This helped me- hopefully will help others

[ClusterSwarm]

First off I want to say that I want to thank you all. For years I’ve been trolling your forum and I have used so many of your tips  and methods. Thank you 

I think it would be best to start out with how we got here so stick with my. Btw I’m no writer so please don’t be to hard on me. 

Im 40 years old and I have suffered with clusters since I was 14-15 years old. My family sent me to the best doctors money could buy. All the medical industry could offer me was drugs. I’m sure all of you know the story with primary care physicians . 

Truth be told I’ve tried everything. When I say that I mean it. I’ve eaten or injected so much meds and drugs that about ten years ago it started to ware on my health. Then I found forums and found oxygen. The oxygen saved my life literally. I get emotional just thinking about it . 

After years of trial and error with food and vitamins I saw on one of your forums some people were using Benadryl. You guys No the drill as soon as you see another would be cure of course the first thing you do is stop at the store pick it up and take it that night as soon as the monster comes. This was about two years ago.

 One thing I want to say is that I am no doctor I’m a mechanic. Once I read that people were using Benadryl and getting some relief I started to really dig deep into histamines and the more I read about it the more I realize that some foods and some drinks are toxic. Not toxic in a way that you eat it or drink it and you immediately get sick but toxic in a way that overtime you could have an adverse effect on your health. 

 So I did a search and I studied for weeks what foods contain histamines that are bad for humans and any of you can do a simple search and find the same and one of the main things that I used to use to help with the pain from my cluster especially the day after was coffee or tea. As soon as I cut out Coffee And tea ie caffeine With a full list of histamine rich foods like sausage sandwich meat and things of that nature I noticed an immediate difference I was beginning a cluster cycle and normally my cycles are from 1 1/2 to 3 months I was into my first week and after about 5 to 7 days my cluster is faded away.

 Please don’t get me wrong I’m in no way saying that this will work for everyone all I can tell you is I haven’t had a break since I was about 15 years old and now I’ve gone for almost 2 1/2 years with no problem .

When you try what I did don’t be tempted after a couple days to give up and go straight back because your headaches don’t go away right away things that are toxic in your bloodstream take some time to get out so give it a week or two what if you got to lose.

I really hope this helps somebody because cluster headaches are no joke I can’t tell you how many times I thought about ending my life. Thanks for listening 

 

[Freud]

Unfortunately many people have posted about diets here. Be it keto diets or histamine free diets, some have said it helped them. However, some times it’s just coincidence. Spontaneous remissions do happen to episodic and chronics. It’s rare, but I am skeptical. Like Dana says it’s no cure but may have been a trigger for you. We all have different triggers. If you want to see how many people found a cure only to find out it wasn’t search  in the search field for “cure”. Start with the oldest post and read to current. There are over 25 pages of cures. I hope to god you never get another CH. but please don’t use the word cure here. Thank you for sharing hopefully it helps someone else. 

[dmlonghorn]

I've been on a paleo "diet" for almost a year. I did this to combat the "early stages" of Rhuematoid Arthritis (RA). I just visited my rheumatologist who confirmed my blood no longer has enough inflammation in my body to show up as being positive RA. My first thought was "Eff you a$$hole, why didn't YOU suggest changing my diet?" Thanks to my wife's diligence, we took control of my care. This quack outlined a treatment plan that included a lifetime of methotrexate.

Excuse the rant, I still have clusters.

 

[Freud]

That’s amazing the diet helped the RA. Both my sister and father suffer from bad RA. We will have to talk about this in Dallas!  Sorry it didn’t help the CH 

Edited July 11, 2019 by Freud

[ClusterSwarm]

Thanks for responding. 

I can tell you one of the things I read that woke me up was that people and domesticated animals ie dogs cats ect are the most likely to develop these crazy illnesses. Animals living in there own natural habitat aren’t waking up and drinking the boiled off juice of some plant you can’t eat raw. They drink water.  I think if you stick with food that primates are meant to eat and try your best to stay away from refined “ man made” food your overall health will improve and you might shake the torture of clusters. Start with the coffee and tea. For a bonus dump the sugar. 

