My first share - My experience

[BustOrNothing]

Hi all,

First off, I’d like to say I am so grateful to have a place like this that contains so much info pertaining to cluster headaches. The wealth of knowledge and others’ experiences are priceless and have gotten me through some of the most trying times of my life. I am so sorry that anyone would have to go through this pain, but it helps to know that I am not alone in this struggle. Finding this site some years ago was a godsend.

My story, oddly enough, began around the age of 15/16 when I experienced my first EXCRUTIATING (which I feel is putting it mildly) headache. It was the most intense pain I’ve felt in my life, always on the right side of my head, behind my eye/temple/upper jaw region, BUT at the time it would last only a couple of minutes. This went on for about a week or two. I saw my family’s primary care physician who brushed it off as a “fluke.”

It wasn’t until I was 21 when I was getting a full cycle of cluster headaches, which at the time I did not have a diagnosis for. I have been to urgent care centers, ERs, general neurologists, and it wasn’t until my last cycle (about 2 years ago) that I went to a headache specialist neurologist who diagnosed me officially with cluster headaches. My headaches were so bad at the time that even though I had an appointment with him in two days, I felt I NEEDED to go to the ER to make sure nothing was wrong, get scans of my head and such. When I finally had my appointment with the headache specialist, he told me that everything that I had been prescribed up until then by doctors, who had no idea about cluster headaches, was garbage. Extra strength acetaminophen, opiates, oral imitrex, etc... he prescribed me nasal spray Sumatriptan and gave me advice on breathing 100% O2 to abort an attack.

I am now 27 and my cycles have come almost exactly every 2 years. They start around August and last about a month and a half to two. The headache typically lasts anywhere from 45min-3hrs(at most). The first inkling that I get of a cycle about to begin is a slight pain, almost like a squeezing in my upper teeth/jaw on the right side. It starts off as slight pain, which I now understand to be shadows. It progresses to a full blown cycle, where at the peak I get up to 3-4 headaches in a day. Totally debilitating. 11/10 pain. Feels like my eye is being pressurized to the point of it going to pop. Stabbing pains behind my eye. Feels like so much pressure my skull wants to burst open, so much so that I can feel it in my ear canal. I get the droopy right eyelid, eye gets very red, teary and burns, and stuffy nostril on headache side. I cannot sit still. I have to pace, rub my head, pull my hair. I even told the headache specialist that I’d rather die than experience this forever, which he said is very common with cluster headache sufferers. That was before I knew that this was a cyclical ordeal. The only thing that gets me through these times is the glimmer of hope that this cycle may end, and I can potentially get some headache-free remission time.

From my experience these are my known and most common triggers: Alcohol (which I haven’t drank in about a year), red meat (also have been vegetarian for about a year so I don’t eat meat anymore), heavily seasoned foods, any type of smoke (from blowing out a candle, foods cooking on a stove/grill, second hand cigarettes, Mary J), I can toke a little herb off cycle but on cycle it is 100% a trigger for me (also a good test to see if I am still in cycle as it is ending), chocolate, msg (mainly from Chinese takeout), extreme changes in barometric pressure, artificial sweeteners, abnormal sleep schedules.

My “go to’s” for aborting a headache include: 100% O2 first and foremost. If I am not at home I do not have a travel tank of oxygen, so at the first feeling that I will get a headache is a BC powder (845mg aspirin, 65mg caffeine) with a coke, which usually, depending on how early I catch it, can keep the pain from reaching a 10 (mostly in the 6-8 range), though sometimes it still gets to a 10 even with the BC. I have nasal spray Sumatriptan, but from what I read, it tends to extend cycles / cause more headaches, so I have yet to use it. I’d rather succumb to the beast than extend my misery by more than need be.

