Diet and Clusters

[ClusterCured]

Hi Everyone,

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.

I was 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? 

Why is there not more research on the link between diet and clusters?

Medications have side effects and are expensive. Can we get some research on diets linked to clusters and diet that cures it?

[jon019]

2 hours ago, ClusterCured said:

Hi Everyone,

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

No....sigh...you're not...so please allow me to "fix" that fur ya: ABSOLUTELY!

"I'm probably not going to be the first to tell you that I have found something that works for ME...it's diet...it's this diet....whadda ya think?"

[jon019]

Diet?....good discussion topic. And actually... there have been reams of study and multiple publications and books re diet... which show successful management of migraine.. for some...based on diet modification....either minimal or drastic. 

Talk to a bunch of clusterheads and you will hear about 'triggers" from certain foods and food groups....for myself: alcohol, aspartame, msg, and other high glutamic acid containing foods have all been problematic. Over 35 years I've learned what to avoid...depending on where I was in cycle. Alas, massive changes in diet proved fruitless...YMMV...........

There is some correlation between migraine and CH....most if not all of the meds used for CH were actually developed for migraine.  (excepting oxygen...which seems only beneficial for clusterheads v migraineurs. Have you tried?) Though one must be FULLY cognizant that they are completely different ailments...coincidental...partly... to the head.

There isn't a single person on this list...or other lists... that don't yearn for more research on ALL aspects of CH. So far our relatively small numbers and therefore minimal economic incentive impact have stunted that. It seems to be getting better...based in no small part by the founders of this here site we are on!

Best

Jon

[ClusterCured]

Thank you for your comments, Jon019. I do get a little carried away especially after suffering for so long and finally finding what works for me. I really want others to try this and see how effective it is. It's felt like an uphill battle for years with these headaches, and I know I was willing to try anything to get them to stop. Changing the way I ate was a huge adjustment, but the shocker was how quickly it worked. I would have expected it to take much longer of a diet adjustment to effect the clusters, but they were completely gone after two days. I'm normally a very anxious person and work in a very stressful work environment. I've had some major stresses, but nothing has brought back even a slight headache in two months. You'd never believe the amount of work I get done, and how clean my house is now that I'm not crumpled up in bed with pain. My mom has also had a complete breakthrough with her migraines. Will someone else please try it and post?

[Ricardo]

The only time I tried this type of diet my clusters came out in full force.

 I agree that if you are allergic to certain foods it will make your clusters or migraines worse, and there is a little evidence that some migraines could be connected to food allergies but as of right now there is very little evidence to connect diet with cluster headache.  Over the years I have heard a lot of people go on different diets but very few of these people ever seem to get long term success.  There have been a number of people who have thought the diet they were on was working, only to find out what really happened was that the clusters went into remission.  I hope this is not the case for you, but I hope you can understand that sometimes chronic cluster headache goes into remission and many times people can not figure out why.  Maybe the diet you went on stopped the clusters completely, maybe you went into an unrelated remission, maybe food allergies changed you from a chronic to an episodic sufferer.  Unfortunately at this point there is no way to tell and 3 months of no headache does not necessarily mean that you are "cured".  I hope so, but it could just be that you are in remission.    Keep us updated as time goes on.

-Ricardo

[Rainmaker]

https://clusterbusters.org/forums/profile/24003-clustercured/

Did your headaches stay away over time?  Can you please update us?  

[ClusterCured]

Hi Rainmaker, I’m extremely happy to say that my clusters have been gone for years now. Around Thanksgiving, I overindulged a bit and had a small migraine, but nothing two Aspirins couldn’t help. I haven’t had a massive episode since my diet adjustment. No meats, no dairy, no processed foods, and no added sugars in my regular diet. I got so much better at cooking and found great recipes online that work for me. I work two jobs now, full time and one part-time, and also I’m taking college classes. It’s a lot of work, but I’m living without pain and feeling great. I hope everyone out there takes steps to find what works for them because I truly believe what you eat is the key. Thanks so much for checking back with me. 

