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Thanks for Listening! (Read 699 times)
jade
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crown jewel


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Northern Delaware, USA
Gender: female
Thanks for Listening!
Feb 12th, 2011 at 11:58am
 
Hi! When I was 13, I was diagnosed with CH by a neuro.  They seem to have returned after many years’ absence.  I was just diagnosed again in the ER on 2/8.  I also have multiple sclerosis and schizoaffective disorder (bipolar type with a seasonal component).

I am on Lamictal, Geodon, Abilify, Wellbutrin, Trazodone, Buspar, and Copaxone.  I think the Lamictal is helping the severity of the pain.  Imitrex oral didn’t help.  In the ER they gave me O2 and Compazine.  I am still taking Compazine, which is helping dull the pain.  Also, I am sleeping with my head elevated, am using chiropractic, ice, the coldness of the winter air, and Biofreeze.  Each of those things helps.  The pain is bearable at the moment and I have not vomited in about 36 hours!

My social support is great.  I have a funny, understanding, and sacrificial husband and loving friends and family who are praying for me.  But I love sharing trials with similar sufferers!

I have an appointment at the Jefferson Headache Center in Philadelphia in April.  Does anyone recommend a particular doctor there?
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I count these headaches as joy for they are producing steadfastness.
 
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Bob Johnson
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Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: Thanks for Listening!
Reply #1 - Feb 12th, 2011 at 12:50pm
 
I'm comforted that you are going to Jefferson for they will have the skills to balance the meds/treatment of your demanding Dxs.

May find it useful to read the PDF file, below, and print out the entire article, which follows. Will give you some ideas to inform your disucssion with your new docs.
=======



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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Bob Johnson
 
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Mike NZ
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Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: Thanks for Listening!
Reply #2 - Feb 12th, 2011 at 3:32pm
 
Hi Jade - that's a real complex mix of medication you're on, so seeing a neurologist who is specialised in headaches, possibly working with your other doctors is essential.

How did the oxygen help? Often in hospital they will provide a low flow rate via either a standard face mask or nose canulas which are not too effective. What works a lot, lot better is a high flow rate (15lpm or higher) delivered via a non-rebreather mask. Using this configuration at 25lpm I can be pain free in around 5-6 minutes. And it is unlikely to cause any issues with your other medication (I say unlikely as I'm not a medical doctor or a pharmacist).

Is there any possibility of getting a quicker appointment? April seems to be a long way away given the pain that CHs inflict before you get effective treatment. Have you asked about cancellations, etc to try to get there sooner?
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Guiseppi
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San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: Thanks for Listening!
Reply #3 - Feb 12th, 2011 at 6:34pm
 
What Mike said...and welcome to the board! Wink Misery does love company huh? While I'm thinking of it, encourage hubby to visit the supporter section. A lot of supporters hang out there to bitch about what a pain us CH'ers can be when we're getting hammered. Lord knows our supporters need support too!

33 year episodic CH'er. For me, nothing touches oxygen for speed of abort, inexpensive for cost, lack of side effects, and lack of contraindications with the other meds you're on. When you get a few minutes, read this link. Should answer any questions you might have. Has really saved a lot of people around here.

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Glad you found us, you've got a full plate, hang in there.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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