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Topic: CH or SUNCT (Read 852 times) |
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Gator
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CH or SUNCT
« on: Nov 11th, 2006, 1:15pm » |
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I've read several times now where someone has said their doctor didn't know if they had ch or sunct. This post is in no way meant to be anything negative against people here with diagnosed with sunct. It is about the doctors who diagnose the disorder.
From looking at the headache clasification from the IHS, I can't see why there is such a problem. I can understand it being a toss up between paroxysmal hemicranias and ch as the duration of the attack can last long enough to enter ch range, but a sunct attack is measured in seconds - not minutes or hours.
Could some of the folks here diagnosed with SUNCT, please tell us what symptom(s) they have that would possibly confuse a doctor into not knowing? Again, this is not a slam/attack or anything negative on you. Just curiosity on my part.
From the IHS International Classification Of Headache Disorders 2nd Edition
SUNCT:
Diagnostic criteria:
A. At least 20 attacks fulfilling criteria B–D
B. Attacks of unilateral orbital, supraorbital or temporal
stabbing or pulsating pain lasting 5–240 seconds
C. Pain is accompanied by ipsilateral conjunctival
injection and lacrimation
D. Attacks occur with a frequency from 3 to 200 per
day
E. Not attributed to another disorder
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Paroxysmal Hemicranias:
Diagnostic criteria:
A. At least 20 attacks fulfilling criteria B–D
B. Attacks of severe unilateral orbital, supraorbital or temporal pain lasting 2–30 minutes
C. Headache is accompanied by at least one of the following:
1. ipsilateral conjunctival injection and/or lacrimation
2. ipsilateral nasal congestion and/or rhinorrhoea
3. ipsilateral eyelid oedema
4. ipsilateral forehead and facial sweating
5. ipsilateral miosis and/or ptosis
D. Attacks have a frequency above 5 per day for more than half of the time, although periods with lower frequency may occur
E. Attacks are prevented completely by therapeutic
doses of indomethacin
F. Not attributed to another disorder
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CH:
Diagnostic criteria:
A. At least 5 attacks fulfilling criteria B–D
B. Severe or very severe unilateral orbital, supraorbital
and/or temporal pain lasting 15–180 minutes if untreated
C. Headache is accompanied by at least one of the following:
1. ipsilateral conjunctival injection and/or lacrimation
2. ipsilateral nasal congestion and/or rhinorrhoea
3. ipsilateral eyelid oedema
4. ipsilateral forehead and facial sweating
5. ipsilateral miosis and/or ptosis
6. a sense of restlessness or agitation
D. Attacks have a frequency from one every other day to 8 per day
E. Not attributed to another disorder
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Hemicrania Continua
Diagnostic criteria:
A. Headache for >3 months fulfilling criteria B–D
B. All of the following characteristics:
1. unilateral pain without side-shift
2. daily and continuous, without pain-freeperiods
3. moderate intensity, but with exacerbations of severe pain
C. At least one of the following autonomic features occurs during exacerbations and ipsilateral to the side of pain:
1. conjunctival injection and/or lacrimation
2. nasal congestion and/or rhinorrhoea
3. ptosis and/or miosis
D. Complete response to therapeutic doses of indomethacin
E. Not attributed to another disorder
***Edited to add Hemicrania Continua.
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| « Last Edit: Nov 14th, 2006, 9:32pm by Gator » |
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Charlotte
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Re: CH or SUNCT
« Reply #1 on: Nov 11th, 2006, 1:33pm » |
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That would be me, and my diagnosis. The headache the neurologist observed started before the appointment and was continuing after, so to me that would eliminate sunct, which I understand to last 2 seconds to several minutes.
The headaches occurred with a frequency of more than 12 a day, and ramped up and down, which he may have interpeted as short individual headaches, but were just part of one headache - to me. In between headaches I was pf.
The attacks were eased but not completely eliminated or prevented by indocin, which was prescribed by my doc.
The actual headache changes somewhat with each herb or medication tried. The neuro prescribed neurontin which gave me edema on inner knees and elbows and emphasized the beginning and end of each headache, which at that time lasted 60 to 66 minutes with a pain free time of 60 minutes.
