Hello all, I just joined the boards here but I hope to be an active member. I'm a 20 year old student, a creative writing major from the South-East. I also work as a lawyers assistant. I've had Cluster Headaches for about 4 or 5 years now. I generally have about 2 or 3 cycles a year and they last generally 2-5 weeks. My C-headaches don't occur at night like most peoples do I hear, I have mine at about 1:00-1:30 P.M. Anyways, it took me a number of years to find out that it was CH that I was afflicted with. Since then I have done a great deal of research on them and I even wrote a paper in Psychology about their affect on life-span development. So far I have taken Verapamil, which I stopped taking having read that it causes irregular heart functioning. I also take vicodin or loratab whenever I get a CH. I also have found that smoking marijuana helps alleviate the pain. I havent tried pure oxygen yet but I hear that sometimes it will only delay an attack.

Anyways, what do most of you find helps most with your Cluster Headaches?

Thanks in advance.

I use high flow O2 to abort 95% of my hits, DHE-45 injections for the rest.

For preventatives, Verapamil, Lithium. The 3 things you are using are triggers for me and most people on this site, from what I've read.

Read around the site and you will  find most of the answers you seek, if not ask questions.

Good Luck,  Don

Welcome!  Pain medicine will not help with cluster headaches!  It will just cause another problem!  Life-span development?  What do you mean?  Have you been diagnosed by a headache specialist?  Tell us more about your headaches.  Verapamil is the lead Rx for CH.

You'll find O2 to be extremely popular around here, probably the most popular abortive amongst the rank and file members.

So that is something to sit up and take notice of, because there has been a LOT of comparing notes and figuring out what is most effective.

If the O2 doesn't work for me, or isn't accessible, I will use a 1/2 dose imitrex injection, or in a real pinch, imitrex nasal inhaler to abort an attack.

I probably would've tried sub hallucinogenic doses of psilocybin by now as a preventative (now THERE'S something to research), but knowing when my episodes are going to occur (or at this point, after 30 years of CH, IF they are going to occur) has become very unpredictable, so knowing the timing for when to order spores and wait around for them to grow into mushrooms hasn't been something that has worked out yet.

From what I've seen, opiates and marijuana are some of the least effective remedies for most clusterheads, with the opiates generally regarded as a mistake.

Welcome!

I have O2 ready to go, but have yet to use it since i'm not in cycle.  Otherwise, rivea corymbosa seeds are my prevent.  Energy drinks with 1000mg taurine, 4-way nasal spray works sometimes and if desperate,  Imitrex injections.  Melatonin at night as a sleep aid.  I must be careful though because it states that sumatriptan and melatonin can interfere with how the LSA in the seeds work while in cycle. 

Just keep reading, you'll learn a ton real fast.  We are all here to help and answer questions.

Cheers,
Chad

Hi,

As long as you have regular ECG's with the Verapamil, you should be fine. I used to take it, but unfortunately I was diagnosed with Hypertrophic Cardiomyopathy (not related to the Verapamil) and found it worked for me once it had worked it's way into the system (around 2 weeks).

I am now on 15lpm oxygen with a non rebreather mask and have found it works very well, aborts within 10-15 minutes, then I stay on it for about another 5 minutes at a lower flow rate.

I'm waiting on an appointment to see the neurologist in London to see what else I can take with my heart condition (if any at all).

Caron

jp783,
I have had clusters since 1977 and have been on just about every medication and treatment known to man. There hasn't been any drug that worked for me. Pure O2 is the answer, at least it is for me. It will abort 99% of my attacks.
These things have a mind of their own and not everything works for everybody. You need to find what works for you. Try O2 asap, and see if it is your answer too.
Post a link to your paper. I would like to read it.

25 lpm oxygen with an O2ptimask.  Well worth the small investment in the mask.  I can usually kill a hit within 5-8 mins.

I use Kudzu as a prevent.  Verap is safe to use if monitored properly.  I quit using it because of side effects and found that Kudzu works as well for me and without the lethargy and logginess I had with Verap.

Leave the Vicodin alone!  By the time it gets into your system you are probably about over the hit anyway.  Even if you were able to get it quickly enough I've not found that opiates do anything at all other than get me hooked.

Jerry

O2 is great.......opiates are terrible......verap is helpful with ecg......Hmmmm.....let us critique your paper?

o2

Best thing for me

All the best, Iddy :)

Here is my paper for those who wanted to read it.

