HI
  My name is Willis, I was injured while serving in the Navy in 1997. i suffered nerve damage to my left arm. I started getting pain in my left side of neck and then it would jump over to the right and then the headaches would start. I was diagnosed as having CH. It has been this way now eversince. been on many meds but i curently take ver 180 and tizanidine 2mil 3xs a day. since startining tizanidine headaches under control as long as i take it easy. my neck is stiff and aches all the time. i just went through a very bad cycle that made neck very weak and caused alot of pain. worst cycle ever for me. been through many over last 15 years. did get MRI and shows some arthritis in c4-5 and disk bulge but docs say is normal for my age(40). hope everyone has CH free holiday. Thanks

Our headaches are vastly different than yours.

                 Potter

There are a number of disorders which mimic Cluster but which are not primary headache problems.

Suggest you print this message and use to discuss diagnostic options with your doc.


Link to: cluster-LIKE headache.


Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Well im not suprised you think my chs are different than yours. not here to debate whos right or wrong.  i am a clusterhead and proud of it. got 15 years of medical records to prove i get them and been through all the same bs as everyone else. suffered through cycle after cycle. thanks for jumping to conclusions and not listing to a word i said. gee just like every doctor or person i try to explain what i go through, but hay you would know cause only you understand what its like right.

hell@back wrote on Dec 13^th, 2012 at 10:25am:

Well im not suprised you think my chs are different than yours. not here to debate whos right or wrong.  i am a clusterhead and proud of it. got 15 years of medical records to prove i get them and been through all the same bs as everyone else. suffered through cycle after cycle. thanks for jumping to conclusions and not listing to a word i said. gee just like every doctor or person i try to explain what i go through, but hay you would know cause only you understand what its like right.

Listen to what Bob has to say.

                 Potter

               

no thanks, dont direct me to another site. please explain to the me and everyone else what you really think because im just dying to here why your the expert. you came to the conclusion based on a very little bit of info and dont have the guts to explain yourself. dont talk down to me as if you are cause you dont know jack either.you use words like vastly different, and mimic. please tell us all what you really think.

hell@back wrote on Dec 13^th, 2012 at 11:49am:

no thanks, dont direct me to another site. please explain to the me and everyone else what you really think because im just dying to here why your the expert. you came to the conclusion based on a very little bit of info and dont have the guts to explain yourself. dont talk down to me as if you are cause you dont know jack either.you use words like vastly different, and mimic. please tell us all what you really think.

  I think you want a pissin match.

            Potter

your lack of respect for veterans and predudice against newcomers says it all. no pissing match necessary. not here to win anything.

hell@back wrote on Dec 13^th, 2012 at 12:31pm:

your lack of respect for veterans and predudice against newcomers says it all. no pissing match necessary. not here to win anything.

I served two tours of combat in Vietnam.  Shoots yer lack of respect for veterans in the ass.

       Potter

            

---

ok potter know i see why you are slightly resentful towards others. you could of said hello , acknowledge you were a vet also and been polite but i suppose i can just shoot that in my ass too. thanks for your service potter you have my respect sir, but that still does not make you the expert here on chs, and you have not explaind to me why my chs are so different.

hell@back wrote on Dec 13^th, 2012 at 12:46pm:

ok potter know i see why you are slightly resentful towards others. you could of said hello , acknowledge you were a vet also and been polite but i suppose i can just shoot that in my ass too. thanks for your service potter you have my respect sir, but that still does not make you the expert here on chs, and you have not explaind to me why my chs are so different.

hell@back wrote on Dec 13^th, 2012 at 8:24am:

Hello, i was looking for any one who has actually been diagnosed with cervicogenic headaches. i have read some archives and done some research and i do believe i get this type of headache and i was hoping to talk to someone who is or has been treated for this type of headache. thanks.

Your first post.

        Potter

And yes I am an expert in ch and dealing with ch.

           Potter

have you been diagnosed with cervicogenic headaches potter?  my first post was an attempt to find someone who has been and my newbee post was just a bit about my chs and myself. all i want is to be properly diagnosed and get the right treatment. no hard feelings sir.

hell@back wrote on Dec 13^th, 2012 at 1:29pm:

have you been diagnosed with cervicogenic headaches potter?  my first post was an attempt to find someone who has been and my newbee post was just a bit about my chs and myself. all i want is to be properly diagnosed and get the right treatment. no hard feelings sir.

  You said you had been diagnosed and now you're looking for a diagnosis and we don't do that.

           Potter

there is a problem with my medical treatment. I get treatment through the VA.  As you probably know VA clinics are not the best place to get treatment for CH. I see a neurologist. You AND i KNOW MORE about CH than they do. my diagnoses was based as just CH, BUT LIKE YOU said potter my headaches are different and i need different treatment. i know that the VA is stuck on stupid and dont understand there is a different kind of ch with a different cause. this is exactly my problem. try telling it to the va.

