Sunct

Question

I am a 26 year old female. My neurologist recently diagnosed me with Sunct (Short-lasting unilateral neuralgiform headache with conjuntival injection and tearing) Pretty much to sum it up in a normals persons "point of view" I get severe burning/stabbing pain on the left side on my head that ranges anywhere from the top of my eye, forehead, behind my ear and sometimes what seems to be the base of my scull. My left eye goes red and starts tearing and also my left nostrel starts to run dpending on how severe the attack is. I have severe neck cracking. I start to feel the pain from the moment I get out of bed, until I fall asleep again. I seem to sleep a crazy amount just to try an keep myelf from feeling any pain. The pain only lasts seconds but happens anywhere from 50 (on a good day) to 200 times a day! In between attacks I get an aching feeling in my head. HAS ANYONE ELSE BEEN DIAGNOSED WITH SUNCT? I read up on it as much as I can, but because it is considered to be a "rare disease" with no cure, there seems to be very little information. I want to figure out different things people have tried with success. I have a energy filled 5 year old and cannot continue to live like this! I am currently on 100mg lamotrigine with still no relief! I am constantly frowning from being in pain all the time. I just want to live a normal pain free life, WHY ME? Please help if you can!

This discussion is related to Occipital head/neck pain.

TrigeminalRachel · Answer

I am not diagnosed with SUNCT, but my diagnosis has been narrowed down to either SUNCT or another few others of the Trigeminal Autonomic Cephalagias (TAC's).

If you ever want to chat, I am here.

I'll also share a bit of my story.
I experienced what many others here have described. Mine was chronic, all day pain, with sometimes only half a second of respite between stabs that ranged from 1s to over a minute long. It felt like something was going through the left side of my brain, or poking out my left eye, over and over again every day for 2.5 years before I finally told a professional. Talking about it actually made my attacks more spaced out. Here's what has helped with my condition:
1) Believe it or not, the first thing that really helped me was to run. I can't tell you how hard it was to run with what felt like a pole going through my left brain every other second, but I did it. A friend of mine also taught me how to do circuits at the gym. It didn't happen overnight, but after a certain point I began to realize I was getting periods of time without pain during/after working out. A monumental moment for me was working out with my friend and looking at the clock and realizing I had gone an hour without pain.
2) Diet. I am now on a very, very low inflammation diet. Vegan, gluten-free, no nightshades, no added sugar. I also typically avoid peanuts and inflammatory oils. This has made a HUGE difference. I also have to make sure TO eat and drink water. Hunger/thirst can be triggers for VERY unpleasant pain. I not only eat a low-inflammation diet, but I prioritize anti-inflammatory foods such as turmeric, ginger, onion and garlic. 
3) Psychedelics. I have had positive experiences with both psilocybin (magic mushrooms) and cannabis. I would mostly advise against smoking cannabis, however. For me, that usually made the stabbing attacks worse, while improving the sort of lingering constant dull pain that I experience. I currently vape, with some success. 
4) Herbs. I've had some luck with skullcap, blue vervain, meadowsweet and St. John's Wort steeped in a tea with some peppermint for taste. Helped get me back on my feet.
5) Supplements. Magnesium citrate and Melatonin have possibly been positive influences. My osteopath has recommended Magnesium Orotate for my muscle spasms. 
Dunno if that's relevant to SUNCT.

My pain is nothing compared to what I used to experience, so it's hard to categorize it. It was definitely 10/10 for years. Now, I go for extended periods of time without pain, and the most pain I'll typically experience in a day is about an 8/10. Let me just repeat, that though: *I go for extended periods of time without pain.* This is a big deal for me. Right now, I'm having some pretty irritating pain on the side of my head, face, and in my left brain. It's still really only at most a 4/10, I would say. Nothing compares to that bad pain, so it's hard to classify anything else- I'm so glad to feel less pain. I go for long times without pain, and then typical ranges are 2-4/10. So, that's a MASSIVE, DRASTIC improvement. 
I continue to work out regularly (or else suffer increased pain), and I stick pretty religiously to my diet. 

I would love to talk to anyone else about your experience. I'm sending love and strength to anyone who has dealt with this.

melody171 · Answer

So sorry that you have this pain also, I feel all I want to do is sleepso I can be out of pain I know my family doesn't understand. Melody

LauraWinchester · Answer

Good evening! Let me start out with saying that I cried when I found this. I have been dealing with SUNCT since Aug 2011. When I was officially diagnosed there was a feeling of relief at just having a name for the pain, but then I hit a wall of disappointment when I found out more about it. We are few and far between, those of us that have been diagnosed with SUNCT and unfortunately there doesn't seem to be much in the way of research being done. That being said, I am 32 years old now, and I am female. My neurologist did a barrage of tests including multiple MRIs and CT scans and even went so far as to do a cranial arteriogram (not sure if I spelled that right). For me, I have anywhere from 60 to over 100 attacks a day. My doctor tried me on all the anti-convulsants and even had me on Indomethacin for 3 years straight. The Indomethacin (NSAID) actually worked but then because I was on it for so long without a break I ended up in the hospital with multiple blood transfusions due to an internal intestinal bleed, so if you get put on it just be diligent. Unfortunately none of the anti-convulsants worked for me and I haven't found any homeopathic remedies that work either. As of right now, my headaches have many triggers including turning my head either direction, tilting my head back, bending down to pick things up off the floor, lifting any kind of weight, lifting my head off the pillow, sitting up too quickly, laying down too quickly or standing too quickly just to name a few. I have had a total of 2 attacks that hit an intensity level that caused my brain to say "nope" and shut down causing me to pass out. The first time wasn't so bad because I was holding onto my husband when the attack started so he was able to keep me from hitting my head, the second time I was not so lucky. I was in the middle of Wal-Mart and managed to hit every shelf with my face on my way down to the concrete floor. Luckily I didn't break any bones but imagine my embarrassment waking up in the craft aisle on the floor slightly drooling. Not my prettiest moment. I have to admit that there have been days that I don't want to get out of bed because for the most part if I lay there still I might just have a day without headaches, but with two young children, that's not really an option. There are days that I just want to sit and cry and wonder why me? but that doesn't do me any good either. I have learned over the last 4 years that sometimes you just have to pull yourself up by the boot straps and keep on marching. I have had to apply for disability because I am unable to work due to SUNCT. I am not able to drive anymore and my sweet and patient husband has to help me do everything from washing my hair to helping me get dressed and even ties my shoes, things I should be able to do myself. Losing ones independence is hard, but at least I know SUNCT won't be the death of me. Keep your heads up, it is so nice to know that I am not alone. It was extremely heart warming to read this thread and see so many people who are like me. God bless to you all and I will keep each of you in my prayers.

