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Topic: cluster tic syndrome (Read 1645 times) |
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Liz04
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cluster tic syndrome
« on: Mar 21st, 2004, 2:05am » |
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30, diagnosed with trigeminal neuralgia four years ago, 1800 of neurontin...diagnosed this week with cluster tic syndrome...now placed on topomax.
I have read this site completely with no mention of this cluster tic...anyone heard of this??? or of topomax?
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miapet
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what doesn't kill me makes me stronger
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Re: cluster tic syndrome
« Reply #1 on: Mar 21st, 2004, 5:39am » |
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Liz,
I haven't heard cluster-tic before . . .but there is a lot of mention of topomax (we haven't used it). On the Medications etc board (two down from clusterheadache specific) there is a thread called dopeymax (topomax) and there are a lot more refs here . .
*positive energy and light*
miapet
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Clusterbusters Rock
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Bob_Johnson
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Re: cluster tic syndrome
« Reply #2 on: Mar 21st, 2004, 7:20am » |
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A search of PubMed shows only 22 hits, i.e., a rare and little reported syndrome. Looks like you need a sophisticated neurologist. Here are two abstracts; sorry they are so complex.
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2: Neurologia. 1997 Dec;12 Suppl 5:38-43. Related Articles, Links
[Unusual varieties of cluster headache]
[Article in Spanish]
Alberca R.
Servicio de Neurologia, Hospital Universitario Virgen del Rocio, Sevilla.
Atypical forms of cluster headache (CH) are characterized by the association of CH to other headaches and facial neuralgias. Cluster-tic syndrome causes headaches similar to CR and pains similar to trigeminal neuralgia. The disorder is usually of unknown nature and its course is either episodic or chronic. Carbamazepine together with medication for CH is the treatment of choice. A characteristic sensory aura usually develops immediatedly before the attacks of headache in CH-Migraine (CHM). These attacks respond dramatically to subcutaneous sumatriptan and the prophylaxis of CHM is that of CH. CH variant comprises different types of pain and responds to indomethacin. Other unusual varieties of CH are the subchronic and the combined forms, probably related to chronic CH. Finally, the characteristics of CH may be modified by its treatment and chronic abuse of steroids may change the evolution of an episodic CH into a chronic unilateral paroxysmal headache with resembles to but is different from chronic CR. This headache could be called transformed CH (TCH) and to the best of our knowledge the disorder has not been reported up to now. TCH goes undiagnosed and does not respond to the usual treatments of CH. Patients suffering from TCH are frequently sent for surgical treatment which is absolutely contraindicated. Withdrawal of steroids, which is difficult to accomplish, changes TCH into a the former and typical episodic CH, which can now be treated in the usual way.
Publication Types:
Review
Review, Tutorial
PMID: 9498855 [PubMed - indexed for MEDLINE]
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3: Arq Neuropsiquiatr. 1996 Jun;54(2):284-7. Related Articles, Links
[Cluster-tic syndrome: two case reports]
[Article in Portuguese]
Monzillo PH, Sanvito WL, Peres MF.
Departamento de Medicina, Faculdade de Ciencias Medicas da Santa Casa de Sao Paulo.
Two patients with cluster-tic syndrome are reported. The first, a 43-years-old man, complaining of trigeminal pain in the right side of the face, accompanied by homolateral autonomic signs, such as ocular injection, sweating and drooped eyelid. The cluster attack was triggered by chewing, shaving and washing the face. The periodicity of bouts was six months. The pain was relieved by carbamazepine (800 mg/day). The second patient, a 43-year-old man, with an excruciant, neuralgic pain in the left side of the face, accompanied by tearing, conjuntival injection, drooped eyelid, rhinorrhea, photophobia and phonophobia. The neurologic examination showed triggered points in the first and second division of the trigeminal nerve. The patient was treated with verapamil (160 mg/day) and prednisone (60 mg/day), with relief of his symptoms. The periodicity of bouts was once a year. The literature was reviewed and 37 cases previosly reported are considered. We conclude that there are two different groups of patients. In the first group, the patients had cluster and trigeminal bouts in different time. In the second group, with only nine cases, the patients presented both cluster and trigeminal type of pain at the same time, as in the two cases reported here.
Publication Types:
Case Reports
PMID: 8984987 [PubMed - indexed for MEDLINE]
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Bob Johnson
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Liz04
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Re: cluster tic syndrome
« Reply #4 on: Mar 21st, 2004, 3:04pm » |
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Thank you all for your time and replies. It still boggles me but reading and trying to understand it just a little more than before helps all the more. It seems that there are a lot of Cluster sufferers out there and not a lot of cluster-tic-syndrome..sufferers..which brings the question up for me..do people actually have it but go underdiagnosed?
Have any of you ever been diagnosed with true trigeminal neuralgia before? As for my case, on my mri you could actually see a bood vessel pressing on the fifth nerve. hmmmm
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UN_SOLVED
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I need a fully-automatic Imitrex injector !!
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Re: cluster tic syndrome
« Reply #5 on: Mar 21st, 2004, 3:15pm » |
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Cluster tic syndrome (for me) is just a full-blown cluster. What ? .... Does this mean that we all don't feel like an ice-pick is jabbing our eye ? I'm doomed !
Unsolved
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I'm STILL alive ?
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Liz04
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Re: cluster tic syndrome
« Reply #6 on: Mar 21st, 2004, 3:19pm » |
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Of course you are not doomed...
I'm just even more confused
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Liz04
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Re: cluster tic syndrome
« Reply #7 on: Mar 21st, 2004, 3:38pm » |
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My pain always starts in my neck, which for me is some what of a warning signal before it creeps up to my face and eye. I quickly spray and stretch my neck with flurimethane spray, prescribed by my doctor...it doesn't take the pain away but it helps...has anyone tried this before?
Secondly, does anyone have severe drooping and swelling of one eye at onset of an attack?
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pubgirl
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Liz
Drooping, swelling, tearing, reddening of the eye is one of the differential diagnoses of all the Trigeminal neuralgias. Large proportions of Ch sufferers get it, so don't worry, as far as we could call ourselves 'normal', that's normal!
Wendy
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