New user with similar headaches to Cluster (SUNCT)

[RSoxGuy]

Hi CB forums.

Im a 33 yr old Male from Mass. Ive been watching this board for a few years on the recommendation of my Dr. to hopefully find some alternative options.

I was diagnosed with S.U.N.C.T. (SUNCT-Short-lasting, Unilateral, Neuralgiform headache attacks with Conjunctival injection and Tearing) for about 4 years now and have found no relief. I get about 15-30 attacks a day that last from 30 seconds to 4 minutes at a time located above my left eye and on extremely rare cases above my left eye. Ive been told that Cluster headaches are a close cousin to what I have and is more researched and common than SUNCT.

It began slowly around the age of 27 with an attack once every few months, then it became once a month, then everyday until I decided to speak to a Dr about it. It wasn't always 15-30 attacks a day, as it was less when it first started but hasn't increased much in the past 2 or 3 years. Its been pretty consistent at 15-30.

There is no "trigger" nor are they seasonal. These happen everyday, every week and all yr round. Temp changes, wind, foods, smells, light changes, elevation, sleeping or awake, these attacks come and go randomly.

Some times I will have 2 or 3 in an hr, sometimes 10. Sometimes I can go an hr or two, sometimes 3 without one attack. Occasionally I can tell when one is coming. Its almost as if I can feel my brain moving inside my head before an attack and within 20 seconds or so the pain comes.

This effects every facet of my life. My sleep patterns (haven't had 1 full night of uninterrupted sleep in years) are bad. I normally dont get more than 3-4 hrs combined of sleep a night for no more than 45 minutes at a time before attacks wake me. Thus my body is constantly tired and lacking energy and I was a very active sports player/worker before this happened. When Im not getting attacks my mind and body is so stressed from this "condition" that Im unable to calm down and sleep in the first place. It affected my job (driving) until I was put on full disability 2 years ago. Having my eye water and forcing the palm of my hand into my eye area over and over and not being able to speak clearly during an attack draws many strange looks from people who don't know me.

Ive been to numerous doctors in and out of Boston (Mass General, UMass Worcester, Brigham and Women's, ect) with little to no relief and even less answers. Ive tried over 40 different medications from O2, female fertility drugs from which I hoped to get a side effect to help which didnt work, numerous pain meds, which never stop the pain but only numb the body, Pregabalin, Gabapentin, Topiramate and Verapamil, $100 nasal sprays and Botox (twice) amongst many others. Im hoping to find an answer or help instead of having Neuro simulators installed in my head in hopes of getting some relief but even that procedure is another shot in the dark as Ive really exhausted most RX options it seems.

Ive also tried RC seeds as suggested by this site and its users to no avail. I began with 20 seeds and a week later I was up to 100 in one drink (that stuff is absolutely gross by the way) and didn't receive any effects, positive or negative.

Thus far the only relief Ive been able to find is from Marijuana and that relief is very little if any. If i happen to be having attack while smoking, the attacks aren't as intense, or painful. If I had to put a number on it I would say that it takes off maybe 5%-10% of the pain away. Just enough to notice but not nearly enough to be very effective. Mind you I am using "street" Marijuana which means I don't know how much measured THC is in each "bag" and Im pretty sure every "bag" is different stuff which doesn't help much.

So I guess this is my way of asking for help and my way of putting a small part of my story out there as it seems there isnt any1 else out there to speak with that knows about SUNCT other than Drs. Hopefully this post has helped some1 or maybe some1 may have a suggestion or two for me.

Thanks for your time!

[spiny]

RSoxGuy,

That sucks big time. > I read about this dis-order a few years back and was appalled at the time.

I have no suggestions really, I just wanted to make you feel welcome. I have had a few ice pick headaches in my time and that would most closely correspond to what you have. They are very intense and really bite.

There are people with more experience here and some will respond soon I bet.

I do know this: Lack of sleep will really change your day, month, etc. It ruins my attention span sometimes and my my mood a lot. I don't want to imagine this being a constant thing rather than the 6 months I have endured.