Side note. Be prepared to feel like absolute crap for about five days of no caffeine. It will pass but it’s baaaaad in the beginning. 

 

[ClusterSwarm]

Thanks for responding. 

I can tell you one of the things I read that woke me up was that people and domesticated animals ie dogs cats ect are the most likely to develop these crazy illnesses. Animals living in there own natural habitat aren’t waking up and drinking the boiled off juice of some plant you can’t eat raw. They drink water.  I think if you stick with food that primates are meant to eat and try your best to stay away from refined “ man made” food your overall health will improve and you might shake the torture of clusters. Start with the coffee and tea. For a bonus dump the sugar. 

Side note. Be prepared to feel like absolute crap for about five days of no caffeine. It will pass but it’s baaaaad in the beginning. 

 

[dmlonghorn]

12 hours ago, Freud said:

We will have to talk about this in Dallas!

Indeed! 

[ClusterSwarm]

1 hour ago, Brain on fire said:

If it works for you, good for you. Thanks for sharing it may help someone else. Just my rambling thoughts. We have evolved, we are not Paleolithic beings. For centuries our bodies & those of our ancestors have been exposed to items in our diets, environments. Many are now a part of our genetics. Do we now de-evolve for centuries in isolation to un-do?

If it helped us get rid of clusters I’m sure many people in here would eat mixed feces. I see your point but that doesn’t mean that the way we eat now opposed to then is better for us. We have become unnatural. 

[MoxieGirl]

Moxie Girl's first rule of clusters: No two clusterheads suffer the same, and as soon as you figure yours out, it changes. 

I certainly agree that our diets have a lot to answer for. The absolute rubbish that goes into some of our foods, the manufacturers should be in jail! 

Everything is worth a try. Like you say, everyone is different and what works for one person won't for another. But I shy away from the word 'cure' when it comes to clusters. I know people with 4 and 5 year period of remissions, and even longer. Come back to us in 10 years, if you're still pain free all that time, we'll be impressed. 

Mox

[SHG]

If it was all about histamine than anti-histamines would have helped. It's interesting to point, though, that some histamine rich food (such as fermented and cured foods) are also rich in tyramine, which is a suspected trigger for migraines and CH. 

[ClusterSwarm]

On 7/11/2019 at 12:21 PM, Brain on fire said:

If it works for you, good for you. Thanks for sharing it may help someone else. Just my rambling thoughts. We have evolved, we are not Paleolithic beings. For centuries our bodies & those of our ancestors have been exposed to items in our diets, environments. Many are now a part of our genetics. Do we now de-evolve for centuries in isolation to un-do?

The thing that got me thinking was how many people had positive results from Benadryl. Why would a histamine blocker stop a headache?

[ClusterSwarm]

The thing that got me thinking was how many people had positive results from Benadryl. Why would a histamine blocker stop a headache?

[SHG]

Benadryl (Diphenhydramine) is far more that just an anti-histamine. It also binds to some serotonin, dopamine and adrenaline receptors, all of which are connected to CH. 

For some people, an allergic reaction might trigger a attacks, for several reasons. So, antihistamines might be somewhat beneficial, but only as an addition to a more proper treatment. 

[ClusterSwarm]

So what makes the most sense is that us “cluster heads”are allergic to something? 

[ClusterSwarm]

“Proper treatment” I’ve been to some of the best docs in the country and they have no clue what to do about clusters. All they can do is load you up with pain meds. 

[SHG]

ClusterSwarm, I'm a CH sufferer for 36 years now, during which I've done some reading. So let me save you a lot of time.

(a) CH is not an allergy, histamine is not the cause for CH, and your body also produces histamine without being allergic. Histamine is not only a marker of allergy but also an inflammatory agent, just like CGRP, Substance P and other molecules involved in the mechanism behind CH.

(b) If the doctors you went to did not know what to do with CH, they were clearly not headache specialists. Actually, if somebody gives you painkillers for CH, he certainly ISN'T a headache specialist. First line for CH is Highflow O2 and Imitrex as abortives; Verapamil as prophylactic; and a steroid taper as transitional therapy. Pain killers are a waste of time.