A cluster headache is a neurological disease, which afflicts approximately 0.1 percent of the population today.  Originally named Horton’s Neuralgia after Dr. B.T. Horton, the cluster headache is also nicknamed the “suicide headache.” Statistically, men suffer more often from cluster headaches than women do. The term “cluster” refers to the tendency for these headaches to occur in a set period of time. These active clusters are then generally followed by sporadic remissions. Women who suffer from the condition will tell you that an attack is worse than childbirth, thus, experts suggest that cluster headaches could be the highest level of pain known to medical science. The direct cause of these excruciating unilateral headaches is unknown, although scientists believe it could be due to an abnormality or damage in the hypothalamus. In this paper I will assess the developmental issues associated with cluster headaches, I will also assess the symptoms, prognosis, and treatment options.
     Living with cluster headaches can be extremely difficult; the debilitating attack can often seem unbearable. Sufferers often experience extremely high levels of anxiety and depression. Cluster headaches can directly affect interaction with family, friends, productivity at work or in school, and your overall quality of life. Whenever an attack is imminent, sufferers generally seclude themselves from others. People who are experiencing an attack will often do anything to alleviate their symptoms. Common symptoms of a cluster headache include, reduced pupil size, stuffy or runny nasal passage in the nostril on the affected side of your face, drooping eyelid, excessive tearing, redness in the eye of the affected side, sweaty, pale skin around the face, swelling around the eye on the affected side, and an excruciating pain, which is generally located in or around the eye, but that may spread to other areas of the face, head, neck and shoulders. The duration of these attacks ranges from 15 minutes to three or more hours. Dr. Peter Goadsby, a leading cluster headaches researcher and, Professor of Clinical Neurology at University College London said, "a cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster
headache patient if they’ve had a worse experience, they’ll universally say they haven't.”
     Until recently, there was thought to be no link between heredity and cluster headaches. However, studies have suggested that genes do in-fact play a large role in the disease. Genetic epidemiological research has shown that first-degree relatives of those who suffer from cluster headaches are much more likely to have the disorder than those in the general population. Cluster headaches have also been reported in concordant monozygotic twin pairs. Currently, the type and number of genes that are associated with the disease are unknown.
     The impact that cluster headaches have on those who are afflicted is immeasurable. Those who experience an attack may have concerns for their immediate health. However, it is believed that cluster headaches will not harm you physically. Unfortunately, the nickname associated with the disease was rightly earned.  In Dr. B.T. Horton’s 1939 paper A New Syndrome of Vascular Headache: Results of Treatment with Histamine he claims, “Our patients were disabled by the disorder and suffered from bouts of pain from two to twenty times a week. They had found no relief from the usual methods of treatment. Their pain was so severe that several of them had to be constantly watched for fear of suicide. Most of them were willing to submit to any operation which might bring relief.”
Unfortunately, there is no cure for cluster headaches, although there are many treatment options. Treatments include a number of preventive, acute, and long-term medications. In extreme cases surgical procedures are used in an attempt to damage the nerve pathways, which are thought to be responsible for the pain. The surgical procedures that are available are all highly dangerous and can only be performed once.  Those who suffer from the disease have many options. The majority of those who are afflicted treat their pain with either pain-medication or with pure oxygen.

Welcome on board.
Oxygen (high flow) and 1/3 Imigran once a blue moon.

Effect on life-span development?

For me:

To Abort a headache:
Oxygen: optimask at 25 lpm
Zyprexa
Maxalt MLT (dissolvable)
Imitrex injects

Prevents:
Verapomil
Lithium

To stop temporarily a cluster:
Prednisone

Those seem to work best for me.  Vicondin, percocet, and ultracet never worked for me and only made me off my norm and still hit.

Has anyone ran out of O₂ and in desperation tried the acetylene?
(hope you know I'm not serious)

02 to abort, rc seeds as prevent and understanding friends and family who love and support me when I am dealing with unpredictable, crazy pain.

Beth :)

very novice paper

LasVegas wrote on Mar 18^th, 2010 at 10:38pm:

very novice paper

I got an A on that paper.

Also, thanks for the one liner... Really helps with criticism.

I guess CH and being a dick-head unnecessarily must go together more often than not.

watch your personal attacks newbie. 

LasVegas wrote on Mar 18^th, 2010 at 10:38pm:

very novice paper

That's not a critique.

jp7833 wrote on Mar 20^th, 2010 at 5:43pm:

LasVegas wrote on Mar 18th, 2010 at 10:38pm: very novice paper I got an A on that paper. Also, thanks for the one liner... Really helps with criticism. I guess CH and being a dick-head unnecessarily must go together more often than not.

