Hi!

My name's Michael, and I was diagnosed with cluster headaches in mid-February.  I've got a ton of questions about them and this site has been the most helpful I've found so far.  I do have some questions, but I've never really posted on a message board before, only read on them; so I may have posted in the wrong spot.  I apologize if so.

I'm in what I believe to be at least my second cycle at age 26.  Last year in May I went to the doctor with an intense headache on only the right side of my head.  The pain was so immense it felt almost as if it were a physical pain.  I recall describing it that way as well at the time.  The doctor took the time to go through an x-ray and everything, and was quite thorough I thought and ultimately we decided it must be sinus pressure since I was having some nasal congestion at the same time.

Flash forward to mid-February 2012 and I'm having daily headaches on the right side of my head and judging by what I now understand to be the Kip scale (which is fairly close to my own scale I was judging on before) I was experiencing multiple headaches daily.  One day in particular had four separate headaches in degrees ranging from a 5 to a 7.  I had through the week attempted to eliminate possibilities that it might be something environmental or dietary (I honestly thought it might have been Diet Mountain Dew for a bit).  After meeting with my Doctor at the end of the week, I mentioned that my eye had been watering excessively and I thought my allergies were picking up but only in that one eye she put two and two together and realized cluster headaches were the culprit. 

We've tried some things, but ultimately we've found that Topiramate is best for daily prevention.  It hasn't stopped them completely, but I have more days at 3 and 4 than 5 and 7.  I can tolerate the lower end of the Kip scale much better as well.  I am currently in the process of moving my dosage up to 150mg/day.  I am at 125mg/day and suspect that it will need to go to at least 175mg or 200mg/day before the days without headaches outnumber the days with, but we're still hoping to hit a lower dosage solution.  The side effects of "dopeyness" are somewhat true for me, but I work 40+ hours and go to school full time 18 hours per week, so a lack of sleep keeps me not all there sometimes anyways. 

For times that the headache becomes too much to handle I have a prescription for Maxalt 10mg.  This works fantastic for anything on the Kip scale 7 and below.  Only once have I had anything worse that I required a second Maxalt 10mg tablet for so far.  There unfortunately is no generic and my insurance only likes to pay for about 6 pills every 2 weeks or so based on the type of drug.  I have to be selective about when I can take one.

I'm sorry for the long introduction, but I wanted to establish the background for my questions.  I really appreciate any feedback that can be given.  Here we go:

Terminology: As indicated above, Topiramate would be a preventative and Maxalt would be an abortive? Is that correct?  The abortive is what you take or do to get rid of the headache?

Switching Sides: Do your headaches ever change sides?  I've predominantly experienced almost all of mine on the right side of my head, however out of the probably 75 I would estimate I've had since February I would say maybe 5 have been on the left side.  They have never changed sides during.  This leads to my next couple of questions...

Whole Head Headaches: I have on exceptionally rare circumstances (once or twice out of that 75) had a whole head headache.  It is possible I may have mistook it for one that was along the middle of the right or left as sometimes the pain feels as if it burns and radiates, but it seemed to be all over.  Is it possible while in a cycle to experience just a regular headache or a whole head headache that's just normal and unrelated to the cluster headache? 

Regular Headaches: While you are out of a cycle do you get regular headaches?  The reason I ask, is between May of last year and February of this year I certainly had headaches, I recall one or two being enough to prompt me to take Advil, but does having cluster headaches confine your headaches for the most part to your cluster cycles?

Cycles: My understanding is that cycles can vary in length, but for the most part are longer the younger you are and shorten in length as you get older - is that true or is this rumor or myth or is there any evidence or truth to this? Is there some type of hope?

Triggers: What are some of the triggers that others have for their headaches?  I haven't been able to nail down any of my own as of yet. 

Headache Diary: I've been trying to keep a headache diary, but it's really difficult to keep up with a notebook throughout my day. I do have an iPhone, and I've looked in the App Store, does anyone have a recommended App they use?  Does anyone else keep a diary?  What kind of details do you record? 

Other Approaches: Have you ever tried any other methods of relief?  Anybody ever tried acupuncture for relief?  I'm not above trying just about anything at this point.

Work: What do you do when the headache hits you at work and all you want to do is get away from everyone? Do you have some type of medical leave setup for this?

Dealing with People: How do you handle those people who seem to think that you don't have a real problem?  Or, the ones who assume that you have a headache and so it must just be sinus pressure or something simple like that.  So far, my policy has been to politely appreciate their opinion and go on about my business, but it is incredibly frustrating at times. 

I'm sorry for asking so many questions, an I'll probably think of more once I've had some sleep and it's not 4am, but thank you all very much in advance for any feedback you could provide!

