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An Interview for Cluster Headache Sufferers (Read 3278 times)

Cameron

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An Interview for Cluster Headache Sufferers
Jan 1^st, 2009 at 12:31pm

Hey,

I posted here a few months back introducing myself. Sorry I never followed up on that thread. To answer the questions posed:

I do not have any family or friends who suffer from cluster headaches. I learned about them from doing online research on migraines.
I chose to do this project because I've never met anyone who knew about cluster headaches before I told them, and also because I am fascinated by the involvement of the hypothalamus and the (related) punctual, circadian nature of the affliction.
I promise I am not any sort of troll, and I say this fully knowing that this will provide little reassurance as a troll would say the same thing. I'm sorry I cannot do more to help this.

My name is Cameron. I live in Maryland, USA. I am a senior in high school. I am asking these questions for my Anatomy and Physiology class. I have to “teach the class” about an affliction for forty-five minutes. I will present every answer you give me to my class. (I promise this up until, let's say, the fourth page. I may then have to stop accepting answers due to time constraints, but this is rather unlikely.)

So without further ado, here are my questions. I appreciate your help and, while I cannot provide any other compensation, you will have helped others learn about cluster headaches.

Of course, you can answer as few or as many of these as you'd like. You may also respond to questions of your own creation. All and any help is appreciated. Thank you, and good luck to you all. I promise that I will, unlike my last thread, check back several times daily to respond to any of your questions. After all, that would only be fair. Wink

Interview for Cluster Headache Sufferers

Do you suffer from episodic or chronic cluster headaches?

Does the condition appear to be genetically triggered?

How were you diagnosed? Was it difficult to find a doctor with experience treating cluster headaches?

How do you treat the condition? What medicine/drugs/alternatives do you currently use? Which has had the most success in helping you?

What is your opinion on the use of illegal drugs to treat cluster headaches? I am not referring to the use of narcotics for pain management, but rather certain drugs (hallucinogens, or others) that have been reported to create long, headache-absent periods.

How does the condition impact your work, life, and family? How do you manage the constant threat of having an attack?

Is there anything else you would like the general public to know about cluster headaches?

« Last Edit: Jan 1^st, 2009 at 12:33pm by Cameron »

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: An Interview for Cluster Headache Sufferers Reply #1 - Jan 1^st, 2009 at 12:41pm You posted this same crap months ago and never came back till now. Why would I reply? Kinder gentler Potter
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Jimi CH.com Moderator CH.com Alumnus Offline Don't feed the moderators Posts: 4925 Madisonville, KY Gender:	Re: An Interview for Cluster Headache Sufferers Reply #2 - Jan 1^st, 2009 at 1:34pm This may help you, if you need some stats on some of the questions that you pose. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or *Link appears to be broken. Anyway, look over to the left and click on cluster survey.
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nani

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Re: An Interview for Cluster Headache Sufferers
Reply #3 - Jan 1^st, 2009 at 1:49pm

Hi Cameron, I remember you. I tell anyone and everyone who will listen all about my CH. I've even done interviews in the newspaper and in a documentary so I could spread the word. I'll happily share with you.

I ask though, that you handle this info in a mature and studious way. Since you are a high school student, and I am an alternative user, I do not want you to get the wrong impression about my choices. I am a grandmother of 6, and choose these methods only for their efficacy in regard to my chronic condition.

All the best to you, nani

Interview for Cluster Headache Sufferers

Do you suffer from episodic or chronic cluster headaches?
I was episodic from 1973 - 2000. I became chronic in 2001.

Does the condition appear to be genetically triggered?
I believe that the jury is still out on that. There have been studies in the UK, but I forget what the conclusions were. I do know that my mother, sister and daughter suffer from migraines and that my sister also suffers from episodic CH

How were you diagnosed? Was it difficult to find a doctor with experience treating cluster headaches?
I was misdiagnosed for 27 years, LOL. It was a visit to urgent care for another "sinus infection" where a young dr suggested that it was CH. It took a few tries to find a neuro with CH experience.

How do you treat the condition? What medicine/drugs/alternatives do you currently use? Which has had the most success in helping you?
Since my diagnosis, I've tried almost all of the standard CH preventative meds. None really helped much, or for long. I did have success with kudzu (supplements) for a while, but that failed me eventually as well. The most efficacious prevents I have found are the clusterbuster treatments. While I am still technically chronic, my CH is very well controlled and I've just reached a point where I can go 6 months between treatments. As far as abortives go, I have heart issues so I am limited to oxygen, which works far better since I started busting.

