone,

I'm 29 years old and have been having a bulging/swollen Temporal Artery for a few months now. It seems to get real bad when I exercise, it's hot or am stressed. It gets really really big and I can see and feel it pulsing really strong under my skin. It's not sore or tender that I can tell. I know it's rare for young people to have TA but I wanna be sure.

Also, I have trigeminal neuralgia pain, so it's really difficult for me to tell if my pain is from that or not but for the most part I feel fine.

Is this something I should see my doctor about???

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Teeravis profile image
Teeravis
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16 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

You are certainly very young to have GCA (TA as it’s sometimes referred to) - do you have any other associated symptoms ?

But any head issue should be checked out.

Teeravis profile image
Teeravis in reply to DorsetLady

I feel fine for the most part. I have Trigeminal Neuralgia which is pain in the face from the Trigeminal nerve. But for the most part I feel fine.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Teeravis

Ok, but as others have said - get it checked!

Teeravis profile image
Teeravis in reply to DorsetLady

Ok, like I said, I have thousands of dollars in medical bills, that's why I was hesitant but your right, I should get it checked. Thank you

PMRpro profile image
PMRproAmbassador

There is a form of arteritis that may involve the temporal artery that does occur in younger patients. However, it is perfectly normal for arteries to become more prominent during exercise or when hot or stressed. It is also unusual for GCA to present without other symptoms. You already have a diagnosis of trigeminal neuralgia which was presumably arrived at independently of anything else?

Whatever it is, it is a problem for you and you need it to be explained.

Teeravis profile image
Teeravis in reply to PMRpro

Thanks for the reply. I've had all kinds of problems with my head for about 4 years, facial pain(which has been diagnose as Trigeminal Neuralgia) dizziness, ringing in the ears, dizziness, eye issues. I've seen several neurologists and they don't really know whats going on. This swollen vein popped up out of the blue and I don't really think its caused new symptoms.

HeronNS profile image
HeronNS

Quite honestly, although the chances are low that you have temporal arteritis your symptoms are worrying you so it certainly won't hurt to see a doctor. As you know, GCA is not completely unknown in younger people although very rare. There is also a disease called Takayasu's arteritis which is similar to GCA although it usually doesn't affect the temporal artery, and this is found in younger people. I also wonder about the trigeminal neuralgia because that also is relatively uncommon in younger age groups. Is there any specific trigger for the episodes? Inflammation is also involved with trigeminal neuralgia.

At best your mind will be put at ease, and if there is something more serious going on the sooner it's discovered the better. (A personal story: When I was in my early thirties I developed a swollen gland in my neck. Naturally I freaked out. The doctor I saw said that it could be one of a hundred things, 98 of which would be of no consequence. He sent me for a biopsy. Thankfully it was of little consequence, but nevertheless something it's good I know about - non-symptomatic sarcoidosis - so I hadn't wasted healthcare resources finding that out, it is something I should know, and if it had been something more serious it would have been caught quite early.)

One advantage of seeing a doctor with worrying symptoms when you're young is they often seem to care more if a younger person is ill, so your concerns should be taken seriously.

Remember, the doctor's job is to look after people and make sure they are healthy, so don't feel you should not go and ask your questions. Before you go, keep a record of exactly when your symptoms are worst and, if you can remember, how long this has been going on. Even if it's not arteritis it may still be something you need to know about.

Teeravis profile image
Teeravis in reply to HeronNS

Thanks for the replies, I appreciate it.

I'm hesitant to go into the doctor because I'm already up to my eyeballs in medical bills because I already have several health problems and I can't afford hundreds of dollars in tests.

My TN is triggered by movement mostly, if I'm standing or sitting it will come on and when I lay down it will slowly cease. It is extremely uncommon and I have it in both sides of my face which is even more uncommon but the neurologists have no idea why I have it and have done every tests they can do, I even went to the Mayo in Rochester. It's not the electrical shock type, it a severe constant pain in the facial area of my Trigeminal nerve. So, it's extremely difficult for me to tell if the pain may be from the artery or not.

HeronNS profile image
HeronNS in reply to Teeravis

I guess you're in the US then? I can see you don't want to get into debt over this issue. Surely if you were so thoroughly checked at the Mayo clinic they would have considered all possibilities including any illnesses for which trigeminal neuralgia is a symptom?

But you say you are feeling otherwise well, plenty of energy and all that? So it may just be one of those things.... Apparently warmth is supposed to ease trigeminal pain, and avoid activities which cause the veins to bulge if this continues to worry you.

Blearyeyed profile image
Blearyeyed in reply to HeronNS

TN is an uncommon diagnosis in general , not just for the young but more often not considered for young people , a bit like the way GCA / PMR is overlooked for the under 50's .

It is because of lack of awareness with GPs and Dentists in general rather than it not happening. It seems to be less common in the under 30's only because it can take many , many years of Pain and misdiagnosis before someone finally recognises it as TN .

Unfortunately , by that point many of Us have been through inappropriate Physio to correct non existent stiff necks or jaws , tooth extractions or dental surgeries and corrections , and often years of being told it's just headaches , or migraines, or " all in the Mind" or Anxiety. Occipital Neuralgia can have a similar misdiagnosis.

The pain is very much like Electric Shock Treatment or Water torture , it's not nicknamed the " Suicide Disease" for nothing . If it goes uncontrolled you do eventually suffer from the misdiagnosed Anxiety , Depressive Thoughts and Tension the Doctors have dismissed it as and can begin to wish you were Dead .

