Hi Denise

Has your son been seen by a headache specialist? With CHs being pretty rare most doctors have limited experience in dealing with them.

For your questions:
1. Not sure about others in Georgia but there will probably be some.
2. 8lpm is pretty low. Most people use higher rates to get quick, effective relief. I use 25lpm and I can abort a CH in about 6-8 minutes. If the doctor won't let you have a regulator that goes over 8lpm then you can buy one that goes higher.
3. The best preventive is the one that works for Eric. The most commonly used one is verapamil although other people here are using topomax, lithium or combinations. People with CHs typically use doses that are a lot higher than many doctors are used to using for the drugs primary use.
4. Amitriptline can also work as a preventive and there are people here using it. It was what I was originally given but I found I got significantly better results with verapamil.
5. I'd try using oxygen at a higher flow rate, at least 15lpm and higher if possible. Is he using a non-rebreather mask? Read the info on oxygen on the left for info about using oxygen effectively. Also ask about imitrex too, which can abort a CH quickly, but it can be expensive (look at the info on the left too for using this).
6. Alcohol is a very common trigger for most people, but otherwise it varies for people. In general, food does not tend to be a trigger.

Don't worry about long posts or lots of questions. People want to help and remember when they first came here and were in a similar situation.

Hey - Eric is seeing a nuerologist now, at first for migraines but now for CH.  I don't think he knows too much about CHs though.

Unfortunately, neurologists are not necessarily head ache specialists.

Thanks, clustermom.  I am going to ask for a blood test to look at the homones and testosterone factor.  I'm so afraid of all the medications because it seems to make the CH worse years done the road.  Is your son Episodic or Chronic?

Layla328 wrote on Dec 8^th, 2010 at 7:49pm:

The meds may not do that to you, but there is a LOT of anecdotal evidence to the contrary.

Only thing I know is that with me my HAs got out of control over many years with no meds (except O2), for me I gotta take meds now cause of the high frequency at night.  But I am all for anyone who can fight them with O2 alone--it's natural, etc and works well for many.

Mother Nature knows what she is doing!

I have read that sometimes conventional meds have made others cycles more protracted.  I will be curious if that happens with me now.  But definitely willing to make the gamble b/c the frequency per night had gotten too great, but i'm sure it is a gamble in some ways.

julyn wrote on Dec 10^th, 2010 at 4:35pm:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Potter wrote on Dec 10^th, 2010 at 4:53pm:


Simply brilliant.

"And a whole tray of flower remedies"

Hi Erics.Parents,

My son, like yours, was an athlete in H.S. He excelled in football, track and basketball. He started playing Pop Warner football when he was 11 and had his first cluster attack when he was 12 after the first season ended. He remained episodic through H.S. He only had one HA during a game and its severity was such that the game was stopped and the crowd was polled for Imitrex. A nice lady came to his rescue and after staying out for a couple of plays he was able to re-enter the game.

It wasn't till after H.S. that he became chronic. He's now 26 and until recently CH occupied his entire life. No work, no college, no social life, no friends. Nothing but CH. He went through the gamut of CH meds, some of which helped for awhile and some didn't. That all changed when I read an article in the journal Neurology which had a lot of anecdotal evidence to the effect that psychedelic drugs like LSD and Psilocybin could both stop a cluster attack in its tracks and prevent future attacks from occurring. These drugs became illegal during the Nixon administration as a counterattack to the anti-war hippies for whom these drugs were almost sacraments. Being an old hippie myself (I'm 64) didn't help much. It took several months to find a single dose of LSD. My son took 1/2 of that dose which apparently wasn't enough to cause any hallucinations but 6 hours later did cause my son's constant CH to completely disappear! The rest of his story is in the Topic 'Time for the 75-80% to stand up and be counted' in "Medications, Treatments, Therapies."

Subsequent to finding this website, I found ClusterBusters (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ), the sister site to this one which also has a forum (message board) and is devoted to alternative methods of "busting" cluster headaches through the use of both legal and illegal psychedelics. If you reach the point where traditional CH medications are no longer working and/or would like to learn about alternative methods of dealing with CH, please visit the website. Many members here are also members of ClusterBusters. Good luck to you and your son.

Ron

I am sorry to hear about your son. I became a CH Sufferer in my early 20's. I have my first child on the way and have thought about the genetic aspect of CH. The pain in yourself is unreal, I cannot imagine watching my child suffer the way you have. I pray that you will find answers soon and that he will find relief sooner.

dault