hello , my name is ryan , but every person i know has called me ryno for as long as i can remember ( mind my typing im going through sighns in my eye and eyebroy right now that ill be in for a terrible night tonight .) i've noticed its hard to type when having shadows in my eye too . any way i live in canada and have had "THIS " pain for a long time and about a year ago i finaly decided that while suffering in my house all alone in rediculas pain that i needed a doctor . so i went to the hospital and had my brother meet me there , half way through the intake i could'nt handle it any more i was already rocking and pressing on my eye and temples but it was'nt enoufg so i bolted for the door ( dont ever bolt for the door in emergency ! security looks at you really serious .) and out the door i went . i ran laps around the building as many times as i could and it seemed to take the focous off the pain . when i couldnt run any more i went back inside and started pacing in a small hidden hallway . there was tiles on the ceiling so as i paced i counted them as i walked back and forth in the hall . i did'nt get takin verry serious at the front desk where my brother filled out my info for me but they intake nurse did'nt seem to belive my pain they pretty much gave me a reg tylonall and said wait for it to kick in ! after an hour of pacing im my lil hall a doctor who was doing rounds the whole time said he was taking note of me every time he passed the hall and it was clear to him after that as to what i was dealing with . he gave me a shot and said it will fix it ! ater a few minutes the intencity was gone and it was fading . i was amazed i have gone through this for years and a shot could have stoped it when it visits for a few weeks at a time . after the signs where gone he told me the shot was nothing and it was all in my head ( the shot working ) and it wond work next time now that i know . i was scared again but i was done for that night
he perscribed some t3's and the next day i did reaserch on this new word "cluster headace" i got shadows and had a hot shower and drank cold water ( only helps while drinking ) and had some physacle activity with a girlfriend , i still ran for the tylonal immediotly after . a few days later i was normal again and was back to my old self . i havent found anything that will acually stop it but i wanted to know about " SINOL" and if taking o2 helps much ?
i've noticed wile sitting here typing with my left eye thumping and my eyebrow throbbing that im making many typing mistakes . almost like pushing the " o " in " to " before the "t" i think thats called dislexia ? but i am having a realy hard time focousing on the keyboard . ( i wonder if that is something to note )
thank you and i hope for a bit of feed back im going to go do some snow shoveling and other hard work to distract me from the pain ( if you smoke a lil marijawana then do activity's it's easyer to distract yourself from the pain . i find . )
Hello Ryno and welcome to our little community. I'm very glad you found us, but very sorry you had to! We here aren't medical doctors by any stretch of the imagination, but we can provide a shared experience, and possibly a little more sound advice that your average medical practitioner. I am a chronic cluster headache sufferer, which means I do not get PF time between episodes. It is 24/7/365. Now don't get me wrong, they come and go, but no more than 2 or 3 days PF time every few weeks.
I use oxygen as my primary source of aborting a headache. I have a very nice regulator that goes from 7LPM to 60LPM. I use the 40LPM setting and can kill a nasty one in under 6 minutes. I also use Imitrex or its generic substitute for aborting when I'm not at home. It works in about 10 minutes or so, but the side effects suck pond water. I am also taking Verapamil at a pretty high daily dose to keep them low and regular.
Although there are not many knowledgeable doctors on the subject, let me say that there is no substitute for a neurologist's diagnosis, and even a headache specialist if you can. You never know, they may have more ideas that we haven't thought of around here (although not very likely, LOL). Still, a valid diagnosis from a neurologist is necessary to rule out even nastier and possibly life threatening things that can act as a cluster headache.
There will be others coming along shortly to provide even more knowledge and friendship. I hope you find a home here and decide to share your experiences. Believe it or not, even the most trivial story may help someone in what they are going through. Hang in there, and browse all there is to offer here. There are many posts, diaries, and even a few rants and jokes to go around. Read up on all of the info and pretty soon you will be more knowledgeable than most medical professionals on the subject of cluster headaches.
Pain free wishes to you,
-Eric
Hi Ryno, Welcome. Eric's already given you some good advice. You might also want to read the "New Patient Intro" on the menu on the right. Getting the right doc is really important. Don't sweat the ER docs or nurses, they are notorious for not having a clue about CH. Nothing wrong, drug seeking, yadayada.
That's interesting what you said about the dyslexia kind of thing. I've been having the same thing and it's bugging the hell out of me. I swear it takes twice as long to type something up. That's actually the first time I've heard someone else raise that. Worth more investigation.
I think the Sinol/capsaicin is worth trying. I haven't heard of anyone getting relief from Sinol but I have heard of a couple having success with hot pepper or capsaicin. I'd try it first without a headache because, just thinking about, I think the last thing I'd want in the middle of a hit is a nose full of hot pepper. Let us know how it goes.
Glad you're here! -Chris
hello Ryno, you can call me "redo" &/or "unsure". I have L.D. problems also and Dyslexia is one of them of many. I had a Ph.D. helped my in my early years to deal with it….. I work around it best by …… pauses and re-reading (get it "redo") the unsure, well…., I'm new to C.H. and "unsure" because my Neuro Dr. has just called me this a month ago. I may be masking C.H. so take my info Questionable, I'm just trying to understand C.H. so any advice or comment would be helpful.
Oh yes Welcome…..
wow ! thank you every one for the great welcome .
after dealing with the pain above my eye ( witch is an indication that its comming on ) i took two t3's and went out side and shoveled snow and cut some wood with my brother and after about 5 hours i realised my eye did'nt hurt and i had managed to avert tonight's episode .
we'll se if it starts all over again tomorow .
once again thank you everyone and have some pain free time :)
Ryno, Is that Tylenol 3? I'm guessing that being outside in the cold air and the activity had a lot more to do with you staying pain free, just like running around the hospital. Cold air works for me sometimes, so long as I don't warm back up too quickly.
Hi Ryan and welcome. I'm not a suffer, but a supporter.
I'm with Chris in suspecting that the cold air had more to do with the pain subsiding than the Tylenol 3 (if that's what T3 is). There is another CH'er that I know that used to sleep on his porch even in the winter to avoid the night time attacks.
I will tell you that it will benefit you greatly to see a neurologist or a headache specialist. With a proper diagnosis it gives you a great platform to start planning out what may or may not work for you. That's the one thing about CH…it seems that what works for one doesn't work for another.
Also keep reading here and asking questions and we will do our best to answer your questions.
wow again , thank's everyone and i feel my next step is to go see a specialist . from the info i have gotten myself i felt it was just something i was gonna have to deal with myself but now i feel there may be ways of stopping or managing this .
once again thank you for all the support and comments . and yes the t3 is tylonal 3
i found the t3 would at least take the sharpness to the pain away . and i know i cant rely on it to take all the pain away . but it did help me to start focousing on other things till the cold air and excercise started helping . last two days i've been ok and im sure this episode is passed . it only lasted for 4 days , all evening attacks . i could sence them by noon though .
i had almost a 6 month break inbetween the last two sesions and it was nice , not sure when it will return but im gonna be cramming in lots of dirtbiking and activity's till then
to everybody
be safe and stay strong ( you know you are )
Great news, Ryno! I loved dirt biking when I was younger. There's just something about winding up an expansion chamber and working to keep the front end down. Have fun! -Chris