The f/u brought a prescription for verapamil & suggestion to drop kudzu, which I did. The verapamil did not work out for me, the neurontin did not work when I stopped kudzu, and after checking back in with my doc and getting an ekg because of vertigo, I'm keeping indocin and kudzu. (I had a stress test, and scheduled for echoe stress test 12-7, and I see the neuro again 12-5).
I asked the neurologist if it was an unidentified trigiminal autonomous cephalalgia, and he said, no, it was cluster headache or sunct. I also requested copies of the reports and initial said ch vs sunct, and follow up said sunct vs ch.
So, what do you think?
Charlotte
(Edited to update, clarify, and remove a few offensive words & phrases.)
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| « Last Edit: Nov 30th, 2006, 9:49am by Charlotte » |
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E-Double
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Re: CH or SUNCT
« Reply #2 on: Nov 11th, 2006, 2:38pm » |
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There are certainly variants to specified headache types.
I have what Dr. Sheftell (NECH) calls an icepick variant.
it is this one little fucker that literally thumps in one particuliar spot literally hndreds of times per day.
This started @ Dalcon lucky me.
Some headaches will almost fit into a category yet do not exactly thus the variant label.
Sunct is specific because of the autonomic features as opposed to idiopathic stabbing HA (icepicks) which are also for seconds and come in the hundreds to thousands yet do not have the autonomic features within the eye and can be scattered throughout the noggin. It is also responsive to different meds.
Sometimes it is difficult for even the biggest names to pick them apart yet for the most part there are clear cut differences.
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Charlotte
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Re: CH or SUNCT
« Reply #3 on: Nov 11th, 2006, 6:45pm » |
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Please, anyone else with sunct as a dignosis or possible diagnosis or a part of a diagnosis, please check in and help me understand how this neuro came to this conclusion or lack of conclusion, and how sunct affects you and how you treat it.
Thank you from the bottom of my heart.
Charlotte
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pubgirl
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Re: CH or SUNCT
« Reply #4 on: Nov 11th, 2006, 7:45pm » |
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Charlotte
SUNCT is a bit of a bugger I'm afraid. There are several of the shorter-lived headaches which are very similar and SUNCT and CPH/PH often get confused as the symptoms are almost identical apart from the autonomic symptoms in SUNCT being more extreme.
The other major difference is why SUNCT is a bugger, it doesn't usually respond to indomethacin, which all the other shorter-lived headache types do. I have talked to one sufferer who got some relief with gabapentin but not total I'm afraid.
This is Prof Goadsby on the subject:
Short-lasting Unilateral Neuralgiform Headache with Conjunctival Injection and Tearing Syndrome.
The clinical features of short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing (SUNCT) syndrome have been reviewed in 50 patients reported in the English language literature. SUNCT syndrome is a rare condition that predominates slightly in men. The average age of onset is 50 years.
It is characterized by strictly unilateral attacks centered on the orbital or periorbital regions, forehead, and temple. Generally, the pain is severe and neuralgic in character. The usual duration ranges from 5 to 250 seconds, although the reported range of duration is 2 seconds to 20 minutes. Ipsilateral conjunctival injection and lacrimation are present in most, but not all patients.
Most patients are thought to have no refractory periods and this has probably been unreported in the past. Episodic and chronic forms of SUNCT exist. The attack frequency varies from less than one attack daily to more than 60 attacks per hour. The attacks are predominantly diurnal, although frequent nocturnal attacks can occur in some patients. SUNCT was thought to be highly refractory to treatment.
However, recent open-label trials of lamotrigine, gabapentin, topiramate, and intravenous lidocaine have produced beneficial therapeutic responses. These results offer the promise of better treatments for this syndrome, but require validation in controlled trials.
Wendy
sorry just added a dopy post thinking you were in the UK and have deleted it!
Additional thoughts are that your attacks look a little long for SUNCT. Have they definitely ruled out PH/CPH? Perhaps your Indo dosage wasn't high enough so it helped but not completely??
