I joined this forum a few years back when I suspected I had TN since I appreared t fit the description at the time.
I was diagnosed a while back as having SUNA (Short-lasting Unilateral Neuralgiform headache Attacks with cranial autonomic features) which is similar to the more commonly known SUNCT. A leading specialist I saw recently told me that it very closely related to TN.
They are part of the same family of disorders (TACs) and both involve activation of the trigeminal nerve. I have short stabs of EXTREME pain similar to TN, however the difference is they are not triggered by touch or anything. Also there is often a constant, background pressure feeling under the left eye along with it. Plus there are 100s of mini-attacks a day.
I was told a main difference is that TN doesn't have autonomic symptoms where as SUNCT/SUNA does. I get watery eyes during attacks and very bad nasal congestion most of the time.
I am taking 300mg Lamotrigine and 400mg Lacosamide which just about controls it.
This disorder is a lot rarer than TN, I was lucky to see a very good neurologist with vast experience in this area who was able to diagnose it properly and put me on some very specialized medications for it.
I would think there might be people out there diagnosed with TN who actually have this and maybe even the other way round?
Anyone got any experience with this condition?
Due to how uncommon this is, there is not a lot of information online and very few forums related to it.
So I wondered if I might fit in here since I experience much the same affect on daily life
Of course you fit in!!!!!! If you have pain , and its in your face some where, this is the place to be, lol!!! How wonderful to educate us on all this stuff. I didn't know anything about SUNA or SUNCT so I have learned something very new today. From what you described, I don't have this, I have trigeminal neuropathy, but, I am sure, now that you posted this info, someone here out of the 5,000 members I think it is, surely will come forth and say, "that sounds like me". Thanks for educating us on this.. I swear we learn so much here, we know more than the neurologists.
OH my goodness!! I'm so happy to read this!!! I have been dealing with TN for the past 4+ years and went in for MVD surgery but didn't have a compression. My TN pain continues to get worse and I am large cocktail of meds and even still I am in pain throughout the day. I live in UT and my brother lives in LA and he suggested that I head down to UCLA — so I've been talking with them and working to get my records down there for a 2nd opinion. The first call I had with them they said they want to start over with me and even confirm that I have TN — and just off hand, mentioned SUNCT, which I'd never heard of. In the past few months I have so much eye pain/problems which I've never had before. I've got an appt with a neuro-opthamologist next month.
My TN has always been really weird — really a lot like everyone else but really different that everyone too. It felt great to heard oh maybe this isn't even what you have. My pain hasn't ever really been triggered by touch, etc. Also I get a lot of pain in my skull, behind my ear, like a stabbing, shocking, aching pain as well.
Looking fwd to learning more. We shall see! So glad you have a good diagnosis! Cheers, Jessica
Imagine that I can not decide what I have, even my doctors ! pain seems to be SUNCT in nature but distribution of pain around mouth, lips, lower jaw like TN
I have this tears, redness, kind of swelling when pain attacks
For you, is it constant or you have remissions and attacks ?!
It is so amazing to me to hear someone describe the pain and agony of TN. For years, I would just tell doctors that I had earache because not one of my doctors ever knew what I was describing. I always likened it to the dentist hitting a tooth nerve except you can't jump away from it. My sister and I could always commiserate when she was alive but I never met anyone else with it. Luckily not one of my five children has ever experienced it. Mine comes with my colds or nasal congestion or from ANY draft. It is usually around my ears or head. It also comes like labor pains, every certain amount of time. Thank God, I can go weeks and months without it. When it hits it lasts from 2 days to 2 weeks. I don't know why it makes me happy to hear when other people talk aout it. I would not wish it o n anyone, even my worst enemy, but it males me feel less alone and solitary.
Thanks for the replies all of you, its good to feel welcome and I will try to contribute as best I can in the coming months.
dodo: if you have red eye, tears, etc it may indeed be SUNCT. I was told that TN does not have these autonomic symptoms. The background pressure/aching pain is constant, 24/7, sometimes a bit worse or better but is never gone. Then there are short (1-2 seconds) extreme stab/electric shock pains which occur anywhere from 10 to 100s of times a day (usually in clusters of 10-20 at a time).
jessicag: My pains often feel like a severe pressure and aching type feeling, like my eye is about to pop out. And if you have no triggers as well, SUNCT could perhaps be possible. I didn't realize until I saw this real expert in these conditions recently how closely related it is to TN. by the way anyone in the UK should consider going to him he does private appointments in London - Dr Manjit Matharu
When there is an extremely bad attack period (like right now), my mind goes into a sort of hypomanic state with racing thoughts. So makes it impossible to sleep sometimes.