Currently I am in a cycle (about 2 weeks and some change in). This one has come earlier than my previous cycles, which are around August typically, so it’s a bit odd. Also, the 3-a-days headaches started after a week of being on this cycle, which is also odd, because the most intense part of my cycle normally starts about 3 to 4 weeks in and is usually a good sign that I have reached the peak and will start heading toward the end of the cycle. As usual, I came back to this forum for motivation to make it through these dark times by just reading through other people’s experiences. Makes me feel less alone because, although my family and friends realize I am miserable, they can never understand the way that anyone here does.

I’ve recently read about “busting” since I got an account here. I have been doing my research and may try busting or getting on the D3 in the near future. Hats off to you guys who spent the time and energy in to compiling this wealth of knowledge for everyone. You guys are true heroes.

I’m not too sure why I’m sharing this. Maybe because I’ve found some sort of comfort reading through familiar experiences and wanted to give someone else something to read to distract from our ugly reality. I’ve heard that people tend to reach out in times of hardship because there is some solace having someone to share your misery with. 

I know I have it “easy” compared to some of you with chronic clusters or more frequent cycles / shorter periods of remission. I have the greatest sympathy for anyone experiencing this in any capacity. 

Much love to you guys. Here’s to wishing for headache free futures for everyone.

[ThatHurtsMyHead]

BustOrNothing,

Welcome to the family.  Your intro was awesome (well as awesome as anything about CH can be anyway).  

Yea, I don't think anyone gets us accept another CH'er.  Well there are a few here and there.  CHFather supports his daughter with CH and has been around here helping others for quite a few years.  He's a wealth of information on CH (and a really great person as well).

Feel free to poke around and ask any questions on busting.  The folder Theory and Implementation has lots of info on busting.  As well as the ClusterBuster Files folder.

Cheers!

J

[Pebblesthecorgi]

Greetings fellow traveler.  Sounds like you have a good plan.  D3 is readily accessible and has a low risk vs benefit profile.  Busting is a bit more involved but truly worth learning about as an option.

[Woobyjay]

Greetings cluster warrior . My triggers are almost exactly the same. I can say that after being chronic 7-10 daily that busting and d3 and this group literally saved my life and Gave me My life back. Welcome friend. I’m happy we all have each other. 

[spiny]

Your 'share' will help others.  Many will read it and relate. 

Now that you are a member, the closed boards are available. That is where the busting info and posts will normally appear. We keep those boards for members only. When discussing busting, post that question or thread on Theory & Implementation or Share Your Busting Stories. You will get more replies there. Being closed keeps the Bots from accessing that info. 

The D3 Regimen has helped many either get pain free or at least it slows ramp-up time and lowers the max intensity. It really does help a lot of people and is just taking vitamins to fight inflammation. It is always worth doing! 

And I will say Congrats for avoiding the Trex. I am lucky in that I cannot take it, so I never had to deal with coming off of it! It can be really rough to ditch when you are now having more hits and worse hits from taking it. For some it does work very well. For others it works, but which 9 hits do you kill for the month? That is a tough question. 

Likely you have read a bit on the 'morphing' of CH at one time or another now. It is disconcerting and a big worry for most when it does morph and change on you. Rather like 'Wait, what?, what happened here? But it is also common. Which can suck.

Welcome aboard and thanks for a great intro! Knowing your triggers is very important and gives you a bit of control. 

ATB!  

 

[FunTimes]

Another thing that may help when you are out and do not have your O2 is energy drinks like 5hr energy. I have also user Monster and Rockstar type energy drinks. I would see if your oxygen company can get you a smaller E size tank to keep with you in your car. Sounds like your on the ball with everything your have done so far. I would maybe add a journal to logg all your attacks, what you did to abort them and how long and painful they were? You can them look back to see what has helped to end the pain a little better then some other things. 

[CHfather]

15 hours ago, BustOrNothing said:

I have nasal spray Sumatriptan, but from what I read, it tends to extend cycles / cause more headaches, so I have yet to use it. I’d rather succumb to the beast than extend my misery by more than need be.