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| « Last Edit: Nov 11th, 2006, 7:58pm by pubgirl » |
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pubgirl
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Re: Indo dosage
« Reply #5 on: Nov 11th, 2006, 8:01pm » |
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re,e, the Indo dosage - this may help (from PG again):
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A good clinical history by your GP or a detailed examination by a Neurologist and then a therapeutic trial of indomethacin are all that are necessary to make a diagnosis of PH. As a relatively high number of symptomatic cases have been reported, an MRI scan of the brain should be routinely performed in all patients with PH. The therapeutic trial of oral indomethacin should be initiated at 25 mg three times daily; if there is no or a partial response after 10 days, the dose should be increased to 50 mg three times daily for at least 10 days; if the index of suspicion is high then the dose should be further increased to 75 mg three times daily for 10 days.
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Complete resolution of the headache with an appropriate dose of indomethacin is prompt, usually within 1–2 days of the effective dose. The typical maintenance dose ranges from 25–100 mg daily, but doses up to 300 mg daily are occasionally required. Skipping or even delaying doses may result in the prompt reoccurrence of the headache. In patients with EPH, indomethacin should be given for slightly longer than the typical headache bout and then gradually tapered. In patients with CPH, long term treatment is usually necessary; however, long lasting remissions have been reported in rare patients following cessation of indomethacin, hence drug withdrawal should be advised at least once every six months. Gastrointestinal side effects secondary to indomethacin may be treated with antacids, misoprostol, histamine H2 receptor antagonists, or proton pump inhibitors and should always be considered for patients who require long term treatment. The mechanism behind the absolute responsiveness to indomethacin is unknown. It appears to be independent of indomethacin’s effect on prostaglandin synthesis, since other NSAIDs have little or no effect on PH. For patients who cannot tolerate indomethacin one faces a difficult challenge. No other treatment is as consistently effective. We, and others, have tried COX-2 inhibitors and verapamil with limited success
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_UNsolved
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I also wanted to add that "Ice pick" headaches are called "Cluster Tic Syndrome" by MHNI's definitions.
There is also another form of headache that exist that I've never heard anyone mention anywhere .... except my neuro....It's called "Thunder Clap Headaches". These are also terrifying and extremely painful. I experienced these for about a 1 week period (I guess the CH attacks grew out of control possibly because of medication cocktails I was on at the time). In my case, the symptoms were different from a CH in only 1 way. I would always wake to this type of 'headache' with a very loud explosion sound (Like a nuke just went off) and the X treme pain would begin. It was totally insane. I begged for DHE infusions within the first week. The attacks reverted back to the normal CH attacks. No more explosion sounds since ... thank goodness
http://www.mayoclinic.com/health/thunderclap-headaches/DS00644
UNsolved
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chewy
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Thunder Claps have been mentioned here a few times although I have never heard of an actual diagnosis.
Historically this board has seemed to be light years ahead of the neuros though so more TC diagnosis may start to pop up.
Do you attribute the short duration of the Thunder Claps to the DHE treatment?
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UN-solved
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The DHE stopped the attacks and the thunder clap headaches never returned (if indeed, that's what it was)
I attribute the start of those type of headaches possibly to Depakote & Topamax. of course, no proof.
UNsolved
PS. waking up every morning to what appeared to be a nuclear explosion is quite terrifying to say the least. It had to be stopped one way or the other quickly.
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| « Last Edit: Nov 12th, 2006, 9:24am by unsolved1 » |
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Lizzie2
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Re: CH or SUNCT
« Reply #9 on: Nov 12th, 2006, 12:19pm » |
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This is from one medical journal article in July of this year:
Quote:1: Lancet Neurol. 2006 Jul;5(7):621-31. Links
Thunderclap headache.
Schwedt TJ,
Matharu MS,
Dodick DW.
Department of Neurology, Mayo Clinic College of Medicine, Scottsdale, AZ 85259, USA.