The thing is, I've had it for two years and every month it gets worse. I keep increasing the amount of medications to match it but have now reached the max dose of the top-level drugs for this. I have been explained that there other treatments i.e. surgery, nerve blocks, etc so will probably need to consider something like that later this year.
Anyway I am off to try (and fail) to sleep - will check back this thread tomorrow.
I'm so sorry you are experiencing this. It is bad enough when you are in this pain but when it is caused by and even rarer condition than TN, it must be very hard to get treatment. I hope things get better for you over the next few months. I'm 100% sure I had TN and I had some of the eye symptoms you describe. Though when the surgeon got in, he found a blood vessel going right through the trigeminal nerve bundle instead of pressing on it like most people experience. That might be the big difference. My pain was also 100% of the time with very frequent attacks of worse pain. I always had very painful background pain with attacks that felt like someone hammering a very sharp ice pick into my face every few minutes. If your's is like that, I'm not sure how you are handling it. I had a very supportive spouse but didn't really understand how to help. I'm lucky that my pain went away for the most part after surgery. Good luck!
This is very interesting, I have never heard of SUNCT/SUNA and with all the ignorance out there, I would not be at all surprised if someone has been misdiagnosed with TN when they actually have SUNCT/SUNA. Of course, part of the diagnosis for TN is that an anti-seizure med has an effect on TN, where clearly it doesn't on SUNCT/SUNA as you have been prescribed other meds? So my guess is that anyone who believes they have TN which does NOT respond to anti-seizure med (if they've been on anti seizure for longer than 3 weeks to a month) might benefit from your post and this information. Thanks so much for sharing and I'm pretty sure you fit right in here! Maybe if you see anyone posting their symptoms similar to yours you could give them a heads up. All the best for your ongoing treatment.
Pls: interesting that you mention about the blood vessel. One thing dr matharu wants me to have is an MRI of my trigeminal nerve in order to look for exactly what you describe. I am having this, however to save money I am having it on government health care so there is a long waiting list. I was told that it can cause sunct in exactly he same way it causes TN.
Maur: you misunderstand, sorry if my post wasnt clear. The anti-epileptic drugs work very well and have basically saved my life so far. Luckily I respond well to them with not too many side effects compared to others. It is just that the condition is so severe now that they are not fully controlling it any more. I have missed doses of lamotrigine before and the pain that comes on is beyond words. I would be unable to function at all without them.
I was up until 3am last night so work is going to be a struggle on 3 hours sleep today. As ever thanks for the supportive words everyone.
Hi I understand your frustration suffering from SUNCT. I was diagnosed in 2008 and whenever i told anyone they didn't understand it and i felt isolated even with family. Whenever I suffered and attack the pain is so severe I cannot speak at times and i suffer in silence and it is difficult to describe the severity of the pain to somebody else because they are thinking in terms of a tension headache.
I suffer on a cyclic basis, where i am relatively pain free or low pain for the Summer months and most of the winter months but Spring and Autumn are agony averaging 30 to 60 attacks a day . Most of the time is spent in fear of when and how severe the next attack will be. The medication have reduced the level of pain from 10/10 to 5 or 6 and the frequency.
I have found that some of the side effects have some debilitating effects, loss of memory, inability to complete instructions. But considering the balance, pain against some mild frustration. I find if you keep the temperature ambient and avoid air condition fans it helps make the day more bearable.
I Suffer from SUNCT/SUNA on a cyclic effect, it happens in Spring and Autumn.
The Signs I get when attacks are about to occur are;
1. A feeling of tension along the trigeminal Nerve
2. Misshapen face around my Right eye with excessive oily skin in the direct area
3. Heavy breath
4. Drooling
5. Random stabs of pain, level 2 to 5 through right eye or along first half of Trigeminal nerve.
When I am in cycle I have 50 to 60 attacks a day.
level 5 to 7. Red eye. Running nose. Attacks can last for up to 2 mins and recovery can last for a min or so.
