Trigeminal neuralgia / occipital neuralgia
Some of you may have read my previous topic about my headaches and how I’m struggling to get a diagnosis.
If you haven’t, a shortened version is that my doctor won’t refer me to a neurologist. I was referre to ENT but ear nose and throat issues or any type of infection have been ruled out, and we don’t think it is migraine.
My doctor has started treating me for trigeminal neuralgia, although she isn’t convinced that’s what it is but I’ve started taking amitriptyline which so far isn’t helping.
Looking up trigeminal neuralgia and my symptoms, I agree with my doctor it doesn’t quite tick the boxes and I think there’s a possibility it could be occipital neuralgia but again am unsure if this can cause all the symptoms I’m getting.
Because I’m not really getting any further with my doctor, I wanted to ask if anyone here has trigeminal or occipital neuralgia and would be happy to tell me about your experience of it? Eg your symptoms, how you were diagnosed, how you manage it, anything really.
I’m not trying to self diagnose, I just want to research a bit more so I can discuss further with my doctor or get a second opinion from another doctor.
I’m seeing a physiotherapist tomorrow as my neck and shoulders are very tight, so am keen to hear their opinion too.
Thanks in advance! Everyone’s been so helpful so far here
Thank you for sharing this update with us. While I don't have trigeminal neuralgia, I don't know it's very painful. Let me share our information on this condition with you here:
https://migraine.com/search?s=trigeminal%20neuralgia
I understand you're not asking for a diagnosis, rather gathering information, which is so important when living with chronic illness. I'm sure others will be along shortly to share their experiences with us.
Will you remind me why the doctor won't refer you to a neurologist? Is it time to find a doctor who will?? And is it necessary to have a referral to a neurologist or even better a true migraine/headache disease expert, from your doctor? Maybe a call to the insurance company is in order explaining this? Sorry for all the questions!
Hoping today is a good one, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com TeamThanks so much for your reply Nancy!
My doctor hoped that ENT would have referred me at the hospital if they couldn’t help, and when I asked her about a referral she said even if I got one it would take about a year to be seen by a neurologist and they would expect me to have tried medication beforehand. She thinks it is a nerve issue that’s causing my symptoms, just not sure exactly what.
I’m in the UK, so this is all through the NHS I don’t have any private insurance.
My dizziness and nausea was bad today, I had a physiotherapist come to see me tonight (someone who works for the NHS but also works self employed so I paid for this myself) and it seems to have helped a little. He gave my neck and everywhere else a good crack! He did a bit of massage and stretching and said he can try acupuncture too.
He also said I might be able to get a referral to the department he works in, it’s called Physical Persistent Symptoms Service. He said there’s a chance it could be an accumulation of things, including some recent emotional trauma which they can also help to deal with. So I’m going to call my doctor back tomorrow and see if she can refer me.
Hopefully she will and I can get to the bottom of it or at least get a little relief 🤞🏼
Thank you for reaching out and sharing your journey with us. I'm sorry that the medical team wasn't more forthcoming with surgery details - that's very disappointing to say the least.
Surgery, at this point, is typically not the best option for treating migraine as it's a neurological disease without a cure. We've heard from many who have very mixed results with these types of surgeries.
How are you doing today? Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Teamthank you for your reply, I really appreciate you sharing your story.
You sound like you’ve really been through a lot with TN. How are your symptoms now? Do you find yo are able to manage the pain and live your life well?
hi! I have had trigeminal neuralgia since 2017. I don’t have occipital neuralgia. The difference between the two is a good bit. It first depends on where your pain is. TN is a cranial nerve that gives pain in the face. I wrote about the trigeminal nerve in this article and how it activated during headache attacks https://migraine.com/living-migraine/trigeminal-nerve.
Occipital nerve is actually a spinal nerve that comes out the c2/c3 but the pain is felt up the back of the head up the scalp and behind the eyes. An occipital nerve block is often used for relief but also diagnostically.
I hope your drs are able to help you navigate. I’m more than willing to answer more questions.
Oh one more thing is here is classic TN and atypical. Classic is the lighting strikes while atypical is more chronic and constant but not as sharp.
That's so frustrating she won't refer you. Is it possible to get in without a referral? I would encourage you to try to seek out a therapist regardless of if it's in the department you were hoping for. There are therapists who specialize in chronic illness that will have a deeper understanding of what that life is like ... there are also great podcasts, YouTube videos and other free resources available. Don't be afraid to reach out for the support you want and deserve. Hugs to you. -Melissa, migraine.com team I'm sorry you are stuck in limbo. TN is a spectrum disease just like any other. For some it may start as mild and progress, for me it started pretty harshly and got worse. There are a few possibilities with your situation, it could be once they can treat the ON the facial nerve pains you feel may subside. However, it could be the longer you go without it managed it could worsen. While I understand wanting a diagnosis before seeing if a medication can work, the problem is if it's trigeminal neuralgia it's just based on symptoms ruling out other potential causes. The double edged sword is the longer your symptoms are unmanaged, the window opens for things to progress. Once you have the TN diagnosis typically the first thing to do is find a medication that works for you. Most do Tegretol as that's the only FDA approved medication for TN - however some like me are allergic to it. Some find the side effects intolerable. So then there becomes a laundry list of medications to try to see if something works. For occipital neuralgia, it sounds like they haven't found something that works for that yet? Have they tried occipital nerve blocks yet? Those can be diagnostic as well as a treatment. There are greater and lesser occipital nerve blocks that can be done. I hope your doctor will listen and work quickly to get you managed. Anna (Migraine.com Team)
Thanks so much everyone who has replied, I have read all comments and they have been very helpful.
