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Cluster Headache Help and Support >> Cluster Headache Specific >> How I stopped getting cluster headaches
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Message started by Slav on Nov 18th, 2015 at 1:12am

Title: How I stopped getting cluster headaches
Post by Slav on Nov 18th, 2015 at 1:12am
After about 6 years of cluster headaches almost every day, I now no longer get them.

This post is a few years (5 yrs) overdue, and for that, I am sorry. Also I live in Russia. I do not know about the laws in everybody else’s countries, and this information is for educational purposes only.

I have a lot to say, so sorry if my text is hard to follow.
Some of the details in this post might disturb some, but the truth is important.

1) Some background info first, feel free to skip to the other sections:

I started getting cluster headaches when I was 13. Specifically, when I started drinking a lot of artificial sweeteners (sugar alcohols). My mom was on a diet, and it was the only sweetener in the house. I did not know any better. At the same time, I was starting smoking cigarettes and cannabis regularly. I was also masturbating frequently (am a male). I would drink alcohol somewhat frequently as well. My sleep schedule was very irregular, and I had a poor diet. I went to sleep and woke up at various times, always different times, and I would mostly eat microwaveable food.

Doctors could not help me much other than prescribe oxygen, which was not very practical.

2) Here is what I found out (sorry, I don’t know how to format it very well):

DURING THE PERIOD WHEN I WAS GETTING CLUSTER HEADACHES:

Most important: Sugar alcohols ALWAYS trigger a cluster headache. Read all labels of EVERYTHING you even TOUCH. Sucralose, aspartame, neotame, saccharine, and many, many more, are alcohol sugars. They can be found in many foods, and even in MOUTH WASH AND TOOTHPASTE, AND GUM. They are man made and synthetic. Read the label, avoid any and all alcohol sugars. I used to get cluster headaches within 30-60 minutes of brushing my teeth in the morning, it made me miserable at school. I now use fluoride toothpaste that does not have sugar alcohols.

Excessive cigarette and cannabis smoking ALWAYS triggered a cluster headache. Don’t overdo it, or better yet don’t do it at all.

Alcohol ALWAYS triggered a cluster headache. Better to avoid.

Excessive masturbation ALWAYS triggered a cluster headache. Save it for your significant other, you’ll both be happier.

Sleeping in in the morning ALWAYS triggered a cluster headache. If I woke up from an alarm clock then went back to sleep (due to being tired from going to sleep late), I would wake up a couple hours later due to a cluster headache.

Not eating breakfast ALWAYS triggered a cluster headache. A big healthy breakfast is the most important meal of the day. Skipping meals and being hungry also usually triggered a cluster headache, though not as often as skipping breakfast. As always, read the labels of anything you put in your mouth, don’t consume sugar alcohols.

This is all I can think of in terms of triggers.

3) How I would abort a cluster headache.

Most often used: STRONG coffee, or espresso, LOTS OF IT. Energy drinks didn’t help much. Strong coffee with LOTS of caffeine worked better and is more natural. I would drink two liters sometimes of some very strong bitter coffee, without any sugar and especially without sugar substitute. The headache would go away after about 250mL, but I would keep drinking it anyway just to make sure.

Sometimes if the headache was not very strong, tilting my head till it touched my shoulder helped relieve the pain until I stopped touching my shoulder with it. My headaches were on the right side, and I would touch the right shoulder by bending at the neck.

Sometimes sitting in the fetal position on some kind of step (such that buttocks is ~10cm higher than feet), with my head bent and touching the right shoulder, also made the headache go away until I stood up. This position proved to be useful when trying to sleep during an attack, as it worked even when laying down sideways.

Sometimes extreme hyperventilation helped.


Sometimes, if I had not masturbated that day, masturbation helped. Sometimes it would abort the headache for just a little bit, sometimes for the rest of the day. I found out that for some reason, for me, it was not always an orgasm that made it go away. I would just pleasure myself without orgasm until the headache went away, as sometimes, as previously noted, excessive orgasms were a trigger.

Sometimes if I knew that I would have a lot of headaches on a certain day, I would consume a SMALL amount of psilocybin mushrooms. They grow in the forest here. I would eat just a small amount, and I would not hallucinate. They take a while to kick in, sometimes I would just chew them up and keep them in my mouth. It usually helped, but the headache would return if I spit them out. I sometimes used these by eating them in small amounts, which stopped headaches for the day. It is easy to slightly over do it though, and so I do not recommend this. Psilocybin and LSD for affect serotonin in some way, which I guess affects cluster headaches in some way.

4) what I changed in my life, which lead to cessation of cluster headaches:

MOST IMPORTANT: I started reading labels of everything. If it had ANY sugar alcohol in it, I would avoid it. I completely stopped coming in contact with the stuff, as it ALWAYS triggered me. READ THE LABEL, the stuff is EVERYWHERE, including toothpaste, gum, mouth wash, and breath mints.

I started going to sleep and waking up around the same time every day.

I started the day by eating a very large, balanced breakfast, and drinking strong coffee with it. I also started to actually eat as soon as I felt hunger. Not a glutton, but feeding your natural hunger is important.

I stopped drinking alcohol, smoking cigarettes and cannabis.

I stopped excessively masturbating.

5) my life now:
I have been avoiding sugar alcohols for a few years now, and have not been having cluster headaches. I rarely get them now.

Relapsed on smoking, and smoke about a pack a day.

