Fabalicious

Thats a good idea Didg. I was thinking of having a Neuro as my primary but I like the idea of an internist better. Thanks!

Yes thank you SO much Bob!!! I am signing up now! Hugs!

Hey Renee! and Welcome! First off I want to thank you for being a supporter. Supporters have a tough job, but we need yall so much, and too often your contributions are not recognized due to the intense pain of a headbanger. So HUGS and thank you so much! As for everything else, I am in total agreement with CHFather, he is our Yoda, and I can't even fathom all of the knowledge he has about CH. I can tell you from my own experience to please tell your hubby not to get too happy with the Imitrex if he is chronic. None of the other stuff worked for me, but trex was a great abortive and prevention med. (until I went chronic) the thing is....if you take trex to prevent the attacks, things will be shiny for about a year. Then you realize that you are taking more and more....then the side effects start coming into play, and the CH gets worse and worse. (I havent even mentioned the expense) But with the side effects you start to realize that even though these attacks put you through 90 minutes of holy hell, they dont cause any permanent damage (at least physically) and that you can suffer through the attacks 3-6 times a day, or you can have a heart attack and die. I chose the suffering. And I can tell you that getting off the Trex is one of the hardest things I have ever done. Holding that shot in your hand knowing it will make the pain stop, omg its terrible. There is so much info on this site about other ways to treat this condition without doing permanent damage to your body. Just please have him read it all before he makes any decisions. HUGS and PFD to your hubby!

Thanks y'all! I really appreciate all the encouragement! CHFather, I think you are probably right about my coming clean to my hubby and my family as a whole, exactly what we have to deal with when we are in the throws of an attack. Knowing that they know, I guess just takes a little bit of the pressure off. I don't know why I hid it from them for so long, embarrassment, knowing how bad it looks to others and not wanting them to freak out, or worry, I don't know. But its nice now, they know they can't help me, but I also know that they are there, and just knowing that brings happy tears to my eyes. I am so grateful to them(more than they will ever know) for being there. LT, I am downloading that book to my kindle as we speak. Beej, Thank you...for everything, your support has been such an uplift. You are awesome! THMH and Razor, Yes, you are right, its helping a lot! I was wondering if yall have any tips on clearing the mind, or is it just something I gotta learn to do on my own? Cause I need a construction dumpster to clear out all the crap from my mind...lol and Diamond, I agree with you that stress is a symptom, but I think that buried stress might also be a cause. At least a catalyst. I am taking all my buried stuff out, one situation at a time and dealing with it and throwing it to the proverbial curb. I have enough on my plate now, without adding all the terrible things that have happened to me over my life still messing with me. HUGS to y'all, and PFYs (pain free years)!

Hey everyone! Many apologies for my lack of posts this past week, but my beast is calmed down a little (only getting hit 2-3 times a day now, and has not been above a 6, WOOHOOO!!) But in a previous thread I stated that I was going to start a healthier lifestyle to reduce stress and report back the results, so here goes. First off, I really kinda balked at the idea that I had stress, I have had problems and events of stress in my life sure, but I got through all that, and now since it is in my past it does not affect me right? well that was my thinking anyway. Then my little brother, who is a psychologist working at a large college that does a lot of research, wanted to try some of his research on me. First he interviewed me and asked me a LOT of questions, the gist of this was to find out where I thought my own stress level was at. The results were that my stress level was very low, almost non existent. (keep in mind that this was MY thinking) Then he gave me a little questionnaire that is designed to measure actual stress levels, including repressed emotions, buried feelings etc. Anyways after I took his little "stress test" , he took my results back to his lab and ......lets just say my score was high enough to get the attention of the doctor who was running the whole research study. In his words it was "off the charts". Seems like I internalize everything, and though my mind thinks I deal fine, my body is telling a different story. Neither of these gentlemen believe that the hidden stress is the total cause of the clusters, but the think it might be a factor in the frequency and the intensity. So theres that. Then I started a regimen of yoga, healthy eating (organic and raw foods at least for 2 meals), I am also taking the time to meditate every day. This was VERY hard for me, I had a tough time even sitting still, much less getting my mind to quiet down and clear out. I started with just 15 minutes, and for the past week I think I can actually get to the "zone" for about 5-7 of those minutes. I keep on plugging away at it, eventually I will get there. The yoga is REALLY helping. Not really with the CH but it help my body feel more relaxed and stretches out all those muscles that get all tensed up during the attacks ( even some muscles I didnt know I had..lol) Sooooo, is it a coincidence that my CH slows down the same week I try all this ? For the record I was also using seeds, but took my last dose of them and am now off of everything in anticipation of my crop maturing ;D. Will keep you all posted. So far so good. HUGS and PFW!!!

