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Strange pain in temple

Hey, I hope it’s ok to ask for advice / other people’s experience here.

I have had headache issues recently which are still undiagnosed and feel at a loss, like I have hit a brick wall with doctors.

It started about 3 weeks ago with a sharp pain when I touched my right temple, almost like a burning feeling that sometimes goes towards my ear/cheekbone. I then had a fairly mild headache which felt like what I’ve experienced in migraines before, which was mostly around my forehead and eyes. I then developed a strange feeling in my skin with my temple pain, hard to describe, and my headache would change throughout the day to different areas and I had nausea and dizziness.

My GP thought it might be sinus related or something to do with my nerves. I then had a blockage in my right ear which gave me bad vertigo, which went when it was treated. But still getting little bouts of dizziness and nausea. I was put on antibiotics to treat a possible sinus issue which didn’t work.

I was then referred to ENT at the hospital, they concluded it’s not an ear nose or throat issue, said they might refer me to neurology then decided not to and suggested I go back to my GP to try a month on migraine meds. However, both my GP and I aren’t sure if it is migraine.

Currently I have this weird shooting pain when I touch my temple, ringing in my ears, headaches on and off which change through the day, bouts of slight nausea and dizziness. I also get quite bad tension in my neck/shoulders which I’m not sure if that could be causing it, although I’ve had tension headaches and none have felt like this.

I know nobody here can diagnose or recommend treatments, I’m just wondering if anyone has experienced anything similar, especially with the pain I have when I touch my temple. Or can suggest anything I can look up or discuss when I next talk to my GP? We were both disappointed the hospital didn’t investigate further.

Sorry for the long post! Just feeling rubbish and desperate to find out what’s wrong

  1. Thank you for reaching out and sharing your experience with us. I'm sorry you are going through such a difficult time getting an accurate diagnosis - don't give up!
    It's so hard when we don't feel well and simply want an answer! I wish I had something solid to suggest. One thought is something called giant cell arteritis which we have information on here; I'm not suggesting this is what's going on, rather something to discuss with your doctor. Will you let me know what you think?
    Wishing you a low pain day, Nancy Harris Bonk, Patient Leader/Moderator Team

    1. Thanks for your reply!

      That’s one thing that did come up but I think my doctor ruled it out as there’s no inflammation.

      They’ve prescribed me some medication to treat trigeminal neuralgia but they’re not convinced that’s what it is either. And after looking it up, I think it’s maybe more likely to be occipital neuralgia as I have a lot of pain around the occipital area and my neck and right shoulder are full of knots and I always have a lot of tension there.

      I will discuss again with my doctor but I feel like they’re just trying to treat the pain and I really hoped they would investigate more to find out what’s causing it as I’ve had this constant headache and feeling sick and dizzy for over a month now ☹️ It’s really affecting my day to day life. I’ve found having my neck massaged can relieve the feeling on my temple for a day or so but doesn’t help the headaches and dizziness.

      They won’t refer me to a neurologist which I feel would have at least ruled out other possible diagnoses. I tried the meds last night for the first time and I feel so groggy today. Not ideal when I have a toddler 😂

      1. I find it very concerning that they will not refer you to a neurologist or headache specialist, What is their reasoning? Reading your original post I thought of trigeminal neuralgia. Or maybe shingles? Have you had a rash like chicken pox? On the side of neck, shoulders, ear etc? I do hope you find relief from this pain after taking the medication, and that you find answers to these mysterious symptoms. Rebecca (comm advc)

        1. Thanks for replying Rebecca.

          No I’ve not had any rash or anything, and no fever like symptoms at all.

          They said that even if they did refer me to neurology it would be upto a year before I get seen and that they would expect to have tried medication for the pain.

          I feel like I’m being difficult for pushing for a diagnoses and not just wanting to mask the pain as I really feel there’s something going on and want to manage it without meds that are going to make me feel like crap if possible.

          When I was at the hospital for my ENT referral they initially said that they would refer me to neurology if they didn’t find anything but they changed their mind. The only reason I can think they didn’t refer me was that during consultation it came up that my mum passed away last year from a brain tumour. They seemed to think I was worried that I had a brain tumour and spent a while explaining why I most likely didn’t. I told them I didn’t think that’s what it was, and my mum didn’t have any of the symptoms that I have, I just know it’s not a normal headache, and that’s when they said it’s probably a migraine and to go back to my doctor for migraine meds. I feel like they decided I was just being paranoid and didn’t take my symptoms seriously after that.

          It’s really getting me down now, even when I don’t have pain I’m lightheaded and can’t focus, I feel like I’m just getting by every day doing the bare minimum, and not doing the things I need to be doing. I’m a stay at home mum and it’s restricting what I am able to do with my daughter and putting more pressure on my partner who works long hours. I just feel so down with it, especially after having such a difficult couple of years with lockdown and losing my mum, I feel like my daughter hasn’t had me at my best yet since she was born I just want to get back on my feet and at my best for her. I know she’s too young to realise it but she’s missed out on a lot with everything that’s gone on since she was born.

          Sorry for the rant just having a difficult day!

          1. no need to apologize! We are here to listen and support. And also it does sound like you've had a really rough go of it so you have reason to need to vent.

            I'd just like to give you affirmation that what you are feeling doesn't sound normal. I believe we must follow our gut instinct and unfortunately it sometimes does take being a squeaky wheel (which no one likes being) to get our medical needs met. No one else knows what it feels like to be in your skin so sometimes you have to push hard to be heard. But please know we are validating what you are saying here. It's not okay to feel like you can only do the bare minimum and to have a sense that something is off and have your doctors not be willing to look carefully at what could be happening.

            I went to a migraine clinic (in-patient) - three-week stay, many years ago - hoping to get a diagnosis that would make my migraine attacks clear up. My roommate was diagnosed with a nose tumor. I was kind of jealous because it was removable. She got it taken out and was better. I emerged with the diagnosis of chronic daily migraine. All those tests- MRI's, scans, everything- just to confirm what I already knew. A diagnosis for which there is no cure. A real let down that has let to years of having to learn how to manage a challenging condition. Yet, loads of surprising lessons about compassion and gratitude along the way. And yes, all during parenting young ones.

            Still, I'm so grateful I got that work up- otherwise, I would've always wondered and worried what was afoot. I hope you will feel empowered to push for answers. This is your life and your body. We are here for you every step of the way. Warmly- Holly team.

          2. My heart goes out to you Sarah! You are going through so much and I felt frustrated for you just reading this post. No, you are not causing problems by pushing back against the doctors and advocating for yourself. You have the right to any kind of medical care you think you need, regardless of what anyone else thinks about it. I hear your clarity when you say that this is different from what your dear mother went through. You seem to have a good awareness of that and I am sorry the ENT team was so quick to write it off as anxiety. That happens all over the world and nothing makes me madder! We believe you and you are right to pursue more help, no matter how long it takes.

            Try not to worry too much about your daughter. While you may not be at your best, she is little and all she knows is that her mum loves her, you know? Every family is different, and the fact that you are here expressing these concerns shows that you ARE a good parent, even on the days when you feel badly and need to rest. Take care of yourself and make the most of the good times. We are here for you and cheering for you! -Melissa, team

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