What is your opinion on the use of illegal drugs to treat cluster headaches? I am not referring to the use of narcotics for pain management, but rather certain drugs (hallucinogens, or others) that have been reported to create long, headache-absent periods.
There is a huge difference in my quality of life since I started using alternatives, so it is a chance I am willing to take. The work done at Clusterbusters will hopefully result in getting a legal med, without hallucingenic effects, that will be available to all sufferers.

How does the condition impact your work, life, and family? How do you manage the constant threat of having an attack?
As I said, the busting works quite well, so I no longer live in fear. I've been able to return to work fulltime and have a life again. When I do experience "high cycles" or increases in activity, I keep oxygen and energy drinks around.

Is there anything else you would like the general public to know about cluster headaches?
Not at this time.

« Last Edit: Jan 1^st, 2009 at 1:49pm by nani »

Here I sit between my brother the mountain and my sister the sea. We three are one in loneliness, and the love that binds us together is deep and strong and strange.~Kahlil Gibran

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gizmo

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Re: An Interview for Cluster Headache Sufferers
Reply #4 - Jan 1^st, 2009 at 3:11pm

Hi Cameron,

Interview for Cluster Headache Sufferers

Do you suffer from episodic or chronic cluster headaches?
Epsiodic from 1976 - 2001, chronic since 2002

Does the condition appear to be genetically triggered?
I'm not sure but I suspect that at least part of it is genetical.

How were you diagnosed? Was it difficult to find a doctor with experience treating cluster headaches?
Diagnosed myself in 2005 and finally found a doc that approved my self diagnosis after the usual tests.

How do you treat the condition? What medicine/drugs/alternatives do you currently use? Which has had the most success in helping you?
So far the preventatives failed or even seem to make the condition worse. Therefore I'm thinking about going the no-preventative meds route (again).
I use O2, Imitrex and energy drinks / strong coffee to abort a hit.
So far I had the best success with O2 and Imitrex.

What is your opinion on the use of illegal drugs to treat cluster headaches? I am not referring to the use of narcotics for pain management, but rather certain drugs (hallucinogens, or others) that have been reported to create long, headache-absent periods.
Not an option for me right now, but I don't condemn anybody who uses them.
As soon as they aren't illegal anymore I'll try them.

How does the condition impact your work, life, and family? How do you manage the constant threat of having an attack?
After a long time with the beast you learn to deal with it and live your life between the hits.
To me being chronic is easier since you never forget and you are always prepared.
So little or no impact at all.

Is there anything else you would like the general public to know about cluster headaches?
Stop telling me to take a pill and act like a man and stop telling me you had one of those once.

Oliver

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George

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Re: An Interview for Cluster Headache Sufferers
Reply #5 - Jan 1^st, 2009 at 8:40pm

Hello, Cameron.

Yes, I remember you. I don't mind answering your questions. I did much the same thing for a class presentation my daughter gave.

Cameron wrote on Jan 1^st, 2009 at 12:31pm:

Interview for Cluster Headache Sufferers

Do you suffer from episodic or chronic cluster headaches?

Episodic.

Does the condition appear to be genetically triggered?

No. No one else in my immediate or extended family gets them. To my knowledge, there is no history of CH in my background.

How were you diagnosed? Was it difficult to find a doctor with experience treating cluster headaches?

I was fortunate. I was first diagnosed by a very perceptive family physician about three years after my first CH attack. This was at a time when CH was not as well-known as it seems to be now. At the time, it didn't much matter whether a physician had experience with them--treatment options were very limited. It's only in the past few decades that truly effective means to control CH have become available.

How do you treat the condition? What medicine/drugs/alternatives do you currently use? Which has had the most success in helping you?

I've opted for a very conservative approach to treatment. Essentially, I do not take medications. If I had been chronic, or if my cycles had been more severe, I may well have done things differently. I do use melatonin while in cycle, and I take vitamin B2, magnesium, and calcium supplements. I intend to use oxygen as an abortive during my next cycle.

What is your opinion on the use of illegal drugs to treat cluster headaches? I am not referring to the use of narcotics for pain management, but rather certain drugs (hallucinogens, or others) that have been reported to create long, headache-absent periods.

