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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

As I sit here, at the tail end of my second attack of the day, I can't help but to think about how I have taken for granted every single day of my life before these headaches so suddenly appeared. How the little things, that used to get me going, the "woe is me" moments that I would bestow upon myself, or the days I would think to myself, "my life is so hard," seem so insignificant I cant wrap my head around it now. Although I have lived with these headaches for only a little over three weeks now, I feel that everything I see or do now seems to be in a different light, every second of my day that I don't have to go through the pain that I indure during these attacks to the right side of my brain, feel like a gift, like a blessing that I hadn't seen in the past, that I had been blind to for thirty years. Just wanted to get that off my chest, knowing for certain, that everyone who suffers here would understand this....like nobody else around me can. Thanks for listening.

Hey Guys. I stopped smoking a while ago and start vaping, I never noticed any interaction with CH. This saturday I orderd liquid from another brand and BOOM 4 attacks a day ( I normaly suffer from 1 a 2 a day). So I checked the ingredients and the new liquid contains ethanol wich is alcohol. So if there are more vapers around here, avoid that. Greetz.

Hi Richard, as CHFather said, there's no way to tell if it gets worse or better in its own; it's different for everyone. The good news is, you have a diagnosis which means you are on the path to proper treatment! CHFather summed up all the various approaches perfectly. You ask what works for us, so, for myself, I have successfully "Busted" a normal 6 - 8 week headache cycle in three weeks. That means I took psychedelic substances using the ClusterBuster methods and my headaches went away. It is not like popping a Tylenol; there are specific rules to follow that play a significant role in how effective it is. Please read up or ask questions (or both!) before trying this method. Furthermore, I take the Vitamin D regimen per Batch's instructions as a preventative. The only difference is that I take a regular dose of 20,000 ius of Vitamin D a day (double Batch's recommendation). I'm about six and a half feet tall, so I need the extra boost to be on par with my size. I have an O2 tank I'm going to send back to the oxygen company soon, since my headaches have stopped. I also have oral and subcutaneous (shots) Imitrex. Imitrex works wonders on a headache when used properly, but I must caution you: I get rebound headaches when I use it and others have reported the same. I will only take Imitrex if it is a true emergency or if, for example, I'm in the middle of commuting home and can't pull over or last until I get home. I have also used the ice water/ 5 hour energy method referenced by CHFather. It's not a guarantee, but it has worked before. Finally, I'm big on keeping a headache diary. The collected data helps to figure out what works, what doesn't, and to keep a cool head (pun unintended) when things are at their worst. I'm sorry this is happening to you; it sucks. But there are people here to talk to, and many different strategies for dealing with this thing. Good luck!

Richard. The course of CH is unpredictable. Some people have long remissions, and some get "worse." However, with proper treatment, the "worse" can be managed so it's certainly not nearly as bad as what you've been going through -- and there is significant hope for effective preventives on the medical horizon. There are two categories of treatments, preventives and abortives. What works as an abortive is, first and foremost, oxygen. Effective; no side effects. You want a prescription for high-flow O2 (at least 15 liters per minute) with a non-rebreather mask. Oxygen in cylinders, not from a concentrator. Sumatriptan virtually always works as an abortive. If nasal spray didn't work for you, injections almost certainly will. Significant side effects, but it does stop an attack. As a preventive, I'm going to say that the vitamin D3 regimen is the best way to go. Good for you as well as being effective. Read about it in the ClusterBuster Files section. Verapamil can be effective, but many people need dosages that are higher than what most doctors know to prescribe: up to 960 mg/day. This level has to be gradually worked up to. There are a lot of other things that will help you, such as rapidly drinking an energy shot such as 5-Hour Energy at the first sign of an attack. Read around more (I know it's a pain, but you'll learn a lot) and you'll see other things that help (ice water, melatonin, Benadryl, ...). But from a doctor, what you want are an O2 prescription, verapamil, and sumatriptan/Imitrex. You might not use the verap and the trex (and the trex is frightfully expensive), but it's good to have the scripts. This site was founded by people who discovered that psychedelic substances, often taken at a sub-psychedelic level, will very often end cycles and might prevent future cycles. You can read more about that in the numbered files in the ClusterBuster Files section.

Macad...thank you...that is excellent observational detective work. I used to smoke....I still miss it 5 yrs later...but I figured trading one nasty habit for another that is marketed as "safer" was fooling only ONE person...me. Small thread hijack but related: FOOD labels.....which I used to write. Read 'em like your life depended on it....your CH health certainly might. MSG is a trigger for many...it comes in many forms and can sneak up on you...there are lists on the internet but several include autolyzed yeast, hydrolyzed vegetable protein. Many foods contain naturally occurring glutamic acid (e.g. mushrooms, tomatoes) ...a precursor to glutamate. Diet drinks containing aspartame are a trigger for me and I suspect others...aspartame acts similar to MSG as a vasodilator. Those "uncured" meat products....where they scream no nitrates/nitrites (mostly a migraine trigger...but I suspect some clusterheads too) are BULLSPIT. Note the "exception" in tiny writing: "except for those naturally occurring in the added celery juice". HEY...nitrates is nitrates...many vegetables contain "natural" nitrates....like celery! Again, check the internet for lists....those hits out of nowhere you get...might be from your food. Best Jon