Welcome and I hope someone has suggestions that will help. Have you tried mushies? Perhaps the outcome would be different than it was with seeds. Just a thought.

spiny

[RSoxGuy]

Other than when i was a teenager, I haven't tried mushrooms. Though it sounds like it may be the next step in my search.

thanks for the quick and positive reply.

[BostonHeadacheDoc]

Welcome RSoxGuy,

You really should think about coming to the meeting in Las Vegas this Friday/Sat Sept 21 & 22nd. Last year a patient of mine with SUNCT actually went. I have insider info that the sign up is very high already so plenty of opportunity to meet other folks.

BHD

[MoxieGirl]

Hi,

I believe my clusters have a foot in the SUNCT definition and a foot in cluster headaches.

There is actually a triad of 3 headache types that fall under the cluster grouping. SUNCT, Cluster and PH (Paroxysmal Hermicrania).

My clusters tend to be quite short, normally 10-15 minutes, a long one lasting 30 minutes. But I also have extremely short ones, measured in seconds or 1-2 minutes. I get a lot of these, but not the 10+ a day for a SUNCT diagnosis. Usually 1-5 a day, and not every day. So, I don't have the frequency of SUNCT, but I also don't normally have the very long headaches of a cluster.

I am finding mushrooms are helping me. RC Seeds also helped, but I think shrooms are working better. Worth a try.

Renee

[ThatHurtsMyHead]

RSoxGuy,

If you have taken up to 100 RC seeds with not effects at all.  I'd suspect the seeds were old.  Try ordering from another vendor.  It seems there are more old seeds out there than fresh ones.

PFW,

Jeff

[diamondmaker]

Also not clear, are you waiting the 5 days between doses? I only ask because it is unusual to go directly from 20 to 100. If not waiting 5 days, that can negate effects.

[RSoxGuy]

Also not clear, are you waiting the 5 days between doses? I only ask because it is unusual to go directly from 20 to 100. If not waiting 5 days, that can negate effects.

Yes, I waited a week in between trials.

Other than ruining my favorite drink (now I cant drink it without thinking of that nasty taste), it did nothing for me. Perhaps they were old seeds as another poster said.

Also, the marijuana helps me with eating. Something that was never an issue before this began. 

[spiny]

RSoxguy,

Back when my CH got bad, I researched everything. Including SUNCT. Why? Because I needed answers and CH were not supposed to affect women as often as men.

" Most of the time SUNCT occurs spontaneously, however attacks can be triggered by simple daily stimuli such as touching the face or scalp, washing, chewing, eating, talking, coughing, blowing nose, or showering. they also can be triggered by light (including sunlight and fluorescent lights) and injuries. Stimuli capable of triggering a cluster headache, including alcohol, smoke, strong smells and a warm environment, can also trigger SUNCT in a few patients.[1] In some cases, patients of episodic SUNCT only exhibit symptoms biannually in spring and fall. This periodicity suggests that the hypothalamus, which is responsive to day length and photoperiod for regulating circadian and seasonal rhythms, has a role in its triggering.[2]"

You are chronic, which sucks. Also, this disease has only recently been defined, which also sucks.

"Inefficiency of indomethacin usually indicates SUNCT over paroxysmal hemicrania."

But, the one helpful thing may be that the Hypo is indicated in this as well as CH. Therefore, the natural meds for CH may help you, so here goes.

Melatonin: Take 30 minutes before bedtime. Start with 3mg and work up to 10mg. If you can still get to the john during the night without weaving as if drunk, you are in the correct range (my experience). If it works, it will buy you a few hours of peaceful sleep.

D3 Regimen: If you want to try this, we will post a link. It is just vitamins. Omega3, D, and others. I am not completely up on the current protocol others are following now. I take Omega#, D3, Calcium, and Potassium. It may have changed over the months, but by body likes these Vits.

Energy Drinks: Your hits are so short, it may not make a difference. But, I drink coffee every pm as a preventative. Energy drinks work better for many. I can't handle them. But, coffee every afternoon is a big help for me.

