Living with episodic CH.

[Desty]

Hello all.

 

I discovered this community from CH blog, it's nice to see there are other people having similar issues. I spent some time reading posts around forum and can relate to many of them.

I will give my 2 cents living with CH. Maybe someone will find something useful.

 

I had my first cycle when I was 13 years old(now 31 YO) and have had cycles basically once a year for a 1 month period with duration of 15 minutes to 2 hours.

 

When I first had this, my parents took me to numerous doctors(I am from Estonia, Europe, but living in Spain now), back then, they did loads of different tests but was misdiagnosed eventually to common migraine. They gave me basic headache drugs(can't remember the names), which never worked(I was 13 back then, so they couln't really give me codeine of some strong ones). I accepted the condition and literally suffered without any relief for 15 years. The pain levels are severe and always been during attack. I often pinch myself to just not feel the pain behind left eye for a second(yes, it does work :)). 

 

Lifestyle and CH:

From my experience, lifestyle does not play any role of CH. Back when I got it first time, I was doing loads of sports, I would saying about 20 hours per week. No smoking, no drinking(I was 13). I started smoking at age of 18, same with drinking. Few hours I use to be quite heavy drinker, I would say 3 times a week and about half a liter of vodka each time. Past few years I have been doing sports again due to weight gain from alcohol. I do not notice any difference with lifestyle or body changes and CH. I DO NOT do any drugs what so ever, even weed(which is considered drug in Spain, yet can buy it freely from dedicated shops without prescription).

 

 

My common causes that trigger cycles. I figured I will share some of them. 

Cycle trigger, which I had more than ones.

-Long term excessive stress with work. A serious issue which haven't been solved for weeks for example.

-Excessive amount behind computer(15 hours per day for a week, even with highest end monitors money can buy under low brightness settings).

-Spring, when there is still some snow and the first REALLY bright sun comes out(I live in Spain now, so don't have this anymore).

-Alcohol does trigger a cycle, when in vacation, had massive amounts for 7 days straight. 

-Chemical smells(Use to work in car beauty industry, polishing, washing, waxing. When doing longer days at work, cycle was quick to hit me. No issues with normal working hours. didn't wear a mask)

-Overdosing from energy drinks - about 6-7 per day. Just few days will start my cycle. NEVER drinking red bull with vodka.

-Over usage of Viagra/Cialis/Kamagra and other ED pills. 50mg viagra tablets or jelly type of cialis/kamagra. 1 tablet does not trigger cycle, but when taking 1 tablet for 4-5 days straight will trigger cycle in a week after using. Yeh, surprisingly, it takes about a week after pills for cycle to start. 

These are my most common triggers for cycle. My CH cycle doesn't really have fixed dates, it can start whenever. 

 

 

Triggers DURING cycle:

-I have to place alcohol to number one. It's just THE worst thing CH brings to the table. I love alcohol, shot of vodka before good dinner, a fine single malt with good cigar. Alcohol triggers it ONLY when I feel it. A beer before lunch generally doesn't trigger as one beer doesn't really do anything for me. Duration depends on the amount of alcohol, I have found a way to still party all night with sumatriptans but next day I will have 10 hour headache which has it's ups and downs in terms of pain levels. 

-All bright screens - TV, monitor, laptop, phone, tablet. 

-Sleeping. I don't get headache few hours after sleeping like some people, I get them between 6-8am after sleeping 6-8 hours. Oversleeping will trigger it.

-Gasoline or other forms of unpleasent chemical smells. Car exhaust, tire smoke included(I do motor sports, during cycle, I can't perform).

-Sports or other forms of workout, such as sex.

-Bright sun when without sunglasses.

-Air travel - HOLY CRAP this is bad. It's the most intense pain when flying high altitudes. Not sure if it actually triggers during flight, as I had it once and I never flown again during cycle.

-Driving in tunnels! I know it's weird, but it has happened so many times. We have many tunnels over here and usually they are short. About 200-250m, then 500m with normal road and then tunnel again. Change of level of light? I know in medicine some tests are done to cause seizures using flashing light.