I am neutral on the use of hallucinogens to treat CH. I'm aware that many have reported positive results from the use of hallucinogens. That being said, it's not an approach I have used or intend to use, for a variety of reasons. I will be watching for the results of definitive, controlled studies with interest. I understand these are in the planning stages.

How does the condition impact your work, life, and family? How do you manage the constant threat of having an attack?

Naturally it has an impact, but I've lived with CH for a long time. When my cycles were twice-yearly bouts, 6-8 weeks in length, it obviously had a greater impact than it does now--when my cycles come every three years. CH sometimes subsides later in life. It appears that is happening to me. As an episodic, it's a matter of getting through the thing as best I can, putting it behind me, and getting on with it. As for a constant threat...it's really not like that. Once you get to know how your cycles manifest, it's possible to know (to some extent) when you're most vulnerable to an attack and how to be prepared for it.

Is there anything else you would like the general public to know about cluster headaches?

We look like heck when we're getting one, but it's not dangerous, we don't need an ambulance or a doctor, and it will pass.

"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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Re: An Interview for Cluster Headache Sufferers
Reply #6 - Jan 1^st, 2009 at 10:16pm

Cameron wrote on Jan 1^st, 2009 at 12:31pm:

Hey,

Interview for Cluster Headache Sufferers

Do you suffer from episodic or chronic cluster headaches?
episodic

Does the condition appear to be genetically triggered?
no

How were you diagnosed? Was it difficult to find a doctor with experience treating cluster headaches?
my family doctor suggested ch. never diagnosed

How do you treat the condition? What medicine/drugs/alternatives do you currently use? Which has had the most success in helping you?
psyilocibin worked for me. i've never tested positive for any kind of drug test. o2 is a great abortive.

What is your opinion on the use of illegal drugs to treat cluster headaches? I am not referring to the use of narcotics for pain management, but rather certain drugs (hallucinogens, or others) that have been reported to create long, headache-absent periods.
they work

How does the condition impact your work, life, and family? How do you manage the constant threat of having an attack?
well i go 3 or 4 years between cycles. driving a truck is scary during an attack but the o2 helps. any occupation is tough with ch.

Is there anything else you would like the general public to know about cluster headaches? yes they suck!

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

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GrandPotentate

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Re: An Interview for Cluster Headache Sufferers
Reply #7 - Jan 1^st, 2009 at 11:17pm

Do you suffer from episodic or chronic cluster headaches?
Episodic

Does the condition appear to be genetically triggered?
Nope

How were you diagnosed? Was it difficult to find a doctor with experience treating cluster headaches?
I was misdiagnosed for a couple years and given migraine meds. They were ineffective.

How do you treat the condition? What medicine/drugs/alternatives do you currently use? Which has had the most success in helping you?
Oxygen has been very goo to me. Read up on the links from this site.

What is your opinion on the use of illegal drugs to treat cluster headaches? I am not referring to the use of narcotics for pain management, but rather certain drugs (hallucinogens, or others) that have been reported to create long, headache-absent periods.
Experimented with that crap long before I got CH, and set it aside a long time ago. Man, that sounds like a scary combination for me.

How does the condition impact your work, life, and family? How do you manage the constant threat of having an attack?
Most attacks are evening and night, so it ruins my social life while I am in cycle.

Is there anything else you would like the general public to know about cluster headaches?
These suckers hurt worse that anything I had previously imagined, and seem to strike out of the blue. Yuk! But, for many of us, we can work out our lives around them, and we really enjoy the pain-free times.

Jon

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Pixie-elf

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busting is the best!

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Re: An Interview for Cluster Headache Sufferers
Reply #8 - Jan 2^nd, 2009 at 12:07am

Hi, Cameron. I'd be happy to help you out.

Interview for Cluster Headache Sufferers

Do you suffer from episodic or chronic cluster headaches? Episodic for now. My cycle started May 28th of this year and has not stopped. So we don't know if I'm chronic or not yet. It takes 1 year to determine...

Does the condition appear to be genetically triggered? No

How were you diagnosed? Was it difficult to find a doctor with experience treating cluster headaches?
I had repeative sinus problems, I'd just recovered from a severe sinus infection that was treated with pretty strong antibiotics...However, my left side of my face was still hurting. The ENT I saw the day before my cycle began, suggested CH. I just figured it was my allergies. The next day I had my first cluster of this cycle. Pretty much all of my doctors so far know about the condition, and if they don't, I'm already used to educating doctors on how to deal with some of my other rare illnesses.... So it's no big deal if they don't know how to treat me.