Nice that a person makes 1 comment and you decide to insult a majority of the posters here.  I think you might want to take this back or take a hike.

jp7833 wrote on Mar 20^th, 2010 at 5:43pm:

I guess CH and being a dick-head unnecessarily must go together more often than not.

Unfortunately this wasn't covered in the cluster survey. Maybe some statistics could be gathered in future surveys or research studies.  :D

It was funny though, I laughed pretty hard my fellow dickheads.  It was an undergrad paper, so cut JP a little slack.

Anywho, go to the clusterbusters website and see if any of that interests you.  Saved my ass for the last couple of years!

Good luck and don't let any of us looney tunes get you down.  People here really do care and we're better together than alone.  :P

--Shaggy   

Hello fellow CH sufferers...I am a newbie! I have only been experiencing these for 5 years...I had a period of 2 years without them...I was sooo greatful. My doctor wanted to put me on Lithium..but I refuse to do preventatives until I start getting CH constantly. I take Imitrex inj at the first sign so fortunately I only have 5 minutes of pain or so before the pain goes away. The only problem is the nausea I get and lethargy..it makes work interesting to say the least. I am in the middle of a cluster right now..so far 1.5 weeks every am at about 3 or 6 am. The latest? I am fighting with my ins co to pay for a refill - my doc has to call and get pre auth ..otherwise I am out $185 a pop..those inj are a life saver! I have never tried O2 though..where do you even get that? Does a neurologist prescribe that?

oh I forgot to ask....does anyone know of any long term side effects to Imitrex injections? They work sooo well for me I am just wondering why more people on this site don't seem to use them..they work almost instantly!

Check out the Imitrex Tip on the left, or get the new lower mg injections.  My neuro want precribe it for me until I get cardio testing, but I am 55 with a family history of heart disease.  Good luck!

Been on Imitrex for 10+years, it still works for me and I haven't had any long term side affects from it yet.

JennLynn,

Yes a neuro or any doc prescribes O2, and you get it from a medical supply place (they'll deliver it).

Or some people bypass the prescription and just get the same O2 at a welding supply place.

You gotta check out the imitrex tip Joni mentioned - it will enable you to get 2 to 3 times as many CH aborts for your $ and will lessen the risk of any side effects.

It is good that you are interested enough in the disease to do a college paper on the subject. I thought it was a decent paper; all except for the last line.... "The majority of those who are afflicted treat their pain with either pain-medication or with pure oxygen."

The majority treat their acute attacks with 02 and triptans and not with pain medication. In my case I found that while in cycle narcotic pain medication had very little effect.

Also, while marijuana is used to treat chronic pain it is not recommended for treatment of CH, either acute or as a preventative. Marijuana is a fairly strong vasodilator.

02 for me!

Caron

take a shower and keep your head under the water and let it run over your head.

energy drinks

cold air

exercise

o2 compliments any of these activities.

try o2 in the shower. thats a good one

Can only give you my personal experience with Imitrex. 28 years I never had a cycle go much past 12 weeks. First and only cycle I used Imitrex, cycle went over 8 months. I've seen several others post of similar experiences with Imitrex "suspected" of extending their cycles.

Clearly my one time experience does NOT qualify as even close to an official study! ;) But I will still never try it again.

Oxygen aborts just as quickly as imitrex did, with none of the lethargy or "imitrex hang over." Again, only my personal experience, certainly not offered as a "cure all" or a guarantee!

For medical oxygen you will need a prescription. Read the oxygen info link on the left as it must be used correctly or it will not work.

Welcome to the board!

Joe

Joe
The same thing happened to me! I posted it here and got my ass handed to me. I was accused of trying to make people suffer and scare them. I can't remember my old screen name so I had to sign up again.
  I feel so sorry for people who may have this problem and not realize it.

john

Fortunately, the flamers who used to make this board uncomfortable to so many, have moved on to other forums.  ;)

Having made the previous statement about NEVER doing trex again...(what did mommy say about never say never???) was getting creamed at a party tuesday night and had to do a trex jab. Oh well, it was a noble try!

Joe

jp7833 wrote on Mar 10^th, 2010 at 11:53pm:

Anyways, what do most of you find helps most with your Cluster Headaches? Thanks in advance.

mushrooms