THX U! THX U!! THX U!!!!

[Jarhead]

I thought I was alone until a few weeks ago. Every time I told someone abt the pain they would talk about there sinuses being clogged...

Thank you all for this website. I am not sure that you know, but you are seriously saving lives... I am a former Marine (hence the name) and thought that much of my service as well the activities contributed to what would be a miserable rest of my life... I'm ok with that as I love my country and will assume that pain if necessary... but WOW... you all have made me feel like I am not only here to absorb pain... Thank you, and I mean that with all my heart.. thx you.. I have an appt w a neurologist on the 18th and for the first time in two months feel like I can live again...

PLEASE KEEP COMMENTING!!! Some of us may not speak up but we are here...

[CHfather]

What a nice post, Jarhead -- thank you for it.

Do you feel fairly certain that you have cluster headaches?  If you do have CH, you will really want to get oxygen from your appointment, among other things (most likely a preventive such as verapamil and maybe an additional abortive (in addition to the oxygen), ideally injectable sumatriptan.  Oxygen is often the tough part, even though it's listed in every physician's guide as the #1 abortive.  You should probably look over the information here -- https://clusterbusters.org/oxygen-information/-- and consider printing out this journal article to bring with you: http://jamanetwork.com/journals/jama/fullarticle/185035   Neurologists don't prescribe oxygen anywhere near as often as they should.

If you have CH, the D3 regimen will almost certainly help you, too.  https://clusterbusters.org/forums/topic/1308-d3-regimen/

Keep us informed, please.

[Jarhead]

CHFather... I am very happy that you responded. there are a few individuals I wanted to thank individually and you certainly are one of them. I don't mean to sound like a stalker but this pain has kept me searching. You, thmh and the group of others, I would like to list them but may miss one without doing them justice.

You have helped without knowing at all... as I paced my house at night thinking nobody could deal with this pain... U all were there. Please understand whether it is cluster headaches or not... you were still there... 11/18/2016 with MHNI, suggested by this website.

I really can't explain to any of you how much I am relieved, (and sorry) for each of you...

I really thought I was alone...

[john2000]

Jarhead,good luck with CH

 

I agree that about CHFather ,he deserves a freaking medal for what he has done here,,,and many others too, who respond daily, 

If it wasn't for this forum , I would be still suffering without O2 due to incompetence  of my doctors.

[Jarhead]

John2000. I agree!!! I am going to my neurologist appointment with at least a minimum of knowledge. I actually mentioned this website and they acknowledged it and asked if I had O2 yet? I told them I did not have a diagnosis yet so had not moved to that. I have been using the D3 regimen for two weeks as that is when I found this eebsite and have some semblance of order at this point.

I really CANNOT THANK YOU ALL FOR LETTING ME KNOW IM NOT ALONE!!! You all should be proud of yourselves.

I know they call them "suicide headaches", something I would not do... however, I started to ubderstabd why Native American Indians would walk off into the wilderness to die...

Thank you all so much... you are life savers!!!!

[Dallas Denny]

Semper Fi and welcome to the community from this old jarhead! Oohhhh Rahhh!

Dallas Denny

[filacibin]

well said jarhead,these brilliant folk on here really do need more recognition,like you i am stuck for words for the gratitude i hold for likes of chfather ,batch,spinny,can not name all, as so many!lets not forget are main man on the front lines"bob"!my respect for that great man is massive !

[CHfather]

Thanks very much for the kind words.  They mean a lot to me.

 

I just posted this at another thread, but it seems pertinent here: My daughter has CH (I don't).  Six years ago, people here helped us learn how she could manage it, after she had been misdiagnosed and mistreated for years by some "highly trained" neurologists.  That's why I'm here -- out of gratitude; to keep learning as much as I can; and to try to help keep anyone I can from going through what she went through.

 

The heroes of this board and the CH community are too numerous to mention. In my view, everyone who fights CH is a hero.  Back when I came to this board, before Facebook, this was a livelier place. There were at least 20 people here, whose screen names I could still list off the top of my head, who helped me and my daughter within a matter of just a few days. It brings tears to my eyes just thinking of how much I owe, and we all owe, to them.  In many ways, I'm just a conduit for what they taught me.

 

I've been really happy lately to see some newer folks taking up the campaign here, providing great help, advice, and support.  Dallas Denny, spiny, and I, among others, are getting up there in years, and so until there's a cure or at least a 100% effective treatment, there's going to be work to be done and eventually it will be done you all.  Keep it up, folks, please keep it up.

[mit12]

Well said CHfather.

[Jarhead]

Thanks all for your responses... had to leave deer hunting in Michigan for my appointment. I was told I was classic as far as episodic CH goes.. I was even told "I look like a CH" sufferer. I was asked if I had ever seen pictures of CH patients by the doc... light eyes (green or blue) masculine fascial features... anyone else ever heard this? I told them I'm not in pain any longer and that I have been doing the D3 regimen. That I have a small "kinda hangover" type headache.