How do you treat the condition? What medicine/drugs/alternatives do you currently use? Which has had the most success in helping you?
02 is the best abortive possible. We're currently playing with diferent medications and I'm about to be schedualled for a nerve block. I take Elavil, Balcofen (It's a muscle relaxer that hits on GABA receptors.) Kudzu, Skullcap, Melatonin, and Magnesium, too. I cannot use any triptans, as I have 2 conditions which would either cause me to have a stroke due to them...or just kill me immidiately.

What is your opinion on the use of illegal drugs to treat cluster headaches? I am not referring to the use of narcotics for pain management, but rather certain drugs (hallucinogens, or others) that have been reported to create long, headache-absent periods.
I'm happy for those who have been able to use these methods and obtain relief! I envy them, I've got too many health issues to use the things mentioned.... But you do what you have to, to get rid of the beast.

How does the condition impact your work, life, and family? How do you manage the constant threat of having an attack?
My family is a wreck. They're all pretty emotionally devastated. It's hard on all of them... It's horrible knowing that they're hurting due to the fact I am.

Is there anything else you would like the general public to know about cluster headaches?
Not that I can think of.

Good luck with your project!

Mystina

« Last Edit: Jan 2^nd, 2009 at 12:07am by Pixie-elf »

As far as I'm concerned, cluster busting has been the best treatment I've tried. No migraines since I started it, and my hits have gotten so much better. Wanna know more?
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

It's saved my life.

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Re: An Interview for Cluster Headache Sufferers
Reply #9 - Jan 2^nd, 2009 at 4:06am

I'm all for putting word out however we can, thanks for your interest!

Do you suffer from episodic or chronic cluster headaches?

Episodic

Does the condition appear to be genetically triggered?

No I'm one of 14 siblings, an extended family, counting my kids, nieces and nephews of well over a hundred of us....and I'm it!

How were you diagnosed? Was it difficult to find a doctor with experience treating cluster headaches?

My first diagnosis was bad eyes so I got glasses. In my early 20's i got married and my wife made me go to a doctor. I was exceptionally lucky. When i finally sought help, my doctor's Brother in law had suffered from them and he knew exactly what my problem was.

How do you treat the condition? What medicine/drugs/alternatives do you currently use? Which has had the most success in helping you?

When a cycle starts, I go on a 10-14 day prednisone taper, while i start my prevent, which is lithium. Takes about 10 days for lithium to build up in my system, thus the prednisone taper. The lithium will block up to 80% of my hits, I use oxygen and oral cafergot for my attacks, and the occasional Imitrex injection when I'm really getting creamed. The oxygen has proved miraculous for me.

What is your opinion on the use of illegal drugs to treat cluster headaches? I am not referring to the use of narcotics for pain management, but rather certain drugs (hallucinogens, or others) that have been reported to create long, headache-absent periods.

I am a peace officer so I can't use them. There is no question they work, I'm looking forward to the day modern medicine will lose it's phobia about using them for conditions like ours.

How does the condition impact your work, life, and family? How do you manage the constant threat of having an attack?

After 30 years I don't let it effect my life. Other then I always have oxygen close at hand, on or off cycle. I always have Imitrex Injectables in my vehicle. We have a saying on the board, live your life between the hits. If you sit around day and night trembling at the thought of an attack, the beast has already won.

Is there anything else you would like the general public to know about cluster headaches?

It's not a hopeless condition. there is so much help available now.

Joe

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ClusterChuck

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Re: An Interview for Cluster Headache Sufferers
Reply #10 - Jan 2^nd, 2009 at 5:42am

Hello, Cameron!

I am always happy to help a student with their studies. And if that also helps to get the word out about Clusters, all the better.

Do you suffer from episodic or chronic cluster headaches?
I was episodic from 1979 to 1999 Chronic since 1999

Does the condition appear to be genetically triggered?
Not in my family. My mother suffered from migraines, but other than that, no genetic link.

