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Arcan
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Hi all!

Let me start off by introducing myself: I'm 20 and have been diagnosed with HC 2 days ago (woop dee doo), though I'm currently in the 2nd half (I hope) of my 3rd cycle. They usually last about a month, once a year. I just got some verapamil and an oxygen tank, which seems to be working, as it managed to fend off all attacks since yesterday, though I have shadows all the time.

Anyway, what I'd really like to know is how this is going to evolve. Could it go away on it's own or is it more likely that it'll keep comming back for the next 40 years? What are the odds of it getting worse, such as longer/more cycles, or, worst case scenario, chronic HC?

Two off-topic questions, if I may:

Why the non-rebreathing mask? I have the nosetubes, should I ask for the mask?

I was prescribed Imitrex though I haven't bought it yet, but could its use increase the intensity of the attacks? That's what I seemed to understand from what Bob Wold said in the Horizons 2009 movie.

Thanks, and good luck!

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Welcome, Arcan.  I'm going to let people with more experience answer many of your questions.  Surely you have to prepare for the fact that until a fully-effective preventive is available, you're likely to have more CH periods in the future.  In one way, if this can possibly be said about CH, you're "lucky," because new treatments are being identified and developed all the time.  Even the use of oxygen is a relatively recent development.  You have every reason to expect that CH will be "defeated" in the foreseeable future.  I don't think you have to worry about suffering from CH for the next 40 years, as you ask. 

If I may say so, you're "lucky" in three other ways, too.  One is that you got a relatively quick diagnosis; many people are misdiagnosed for years and years.  The second is that you found this site, where you will meet great people who will do their best to help you. The third is that your doctor prescribed oxygen, which is the most effective, side-effect-free abortive you can get.  Many people have to fight for their O2; many never even learn about it.

It's wonderful that your oxygen is working using just the cannula (the nosetubes).  For most people, they don't help.  You need a mask because you want to breathe in pure oxygen, not oxygen mixed with the air around you.  You say that you have a tank: that's also good, because often people who get cannula get a "concentrator" -- a machine that creates purer oxygen from the air in the room, but which isn't really very useful for the long-term treatment of CH.  I'm hoping you have a regulator on your tank that goes up to 15 liters per minute (lpm), though it sounds possible that you could get relief at lower flow rates.

I would suggest that you read through my post here about oxygen: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

And that you at least look over the references (including one to a different file on oxygen) that are listed here, because it will give you a better idea of what people here are most often discussing:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051886

Since it seems you have high blood pressure, it could be that the licorice-root treatment that's been discussed here lately would not be advisable for you, but you could look at that information and also at a long but interesting thread about vitamin D3 at the clusterheadaches.com board.  Here are links to those: 

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0

The main thing is to keep learning and keep asking questions.  Best wishes to you for PF (pain-free) times ahead.

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Thanks for the info! I'll start reading up on that.

It's not really that I have high blood pressure, I just forgot the name of what the doctor prescribed (Isoptine/verapamil, now edited) and all I remember from the explanation was "lower blood pressure". Sorry for the confusion, I was having some severe shadows when the doc was telling me about the meds :P

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You're a lucky man, Arcan. In a relatively short period of time, you've been properly diagnosed, have begun putting together a proper oxygen set-up, gotten the basics from "The Man" (Bob Wold) in his video and have found this website where you've been given instructions by one of the site's heroes (CHfather). After reading the posts suggested to you by CHf, you'll be in a position to decide where to go from here and what questions to ask regarding your treatment. Welcome and good luck.

Ron

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Arcan, there are real heroes here, and, while Ron's kind words are deeply appreciated, I'm not one of them.

It occurs to me that there are some basic things that experienced people with CH know that you might not be aware of.  For example, many people find that slamming down a RedBull, or some other energy drink with taurine in it, at the onset of an attack helps a lot.  They often do that just before jumping onto the oxygen.  My daughter got by somehow for many years by eating coffee beans at the beginning of an attack.  Ginger tea helps some folks with the shadows, or even by reducing the severity of attacks (a teaspoon of powdered ginger in hot water works).  Melatonin (6-12 mg. taken before bed) has helped some people.  As you look around the site, you'll see many other strategies (capsaicin in various forms, for example).  It's generally true that you have to experiment to find what will work for you.

Also, I assume you've noticed some "triggers" -- for most people, alcohol is a trigger, but many other things can also trigger attacks.

Just some basic thoughts.

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Welcome, Arcan! 

So sorry to hear you were diagnosed with CH's - but glad to hear you were able to get some 02 and found this site.

CH's can be very frustrating because there are no clear cut answers to predict if/when they may get worse or if they will turn chronic.  My CH's began as episodic when I was around 20, then about 8 years ago they turned chronic (I'm 39 now).  But, this certainly doesn't happen to everyone. 