I thought I’d post an update as I’m still feeling like I’m getting nowhere.
We are thinking it is likely atypical trigeminal neuralgia causing the sensation in my temple, but still unsure on the other headache and neck symptoms.
So after my physiotherapy session, my friend who works in the PPSS department of the NHS (they help with managing persistent physical symptoms) said they can help me manage these symptoms aswel as the symptoms from the emotional side of things ( I have a history of panic attacks and anxiety which have got bad again since my mother passed away last year). My doctor said she didn’t want to refer me as she didn’t think they could help, I told her I was referred to first steps a few months ago and that didn’t help. I wasn’t offered anything else here. She then decided to do some blood tests and said she would refer me if they came back clear, which they did.
Meanwhile, I went to see a chiropractor (privately) who picked up on a couple of things but said she didn’t feel comfortable treating me until I had an MRI scan as there was some red flags raised which she couldn’t understand why my doctor hadn’t sent me for a scan already and she said I need to be seen urgently, not with the one year wait as my doctor said there would be if I was referred. So she wrote a letter to my GP. I then got a referral through to book an MRI scan - no appointments available in any hospitals.
My doctor then called me to get me in for a face to face appointment (same practice, different GP) he said he didn’t want to get involved but had to as they letter came through when the other doctor was away. He asked why I went to see a chiropractor and said a MRI scan won’t show anything as he’s sure it’s nothing serious (again, my mums brain tumour was mentioned and I’m left feeling like they think I’m putting it on to get a scan as I’m paranoid I have one too) and now that the chiropractor has mentioned it it will be in my head that I need a scan. I explained again I don’t think I have a brain tumour, I just want the treatment from the chiropractor to see if it helps and and I need the scan to rule things out before I can get this. Really felt like I wasn’t being taken seriously.
We also discussed medication, I have tried several which have all left me with awful side effects such as extreme fatigue, feeling drunk etc and being a stay at home mum with a toddler who isn’t sleeping well it’s really hard to cope on the meds, plus they haven’t worked with the pain and the side effects often trigger my panic attacks when I’m out and about. I was told I might have no option but to keep trying medications.
During this consultation I said I was still waiting for the referral to come through from PPSS, he then looked and said I wasn’t referred and the other doctor must have changed her mind and decided to wait until I’d had the scan. I was so mad at this - why?? When they’ve said they’re confident a scan won’t show anything, told me it’s likely caused by stress, I’ve told them I’m struggling mentally and they can help with that too, while they’ve offered nothing to help with my mental health. Why would they go back after agreeing to a referral and not discuss this with me? And if it’s caused by stress like he said, surely it makes sense to treat and manage the stress especially when I’m sat in tears in his office?! I had to practically beg for the referral to be sent, which he said he would.
He sent the MRI scan through as urgent so I have managed to get an appointment for this Sunday which is good, but I’m feeling so deflated now, as I still feel I’m not being taken seriously by my doctor. The TN pain hasn’t been bad lately but the headaches are and the dizziness and tinnitus have been really bad the last few days and nothing is helping with it. I’m so stressed out with it all day, then when I go to bed at night and try and relax all I hear is this constant ringing which is so loud at times it drives me mad.
Sorry for such a long post! I felt like I needed to get that off my chest 😅
Never apologize here! We are here precisely to listen and provide support and hopefully to help you take some of the weight off your shoulders from the incredibly tough realities of migraine. Thank you for this update. You have really had an awful time while you've simply been trying to find some answers and relief. I'm so sorry to hear the battle you've been in while just trying to advocate for yourself. To not feel heard and instead to feel judged, second-guessed, and disbelieved will of course shut us down - making us feel deflated, as you said - and angry too! There is an unfortunate and enormous power imbalance that often exists between patient and doctor. So difficult to navigate this when it is the patient that is the one experiencing life (pain, symptoms, and every sensation that goes along with it) in the body.
It's unjust that you had to be brought to your knees emotionally, crying in the doctor's office, to finally get the attention you needed and the referrals and appointment you require in a timely manner. All while, still, feeling the undercurrent of not feeling believed.
Are you seeing a neurologist or a migraine specialist for your migraine-related questions? I see you are in the UK, so I don't have an updated list of specialists in that area, but we do recommend those who have migraine to be treated by migraine specialists. The relationship between doctor and patient in this area is so very important. For all the reasons you've outlined, especially due to the fact that this is largely an invisible disease, we must feel that we are respected and believed by our physicians. Perhaps it might be time to seek out new members of your care team. Just a thought. I know you have a lot on your plate.
We are here every step of the way, whenever you need us. Thinking of you and sending you compassion and warmth. - Holly (migraine.com team).