Thunderclap headache (TCH) is head pain that begins suddenly and is severe at onset. TCH might be the first sign of subarachnoid haemorrhage, unruptured intracranial aneurysm, cerebral venous sinus thrombosis, cervical artery dissection, acute hypertensive crisis, spontaneous intracranial hypotension, ischaemic stroke, retroclival haematoma, pituitary apoplexy, third ventricle colloid cyst, and intracranial infection. Primary thunderclap headache is diagnosed when no underlying cause is discovered. Patients with TCH who have evidence of reversible, segmental, cerebral vasoconstriction of circle of Willis arteries and normal or near-normal results on cerebrospinal fluid assessment are thought to have reversible cerebral vasoconstriction syndrome. Herein, we discuss the differential diagnosis of TCH, diagnostic criteria for the primary disorder, and proper assessment of patients. We also offer pathophysiological considerations for primary TCH.
PMID: 16781992 [PubMed - indexed for MEDLINE] |
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I bolded the one section. It's important to note that thunderclap headaches can signify a very serious medical event - and they should never ever be ignored - especially not the first one. This is why the ER docs ask, when a patient presents with headache, if it is the worst headache of your life. They are looking for the diagnosis of thunderclap headache.
3 years ago or so, my former neurologist did a paper that I helped edit on the incidence of thunderclap headache and unruptured aneurysm.
While not all thunderclap headaches have secondary or ominous causes - they must always be ruled out - with even more urgency than clusters or many of the other headache types, IMHO - because truly a thunderclap headache could be the warning sign of an unruptured or leaking aneurysm....it's just very important never to ignore these.
And in reality, any change in headache type, location, sudden changes in frequency, etc - all should be mentioned to a doctor or other health professional.
PF wishes!
Carrie 
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Lizzie2
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Re: CH or SUNCT
« Reply #10 on: Nov 12th, 2006, 12:21pm » |
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on Nov 12th, 2006, 9:22am, UN-solved wrote:The DHE stopped the attacks and the thunder clap headaches never returned (if indeed, that's what it was)
I attribute the start of those type of headaches possibly to Depakote & Topamax. of course, no proof.
UNsolved
PS. waking up every morning to what appeared to be a nuclear explosion is quite terrifying to say the least. It had to be stopped one way or the other quickly. |
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Lithium can cause little lightning burst headaches for some people. It would be interesting to note if there is a similar headache type for some people on depakote or topamax... Interesting!
Glad you got rid of them, though!
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nani
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Re: CH or SUNCT
« Reply #11 on: Nov 12th, 2006, 12:25pm » |
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I had a thunderclap HA when my aneurysm burst. Never had one before or after.
One of the newsletters has a question to Dr Rosen, that addresses the question of whether some of us have co-existing HA types. Many of us do, and it's often undiagnosed. Since busting, my hits (which I get very rarely) resemble PH because the duration is only 5-10 minutes. My guess is that drs have a hard time diagnosing properly because some of us have symptoms that resemble all the TAC HAs. (I get the icepicks, also)
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jon019
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Not sure what to think here. 3-4 cycles ago experienced the scariest of what I can only describe as a variant of CH. Per Mikes post don't think it was SUNCT or PH. Per Carrie, perhaps thunderclap.
Strange cycle all the way around. 1-3 "normal" hits per day (usually 5-10 hits) but once per night at a "regular" time got hit by a kip 10 that started almost instantly (5 secs),temple centered, lasted 1-2 minutes and was GONE. Have no idea of other symptoms because it was impossible to observe. These hits seemed to confer "safety" for 12 hours or so from any other hits (which is similar to regular kip9-10's in a "normal" cycle. Damned scary, sure it was a stroke or broken aneyurism, and the only time I ever considered going to ER, but then, they were gone and what was I going to present to them.
Was on verapamil at the time. Mentioned to the neuro. She just shrugged. They haven't reoccured.
Jon
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Charlotte
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Re: CH or SUNCT
« Reply #13 on: Nov 13th, 2006, 8:46am » |
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What I think the neuro is calling sunct is what I consider to be irritation of the ends of the trigiminal nerve which I use as a gauge for when to take meds. A Dr. Bratt taught me to do this in 1995. He is the one who told me I had ch (because I had a certain headache at exactly the same time each day) but included it in a diagnosis of "combination vascular headaches", at that time.