How were you diagnosed? Was it difficult to find a doctor with experience treating cluster headaches?
I was misdiagnosed and treated (as psychosomatic) for the first 6 years. My sister, who is an RN read an article in one of her nursing magazines about them. I went to a new neurologist, and he confirmed the diagnosis.

It has been difficult to find experienced doctors to treat me. Right now, I have a neuro, while not very experienced with clusters, is very open to listen to what I have learned, and want to try.

As long as we can get a doctor that is willing to work WITH us, we have a good doctor. We have found that most of us know more than the doctors do about the treatment of this condition.

How do you treat the condition? What medicine/drugs/alternatives do you currently use? Which has had the most success in helping you?
After many years of taking preventative medications, that eventually stopped working, I decided to quit taking meds that had no effect.

Now I just use oxygen as an abortive, when I get a hit. When the oxygen does not work, and it is a very bad hit, I take a shot of Imitrex. I am not suppose to, due to my heart condition, but when I am in that state, I don't care about the consequences.

I don't know where I would be, right now, if I did not have the wonderful abortive qualities of pure oxygen.

What is your opinion on the use of illegal drugs to treat cluster headaches? I am not referring to the use of narcotics for pain management, but rather certain drugs (hallucinogens, or others) that have been reported to create long, headache-absent periods.
I have nothing against those that choose to use these methods. I am VERY happy that they get relief. But, due to personal conditions and promises, I do not go that route. I am VERY happy that it works for so many.

I am always happy when I hear that a sufferer has found a means to become pain free. ALWAYS good news to hear!

How does the condition impact your work, life, and family? How do you manage the constant threat of having an attack?
I am VERY lucky in that I have worked for people that worked with me, and allowed me to continue to work, even during my heavy cycles. I miss a lot of work, but they keep the job available.

My family, including parents, siblings, in-laws, wife, and children have always been extremely supportive, even if they don't fully understand just how devastating the condition can be.

Is there anything else you would like the general public to know about cluster headaches?
I would like them to understand just how devastating these are. And if they are to witness us having a hit (or attack) PLEASE just leave us alone, and do NOT panic. As bad as it may look, it will not kill us, nor cause permanent damage.

Also understand that just because it has the word "headache" in its name, it is NOT like any headache you have ever experienced!

I hope these answers help. I would be more than willing to answer any other questions that you may have, or if you want further explanations of the answers I have given.

Chuck

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Keep fire extinguisher available, and charged.

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Cameron

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Re: An Interview for Cluster Headache Sufferers
Reply #11 - Jan 2^nd, 2009 at 3:06pm

Quote:

You posted this same crap months ago and never came back till now. Why would I reply?

To spread awareness. But otherwise, you are right, I have no right to ask you specifically. I wish you the best.

Jimi: Thank you for your help. I will use that information in my presentation.

Nani: I do not judge you poorly due to your choices. The only difference between your medication and others is it's efficacy and its legality, and the fact that those two contradict each other should only make people disagree with the morality of its illegality. Therefore, I judge you positively for your open-mindedness.

On a moral basis, i am for the legalization of all drugs, even for recreational purposes. Simply because I don't believe you should be able to tell anyone else what they can and cannot put into their bodies.

I can almost understand people who disagree with my view on that. But for you, as a medical user, I cannot understand anyone who could view your decision negatively.

In fact, I'd like to mention that I don't think anyone here should let the legality of something keep them from living a healthy life. But I'm sure you've all considered this, so I won't go further on this tangent.

gizmo: Thank you.

george: I find your note about "we look like heck but it's not dangerous" interesting. Sometimes when people are very upset or hurt they lash out and break things, or attempt to hurt themselves. Is it fair to say that this never occurs with CH? Is the pain too great for the sufferer to "lash out" as a way to "cope" with it?

GrandPotentate: Thank you.

Pixie-elf: Thank you.

Guiseppi: WOW Your parents sound like impressive people. That house would be a zoo! Cheesy

And thank you.

ClusterChuck: Thank you.

Anyone else: please feel free to answer the survey or your own questions. I can use all the anecdotes I can get.

I wish you all the best.

« Last Edit: Jan 2^nd, 2009 at 3:10pm by Cameron »

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gizmo

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Re: An Interview for Cluster Headache Sufferers
Reply #12 - Jan 2^nd, 2009 at 4:46pm

Cameron wrote on Jan 2^nd, 2009 at 3:06pm:

Sometimes when people are very upset or hurt they lash out and break things, or attempt to hurt themselves. Is it fair to say that this never occurs with CH? Is the pain too great for the sufferer to "lash out" as a way to "cope" with it?