Washing hair and shaving can be very painful, even combing hair.
If your day is like this then consider SUNCT/SUNA but as far as I know it's unusual for the lower jaw.
I'm not an expert just sharing my experience to help find some answers. dodo said:
Imagine that I can not decide what I have, even my doctors ! pain seems to be SUNCT in nature but distribution of pain around mouth, lips, lower jaw like TN
I have this tears, redness, kind of swelling when pain attacks
For you, is it constant or you have remissions and attacks ?!
Sorry to hear you have this awful condition as well, it really as awful. You said about remission in the summer, at least there is a bit of reprieve for you. Now that I think about it, although I have never had any remission periods, I have heard of this being related to seasons before. I did have a better period last summer but I think that was just because I caught up the increasing severity with enough lamotrigine for a few weeks. I had a massive increase in pain during last winter too so maybe there is a bit of a connection, not sure.
The side effects are indeed a bother, I have a shockingly bad short term memory at times and I do feel trapped in my head a lot of the time if that makes sense. Kind of disconnected from people and the outside world to an extent. But I still function ok, working full time in a fast-paced job, the side effects are bothersome but very much worth it.
I would be interested to know which medications you are on? The Lacosamide I started recently is a very new drug, not commonly used for this condition yet, that is known for having much less side effects than the other anti-seizure meds (definitely true from my experience so far, nearly at max dose and barely feel any different!), so if you want to try something new definitely look into it.
I'm on a combination of anti-seizure meds ( Lyrica, Topamax, Lamictal ) which is helping managing the pain.
In strong winds I have difficulty crossing car parks and bridges.
Before i had to get a colleague to meet me at the door and park my car while I went into the building and the same at the end of the day, drive my car to the door so I car get into it. This is to reduce the risk of triggering pain while getting to work.
I found that once I started on Lamictal recently and it built up in my system it helped with my pain levels so far.
Lamictal is very effective for me too, it has reduced my pain levels and number of attacks considerably, although not as well these days because the condition is much worse now than it used to be I'm on 300mg and have tried going higher but can't tolerate the weird side effects once I get towards 400mg.
I used to be on Lyrica too but me and my neurologist didn't think it was helping too much any more so I came off it and replaced with Lacosamide (brand name Vimpat by the way) which is a lot better. I've been told about Topamirate but was warned of some quite severe possible side effects so decided to avoid it for the time being.
Hi Kyle took your advice and signed up here so I could add to the conversation.
I also have been diagnosed with SUNCT and have been dealing with this monster behind my left eye for about ten years now. I am 51 right now and they say it typically hits men in their 50’s how they can say anything is typical with something so rare is beyond me. My SUNCT comes in cycles it seems the first lasted a year or so then nothing for about a year then back for two years then again about a year off then a three year cycle then about 14 months off then it started back up about a year ago and is still going strong. I have been on so many =medications that I can no longer remember all of them and most either did not help or the side effect were bad enough to make them not worth taking. I have seen about five doctors including Dr. Dodick at the Mayo Clinic in AZ and was told he was one of the best headache guys in the US but all he did was confirm SUNCT and do a video of me to use in a symposium he was going to do in the UK this was a few years back. I am now taking 40Mg’s of Namenda daily and it really seems to help with no side effects I can tell so far, this is by far the best medication I have been on so far. Before the Namenda I had constant pain a headache behind the left eye that would not go away and only change in severity but now there is no pain and although I still get headaches they typically hit later in the day and that is so much better than 24/7 like it was. I am with the rest of you it is so hard for outsiders to understand what we are dealing with and for the most part I try not to even talk about it it is just easier but when the pain gets bad you just cannot hide it and you get forced to explain what is going on. I am very lucky I work for a medical research center at Stanford University so lots of doctors and they all are very understanding of what I am going through I also have a fantastic new wife that is my rock and supports me like no other, I will tell you if you are dealing with the kind of pain on your own and do not feel it would be fair to involve someone new in your life you need to rethink that, having someone close that loves you and supports you is a life saver when it comes to dealing with pain like this at least it is for me. Without my wife I am not sure I would have been strong enough to get this far and be able to deal with this on my own. Kyle and I have a small group of people we have found with SUNCT and we email each other a lot for support so if there are other SUNCT suffers reading this drop me an email and I will introduce you to our group, feeling alone is a bad thing when having this kind of pain and something this rare we need to keep together and share everything we try so we can help our doctors help us. I can be reached at ■■■■■■■■■■■■■■■■■■■■■
I have CONSTANT aching ... in different areas of my face, right behind my ear or lower skull as well as my eye. I am seeing a neuro-opthamologist at the end of April but I did just see a regular opthamologist who told me that my optical nerve is healthy, so that is good. If am not drugged, I get pain attacks (20+ in a day) that are unbearable. I currently take extremely high doses of Tegretol, Lyrica, Topamax + Indomenthacin and Baclofen for pain and I still live in aching pain all the time and my eye is always twitching or tearing or just plain aching. Now, my eye pain is new, within the last 3-6 mo. really has only gotten worse recently.
