New to the site

[pro2see]

Hello everyone, I am new to the site. I have had these headaches for about 10 years but in the past 4 years they have gotten worse. I was told by my doctor that I was considered to be in the chronic category. I am glad I found this site. There is a lot of useful information. Thank you guys for sharing your stories and remedies. Maybe at some point I can slow these things down enough to at least get a few nights of full sleep.

[CHfather]

Welcome, Pro2'! Can you tell us what you are doing now to treat your CH? 

If you don't have oxygen, stop now, read this (https://clusterbusters.org/oxygen-information/), and start working on getting O2.  If you're not doing the D3, stop now, read this (https://clusterbusters.org/forums/topic/1308-d3-regimen/), and get started.

[pro2see]

Thank you Sir for your response. Well I have been trying some natural things out such as diet, sleep and trying to watch stress. With the risk of sounding foolish, I don't take any medicines because I do not want to deal with side effects. I watched my mother pop pills for most of my life and they did nothing for her but make her sick. I am looking into the D3. I believe some of those vitamins I take already. I don't have oxygen.

[CHfather]

"Foolish" might be too strong of a word. But lots and lots of people have tried diet, sleep, and stress reduction strategies without very good results (for the most part -- there have been some people who report that one diet or another helps them; most recently, a low-histamine diet seems to be helping some people).  The three treatments with the lowest side effects are probably OXYGEN (zero side effects, and extremely effective for aborting an attack), D3, and busting.  Have you read about busting in the ClusterBuster Files section (the numbered files)?  After that, we might get into the murky category of what we mean by "side effects," and maybe we'd say that melatonin and energy drinks don't have many immediately observable side effects.

[ThatHurtsMyHead]

Pro2See,

 

I can definitely attest diet can have a significant positive impact on attacks (not cycle).  I can reduce my attacks by 90+% by staying away from trigger foods:  (listed in order of how quickly after ingesting they trigger an attack).  Alcohol and chocolate can be as quick as 15 minutes.  High calorie / sugar deserts can be up to 4 or 5 hours later, but are quite consistent via TONS of tests I've done on myself over the years.

 

Alcohol

Chocolate

BBQ Sauce (not sure what in it is the trigger maybe MSG in combination with other spices)

Fermented cheeses (blue, brie, american, swiss etc.  Processed (fake) cheese is fine.

High sugar foods

Bleached white flour (white bread, cake etc).  Whole grain wheat bread doesn't trigger attacks for some reason

MSG (hit or miss on this one)

 

Also Sleep can have a significant positive impact.  When in cycle, I stick to a strict bed and wake times.  Sticking to the exact same time every day significantly reduces the night attacks.  If for some reason I stay up past midnight, I'm guaranteed a night of back to back attacks.  Also sleeping in a recliner, with your head slightly inclined over my heart is HUGE in reducing the night attacks.

 

PFW,

J

[CHfather]

J, I appreciate these clarifications, and I'm very glad you have made them available to pro2see. But really, 90 percent?  I guess it depends on what the baseline is -- If you're regularly consuming things that are triggers, you'll have a whole lot of attacks, and so I can see that if you stop consuming them, your attacks might go way down.  But once you're at some trigger-free baseline, I have seen only a few reports of diet having a significant effect.  As I mentioned, lately two people have said that a low-histamine diet has helped them a lot.  (My daughter tried it for three weeks and it didn't help her at all.)  There have been a couple of other reports from time to time of effective dietary treatments.  Unfortunately, those people never seem to come back to tell us of what they have subsequently learned.  We know that just "eating better," or even being full-on vegetarian or vegan, seems to have practically no effect.

 

I guess my larger point to pro2see was that, sure, you should optimize all lifestyle things that can affect your CH, but you're still going to get attacks. pro2see seems to think that the side effects of meds would be worse than his/her attacks, and as a result s/he doesn't seem to have been very ambitious about pursuing meds, whether pharma meds or non-pharma treatments.  I don't know what pro2see's attacks are like, but I think most people would make a different trade-off, minimizing side effects but treating/preventing attacks.

[ThatHurtsMyHead]

CHF,

 

If someone doesn't know the common CH triggers, then diet change can have a HUGE impact.