It is, unfortunately, not fair to say so.
We don't lash out or try to break things but we do sometimes hurt ourselves.

Oliver

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UnderTheRadar

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Re: An Interview for Cluster Headache Sufferers
Reply #13 - Jan 2^nd, 2009 at 7:48pm

There's an episode of "House" that shows a teenager having a cluster attack- he jumps up and beats the $#@% out of another kid....I'm glad they are putting our disease on TV, but I'm terribly sad that they had the character act like that...it does NOT send you into a fit of rage- just a fit of pain!!

What does seem to be unusual about CH, though, is that unlike other pain disorders like migraines, CHers tend to pace and fidget and rock in their seat or even bang their heads on walls. If you look into that, there is a medical basis for it- I can't remember where I read it, but a few journals have talked about how the pain is so severe that you can be driven to "block out" the pain by banging your head on something.

That's something we can't seem to get across to the rest of the public- how extreme this pain is. I have been through natural childbirth- no painkillers at all- and this really is worse than that.

Another very important aspect of this that you might want to address is the fact that this is long-term pain. It's one thing to, say, have a baseball hit you in the eye; imagine having it hit you several times a day, day after day, for weeks and months at a time, never knowing when it's going to stop, just waiting for the next hit...it's a form of torture that wears us down emotionally and psychologically as well as physically. It has a "cumulative effect" on us. You might want to talk to a school counselor or look up some books on chronic pain and get some facts on that.

Good luck, and thank you for helping to spread awareness of this disorder!

Remember- double-line the foil, shiny side out.

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Re: An Interview for Cluster Headache Sufferers
Reply #14 - Jan 3^rd, 2009 at 12:18am

Cameron wrote on Jan 2^nd, 2009 at 3:06pm:

george: I find your note about "we look like heck but it's not dangerous" interesting. Sometimes when people are very upset or hurt they lash out and break things, or attempt to hurt themselves. Is it fair to say that this never occurs with CH? Is the pain too great for the sufferer to "lash out" as a way to "cope" with it?

Specifically, I was referring to the fact that an attack is not, in itself, dangerous to the person having it. The person may, however, be in danger of hurting him or herself (sometimes in lurid and indelicate ways--sorry Chuck--LOL ).

It's certainly not dangerous to be around someone who's having an attack. Aggression isn't part of it.

Best,

George

« Last Edit: Jan 3^rd, 2009 at 12:18am by George »

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Re: An Interview for Cluster Headache Sufferers
Reply #15 - Jan 3^rd, 2009 at 12:53am

Do you suffer from episodic or chronic cluster headaches?
Episodic. 1 to 2 cycles per year. Was in remission for six years until this year.

Does the condition appear to be genetically triggered?
My Grandfather had severe headaches that could of been clusters. Never diagnosed.

How were you diagnosed? Was it difficult to find a doctor with experience treating cluster headaches?
Went ten years before proper diagnosis. Ironically, I was misdiagnosed by a Neuro when my cluster started and ten years later the same neuro finally got it right.

How do you treat the condition? What medicine/drugs/alternatives do you currently use? Which has had the most success in helping you?
When in cycle I use Prednizone and Verapamil as a prevent. I also use oxygen as an abortive.

What is your opinion on the use of illegal drugs to treat cluster headaches? I am not referring to the use of narcotics for pain management, but rather certain drugs (hallucinogens, or others) that have been reported to create long, headache-absent periods.
Anything that will make the pain go away is fine with me.

How does the condition impact your work, life, and family? How do you manage the constant threat of having an attack?
My cycle lasts for 1 to 2 months. During that period I am pretty much a zombie mostly due to lack of sleep. I stumble through the work day the best I can, obviously not 100%. My family is very aware of what is going on and pretty much leaves me be. Not a fun time for all of us.

Is there anything else you would like the general public to know about cluster headaches?
It would be alot easier if everyone knew what we go through and be aware that when we are having an episode that we need our space.

Hope this helps
JPC

« Last Edit: Jan 3^rd, 2009 at 12:55am by Just Plain Carl »

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CH.com Alumnus

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St Peter Port, Guernsey.
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Re: An Interview for Cluster Headache Sufferers
Reply #16 - Jan 3^rd, 2009 at 3:22pm

Hi Cameron,

Only saw this, so hope I'm not too late. Here are my answers.