Michael

Mikey85 wrote on Mar 21^st, 2012 at 4:57am:

Hi! I really appreciate any feedback that can be given.  Here we go: Terminology: As indicated above, Topiramate would be a preventative and Maxalt would be an abortive? Is that correct?  The abortive is what you take or do to get rid of the headache? You are right. We have generally found the tabs to be too slow to be really effective and many opt for the self injectables or nasal sprays. Of course the best of all aboritves is 100% O2 at high flow rates with a nonrebreather mask. Switching Sides: Do your headaches ever change sides?  I've predominantly experienced almost all of mine on the right side of my head, however out of the probably 75 I would estimate I've had since February I would say maybe 5 have been on the left side.  They have never changed sides during.  Sometimes. One of the telling indicators that this is CH vs. some other cluster like conditions is the consistency of the attacks, both in time clusters and in character (ipsilateral, eye tearing, nose running, etc) Whole Head Headaches: I have on exceptionally rare circumstances (once or twice out of that 75) had a whole head headache.  It is possible I may have mistook it for one that was along the middle of the right or left as sometimes the pain feels as if it burns and radiates, but it seemed to be all over.  Is it possible while in a cycle to experience just a regular headache or a whole head headache that's just normal and unrelated to the cluster headache?  You need to check with your doc about this, but in general, I and others have found repetitive hits from a CH will actually kick off a fairly major migraine, or generalized headache. Then I have to pop ibuprofen to get rid of the general headache while dealing with the frequency of cluster hits. Regular Headaches: While you are out of a cycle do you get regular headaches?  The reason I ask, is between May of last year and February of this year I certainly had headaches, I recall one or two being enough to prompt me to take Advil, but does having cluster headaches confine your headaches for the most part to your cluster cycles? Sure. One has little to do with the other, I think. Stress headaches, sinus headaches, tension headaches...all come as normal. We are no more, and no less, susceptible to them just because we have CHs. Cycles: My understanding is that cycles can vary in length, but for the most part are longer the younger you are and shorten in length as you get older - is that true or is this rumor or myth or is there any evidence or truth to this? Is there some type of hope? Myth. Mine began 35 years ago as short and rather unpredictable. Fast forward and I became chronic, which has its own type of cyclic character. Cycles will vary, and the only predictable thing is the unpredictability of the beast's nature. Triggers: What are some of the triggers that others have for their headaches?  I haven't been able to nail down any of my own as of yet.  Common are alcohol, smoke, varios scents, some wines, sleep, rest, exertion, relaxation, you name it, it could be a trigger and if you identify one for you, it's best to avoid it. Headache Diary: I've been trying to keep a headache diary, but it's really difficult to keep up with a notebook throughout my day. I do have an iPhone, and I've looked in the App Store, does anyone have a recommended App they use?  Does anyone else keep a diary?  What kind of details do you record?  Don't know but there is a headache app mentioned in one of the forums here. Other Approaches: Have you ever tried any other methods of relief?  Anybody ever tried acupuncture for relief?  I'm not above trying just about anything at this point. Explore the O2 link; and consider exploring Clusterbusters for a homeopathic approach. Also, take a long look at the Vitamin D3 regimen under "123 days pain free and I think I know why". Work: What do you do when the headache hits you at work and all you want to do is get away from everyone? Do you have some type of medical leave setup for this? I grab my favorite abortives, energy drink and O2, hide somewhere, and abort. For the intractable hits, or hits at the most inconvenient times, I will also inject imitrex or snort migranal. Dealing with People: How do you handle those people who seem to think that you don't have a real problem?  Or, the ones who assume that you have a headache and so it must just be sinus pressure or something simple like that.  So far, my policy has been to politely appreciate their opinion and go on about my business, but it is incredibly frustrating at times.  Tell them to visit this site. Otherwise, we largely stopped trying to explain these things since most people, including some docs, have no reference point for what we endure. I'm sorry for asking so many questions, an I'll probably think of more once I've had some sleep and it's not 4am, but thank you all very much in advance for any feedback you could provide! Never apologize. Good and thorough exploration. You are on your way to better and more effective management of this hideous creature. God bless! lance Michael

As usual..Wimsey is spot on in his advice. I'll echo a couple:

The D-3 regimen. It's a daily supplement program of D-3, magnesium, Calcium, Zinc and Fish oil. It's only pennies a day, it's good for you even without CH, and it's providing relief for many who try it. Go the medications section, and check out the post "123 pain free fdays and I think I know why"

Then read this link on oxygen therapy. I pulled off  30 year career in law enforcement by always keeping a small E-Tank in the trunk of my cruiser while on cycle. I feel beasty rearing his ugly head, pull over, suck oxygen, 6-8 minutes later I'm pain free and in service again. Pretty amazing how fast and effective it is. And cheap too, not much to dislike:

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As far as triggers, for me when I'm on cycle my triggers are alcohol, sustained stress, extreme hunger or significant sleep cycle disruptions. Triggers tend to vary so it's just something you have to try and monitor. Avoiding triggers won't stop attacks, just reduce the number.

Keep asking questions, knowledge is one of your best allies against the beast. Welcome to the board.

Joe

Thanks gentlemen.  I really appreciate your responses.  You've cleared up some things and given me a bit more homework to do.  I am definitely going to keep looking into some of the things you've suggested, especially the energy drink part and the D-3 program.  Thanks again guys!

Michael

Good questions Mikey... I am 8 months in to my diagnosis of Clusters and had a lot of the same ones.  And thanks to those who answered!

Off to call the doc about O2 therapy...