[MaxHead]

I'm happy to hear that has worked for you so far and I hope it continues. I have gone a similar clean eating nutrition route. Also, in September 2018 I even went all-in on intermittent fasting (no eating for 12-16 hours, then I eat a normal amount of calories in remaining hours). I lost 32 pounds in 14 months. We even experimented by reintroducing some foods back into my diet short term to see if they would trigger CH. Anything to isolate the beast.

Bottom line... My weight went down, my blood panel numbers (including micronutrients) improved dramatically across the board, and my energy went up. Unfortunately, I also went from episodic to chronic CH during that time. I feel better but can do less because of my debilitating CH condition. I had a seven-day stretch in early November when I had only four attacks. I thought for sure I was headed back into remission. That was followed by seven days with 35 attacks. There were no changes in nutrition, sleep or anything except some youthful optimism at the beginning of the second week. At least for me, CH is definitively not nutrition-related.

 

[dmlonghorn]

On 1/7/2020 at 7:44 PM, MaxHead said:

At least for me, CH is definitively not nutrition-related.

Kudos on the lifestyle change!

In 2018 I ditched alcohol, gluten, dairy and meat. I'm living in the best physical condition of my life and the Beast is still there, always there.

[drewbie]

It's probably worth mentioning that a ketogenic diet has shown some very promising results for cluster headache. The keto diet is more than just a diet, though, as it fundamentally shifts your body's biological functioning.

I'd have thought that just eliminating certain food groups is something that's going to be a very individual thing - sure, it's going to work for some people but it's unlikely to be a consistently replicable approach.

I do find it more believable, however, that shifting one's body into ketosis could be helpful for a greater chunk of sufferers. The success of keto for other neurological disease and the anti-inflammatory properties of ketosis do have relevance. It's clear there's nothing that works for 100% of sufferers, but I think keto is worth a try as a natural option. It has shown promise in clinical trials and there's plenty of decent anecdotal evidence too. 

My understanding is that going keto alongside the d3 regimen may be a valuable combination too.

[Chris Moore]

I'm doing Keto and Vitamin D3 regimen. I've done Vitamin D3 regimen many, many times in the past. My cycles are normally 7 weeks. Right now I'm on week 9 (pretty odd for me). 

The first six weeks were a straight up walk in the park. If I felt a shadow, I would take two advil and a ginger capsule, lay down for 5 minutes and feel completely normal. By week 7 I was having to hit the oxygen. Now my days feel pretty standard compared to past cycles. I've been getting terrible attacks every other day, or every two days, and have lots of shadowing and "electricity" feelings around my eye and cheek bone most of the time.

For the first six weeks I was saying "Wow. Keto plus D3 regimen is my silver bullet!" Now I'm wondering if it has made my cycle longer. But, ultimately I am grateful for the walk-in-the-park first six weeks and do ultimately believe it has been very helpful. 

[Rush]

Sounds very similar to what I am going through.. my cycles are normally 6-8 weeks, I am now on week 11... the first 5 weeks were much milder than normal, then they ramped up in intensity.. mine cycles "used" to start out full throttle.

This cycle started on 12-9-2020, so I did a full loading dose of 50 k D3 a day for 8 days, then brought it down to 15k for a month, then back to 10k.. I was wondering if that loading dose was what kept the start of the cycle mild in intensity... also wonder if it prolonged my cycle (terrified of going chronic)..

I wish someone would come up with an at home self test kit for the D3 / Calcium, so I would know if I could extent the loading time.

Sorry for rambling Chris, was mainly going to ask you how long the cycle ended up lasting???? Please say you are not still in cycle!

Randy

Edited February 24, 2021 by Rush

[Chris Moore]

Hi Rush! I ended up going the busting route to try and end this never/ending cycle! I’m using RC Seeds (you can see a very very detailed log im doing in the “share your busting” forum). I’m pretty sure this cycle has been busted, or is at least 98% of the way there! 
 

I actually just ate a giant bowl of cereal LOL. I decided tonight “I am so damn sick of this keto diet! I am going to eat a bunch of carbs and see if I get an attack!” Since I feel pretty confident the cycle is done/busted, I thought I’d try ending the keto diet. Hopefully I stay pain free! 
 