I'm very happy to hear you are getting some relief.  I had used Verapamil and Imitrex injections for 11 years.  Verapamil worked great at first, but I had to keep upping the dose because the CH's would break through.  Eventually, I got to the point where I couldn't increase the dosage, I was very sick from the side effects, and was still getting sometimes 12 or more hard attacks per day.  Imitrex worked, but it did cause re-bound CH's plus lot of nasty side effects.

02 is the best abortive for me.  A non re-breather mask and a high flow regulator is essential.  CH Father has done a fantastic job putting together the details in the link he posted above. 

Have you considered trying alternative treatments such as RC seeds?  Some have found that these will reduce or eliminate a cycle for them. 

There are lots of amazing supporters here that truly understand the pain of CH's and will help answer any questions you may have.   

 

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Hey Arcan,

Although 80% or so of CH'ers are episodic, I think you'll find a significantly higher percentage of chronics here at this site since this is where people often come as a last resort after meds have failed (only to find it should've been the first resort!).

Personally, like you I'm a lucky episodic who started off with one month per year.

Here's something I've noticed after reading many thousands of posts from CH'ers: It is common for remissions to become longer and longer as the years and decades pass.

When you've had 'em for 30+ years like me, you can find yourself going many many years between episodes! Of course there's no guarantee of that good fortune befalling any of us, and hell I could go chronic myself any nanosecond now, but I've certainly been lucky with the ever extending remissions.

There certainly have also been plenty of reports of CH burning out completely by the time we reach elderly status.

Plus there's the chance you could knock out entire episodes with busting anyway, so basically the future looks pretty bright.

About the imitrex - that's a tuffy IMO. If I were you, after reading the warnings, I'd bust as a preventative, and use O2 as a first choice abortive, only considering imitrex injections as a back up. Um, because that's what I do.  :D

I think it's possible imitrex can make attacks worse. Or was that just going to happen anyway? My attacks became worse after several years with CH, but that was before imitrex was even invented. I had been prescribed prednisone though, and that could've made mine worse (??)

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Thanks for the warm welcome guys :)

Though this may not seem very smart to you guys, I'm not planning on doing any busting just yet because at the moment I'm giving the verapamil a shot. It seems to be working OK and with the o2 it's quite bearable, so if I throw in some red bull, ginger and a non-rebreathable mask I might be good to go :) In the meanwhile I'll be looking around here to get informed about my options, so that when the time comes I know what to do, but there's an awful lot to read and it's quite difficult for me to concentrate, especially because I'm not a native speaker.

About those trigges: how fast do you get an attack after being exposed to such a trigger? Is it within minutes? I'm not sure wether alcohol is a trigger for me or not.

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If alcohol is a trigger for you, you WILL know it.

Not to be a downer or anything but verapimil will slowly suck the life out of you. It works well for most people for a time. For me it worked well for nearly two years. I am chronic. By the end Of two years I felt like I was in a 90year old body. Bad bad bad.

I found mushrooms after trying everything else over a 7year period. The mushrooms take all of my pain away for extended periods of time. Oxygen takes care of me otherwise. I highly recommend that if possible you try mushrooms. you never know if alternatives work unless you try it.

Just my opinion.

Glad to have you join us on the board.

Dan

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Well I think you're very smart to be researching your options Arcan, because you never know when this beast will stop responding to a treatment, and it can really save you to have a back up plan all ready to go in such a case.

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You do a great job for a non-native speaker, Arcan!

I have found that the word "trigger" is used here and in other CH discussions in a variety of ways.  Some triggers, such as alcohol, seem to create a headache almost immediately in many people.  (But some people are not triggered by alcohol at all, and some are triggered by some kinds of alcohol but not others.)  Other triggers are viewed as bringing on headaches that are worse than "normal," but not necessarily immediately (maybe later that night).  I could make a very long list of things that people describe as triggers, from stress to chocolate, perfume to tobacco smoke, gas, flying in an airplane, etc.  Unfortunately, because CH operates so differently in many ways from person to person, each person kind of comes to identify his or her own triggers.  For many people -- I would say most people -- things that trigger headaches while they're in cycle do not trigger them when they're out of cycle.

Other people might comment on your decision to go with verap, O2, and other strategies.  I know that for my daughter (whose CH began when she just a little older than you), and I think for many people, her CH attacks were more manageable when they began, and became more difficult over the years.  For about six years she used nothing at all to prevent or abort attacks, just gutted through them.  So you might also have many years of relatively mild episodes that are manageable for you with oxygen and some other basic treatment.

