Help understanding triggers

[CantBeWittyMyHeadHurts]

I'm a little confused about triggers but here's what I think I understand. CH cycles don't have triggers, you get them and once you start getting CH you have them for the rest of your life. You can do things to make cycles shorter, less severe, and less frequent but not go away permanently. When you're in a cycle, you have things (ie, gluten, alcohol, stress, extreme temps) that can trigger an attack but these things don't start the cycles and by eliminating them, you can't become CH free. Is this right? 

[spiny]

I would say that that is correct. Alcohol is a well known trigger while in cycle. Out of cycle most can drink. Not drinking while out of cycle will not prevent the next cycle unfortunately.

There are many things a person can do to reduce the frequency of hits or the severity of hits.

The one thing I would highly recommend is starting the D3 Regimen and staying on it year round. It can be found in the Clusterbuster Files part of the site. For some, it does prevent the cycle starting. Others get enough relief by doing it they take those vitamins.

Supposedly one can 'age out' of CH. I have never met such a fortunate person. But many doctors will still tell their patients this.

[CantBeWittyMyHeadHurts]

I am 3 weeks into the Vitamin D therapy and am please to say that my attacks have been getting less severe and less often. I have been having CH for 14 years but just recently was able to correctly diagnose them. I've been doing lots of researching and reading on this website. It's given me hope. This specific cycle has been hell is and has been vastly different from all of my other cycles. However, the Vitamin D has been amazing. 

The one side effect that I can't shake is the exhaustion during the day after attacks at night ( or in the morning). But at least it's not pain and I'm praying the cycle is close to being over and my life can go back to normal until the next cycle. 

Thanks so much for all the information on here! 

[CHfather]

Great to hear that the D3 is helping you so much, CBWMHH.  I don't recall what else you are using for your CH, but let's make sure that you have the full arsenal -- oxygen, first and foremost, if you don't have it now -- before your next cycle.

spiny's responses are, as usual, great.  Did you know that there's a list of possible triggers over at the ClusterBuster Files board, plus quite a few posts adding to the list?  https://clusterbusters.org/forums/topic/4568-triggers/

The idea of "triggers" is broader there than it is sometimes used.  Sometimes a trigger is considered to be something that immediately brings on an attack.  Alcohol is almost always like that.  The list I linked to also includes things that seem to be associated with attacks that might come on later, but not immediately, or that might result in more attacks or worse attacks. 

Regrading one of the things you listed -- some people seem to find that reducing gluten helps, but I wouldn't say it's a commonly recognized trigger, or a trigger that is common to a large proportion of people with CH.  I could be wrong about that.

 

[CantBeWittyMyHeadHurts]

I have looked into O2. Right now I'm putting that in my back pocket because of space, not having a PCP, and because my attacks seem to be getting more mild. But I'm going to have the setup before my next cycle starts.

At the moment, I take an Energy Shot at first sign, then an ice pack on my left eye until the intense pain is over, then try to get back to sleep. Since I've been on the Vitamin D3, most times the attacks only last an hour start to finish and hasn't reached more than an 8 on my pain scale. 

I'm trying to figure out if I'm doing anything that might be triggering attacks so I will definitely read your link on triggers. I've had CH for 14 years but my most recent cycle has been so different from the others. I'm staying on the Vitamin D3 forever now :-) 

I've been taking 20 mg of melatonin before bed. How long after my cycle ends should I stop doing that? Do people become dependent on it if they stay on it too long? 

Once again, I'm so thankful to have a place to go to ask my questions and you all are so fast with answering! It is such a peace of mind for me! 

[CantBeWittyMyHeadHurts]

Okay, I just read the link. I have read it before when researching triggers. How does one go about figuring out if something is triggering attacks if it doesn't happen right away?

I've been keeping a log of attacks but only duration, strength, what I used to helped during and shadows afterwards. Should I keep a food diary? What else would be helpful to log? 

[spiny]

Awesome that you have gotten great help from the D3. I stay on it year round too. It is good for you and you will already have your D3 in order for the next cycle that shows up.

It is hard to say how you will 'know' all the triggers. I personally have a few that are constant. Barometric pressure drops are a big one. Then you have alcohol, MSG, and overheating. With overheating I get a normal headache first and then comes the CH.

If it is a delayed response it will be harder to track. For food triggers I would suspect the only way is to document what you ate that last meal. If you had pizza, it could be the pepperoni or gluten. Say you have a grilled cheese the next day and get hit. Then it begins to sound like gluten to me. If you have bacon and get hit like with the pepperoni, then I would suspect nitrates. The issue there is that nitrates are turned into nitrites by your body as you digest them. It gets difficult as you can see. But keeping a diary will be a huge help.

Some react to scents as in perfume or solvents like paint thinner. Those will hit pretty quick like alcohol. Or that is my understanding.