There are many more, but these are most common ones.

 

BUSTING during cycle with sumatriptan:

-Few years ago I discovered sumatripans. Oral tablet seems to work best for me, I have never tried injections, as I have no need for them. My favorite, most quickest acting one is imigran NEO 50mg. They sell it in most pharmacy's in Spain with prescription. 4 tablet in package and costs 11 euros. Luckily it's not the drug that locals abuse, so I had same prescription for past 3 years, no need to go to doctor to ask new one. I always had session in morning and evening. With these tablets, I can prevent them. I know it is suggested to take one when pain starts, but I learned that taking one at 5am in morning actually allows me to sleep past 6-8am. So during cycle I have alarm set for 5am. My second session everyday sometimes starts during 1-2PM, but this is not common. Guaranteed next one starts between 5-7PM, so to prevent this, I take again one tablet at 3-4PM. It's been ABSOLUTE pleasure having CH cycles with these tablets compared before. I always have about 10-15 tablets with me when I travel and not once anyone asked in airport security about these. Even in high security countries such as Israel.

-When pain starts, sumatriptan usually work within 15-25 minutes.

-Alcohol and sumatriptan, one before first glass/shot of alcohol, one tablet after 4 hours of drinking heavily and pulling 8 hour party session pain free. Yet, next day, no tablet helps and pain bounces from medium to high for long period, 8+ hours.

NASAL SPRAY triptans made the pain worser. Somewhy my left eye and airway is connected(maybe that is the reason), meaning - when I hold my nose, close my mouth and blow our air, it starts coming out from my left eye. It's rare condition, but not unique. There was even a guy in Guiness World Records, who got a record by blowing a milk from a eye for 30cm-s. He inserted it from nose and then just blew really hard.

 

BUSTING during cycle without tablets, the days of suffering(I didn't know about the tablets before because I didn't know I had CH):

-I use to wear a pirates eye lid on one eye when watching bright screens. This helped to reduce the amount of sessions per day.

-When pain starts, changing scenery. Best one - dark and quiet room.

-During longer severe session, pinching or hitting myself(obviously not that hard, just to feel it enough). It does not bust it, but helps to break really bad session for a second or two. 

-Spicy sauce did help me sometimes during session. Just few drops of really hot one and cluster was busted in 5 minutes.

-Shiatsu massage therapy. It has been proven itself so many times to reduce period of cycle, also reduce daily sessions during cycle. It's the massage, that involves stretching and pushing nerve points with your cloths on. Not a relaxing massage, this really hurts.  

Now, let's go with some really weird ones:

-Masturbation during session. Not actual orgasm, but erection. I know it's hard to get there, as pain is bad and watching porn from bright screen makes it even worse. I usually get there quick and when I keep erection for 10 minutes, pain usually backs down or completely goes away. I have so many stories when I am in public bathroom, my jeans down and trying to get erection while holding phone. 

-Standing on my arms sets. About 5-10 second on my arms, 10-20 second on feet, 5-10 seconds on my arms and so on. Not always this works, but this use to be my normal routine when session started.

-Light electrical shocks from AA batteries. Literally just touching with your tongue for a second, 3-4 times. It didn't bust cluster, but helped to relief it. 

I know some of them might sound like a stupid, but when the pain levels are really high, one tries to conduct different experiments to even slightly relief the pain. After testing many of them, one becomes more creative.

 

 

Thank you for reading,

 

 

 

[jon019]

Hi Desty...welcome...that's quite a ride you describe...since there are no questions, did you want us to comment or are you just reporting?

best

jonathan

Edited October 27, 2019 by jon019

[CHfather]

This is interesting and valuable.  Thank you.

But I have three words for you. Oxygen, oxygen, oxygen.  It's faster than your pills are working, better for you, less guesswork involved, and no need for the other strategies you describe.

And a few more thoughts: D3 regimen. Energy shots. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

It's rare for "dark and quiet room" to be an option for someone experiencing a CH attack, so you are fortunate in that way.