MJ: Most with CH find it is not a good thing, but some find it helps. If you are needing to eat more and gain weight and it works, keep going there.

Vit M: Ok. Seeds don't work for all, so they move to Vit M. Over time, some stay with M, others alternate with seeds. Take either every 5 days. You may feel worse for a few days, but by day 3-4, you can record a decrease in hits or severity of hits. They may ramp back up on day 5 or 6, then you hit it again. As time goes on, you find a maintenance schedule that works for you. It is trial and error and you learn as you go. As you learn, you stretch out the time between doses to what works for you.

Tic Delaureux (sp) is now called Tri-geminal Neuralgia (sp). It is set off by wind, kiss, eating, etc. Very similar to what you are experiencing. But, I suspect yours come without external stimilus. Yep, they cut on ya for it if it becomes chronic. They used to hit the nerve with an anesthetic so that your painful side had no feeling for 6 months or so. Don't know if they still do that or not.

You are in a bad place and I feel for you. :'( At least here, you have people who understand part of what you are going through.

spiny

I would try the Vit M before I let them cut or anesthetize half of my face!!!

Read the threads regarding it and ask questions.

[massphotoman]

Wow, This post sounds so much like me except I am 43. I live in Marlborough MA. I have SUNCT and have been seen by Drs at Mass General, U-mass, and many more. I got an implant put in a couple of years ago in Peabody that has helped me a lot but not cured me. I still live in pain every day. I have a great Dr. at U-mass right now by the name of Paula Ravin. She was a headache specialist at NIH. I was first diagnosed by David Biondi at Mass General. He told me that he thought I had CH. But after trying so many drugs that is screwed my memory up and getting my implant they decided that I actually had SUNCT/CDH. They are idiopathic/asymptomatic. which basically means that they don't know what causes them and they don't know of anything that will help them. I just got my second round of Botox three weeks ago. It is not helping at all. I am still on more meds then I want to be on. My stomach is messed up very bad. It does not even work anymore and it hurts all of the time. I pass kidney stones all of the time. I have had a heart attack. There are so many things wrong with me now that I don't know what to do.

[MoxieGirl]

It would to be interesting to see if mushrooms helped. They all but stopped my migraines (43 a year down to 3), and broke my streak of clusters. And with no side affects (really) other than feeling drunk for a few hours.

Renee

[massphotoman]

MoxieGirl

   I will let you know what results I get, if I can get a hold of anything. Nothing has helped so far.

[Pixie-elf]

I am so sorry y'all are stuck with this, and really hope and pray vitamin M helps y'all with it. It's helped eliminate my migraines and CH.

Another natural herb is Skullcap. It helps with nerve pain, I don't know if it would help with the pain or not... But it may be worth a shot.

[Vickle]

I have sunct as well.  Not chronic.  It comes and goes when it wishes.  But has been ramping up along with my CH the last few years.  I am Chronic CH for the last 5 yrs. 

I was just put on Lamotragine (Lamactil for you US and UK folks :-D)  Low dose at the moment.  But it is reduced the severity and frequency of my sunct headaches.  I'm on a whack of other stuff too but that didn't help.  But I am not a fan of any scripts the docs give.  So I say Lamactil reluctantly.

[Mattrf]

I also have SUNCT and have been dealing with it off and on for 10 years now mostly on since I seem to get a year off between cycles and the last one lasted 4 years and this one just started. I also have tried just about everything including electroshock, not fun and did not help but boy it hurt. I know about six others that also have SUNCT and only one found a treatment that works for her but she stays in the hospital for a week on a Lidocain drip about once a month not something I could do and since I tried Lidocain and it only gave me relief while the IV was in my arm donÂ’t think it would help me.

