Has anyone been diagnosed with either SUNCT or Hemicrania Continua? (Hopefully not both )
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 âthere will come a point where you have reached your maximum allowed dosages and your pain will become uncontrollableâ - unless death takes you first?
No, never been told that. Canât 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.
Riana
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 âphantom painâ, like itâs screaming out for more meds.
Again for me, if I keep taking the medication, it ends up that it doesnât 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 Iâm in agony and is forever telling me âJust take the damn medsâŚâ but I âtryâ (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 âItâs nothing weâve done⌠âŚso it must just be YOUâ, 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 âtryâ to manage the best way I can for me, not the drâs. I listen to what they say and follow their advice, but if I can manage my way, thatâs what I do.
Iâve never been told that I wouldnât get more meds for my pain I know Iâve 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
SUNCT is only currently responsive to Lamatrogine and Lidocaine infusions. There is also no data on itâs rareness rate on google. (Gabapentin, Carbamazepine can also take off a slight edge). I donât 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 donât 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 havenât found my âbaselineâ 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, âwhen I am in excruciating pain, other than suicide, what is my contingency plan?â 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.
Dave: What doe these abbreviations mean? In the newspaper biz, where I spent most of my adult life, itâs 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).
âSUNCT 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 templeâ. (Information quoted from the NIH)
Sorry, but having been on this journey, thatâs often the destination. Take the journey for yourself but donât be too surprised if it happens. Look, some people are lucky enough to find their âkeyâ, what works for them and I honestly hope you are one of them. Itâs just for some that âkeyâ can be an elusive thing.
Iâd 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 youâre 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 repeaâŚtest/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 âolâ Johnno from down the roadâ. I never discredit any of them, if thatâs what has worked for them, thatâs great. Most of them Iâve trialled myself at some stage, heck, if they work then thatâs all I want. But alas I havenât been that fortunate.
This is most definitely NOT a case of âOne Size, Fits Allâ finding your âSizeâ, what works for you, can certainly take some trial and error to establish.
Iâve always âenjoyedâ reading your posts (even though difficult sometimes) as your struggle for the âkeyâ appears to be elusive too.
Luckily I am now under Professor Goadsbyâs neurological department. Professor Goadsy is one of the people at the forefront of research for Trigeminal Autonomic Cephalalgias (TACâs) 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?
Iâve had a âfantasticâ 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 âOngoing Medical Traumatic Stress Disorderâ (OMTSD).
It wasnât 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 canât get angry or cry your eyes out because then you become a psychiatric emergency. After the conversation was nearing the end, I âtongue in cheekâ said, âI canât believe the way Iâve been treated isnât criminalâ. 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 donât think there will be; the UK government wonât 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 (didnât want to) that knocked on my door and referred them to the police officer that I had spoken to.
Luckily it appears Professor Goadsbyâs team are willing to listen and hopefully help in supporting a contingency plan.
Good look to everyone who is trying to find their own âkeyâ to pain management.
Sounds to me like youâre onto a winner with Professor Goadsbyâs 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 donât let go.
I had a good Dr and he retired, then I got a jumped up, young, know-it-all who wouldnât listen and damn near put my life at risk. In the end I had to make a formal complaint about him. Iâve since found another dr whoâs much more willing to listen and follow through.
So, if youâve found a good one, keep them close.
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