Got mine in as well...even put the link on my FB page so my friends and family can nominate as well. Good Luck to you Alley! You deserve this! ;D

ok Tony...I am going to try this with you....because you are right that the skins of fruits and veggies have more vitamins and benefits and the pulp. I think I am going to cook the skins however, and incorporate them into my families diet that way. Because banana skins are...in a word...YUCK.lol Thanks for the info. I love reading your posts, you have so much information on natural health. Love it! PFD to you! HUGS!

Hey y'all! I just wanted to put my 2 cents in....I think the fact that there are so many "specialists" is a real contributing factor to the problem. You have a heart doc, a lung doc, a brain doc, a blood doc, a general doc, an infectious disease doc, a bone doc.....the list can go on for days. From what I know from personal experience, and from everything I have read, the cause of CH probably is two fold, maybe even three fold, involving a physical abnormality of the hypothalmus (the extra layer of cells that grows around the gland ), a psychological abnormality in the way a CHer deals with stress, and the emotional symptoms(not sure yet if the emotional symptoms are a cause, or a product of the condition) But seeing how many fields this condition spans, its quite difficult to find a doctor who can see the broader spectrum. I guess in one way specialists are a good thing, because it allows a doc to know a lot more about their area of study, but the systems of the human body do not work independently they work together, and if one of the systems has an issue, it affects all the rest of them. Now that I am having a little bit of PF time during the day, and actually sleeping 5 hours a night (thank you seeds) I have decided to follow the advice I have seen on the board and experiment a little. My first experiment is to get rid of the stress. After the long horrible episode I just made it through my body is trashed, my emotions are on a roller coaster, and I am afraid to even go to the grocery store alone ( I got hit in the drugstore during this episode, wasnt pretty) So I am doing a lot of meditating, reading a lot of books on living stress free and working to identify underlying causes of stress that I have buried. Also doing yoga and listening to relaxing music and meditating. I will let yall know how it works.

This is Moxies headache scale...I think its pretty accurate.

Only thing missing from this pic is our resident photo bomber...lol , cant wait to meet everyone face to face...i assume that next years conference dates will be posted ina timely manner?

I am in my 5th year of menopause, genetically I knew i was going to have a hard time with it, because females on both sides of my family have terrible times with it. During the course of the past 5 years I have almost bled to death requiring emergency surgery to stop the hemorrhage, and have had unbearable hot flashes. I do not need female hormones because I made them leave my female parts in situ. But I never considered having low T . Thank you for this advice. Even if it does not help with the CH, if it will reduce the hot flashes (seriously, I take 3 showers a day with clothing changes) I am all over it. Will check with my lady doc about this! thanks again! PFD!! and HUGS!

I am not in UK but he has all my prayers and wishes for getting better.

Hey Timmy, Since I am still no expert on this (or any other) subject, the only advice I can give is read read read. There are so many highly intelligent people on this site who post a veritable treasure trove of information, its hard to search for specifics though. What I have started doing is during my reading (start at the top and work your way through all of it, including the CB files) then while reading, either keep a pen and paper handy for jotting down notes, OR I just print a copy of it and add it to my headbanger file. That way when you need somethng you can always find it. In reference to your question, I found a link of the meds that play well together, for the ones that do not, I think the general rule of thumb is 5 days. 5 between different meds, 5 between doses, but I might be wrong (not unusual). If I am One of the high council will correct this statement. I put a link below to the article. Hugs! Good luck and pain free wishes! https://clusterbusters.org/treatment-options-busting/playing-well-together/

Par, please be careful, I am not a scientist, and have not a clue about biology or chemistry. I apologize if my remarks seemed flippant as that was not my intention. From the gist of the conversation I am reading these substances sound as if they could be dangerous. I understand trying them though, just please take care k?

Hey Tim! I didnt not get to attend the conference this year but am making plans fo rnext year already. I did visit your web page. Incredible job! Thank you! HUGS and PFW!