Melissa, A CHer with active CH nursing a 7 month old baby... BINGO!!! You really need to be taking 10,000 IU.day vitamin D3 plus Omega-3 fish oil and all the vitamin D3 cofactors. If not, your baby needs a minimum of 400 IU/day supplemental vitamin D3. Yes... I can hear the wheels turning... Who is Batch and what are is qualifications for saying this? Good question... Although my answer may not be sufficient for you to follow the suggestion as I'm a 73 year old retired US Navy fighter pilot with a degree in Chemistry, 24 years as a CHer (chronic since 2005) and full time student of vitamin D3 since October of 2010. That's when I discovered that 10,000 IU/day vitamin D3 plus Omega-3 fish oil and all the vitamin D3 cofactors prevented my chronic CH... I've been CH pain free ever since. This regimen is so important for good health and among other benefits, it builds a T-Rex immune system, that I have my entire family taking it and none of them have CH. Of particular interest to you are my daughter and niece. Both have been taking this regimen for years. My daughter gave birth to her second child in July. This baby and his sister, now 3 years, were both bathed in maternal vitamin D3 at a dose of 10,000 IU/day since conception. Both pregnancies and deliveries were flawless. Moreover their neuromotor, physical and learning development while breastfeeding at this maternal vitamin D3 dose are nothing short of phenomenal. My niece took this same regimen through her pregnancy and is still taking it like my daughter while breastfeeding. Orrin, 5 months and Fred, a.k.a., Winefred, 3 years... Yes, I'm a doting old grandfather... but I've never seen more healthy babies... and Fred speaks English and Hochdeutch... I credit their excellent health and rapid development to their mother taking 10,000 IU/day through pregnancy and while breastfeeding... Fred also takes vitamin D3 at a dose of 50 IU per pound of body weight a day... She's a 40 pounder so that works out to a vitamin D3 dose of 2000 IU/day... and not the 600 IU/day recommended by bureaucrats at the National Academy of Medicine, formerly called the Institute of Medicine (IOM). Now to the experts with the sheepskins in the appropriate fields and years of professional experience with vitamin D3 studies who suggest 10,000 IU/day during pregnancy and while breastfeeding... Bruce W. Hollis, PhD, Professor of Pediatrics, Biochemistry and Molecular Biology, and Director of Pediatric Nutritional Science at The Medical University of South Carolina, Charleston, SC. The Institute of Medicine has set the “upper limit” of recommended intake at 4000 IU. Is it safe for an adult to take 6400 IU? "The IOM setting a limit of 4,000 IU per day was subjective and not based on any trials. The Endocrine Society guidelines state that 10,000 IU per day is safe. In my own experience with our trial and several other trials in which I have been involved (involving tens of thousands of patients), not a SINGLE adverse event has been observed due to vitamin D intake. I personally take 6,000 IU per day and have for years, and my daughter just had a child and is taking 10,000 IU per day while lactating (going on a year now). Totally safe." Hmmm... How about that... A highly qualified PhD, Professor of Pediatrics, Biochemistry and Molecular Biology and Director of Pediatric Nutritional Science at The Medical University of South Carolina, Charleston, SC recommends a maternal vitamin D3 dose of 10,000 IU/day... and that's what his daughter has been taking while breastfeeding... "Totally Safe." See the following link for more details: https://kellymom.com/nutrition/vitamins/vitamin-d-and-breastfeeding/ This was an interesting study where one group of 74 breastfeeding mothers took the "Old School" recommended prenatal vitamins and minerals with 400 IU/day vitamin D3 during pregnancy and while breast feeding... After 7 months of breastfeeding their mean serum 25(OH)D was only 79 nmol/L (36.6 ng/mL). 25(OH)D lab tests of their babies indicated 78% of them were vitamin D3 deficient until provided with 400 mg/day supplemental vitamin D3. The other group of 78 breastfeeding mothers took the same prenatal vitamins and minerals with 400 IU/day vitamin D3 PLUS another 6,000 IU/day vitamin D3. After 7 months of breastfeeding their mean serum 25(OH)D concentration was 151.2 nmol/L (60.5 ng/mL) and more importantly, their babies had a mean serum 25(OH)D concentration of 106.9 nmol/L (42.8 ng/mL) WITHOUT supplemental vitamin D3. Grassrootshealth recommends a maternal vitamin D3 intake during breastfeeding of 6400 IU/day... as a minimum... to ensure breast milk contains ≥ 400 IU/liter 25(OH)D. See the following link for more details. https://grassrootshealth.net/blog/vitamin-d-for-breastfeeding-mother/ Grassrootshealth.net also has a wonderful 25(OH)D home blood spot test kit for $70, no Rx needed and you'll get the results back in less than two weeks. I've used their DIY 25(OH)D test kits for years. See the following link for details. https://grassrootshealth.net/project/daction/ So there you have it... You can continue suffering from CH... or you can download the anti-inflammatory regimen, take a copy to your PCP, discuss it, then ask for the 25(OH)D lab test. When the results of that lab test come back indicating you're vitamin D3 deficient, start this regimen and follow it carefully. I'd go one step further and take your baby to the pediatrician and ask for the same 25(OH)D lab test. If you do this, your CH will become a thing of the past and your baby will be getting more than sufficient vitamin D3 while breastfeeding. Over the last seven years, at least 4 ladies with CH started this regimen and continued it through pregnancy and while breast feeding... Results... No standard CH medications with all the side effects, no CH and 4 very healthy babies. Take care and please keep us posted. V/R, Batch

Wow Melissa...we really are sorry you need to be here...but you sure found the right place. Been doing this dance for over 35 yrs and the series of replies you got were as BRILLIANT as I've ever seen...starting with an awesome post from "fella"...................MY OH MY! My salvation was a forum like this (talkin to folks who KNOW...and will not tell you it's all in your head (even tho ironically it IS....sorry ch humor)), OXYGEN OXYGEN OXYGEN, verapamil on occasion, energy drinks, Zomig nasal spray (5 mg) for the breakthroughs)...which probably are contraindicated for a nursing mother...but keep in mind for later.....much less weird side effects (for me) than imitrex, AND the D3 regimen which Batch has developed and is cheap, easy, no script required, beneficial to overall health, and highly successful for a number of folks. Best Jon