Welcome to the board Hellback, I responded to your other post and was initially confused by this post, which you have cleared up.

Bob Johnson is our resident research guru. I can guarantee you nothing he posted had any purpose other then to help you. He has done a lot of research into "cluster like headaches", the problem with some of them is they are potentially fatal, although they respond to many of our pain killing tips. So he's really big on a specialist eliminating these other possibilities before people start throwing pain killing advice.

Potter is a man of few words. I've met him in person and can assure you while his posts sometimes sound a bit "prickly", he's genuine in his desire to help those suffering from CH

My suggestion is to let this thread die before it gets any pricklier! ;) Stick around here and read these boards like crazy. You'll find more then one person here you'll disagree with. That's NOT important. What's important is finding SOMETHING here that helps.

Wishing you some pain free time soon.

Joe

Hey Willis,

Welcome to our community.  I'm sorry you felt you weren't treated with respect when you first arrived.  Being treated with respect is one of the cornerstones of our site as noted here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

As a 23 year retired Air Force vet myself, I say this with all due respect... I don't think you represented yourself fairly when you first posted by starting a thread on a cluster headache site entitled "cervicogenic headache".  My first impression was the same as Potter's in that you had been diagnosed with something other than CH.  I also don't think it was fair for you to say Potter had a lack of respect for veterans.  Nothing he said was disrespectful to you as a veteran.

Listen, this community has been here since 1998.  We've seen tens of thousands of people walk thorough our doors and we've seen posts about every kind of headache (and treatment) you can imagine.  Trust me, we've seen it all.

So when someone new shows up on the front doorstep and says they've been diagnosed with a different type of headache and then starts to get defensive when someone tries to point them in a direction that might actually be of some help to them... well... it just isn't too productive of a conversation.

Bob Johnson gave you some good information based on how your represented yourself to the group and Joe (Guiseppi) gave you some GREAT info after the initial conversation went south.

I think that we've found over the years that CLUSTER HEADACHE is a very specific primary headache (which means it isn't caused by some other condition, it actually IS the condition).  Sounds to me like you've been told your diagnoses of CH is a different type of CH with a different cause (more commonly referred to as secondary headache).  As someone who suffered with CH for over 20 years, I personally find that pill hard to swallow.

We'd LOVE for you to stick around and research some of those links Bob told you about.  And if you'd like to talk about your cluster headaches, we'd be more than willing to lend you an ear.

Hope this sheds some light on the subject and clears up any confusion.

Thank you for your service and I hope you find something that gets rid of your pain!

Regards,

DJ

DJ wrote on Dec 13^th, 2012 at 7:51pm:

Hey Willis, Welcome to our community.   Thank you for your service and I hope you find something that gets rid of your pain! Regards, DJ

Ummmm...class will out...and I'm thinking anybody who has been here for more than 10 minutes will recognize the CLASS from the man briefly quoted above. I'm a lucky man to be here...we are a lucky family to have each other...gathered by THIS man!

MERRY CHRISTMAS DJ, Steph, the wee one, ALL of yours.... and OURS!

Best,

Jon

BTW...someone...not sure who  ::) said this...."Adversity does not build character... it reveals it."...any ideas who??????

jon019 wrote on Dec 13^th, 2012 at 10:49pm:

BTW...someone...not sure who  ::) said this...."Adversity does not build character... it reveals it."...any ideas who??????

James Lane Allen is attributed with this quote - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Anyone who can walk with the beast or support someone who is visited by the beast truly has character.

HI Willis, my name is Tim and I'm fairly new to this site as well. I have read all arguements and agree that you were greeted in a left-handed manner. I have never heard of CH's being caused from direct injury. However, I'm now an expert on this matter. I feel that Potter isdefensive for the community as a whole because in the past they have had some real pieces of work pass through here. Your headaches sound peculiar to me though. Perhaps (not trying to seed you with false hope), your headaches are "cureable". As you mentioned, you get your medical attention from the VA, which anyone knows that they take such lousy care of our veterans. I really hope and pray that you get the proper medical diagnosis and care that you need and can be pain-free for the rest of your days. One thing I hope everyone here can remember is why we are here. PAIN! Perhaps someone may come here that doesn't have CH's, but I feel that is no reason to shun them. We have all lived a great deal of our pain misunderstood or not believed. Willis's headaches sound different from ours and hopefully the URL's Bob gave can lead him down the road to recovery. Until that day comes, I'm certain that this community will support you through your ordeal. And once again, nobody is saying that you aren't in pain, we are just saying that theydont sound like typical CH's. As far as you being injured for services rendered while serving your country......Thank You. We Americans take our freedoms for granted. If it wasn't for the sacrifice of our young men and women, we wouldn't have such a great nation. Thank You!