I have found something that helps me and if you have not been on Olanzapine it is worth a shot. When I first went on it I had a week of 0 pain and it was a god send since I was literally at the end of my rope. But the drawback is the withdrawals if you stay on it to long are horrible worse than getting off pain meds by far. I have found that when my headaches start creaping in I can take the medication for 4 – 7 days then stop and so do the headaches but the medication will make you feel like a zombie and I have to warn the two of you here that also have this that the others I know have tried it and it did not work for them as it does for me, seems we all react differently to meds with SUNCT but it is worth a shot if you have not taken it yet and I pray it works for you. If either of you want to talk would be glad to add two more to my SUNCT contacts and can pass on the others I know to you, since there are so few of us with SUNCT we should stick together. You can contact me at Mattrf at Yahoo writing it funny incase the website strips out email addresses, hope to hear form you both.

Matt

[MoxieGirl]

OK, slightly_confused.com

Those of you with SUNCT, what would you say makes it different from Clusters? I never thought about someone having both!!

I wonder if that is me. I frequently get very short, bursts, of extreme pain that only last seconds to a 1/2 minute, sometimes 1-3 minutes. But then I also get full on clusters, but again they are usually short for a cluster, 5-20 minutes. And then again, but more rarely, clusters that last 30 minutes or longer.

But from what I've read of SUNCT, a person gets hit 20 - 40 times a day, I don't. 1-5 max.

Edited to add: Do those of you with SUNCT get hits during the night, or is that more a characteristic of clusters? I rarely get hits in my sleep, but when I do, it's a full on cluster that wakes me up.

MG

[Mattrf]

From my own experience and from what I have learned from the others that have SUNCT is that it is a little different for each of us and being there are so few of us the doctors do not even know what is normal. The only sure thing seems to be that it comes in cycles just like Clusters, it effects one side of the face around the eye just like clusters. I think the main difference is that SUNCT is not as intense but happens far more often, mine are 24 hours a day getting no break when it is happening it just changes in intensity from annoying to making me legs go limp at times but nothing like what I have seen of a cluster attack. My first cycle lasted about a year then a year off, my second lasted two years then again about a year off the third lasted four years then once again a little over a year off then started again about a month ago but so far the Olanzapine is keeping it at bay, so far. I also have a numbness on the left side of my face even half my tong is a little numb like when the Novocain from the dentist is just about worn off. But one of the people I know has a cycle that started nine years ago and has never gone into remission and his pain sounds more intense than what I have dealt with myself so again we are all a bit different it seems.

The pain tens to feel like something trying to push the eye out from behind or like a red hot needle being pushed into the eye but most of the time just a dull aching that drives me nuts not real painful but relentless, I go to sleep with it and wake with it but I can sleep and only sometimes get jolted from sleep from pain but it does happen just not too often thank God.

Matt

[MoxieGirl]

Hi Matt,

Thanks for the detailed information. Much of it sounds very familiar.

I'm pretty sure the numbness you are describing is your Trigeminal nerve, which is affected with clusters too. A friend of mine had Trigeminal Neuralgia, which is about the closest thing to a cluster you can get. She had her Trigeminal nerve disconnected, and the side of her face, tongue, etc. are numb as you described.

Hot needles in the eyes, yep, very familiar with that sensation. Pressure in the head, behind the eyes too. And it can be brief, like you say, just enough to make you stop and catch your breath, to making you sit down and eyes water.

Also like clusters, not exactly the same one person to the next.

Like I always say, life is what happens between attacks.

Hang in there.

MG

[Maria I]

Hello, I was also recently diagnosed with SUNCT. I'm an 18 year old female and was diagnosed about 1 year ago. I can say that I haven't found anything that works 100 percent, but I've found that at the beginning of an attack if I drink about a bottle or two of water within a short time period, it can reduce the pain. Unfortunately most medications don't seem to have much effect in treating SUNCT from steroids, to anti-seizure medications and high dose NSAID treatments, nothing has done me much good. I usually just get sick of the side effects and go off medication. The single attacks are much easier to handle compared to the saw-tooth attack pattern. My advice is to try to stay positive and enjoy the times where you aren't suffering the pain; try drinking water, move around when you get the headaches, lying down generally makes it more painful, and depending on the severity - if you are able to control your breathing try to do so it has a calming effect so you focus on the pain less. I'm sorry that I can't offer better advice, I'm still working on trying to figure this out for myself as well.