 

4 hours ago, spiny said:

And I will say Congrats for avoiding the Trex. I am lucky in that I cannot take it, so I never had to deal with coming off of it! It can be really rough to ditch when you are now having more hits and worse hits from taking it. For some it does work very well. For others it works, but which 9 hits do you kill for the month? That is a tough question. 

Acknowledging spiny's strong knowledge, I'm not sure I agree.  There is probably no question that triptan overuse will have many bad effects, probably including rebounds and maybe including extending cycles.  On the other hand, so much of this is guesswork.  Look at your current cycle--came sooner, has been more severe (so far). If you were using triptans (now or before), you might be inclined to attribute it to that.  My daughter has virtually never used triptans, but her cycles seem to keep getting longer and she has plenty of what seem like rebound attacks. (Many people get wicked rebound attacks from busting, which we call "slapbacks." That's a different situation for many reasons, but not completely un-comparable.)  So I would say that if you're heading for a long one that your O2 + caffeine isn't stopping, you might weigh the amount of misery reduced by the spray (assuming that it works for you) against whatever the probability might be that moderate use of triptans might have undesirable effects.

Is your O2 setup optimized? Forceful breathing technique; flow rate such that you can use good breathing technique without waiting for the bag to fill; top quality mask (ClusterO2 mask)?

Yes, get started now on the D3, and consider busting, and be sure you are doing all you can to manage this.  If you haven't seen this post, I'd recommend reading through it: https://clusterbusters.org/forums/forum/6-clusterbuster-files/

Be aware that there is MSG in a lot of prepared foods, not just your Chinese takeout.  I've had it in a hamburger, a fancy lobster dish, a Philly cheese steak, and pizza, among other things. (I know because MSG almost instantly gives me pancreatitis, which is the second most painful thing to CH in some big studies (still far behind CH in painfulness).)  Check labels.  You can't do much about it when you're eating from a restaurant, but maybe you might check back on days when your attacks are more severe to think about what you ate.

[Dallas Denny]

Welcome to the community Bust, sorry you had the need to join us!! Awesome first post!

Dallas Denny 

[BustOrNothing]

Thanks so much for the responses! I feel incredibly welcomed to the family. Glad to have you guys with me.

Pretty cool, I must say, to be hearing from you guys that I have read so many replies and posts from over the time that I have been lurking the forum.

CHFather, thanks for the input on the triptan usage. I’m worried not only about the potential rebounds and extended cycles, but also because my doc told me about some side effects that could affect my heart. 

I also do not take the energy drink route because they tend to negatively affect my heart and make me feel weird, even off-cycle. Not too sure why just caffeine doesn’t have the same effect on me during an attack. It’s probably the main reason I am scared of using the Sumatriptan. I’m nervous that it will have a negative impact on me. I’ve been really tempted to use it while my head is banging, but it’s the fear in the back of my head that keeps me from touching it.

I am lucky with the oxygen. I never had to get a prescription for it. I work in a shop that fills oxygen tanks and can order anything I need and fill it through the shop. My O2 tank has an oxygen demand valve that provides me with a perfect breath of oxygen every time I inhale, as opposed to the non-rebreather mask with the bag. I breath it for 10-15 minutes after the headache has been aborted.

Any recommendations for other oxygen breathing techniques or equipment?

Sorry to hear about your pancreatitis. I’ll have to keep an eye on the ingredients to watch for MSG in other foods.

At one point I did keep a HA journal, but I have not been keeping it for some time now. I may have to pick that back up.

I’ll update everyone if I get on the D3 regimen or try busting and share my experience.

Thanks again for the well wishes.

[CHfather]

Your triptan decisions are completely sensible.  I just wanted to be sure you saw the other side.

Great that you have such a good O2 setup!  Only advice, which you might already be using, is to be sure you get as much air out of your lungs as you can before your first inhale and after subsequent exhales.  Hyperventilation as Batch recommends, or at least a good forceful "crunch."