I still wake up and go to sleep around the same time every day, with the exception of weekends, when, due to my job, I stay up very late and wake up very late.

I still do not smoke cannabis.

I can drink anyone under the table, and still do so every now and then.

I rarely excessively masturbate.

I still do not sleep in. If I wake up, I wake up and get out of bed fast, so that I may go and make a large breakfast with coffee.

I still do not ignore my hunger.

AT THIS POINT, I NOW RARELY, IF EVER, GET CLUSTER HEADACHES. I usually feel just a tiny bit cluster headachey if I let myself stay hungry for a while. If I have to be hungry and cannot eat for whatever reason, and feel a headache coming, I drink a cup or two of coffee without sweetener. It delays/stops the feeling until I eat a proper meal.


6) CONCLUSION:

Sugar alcohols seem to be the biggest trigger. Studies show that cluster headache sufferers have an abnormality in the hypothalamus (potentially due to scaring due to sugar alcohol consumption…), and the hypothalamus is like the brains bioclock. Things like hunger, sleep, orgasm, etc. are all things that affect the hypothalamus.

If you can avoid sugar alcohols, have a regular sleep schedule, and eat when you wake up and when hungry, and drink some coffee here and there, I believe that you too can rid yourselves of this pain.

I hope this information can help someone. Tell it to anyone that has cluster headaches. The key to inner peace is an honest lifestyle change. Perseverance and dedication is key.

Glory to Russia.

Title: Re: How I stopped getting cluster headaches
Post by tangerinearmy on Nov 18th, 2015 at 5:18am
to much info in there for me pal. [smiley=blush.gif]


oh and you may or are probably not in cycle or do not have clusters


oh and mushrooms have given me my longest pain free period so there

Title: Re: How I stopped getting cluster headaches
Post by Bob P on Nov 18th, 2015 at 8:15am
excessive masturbation - there is no such thing

Title: Re: How I stopped getting cluster headaches
Post by Bob Johnson on Nov 18th, 2015 at 1:18pm
Thanks for sharing your experience. Most of what you report are experiences which most of us share with you.

Title: Re: How I stopped getting cluster headaches
Post by Slav on Nov 18th, 2015 at 2:08pm

tangerinearmy wrote on Nov 18th, 2015 at 5:18am:
oh and you may or are probably not in cycle or do not have clusters



Yes, I had cycles too. I would have headaches at certain times of day every day, then they would go away for a week or a month, then they would start again. The warmer months of the year are when they were more frequent and extreme as well.

But I must say, it is no coincidence that they went away completely after I made some relatively simple life changes.

Title: Re: How I stopped getting cluster headaches
Post by Potter on Nov 18th, 2015 at 4:19pm
Yep

12074851_1694725684094464_6511810671460806275_n__1_.jpg (46 KB | 0 )

Title: Re: How I stopped getting cluster headaches
Post by elliott on Nov 24th, 2015 at 11:06am
Slav, first thank you for your post.  I'm very interested in your opinion on excessive masturbation and the correlation between this and CH.  If you have the time would you offer some insight into this old topic I posted about it?  Thank you brother.
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Title: Re: How I stopped getting cluster headaches
Post by E-Double on Dec 11th, 2015 at 10:53pm
Hmmm

Title: Re: How I stopped getting cluster headaches
Post by MDB on Feb 12th, 2016 at 1:31am
Hello, first of all excuse my languaje , i dont speak and write english normally, i live in Spain.
I have registered in this forum.. only for this post.
I have Cluster headache cronic for more than 10y
I usually have "bad" two months on year.. ( attacks 10-10 pain   for 1h  every two days ), rest of the year 1 attack 7-10 every 2-3 days ).
I have only in 10 years 6 days in a row without crisis.. ( happen twice )

Focus....
Triptizol..topamax.. didnt work.. manidon (verapamil) low the pain a little...
I am a guy, very analitic.. drugs and medics tried things.. i did try things.. one by one.
After 10 years.. i can say this :

- take two beers / three beers can speed up a crisis
- Take whatever it finish in OL can speed up a crisis ( propylencol, manitol, sorbitol )
I went crazy, when i trowh cigarretes in a middle of a crisis, and the crisis came up stronger... i usually take 20-30 gums sugar-free a day.
I went crazy when i usually take Omeprazol ( stomach care, proton bomb ) for take care of my stomach cause by medication..
when i eat some ending in OL , crisis come stronger.. and.. with nausea , vomit ( i dont know in english.. i trowh up food )
So.. i think.. at least.. in my case and the author of the post.. Alcohol.. and everything that have the same quimic form that alcohol ( can be not alcohol, but have the same quimic form ) Denotate a crisis.
Our body is a bag.. whe put things inside.. untill it fill completley.. and come the crisis..
Beer or Champagne.. or cava can have 100Of100 of posion
Sorbitol..Propylencol.. manitol.. can have 50of100 of poison..
Pre-processed food can have 10of100 of this posion substance...
So my theory is.. that we dont know what whe eat.. but we eat untill.. we reach the top.. then our boddy responde..
Thats why we can speed up or slow the time betwen the crisis....
Our body not know how to elimite alcohol... our body makes too much histamina.. i dont know
Not celiac but intolerant ??? intolerant to FODMAP ??
I dont know.. i am not a quimic, medic.. i am system enginner ...

Thanks for reading me.

Title: Re: How I stopped getting cluster headaches
Post by foodadd on Jul 25th, 2016 at 9:18pm
Thanks for sharing.

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