[Maria I]

I'd also like to add that SUNCT can cause extreme pain probably very close to that of Clusters; however, sometimes the pain is not nearly as intense. I've had attacks where i've been screaming, rocking back and forth, crying, shaking etc. which appears to be what cluster sufferers endure. There are the nicer attacks though, which can cause the tearing and a bit of a jolt but they can still be managed.

[didgens]

My son started with what i belived were CH's about 2 years ago. He was getting 2 - 4 in about a 6 week period of time in both the Fall and Spring.  Now he has had 3 in the last 10 days ,, I am terrified that he is building up to more ? and dont know what to do.  for the last week i had him take advil and claritin every night before he goes to sleep ,, did it help ? i dont know ?  but he didnt take it last night and woke up this morning with one he said wasnt as bad as the last 2.  Something else i am having him try is putting pressure on the inside of his mouth at the back behind his molars (there is a video and post about a doctor who preforms surgery to cut the nerves?arteries? that cause the pain drs. name is shevel you can read online) ,, anyway he said by putting pressure on the area it did in fact lessen the pain some. 

anyway Im just rambling here, sorry ,, Im so worried about him .. bottom line ?  My husband his father has SUNCT syndrom, which was not identified until my son started having cluster headaches, and his grandfater suffered from migraines ..

[MoxieGirl]

Hi Didgens,

May I ask how old your son is?

Migraines can be hereditary. The ones I have run in my family. All my siblings have them and our children. I've had them pretty much all my life.

Am pretty sure Clusters (including I presume SUNCT) can also be hereditary.

If they are proper clusters, I doubt (others correct me if I'm wrong) that Advil or Claritin will have any effect. Indomethacine works well on SUNCT, so perhaps there are some similar ingredients there (don't know). Indomethacine has no effect on clusters (as a rule).

I include 'as a rule' because in my experience, no to cluster suffers are alike. So I'm not going to say that Advil, Claritin or putting pressure on the roof of one's mouth won't help. But I've not heard it before as a general rule. If it works, go for it.

I would recommend getting oxygen and plenty of Red Bull to start with, and a doctor who has a clue to what clusters are and the best meds they can provide.

MG

[didgens]

he is 20, will be 21 in november. Started having these at 18. The pressure at the back of his jaw inside his mouth he said cut the pain by 50% last week so it seems promising. There is a doctor here in the states that will inject botox to certain muscles to see if there is any relief.  He has an appt with dr. Kudrow on the 22nd since this solstice seemed to trigger some nasty CHs'.  Im not giving up on the procedure dr. Shevel is doing in South Africa but want to see what other doctors here think and can offer first.   

[greeneyes87]

Replying on this old thread based on visit from new neurologist yesterday.  He thinks I have SUNA which is closely related with SUNCT but like Moxie said I feel like I have one foot in and one foot in clusters and also agree with Maria I in saying  I've had attacks where i've been screaming, rocking back and forth, crying, shaking etc. which appears to be what cluster sufferers endurw with nicer attacks,which can cause the tearing and a bit of a jolt but they can still be managed.  I still have all this pressure in my temple and eye that is constant for hours at a time though.  I do not have that many attacks per day and SUNA does not explain the 30min-1hr long attacks I have.  Dr. is wanting to start me on lamictal(lamotrigine) as a preventative.  There is very little I have been able to find regarding SUNA which is frustrating... I wasn't sure if anyone has previously been through this diagnosis before getting a CH diagnosis?  I know these things take time... just very frustrating.  I stopped the D3 and the Verapamil 1 1/2 weeks ago to see what would happen and the headaches are coming back.  My attack the other night was about a 6/7 and lasted about 30 min.-the worst one I have had in a while....

 

[krisd71]

On 5/15/2013 at 1:07 PM, Mattrf said:

 

First, I would like to say thank you to everyone here for the dedication you have to this forum. I have truly been in awe. Thank you.

