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Hi blueblueblue, So how is the migraine coming along? - only kidding! Sorry to hear of your troubles and welcome to the group. There is an extremely active closed discussion group on a certain other social media platform that you will be told about, featuring many of the Clusterbusters group members. You need to attend the annual Clusterbusters meeting in Denver, middle of Sept 2018. I am happy to facilitate an early office visit on your request-if you are interested message me with your contact info, I have not been on here in a while but will keep an eye out now. Regards, Brian E McGeeney, MD, MPH, MBA Neurology Dept, Boston University School of Medicine and Boston Medical Center.

I just stumbled upon this website in search for some sort of cure for my headaches. I just had to take many weeks off work to deal with a cluster after 2 year remission. I had my first headaches very young, around 14. At the time it was pretty much just "eat some Tylenol" situation. They slowed down in my early 20's. I think I know why now but it would have been nice to know during the intense regions of the pain. Relationships and friends lost over crushing my face into pillows and floundering around; I wouldn't have wanted to be around me, not surprised in the least I became a misfit. CH was diagnosis and it was pretty obvious, unilateral left side, unreasonably painful, to the point that I'm not even sure I can feel physical pain like I should be able to since the 6+ years of chronic headaches. I had hope that after a couple years of remission some miracle cure had come out and seeing an ER would fix me during this new bout. It looks like the same landscape as it was before. I know what makes them go away, I wish everyone did and it was accessible. Oxygen doesn't seem to work for me; I have huge lungs - different story but they are gigantic. Maybe if I increased the flow it could help. Calcium channel blockers did nothing, triptans do very little other than side effects and weird injection site pain. Anyway, just introducing myself. Looking for a new neurologist in Boston area that specializes in headaches, specifically CH. I am sick of being grouped in with "migraine sufferers". I am sure that is terrible but they are clearly wholly different in their origins and mitigation. Hope everyone is doing alright, stay strong etc.

Vitamin D level is usually included in standard blood panel. If you're going to use those sumatriptan injectors, be sure to read the file "Extending Imitrex" in the ClusterBuster Files section (it's on the second page, I think). Virtually everyone can get by with less than 6 mg. For some, 2mg is sufficient; 3 works for pretty much everyone. The Facebook group that the doctor mentions is "Cluster headaches." I'm giving you the specific name because there are other CH groups at FB that are suspect to some of us.

Wow, thanks for the suggestions. I will be looking into these and will definitely be contacting the doctor suggested; my PCP is getting me a referral to Boston Medical Center so I wonder if he is the person that she found. Normally my doctor does not refer out of her area but I stressed the importance of the cluster headache diagnosis. I had just spent ~3 weeks at a number of hospitals with literally no solution other than IV/Oral Ativan, sumitriptan injector script, no focus on CH at all, in fact I was largely ignored while being treated at one of the larger/famous hospitals in the Boston area. The need for a specialist is obvious so hopefully I will be lucky enough that the doctor and I cross paths in the near future. I am lucky enough to have enjoyed a few years CH free - I still get the 3 am wake up every morning right now in this cycle but no headache attached at the moment. I have had a lot of blood drawn in the last month - is it possible that 25(OH)D testing would be in any of that blood work? I probably had 15 blood draws over the course of the 3 weeks.

Hello everyone, My name is Richard, I'm 25 years old and I have been having Cluster Headaches since summer of 2014. It is only recently however that I've had the official diagnostic. Before, my doc thought they were just really severe migraine episodes. During those 4 years, I've tried all sorts of meds including verapamil, rizatriptan, sumatriptan (nasal spray), cambia, inderal, and I've tried other approaches such as massage therapy, chiropractic, naturopathy and acupuncture. As you can imagine, I've been reading a lot recently about CH and to be honest, I'm afraid. Just the fact that people refer to this condition as "Suicide Headaches" is scary in its own. When it first started, I would have 1 or 2 headache everyday for 2-3 weeks once a year. Now, I'm having 2-3 a day for 3-4 weeks once a year. I'm going back to my doctor so I can get (hopefully) referred to a specialist, but until then, I'd like to know from you guys, what can I expect? Is this going to get worse? What did you try, and what works for you? Thank you, I appreciate you taking the time to share! Richard

Welcome to the community blue...sorry ya need to be here! You have a most excellent neurologist in Boston who is also a longtime member here in Dr Brian McGeeney!! He has been attending our annual clusterbusters patient conference for several years and is a really great guy! Let his office know you're a clusterhead and I'm sure he'll work you in asap!! Dallas Denny

Hey Blue X 3, Welcome to Clusterbusters. We know what you've been going through and the good news is it doesn't need to be that way. You've got two effective options... Busting and Vitamin D3. The busting experts will be along shortly so I'll cover the vitamin D as you're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH. Download the anti-inflammatory CH preventative treatment protocol from the following VitaminDWiki link and take it to your PCP. When you get there, discuss starting this regimen and ask for the lab test of your serum 25(OH)D. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 This is not a joke and I don't sell anything. I've been providing information outreach to migraineurs and CHers on the benefits of this regimen and vitamin D3 since December of 2010. If you've any doubts about starting this regimen, click on the following VitaminDwiki link. It will take you to a page at that site that's all about my work with CHers taking this regimen with vitamin D3 and the cofactors. http://is.gd/clustervitd If you’re still in doubt about starting this regimen, please read through the following posts by other CHers who started this regimen. I have hundreds more just like them. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/798/#798 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1393027277/2/#2 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1425/#1425 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1465/#1465 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404/278/#278 Please feel free to ask questions... Most CHers have them when starting this regimen... I'm here to help. Take care and please keep us posted, V/R, Batch