 

Case in point.  If someone drank beer regularly and got attack after attack, but they didn't know the beer they were consuming was a trigger...    They could easily significantly reduce their attacks by cutting the beer out (which is a diet change).  Before I first realized chocolate was a big trigger, I ate chocolate all the time.  Then one day something clicked that my afternoon bad attacks were always shortly after getting a chocolate candy bar from the vending machine at work.  I tried a brief test of no afternoon candy bar and my afternoon attack that day didn't happen.  Then I decided to eat one that evening.  Sure enough, BAD attack 15 mins later.  Diet change right there had a huge positive impact on my attacks.

 

I don't think the majority of those with CH realize how important diet change is to reducing their attacks (trigger avoidance).  I'd bet there are a lot of other food triggers that are more difficult to pin down.  For me to create that list above, was very time consuming (and painful) to take the time to do, but the return in the long run has been immeasurable.  

 

J

[CHfather]

You're absolutely right, I should know that triggers aren't obvious.  Some of yours are even surprising to me, and I tend to keep up pretty well on this stuff.  For many years I had serious attacks of pancreatitis (a very painful SOB), but no doctor could diagnose the reason.  They all decided that it was "idiopathic" -- no known cause.  Then one day after getting attacks after eating Chinese food, it dawned on me that MSG must be causing the attacks.  I was right, and have only had them since when MSG was in some food where I wouldn't have expected.

 

You have convinced me that maybe we should create a list of possible triggers in the CB Files section, and that we should refer people to that list in the same way that we refer them to treatment things such as the D3 regimen.  As you say, that could make a big difference for some people. I feel like at some point there was a thread about triggers, which also include some smells (perfume, gasoline). I'll look for that later, and maybe start a new thread to see what gets added.

 

I still think my general point to pro2see is valid: that managing diet, sleep, and stress will only get you so far, and pro2see really should be looking at other treatments, too.

[pro2see]

Most of my hits are in the evening after work. Usually around 5 p.m. They kick in. Most of the time they are a 4 or 5 on a scale of 1-10. But you can bet that at 12:00 midnight I will wake up with a 7-8, be up for hour with it then I will be so tired I could fall asleep right where I'm at. Go back to sleep and be up again with in an hour with another. So trying to get my sleep right is not working to well. I gave up my favorite night time snack to see if it helped and it did somewhat, but three attacks a day are normal for me. I am working now on getting an oxygen set up. Most of my daily and evening attacks usually only last 20 - 45 min but the ones I get at night after I have gone to sleep usually last 45 min to the dot. I want to try the busting, but am having trouble finding the MM. Last Thursday and Friday I was pain free, first time in 5 months, however Saturday was a beast and the after shocks have continued for the past week. Took 3 days for me to feel like a person again.

[ThatHurtsMyHead]

Pro2See,

 

For your night hits:  

1)  Try sleeping in a recliner so your head is slightly elevated.  

2)  Also try going to bed slightly earlier.  

3)  Keep a semi room temperature red bull (regular one), or a monster energy drink (blue low carb can) close by.  As soon as you wake with the first one, Hit an energy drink and then the O2 (when you get it).  I find that I'm so exhaused after the night hits, I'll fall right asleep right after the attack, regardless of the energy drink caffeine. 

4)  Some people swear by the 5+mg over the counter melatonin.  (It doesn't seem to help my night attacks, but quite a few others say it helps them.  You should take it 5 mins or so before going to bed.  Once the melatonin kicks in, you'll only be sleepy for a short while.  If you take it too early before hitting the bed, it will wear off, and won't help.

 

I'm very familiar with your night attacks and sorry to hear you get those SOB's in series like I usually do.

 

PFW,

J

[ThatHurtsMyHead]

Pro2See,

 

Rereading your post; I have one more thought.  Try making a dinner log (every single thing) that you eat in the evening for 1 to 2 weeks.  The timing of your night attacks, could be partially related to something you're eating.  You mentioned a regular bedtime snack you eat.  Curious, what is it?