Didg...I am in total agreement with you, its like they got their medical degree and now just resting on their laurels. When we were living in Baton Rouge my primary care doc had been treating me for "headaches" for about 4 years, they were getting worse and worse. (didnt know I was a headbanger at that time) He kept giving me stronger and stronger narcotics, which (gasp in shock) didnt work. After 4 years of this treatment with no relief I did a little research on my own and found this "new" condition called clusters. I presented him with all the info and asked him what he thought. He looked me in the face and told me I needed to see a psychiatrist. I am not going to repeat my response to him here (it involved a LOT of bad words and specific directions on where he could put his suggestion). But in hindsite this was actually a good thing, because when I got home I went online to find a new doctor and saw pain management, I figured that this was pain...maybe they could help me manage it. They saw me that same day, and the sweet little fresh out of med school doc diagnosed me with episodic clusters within about 5 minutes. So not ALL of the docs are bad...dont hesitate to fire them...sometimes they get the God complex and forget who they work for...HUGS! and PFW!!! 8-)

I will have my husband and one or both of my daughters get on my account here and give their experiences. I want to thank you for this, sometimes I get so wrapped up in what I am going through that I forget how hard it is for them. And I also want to thank you for being a wonderful caring supporter for your wife, there are not words to tell you how much it means to have someone like you in our corner. HUGS!

This is an incredible discussion! ok So Lt and Tony..yall are saying the hypothalamus activity is more of a response and symptom than a cause? Interesting. And if it would help I would be more than happy to volunteer for any type of psychological study anyone wishes to do...I will volunteer for ANY type of experiments that ones more educated in the sciences than I want to try, hell I would eat a frickin dog turd if I thought it would help us, all in the name of science of course.

AND one more thing....I agree with Tony that sleep is an often overlooked common factor. I have NEVER ever had a "normal" sleep cycle. Cant shut down the mind enough to drift off...so I tend to do without until I am ready to drop, then sleep, but usually only for 4-5 hours.

Ok...I usually stay away from these discussions because I dont want to look like a total derp ...but....speaking for myself only, I have had CH since I was a small child, I dont know if from birth, but definitely since around the age of 4 which is my earliest memory of an attack. How would stress and/or how we react with it come into play at that early of an age? I admit I did have a LOT of high end stressors as a child, and even more as a young adult, and I have always been told that I internalize...hmmm much fodder for the mind...

I am so happy that you found this group of people! I, like you was flying solo, not because the support was not there, but because I was so embarrassed by the condition ( had these for my whole life, 50 years) or because way back when I first started seeing doctors and having tests, they didnt know what CH was, so in their professional opinion I was either crazy, or just trying to get drugs. This site has saved me, and given me courage and support to trust people a little more, and because of that maybe educate them more and raise as much awareness as possible. Thats a lot of the battle. I wish you blessings and luck and much pain free time. If you ever need another guinea pig feel free to pm me. I am willing to do anything to beat this frickin beast down and keep him down. So sick of the pain . HUGS for you! and I will add you to the ninja hug recipient list for the conference next year!

I tend to agree with MFF...I spent 45 years hiding my symptoms and being all secretive and shady about this condition, part was embarrassment (i guess from being so out of control during attacks), and part was I didnt want to be a burden on my friends or family. But Since i have gone chronic, and with the education and support of the incredible people on this site I decided that I was going to come clean and share everything I know about this beast and what it does to person, with anyone and everyone who will listen. I was actually completely amazed at the support I got from friends and family. Even my devout Mormon mother spent a few hours in the early morning scouring the pastures around her house for some busting supplies, and a neighbor of my sister, who is really just an aquaintance, showed up at my sisters house with a small bag of MM he had gleaned from his own pasture. This man even looked up how to dry them properly for storage so they wouldnt "go bad" until he could get them to me. How frickin amazing is that? Made me feel all warm and fuzzy :. So our support IS out there, and most of our families are more than willing to help. My husband has recently become a staunch supporter since he walked in on me during a K9. Give folks a chance, even your kids, you never know till you try. HUGS and PFW to all of us!

I may have created a monster! For the past couple of days my neighbor has "popped" over to see if there is anything she can do to help. This behavior is ....nice, but not really needed. She has offered to help with cleaning, shopping and meals. lol I told her that her offers are MUCH appreciated, but I am able to keep up with most of the house in between attacks. Gives me something to do besides wallow in my self pity. This behavior is better than her previous uneducated arrogance though. And she DID bring me homemade chocolate chip cookies...still warm...OMG.

^^^^ what she said.

The recliner thing works for me as well. I also have a hospital wedge that I sleep on during episodes (which is always, sigh). I never thought about it before, but it does help.