As the Medication that is used to help Anxiety issues is often the same medication used to help TN or ON , people can spend more years being misunderstood until the symptoms continue to get worse or you get to a knowledgeable Pain Consultant or Neurologist , as the GP believes the change in your symptoms proves it was merely Anxiety and Tension rather than the fact that they have inadvertently begun to treat the actual Syndrome.

My Diagnosis for TN came at 36 , for ON at 38 , but I'd been suffering with them both off and on for at least 10 years before that.

HeronNS profile image
HeronNS in reply to Blearyeyed

My grandfather suffered from this late in his life. As he lived in a different country I didn't see him often, and perhaps never after the diagnosis, but I was told how hard he found it. He died many years ago, perhaps effective treatment is available now.

Blearyeyed profile image
Blearyeyed in reply to HeronNS

Unfortunately it isn't that effective , you do have to wait for it to subside , the drugs only dull it , the best way is to work out your triggers and avoid them at all costs. It's one of those things that is a lifelong companion unless you have a successful surgery but that can have it's own risks , like numb face for life , or the dreaded mesh that can cause nasties to emerge in the future like our own GCA for some.

Teeravis profile image
Teeravis

Thanks for replies everyone. I appreciate it, not entirely sure if this is cause for concern or not.

Blearyeyed profile image
Blearyeyed

I had both Trigeminal and Occipital Neuralgias for more than ten years before GCA I have mentioned on various posts that the Pain isn't quite the same but you can get confused because the GCA or TA affects the same area. For some time I was sure it was just an increase in TN,/ ON symptoms and then possibly a side effect of the Uvietis I had in my eyes triggering extra Neurological Pain , but I also realised that much of the pain had become very different.

It was more severe , constant , gnawing and non of my other medications did anything to reduce it . Blurred vision and dizziness increased , brain fog and lack of coordination occurred and increased all over body pain , especially in the shoulders and chest.

As you will know from having TN already , the pain that comes with it is quickly triggered then throbs or stabs reducing over a number of weeks after the trigger for it has been removed and we take extra precautions or Neuro med increases to stabilise it again.

The jaw pain and stabbing in the teeth again was gnawing , tiring and constant instead of the more stabbing tooth ache style pain associated with TN or Occipital Neuralgia.

Basically the pain is in similar places , of a similar scale but the way it acts and responds to medication is very different.

My GCA was finally diagnosed by tests through the Opthamologist as they were monitoring my Uvietis complaint. So , I would suggest getting to a Optician or preferably an Opthamologist for eye tests and proper retinal scans if you think there is the slight possibility that your symptoms may be some form of Arteritis and not just a part of your Neuralgia not being managed as effectively as it needs.

You could have begun to have more than one Cranial Neuralgia now though too , like me have progressed to having both TN and Occipital Neuralgia . The new symptoms and this possibility mean that you need to be referred to a Pain Management Specialist as your soonest referral . They can test for the Neuralgias and offer up a new system of Pain Medication Therapy . Possibly using steroids by injection or orally or a new combination of Neuro drugs . Cranial anaesthesia injections which for some remove the pain for a number of months at once , or even Botox are also available for Neuralgia support , as is Physio but done only with a Physio Specialist in Chronic Pain and Fibro issues as bad , misdirected physio on the head and neck can cause Flare symptoms .

If your Neuralgias are progressing and you have other Body Pain , Stomach or Gynae issues beginning to occur it is wise to take steps now via the GP to also be checked for other Multi System Chronic Conditions like Epstein Barr , Joint Hypermobility Syndromes , Connective Tissues illnesses , Lupus , Fibromyalgia or Hypersensitivity illnesses as Neuralgias seldom happen alone but are just the Pain component of a bigger issue that needs managing to get proper relief.

You are young , very young for GCA or standard Temporal Arteritis , but it is possible at your age to have a similar condition called Takayasu Arteritis , so it may be worth being checked for this and discussing it with a Rheumatologist or Neurologist. It is more common in females and the Mean Age of presentation is approximately 25. Checking for GCA or TA can be done via the same Specialist appointment , and having your inflammatory markers checked with a blood test , as well as you Rheumatoid factors and ANA done soon by the GP will add to helping in a diagnosis one way or another.

Let us know how you get on ,

Blearyeyed profile image
Blearyeyed

Yep, the big triggers , teeth brushing , chewing very hard or crunchy foods , definitely wind ( warm or cold) , hair brushing or wearing my hair too tightly in hobbies or clips.

I can't wear earrings anymore even light ones. Moving the head too quickly and definitely certain types of neck movements and exercises . Running as the bouncing movement passes through the neck .

Hats that are too tight around the ear area too , and cold .

Blearyeyed profile image
Blearyeyed

Yes , I've been woken by electric shocks through the eyes , but sometimes that was because of episodes of Thunderclap Migraine that had been happening on and off during the day , not from a,TN or ON incident.

A few times it occurred while going to sleep , during periods of insomnia or after waking as part of TN or ON , but there was a trigger for it as I realised it was from laying in an awkward position, I may have turned to suddenly in my sleep or had been putting too much pressure on my ear area or neck during sleep. It could also happen as part of a flare up when the Shock pains were happening all day and at that point my Medication had worn off .

I now use a microbead travel neck pillow on top of my actual U bend pillow , not for around my neck but I sink my head in the hole with the open part cushioning my neck , it takes the pressure off around the temples and ears. The U bend pillow allows my shoulders to be gradually raised and cushioned as well as the neck area also relieving pressure and generally reducing my Fibro , PMR GCA and Neuralgias during the night . It's made sleeping easier or if I don't sleep it's reduced Morning and Rebound head pain.

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