 

I am so happy I ran across this thread. Since my dx, the more I was learning & reading, the more confused I became until now. I say that because I have experienced many different symptoms that have changed overtime. That said, when they changed, there would be one criteria & common experiences (even vice versa) that repeatedly made me question if it was the correct dx.

 

I remember reading about SUNCT & thinking this sounds just like what I was experiencing during the first year of my attacks (prior to dx).

 

I have Horner's syndrome in my left eye due to childhood cancer. There is a post here about Horner's & CH. So the right side has nothing to do with my CH. Due to Horner's I am legally blind in that eye. My CH is on the left. It started with my eye burning & watering, then runny nose, & highly agitated. Then the burn turns into a searing pain. I would describe it as ice pick or someone putting a cigarette out my eyeball. My eye eventually swelled shut & for the most part blind. It was excruciating to even touch it. But the searing pain would go away for short periods. I would put ice packs on it for 20 minutes at a time. It would take me about 3 days for me to recover.  First time it occurred my PC insisted it was an eye infection. I knew it wasn't. It happened about once a month for 3 months. Then it became more frequent. I started doing some research on clogged tear ducts & on & on. I finally saw the CH.  I discussed it with my NEW with my PC. She confirmed it. Neurologist confirmed it in August.

 

However, they had changed to severe eye pain but no swelling shut but drooping eyelid with a bit of puffiness in the corner of my eye. I also became slightly dizzy & had some nausea. That was like clockwork every 2 weeks at the end of the week. Until it changed again.

 

I started having attacks everyday but only in my eye. I was having several a day at random times that lasted no less than hour. About beginning of August, they found a regular time. One at 8 am & 10am lasting 2 hrs. Approximately 2-4 in afternoons that were much less intense & much shorter. And another one at 9pm. I would use the Zomig injection at night when I could no longer bear it. Which just made the next day worse.

 

My one lil demon decided to invite some friends 2 weeks later. Times did not change. When I thought it could not get worse, it did. I had a demon stabbing me in the ear, one stabbing my eye, & the other one stabbing the top of my head. And these pushed 3 hours.

 

I had the nerve block. They just kept getting worse. End of August, I have intense pressure behind my eye, it hurts to move my eye most of the time. I went back to neurologist and he acted like I was stupid because everything I have read says there is no constant pain. But he said it was the CH. My eyes became so sensitive to the sun that if I walked outside after noon without sunglasses it was like a hot poker being driven into my eye & would trigger on attack. Intense pain but shorter duration. I missed 3 months of work.

 

Neuro did not explain to me what to expect from my dx. Just tx options. He prescribed me Veramil. I explained that I was just taken off all my BP meds in May because my BP was extremely low & I had finally stabilized. I don't think he believed me bc I was having an attack while I was there & my BP was 200/100. I was only able to take one dose. I could not hold my head up much less walk. We tried the Topamax until I started having difficulty having a conversation & friends were telling me I wasn't making any sense when I would text. I refused the steroids because the last 2x I was prescribed a high dose of steroids it was not good. It had not been 6 months since the last dose that ended in an ER trip. My 1st visit he did prescribe the oxygen but I was unable to get it filled. Then he refused because I had not quit smoking in the 2 weeks between visits.

 

I dosed with vitamin M the 2nd week of October. I am still not PF but I am back at work. The day before I returned was the 1st day I was able to be in the sunlight without sunglasses.

I don't want to share that experience here in this thread but it made a significant difference.

 

After reading this thread, I think I understand that you can have SUNCT , CH, & SUNA concurrently. I had not heard about SUNA until today. I will try to find something about it which may help me understand this more.

 

I apologise for the long post. I just have not discussed my whole experience because most post I read don't seem to share some of my symptoms & I start second guessing myself.

 

Thank you for everyone who posted in this thread it was all good info & to know that I have not completely lost my mind (yet).

 

I apologise if my post is hard to follow. I tried to be as precise & to the point as possible. I have a tendency to leave out words bc my brain thinks faster than my fingers.