Hey everyone I'm new here, been suffering from episodic CH for about 15 years.  Aborting currently with immitrex and haven't tried O2 yet but will be seeing my neurologist again today and will ask him.

My question--last visit my doc said to call him if the attacks get worse and we could try a course of steroid therapy.  Has anyone tried this and how effective is it?

Just a suggestion:  Unless your doctor is a cluster headache specialist, he will not prescribe the appropriate type of oxygen treatment, which is at least 15 liters per minute in a non-rebreathing mask.  My suggestion is that YOU read all the relevant instructions on this message board regarding oxygen, and YOU tell HIM what is required.  As an example, a few years ago I had O2 prescribed by my excellent internist.  He prescribed 7 liters per minute and the supplier gave me an oxygen concentrator device instead of a tank.  The oxygen was completely ineffective.  This year, thanks to this board, I told my doctor what worked for people, and was able to get the right equipment and flow levels.  Presto!  The oxygen is extremely effective.  Good luck.

Thanks for the info--I actually am currently on verapamil as a preventative, so I'm not sure why he is suggesting a steroid treatment if it is just a bridge to get the preventative to kick in.  The verapamil obviously is not doing the trick.  Our firstborn arrived on January 28th and the crazy sleep patterns (lack of sleep patterns, rather) since then have sent this episode into uncharted territory.

My doc is a headache specialist and I did read up on the specific instructions for O2 use.  One thing I have not seen--how much is it to get started using O2?

Congrats on the new baby!

How much Verap are you taking?   I have had cycles that were helped with 360mg.  Other times it didn't touch it.  Last cycle I began taking the Verap BEFORE my first HA.  I then only shadowed heavily for about 4 1/2 months.   It took me a while to wean off of it then had some rouge hits in between.

Jeannie

Think you will find it worth print the whole article as an introduction to CH. (Link on 2nd line.)
=========
 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article 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]

Preds... The little pink pill.. Gotta love em.



                             Challening, More assertive... Coach Bill 

I don't have any experience with DHE.  I hope it works for you!

The more Trex I use the more HAs I get.  I really believe that it makes my cycles worse.  I can't say I'll never used it again though.  I'm not that strong.  I'll try to avoid it though.

Good luck!

Jeannie

crouchingjedi wrote on Feb 17^th, 2009 at 12:20pm:


DHE is a vasoconstrictor, that's why they don't want you using it together with the trex. It'd vasoconstrict too much, and could cause other problems.

I'm not sure if the DHE is stronger than the trex or not, maybe someone else can answer this? I do know a lot of people on here have had rebounds due to too much trex use.

I can't use it, so I dunno. I'm praying my headache specialist will say DHE is an option for me, I've got 3 months til I'm declared chronic... :/