Again — touching my face doesn't seem to bother me, unless it's a lot of pressure like wearing ski goggles, or a tight hat. I have an appt. in 2 weeks with my current neurologist and a phone call with Dr. Neil Martin from UCLA (in California) Medical Center on Monday. Dr. Martin's nurse practitioner is the one who mentioned SUNCT last week .. Any advise on how to tell my current neuro (who I adore) that I've call in another Dr. ???
Cheers!!! Jessica
Unsure said:
Thanks for the replies all of you, its good to feel welcome and I will try to contribute as best I can in the coming months.
dodo: if you have red eye, tears, etc it may indeed be SUNCT. I was told that TN does not have these autonomic symptoms. The background pressure/aching pain is constant, 24/7, sometimes a bit worse or better but is never gone. Then there are short (1-2 seconds) extreme stab/electric shock pains which occur anywhere from 10 to 100s of times a day (usually in clusters of 10-20 at a time).
jessicag: My pains often feel like a severe pressure and aching type feeling, like my eye is about to pop out. And if you have no triggers as well, SUNCT could perhaps be possible. I didn't realize until I saw this real expert in these conditions recently how closely related it is to TN. by the way anyone in the UK should consider going to him he does private appointments in London - Dr Manjit Matharu
When there is an extremely bad attack period (like right now), my mind goes into a sort of hypomanic state with racing thoughts. So makes it impossible to sleep sometimes.
The thing is, I've had it for two years and every month it gets worse. I keep increasing the amount of medications to match it but have now reached the max dose of the top-level drugs for this. I have been explained that there other treatments i.e. surgery, nerve blocks, etc so will probably need to consider something like that later this year.
Anyway I am off to try (and fail) to sleep - will check back this thread tomorrow.
ALSO — I wanted to ask if anyone notices their face looking like this, where their nerve pulls their muscles in their face down (I believe their is a term for this) ...
I am no doctor of course but what you describe could indeed be SUNCT, the fact that it is not triggered by touching and also the autonomic symptoms. Also the fact you have many of them each day.
My eye and the left side of my head often twitch during attacks too and there is a great pressure behind my left eye similar to yourself.
I did the same as you, I went over my existing neurologist and booked myself in to a private appointment with a leading expert in TACs (family of disorders sunct and TN are in). This was SO worth the large cost since I got a more specific diagnosis and put on a very new med which my existing neuro wouldn't have known about. Any decent doctor should be happy that you are seeing someone with a more in-depth knowledge who can help more.
After years of right side TN the outside edge of my right eye and the outside edge right side of my mouth sagged down quite badly, and the interesting thing is that after my first successful MVD it repaired itself completely.
JessicaG said:
ALSO — I wanted to ask if anyone notices their face looking like this, where their nerve pulls their muscles in their face down (I believe their is a term for this) ...
Hi!
I am type 1, for almost 6 years, last 9 mo pain free after an MVD.
My surgeon, Ken Casey, also diagnosed my “sometimes” side effects of a bad TN Attack as SUNCT symptoms. He felt that they were related, as you said were both connected to the Trigeminal nerve.
I also experienced effects like I had eaten a spicy meal, runny nose, eye, and heated skin after a bad TN episode.
He was kind of excited upon hearing of those symptoms, said backed up another doctors published reports that TN could be related to SUNCT headaches.
I hope that you find relief! I know that MVD’s also give relief to muscle spasms related to the Trigeminal nerve. Would be interesting to see what connections there Are with these conditions.
