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Sticky Blood-Hughes Syndrome Support
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Pain in right temple

Had a stinker of a day yesterday. Saw GP 8.20am as had intense pain in right temple for 4 days. Got sent straight to eye casualty at RVI hospital as GP suspected temporal arteritis. Doctor at RVI was rude, said it can't be that as I'm too young ( I'm 42 ) and people over 50 tend to get it. But my gp had said as I gave autoimmune conditions I could have it.

So then returned to GP 12.40pm, she was so angry about hospitals response. So she got a nurse to take my bloods to check ESR levels . My hubby had to take them to QE hospital and were marked as urgent. Guess what, the test couldn't be done as the bottle wasn't full enough!!!

My GP rang me after 6pm to say she had talked with a consultant at QE, and they think it's more likely to be trigeminal neuralgia. So I have to take amitriptyline aswell as all meds I already take. I already take aspirin, hydroxychloroquine, fluoxetine, loratidine and mebeverine. Oh and I have to take paracetamol and codeine for the pain too.

Has anyone else experienced this? I'll feel happier when I see my rheumy in 2 weeks, as I'm worried incase it is temporal arteritis, I don't want to lose my sight or have a stroke!!!!!

15 Replies

Hi Rach

Please note that after I releid to your post I kep writing for some reason. So please feel free to ignore the rambling aboput the suicidal guy I med in A&E.

From the little I know about it, I dont think trigeminal neuralgia is a significant threat to your eye sight but it can be pretty painful.

A&E can be a nightmare I know. They seem to think that if you are not about to drop dead then you shouldnt be there. Even when you have soemthing which needs urgent treatmemt to help ensure no long term damage.

I went to A&E a few weeks back for the first time since a sports accident 10 years ago. The doctor did a few tests and said yes you have soemthing going on, with high inflamatory markers etc. But said that he couldnt say what and I would have to go back to my GP for a referal to a rhuematologist. So much for my attempt to fast track things. Meanwhile, walking is getting harder and harder and my levido legs look like a poor example of Picasso's purple period and my head has felt like the kind of hangover headache that you get after a student pub crwal, except that it doesnt go away with pizza and televsion.

While waiting in A&E for tests to come back, a guy covered in blood came and sat next to me. This wasnt soemthing I was hoping for as I have a bit of OCD around blood. But walking away would have seemd rude. Sometimes social norms can be more powerful than primitive fears i guess. Anyways, I got talking to him and it turned out that he was covered in blood because he had decided that it would be agood idea to take the canula out and was amazed to see the fountain of blood that ensued. I went and got him a cup of tea (in part a chance to esacpe while the blood on him had a chnace to stop dripping) and cam back and chatted some more. He told me that he had been suicidal all his life, that he had had encephalitous as a kid, that his mum had died of MND, and that he was an alcoholic. But, he said, the alcohol had saved his life. He had set out to finish himself off last year and was so drunk that he tripped on brambles whle takling a short cut through the grave yard and ended up unconscious. I guerss he eneded up in the grave yard but not in the way he expected.

Im not really sure why Im telling you all this. I guess I just got writing and havent stopped yet. Funny thing is that I came away from A&E none the wiser about what was happening to my body (in addition to the two autoimmune conditions I'm already diagniosed with). But speaking to this guy was like a kind of epiphany. Ive been very depressed myself since my health began collapsing last year and feeling kind of without a purpose. What do u do if you are an academic researcher by trade and now have severe brain fog, not to mention disppearing eyesight? But I felt that I might have helped teh guy I spoke to. He seemed to have been smiling at the end and seemed a bit more positive. Maybe my purpose might now be to use my time in the darkness to help others in a similar place. So, once I have the next batch of hospital appointments out of the way, Im think of going along to a Samaratans training open day to see if they might be interested in a half deaf, half blind volunteer with novelty purple legs.


Sorry first line is full of typos! I meant to say after I replied to your post I kept writing etc.

damn eyes!


It was the initial idea that they thought it was temporal arteritis, then being told without the test, that it's probably not.

Loved reading your reply, and yes I think samaritans would be a fab idea


Ok, I get it now. I misread your post. It seems so unfair that people with autoimmune conditions keep getting more conditions. As if one were not hard enough. But I guess that is just how it is. And a pain to take so many meds. Im only on two atm but suspect that I will come away from my next trip to rheumatologist with a long shopping list of meds for the recently diagnosed conditions. At least prescriptions are free in wales. Just that the medical care is rubbish. So you dont have to pay for meds but cant be at all sure that you are getting the right ones.

