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Topic: SUNCT??? (Read 570 times) |
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KimberH
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Hello everyone I haven't written here in a long time but am really looking for support somewhere. These HA are driving me insaine.
Well enough whining and tell what is going on. I was here in the past with the horrible diagnosis of CH (sorry to you all). And I have suffered since 2002 without any preventives working and I have tried everything you have all advised in the past. Now the new diagnosis after two hospitalizations and a new Dr. exchanged. I am diagnosed with SUNCT. What little I have read it is hard to treat and there is no cure... I currently take Lyrica 100mg three times a day, Amitriptyline 75mg, and lastly Lamictal 50mg-and 25mg... Well I am tired from the sever stabes late into the evening (last night up till midnight)..I am tired, frustrated and the Dr. is done every treatment he can think of. Now I have a request into Mayo.
I want you all to know that sympathy is not an issue I understand what you all are going through day in and out. I was just looking for guidance...I don't want to be a bother but please any support would be great...Thank you everyone for taking the time to humor me in reading this...
Kim 
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vietvet2tours
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Re: SUNCT???
« Reply #1 on: Feb 4th, 2008, 8:47pm » |
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You took us on this ride at the fair before.
potter
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Kill em all let God sort em out
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KimberH
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Re: SUNCT???
« Reply #2 on: Feb 4th, 2008, 8:56pm » |
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 I am sorry that you feel that way. I am on a ride myself you know just like all of you just with a differnt diagnosis... I only hoped that some here might know where I am coming from... Do you think I like getting new diagnosis and being a Dr. test subject...I think not please just hear me out.................................................. 
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LeLimey
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Re: SUNCT???
« Reply #3 on: Feb 5th, 2008, 3:24am » |
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Indomethacin is extremely effective for SUNCT
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Charlotte
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Re: SUNCT???
« Reply #4 on: Feb 5th, 2008, 8:08am » |
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Hi, Kim, and welcome back. You sound much more together this time, so the meds may be helping some. My diagnosis has been difficult also, with the sunct or paroxysmal hemicrania and occipital nerve all more frequent and harder to treat properly than my ch.
Hang in there. You are a test subject, lol, no way around that. If you need to talk, pm me or catch me in chat in the evening.
Try to appreciate how much of yourself you get back as you adjust.
Charlotte
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| « Last Edit: Feb 5th, 2008, 8:17am by Charlotte » |
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Melissa
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Re: SUNCT???
« Reply #5 on: Feb 5th, 2008, 8:53am » |
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on Feb 5th, 2008, 3:24am, LeLimey wrote:| Indomethacin is extremely effective for SUNCT |
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I've never heard this before?? I know Indo. is effective for CPH, but not for SUNCT.
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LeLimey
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Re: SUNCT???
« Reply #6 on: Feb 5th, 2008, 11:44am » |
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on Feb 5th, 2008, 3:24am, LeLimey wrote:| Indomethacin is extremely effective for SUNCT |
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That'll teach me to post when my mind is elsewhere - I'm sorry and thank you Melly, you're right. I should have stayed well away from the keyboard this morning! ARGH!
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fubar
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Re: SUNCT???
« Reply #7 on: Feb 5th, 2008, 12:06pm » |
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According to Goadsby and Lipton, "Almost all reported cases respond to treatment with indomethacin"
-Fu
http://brain.oxfordjournals.org/cgi/content/abstract/120/1/193
A review of paroxysmal hemicranias, SUNCT syndrome and other short- lasting headaches with autonomic feature, including new cases
PJ Goadsby and RB Lipton
Institute of Neurology, National Hospital for Neurology and Neurosurgery, London, UK.
The short-lasting primary headache syndromes may be conveniently divided into those exhibiting marked autonomic activation and those without autonomic activation. The former group comprise chronic and episodic paroxysmal hemicrania, short-lasting unilateral neuralgiform headache with conjunctival injection and tearing (SUNCT syndrome) and cluster headache. These headache syndromes are compared with other short-lasting headache disorders, such as hypnic headache, and persistent headache with milder autonomic features such as hemicrania continua. Cluster headache is included with the shorter-lasting headaches to attempt a nosological analysis of these syndromes. The paroxysmal hemicranias are characterized by frequent short-lasting attacks of unilateral pain usually in the orbital, supraorbital or temporal region that typically last minutes. The attack frequency usually ranges from 5 to 40 attacks per day. The pain is severe and associated with autonomic symptoms such as conjunctival injection, lacrimation, nasal congestion, rhinorrhoea, ptosis or eyelid oedema. Almost all reported cases respond to treatment with indomethacin, but respond poorly to other treatments including other nonsteroidal anti- inflammatory drugs. A recent case study demonstrated the release of both trigeminal and parasympathetic neuropeptides during a bout of pain in the same pattern previously described in cluster headache. The SUNCT syndrome is a distinctive rare condition characterized by less severe pain but marked autonomic activation during attacks. Consistent with previous reports, the present case of SUNCT syndrome was intractable to therapy. The similarites of these syndromes suggests a considerable shared pathophysiology. It is suggested that the syndromes are sufficiently well established for inclusion in the International Headache Society Classification system and that trigeminal-autonomic cephalalgias should be classified as a group together. A proposed re- classification is presented.