And yes, your cycle sounds just like mine! 

[Rush]

I have thought a lot about busting, but it's been so long since I have had a full blown panic attack I am to paranoid to try ... ( have often wondered if my little trips in the seventies caused these damn CH's in the first place lol :]..

I can just see me having a panic attack "while" I am having a CH ! .. makes you wonder how much a person can take arghhh..

Wish you luck with it, sounds like on the downside

Take Care!!

[Bejeeber]

Hi Rush. Concerned about panic attacks during a bust? I think everyone here knows exactly what rant I'm about embark upon once again - I'll try to keep it semi-condensed this time:

Valium (or Xanax) can prevent those, and it isn't known to mess with the therapeutic aspects of the busting substance. Personally I think of it as insurance against a bad trip, and never leave home bust without it. OK I did try San Pedro Cactus powder for one bust and felt zero anxiety that time, so I skipped the benzo, but for vitamin M or vitamin L I find good old fashioned valium to be the shiznit (many others have reported the same, and it has also long been used in ER rooms for those admitted with bad trips).

[Rush]

I will have to remember that.. in the past I didn't even consider busting, but this cycle that (I think is just winding down) was a real test on sanity. The panic attacks I used to get pretty much kept me from even looking into it, but if I have a life preserver (and I do have Xanax for when I do run into anxiety), it would make it way less stressful.. so between now and my next cycle I think I may start "educating" myself in case I decide to take the plunge!

Thanks Bejeeber!

 

[LoriMom]

On 8/15/2017 at 10:18 AM, ClusterCured said:

Hi Everyone,

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.

I was 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? 

Why is there not more research on the link between diet and clusters?

Medications have side effects and are expensive. Can we get some research on diets linked to clusters and diet that cures it?

Hi, Can you tell me what kind of tea you drink? Does it have caffeine?  I've been getting these CH's for 46 years now and never drank coffee until about 8 years ago. So I don't think it's caffeine that triggers them or intensifies the pain. Since 2012 the only thing I have found to work is 2 aspirin and 2 sudefederines (the 4-6 hour dosage generic brand). It usually works about 90% of the time in about 20-30 minutes, then I can go on with my life instead of 4-6 hours of excruciating pain and all the side effects and cost of the drugs everyone mentions as well as oxygen.  

Sooo happy you found your cure!

LoriMom

[Piyush Jain]

I was a cluster head and I might have had a good experience with diet changes (can't say for sure because I didn't change my diet for curing cluster headaches and so didn't log any exact timelines).

I was a vegetarian since childhood (but dairy heavy: milk, butter, and cheese). In 2021, I was in Seattle and had experienced episodic clusters multiple times over ~5 years before 2021. I wanted to turn vegan for personal reasons. I couldn't stop dairy immediately since it was a major part of my diet, but had started toning down slightly from what I remember. I did get my clusters in the fall of 2021 (more or less if I remember the timing right). 

In 2022, I almost stopped dairy completely and then I didn't get clusters for 2 years. I got them again in January 2024, but that was because of travel which resulted in a 12.5 hour timezone change and that really messes with the sleep cycles for weeks. But I must say that this was a much better season. There were some setbacks surely but I didn't have to cancel the various commitments/events that I had signed up for during the 1.5 month travel. My food, water, place were changing every week, sometimes multiple times in a week. And I was also doing my job with all this. There were much more external stressors during the month long cluster season with travel than my usual days, but things worked out well.

I don't know if my clusters are gone, or are in remission, but I do feel healthier and am doing multiple things (by choice) at the same time in my life. If clusters come again, I am much less worried than before. And I have a feeling that they won't come back (but that is just a feeling I have had for these 2 years based on experience and mental state of mind).

 

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I'm normally a very anxious person and work in a very stressful work environment. I've had some major stresses, but nothing has brought back even a slight headache in two months. You'd never believe the amount of work I get done

@ClusterCured +100 -- this is my story too.