Do you suffer from episodic or chronic cluster headaches?

Chronic

Does the condition appear to be genetically triggered?

No. There is no one in my family (that I'm aware of) that has this other than me.

How were you diagnosed? Was it difficult to find a doctor with experience treating cluster headaches?

I am one of the lucky ones. I was diagnosed first with sinusitis by one neurologiust but after suffering for 6 months, I sought help from a private neurologist who diagnosed me with CH. I was also very lucky that my family doctor was open to learning about CH and not only helped me, but used me for his own purposes to learn more about CH and how to treat it.

How do you treat the condition? What medicine/drugs/alternatives do you currently use? Which has had the most success in helping you?

I take 6mg of melatonin every night as a preventative. I use o2, energy drinks, ice packs and coffee as an abortive. I have tried a number of medications (prednisone, indomethacin amongst others) that I have not had much luck with.

What is your opinion on the use of illegal drugs to treat cluster headaches? I am not referring to the use of narcotics for pain management, but rather certain drugs (hallucinogens, or others) that have been reported to create long, headache-absent periods.

If it works, then it works. Each CH sufferer is different and it's a shame that what works for some of us isn't legal to use as medication.

How does the condition impact your work, life, and family? How do you manage the constant threat of having an attack?

By being prepared. My fiance knows what to do if I have an attack in public or at home and if I'm getting them one after the other, then we change our plans until things ease up a bit.

Other aspects that are affected are small ones - having no alcohol, so being in a bar while watching my friends have shots and get drunk and be silly while I have an orange juice (but my liver is thankful!). Also, when I have a cold or feel unwell, it's pretty crap because paracetamol and aspirin are triggers for me and these are found in most cold/flu medications, so I just have to wait it out and/or use natural remedies instead.

Is there anything else you would like the general public to know about cluster headaches?

That this isn't a 'headache' but a medical condition. I rarely tell people I have CH, because I hear stories of migraines and tension headaches. I don't think I suffer any more or less than these people, but the term CH is misleading. I'd like people to know that there are as many sufferers of this as there are of MS, yet it is so often misdiagnosed because it is unheard of.

Also I'd like the medical community to be able to recognise CH quicker so that sufferers can get help and the right combination of meds to help them lead normal lives.

Thanks Cameron. Hope this helps.

xx

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BarbaraD

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Douglasville, TX
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Re: An Interview for Cluster Headache Sufferers
Reply #17 - Jan 4^th, 2009 at 7:38am

Do you suffer from episodic or chronic cluster headaches?

Chronic

Does the condition appear to be genetically triggered?

NO - although my grandmother, dad and son suffer/suffered from migraines

How were you diagnosed? Was it difficult to find a doctor with experience treating cluster headaches?

I was lucky. I went to a teaching hospital and was diagnosed pretty quick after I started having them (thought I had a brain tumor).

How do you treat the condition? What medicine/drugs/alternatives do you currently use? Which has had the most success in helping you?

O2 O2 O2!!! I'm on a preventative, but with the high flow O2, I've been able to cut the preventive down to a very low dose and am doing great with this right now. The high flow of O2 is working really well and I'm almost completely off any other abortatives.

What is your opinion on the use of illegal drugs to treat cluster headaches? I am not referring to the use of narcotics for pain management, but rather certain drugs (hallucinogens, or others) that have been reported to create long, headache-absent periods.

The results have been amazing, so I'm for them if they help one sufferer stop the pain of CH. Research is being done and so far so good with it. What people need to understand is -- this is NOT to get high - it is to PREVENT PAIN! And those of us who have endured this pain would eat worms if that would help, so anything that works - I'm for!

How does the condition impact your work, life, and family? How do you manage the constant threat of having an attack?

You just learn to live with it and enjoy the PF times. You can't live your life in constant "fear". You "handle" the headaches when they happen and don't think about them when they're not there (or try not to think about them).

Is there anything else you would like the general public to know about cluster headaches?

I'd like to see more information get out to the public on CH and ER's and doctors become more aware of it. People are suffering needlessly and being diagnosed wrong because of ignornace of medical professionals. Only education will cure this. There is really no way to describe the pain of CH to anyone who has not experienced it. The term "Suicide Headache" was coined for these headaches for a reason. This website has probably saved more lives than any of us would care to count. Unless you've been there - you just can't understand.

