Hello Everyone

[projectfluff]

I just wanted to introduce myself.

I found this site through a swedish lady's video on youtube. Ill go by project fluff (my youtube name)

alittle about me and clusters:(long boring story alert)

I'm still not even sure if I have cluster headaches.  An ER docter told me I did a long time ago and gave me tramadol for them.  I ate the tramadol like skittles and for the most part the clusters went away.  but they had plagued me for a month already so maybe they went away on their own.  they stayed away for a couple of years only to return last spring.  Luckily i had a job that i could walk off and sit in the basement and punch my head/take illicit narcotics to ATTEMPT to combat the headaches.  they only helped me cope with stress of getting multiple debilitating headaches a day, not so much the headaches themselves. 

Untill yesterday I thought it was just sinus issues causing the cluster headaches.  Then i saw a video on worldstarhiphop.com of a cluster attack and remembered punching my head and screaming and all around hulking smashing shit the same way untill i either acquired some major pain killers or they went away on their own.  (usually the headaches went away while i was going to get them but i deffinately felt better heading towards a solution then just bruce leeing the hell out mirrors and cereal bowls and walls at my house. 

so here I am.  Worried the headaches will strike this spring and bring my already sensitive living/financial situation to a...clusterf#ck? 

Things that have worked:

Tramadol: Has ssri and snri properties which i believe is what ended the headaches the first time not the opioid action.

Illicit opiates: not effective for the headaches typically but damn they provide a welcome reward for after an attack (advise against these actuelly)

Afrin: seemed to help most of the time I think my attacks are triggered by sinus issues or allergies.  Afrin however is addictive and cause your sinuses to close up if you use it to many days in a row. 

Triggers:

spring (the season)

smoking cigarettes

thats all i know of

thank you

[Bejeeber]

Hey there ProjFluff,

I wouldnÂ’t be quailfied to guess yay or nay about a CH diagnosis for you, but a genuine headache specialist neurologist (NOT an ordinary garden variety neurologist!) definitely would, and IÂ’d recommend making an appointment with one if possible. Make an appointment to get a diagnosis that is, but proceed with caution when deciding whether to go on any toxic pharmaceutical drugging plan.

[Edit: after reading CHf's post I'm remembering to say that if a given attack isn't occurring on just one side of the head, I feel pretty confident it is unlikely to be CH]

High flow 100% oxygen can work wonders for aborting CH attacks (see info here: https://clusterbusters.org/?page_id=77).

And busting can potentially prevent cluster cycles altogether, with a better success rate than any prescription (see Nat Geo video on busting here: https://www.youtube.com/watch?v=qFuL7pcShDk)

[CHfather]

p'fluff, here is the main part of the description of CH from the Clusterbusters.org website (https://clusterbusters.org/?page_id=46):

>>>The attack usually involves severe pain on just one side of the head, apparently centered behind the eye or between the eye and the ear, or between the eye and the top of the head. The pain is a steady and severe burning and penetrating sensation, as if a red-hot spike were being thrust through the eye and into the brain, and then twisted.

Other symptoms accompany the pain. On the same side as the pain, the eye may become red and flow copious tears, the eyelid may droop and the pupil may become smaller. A very runny nose and/or heavy congestion is common.

There are cluster attack behaviors that distinguish them from migraines or other types of headache. Cluster sufferers cannot lie down or remain still, but feel they have to pace around or move in some way. In the worst attacks, they may crawl or roll on the floor, pound their fists on their heads or the floor, or even pound their heads on the floor or wall. Muttering, swearing and screaming is common, escalating with the severity of the pain.<<<

You definitely describe many CH-related things, particularly the severity of the pain, the nature of your reaction to it, the other symptoms (stuffed-up nose), and the way cycles come and go.  I'm sure it's not really necessary to tell you that you should get to a headache specialist as soon as possible.  A general neurologist is as likely to misdiagnose CH as to recognize it (sinus headache is one of the top misdiagnoses).  Drat that Bejeeber for sneaking in ahead of me and already saying this.

Having a cycle that occurs regularly in a particular season is often true for people with CH.  For most people with CH, smoking is not a trigger (but for some it is).  The most common trigger is drinking alcohol.

In the early stages of CH, some treatments help, or at least seem to help.  Typically, tramadol, opioids, and Afrin are not effective for treating CH.  If you have CH, the first thing you need is oxygen, which is the best and safest abortive.  Other medications sometimes help a lot in the early stages.  There are natural remedies, legal and illegal, including the use of hallucinogens (or "busting").

We can tell you more about what to do if you become more convinced that you have CH, but seeing a specialist doctor should be your first action.  And if you do see a doctor, be prepared to insist on oxygen if it is determined that you do have CH.  Even doctors who correctly diagnose CH sometimes fail to prescribe oxygen.