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?

Hi Jedi!

Welcome!   Steroid therapy is very effective for me while I am taking them.  The usual way they are prescribed is a tapering dose.  The dosage is high in the beginning then tapers off over time giving other preventative meds a chance to build up in your your system till they reach an effective level.   Some, I believe, have even had their cycle stopped by taking steroids.  


During cycles that have particularly bad, the steroid is only effective while I am taking them.  The HAs return as soon as I am tapered.

I hope you have success!

Jeannie

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. :)

Steroids tapers (usually with Prednisone) are pretty common. They work MOST of the time, but they are only temporary relief.  It's best to use them to give yourself a break while your doc is trying to get another med built up in your system to act as a preventative.  Common prevents are Verapamil, Topomax, Lithium, and others.  If your doc wants to do the steroid thing, I'd reccommend asking about a preventative med also.

O2 is a "must have" for most of us here.  Trex helps a lot of people too, but they can cause rebounds, and some don't like the side effects.  I'd suggest the O2 first, and Trex as a back-up.  

Best of luck, and PFDAN,

Adam

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?

A lot of insurances cover it. If they don't E-Tank rentals, (they're the size that'll fit in a soccer mom chair bag!!!) are about $4 to $5 a month, refills about $11-$13 so relatively cheap. And you'll need a regulator that goes to at least 15LPM, preferably to 25. Available on E-bay for less then $50.

Joe

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

I used steroids for the 1st time this year. I was on a short dose, which was not tapered. I was badly stuffed up and it really helped. I also got some much needed sleep. Felt wierd when I stopped taking them. Check out side effects. My Dr warned me that I might feel low.

Ellick

Think you will find it worth print the whole article as an introduction to CH. (Link on 2nd line.)
=========
 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (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]

Quote:

Just a suggestion:  Unless your doctor is a cluster headache specialist, he will not prescribe the appropriate type of oxygen treatment,

If I may interject here.  Kiritz..any physician with an M.D. after there name can and do prescribe the appropriate type of 02 treatment for their CH patients.  Of course we most definetly have to be educated ourselves and tell our Dr., print out info. to share with them, etc.  But to make a blanket statement that only an expensive HA Specialist  will give us what we need isn't accurate.   I am sorry if that happened in YOUR case.  I know it's frustrating.

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



                             Challening, More assertive... Coach Bill  >:(

Quick update - doc wants me to start 3 day course of DHE treatment before O2--he claims it will take a week for O2 anyway and he claims the IV DHE treatment will break the cycle.  Is this possible??  Also anyone know about the side effects and what to expect?  I know they told me I will be drowsy afterwards.

On another note, they asked me to have no immitrex w/in 24 hours of the treatment.  I stopped taking immitrex yesterday and while I suffered through an all day shadow and a mild attack last night, I feel pretty good today, virtually pain free.  I was using a lot of immitrex over the weekend and I just wonder if indeed it is causing rebounding HA?  Granted I slept more the last 2 nights (we have a newborn and my wife is taking him at night) so that may make a big difference too.

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

The two times I've been hospitalized for the DHE push treatment, the headaches came back with a vengeance for a week afterward. Then I had 9 months of totally pain-free time. But not before the beast had to rear its ugly head one last time.

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

Quick update - doc wants me to start 3 day course of DHE treatment before O2--he claims it will take a week for O2 anyway and he claims the IV DHE treatment will break the cycle.  Is this possible??  Also anyone know about the side effects and what to expect?  I know they told me I will be drowsy afterwards. On another note, they asked me to have no immitrex w/in 24 hours of the treatment.  I stopped taking immitrex yesterday and while I suffered through an all day shadow and a mild attack last night, I feel pretty good today, virtually pain free.  I was using a lot of immitrex over the weekend and I just wonder if indeed it is causing rebounding HA?  Granted I slept more the last 2 nights (we have a newborn and my wife is taking him at night) so that may make a big difference too.

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... :/