They were very familiar and that made me feel much better about being there. They asked that I return at the first onset of symptoms to prescribe oxygen and Verapimil, I will use this site to research further. For some reason it seemed they wanted to wait until I had an issue to prescribe oxygen.. not sure why?

You guy's are the best!!!! Thank you so much, I would still be in the dark without the info you have shared.

I have seen there is a mention of FB page, is there someone I need to e-mail to join??

Thank all of you contributors so much... you may not know it, but there are some of us who sit and suffer in silence, not knowing what to do, but with all of you sharing your experiences it is freeing knowing this can be managed.

Wish I could buy EVERYONE of you a beer!!!

Thanks again,

Jar/Clusterhead

PS- DD, Semper Fi Brother!!!

[CHfather]

Wow, doctors who still believe that crap about eye color and facial features.  All kinds of crazy stuff out there, but the biggest survey ever done of cluster patients found "the predominant eye color in cluster headache patients is brown and blue, not hazel as suggested in previous descriptions."  There was a time when the facial features of people with CH were considered to be "leonine," and women with CH were considered to look "masculine."  You can see some of that here:  https://books.google.com/books?id=aJRV199FZcoC&pg=PA288&lpg=PA288&dq=cluster+headache+%22leonine%22&source=bl&ots=fyMnbJA4n9&sig=OZJF346qIx1ymX7VxM4RGpjPqBw&hl=en&sa=X&ved=0ahUKEwjAudOym7TQAhUF04MKHVvcAMsQ6AEIODAE#v=onepage&q=cluster%20headache%20%22leonine%22&f=false

 

Some of that stuff is downright disgusting. "Men with cluster headaches looked lion-like but inwardly were like mice," it says, in what is a "serious" book about headaches published by a serious publisher in 2001.  What is wrong with these people? 

 

Of course, it wasn't long ago, and it still is widely true today, that women often weren't diagnosed with CH because supposedly it was a "male" condition.  Women were believed to get migraines; men CH.  A lot of harm done by all that nonsense.

 

You can see a collection of folks with CH at that Facebook page.  It's just called Cluster Headaches.  There are apparently quite a few FB groups, some of which are disliked by folks here.  You have to apply at the FB page to be accepted, but usually that is pretty straightforward.  If you have any problems, let us know.  Some of the administrators/leaders used to be regulars here.

 

Others might correct me about this, but since Verapamil is supposed to be a preventive, it would seem to me that unless you have a medical condition that is contraindicated, you ought to be taking it now, or at least start before your cycle is expected (if you want to play roulette with guessing about that).  It takes some time for verapamil to take effect.  Regarding oxygen, maybe they were trying to save you (or someone) some money, but there is a tradeoff between having to get to the doctor's office once a cycle has started, and then going through the potential hassles of getting your O2 delivered and set up properly, and just having it set up and ready on the first day you need it.  It would also possibly be good for you to be ready with the good mask (which you could buy now) and a higher flow regulator than the one you'll get from an O2 supply company.  But you can't really get the right regulator until you know what size tanks they'll be giving you, since there are two types of regulators, and some fit smaller tanks and some fit larger tanks.  You should receive one or more of the larger tanks, but we've seen all kinds of BS go on here regarding oxygen suppliers.  Overall, if you felt like pushing the docs a little more about getting O2 now, and starting on verapamil before your cycle, I don't think that would be a bad idea, but that's just me.  I hope they also intend to give you an injectable sumatriptan, for possible breakthrough attacks. 

 

The mask designed for CH can be ordered here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

 

Have you considered busting (as described in the numbered files in the ClusterBuster Files section)?

 

Ginger tea can sometimes help that "headache hangover" feeling.

[amon10]

CHfather as far as the verapamil goes it can be a personal choice. My periods of remission have been lengthy and different. I have no desire to be on it for months or years when not in cycle. I have talked this over with my Neuro and she is ok with that as long as I ramp up quickly when cycle starts. She would like me to take a predinsone taper till it kicks in but I haven't yet. When through having a child with cancer so not fond of the steroids.

[CHfather]

amon, thank you for this.  As long as people are getting sensible medical advice, and understand their options and what they might mean (as you clearly do), I'm fine with whatever they choose. Maybe you're doing the D3 regimen, which has proven to be a very effective preventive for many.

[amon10]

Yes CHfather it definitely helps to have a good relationship with your doctor. She actually directed me to this group, which really helped me to finally start utilizing oxygen much more effectively. She gave me the script for 02 no problem, just was not fully up to speed on technique. But I respect someone that admits they don't have all the knowledge.