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Melissa
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Re: SUNCT???
« Reply #8 on: Feb 5th, 2008, 12:10pm » |
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FU, that says "almost all". I don't see where that would mean "extremely effective".
MaryD has SUNCT, she tried indo and it didn't help her, from what I remember. It's been years since I've spoken with her.
Anyway, I always assumed treating SUNCT was a LOT of trial and error.
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LeeS
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Re: SUNCT???
« Reply #9 on: Feb 5th, 2008, 12:39pm » |
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Hey Fu – how are you doing? 
More recently, Goadsby et al said:
"One of the important clinical characteristics that leads to the diagnosis of SUNCT is the lack of response to indomethacin. In our cohort, oxygen was unhelpful in 100% of patients, and the indomethacin test showed no distinction between indomethacin and saline placebo in all patients"
Source:
http://www.ingentaconnect.com/content/bsc/hed/2007/00000047/00000006/art 00033
-Lee
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alienspacebabe
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Re: SUNCT???
« Reply #10 on: Feb 5th, 2008, 1:32pm » |
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on Feb 5th, 2008, 12:10pm, Melissa wrote:FU, that says "almost all". I don't see where that would mean "extremely effective".
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Yuppers... Indo did nothing for my EPH. Shrooms killed the cycle (and I haven't had one since then!) after one dose, however.
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Linda_Howell
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Re: SUNCT???
« Reply #11 on: Feb 5th, 2008, 1:45pm » |
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http://www.ninds.nih.gov/disorders/sunct/sunct.htm
Quote:| These headaches are generally non-responsive to usual treatment for other short-lasting headaches. Corticosteroids and the anti-epileptic drugs gabapentin, lamotrigine, and carbamazepine may help relieve some symptoms in some patients. |
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fubar
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Re: SUNCT???
« Reply #12 on: Feb 5th, 2008, 3:06pm » |
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Hey Lee!
Good to see ya.
OK, I was just quoting an old reference.... 1997 is ancient texts by our standards.
I was just trying to defend MiLimey
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KimberH
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Re: SUNCT???
« Reply #13 on: Feb 5th, 2008, 7:03pm » |
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Hello everyone, thanks for the wealth of information.
Quote:| Posted by: LeLimey Indomethacin is extremely effective for SUNCT |
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As for Indomethacin afraid to say did nothing for me, Nor did dilantin, Lyrica, prednisone, & verapamil, even O2. The list goes on and on... Quote: Thanks for the site information helped me a lot. Not to solve my headache saddly. I hope that Mayo has better answers then my doctors here...They have done there best I have just exhausted all methods of treatment.
Thanks again everyone for your support I am struggling to keep afloat day in and day out it means a lot...
Kim
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Lizzie2
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Re: SUNCT???
« Reply #14 on: Feb 6th, 2008, 1:21am » |
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Fu,
I read that article earlier today too - and at first I thought, "Oh so it does work for SUNCT" but then read back a bit. In the few sentences before where it says indomethacin is effective for almost all cases, it is talking about the paroxysmal hemicranias. Then in the next sentence, it talks about how this patient with SUNCT is refractory to treatment, similar to other SUNCT patients. I think it is the way the article is worded - it is very confusing. But if you break it up like this:
"The paroxysmal hemicranias are characterized by frequent short-lasting attacks of unilateral pain usually in the orbital, supraorbital or temporal region that typically last minutes. The attack frequency usually ranges from 5 to 40 attacks per day. The pain is severe and associated with autonomic symptoms such as conjunctival injection, lacrimation, nasal congestion, rhinorrhoea, ptosis or eyelid oedema. Almost all reported cases respond to treatment with indomethacin, but respond poorly to other treatments including other nonsteroidal anti- inflammatory drugs. A recent case study demonstrated the release of both trigeminal and parasympathetic neuropeptides during a bout of pain in the same pattern previously described in cluster headache. " (All about paroxysmal hemicranias.)
And then this:
"The SUNCT syndrome is a distinctive rare condition characterized by less severe pain but marked autonomic activation during attacks. Consistent with previous reports, the present case of SUNCT syndrome was intractable to therapy. " (Regarding SUNCT).
At any rate, aside from all that, I did read that certain anticonvulsants are helpful for SUNCT, such as topiramate (topamax), lamotrigine (Lamictal), and a few others. Not sure if that's already been said here - I kind of skimmed through the responses, but I did investigate whether or not indomethacin works for SUNCT, and I saw that it has not been found to be helpful, but perhaps certain antiseizure meds may help. Unfortunately, SUNCT remains difficult to treat for most.
Hope this helps,
Carrie
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KimberH
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Re: SUNCT???
« Reply #15 on: Feb 6th, 2008, 5:17pm » |
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Thanks Lizzie for clearing up that information on HAs. Quote:"The SUNCT syndrome is a distinctive rare condition characterized by less severe pain but marked autonomic activation during attacks. Consistent with previous reports, the present case of SUNCT syndrome was intractable to therapy. " (Regarding SUNCT).
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As for the anticonvulsants I have been on Topamax and lamictal without any success. I am glad that you all are working to help me out and I really appreciate it...Kim
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