What don't kill ya, Makes ya stronger!

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sevim

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Re: An Interview for Cluster Headache Sufferers
Reply #18 - Jan 4^th, 2009 at 9:34am

Do you suffer from episodic or chronic cluster headaches?

my husband suffers as a chronic last 4 years

Does the condition appear to be genetically triggered?

don't know his grandmother had bad migraine attacks i don't know if there is a connection all i know my doctor told me that most of genetic conditions skip one generation based on him it might be genetic

How were you diagnosed? Was it difficult to find a doctor with experience treating cluster headaches?

Diagnoesed by ENT 4 years ago and neurologist confirm that

How do you treat the condition? What medicine/drugs/alternatives do you currently use? Which has had the most success in helping you?

Mostly natural medications some natural stuff for his stomach seems helping bit. i am against the pharmaceutical drugs, side effects scares me. i spend too much money but its worth to try different things, he use only zomig during the attack and of course o2. O2 definitely helped a lot.

What is your opinion on the use of illegal drugs to treat cluster headaches? I am not referring to the use of narcotics for pain management, but rather certain drugs (hallucinogens, or others) that have been reported to create long, headache-absent periods.

hallucinogens or other natural medications has been used thousands years before pharmaceutical companies turn around and saw the great profit out off sick people who desperate for getting their life back. My husband soon going to try rc seeds if its works this time i will do anything to get them in my hand. With this illness, if i know world most dangers illegal drug works i will do anything to get them

How does the condition impact your work, life, and family? How do you manage the constant threat of having an attack?

Well my husband can't work, i work in too job try to pay for expense of life. there is time when we feel like we have been beaten by life there is time we think that there is still hope it change based on ch attacks Cheesy

Is there anything else you would like the general public to know about cluster headaches?

I quit on that subject 2 years ago its got word headache people don't get it and i am not gone waste my energy anymore to try to explain i don't blame them when doctors got little knowledge about this illness how others can understand
good luck

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Cameron CH.com Newbie Offline I Love CH.com! Posts: 4	Re: An Interview for Cluster Headache Sufferers Reply #19 - Jan 4^th, 2009 at 5:02pm Thanks to everyone who has helped. I am giving the presentation tomorrow and I am no longer in need of answers. Take care. I wish you all the best.
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Chad

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Emmaus, PA
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Re: An Interview for Cluster Headache Sufferers
Reply #20 - Jan 5^th, 2009 at 10:22am

Hey Cameron,

Here ya go!

Do you suffer from episodic or chronic cluster headaches?
Episodic

Does the condition appear to be genetically triggered?
No

How were you diagnosed? Was it difficult to find a doctor with experience treating cluster headaches?My GP suggested CH around 5 or so years ago. Went to the neuro after that to have it confirmed.

How do you treat the condition? What medicine/drugs/alternatives do you currently use? Which has had the most success in helping you?Energy drinks, exercise, Imitrex (if hallucigens don't work), RC Seeds, shrooms, positive meditation.

What is your opinion on the use of illegal drugs to treat cluster headaches? I am not referring to the use of narcotics for pain management, but rather certain drugs (hallucinogens, or others) that have been reported to create long, headache-absent periods.I'm all for and use it!

How does the condition impact your work, life, and family? How do you manage the constant threat of having an attack?
I handle pain well, but if I get one at work, I walk to the car and fight it out if Trex doesn't work. This is my first time using seeds, so I have yet to get into the next cycle to see their effectiveness. Used shrooms years ago and it literally aborted the cycle (so I think) in it's tracks. I was in the beginning of the cycle so that was my proof. Didn't have any CH to deal with at work that year.

I manage my constant threat knowing that this beast won't kill me. I'm blessed to have a site like this to express my feelings. I never think about the next CH either. You'll drive yourself nuts.

Is there anything else you would like the general public to know about cluster headaches? They're a bitch, but we all get through it.
Really, the public just doesn't know unless they get one. The severity of pain is too hard to explain. It's not a migraine or tension headache, it's hell! All we can do it learn, get a good neuro, and keep on chattin with the wonderful folks on this site.

« Last Edit: Jan 5^th, 2009 at 10:27am by Chad »

When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!

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