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anticonvulsants (Read 1688 times)
bwade1229
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anticonvulsants
Jul 3rd, 2010 at 1:01pm
 
I am a new diagnose. At first the doctors thought I had benign recurrent aseptic meningitis...6 spinal taps later...hahah I was diagnosed with CH monday. I was discharged from the hospital on zonogran 100mg every am, zanaflax 4mg every pm, medrol dose pack, demerol and phenergan PRN. Has anyone had success with the anticonvulsant/ muscle relaxer route. All of this was thrown at me so fast... and Im not sure what to think. I went from thinking I was stuck with meningitis for the rest of my life to now CH. Will i be on these meds for the rest of my life? Someone please help... My doc is very nice but not very good at explaining things.
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Brew
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Re: anticonvulsants
Reply #1 - Jul 3rd, 2010 at 1:49pm
 
You might want to suggest to him that you try a more traditional preventative approach to CH - one that has a better track record than anticonvulsants do (they work for a small minority of CH sufferers, but not many). Suggest something like verapamil, lithium, or a combination of the two.

And just a word to the wise: dump the narcs. The only thing they'll do long term is get you strung out.
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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bwade1229
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Re: anticonvulsants
Reply #2 - Jul 3rd, 2010 at 2:27pm
 
Havent used the demerol since i got discharged. anyway....

so there are people that have found success with anticonvulsants? I dont want to take something that isnt going to work or give up on it too quick
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Brew
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Re: anticonvulsants
Reply #3 - Jul 3rd, 2010 at 2:33pm
 
Yes, but I don't know of any doctors who actually know something about treating CH that would try this first.
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Bob Johnson
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Re: anticonvulsants
Reply #4 - Jul 3rd, 2010 at 3:51pm
 
This meds mix doesn't hit me as the work of a sophisticated doc dealing with cluster. The track record with anticonv. meds is still mixed, per medical literature, and, agree with Brew, that using the long established meds for Cluster would be a better starting point. Pain meds are not appropriate for CH.

Suggest you digest these two articles and use them as tools to discuss your options with the doc.
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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See the PDF file, below.
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Headache. 2006 Sep;46(:1246-54. 
 
Cluster headache: clinical presentation, lifestyle features, and medical treatment.

Schurks M, Kurth T, de Jesus J, Jonjic M, Rosskopf D, Diener HC.

Background.-Cluster headache (CH) is a rare but severe headache form with a distinct clinical presentation. Misdiagnoses and mismanagement among these patients are high. Objective.-To characterize clinical features and medical treatment in patients with CH. Methods.-We established a cohort of 246 clinic-based and non-clinic-based CH patients. The diagnosis of CH was verified according to International Headache Society (IHS) criteria. We used standardized questionnaires to assess associated factors as well as success or failure of treatments. Results.-The majority (75.6%) was not treated before at our clinic-77.6% were males; 74.8% had episodic CH, 16.7% had chronic CH, in the remaining patients, the periodicity was undetermined because they were newly diagnosed. Cranial autonomic features were present in 98.8%, nausea and vomiting in 27.8%, and photophobia or phonophobia in 61.2% of CH patients. Most (67.9%) reported restlessness during attacks and 23% a typical migrainous aura preceding the attacks. The rate of current smoking was high (65.9%). Half of the patients reported that alcohol (red wine in 70%) triggered CH attacks. Eighty-seven percent reported the use of drugs of first choice (triptans 77.6%, oxygen 71.1%) with sumatriptan subcutaneous injection being the most effective drug for acute therapy (81.2%). The most frequently used preventive medications were verapamil (70.3%) and glucocorticoids (57.7%) with equally high effectiveness. Conclusions.-Apart from the IHS criteria additional features like nausea/vomiting and migrainous aura may guide the diagnosis of CH. A large number of CH patients do not receive adequate treatments. (Headache 2006;46:1246-1254).

PMID: 16942468 


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Bob Johnson
 
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bwade1229
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Re: anticonvulsants
Reply #5 - Jul 4th, 2010 at 1:29pm
 
Thank you so much. I plan on going to get a second opinion because my first neurologist said it was recurrect meningitis, the one I am seeing now it seems does not know what he is doing. so I guess it is a third opinion i need. Does anyone know of any good neurologists in Richmond VA
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Brew
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Re: anticonvulsants
Reply #6 - Jul 4th, 2010 at 1:42pm
 
Here's the list of patient-recommended docs in VA (from the OUCH website):

Nurang Gill
Woodbridge

Dr. Steven D. Nack
Blacksburg

Stuart Stark
Alexandria

Dr. Alan Fenderson
Virginia Beach
.
Dr. Michael Mareska
Kara Clark NP
Mechanicsville/Richmond VA US

from:

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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