A doc or neuro who refuses to prescribe oxygen is criminally negligent or just ignorant. Neither is a good prescription for a CH'er. There is too much arrogance and stupidity in the doctors ranks for a CH'er to complacently sit back and accept "no" when requesting the most effective, risk and side effect free treatment for our condition. Here is a list of sufferer rcommended docs in North Carolina. Sack yours and hook up with one of these:

North Carolina

Asheville:
Dr. Morris Maizels
Blue Ridge Headache Center

Chapel Hill:
Dr. Alan Finkel
Carolina Headache Institute

Clyde:
Dr. Howard W. Palay
Mountain Medical Associates

Durham:
Dr. Timothy Collins,
Duke Health Center at Morreene Road

Raleigh:
Dr. Rhonda W. Gabr
Raleigh Neurology
Dr. David A. Konanc
Raleigh Neurology

Winston-Salem:

Dr. Paul G. Martin
Triad Neurological Associates

Sorry if that sounds harsh but the fact is when a doctor will not help you, whether out of ignorance or arrogance, it's critical to move on.  Wishing you some pain free time soon.

Joe

Yes Mr Muffin....I agree. We suffer from an ailment that medical science is ignorant of. If we ask for a script to see a damned traveling hypnotist....they should give it. Anything to bring us relief. Its not like we are asking for oxycodone or morphine. Its so stupid. I myself am taking a different approach. I am finding an "OE friendly" specialist first before I will even schedule. I myself have dealt with these for over 15 years with nothing more than OTC meds. (Outside of the couple of ER visits that brought me ZERO relief) Welcome to our community, I know that you don't wish CH's on anyone! But I also know how good it felt to FINALLY meet people who KNOW!

Your so right TIM...my wife tries to help but she has no idea what I am dealing with.I to have let her read some of the posts on here but she still doesn't understand.I greatly appreciate your help.You have a heart of gold Tim and god bless you for that. If there were more caring people like you and all the people on here the world would be a better place.So I will offer the same to you and everyone else if anyone needs to talk I will be here for you.I am a very good listener and I DO UNDERSTAND.Feel free to call or txt me @(828)460-8155.God bless you all!!!

Hello all....new here. Just joined. Just restarted my cycle of the you-know-whats after a remission of ten years. Really??? Having 3-4 a day right now, I think I am making up for lost time...lol.

Saw a neuro and gave me Flavo....a God-send of a drug. So ar it works for me. O2 helps, I think, but I am fortuate as I have access to pure O2 at work and can use it if need be.

I try to stay positive about this, but they effin' suck. I guess it's good to know I am not alone.

Thanks for listening to me ramble. 

Hello all. No pic yet yet but i'll work on it. I'm Ken and hope I found a good place to talk and maybe sometimes vent just a bit. I'm actually in the midst of a what I refer to as a 'cycle'. For the past four years I've gone through more that I really don't even tell my family. Yes I do see a ngist but that makes me almost feel like a test animal. Trying though. I'll try to smile though - 

I've been here before, but not for any sustained period of time.  Might as well introduce myself again.

The name is Steve.  Software Engineer.  33, Episodic (so far).  First cycle at 25, five year remission, second cycle at 30, three year remission, in third cycle now.  So far cycles have lasted 5 weeks, three weeks into this cycle.  All have started around this time of year.

Have been taking Remeron for Anxiety for about a year, and oddly, I believe this has knocked the cycle down a couple notches.  I've had three K8s this cycle, two of which were precipitated by alcohol right at the beginning of my cycle.  Everything else has been K6 or below (again, so far).

I started Batches regimen 4 days ago.  I had a k4-5 this morning, just bad enough to get me up from my desk and take it for a walk, but quite manageable.  Everything else since starting the regimen has been K3 or below... mild annoyances.

Anyway, good to meet everyone, again.  I'm going to make it a point to come back and visit more regularly if I have the luck of this cycle ending.

Hello all!

My name is Nathan and I live in sunny Phoenix, Arizona.  I'm glad to meet all of you although I wish it was under different circumstances!

I started having cluster headaches in my right eye sometime during the spring, just one or two a month at most, fairly short (like 45 min) so I didn't really worry about them.  Then in November, they became much more frequent, almost every day, and much longer (typically 2.5 hours).  I had days where I had as many as 4 (all of mine have been during the daytime).  Again, always in my right eye.  I've been out of work on MLOA for the last 3 months.