While I am 'gluten intolerant', gluten does not give me a CH. Digestive issues - very much so. It is a process to track them all down. The ones that hit quickly are an issue for sure. Avoid them once you ID them.

I have seen many triggers mentioned. Some I would never suspect, but they appear to cause CH for some people. I think that if you track your major ones and eliminate them you have accomplished a lot. I would not be overly concerned about finding them all in a month or two.

ATB

[CantBeWittyMyHeadHurts]

My CH always show up either right after I go to sleep at night ( 10-12pm) or early in the morning ( 6 or 7 am). It doesn't seem to be linked to how much sleep I get or when I go to bed. Do all clusterheads have triggers or do some just get attacks without any known triggers? 

[CHfather]

If you're having your regular attacks and there isn't anything unexpected about them, you might not be having any external triggers, beyond whatever in it is internally, in the brain, that triggers CH attacks.  If things shift significantly, triggers are one possible source.

(I had a serious condition once, not CH but pancreatitis, that was triggered by MSG. It was actually caused by MSG, as opposed to being something I had normally that was sometimes brought on by MSG.  The attacks came several hours after I had eaten something with MSG in it.  Doctors had no idea that MSG could cause pancreatitis, so it took me a good (or bad) five years of occasional very painful attacks to figure out the MSG connection on my own.  That's why I'm a fan of knowing what possible triggers for CH might be.  As a side note, I'll mention that after my first attack, which was quite terrible, the ER doctor told me to only eat/drink clear liquids for a few days until it cleared up.  So of course I ate chicken soup.  Every time I ate it, I got a new attack, so I wound up living on Saltines and ginger ale for about five weeks, afraid to eat anything more substantial than that.  It wasn't until I discovered the MSG connection many years later that I realized why the chicken broth made things worse -- it was loaded with MSG.)

[MoxieGirl]

Hi,

My theory is that no two cluster heads are alike, and just as soon as you figure yours out, it'll change. 

I'm a chronic sufferer, but my clusters are very different from most. Alcohol is not a trigger for me, but KFC's Krushems are so cold they'll trigger an attack, as will sudden, strong smells or changes of temperature, etc. Also, to little stress. 

I have chronic daily headaches, chronic migraines and chronic cluster headaches. I would say a headache diary is vital to understanding your headaches. Through my diary (which I've kept daily for 7 years now) I learned that I cannot stay up late more than 2 nights in a row unless I want to be body slammed later with migraines and clusters. 

I used to track what I ate & drank, my exercise, sleep, headaches and all painkillers and preventative meds I took. After a couple years I cut that back, and I now just track all my headaches and the meds I take to stop them. But, tracking this stuff showed me Topiramate was making things worse, and I can show that Magic Mushrooms and RC Seeds drastically improved my clusters. 

MG

[CantBeWittyMyHeadHurts]

Thanks so much CHFather, MoxieGirl, and Spiny for your replies! Since I'm new to the CH diagnosis it's such a huge amount of info and tons of questions come up during my research. I appreciate the time you all have taken to answer my questions. Again, I can't stress enough how thankful I am for this website. 

[Bejeeber]

I guess you could say sleep is an extremely common trigger, maybe number one. 

From my personal experience and what I've seen others mention, I'd say alcohol is way up there too.

I still tend to believe that some can age out of CH, especially after having seen an extensive long running survey (Scandinavian I think) years ago, where this was tracked and "confirmed", but how many of those who have aged out and haven't had a cycle for at least a decade are likely to seek out an online message board to discuss it? So far I think it's been zero. Actually I guess you never really know you've 100% aged out for sure until you're dead, right!!?? 

In the highly anecdotal realm I did meet a retired law enforcement officer CH'er, 60+ years of age, who was planning to bust with psilocybin if another cycle were to ever hit, but it had been 10 years since his last cycle and he felt there was a strong chance he had aged out.

 

 

[xxx]

Hey Can't Be Witty.

Good on you for starting the anti-inflammatory regimen... and thanks for the feedback.  Are you taking the 2-Week vitamin D3 loading schedule plus all the co-nutrients?  After 6 years working with CHers taking this regimen to prevent their CH, the 2-Week vitamin D3 loading schedule is the fastest way to a pain free response... 

The latest data from the online survey of CHers taking this regimen as of March 2017, indicate a mean response time of 10 days for both episodic and chronic CHers.  Accordingly, if you haven't experienced a significant reduction in the frequency of your CH by day 10, start the week to 10 day course of Benadryl (Diphenhydramine HCL) at 25 mg/day...  (Significant = Reduction in CH from an average of 3 CH/day down to 3 CH/week).  I've found the Children's Liquid Benadryl works just as well as the tablet form at a much lower dose.

Take Care,

V/R, Batch

[Xs1348]

To me, being on melatonin (3mg) daily and 6mg before flare up (which i know is in August) and 20mg of baclofen daily snd 100mg of Riboflavin daily has worked so far. But i guess melatonin is the major one.