I don't think the D3 regimen should be an "if."  Even if it doesn't help you right now, most people find that it's generally good for them, and it will help you with the next cycle.  Two years is far away, though (if your pattern continues), so I can see why you might want to start it later.  Just don't completely let it slide, would be my advice.

[BustOrNothing]

Thanks!

I have not paid much attention to my exhales but will definitely do the forceful exhales next time I breath it.

You’re right. I don’t think I should pass up or hold off long on the D3 regimen with such a low risk to high reward ratio.

You’re responses are very much appreciated CHFather. 

[spiny]

Bust, the Energy Drinks make me sick and shaky. I keep coffee in the fridge made by the 'cold brew' method. Namely, you put grounds in the holder that goes in a jug and stick it in the fridge. In 24 hours, you have cold brewed coffee. Just convenient for me. I used to just make extra coffee and keep it cold for a hit. Caffeine alone works well for me and some others as well. 

If you can enjoy a cup of coffee with no issues, then I would try that. Cold is best for most CHers. Just the cold seems to help at times. 

Someone once said ' One for drinking and one for rubbing.' They were saying that they drink one and rub a can of whatever worked for them where it hurts. 

[FunTimes]

Spiny, it is funny you say that

24 minutes ago, spiny said:

' One for drinking and one for rubbing.'

I have done this so many times and it just clicked when you mentioned that. 5hr drinks can of soda bottle of water. I have had them all pressed against my temple and neck at one time or another. 

[jon019]

2 hours ago, spiny said:

of whatever worked for them where it hurts. 

...or a bag o' frozen peas.............

[BustOrNothing]

Thanks spiny.

I’ll have to try the cold brew coffee. I hate the energy drink sickness! 

I’ve definitely rubbed many cold drinks on my head. Funny that we can all relate to that.

[dehabel]

My kids at a very young age learned to get me bag of frozen vegetables...I hate it when they defrost in the bed!

[spiny]

If you like coffee, I suspect you will enjoy the cold brewed version. Easy and less bitterness to it. 

I use this daily now at about 7pm. I am not in cycle. but I will get a shadow some evenings. I have found that a cup of 'preventative' coffee helps ditch the shadow before bed every time for me. And hey, we have to live with this, so buying really nice coffee for that after dinner glass of iced coffee is being nice to yourself.  You deserve it! 

[spiny]

dehabel - That cold stream running down your neck is not very pleasant! I've labelled peas that were returned to the fridge as "CH' so they don't get eaten by mistake.  

[1dallis1]

BustorNothing, reading your post felt so dang familiar to me. Your cycles and rhythms are very close to mine. To include your comments about the 3-a-days being unusual, I am in a cycle where this is exactly happening to me too, thinking it's weird because it's so early in the cycle giving me false hope of the peak. I just made my first post earlier, but we share the same views on the sprays and O2 and energy drinks. But honestly, with this cycle being way different than those before, I've had to drop my resistance and spray then mask.  Other wise, I keep having to go back to the tank, draining it much faster than typical. Anyway, glad you popped on here and hope to hear more about your PF days ahead!  I started my D3 regime a few days ago, fingers crossed that it'll at least dull the edge or take the beast to a managible shadow. 

[Sixcsetpence]

Aw man, that really sucks. I've had cluster headaches for 8ish years now. My cycle can be pretty hellish. For 6 months or so (starting around March) I get 4-5 cluster headaches a night that are long lasting (30 min to 3 hours) and little sprinkles of them that last throughout the day. These last only a few minutes, but I feel like I never get a break. Fortunately for another six months I usually get a short one (10 min) in the morning, and I am pain free for the rest of the day!

Aw man I really do feel your pain, and this site is pretty great. Just to let you know, me and the others on this site really understand your pain, and you aren't alone. So keep being strong and pushing through with it! You can do it! btw I'm 15 years old, so this might not mean that much from someone so young, but I believe in you!

 

[xBoss]

Welcome to the family. May your journey be awesome.