Geemeister · Answer

Hi im a 55 year old man and fellow sunct sufferer. It saddens me to hear of the problems you guys have. I was diagnosed with sunct around 2000 having suffered from what i thought were bad migraine - how wrong could i be? I have attacks of pain over 200 times a day; some of which are so painful i am knocked to the floor and vomit with the pain. I have been informed the condition is both incurable and in my case inoperable. I have never met a fellow sufferer and my neurologist informed me that he was unlikely to see another any time in the next ten years. I have tried all the various options of drugs to try and control/suppress the condition but non worked for me. I am left taking various types of morphine to try and make the pain manageable. This works to a degree but is not ideal. I have been told i have an extreme version of the condition which is known to be a high suicide risk. Im not sharing my story to make anyone feel sorry for me or to scare those hoping for a miracle cure. Im sharing to say that there are people just like you who go through the same hell every day and understand your plight and cry for help. You are not alone. Be strong and take each day at a time. My thoughts are with you all

CiCi54 · Answer

I'm 54 and a woman, have had these HORRIBLE headaches since I was 20, was only diagnosed in 2005 after decades of not knowing and being misdiagnosed. 

Everyone responds to different remedies, keep trying.  SUNCT is extremely rare so press onto a neuro who has experience.  When I have what I call a cycle of these headaches, they start out with a few a day grow in number and duration effecting my personality with so much pain, as well as never knowing when to expect the next headache - which usually happens within the hour and at peak last about 15 minutes, every  hour of the day and night for months on end.  You all have my sympathy for having to endure even one of these dibliltating headaches.

Helpful to me was finding an anti-seizure drug I can tolerate, and cortizone injections at the base of my skull....they do not totally take the pain away, but it is a lot of relief.  Please know you are not alone!!!  I have found NO one who understands the amount of pain they bring.  We here do!!

obmuj · Answer

Hello,

Are you still struggling with SUNCT? I've had it since Nov 2010 with very little let up in pain. I have exhausted every possible medication but nothing seems to help. I'm getting to the end of my teather to be honest. I recently had a few weeks where i hardly had any attacks and was quite excited that SUNCT had finally gone away. Unfortunately it came back with a vengence. I struggle with work and have tried a few new jobs but some days the attckas are that painful I can't attend work or concentrate. 

How are you coping my friend? I know its difficult and I wish you good luck in finding a cure. I have a fiend with MS and she smokes cannabis for her pain, I tried this and it did actually offers some temporary relief but obviously its illegal.

I look forward to reading about your experiences with SUNCT.

Take care and my thoughts are with you.

Obmuj

megestelle · Answer

Hi. I am a 19 year old female college student and I was recently, as in about a week ago, diagnosed with SUNCT. The pain of the attacks is by far the worst pain I have ever experienced in my life. They are concentrated on the right side of my head, mostly right above my right eye. After going to countless doctors, and a normal MRI report, I finally went to a neurologist and got an answer. Although I am glad to know what exactly it is, I am still scared that I will have them forever. I was put on Gabapentine, but so far all it has done is make me dizzy and tired! Has anyone found ANYTHING that has cured or helped them go away?? They make my every day life almost unberable! :(

obmuj · Answer

Hi, I am a 36 year old male from Wedesbury who was diagnosed with SUNCT in March of this year after I was involved in an RTA and the side impact protection system air bags deployed right in to my face and head. I have been for MRI and CT scans with no avail. I was started out on Gabapentine and worked up to 3600mg per day but with little relief. I am now on 200 mg Lamotrigine and 1800mg Gabapentine but still having attacks. There seems to be no rhymn or reason as to why or when the attacks begin. I always have an aching feeling under my right eye which almost feels like a cold brick placed against my head. I wish I know what to do as recently I've been let go from my job due to capibility. has anyone with SUNCT been successful in claim ESA or DLA? I would love to contact other suffers to share experiences and just chats with ithers that know what I am going through. tristen.***@**** Good health to all!

schan1975 · Answer

Hi  I just read your comments on sunct.  I was diagnosed with sunct about 2 years ago.  I have tried all of the common medication and we have exhausted them now.  I have also had electric accupuncture and occipital nerve blocks twice all with no relief.  It is like you said very rare and itwould be nice to chat to someone who actually had an idea of the pain that I am in all the time x  hope you are well though x  schan

Miss5377422 · Answer

Oh yes, I dont know how to edit, so I will add on here. I have had an MRI with and without dye, coming back normal.
On a scale of 0-10 (0 being the least intense) I would rate the attacks with a 10 without a doubt :(