lizardqueen420 wrote on Jun 5^th, 2013 at 8:39pm:



Hiya lq,

I'm gonna attribute THAT BS to the frustration that we ALL have experienced.....my thoughts.... FWIW....

I'm chronic....7 yrs now...plus 24 episodic...whatever....

what I know about ch was learned HERE or at the National Headache foundation...

with RARE exception...I...WE..know more about ch than 99.99% of the medical profession..."no one understands" is the overstatement of the millenium...please!...that's an insult to about 10,000 of us...definitely NOT appreciated....

I have personally known a person with ALL the classic symptoms of CH...based on the caution I learned here...that was not enough. I advised a full medical eval....he did. Turned out he had  brain tumor...he's still alive...if just treated for ch...he would NOT be....

"all they preach" is headache specialist, O2, and meds! Are you freaking kidding me?... the proper response would be.... "THANK YOU!"

been HERE since 2001-2...if not...you wouldn't be reading this...ch.com saved my life...and countless others....

..there is an OLD saying here..."take what you need and leave the rest"....amongst the WISEST advice I have ever received...please take note...and please don't take offense....my advice....3....DEEP .....breaths...and come on back...

Best

jon

Lizardqueen, Sean here, some of the people here are in the middle of an episode right now rolling on the couch, moaning and crushing there head with their hands. They can't think, look at a screen let alone type or form a thought in their head except to wish they weren't in agony. Some are totally PF but all know the excruciating pain of a cluster and all of wish you weren't suffering. Whenever I make a mistake and knew better I refer to a quote I learned as a kid, " knowledge not acted upon is useless". You have been given a whole lotta good advice but other than our empathy that's the best we can do' The rest is up to you. My wife has suffered from migraines  from the age of 7, that's 55 years of pain and until they came out with Imitrex the best she do was dope her self up, lie down in a quiet dark bedroom, not move for fear of puking and try to sleep the pain away-- for days at a time. Textbook migraine.  I'm textbook cluster-- sudden onset and just as sudden ending, nightime and clockwork regularity, can't sit still when in the middle of a ch, no way can I lie down, insane pain that responds to ox, actually have considered the alternative and on and on. Maybe you have both or maybe you have neither.
     We don't know what you have but you gotta find out, that's what everyone is saying her. 
   You have our deepest sympathy but unfortunately that won't make the pain go away.

  Good luck, Sean

If your talking about me with that comment your extremly wrong. I have done my homework just as most of you have. And if you'll notce my good friend I am the only one who asked her about the knots in her neck. Which she HAS! Why would I ask about that if I diddn't know something? The reason going to a massage therapist dosen't work is because they are trained NOT to massage deep around the spine so as to avoid any liability, I know this because my ex-wife and sister-in-law are both massage therapists. And I also know for a fact that the knots cause clusters, because they cause mine, they may not cause yours, but I can testify to the treatment I did and maybe HELP someone on here if all of you weren't so negative. This was the whole reason I never joined this site years ago thick headed one-wayed idiots that think that there way is the only way and won't give anything new a try.

In meds we trust! Go take some vioxx, Acomplia, Raptiva, Darvocet/Darvon, Avandia, Xigris or Trasylol while your at it. Trust in the drugs my friend you'll be better off. Riiiight.. Keep trying to cure the symptoms and you'll never find the Beast...

P.S. Please don't actually take any of those meds, they have been recalled by the FDA cause they killed a lot of people. You know who made those drugs, the same scientests that did the CH study. They don't want a cure they just want to stay on your payroll.

I'm included in that comment to because I used to think that way to. I never thought my clusters could be caused by something so simple. And wouldn't listen to any advice.

Brew check your messages.

Yea, the tone of my adress was the way I intended, as yours when you said "newbies who know nothing".  Sorry I get a little hot when someone says im an idiot. I'm sure you would to. Sorry for the comments, I will calm down and believe me there is a medthod to my madness, I think I may be on to something with these CH's, just need more info from you guys and maybe a test group to quantify my findings.

Oh and I did not advocate massage therapy, sure try it, see if it may help you, but it diddn't work for me either. Verapamil helped but the side effects were worse than the relief in my case. And actually opioids did help mine but not the way you would think. I would only take 1 pill a day, half in morning and half in afternoon and it reduced the frequency of my attacks, diddn't help the pain though. I know they are dangerous but verapamil was more dangerous in my case. And I don't have insurance so I couldn't afford much else. Louisiana's health care sucks.

P.S. Your in my buddy list good freind, if I diddn't like ya you wouldn't be there.

Sorry for the misunderstanding, I've had a few messages from some OTHERS who told me that I know nothing, and I assumed you were of the same mind. I see now that you are not.

The difference is that in massage therapy they are taught not to go as deep or as hard near the spine as we need, its a liability for them if something happins. Also, if you are the same as me with the knot/knots near the top of the spine on the CH side, in or around the sub-occipital muscle group, then you will have to work on them yourself. I found in my case that I had to constantly work on them all day long, something else massage therapy can't do, unless your married to a therapist.

So this is what I do, there are four main areas to look for, 1st is the spine near the base of the skull in or near the sub-occipital muscle group, 2nd is the side of the neck midway between the head and shoulder near the omohyoideus muscle, 3rd is the front of the neck at the base of the sternocleidomastoideus muscle near the clavicle(collar bone), 4th is near the ear below it about an inch and a half along the sternocleidomastoideus there is a gland there that swells, you have to be careful in this area though it is a known pressure point. There may be more spots, everyone is different and the nerve could be pinched in a different spot. Each person must experiment to find theirs.

I work the areas as hard as I can stand it and then alternate with an icepack, be VERY careful when using an icepack on the side and front, as there are 2 main arteries/veins near those spots. This is what I did, and it stopped mine. I just look at them as my enemy and wipe them out.
I hope this helps and if you have any questions please feel free to ask.

I also would like to ask if anyone has had a an ultrasound/MRI of the lymph nodes in their neck/head? And what were the results?

I'm currently looking into some herbal remedys as well and will keep you informed of the results. Ashitaba looks promising, but little is known about it, I ordered some seeds to grow some and will conduct the trial on myself whenever my CH's return.