Let me say first just to reinforce what others have said, O2 is great at stopping the CH pain, for me typically within 15 minutes of starting it at 15ml/min.

Prevention is a much more complicated story.  Once I was finally diagnosed by a Neurologist I was prescribed Topramate.  It worked amazingly well.  No headaches of any kind.  The only problem was that after a few weeks I started acting a bit "stoned" all the time.  While I enjoyed it, it really wasn't a viable fix.

The next drug was Depakote.  It has done a pretty good job of eliminating the CH (if I get them they are brief and relatively mild).  Unfortunately, as a side effect (or it uncovered another underlying issue) - the Neurologist believes it is SUNCT.  This is occurring primarily in my left eye (99% of the time).  While not horribly painful, if you aren't familiar with SUNCT you get pain in your temple, right above, or in the eye (like someone is squeezing your eyeball or poking it), along with watering and drooping eyelid.  These only last a short time (as little as 5 sec and up to a few minutes) but they can repeat over and over again, which mine do.  I have a few hours a day where this doesn't much happen (although happily, sometimes the pain is very mild).  I also have many headaches through the day.

So the Neurologist added on Indocin.  That blew me up.  The CH came back in the right eye, the SUNCT continued, my eyes, especially my left eye, became very light sensitive, and I started getting headaches where it felt like the top of both eyes were on fire. 

Now, I still have the SUNCT, the headaches, but my left eye is more sensitive to light than it used to be and going from dark to light sets off painful SUNCT.  I've also had a couple episodes of the pain at the tops of my eyes (although not as painful as when I was on the Indocin.

Today I will be starting Verapamil along with the Depakote.  I think, though, that through the next few days I will be reading this board closely and taking notes - I thank you all for taking the time to post them!  It may be time for me to start driving this treatment more myself rather than relying solely on his treatment ideas.  I do wish I'd found this message board 2 months ago.

Just for the record, I've looked at some alternative treatments, but I'm not really comfortable at this time going down that path.

Hi Eimert and welcome

You say you've tried oxygen, but it's quite possible that you were using it at too low a flow rate, the wrong mask or similar. Read up about how we use it to good effect - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or . I can kill mine off in about 5 minutes using 25lpm and a non-rebreather mask.

You also mention using medications, however caffergot and sansert are very much old school, with others like verapamil and lithium being much more effective. Even if you've tried these before it is possible that you used them at too low a dose to be effective. For verapamil most people get relief at 360-480mg a day but some go to double that and more, which is a lot higher than is used for it's normal use to control blood pressure.

A lot of us are also getting great results using vitamin D3 - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or . It is easy to do and very effective.

The "100mg imitrex" sounds like you are using imitrex tablets. This is not the most effective form of imitrex for CH. Using the injections will kill off a CH in about 5 minutes, which is a whole lot less pain for you to endure.

Keep reading and you'll learn a lot, lot more...

Hello fellow Clusterheads!  My name is Jasin.  I'm 28 years old and have been an episodic Clusterhead for as long as I can remember.  I was only recently diagnosed with CH last year, and have been amazingly relieved to find out I'm not completely alone or insane. 

The first time I was given O2 in the ER and the CH went away, I can't even describe how it felt.  I laughed hysterically and cried at the same time.  As little as is known about CH and as minimally helpful as treatments are for it, it's still incredible to me that even this much is known.  I'm currently in cycle and trying the WaterX3 treatment.  I'm thrilled I have something I can try!

Thank you, for everything!

Welcome to the board Jasin. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for over 35years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 30 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Having it at home is critical as the faster you can get on it, the faster you can abort the attack. Read this link as it must be used correctly or it will not work

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

This link will show you how to get set up with welding oxygen:

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

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Hi I'm 21 years old started having clusters at 18 and just got diagnosed with them. I was prescribed sumatriptan injections. I didn't get the injections until after I was out of a cycle so I don't know how well/effective they are in treating clusters. Has anyone had success with them and how much do they cost you? Mine are expensive even with health insurance, I don't know how anyone can afford them long term.

My neurologist suggested taking riboflavin (B2) and magnesium as headache preventatives has anyone had luck with that combination and should I just ask my neurologist to write a prescription for oxygen?