This is just my opinion, but if you're having success now, I would say to go with it but always remember that there are options.  I think many people here feel that if busting materials were not "illegal" and therefore not "mainstream," busting would be the preferred medical treatment for CH.  I took me a long time to understand that.  (I put "illegal" in quotes there because it is perfectly legal in most places to own RC (rivea corymbosa) and HBWR (Hawaiian baby woodrose) seeds, from which many people create the busting agent LSA.)  And short of these "non-mainstream" treatments, there are things like licorice root and vitamin D3 that are showing themselves to be quite effective for some people.  I guess I'm just saying that if you start having side effects you don't like (as you said in your first post, the verap does lower your blood pressure), consider the alternatives.  We all will hope that it will be a long, long time between your cycles and that you'll continue being able to manage them well.

Sorry to go on so long, but regarding oxygen, do you have a good sense of what you have and what you need?  How high does your regulator go?  From what you describe, you might not need a lot of oxygen, but is your tank large and do you have another smaller one for portability?  Are you planning to ask your oxygen supplier for the mask or get one on your own?  No need to answer these questions if you're confident you have what you need, and they might be more important way down the road than they are right now, anyway.

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Of course, if I were chronic I'd think twice about using verapamil daily, but at the moment I'm still using a low dose and it does seem to be working so far, I've been attack free all day \o/ The second I'm experiencing nasty side effects or if it becomes less effective I'll be switching to plan B ;)

Speaking of which, I haven't been through all the posts yet, but does anyone know if the licorice root treatment could work to avoid cycles?

Thanks CHfather, and sorry to hear about your daughter, must be quite hard :/ In response to your questions about my oxygen set-up, I have two pretty big tanks (not quite sure about the volume, but they weigh about 20 kgs each :P), which goes up to 15 lpm, with one of those water-thingies. As for the mask, I can get the original "accessories" for free once a month so I'll see if I can switch to a mask for april. I don't have a portable one though because it still looks like a pain to carry around (not to mention how people would look at me in school :P) so I figured I'd go for redbull and imitrex.

Oh and thanks for the good news about cycles becoming worse :P

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With any luck at all, Arcan, there will be a treatment for something like permanent remission of CH before your cycles get worse -- if they do.

Speaking of which, I haven't been through all the posts yet, but does anyone know if the licorice root treatment could work to avoid cycles?

Here's the link to Les Genser's thread about licorice root.  I would try to say what I think his view is about preventing cycles, but he has been extremely generous with his time and I'd bet that he will answer a question you put to him there.

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1293084254

The D3 thread that I mentioned in my first post, over at the ch.com board, contains suggestions that that regimen may be preventing cycles.  That's a good board for you to know about/visit anyway, since they talk a lot more there about "mainstream" treatments like verap and imitrex.

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Yeah, I started reading that thread but I haven't gone through all 8 pages yet, plus his posts are huge so I figure it'll take me a while :P

I'll start reading up on that D3 treatment as well, thank God I should have about a year until my next cycle!

What has been your experience with all of this, if I may? Have you managed to get it under control?

Thanks for helping me out btw :)

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What has been your experience with all of this, if I may? Have you managed to get it under control?

It's one reason I'm not a "hero," Arcan.  I don't have CH; I've just been trying to help my daughter and learning as much as I can.  She's episodic (twice a year: when fall changes to winter and when spring turns to summer).  RC and O2 made her last cycle a lot easier and seemingly shorter, and we're hoping that a combination of strategies might prevent or diminish the next one (which we'll find out about pretty soon).  People here were wonderfully helpful to me/us in many ways; I stick around to learn as much as I can and to pay it forward.

As for her, she has a very demanding, high-pressure job that she's been able to retain despite her CH (her cycles were typically lasting about 10 weeks), and she appreciates how precious life can be a lot more than a lot of her peers do.

She has low blood pressure already, so she never could take verapamil; she reacted very badly to steroids (she and I are both pretty violently "allergic" to them); she hated the idea of injecting herself with imitrex.  It is suspected that one reason the RC worked so well for her is that she never really had the "busting blockers" in her system (Les has a similar hypothesis about licorice root working better for people who have not used a lot of "mainstream" meds, or not used them in a long time.) 

Also, her doctors either didn't prescribe oxygen or misprescribed it (with cannula/concentrator), so she suffered needlessly for many years, which is one reason I tend to jump in here when there's an oxygen issue involved.  If I can keep anyone from, as I say, suffering needlessly, it seems important to do it.

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Yeah, I started reading that thread but I haven't gone through all 8 pages yet, plus his posts are huge so I figure it'll take me a while 

I don't think you'll extract a crisp answer to your licorice root question even from reading the whole thread.  Maybe you want to do that just out of courtesy, but I also think you could just ask your question at the end of the thread, if you want to.  I think I can guess what Les's answer would be, but I wouldn't mind seeing it myself.