 

[ClusterSwarm]

There’s more than a few people out there that disagree with you. The treatments you have outlined I have tried for years. The only thing that helps is oxygen and histamine blockers. Don’t draw your line in the sand with doctors. Think outside the box. This is a savage illness. 

[SHG]

Tell me, wasn't that a doctor who diagnosed you? And if you don't trust doctors how come you trust the diagnosis? 
 

[ClusterSwarm]

I think you missed the point.  Everyone is waiting for this magical cure to come from some doctor. I suffered since I was a kid and I can tell you this not much is changed. All you have now that you didn’t have that as a few more chemicals and people are out there still suffering. 

[SHG]

Benadryl is a chemical too. Triptamines - including LSD, imitrex, melatonin and serotonin - are all chemicals. 
And hey, I'm as thrilled about using medications as you are. But in some cases it's better than the alternatives. 

The important thing is that you found something that is working for you. 

[Freud]

2 hours ago, ClusterSwarm said:

Don’t draw your line in the sand with doctors. Think outside the box. This is a savage illness. 

This is not outside the box thinking it’s just damn wrong. As Bostonheadachedoc will tell you opiates have no role in CH. Cambia a NSAID is a pain killer of sorts but a potent anti inflammatory has stopped a few of my CH but other NSAIDs do not and opiates don’t do shit. It is not standard of care. And any headache doc I’ve seen, even the poor local one knows opiates have no role in any of the TACs. 

[ClusterSwarm]

What’s “damn wrong” you lost me 

[Freud]

Opiates is not outside the box, it’s outside of standards of Pratice. Any decent headache specialist should know that or neuro or any doctor that takes the time to look up how to help their pt w a rare condition. 

[ClusterSwarm]

I wouldn’t touch opiates with a ten foot pole! Sorry if I came across and sounded like an advocate. I’m saying we need to start thinking outside the box when it come to alternative methods and or diets to gain some ground on this monster. 

[ClusterSwarm]

“

low histamine diet worked for me too! I just passed through my third cluster without a headache. Few people outside our “community” know what a huge deal that last sentence is. It sounds like others have tried it without success but I would encourage people to give it a try. It’s been amazing for me. I’ve had regular spring/fall clusters for the past25 years (with occasional smaller clusters in between). About 1 ½ years ago a naturopath suggested that I try a low histamine diet. I went on it about a month before I usually enter my spring cluster and stayed on it for the duration. Not one headache. I could definitely sense that things were going on and I had a few shadows but it never tipped over the edge. After that I went back to a normal diet until the fall. Then I did the same thing with the same results. This spring I didn’t start the diet until I felt that I was about to enter a cluster and that worked OK. I was a little less strict this spring and did have to bust out the O2 once but I probably would have been OK without it. My level of understanding of the physiology of it isn’t that great but this is my general understanding. Our body makes histamines in response to allergens (and for other reasons). Foods contain them as well. If we avoid foods that contain lots of it we can lower our overall histamine levels. Then, when we’re in a cluster and our hypothalamus misfires and causes histamines to kick out and dilate our blood vessels and cause us horrendous pain, there’s simply not enough histamines to do the normal damage. I’m sure those of you more knowledgeable will tear that up. The overall histamine level is also why the traditional food-journal never helped me. There’s not one trigger. The orange you ate before you got a headache wasn’t necessarily the cause. The ham and Swiss you ate earlier was just as guilty. The food list is pretty long, and there are lots of variations of it out there. It’s a really annoying diet but totally worth it. Interestingly, I went to see the naturopath only after I had inadvertently put myself on a high-histamine diet. Typically my spring/fall clusters last 1-2 months but I was in one that had been going on for 4+ months and was worse than any I’d ever had. With my tools (O2, verapamil and imitrex) no longer being enough and me having a hard time getting an appointment with my neurologist I went to see a naturopath who I knew (who wasn’t familiar with cluster headaches but did some research and came up with an amazing shot in the dark). My inadvertent high-histamine diet was an anti-inflamatory, low-pH diet that I was trying. It turns out that my daily apple-cider vinegar tonics and pineapple/spinach smoothies were just about the worst things I could have done.”

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