SUNCT & Hemicrania Continua


Has anyone been diagnosed with either SUNCT or Hemicrania Continua? (Hopefully not both :crossed_fingers:)

I personally believe the TN pain is a SUNCT symptom but having a CISS MRI scan soon to check for compressions.

If you have, would you mind explaining your symptoms and personal experiences please. I think am beginning to understand more about which symptoms and autonomic responses relate to each.

Also has anyone else been told that ‘there will come a point where you have reached your maximum allowed dosages and your pain will become uncontrollable’ - unless death takes you first?



No, never been told that. Can’t imagine why anyone would say something like that!
Live for today and let tomorrow take care of himself.
I am sending you virtual hugs and hope you are doi ng well.

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Hey Dave

Yes, I have been told that AND experienced it too. For me, I know if I keep taking pain meds I find I need more and more of the drug to do the same task. My body builds a tolerance to the med, my body gives me what I call ‘phantom pain’, like it’s screaming out for more meds.

Again for me, if I keep taking the medication, it ends up that it doesn’t work when I really need it. I have to regulate my use of opiates otherwise I can fall into a steep downward spiral. My wife can see I’m in agony and is forever telling me ‘Just take the damn meds…’ but I ‘try’ (Not always successfully) to stretch it out for as long as I possibly can. I have had the medicos often point at my use of meds as a cause of my ongoing pain, but they get shutdown fairly quickly. I know about addiction from personal experience, this is not medication withdrawal induced pain. I am NOT addicted to the meds.

It is not uncommon when the medicos run out of answers to turn to addiction and/or psych as a cause for ongoing issues of pain. As one said to me ‘It’s nothing we’ve done… …so it must just be YOU’, like we choose to be in agony. I also attended a world renowned Pain Clinic, tried acupuncture, TENS machine, meds of every colour and creed. JUST YUCK and I now simply ‘try’ to manage the best way I can for me, not the dr’s. I listen to what they say and follow their advice, but if I can manage my way, that’s what I do.

Hope it helps
Merl from the Modsupport Team


I’ve never been told that I wouldn’t get more meds for my pain I know I’ve read that if you keep going up and get to the maximum dose of a certain medication then you could start on a different type of meds for the pain and go back-and-forth maybe every five or 10 years depends on how quick you max out that medication

2 of my conditions are rare -

  • SUNCT is only currently responsive to Lamatrogine and Lidocaine infusions. There is also no data on it’s rareness rate on google. (Gabapentin, Carbamazepine can also take off a slight edge). I don’t like being stabbed, electrocuted or having TN symptoms. At worst I want to scalp the area of pain and pull my teeth out with pliers.

  • Hemicrania Continua is only diagnosed if it is Indomethacin responsive. I don’t like feeling that I am being kicked, punched, beaten with a baseball bat as well as having my head in a vice.

TN and Chronic Migraines have multiple options as most people know.

To be honest I expected the comment but not yet - we haven’t found my ‘baseline’ yet. But It is my second question and phase 3 in my pain management.

The first would be, and I am screaming for an answer, ‘when I am in excruciating pain, other than suicide, what is my contingency plan?’ Getting one in place would complete phase 1.

Phase 2 would then be working out the right meds and dosages.

Then in phase 3 I would be aware how much dosage uplifts I have left and then trying to work how much time I have in between uplifts - which will always be an unknown variable.

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Dave: What doe these abbreviations mean? In the newspaper biz, where I spent most of my adult life, it’s bad form to post an abbreviation without naming it in full first, showing the abbreviation next. Then one can go ahead with abbreviations. I am also interested symptoms, but too lazy to look the whole thing up.

I have suffered severe Trigeminal Neuralgia (TN) for 25 years. Nothing given for me to swallow or to have surgened in my pains. Until I chanced on VimPat, a costly drug. I take 100 mg. every 4 hours. No pain, not even after the last dose before sleep at midnight. This for Your Information (FYI).

Hey Oldwader,

“SUNCT is a Short-lasting, Unilateral, Neuralgiform headache attacks with Conjunctival injection and Tearing, it is a rare form of headache that is most common in men after age 50. The disorder is marked by bursts of moderate to severe burning, piercing, or throbbing pain, usually on one side of the head and around the eye or temple”. (Information quoted from the NIH)

Merl from the Modsupport Team

Hey Dave,

Sorry, but having been on this journey, that’s often the destination. Take the journey for yourself but don’t be too surprised if it happens. Look, some people are lucky enough to find their ‘key’, what works for them and I honestly hope you are one of them. It’s just for some that ‘key’ can be an elusive thing.

I’d recommend you keep some sort of pain/activity/medication/sleep etc diary. Having your journey documented can show any patterns over the longer term. It can demonstrate that you’re being proactive in your own care. It can also assist in listing treatments, test and trials of other options. I have had repeated, repeated and repea…test/scans. Having it documented can reduce the repetition.

I cannot agree more with your statement:

I have had numerous people make suggestions of treatments and remedies of what has worked for them, their friends and “ol’ Johnno from down the road”. I never discredit any of them, if that’s what has worked for them, that’s great. Most of them I’ve trialled myself at some stage, heck, if they work then that’s all I want. But alas I haven’t been that fortunate.

This is most definitely NOT a case of “One Size, Fits All” finding your ‘Size’, what works for you, can certainly take some trial and error to establish.

Merl from the Modsupport Team

Thanks Merl,

I’ve always ‘enjoyed’ reading your posts (even though difficult sometimes) as your struggle for the ‘key’ appears to be elusive too.

Luckily I am now under Professor Goadsby’s neurological department. Professor Goadsy is one of the people at the forefront of research for Trigeminal Autonomic Cephalalgias (TAC’s) and the comparisons with both other headache disorders and the link with Trigeminal Neuralgia (TN). Hopefully I can soon get a contingency plan in place?

I’ve had a ‘fantastic’ week. My GP in all his wisdom called Mental Health services, instead of pain management or the psychiatrist I have lined up for what I now call ‘Ongoing Medical Traumatic Stress Disorder’ (OMTSD).

It wasn’t fun trying to talk to a police officer at 11pm when I am being hit around the head with an intangible baseball bat. My Hemicrania Continua was now more predominant than the SUNCT.

You can’t get angry or cry your eyes out because then you become a psychiatric emergency. After the conversation was nearing the end, I ‘tongue in cheek’ said, “I can’t believe the way I’ve been treated isn’t criminal”. The police have now opened a case file and want to talk to me to see if there may be something in it.

Imho, I don’t think there will be; the UK government won’t want the negative publicity and are against assisted suicide.

I then had the National Health Service (NHS) harassing me, whom should know better and threatened the paramedics (didn’t want to) that knocked on my door and referred them to the police officer that I had spoken to.

Luckily it appears Professor Goadsby’s team are willing to listen and hopefully help in supporting a contingency plan.

Good look to everyone who is trying to find their own ‘key’ to pain management.

Sounds to me like you’re onto a winner with Professor Goadsby’s team. A good medical team, willing to investigate fully, that can be a very difficult thing to find. My recommendation is grab a hold and don’t let go.

I had a good Dr and he retired, then I got a jumped up, young, know-it-all who wouldn’t listen and damn near put my life at risk. In the end I had to make a formal complaint about him. I’ve since found another dr who’s much more willing to listen and follow through.

So, if you’ve found a good one, keep them close.

Merl from the Modsupport Team