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I disagree, I can imagine what you go through when you see a loved one in that much pain isn't much fun either, and people doing what they can to help out strangers are pretty rare as well.

All right, I'll ask it then, but I'm holding you responsible if people say it's a retarded question :P

BTW when you say the licorice treatment might work better w/o mainstream meds, do you know if that includes verapamil? I swear I'll stop asking questions and start doing more research before asking, but I'm already behind schedule so I don't have that much spare time. Ahh the pressure.

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I don't recall him mentioning verap as something that gets in the way.  I do think he would say that imitrex does get in the way.  He did say that you should check with a doctor or pharmacist before starting licorice root if you are taking any prescribed meds. 

For "preventing" during a cycle he recommended a 3-times-a-day regimen, but he said he got off that after a couple of weeks because that's a high dosage of a strong medicine.  (That's why I'm not sure about "preventive" use off cycle -- it doesn't seem that you could take "preventive"-level dosages for any extended time.)  My daughter, along some people here at this site, really likes it for its mood-elevating qualities.  She takes it once a day.  We're hoping, of course, that maybe that will have some preventive effectiveness.

The rule here is that there's no such thing as a stupid question.

If you do try the licorice root, you might save some overall reading time by trying to make sense out of this attempt at a summary: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

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Hi everyone!  I was diagnosed with having cluster headaches 6 years ago.  The doctor thought it was stange because I was a 20-something year old female having this killer pain behind my right eye.  My cluster period lasted about 6 weeks and then vanished until this year.  About 2 months ago, my 18 month old son started waking up every hour (he went through a bout of seperation anxiety...) and because of this, I was not getting much sleep.  Anyway, I started getting headaches again, they were painful, but I was in denial that they were the same as 6 years ago. 

About 2 weeks ago, my mom started getting the same kind of headaches.  She went to the doctors and was diagnosed with having cluster headaches as well.  We think it is strange that we are both having a cluster period at the same time.  My headaches are not always so bad, I only get them at 2am, and not every night anymore.  However, I always feel like my face/eye area is sore, and so is my scalp.  I am afraid to go to sleep because I fear getting one of those eye splitting, painful ones, so I stay awake as long as I can and just pray that I don't get one tonight.  I guess I just wanted to know how others deal with the pain and the fear that comes with it.  I take 2 advil before bed since pain meds do NOTHING for the pain once it is already there.  All I can do is go downstairs, get the icepack, and pace around the room.  I pray, I whimper, I promise God that I will do anything if He just takes away the pain...  Just glad to see I am not alone!

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Just please don't overlook the good news about people that are avoiding cycles altogether with busting.

Of course not, you have no idea how grateful I am for finding this site :) And thanks for the imitrex tip, I don't think I'll be needing it this cycle, but at least now I'll know what to do in the future.

Thanks for the summary CHfather, I'm all ready to go if the verapamil doesn't work, but I don't feel too good about already calling my doc a few days after she started me on a (working, so far) treatment, and saying "hey I decided to go for another treatment instead!" if you get what I mean.

Christinauj, you don't have to go through all that pain. Pure oxygen can stop attacks in a few minutes if used in time, and there's a bunch of other treatments to prevent cycles altogether, all of which you can find out about by reading CHfather's first post at the top of this thread.

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Christinauj, so sorry to hear about your suffering, and your mom's!  Everyone here can relate to your pain and your fear, and they will help you at least make it manageable, if not defeat it altogether.

Yes, as Arcan says, please go back up this thread to my post to Arcan (and read all the posts in this thread, which suggest some other things to do until you get oxygen, such as chugging RedBull). 

The advil probably won't help a bit -- and neither, unhappily, will any other pharmaceutical pain reliever.  You gotta get oxygen, fast!  Please read this: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

 

I strongly recommend that you start a new thread so that more people will see it and you will be easier to find.  But however you do it, post your questions and they will be answered.  In the short run, you need to get in touch with your doctor and get oxygen prescriptions for you and your mom.  But first, read that file I linked you to, so you know what to ask for--what to demand.  Even when a doctor, such as Arcan's, is on the ball enough to prescribe oxygen, they still can mess up the prescription (as Arcan's doc did).  The sooner you do all this, the less time you will be spending pleading with God (an experience very familiar to many people with CH).

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I don't feel too good about already calling my doc a few days after she started me on a (working, so far) treatment, and saying "hey I decided to go for another treatment instead!" if you get what I mean.
Totally get it.  You've done a great job of preparing yourself with knowledge and options.  Keep in touch.  Let us know how it's going.
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