Both Indocin and neurontin helped ease the current headaches, but when I stopped taking kudzu for awhile, the indocin still helped and the neurontin no longer helped.
Charlotte
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| « Last Edit: Nov 13th, 2006, 9:14am by Charlotte » |
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Charlotte
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Re: CH or SUNCT
« Reply #14 on: Nov 30th, 2006, 9:34am » |
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I asked KPEricPA on the Kaiser headache message board to please explaine to me how ch & sunct could be confused by a neurologist, and this is his answer. It still does not help me specificaally. If I have sunct, it is included within the specific 12 to 66 minutes of the ch type hit and not occurring separately. And the frequency is more than 8 a day so it would make a neuro think not ch. I will print out this specif thread and take it with me to the neuro.
I see the neuro again on 12-5 and have an echo stress test on 12-7. If anyone has specific questions or verbal illustrations or hints I can give the neuro, please pm me or post here. I would really appreciate it. Currently, I am once agian using only kudzu and indocin.
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Posted by: KPericPA
Date: 10:28am Nov 26, 2006 PST
Message: #97 of 106
Charlotte,
Ordinarily we refer people to online resources for information, but your questions about SUNCT & Cluster headache are so technical (and rare) that I'll address them here:
SUNCT: at least 30 attacks of one sided moderately severe orbital or temporal stabbing or throbbing pain lasting 15-120 seconds.
Frequency: 3-100 x daily
Associated with red eye, tearing, nasal congestion, runny nose, eyelid swelling or drooping
Cluster:
At least 5 attacks of severe one sided, orbital or temporal pain lasting 15-180 minutes (untreated).
With red eye, tearing, nasal congestion, runny nose, facial sweating, enlarged pupil, droopy or swollen eyelid
Frequency: 1 every other day to 8 daily
Reference: Headache in Clinical Practice. Silberstein et al. ISIS Medical Media.
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Thank you, Charlotte
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| « Last Edit: Nov 30th, 2006, 9:39am by Charlotte » |
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Mattrf
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Re: CH or SUNCT
« Reply #15 on: Nov 30th, 2006, 1:53pm » |
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I have been diagnosed with SUNCT, I think one of the misleading things that you get when you read about SUNCT is that they focus on the short attacks that last seconds making it sound like that is all that happens. What I don’t see but has been confirmed by three specialists including Dodick at the Mayo is that the short stabbing headaches are accompanied by a consistent headache that just does not go away.
Mine is like this, I wake up several times a night but by the time I am awake the stab that woke me is gone, but I do have that dam headache that wont go away, the good side is that it is not intense enough to keep me awake and I can fall back asleep. When the alarm goes off and I get out of bed the headache starts ramping up, I typically am at anywhere from a 2 too a 5 at this point and with pain meds I can get it down to a 2 or less and that is manageable but it never seems to go away completely. During the day I get the short ice pick stabs and burning stabs anywhere from 30 too 80 times a day and they are typically at about a 5 or 6 but remember I am on the pain meds so without them it would probably be higher. I have been told by the doctors that like CH it comes in cycles, my first was about four years ago and lasted 9 months, this one started in December of last year and has shown no sine of going away at this point. I have been treated with all the CH meds and all the Migraine meds and all the stuff that is supposed to help with SUNCT but none of them have worked, a couple helped but the side effects got so bad that I had to stop taking them. The hardest part is the consistent pain, over time it just really beats the crap out of you, I don’t think that you can compare SUNCT and CH, they are both horrible I also don’t think you could say one is worse then the other, hell is hell no matter how you look at, know what I mean? I don’t know if I could handle the pain you guys go through and the lack of sleep, but at the same time I have no idea how I get through every day with SUNCT.
The one thing I can say is now that my doctor has decided to stop trying all these medications and just treat my pain I am much happier, the main side effect I got from most of the meds was irritation and anger, so I am finally feeling more like myself and not looking to bite the head off of anyone that looks at me cross-eyed.
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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