Tim in Texas wrote on Dec 14^th, 2012 at 9:05am:

HI Willis, my name is Tim and I'm fairly new to this site as well. I have read all arguements and agree that you were greeted in a left-handed manner. I have never heard of CH's being caused from direct injury. However, I'm now an expert on this matter. I feel that Potter isdefensive for the community as a whole because in the past they have had some real pieces of work pass through here. Your headaches sound peculiar to me though. Perhaps (not trying to seed you with false hope), your headaches are "cureable". As you mentioned, you get your medical attention from the VA, which anyone knows that they take such lousy care of our veterans. I really hope and pray that you get the proper medical diagnosis and care that you need and can be pain-free for the rest of your days. One thing I hope everyone here can remember is why we are here. PAIN! Perhaps someone may come here that doesn't have CH's, but I feel that is no reason to shun them. We have all lived a great deal of our pain misunderstood or not believed. Willis's headaches sound different from ours and hopefully the URL's Bob gave can lead him down the road to recovery. Until that day comes, I'm certain that this community will support you through your ordeal. And once again, nobody is saying that you aren't in pain, we are just saying that theydont sound like typical CH's. As far as you being injured for services rendered while serving your country......Thank You. We Americans take our freedoms for granted. If it wasn't for the sacrifice of our young men and women, we wouldn't have such a great nation. Thank You!

     I take exception to that comment as I've had nothing but great care from the V.A.

               Potter

Potter, I'm glad you receive good medical care at a VA hospital. Me not being a vet can't honestly say that I have first-hand experience of the good or bad medical care that vets seem to get from these medical centers. I will say however, that most vets I know speak of only horror stories and malpractice that they have suffered at the VA. Perhaps I shouldn't speak of the quality of medical attention at all VA's give as abroad. I don't think that would properly encapsulate a generalized quality of service. If I offended anyone by saying that all VA's give lousy attention....I am truely sorry and retract that comment. That would be like saying "all headache centers in North America are only populated with uneducater neuros who are sympathetic to CH's sufferers". We all know that a lot of Neuros tend to want to dismiss their patients symptoms and move onto what they feel is wrong.*See....Oh you are having migraines...have some Amidrine* These days it seems like they listen more than what they did 10 years ago. Yes, I'm sure they're are still some quacks out there who still won't believe us.

I would like to clairify a few things. i have had 3 brain MRI. ALL NEG.1 neck MRI. MULIPLE exams to root out other potential causes. The va has done everything they could to find a cause. since they found no cause they diagnosed me with CH. Now i told them since my injury 15 years ago that i thought my neck pain was related to the cause of my ch. THEY refuse to listen so i have suffered through CH CYCLES ever since with no medications or oxygen having any real lasting effect. now it doest bother me if any thinks my ch are some how different or cluster like headaches. i get ch, and i have for 15 years. they are getting worse and so is my neck pain and problems related. this is why i believe that mine are caused by something wrong in my neck, because they are getting worse and normal ch sufferes do not have so many neck problems. this has led me to cervicogenic headaches as a possible diagnoses. the va has been difficult to get their head around it because my NECK MRI is not conclusive, and because they have run so many other tests.  i have had good va drs and some bad. but for the most part  it has been their reluctance to look further into my neck. i got a second opinion about my neck outside the VA but same result. THE DOCTERS think my neck problem AND CH are to different problems, or neck problem is secondary to CH. I am going to fax some articals about cervicogenic headaches to my neuro and see what she thinks.  Willis.

Ours has been narrowed down to our hypothalamus.

               Potter

This is just my opinion on the hypo being the cause, it is affected by the ch just as the eye, sinuses, temple, jaw,etc. i feel it is just in the middle and takes a hit like everything else, but it is the main reason why the ch is a right side headache. is a conduit so to speak. and after it is irritated it reacts distributing pain. so what irritates it? other injury? Vascular? chemical imbalance? born this way? I have read the long list of cluster-like headaches and reasons for them and for me there are just to many reasons to pinpoint the hypo as the cause, but i cant rule it out either because for many it may well be. For me , i feel my neck problem is what is affecting the hypo and causing ch.     Willis

You're perfectly within your rights to question the hypothalamus theory, Hell@back, because while there's little doubt that our hypothalamii (sp?) are different to those of other people,  there is just as little to say whether this is the cause of CH or the result.

To this day I wonder whether our 'cluster bumps' are cause or result and no-one will ever convince me there's no connection between CH and sneezles. Dunno which causes which, or perhaps there's a common origin, but I know that they walk hand in hand and bugger the science.

Don't be put off by "facts",  old mate, nor by those who insist there is only one truth.

Always ask questions until you're satisfied with the answers.

Full steam ahead and damn the torpedoes!