 

PFW,

J

[CHfather]

J, I was going to ask you this in another thread, but didn't.  Have you found that the full 8-ounce energy drinks work better for you than the smaller energy shots, or are the big drinks the only kind you have ever used?  Is it possible that you made the choice of drinks over shots because the drinks have less caffeine than the shots, and they work, and you don't see any reason to get more caffeine than you need?  I ask this because based on observed and reported experience I typically recommend the shots (more caffeine; easier to get down quickly) over the drinks, but maybe I'm missing an important consideration.

[ThatHurtsMyHead]

CHF,

 

My go to energy drink is Monster in the blue (low carb can).  For the night attacks, I usually slam 1/2 a can (roughly 8 of the 16 oz).  I started with Monster because it was cheaper than the others when I started drinking it.  I don't remember any other research or consideration to prefer Monster.  It worked, so I didn't change.  At the time it tasted better than Red Bull.. ha ha..

 

J

[pro2see]

You guys are awesome. ThatHurtsMyHead, my night time snack is dark chocolate...mmmmmm Usually a dark chocolate mounds bar or these cosmic brownies my wife gets for my stepdaughter and myself. So now I'm off limits to the goodie cabinet haha. Last night I slept with my head more elevated (almost in an upright position) and it seemed to help. I woke up once with a mild stinging in the back of my eye. So I got up as I usually do to go to the front porch and get some fresh air, but by the time I got out there and set for a hit, it went away. However the exhausted feeling was still there and went right back to sleep. I do have a question, Do you ever have a day were your neck is tight all day and when you move certain ways you can feel the knot, or feel like your neck is sticking? You think you are going to get a hit but you don't? I have some other question and experiments to ask/tell you. I hope to get time this evening to sit down and type more.

 

oh, on a side note the only thing that Melatonin made go to sleep was my lil buddy. Just sayin.

[ThatHurtsMyHead]

Pro2See,

 

I had a suspicion your night time snack was one of the top triggers.  For me dark chocolate is a faster / worse trigger than regular chocolate.  You should start doing much better with the night attacks staying far away from any hint of chocolate.

 

What you describe of feeling like an attack is coming but never really arrives, many of us classify those as "Shadows".  Usually it's a bad 'feeling', but no pain.  Sometimes might have small sliver of pain, but nothing like a real CH attack.  Sometimes might be an ache in the neck (but no CH attack).  I think we all get them, but some describe them slightly different.  The common point is we 'feel' different and bad, but no CH attack.

 

Take a look at the trigger list, and try to cut out everything you can.  Maybe your first go around, don't cut out the bleached white flour and sugar as those are VERY difficult to avoid.  Once you establish a new attack baseline (hopefully significantly less) without the main triggers.  Then experiment with cutting out the bleached white flour.

 

Happy to hear you got some better sleep without the dark chocolate bedtime snack.  

 

J

[ThatHurtsMyHead]

Pro2See,

 

This post reminds me of the scoff I got from my doc wayyyyy back, when I told him I figured out Chocolate was triggering my afternoon attacks.  He said there was no way chocolate could trigger a headache, that they actually contain chemicals known to reduce headaches.  He acted like I was some Dumb A or something....  Didn't believe me for one second, and treated me almost with contempt for the rest of the visit...  

 

Sad, doctors for the most part don't really listen to their patients.

 

J

[pro2see]

I can't believe I had to give up my chocolate. lol ding dang headaches. Update since the last post. I had one pain free night since my last post. Did everything the same the next day but was hit with two daytime attacks and two zinger night time attacks. Still working on getting my oxygen but in the meantime I'm using other things from you guys and this site.

[CHfather]

pro2 -- Sorry you're still getting hit so bad; hoping you'll get the O2 soon and the other things (including D3, I hope) will kick in.

Have you tried the feet in very hot water in the bathtub thing for quelling/aborting attacks?  Some people swear by it.

[mit12]

Pro2see

Glad you found this place, there are so many good people on here that can help.

Using pen and paper to track your attacks along with what you eat every day will get you on track with triggers. Key things for me is sleep times and duration. I do have food triggers, shrimp is almost an immiadate attack same goes with champagne. If I have a little headache I need to stay away from cheese, Chinese food and all alcohol. Perfumes and other smells can trigger an instant attack. If you dont have a good pair of polorized sun glasses get a pair.

Busting along with the D3 progeam and Oxygen has kept me off all prescription meds.