Thanks, I think the smaritans might be an idea. I once worked on a mental health line in my uni holidays and felt that it went ok. Though you can never tell what wil happen at the other end of the line.

Anyways, hope the temple pains subsides soon.



I know you have been diagnosed with Lupus. Have you now been diagnosed with HS/APS?

As to the eyes; I had a lot of neurological symptoms with balance/ear/eyes and when I started Warfarin after using Aspirin for almost 10 years which helped at first but when I was operated in my neck for Hyperparathyreidosis I was worse and had to start Anticoagulation with Warfarin. After proper and stable anticoagulation my neurological symptoms disappeared.

Have you read "Sticky Blood Explained" by Kay Thackray? She has got APS and writes about those eye-issues (quite like mine) she is experiencing. I suggest you read that book!

Also discuss the Anticoagulation with your Specialist as they explained my issues were from micro-emboli. They are not seen on a Scan.

Best wishes from Kerstin in Stockholm


Yes diagnosed with Aps in January


Hi Rach, excepting the headaches that started in childhood, my first symptom of APS was Atypical Trigeminal Neuralgia on the left side of face. Thought at first it was dental problem. Finally a jawbone biopsy was done that revealed microvascular ischemia. Anticoagulation finally decreased the pain. Nancy in West Virginia

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I was diagnosed with trigeminal neuralgia years ago but mine was pain in jaw and one side of face with numbness .I was prescribed Tegretol.Got better but now keep having symptoms same and like sensitive teeth pain even thou use appropriate toothpaste.I understand mine mild and pain can be so intense for others and sounds unbearable for you. I hope you get relief soon


Hi Fra,

Are you properly anticoagulated now?


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Gone below range at moment but has been ok for ages thanks Kerstin


Hi Rach,

I know exactly what you have been through. Three years ago I suffered terrible blinding headache in my left temple that did not respond to strong painkillers (Endone, a narcotic. As an aside I can only recommend that people avoid Endone for several reasons). My GP and specialists were concerned that it appeared to be temporal arteritis and so I underwent a biopsy.

Fortunately this turned out to be negative and I'm just not sure what it actually was. I can only encourage you to pursue medical investigation, keep taking the pain relief and also keep up daily doses of Vitamin D, especially if you aren't able to get into the sun on a daily basis. Vitamin D helps with any autoimmune issue and one highly regarded neurologist that I saw who is well versed with APS strongly recommended it.

Good luck.


Thankyou, I'll get some vitamin d tablets, as I didn't know that


Yes in my 30's I was Dad with trigeminal Neuralgia! Horribly painful! I've had APS my whole life tho so as a child I'd get sent to the hospital for a week and come out with we don't know what's wrong with her! At one point they thought I had Leukemia but turned out to be something I remember (have photographic memory) as being called Pernicious Anemia! Have no idea what that is but remember hearing it!!!


Vitamin D

Dr Michael Mosley (UK) runs a TV series studying health and one episode was on Vit D. He split a group of about 30 adults into three groups and each group relied on one main source of Vit D for a number of weeks. Blood levels of Vit D were measure before and after the trial.

The three main sources of Vita D are sunlight, supplements and eating oily fish and each group took concentrations of one of these. The results showed an equal increase of Vit D levels between the groups. His conclusion is that the cheapest and most accessible form of the vitamin is getting daily sunlight on your skin. I take a daily supplement and get plenty of sunshine but this depends on where you live of course.

At least 1000 international units of Vit D is recommended and it usually comes in capsules of this size. I think that taking them with a meal improves absorption and also best taken in the morning as it has an effect on melatonin which influences your sleep.

A good diet with foods that contain Vita D can only help...oily fish, eggs (i have eaten 1-2 doz per week for years), cereals, cheese (dietary calcium helps offset of the bone density loss associated with a number of APS drugs).

I just came across this interesting bit of info....

When to get your sun

When you go out for your daily dose of vitamin D, you might like to consider taking a morning stroll, rather than afternoon. A study in mice has found that propensity for skin cancer fluctuates according to circadian rhythms. Mice are more likely to get skin cancer when exposed to UV radiation in the morning, thanks to low levels of an enzyme which repairs UV damage.

Researchers have hypothesised that humans likely have higher levels of the enzyme in the morning (the opposite of mice, which are nocturnal) and may be less susceptible to cancer from UV damage in the morning than the afternoon. But further research needs to be done before any recommendations for humans can be made.

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Has anybody checked your B12 levels? As this can be related to what you describe if they are low. MaryF


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