Hi littlecush...welcome...sorry you gotta be here...but tis the RIGHT place! For many years I was DESPERATE to "explain" to non clusterheads what it was like. Even best of friends, coworkers and family members would roll their eyes and "yup" me. There is even a marvelous letter penned by Simon explaining what the ailment is...quite thorough and touching...and I even gave up giving that to folks....it just didn't register. The ONLY person...other than other clusterheads and ONE neurologist..... who ever got it..... was a coworker who had a friend with CH he used to drive to the ER. Anymore I just don't give a damn....got more important things to concentrate on....nobody hears nothing but positive from me. Getting hit is a bitch....in between hits? life is wonderful. Mind game I guess............ Re work...I get it...used to worry obsessively about how I "appeared". This kind of depends on the type of work and the kind of folks you work with and their regard...or not.... for you...beyond your "ailment" ... YMMV. I just worked my ass off in between hits or inability to function: accepted extra work, extra hrs, extra responsibility, extra anything. I know this sounds glib....and it is the hardest thing to do and NOT always possible....but I figured I had no choice. Additionally, the stress of work was a preventative...until I got home...THEN got BLASTED..... What made the above...and life in general POSSIBLE was OXYGEN!!!!!! I carried an e-tank with me everywhere I went...with a clustermask purchased at ch.com (my favorite possession). I hit that baby with an energy drink appetizer at first sign of hit.....and back to work. I sure hope you got access to O2 ...and with proper technique you will be transformed.................................... Night time hits are particularly cruel...pain, sleeploss, aggravation, etc..... am quoting myself from another post below: When episodic and in cycle I used to get BLASTED at night...8 times...once per hour..so I may have compensated by becoming a light sleeper. Anyway, I would set up my O2 buddy right next to me...turn the dial to 0 and crank the valve open. The instant I was awakened I would slam the mask on (non rebreather purchased from ch.com...my FAVORITE possession!) and turn the dial up all the way (easier than trying to find the valve handle and fumbling in the dark). For some reason...also I know not why...these hits were more subject to successful O2 abort than day time hits (perhaps learning to wake before the hit got too bad, dunno).....5 mins or so and I could go back to sleep. Ya gotta work the mental aspect too. YMMV...this is what worked for me: Early on I used to get all agitated... screaming, thrashing, cursing, pacing, sweating, ADRENALINE by the bucket full. Learned the HARD way this was getting me NOWHERE...for any hit at ANY time...life got a whole better after I figured that out. Next I realized besides remaining calm I needed to remain "not fully awake" which allowed me to go back to sleep nearly immediately. Left the lights off, kept my eyes closed, stayed on the edge of the bed with minimal movement, and most importantly concentrated on BREATHING only...no thoughts of anything else....'breath in-breath out" rinse and repeat.... Finally....the next morning...on the way to work....rather than cursing the bad luck of constantly interrupted sleep....I rejoiced that "HEY...I got 6 hours last night" (which was WAY better than before)......it got to be a game that me and the beast played. Attitude...it's all in the attitude... CH as well as life................ Best Jon

Just registered, more than willing to get to the end of these Clusters, nothing but trouble, boss's do not get it when you have an attack, been fired one to many times, yeah, more than willing to assist in a study !

also just registered,thanks bob

Just registered. Hopefully it is still running... Thanks. John.

Hello all, I was diagnosed with Sunct in 2012. In 2013, a diagnosis of Local/Focal seizure syndrome was added. In February, I filed for SSDI. The caseworker had a difficult time finding Sunct in her system and ran my SSDI on epilepsy and Sleep apnea. I, of course, was denied because my 13 pages of medical evidence I brought with me to my appointment was directed at Sunct. I have been unable to drive for a few months now. The denial said, I was not severe enough to warrant disability. Last Friday, I went in to the hospital to do a brain map in the hopes of showing where in my brain activity is ignited. Good news! The seizures are aura related, along with the numbness in fingers and toes, facial paralysis, and confusion. I never knew what an aura was until last Friday. I was on 3000 mg of Keppra and the seizure specialist said I was suppose to lower the Keppra to 500 mg 2 times a day and get CBT therapy. I looked at her with confusion. I possess a BA in Psychology & a minor in Criminal Justice, as well as, an MBA. She said with CBT the aura symptoms will be improved, but, you still can not drive. Oh, you need to go see your neuro in two weeks and poof I am dismissed. Mind you, I am still experiencing everything I have been for the past 3 years. The Sunct is in remission THANK YOU JESUS! Question: Do you think I should hire an attorney to appeal the SSDI decision? I get so confused, I am not sure if I can do this myself. I need help! Thanks everyone! - Sheri :-[