[CantBeWittyMyHeadHurts]

Hey Batch! I did not take the loading dose because I read that if you do that, being under a doctors care (and getting a blood test) were recommended to keep an eye on levels. I don't have a regular doctor and all the headache clinics in my area were full for months. So I just played it safe and took the regiment. It did seem to take two weeks but after that my attacks decreased in intensity slowly. I'm happy to say that I've been headache free for 11 days and counting! Pretty sure I am done with that cycle. I will continue with the Vitamin regiment and see what it does to my next cycle. I also stopped taking Melatonin and haven't had any flare-ups from that. I am still having slight shadows but I just chew a big piece of ginger (as recommended on here) and it leaves. I'm almost euphoric as I go through my day without an attack looming over me! 

[ClusterCured]

Hi Cantbewitty,

I'm probably going to be the first to tell you that clusters can absolutely be cured.

As I have said in previous posts, I suffered for years with clusters and intense debilitating pain. I went to three neurologists who prescribed me Imitrex, Percocet, and Oxygen, but told me they could not figure out this problem.

Iwas so sick of the constant pain holding up my life, I did something drastic. I stopped eating all processed foods, meat, and dairy. My diet is fruit, vegetables, beans and rice. All I drink is tea and water. It was like a miracle. In two days they were gone, and during the summer, the worst time of year for my clusters. They've been gone for two months, and I have my life back. 

My mom had chronic migraines also. She changed up her diet. Gone. She was so upset she didn't try this when she was younger. No meds. No doctors. Are you ready to live again? I 

[CHfather]

ClusterCured, thank you for your posts.  Your enthusiasm is appropriate and understandable.  I hope others will try what you are suggesting and we can learn from their experiences whether you have in fact discovered a cure.  Wouldn't that be wonderful!  The only way to know is for people to try and report back to us.  My only caution is that you are in fact not the first, or the second, or even the third person to have presented a dietary "cure" here, and there are more than a few people at this site who already eat in the same way as the "cure" you describe, without the same success you have enjoyed.  One dietary "cure" set forward very strongly was a low-histamine diet.  Yours might or might not be that, depending on what specific fruits, vegetables, rice, and tea you are eating (some of all of those are low in histamines, some are high). 

Since you don't seem to be selling a product or procedure, I assume that your enthusiasm is genuine.  It would be quite wonderful if "simply" (I know it's actually far from simple) dropping processed foods, meat, and dairy was the way to a cure.  I look forward to input from others who try what you are urging.

 

[ClusterCured]

2 hours ago, CHfather said:

ClusterCured, thank you for your posts.  Your enthusiasm is appropriate and understandable.  I hope others will try what you are suggesting and we can learn from their experiences whether you have in fact discovered a cure.  Wouldn't that be wonderful!  The only way to know is for people to try and report back to us.  My only caution is that you are in fact not the first, or the second, or even the third person to have presented a dietary "cure" here, and there are more than a few people at this site who already eat in the same way as the "cure" you describe, without the same success you have enjoyed.  One dietary "cure" set forward very strongly was a low-histamine diet.  Yours might or might not be that, depending on what specific fruits, vegetables, rice, and tea you are eating (some of all of those are low in histamines, some are high). 

Since you don't seem to be selling a product or procedure, I assume that your enthusiasm is genuine.  It would be quite wonderful if "simply" (I know it's actually far from simple) dropping processed foods, meat, and dairy was the way to a cure.  I look forward to input from others who try what you are urging.

 

Thanks so much for your comments, CHfather.

I wish others would try this as well and post. Also, I'm not trying to sell anything, although I've spent a lot of money on products based on pain reduction, and products related to treating these cluster headaches. The shock for me was the speed the diet change worked. Normally, regardless of what I ate, I would get clusters between 7pm-10pm in the evening, especially during the summer, and they would last for an average of 3 hours.

My exact new diet:

I started off with a morning breakfast smoothie:

1 banana, two cups of mixed salad greens, 5 strawberries, 3 celery stalks, chia seeds, 2 cups of water. Blend and drink.

I also started taking a couple supplements in the morning: Non-flush Niacin, Vitamin C, Multi-vitamin, B-12.

Lunch is salad: Bowl of salad greens, 1 whole tomato, handful of red onions, 1 avocado, vegan salad dressing (Only way to get dressing without processed chemicals.) I add about a cup of white rice and black beans on the side.

Dinner is where I play around with different ingredients, but I specifically stay away from dairy, meat, and processed foods.

Creamy Potato soup: Potatoes, celery, onions, garlic, and carrots. In a pot sauté until celery is clear. Add vegetable broth until covered. Boil for 20-30 minutes. Take half of the soup out of the pot and blend. Add blended portion back to soup. Delicious!

I drink green caffeinated tea, sometimes black coffee, and water only. No more sodas or carbonated beverages.

It's been wonderful to come home and not have to worry about the pain creeping in, so happy! I hope my posts can help others with their pain.